Beloved Life

Overthought or Afterthought?

2011-11-28T15:19:00.003-05:00

My children LOVE Max and Ruby, the animated television program based on books by Rosemary Wells. aThis is about tweo little bunnies that live together in this nice big house, and all the things they do. The storyline usually goes along the line of Max getting into mischief and Ruby rescuing him or preventing him from incurring bodily harm to himself or others. It has a very catchy theme song, and is filled with bright colors and basic animation that is still appealing even to young children who are getting used to complicated computer animations. Yesterday, my children were watching Max during one of his escapades in which he was trying to go outside in the rain , but Ruby kept making him put on his galoshes, when they finally made it outside it stopped raining. My oldest daughter looks at me and asks me “where are Max and Ruby’s parents? How come Mrs Huffington is there and Ruby’s friends all say they can’t be late because their mothers will be worried? Why don’t the parents ever appear in the show?” OK, so what do you say? Well I thought about it and ended up with my traditional “I have no idea, it’s a show for 3 year olds, but good observation”.
In reality, the more I thought about it, and yes I admit I did think about it, there are many different scenarios. Perhaps the parents are incarcerated since they apparently are absent and never are around. Perhaps the house that Max and Ruby live in is really one of those cute little Lilliput play homes that is in the backyard of Grandmother’s house, where the two really live under close supervision. Then I thought about it more, perhaps Ruby is the mother of Max, she seems very mature for her age after all. Maybe she is just making the most of her circumstances and is raising Max responsibly. Maybe Ruby’s mom or dad are single parents and they spend all their time, including at night during sleepovers, working to make money to pay for all the nice furnishings and house that Max and Ruby live in, which means Ruby is the mother and father and caregiver to her little brother Max. Maybe they are really orphans living as a family, but really they are just two kids stuck in odd circumstances. Then it finally occurred to me, I am over thinking the television show for 3 year olds and I really need to get a life.
So, what do you think the story is behind Max and Ruby, where are Mum and dad?

To B or not to B...or maybe its a D?

2011-11-27T14:28:00.005-05:00

Being the mother of six children, I found that it is difficult as you get into the higher order births to have time to bond with the newest bundle while still maintaining household chores. dinners, shopping and life in general. Breastfeeding I found to be the way to force myself to take time to hold my baby, and bond. I found ways to organize my life in a way that would allow me to perform multiple tasks at the same time. I became the juggling genius.
In general, breastfeeding has been important in my life, even being the driving force behind my current occupation. My quest to becoming a medical provider began after child number 2 was born and I was faced with the possibilty of not being able to breastfeed due to a potential surgical intervention. I remember thinking it was absurd that ther was a possibility that I might not be able to breastfeed my baby. To make a long story short (and not medically involved and to spare you the TMI effect as my 11 year old tells me), I was able to continue breastfeeding and even was spared the said medical intervention, perhaps because I spent so much time pumping and nursing that it resolved my underlying issue. Following this close call, I began to look into lactation counseling as a job. I took the opportunity to call my all time favorite obstetrician, Dr K to ask about what his thoughts were about my becoming a Lactation Counselor. I remember him chuckling and telling me if anyone could do it and be good at it it would be me. He then proceeded to tell me to call his partner Dr B and talk to him because he was much more in tune with these things and was the up and coming MD in my area. To this day I remember exactly where I was when I go the phone call from said Dr B and discussing my new found opportunity. I recall how supportive he was, encouraging me to take this on. I did go on to complete my training and worked as lactation counselor for a year before my Peanut came along. After I had my Peanut I found there was a huge hole in lactation services in my area, that there were not many counselor's or consultants specializing in babies with hypotonia (low tone) and related medical problems that can be associated with Down's. I quickly worked to specialize myself in the area learning about what it takes to help mom and baby with special needs - DS specifically- become a successfull breasfeeding duo. I even had the opportunity to appreciate perhaps why I had become an CLC when I did. My first patient was a lovely mother, who interestingly called me not long after I had my Peanut, as she too had had a child with down's and was looking for lactation help and was given my name - for a second time. She was so relieved that I was the referral and also felt that G-d had shown us if just for a split second his plans in action. Over time, with my experiances as a Lactation counselor and my own personal interactions with medical professionals, my friends starting to put the bug in my ear - medical school vs PA school. The rest as they say is water under the bridge. Basically breastfeeding is an important aspect of my life in many ways.
The idea of breastfeeding is not foreign to my kids either. They will tellme when the baby is crying he wants nursed, and they have each at one point in time tried to 'nurse' their baby dolls, and are body conscious to note who has "nursies" and who doesn't. For example my 4 year old told me last week that he has nursies and it was "funny cuz boys don't nurse babies mommy!" This awareness and the fact that I do tend to nurse my children longer then most women do, can potentially lead to awkward situations, even hysterical ones. Thank goodness my kids have never attempted to lift my shirt or help themselves in public, usually becuase I wean by the time that are 18-22 months. I can now say that I have had the experiance however, of taking my 14 month old baby with me to the fine lingerie store to purchase stockings for my work week. He did a great job in the store with me while I found exactly what I needed, but put me on the spot when I put him down for 30 seconds so that I could sign the charge slip. My little cute innocent boy toddles over to the store window display where there are mannequins that are mere torsos set on the floor. They are scantily clad showing the most fashionable undergarments available. It is the storefront that many males can be found inspecting at any given time during the week. My little boy goes over to the one with the lovely periwinkle colored brazier, looks at it for a second inspecting the lacework, then lifts it up and yes, he tried to suckle from the mannequin. I was slightly embaressed, but grabbed him away and apologized to the store owner. The owner subsequently looks at me and at the mannequin and asks me "isn't that the one you purchased last month?" for lack of a better response I glanced back at the mannequin and said, "no, mine was a D, not a B". I quickly left the store, but was a bit red in the face. I am not sure I will be shopping there for a litle while, at least not with my baby in tow. Although I have to give him credit, he recognized the similatiry and connected the color and style with nursy - a comforting loving moment. I think it mught be time to pack the girls up and call it a day....or maybe I'll give it another couple months.

I understand....

2011-11-25T10:04:00.002-05:00

I took some time to read my old postings and to reflect yesterday about how my life has changed since I started this Blog. Even just since that last time I posted (admittedly almost 2 years ago), life has taught me more lessons. Since the last time I blogged, I have had another baby – yes, number six , call me crazy – I have spent time working as physician assistant in neurosurgery and now am working in women’s health. Just to reflect about life, based on my personal life and my new professional experiences:

One thing that I have thought about more is the phrase “I understand what you are going through”. Such a small phrase, I say this to my patients every day to express concern and legitimize what they are feeling or dealing with . Of all the sayings in the English language this is a sticky wicket, because it can reflect multiple expressions. It can be a courteous PC response when the individual is trying to be nice when they are at a loss for words. It can be a genuine expression of concern with an underlying lack of better words to say, or without real legitimate understanding. Finally it can be the genuine response of concern by someone who may not have experienced the EXACT same situation, but who themselves have been through a life altering experience that can relate on some level to how challenging and life altering the others current situation is. The most difficult thing is not to be on the consoling end of that conversation i.e. being the one to say “I understand” but actually be on the receiving end. Having been on the receiving end of such a conversation I recall many times that my reaction was one of disbelief. “who are YOU to tell ME that you understand what I am going through? How could YOU possibly know what I am thinking/feeling? You have never been in my shoes, or dealt with what I am dealing with, so how dare YOU tell ME that you understand! Just go your own way and leave me alone.” Rational though obviously is not existent in this situation. Over the years I have trained myself to reverse this negative thought process into realizing that one of two things may be occurring: (1) they are at a loss for what to say, so they are nice, polite, but really they don’t have any clue or (2) they really do understand. I have learned over time that I actually prefer that “I understand” response much more than the other alternative of “oh that’s too bad” or “what a shame” to which I switch to a questionably more warped thought process, being that I pretend that people are mentally ill. On the other side of the table are those people who genuinely understand what it is like to experience a life altering event, albeit the experiences may not be EXACTLY the same.

After I had my Peanut, the most difficult thing for me was to let my emotions go. I was embarrassed. I didn’t want my friends, loved ones or medical professionals to think that I was weak, or that I couldn’t handle the new situation that I had been placed in . I held those emotions in for as long as I could, until at one point when Peanut was about 6 months old, it was suggested to me to allow myself to feel. I remember thinking that was crazy, why do I want to feel those emotions? How do I allow myself to feel something that I have chosen for this long to repress that I know is going to hurt? The ultimate question that I was afraid of was what was I going to feel once I let my guard down. I was so afraid of this, that I kept my feelings locked away for as long as I could. It got to the point that I was just not myself and having trouble sleeping and would prefer to stay home away from people. So what was the suggestion? The suggestion was to write my birth story. Put my pregnancy thoughts and feelings on paper with pencil. To write down exactly what I remember thinking, feeling at every point during the pregnancy, labor, delivery and even postpartum. I have to say in all the things I have done in my life this was the most difficult task I could have undertaken. I remember locking myself in my bedroom after my kids went to sleep and hand writing the story, erasing as I saw fit. Crying, feeling that heart wrenching sensation all over again. The fear of not knowing what the future was going to hold, the pain of the loss of my ideal future plans and loss of friendships that I had held dear, and the consolation of new found friendships and a couple existing friendships that were strengthened by my new situation. Even now, when I read what I wrote, I cry, it brings all those emotions right back and I still feel that heart wrenching sensation, as much as I would like to repress it, I can’t anymore. The best thing I did after writing it down and copying it, was to take my hours of hard work and rip it to shreds. I was so good to be in control for that set amount for 2 seconds. To be the one deciding what to do and when to do it. The poem Welcome to Holland by Emily Pearl Kingsley (http://www.our-kids.org/Archives/Holland.html) truly applies to how I was feeling. I had in my mind all these plans for my perfect life with my picket fenced house and college and marriage and grandchildren, and all that changed in a flash. All my dreams and hopes dashed to the wayside, all because I apparently caught the wrong flight and landed in Holland instead of Paris.

Now, seven years later, I am still repressing some of my emotions. Yes, I admit it, I am human. I try not to think about the future to much because it makes me very anxious, and can evoke panic attacks. Not knowing who will care for Peanut to make sure she has her financial and medical care, to make certain decisions are made appropriately. Making sure she is not alone in a personal care home because no one wants to care for her or cannot afford to take care of her. It is difficult in social situations where there are other children who are my daughters age whose mothers I was pregnant with at the same time, when their daughters stare at my Peanut and do not include her in play dates or parties. Thankfully, until recently Peanut has seemed to be oblivious to much of this, but now she is starting to try to be social herself. She will approach the girls and say hi, but they giggle and walk away or turn to ignore her, while the parents just watch and do not help them to interact. Recently Peanut lost her best friend from school, who died suddenly, she notices that he is not here anymore. She is becoming more outwardly expressive of her surroundings and will soon notice and ask why she is not being included. I know that part of this is my being sensitive and that I will have to continue to be the ‘bigger person” but it is still not easy. Over the years I have come to appreciate how much my life has changed for the better because of the new situation I found myself in. I have a new career, my friendship with a few friends has been strengthened, and has survived the ultimate test and I know who my “true blue friends” really are.

For myself, I have come to realize that there is also a component to the medical professional side of emotional reactions. Having worked in a level one trauma center where you see lives change in the blionk of an eye. As medical professionals we often deal with life altering situations, as in neurosurgery I dealt with death on a daily basis. We are taught to bury our true feelings, as you do not have time to react and become emotional when dealing with the patients and their families. You as the medical professional need to be the Rock, the anchoring person, giving support both emotionally and sometimes physically helping to aid a family member to stand up or sit down so as not to fall as you bombard them with bad news. it is then difficult as medical professionals to then allow ourselves when we need to let our emotions go because we feel that we are failures. Reality is that we are just human. IF we keep these feelings bottled up we become wounded inside, that people cannot see, but that can have devastating effects on our lives, relationships and can potentially affect our jobs as well. What would I tell you to do about this? Talk to someone about what you are feeling. If you are not so brave to do so in person, send them a letter, email, or do like I did, blog. There is great comfort in anonymity that allows one to express their true feelings without repercussions or embarrassment. Whatever you do, do not keep it bottled up inside, as it is not going to help you to heal, rather keep you weighed down. Remember that there is a positive outcome to every situation, even if we don’t see it at that time. Not that I am perfect at all, but look at me, I have become a medical provider. I have used my personal experiences to ensure that when I provide care to my patients that are getting grade A top of the line good quality medical care, the way I would want myself or my family member to be treated. I have also come to truly genuinely appreciate the fragility of life as we know it, as Alexander Dumas said “on what slender threads life and fortune hang”.

So when I say “I understand what you are going through” I REALLY understand. My life was flipped, turned upside down seven years ago. I lost friends, strengthened other friendships, we took a financial hit that we still deal with now as medical coverage is not adequate to care for all Peanuts needs. I found a new career as the result of all my experiences with my Peanut, but lost some of my freedom – freedom to be without constant worry in the back of my mind. Worry that I still repress even today, for fear of feeling and for fear of appearing as weak. I am not the same person I was before she was born, lost my ability to have the future set in stone. I still have open wounds that occasionally have salt rubbed into them just enough to remind me that I am human. I take the time to express my thought to people I care about, because you never know what tomorrow brings. Now, I am a neurotic obsessive compulsive planner of the here and now, since I cannot control the future. I control what I can to help keep my true feelings repressed – the feelings of overwhelming smallness that comes with being completely and totally out of control of one’s destiny. Even though the experience is not exactly the same, I am genuine when I say I understand.

Home stretch...

2009-06-14T21:50:00.005-04:00

Well, it has been a long road, but I am in the homestretch now with school. The road to becoming a Phycisian assistant has not been easy, by any means, but it has definitly been rewarding. I have five weeks of class left, then I graduate! Thank HEavens! I have my white coat ceremony and all that is left after that is taking my boards!

THe job huntis on right now, I have a couple of things cooking, but I wont share until I know what is final...don' twant to jinx myself.

Will keep everyone up to date, hoepfully!

THe kids are doing great everyone is growoing up so fast.

Baby Megan is 5 months old already! where does the time go?

Here She is....

2009-01-04T09:28:00.004-05:00

On Sunday December 28, 2008 we welcomed our newest addition to the family.
Megan Reilly weighed in at 7 lbs 2 oz, and 20 inches long.
She is doing great adjusting to family life and fitting right in. All the kids fight over who will hold her next. She is a real blessing and wonderful addition to our family.
I am off of my rotation this week to return next week (boy my two weeks sure is flying by!)
I am enjoyng every minute with little Megan.
Happy new year everyone!

(I am having trouble uploading images..will try again later)

'Tis the Season

2008-12-22T20:23:00.004-05:00

With cold weather nipping at our heels, snow, ice and frigid temperatures are all one needs to be reminded that the holiday season is upon us. It is also a reminder that flu, bronchitis and sickness season is here. Just one look at my schedule at the office will confirm this...
8 am sore throat
815 cough
830fever, chills
845 possible flu?
9 am pneumonia...does this not sound like fun being with all the sick people all day?! Dont get me wrong I love being a PA and doing what I do, but much prefer OB/GYN where the likihood of contracting the flu or pneumonia is significantly decreased.
We are keeping it low key this year for the holidays that is, with the impending event we are trying to stay close to home. I am just trying to get a little rest between busy days working and home with all the activities.
Of course my idea of rest is very different from others...as I demonstrated this morning when the contractor arrived at 730 am, I was in the kitchen standing over my deep fryer making homemade doughnuts. Yes, I am that crazy-pregnant-ready-to-be-done-get-the-insane-idea-into-my-head-just-do-it-because-I-can pregnant lady who is tired, but can't sit down becuase I don't know how to slow down. This is me on slow. Hey it could be worse...I could be scrubbing my house from top to bottom, re-arranging furniture and cooking up a storm.
Perhaps I will do that tomorrow? Hmmmm....
Happy Holidays everyone!

Update Fall 2008

2008-11-09T09:51:00.002-05:00

Hello all, I hope that the summer was enjoyable for all of you! I have been so incrediably busy. As you know I went back to school to be a physician assistant, and have been busy on my clinical rotations. I have successfully completed my pediatric, orthopedic, surgical, and obstertics and gynecology rotations. I am currently doing a second OB/GYN rotation as that is what i would like to get into.
I am also busy getting ready for number five to make its appearance in the near future, so life in my house is a bit busy.
Kids are doing great, missing mommy as my hours to date have been terrible ( I keep residents hours for those of you who are familiar with medical school basically 60 to 80 hours a week).
Peanut is still not talking, and I am becoming increasingly concerned, however, she understands everything you tell her. My oldest is in third grade and is doind amazing she is a super star speller!, James is adjusting to first grade and is still recieving speech for his verbal apraxia, but is doing great as well. My little guy, is 22 mos old now, and is quite the smarty pants! He understands everything and unfortunatly is following in his big sisters path and not speaking but signs and also understands everything.
Big B is doing well, keeping busy with work as well.
Anyhow, I hope to keep all of you posted on the happenings here,
Happy Fall!

The Results Are in.....

2008-05-22T09:14:00.003-04:00

I did it! I passed my exam! I can't believe I did it...but I did! Not only did I pass (with 151 points), but I got above average in my class (141 points), as well as above the national average (140 points)!
WHEW! that's a relief!
Not to brag or anything, just didn't want to leave anyone wondering for the next year ;)
Ok, vacation time can officially begin!
:)

PACKRAT - Another Name for Fun

2008-05-20T11:25:00.002-04:00

So at the end of our first year of Physician Assistant School, they require us to take a national test (PACKRAT is what they call it) to determine our level of knowledge that we have acquired throughout the year. Today was the big day. After months of preparing, and hundreds of dollars later spent on study guides, I took my three hour long exam. We don't get the results back until later today, so i can't tell you how I did. But I can tell you that that was a pretty tough exam...I surprised myself with the things I knew and was surprised at the things I thought I knew but may not have.
It is an exciting day as it means the end of my first year of school. I start my clinical rotations in less then two weeks...seeing patients and learning more. I have great rotations set up, thanks to my fabulous clinical coordinators, and am sure I will have a fun time, albeit exhausting!
I think the family will be glad that today is overwith, as they haven;t seen too much of me lately owing to the incredible amount of studying that I have been doing lately.
Anyway, just thought I would update all of you, it's not that i don't think about blogging, its more that i haven't had the time.
I will keep you posted on my rotations and family life over the summer as much as i can, with all my non-existant spare time ;)
Tata for now!

Update Spring 2008

2008-05-01T06:43:00.005-04:00

So we have been so busy. Hubby is busy at work, and holding the forst down while i am in school and studying. He has become the homework doing, dishwashing, laundry doing, and dinner picker up delux KING!
I am winding down my first year in physician assistant school. I have my final exams next week and the week after. So I have been busy studying and need to be spending more time studying...can never study enough. So this iwll be short, sweet and to the point.

Kids are well...up to their old antics. Had to call poison control twice last week, as the baby decided to drink some contact lense solution and a few days later decided he'd try colgate toothpaste as a chaser. They must think I am the world's worst mom. Really, my kid is just very creative, climbing up in the bathroom on the toilet to climb into the sink and get into the medicine cabinet. Watch out world, first the bathroom sink, next stop Mt Everest!

Eli turned 8, Amanda is 4 now, had her biurthday ...can't beleive it's been 4 fabulous years! THe progress we have made has been amazing. She is such a peppy little, personality filled, loving little girl, who also happens to have a stubborn streak. What can I say...she knows what she wants and when she wants it!

The two little ones are like having twins..they do everything together! Getting into trouble, playing and just hanging around. I will try to post a more complete update after I finish my exams in a couple of weeks. I can share all my upcoming clinical rotations (doctors officed and hospitals that I will be spending the next year at practicing my skills I have learned all this year).

As always...my little girl loves her food!
She gets down and dirty with it...even though she knows how to use utensils...who has time for that! It is much faster and way more fun to shovel it all in there!

Whew! Update 2007

2007-12-30T19:04:00.000-05:00

Ahuva was in her first play...A Chirstmas Play at school, where she got to be Elmo. They sang the theme to Sesame street and ite a Winter Wonderland. She did really well, signing along to the song. I cried...yep, even though I promised I wouldn't, it brought tears to my eyes.
Sorry, I don't know how to rotate the pictures.
You'll have to rotate your heads for this one. The teachers are amazingly talented, they MADE the costumes each child wore. Truly amazing!
The kids are growing like weeds. Baby Alistair is one year old already. Can't believe it..the year flew by. I think with each kid, the years go faster.

If you recall, I went back to school to be a physician assistant ( we do pretty much everything the Doc does, but they supervise us..that's a PA in a very compact nut shell, obviously there is more to it then that).
I have been so busy in school i hardly see my family any more. Just in the morning to get dressed,and out the door. Home to pick them up from Gram and Gramps, and in the dorr to spend the rest of the night doing homework at my desk. Thank god for Gramdma and Grandpa. They have been truly amazing, a godsend that my parents are so willing to help out the way they do. (the hubby has been great too. He does housework, homework, dinner, and well, is pretty much Mister mom.) Been busy with didactic work, for now with the exception of two short rotations in areas to keep us interested. I got the Emergency room out in the boonies...let me tell you, I have some WILD stories from there...unfortunatly due to HIPPA, I am not sure I can share them with you..if you are dying to know a sotry, perhaps one day when the laws change I can share a few. Regardless, they tend to be rated R for stupidity. Anyway, I have loads of other stories...people sure do dumb things, let me tell you.
So here's a picture of me in school, to prove I really am there, and not just blowing you all off for no good reason. I was doing a casting and splinting workshop with a freind of mine and all my class mates. We practice on each other (expensive guinea pigs). This was back in October (seems like a life time ago). Seems like eons ago, but really only a few months...where does the time go?
I am busy busy busy. All day in school, home to made dinner (i mean eat dinner that B bought at the local Pizzaria). You know you eat out too much when you call to make an order and they recognize you by call id...at least that's what Big B says (I never make the orders, he does). Ahuva still is not talking (she says BABY!), bu the signing is coming along great. Although I think we have stalled alittle with the siging due to some OT issues that need to be worked out. James keepin gus on our toes, boys are boys! Elie is a amazing little girl. Alweays helping out, and jumping in in the nick of time when mom or dad need another set of hands. She is also a great speller. Got her report card the other day..all A's, of course I would not expect anything else ;)
Alistair started walking at 11 months, at 11.5 months he was climbing. He understands everything you tell him, smart as all get out. He signs a little and says mama, dada, and all kinds of babble. Really a cute kiddo. Of course I am not biased, not at all.
Big B is busy at his new job. Spending ungodly hours working and coming home to work at home. The work never stops.
With winter break came a respite..ok not quite...a break in the monotony of weekly habits. Time for Doctor appointments and grocery shopping (FOOD!!!!!) ok, some cloths shopping to, I mean I haven't been to Ann taylor, Target or Macys in well, months! Sorry honey, I have to go back...you know how it is when you are goin gthru withdrawal.
Ahuva has had some Cyanotic episodes in the last month and we have to check her out with pulmonology. Cardiology and ophthalmology gave her thumbs up. Here's hoping there's good news here this week.

So here's one last cute picture of my three kiddos...James was off making trouble somewhere instead of getting ready for bath time like the others.
Oh, well, boys will be boys.
At some point I will be able to write more...actually, I doubt that as I start back to classes next week and have no breaks until well, Easter...no I take that back we get off good friday, but not easter. Oh, well, point being, It's crazy heere, life is good, kids are great. Just wondering what the hell I was thinking.. seriously, It's good. Wishing everyone a Happy healthy, prosperous New year with only good news and blessings!
Happy New Year to all!

Family Fun Day

2007-08-21T21:08:00.000-04:00

Amanda's school offers a funfilled day at the school for the entire family to enjoy in the middle of the summer session. We spent the better part of a sunday doing art projects, making jewelry, applying tatoos, and seeing all our friends from the spring.

They had the Penguins penguin there to meet and greet the kids, wouldn't oyu know Amanda was so scared she was shaking, and wanted nothing to do with him. If you look closely in the background of the picture you can see baby head in the stroller looking curiously at the silly bird. He enjoyed it, not amanda.

The school set up a food booth with cotton candy, ice creams and lots of cool drinks. James certianly enjoyed himself.

Hey look, at the left of James you can see baby avi sitting in his stroller, I think he is eyeing that Cotton candy, better watch out James, he's gonna get you!

THere were therapy dogs, caricatures and pony rides, they had a train running on the street in front of the school (they closed off the street), they had a concert with Mr Joe Negry from Mister Rogers Neighborhood and the Purple Panda...did I mention the picnic food buffet complete with hot dogs, and all the appropriate sides...including watermelon!...it was so much fun we are all waiting (ok, not so patiently) for next year...Wonder if they will find a way to do something else...if not, hey it was a blast, and we are totally going to show up.

Ok, I really was there, I know there are no pictures of me, but I guess that's the fate of the photographer. Baby Avi was there too...I swear!

Cool article If you haven't seen it yet.....

2007-08-06T10:20:00.000-04:00

Check this out....

Thunder player finds joy in family struggles

By Lori Gilbert
Record Sports Columnist
April 08, 2007 6:00 AM

It doesn't take long for Stockton Thunder defenseman Beau Geisler to get over a loss.
It's not because when he walks into his home he's confronted with the reality that there are greater challenges to overcome than losing a hockey game. Rather, it's because he's overcome with sheer joy.
It envelopes him whenever he looks at his 21-month-old twin sons, Wyatt and Bryce, who were born with Down syndrome.
He and his wife, Heidi, devout Christians, view their boys as a gift.
"We believe God won't give you any more than you can handle," Beau said. "God gave us two children with Down syndrome, so we must be able to handle them."
"I love the reaction I get when I take them to the store," Heidi said. "I get triple takes. They say, 'Oh, you have twins.' Then they realize they have Down syndrome. I am so proud to be their mother. ... Everywhere I go, people tell me how beautiful they are."
Beau, 26, and Heidi, 22, came to Stockton in October for Beau's third season of a professional hockey career that began in Reading, Pa., with an ECHL team, followed by a season in Latvia.
The couple, who first met at the Evangelical Free Church in Grand Rapids, Minn., that Beau's parents had helped start, married in July, 2004 and wanted to have a family right away.
Beau, the eldest of 11 children, almost always had a baby in his house. Heidi, though, was the youngest of three girls and had no experience with infants, but Beau convinced her motherhood would come naturally.
They were ecstatic when they learned in November, 2004, that Heidi was pregnant. At the six-week mark, an ultrasound revealed twins.
"We were just giggling the whole way home," Heidi said.
Twins didn't run in the Geisler family until Beau's mom, Ruthie, delivered two sets of twin girls.
His mother wasn't there to celebrate his good news. She died when Beau was 10. She learned she had leukemia when she went to deliver the last of her seven children and died 13 days later.
The rest of the family, though, which had grown to 11 children when Beau's father married a woman with two children and then they had two more of their own, was ecstatic.
News that the first grandchildren of Beau and Heidi's families would be twins made for a Merry Christmas in 2004.
Wyatt arrived first, on July 3, 2005, and Beau beamed with pride. He saw a perfect baby, but the doctor told him they would need to run a test for Down syndrome.
"Bryce wasn't even born, so obviously when he told me that I was like, 'OK, I've got to be with Heidi because she's delivering our other baby. I went to her and she delivered Bryce," Beau said.
"The hospital's pretty small, and I was wheeling (the babies) back to our room and I met her mom and dad, and they're like 'Is everything all right?' I didn't know what to say, so I just said, 'Yeah, they're doing great.' I was still in shock. I didn't know anything about Down syndrome."
He didn't know it is caused by an extra chromosome, that 1 in 800 to 1,000 babies in this country are born with the condition. And while older women are more susceptible to having babies with Down syndrome, 80 percent of babies are born to mothers under the age of 35, just because more younger women deliver babies.
When Beau welcomed his newborn children, he didn't want to think that his boys would develop more slowly than other children, that they would be more likely to have heart or digestive track problems.
"I wanted to enjoy their birth, their new life, my two new sons," Beau said. "I wanted to enjoy that, take that all in. Maybe an hour later they could have told me, let us enjoy the moment."
Instead, doctors had told the two separately, and Beau needed to talk to Heidi.
They were shocked. They cried together, and wondered why.
Those thoughts were momentary.
"We were at the point when they were born, we just wanted to hold them and be near them," said Heidi, who went from not knowing if she could be a mother to suddenly being a mom with two special needs children. "Beau and I, when we had them, knew we would give them ... "
She started to cry, admonishing herself for giving way to tears.
"We knew we would give them the best life we could, and treat them great, and everything we'd do with a normal child, we'd do with them.
"We're not going to hold them back. We won't be ashamed of them."
The two boys seem just like any other toddlers as they run around the family's north Stockton home, stuffing basketballs into a miniature hoop, turning on the television set, riding their three-wheel bikes and playing with a stash of toys.
Teaching them to sit up, to crawl, to walk and communicate has just taken more time and effort on the part of the parents.
"You learn a new kind of patience," Heidi said. "It's more like perseverance."
Sitting came at seven months, when they were in Latvia. Walking came last fall, after they'd moved here. They also learned to ride their tricycles and took their first swim in a blow-up pool during this stop of their daddy's professional hockey career.
Although Beau considered retirement as recently as two summers ago, Stockton has been a great fit for him and his family. Playing the game he loves a few more years seems more likely.
"We want them to be proud of their dad, to know he played professional hockey, and that they lived in Europe and California," Heidi said.
Hockey is in his immediate future, but Beau looks further down the road when he looks at his twins.
"I've changed my thoughts, my dreams," Geisler said. "I love hunting and fishing. Maybe they won't be able to do that. Maybe they will. One day I'd like to be able to take them with me. I'd like to take them four-wheeling."
He wants to show them the things he loves, just as the parent of any child does. It's the same vision he and Heidi have held since their babies were born and they learned they had Down syndrome.
"We had two awesome kids. We just had to shift our focus," Heidi said. "We still have dreams of a child who can run and play, but we put them in a new direction."
The boys challenge one another. When Bryce sees Wyatt stuff the ball through the basketball hoop, he wants to do it, too.
"I'm so glad I have two boys with Down syndrome and not one," Heidi said. "They'll be there for each other."
Eventually, Beau and Heidi expect to add to their family.
In the meantime, raising the twins is demanding enough.
"Every now and then, when it's hard, you're overwhelmed, and if the thought (of why) crosses my mind, I know why. It's because we're meant to be their parents. We're perfect for them," Heidi said.
Added Beau, "We don't want anyone else to have them. We feel lucky, fortunate."
Contact columnist Lori Gilbert at (209) 546-8284 or lgilbert@recordent.com. Visit her blog.
Down syndrome
Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from each parent. In most cases of Down syndrome, however, a child gets an extra chromosome for a total of 47 chromosomes. It’s this extra genetic material that causes the physical and cognitive delays associated with Down syndrome.
The cause is unknown, although it isn’t caused by environmental factors or anything the mother does before or during her pregnancy.
It occurs in one of every 800 births. Maternal age is the only factor that has been linked to an increased chance of having a baby with Down syndrome. A 35-year-old woman has a one in 350 chance of conceiving a child with Down syndrome. By age 45, the incidence has increased to one in 30. However, because younger women have higher fertility rates, 80 percent of babies with Down syndrome are born to women under the age of 35.
Kids with Down syndrome tend to share certain physical features such as a flat facial profile, an upward slant to the eyes, small ears, a single crease across the center of the palms, and an enlarged tongue.
Low muscle tone and loose joints are also characteristic of children with Down syndrome.
Half of all children born with Down syndrome also have congenital heart defects and are prone to developing pulmonary hypertension (high blood pressure in the lungs). Approximately half of all kids with Down syndrome also have problems with hearing and vision. Other medical conditions that may occur more frequently in children with Down syndrome include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection and a higher risk of childhood leukemia. Diagnostic tests for pregnant women are about 99 percent accurate in detecting Down syndrome and other chromosomal abnormalities.
Source: Kidshealth
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Lighter side of July.....

2007-07-26T18:58:00.000-04:00

July has so not been our month...kids have been sick, spent time in the hospital, kids have been sick once again with 103 degree temps, sore throats, and no strep...just viral.

AAARRRRRGGGGHHHH! Summer has not been good to us, although I guess I should say thank you that it is not worse!

Here are a few pics from the better times of this interesting month.
Ahuva Loves her baby brother....so much so, that she tries to eat him up!

Alistair is such a cool baby! He is looking mighty fine and cute in his Joe Cool glasses, compliments of mommy ( the things we can get away with doing to our kids as babies!!!)

Life may not be the party we hoped for, but while we are here we might as well dance

2007-07-15T13:58:00.000-04:00

So we made it through the last couple of weeks with a few bumps in the road. But, we made it!
Let's see, to fill you all in, after we got diagnosis of pneumonia, things calmed down with Ahuva a little. She started to feel better and was starting to act like herself. The kid was happy, she was getting ice cream two times a day (we hide her medicine in her ice cream...hey it beats wearing penicillin all day!) However, Baby Alistair decided it was his turn to make us crazy. He began coughing and was having trouble breathing, so we ended up with the Decadron shot for him too. Unfotunately he had a reaction to the shot and became pale for two days... he is still coughing and I plan to take him this week to get re-checked just to make sure that he doesn't have anything else I don't know about.
Wait! You are thinking my week of hell was finally over? No way! Eli felt a little left out of the action, so she decided to be up all night screaming her ear hurt, of course my otoscope wasn't charged so I couldn't look...next day we went to the ENT and there was a possibility that she rutured (perforated) her ear drum. She had puss and goo and all kinds of wild looking stuff coming out of her ear...poor kid! she was so miserable! So we started her on medication, but she still says things sound 'low'...I think we have to get her hearing checked now too....
After ENT we headed over to audiology for Ahuva's annual hearing screen, which she cooperated so well for that they got a good amount of info and things look great!
By thursday last week my motto was...the hits just keep on coming! I have since decided that while life may not be the party we hoped for, while we are here we might as well dance...and so I dance, but my feet hurt and I am so not wearing my dancing shoes, can I leave for a while and come back in more comfortable shoes?

Pneu News

2007-07-06T08:10:00.000-04:00

So it is official, Ahuva has pneumonia. We went yesterday to follow up with our pediatrician since we had been in the ER earlier in the week. She heard crackling and wheezing, and Ahuva still had a temperature, which suggests pneumonia. So we were started on antibiotics and sent home.

Last night at 10:15 pm, she woke up, with a fever of 105 degrees F..burning up, miserable. So we called the doctor who sent us in to the ER for a chest x-ray. Which came back bacterial pneumonia (ok, it was not a 100% conclusive either, but it appeared to have streaks that would support the pedicatricians earlier diagnosis of pnuemonia).

She got back home amidst a chaotic flurry of activity on our street. Apparently some idiot stole a car, crashed it on the street around the corner from us and ditched the car. There were eight police cars, three unmarked cars, two paddy wagons and two police dogs going all over the street, in back yards, up and down driveways looking for the person. When Daddy finally came home aroung 2 am, they managed to catrch them shortly after that....after over an hour of activity.

Daddy gets a big kudos, as he took Ahuva to the ER last night to give me a break...some break, I am such a control freak about her and her medical care, as I am the one that deals with all of it, he just sits back and lets me do it. But he managed to do a pretty good job last night. Although I did not sleep much, I dozed for 45 minutes...how could I possibly sleep if my little girl is in the ER.
I helped that one of the Cheif of ER was there last night taking care of my little girl....I knew she was in good hands.

I need to make a list of all her medical history and allergies and stuff for the fall, as I will be in school and not around all the time, it would be helpful, to give a peice of paper instead of calling every five minutes to talk to the ER staff and quiz daddy on what is going on.

Croup de jour

2007-07-03T08:02:00.000-04:00

We have been busy in our house...making sure that the local emergency room knows how to handle situations where children are in repiratory distress from the croup. This comes at just the right time of the year, the changing of the gaurds...ie the new residents all start on July 1...I make it a habit to stay away from hospitals in July...no offense to the newbies, I just don't want to deal with them...this year, I broke that cardinal rule of mine. Oh well!

We have to start a couple of weeks ago for you to appreciate my situation. We had been diagnosed with strep three weeks ago, went on medication, the next day after the diagnosis we went into the hosptal for new ear tubes. After ten days of antibiotics, I took her back in last wednesday for a recheck to be sure the strep was gone. Then on thursday I had my yearly well check with the local Down Syndrome center ( I have to follow up with cardio now...that's another story). So on Friday when she developed a fever I thought maybe she still had strep. The rapid came back negative and the overnight I found out on friday was negative. So I just watched her. By Friday afternoon she had a croupy cough, and was miserable.

No big deal, right, just the croup? Well, Saterday morning she could barely breath. She was working so hard to get air...I thought that once she was upright for a while it would go away...maybe a steam bath would help. Yeah, right. By 11 o'clock she was taking breathing breaks from her activity...playing then stopping to lay down and breath...I felt so bad at that point I took her into the ER. We spent the afternoon there, getting Vapos and Decadron shots...finally she sounded better then she had when we had arrived that they let us go home.

But wait! We didn't sleep too hot saterday night, and ended up back in the ER Sunday night, once more struggling to breathe. THis time we got or Vapo, humidified O2 and were admitted overnight. THat was fun! I find great humor in this overnight admission. We had come into the ER at 10: 15pm, we made the decision to keep us overnight at 1am....we found a room and got into a room by 3 am....by the time we had the nurses in to do vitals, the floors docs to do an initial eval, and the docs for my medical practice come thru it was 5: 15 am. HAHAHA! I thought, we will be discharged with morning rounds at 7 am...ok, they rounded on us at 10am, were discharged after another shot of Decadron, which by the time we got the shot and signed our discharge papers, it was 11:30 am.

By the time I got to bed last night and fell alsleep, I had been up awake for over 40 hours. I realize now how these doctors do it...after a certain point you are soo tired you work on overdrive.

No tonight, I plan on going to bed nucie and early with no distractions, no interruptions.

Oh, did I mention my James woke up this morning with a croupy cough?

Hmmmm...I wonder if all the other new residents know what to do with croup? I think I will leave it to someone else to test them out. For now I have had my fill of doctors and hospitals...

ooops, I almost forgot I have a Cardiology appointment this afternoon at the hospital...YIKES!

I need a vacation!

Harriet Houdini

2007-06-24T20:15:00.000-04:00

Ahuva has a new nickname - Harriet Houdini. You've heard of Harry Houdini, the famous escape artist who could get himself out of almost any predicament possible? Well, Ahuva has a new trick, that allows her great freedom, and is really impressive. Are you ready to hear what it is? Let me give you some clues and see if you can add them all up:

She has mastered wrist rotation!

She has added to that the pull of the upper body -

and the stepping backward of the lower body which in turn allows her to

....are you ready?

...Are you sure?

...OPEN A DOOR! Yes ladies and gentleman, she has mastered opening a regular door knob! No longer can she be coraled by any ordinary door knob...for now she is master of her domaine!

YIKES! Am I in trouble or what?

Tin

2007-06-22T17:04:00.000-04:00

Today is our 10 year wedding anniversary. No I did not get tin for my gift - thank you smart hubby! I got the modern ten year gift - diamonds. A beautiful ring to symbolize our eternal love -- sorry to be so mushy, but hey isn't that the whole thing about diamonds? I already know that they are definitly a girls best friend....
For my hubby I replaced his lost wedding band. I thought that would be appropriate.
Honey, I love you and here's to Ten more years..
love ya!

James Big Day

2007-06-13T12:52:00.000-04:00

Doesn' t that sound like the title to a Thomas the Tank Engine Story?

But I digress...Today was James end of year party and play in school. Even though they have school til the end of the week, the teachers did a great little play and song thing for the parents. It was so cute, and the kids all had worked so hard! James did a great job singing aling (ok to most of the songs, he is a little shy about his speech). He did do all the hand motions.

After ward, James helped his little sister explore his classroom, introducing her to everyone, "this is my sister Ahuva!" He helped her climb the stairs to the "tree house" . He made sure she held the railing and reprimanded a fellow classmate for pushing past her. HE told them, "you'll make her fall and crack her head open! She is slow, you have to say beep- beep"....ahhh out of the mouths of babes!

It is so nice to see the two kids getting along so nicely, helping each other out. Even better is that James has a sense of his little sister doing things more slowly and is willing to protect her. I am so pround of my big boy! HE has really grown and become quite the young man,.....not if we could do something about the dirty clothes left on the floor..well, I guess I have to leave somehting for his wife to deal with?

James even insisted on a picture with "mommy, baby and sissy too". I can't beleive we are heading to Kindergarten next year...boy does time fly!

The Big Trip

2007-06-13T12:31:00.000-04:00

We went to the wonderful city of Detroit, Michigan for two days to visit my niece and brand new great nephew. In other words my neice had a baby boy and we went to check him out. He is so yummy, small at 6 pound 14 oz - ok not so small, but compared to my moster baby he is small. My niece looks great for having had number three a week ago, and the two other kids are adjusting well. The trip in wasn't bad at all. My kids travel so nicely, which is a good thing, as the Mother-in-law came with us. I am sure that my Hubby will blog about the trip...I will just skip to the fun parts.
We stayed at a hotel so that we didn;t impose on the new mom, and it made it feel like a mini-vacation. When we got to the hotel, the kids, my husband, mother-in-law and I went swimming. What better way to go swimming then indoors, where you don't have to mess with sun scream (oops...that's sun screen, to you we call it sun scream cuz the kids usaully end up screaming at some point during the application...'honey, did you put it in the kids eyes again?") They had a blast, especially miss amanda, who thanks to school and her teachers LOVED the water. She was so mad when it was time to get out. She has no fear fo the water at all...ahe just wants to jump right in!
Baby Alistair even got in on the action, with daddy taking him in for a spin around the pool (unfortunatly I can only put soo many pictures in a post...perhaps Daddy will pout that pic on his post?!)
While we were there, we decided, ok I decided, that we should take the kids to the zoo before we left...you know to tire them out so that the trip home would be a breeze? Let me tell you it worked! The only problem with my plan is that then we, the adults were all exhausted too!
The Dertoit Zoo is amazing! First of all, our zoo here at home is filled with hills and alot of cement. The Detriot zoo, is, well Flat! Not too much cement, and fun! We went to the Polar bear exhibit where you can walk under the water and watch the sea lions and polar bears swim over you and around you...very cool. Amanda loved it so much. She was a little distracted by the water reflections since it was a sunny day (92 degrees baby!) but when the sea lions came up, she was watching intently.
After the zoo trip, we hopped in the car, fed the kids and watered them up, got on the raod and headed home. We made in good time stopping two times. THe kids, Ellie, James and Alistairt slept most of the way home, while Peanut was awake and glued to her TV scrren, not sure how on earth we managed to get Blue's Clues in the car. Hey, whatever works, right?
All in all it was a great trip, kids behaved, I behaved, you know a little mint chocolate chip ice cream will get you along way ion my house!

Holy Shoes!?!

2007-06-10T14:45:00.000-04:00

Since when do childrens shoes cost $100? I remember the good old days when my mom would take me for shoes. The most expensive ones were $50- $60 and man that was alot of money back then. I remember she splurged a couple of time for weddings, on good pairs of shoes.
We went for a walk today ( in an effort to save gas - besides it was nice out) to buy sandles for the kids. School is over the end of the week, and it is time for their toes to get a breathe of fresh air. Miss Ellie has narrow heels and need to be fitted in a good shoe. MrJames has a double wide foot, and Miss Peanut needs good arch and ankle support. So this is one family that can't shop for shoes at Wal-mart. Miss Ellie found pair of cute shoesshe really liked them until I saw the price tag...$100.."um, Ellie perhaps you like the OTHER shoes better?"
We came home a little lighter in the wallet, but the kids have great fitting shoes. Ahuva had to have hers ordered from Zappos, as the store didn't have her size in stock.

NOTE: So the shoes we ended up with are NOT the ones pictured above. Those are the $100 shoes she wanted...I guess sshe'll start saving her allowance up for next year....

Goodbyes...for Now

2007-06-09T22:06:00.000-04:00

Yesterday was Peanuts last day of school. Although she had only been there for a short time, about a month, we fell in love with her teachers , therapists, staff and friends . She has grown tremendously - in personality, social skill, and developmentally. Amanda has managed to find new ways to explore her environment. Peanut has become a student and a teacher. She has taught fellow classmates to open doors to explore other environments (ie she taught them how to run out the room and down the hall, shrieking with delight). She has discovered that she can help her classmates learn how to participate in self help skill, by encourageing wiping their mouths after a meal. Amanda has also learned how to blow kisses from one of her new, dear friends. Not to mention shoe shopping by offering 'lost shoes' to those without shoes on. My little one has grown tremendously independant, wanting to feed herself, and getting very mad when you try to do it for her. Music is her newest love, dancing to the rhythm of the beat, coaxing her baby brother on by grabbing his hands and helping to to 'dance' along. Let's not foget the finger isolation and extention - she points at what she wants and says 'uh-uh' patting you until you give it to her. If she knows the sign she'll sign for what she wants...all while smiling that adorable smile, that which melts all hearts.
We will miss everyone over the summer...those who will be back for our special summer session, we look forward to seeing, everyone else we can't wait to see you in the fall. Amanda has taken to school like a fish to water, thanks to all your love and support. Thank you for being there and for being so caring. Enojoy your summer...and KEEP IN TOUCH!

A Tale of Two Lenses

2007-06-08T10:34:00.000-04:00

So you've heard of the famouus Charles Dickens novel A Tale of Two Cities? Well, here's my version of the story. A Tale of Two Lenses.

This morning we got dressed as usual, put her lenses in and headed downstairs to get ready for school. Shce sat at the big table, to eat her Cheerios. Then, while my older two headed outside to play on the deck, she followed. I checked her eyes before she went out, and her lenses were still in. After getting lunches organized, kids shoes on, and putting car seats in the car (I traded cars with the ubby cuz my radio was on the fritz..that's another story) I gathered everyone up and checked her lenses one more time. Low and behold she was mssing, not one but BOTH of her lenses. OMG! I thought I was losing my mind! I knew I had put in both her lenses this morning, at least I had thought I had, didn't I keep checking her eyes for them?
I asked Ellie if I had put them in...she must have thought I was nuts, as the look she gave me as she said, " yes you did mommy, remember?"...I guess I didn't want to face the reality of what this meant, that she lost TWO lensses at once. The repurcussions of such an event would be , well, not good. It would mean more money shelled out for lenses. Two weeks after having just gotten these, means these haven't been paid off yet.
I spent 45 minutes crawling around looking for them, to no avail. Disappointed, upset, bewildered I put on her back up glasses (the really thick bottle looking ones) and set off to drop her off at school.
I can't beleive we are going to start the last day of school like this - late and minus our contacts. It was bad enough she had broken her glasses for ontop of the contacts last week and worse still that the frames had been discontinued and I can't seem to find them anywhere! Now this!? COuld she possibly have eaten the lenses, while partaking in her breakfast? Mmmmm, these Cheerios are extra crunchy this morning mommy....
I dropped her off, and returned home to crawl around for another couple of hours and guess what! You awill never believe it...I FOUND not one, but BOTH of the lenses. One was on the deck under the patio furniture, and the second was at the edge of the deck where it over looks the car. Amanda had been standing there watching me put the car seats in.
My luck was greater then great, as I found them before it started to rain cats and dogs.
Now my only dilemma was which lense went in which eye, as they had not marked this pair with the customary dot. I found an optomitrist who was able to read the lenses and give me his best guess as to which one goes to which eye. I also have the prescribing physician sending me a new set, so that the ones I found will become extras, as we are not 100% sure which one goes to which eye.
Boy, with all the excitment we had today I hope tomorrow is a bit duller.

First Tooth for Baby

2007-06-07T16:41:00.000-04:00

Today, Baby Alistair cut his first tooth! He has been so incredibly cranky these last few days. I even had ENT look at his ears to make sure he didn’t have an infection. He just was not himself. Finally I noticed in his little mouth the nub of a first tooth! YAY! He is 5 and a half months old, and has his first tooth, with a second not far behind!
He is also trying so hard to crawl. Yes, I said crawl. He gets himself moving, although usually backwards, but he wants to go go go go go! Alistair will turn a complete 180 degrees on the floor. Which means Peanut comes over and moves his toys behind him…but he still gets them. Wait until he is really moving, she is in for a rude awakening. She is so funny..miss Amanda thinks that Alistair is a ride…tally ho there cowgirl..wait that’s not a horse that’s your baby brother!

Blast from the Past

2007-06-06T09:41:00.000-04:00

An old family friend was in last week visiting...ok really he was on his way back home from a conference and made a pit stop here to see the crew. Dr. Bill , as we fondly call him, has known me for the last 16 years...watching me grow up, get married and start my family. It was cool to see him again. The last time I saw him was before Brian and I got married. We spent Christmas with him and his family while we were still dating.

So we, Baby Alistair and I had lunch with him and my parents then after making our rounds picking kids up from school, the family came back to my parents for dinner with Dr. Bill. We had a great time catching up, and yes, dare I say it , reminiscing (do I feel old or what?) I used to think only really really old people would spend their time remembering the "good old days" Well, I guess that means I'm old! Here's a Pic of Dr. Bill with my big Baby boy, Alistair. At 5 months old he is wearing 18-24 month clothing. I can barely lift him in his little car seat carrier..Dr. Bill couldn't hold him for too long either. Don't feel bad Bill...Brian can't hold him that long either. About 2 minutes is his max time!

Beach Party

2007-06-06T09:38:00.000-04:00

Yesterday at school, Amanda's class had a Beach party. They laid out beach towels and had a grand old time at the "beach". Her teacher told me that my little one laid down on the towel, spread her arms and legs wide and laid there. Then she moved to the next towel, and repeated this, but then rolled over onto her back and laid there...taking a suntan, I suppose. Daddy...I think Miss Amanda wants to go to the beach.....what do you say?

Rub -A-Dub-Dub

2007-06-06T09:32:00.000-04:00

The other day when I pickd up Miss Amanda the teachers had a fabulous tale to tell of my little ones adventures for the day. Apperently she got into the bathroom when no one was looking. She made her weay to the sink, climbed up on the stool, turned on the water and got soap from the soap dispenser. She proceeded to wash her hands like a good little girl. Very impressive, as the first day of school she could do no more then climb up on the stool.
The problem that lies therein, is that last night before bathtime, Miss Amanda got into the bathroom when I wasn't looking. She made her way to the toilet and was "washing" her hands. I think we still have a little work to do here...what do you think?
I should note that she thought it was the funniest thing ever! and was very proud of herself...

Picnic Day

2007-05-30T20:21:00.000-04:00

Today was Amandas school picnic. The theme was Cruising, and the staff had worked so hard to make everything seem like you were on a cruise. They transformed the garden on the school campus to be a cruise ship...all aboard!

We set sail, on a mildly warm...ok somewhat hot..you only felt hot if you were moving.....

It began by you walking through a doorway with streamers hanging down, blowing the the wind.

You came onto the main deck with a "bar" where you could make your own pina coladas (ok we are talking preschool here, so they were kid friendly pureed drinks with ice). There was a pool where you could stick your feet in to get wet...probably the only time of the year that you were allowed to go in the fountain (a real fountain that they have in the corner of the beautiful garden on the campus of the school). Once 'on board' with a cool drink in your hand you could make your own cruise hats...Miss Amanda made herself right at home...being the cruise director, followed by socializing...ie she made her rounds waving hi to everyone in the area....

Picking out a hat and having one of her teachers, Miss Nina personalize it, complete with pink dots!I think it rather makes her outfit, don't you?

Ahhh....the best part for the kids (or maybe the adults?) was the pie throwing. They had a pull string pie thrower that the kids could pull on the magic key and the whipped cream pies would fly across to smack the teachers on the face. The teachers wear goggles, and get to spend the rest of the with whipped cream in their hair...Fun! The teachers are so kind...they MOVE to make sure they get hit! What fun! I think the staffers had as much fun as the kids did! Here's one, with a pie ready to hit its target...DUCK!

They finished the day out by heading inside the building to an air conditioned all purpose room to have a wonderful lunch (you should have seen the spread...hamburgers, spaghetti, salads, fruits, cookies...the works, like a beautiful buffet you might see on a cruise) and watch The Little Mermaid and hang out for a while. It was so nice to see all the kids playing and socializing (especially my busy body...Peanut made it her job to check out what everyone was doing, eating, even the buffet down the hall was not outside her scrutiny).

I think everything passed! She had a blast and I was thrilled to be able to participate....What an amazing, talented staff the school has...I wonder what the theme will be next year?

Memorable Memorial Day

2007-05-29T09:31:00.000-04:00

Hi there everyone! Peanut is so glad you stopped in to see how our weekend was. She hopes, as we do, that you had a great weekend too.

This weekend on Memorial Day we had my parents and siblings over for a big BBQ. We had the cows running for the hills (my apologies to any vegetarians out there). We had ribs, burgers, hot dogs, steaks of everykind imaginable. Lots of MEAT. Funny thing is my youngest sister is a supposed vegetarian...she ate lots of meat, I guess everyone needs a vacation every now and again.

The boys got up early to go fishing on Sunday (see my husbands post on his blog, called Gone fishing : http://downsyndromelife.blogspot.com/search/label/Fishing

We girls stayed home and hung out cleaning house,doing laundry, and shopping, of course!

Peanut cooled off with an ice cream cone, and polished the whole thing off on her own, no assistance needed..now that's MY girl! She signed ice cream, and then signed please! What a polite little girl I have. Funny thing is that when she was doen eating her cone, what does she sign..."MORE" of course!

She ate it so nicely, with little spillage...can you tell who has been in therapy for too long? I gues that kinda comes with the whole package. I wonder If I can apply for that honorary masters in OT, PT, DV and speech...wouldn't that be nice? I'm sure anyone with a child with special needs feel that they too should get an honorary degree in whatever specialty that they have had contact with...let's start a movement...all for it say 'aye"....

After the ice cream, it was time to cool off in the pool of course. Siblings James and Ellie enjoyed too...of course Alistair is hanging out in the background, as usual, trying to make his way over...he is getting so close to moving. At 5 months I am amazed as Peanut did all this later. You forget when and how quickly they do things...

Hope you hade a great weekend. We did.

I'm Waiting.....

2007-05-22T19:19:00.000-04:00

Miss Amanda has a new routine for getting ready for school in the mornings. She has the habit of getting up, dressed, teeth brushed, hair done...all rather quickly while trying to run to the gate to go down stairs. I hurry up and get all the other kiddos and myself dressed cuz Peanut is banging down the gate...trowing things down like shoes or brushes, trying to make us all move a little faster. Once we make it down stairs, she heads to the kitchen to stand in front of the fridge and 'Uh, uh...Uh" pointing at the fridge. What could she possibly want from there...I know she's hungry, but every morning, without fail...I know she looks so deprived ;) Anyway, I open the fridge and she trys to climb in there. The funny thing is that the door almost closes with her in it...we have to really be careful. What does she want? Of course we can't forget her lunch box! She hauls it out, and practically runs to the front door where she stands, waiting to go to school.

In fact, she gets really REALLY mad when I take her back to the kitchen to eat breakfast. Funny girl, she just loves school so much that she can't wait to get back!

I cannot tell you how relieved I am! She is my first kid who has gone to school without putting up fights, tears and tantrums. This I can handle...this ready to go NOW!

I wonder how she will react when I tell her she can't go to school tomorrow? She is not going to like me.

Ironically, my Elle, is quite the opposite, begging to stay home, even feigning sickness to stay home...I'll take the 'I'm waiting, hurry up mommy" Any day.

Now if only she would TELL me that she wanted to go..... ;) I guess we have something speech can work on...

And it is really REALLY important that we not forget her special pink with stripes lunch box.

She carries it into school like a badge of honor. Even "shopping" with it in school. My little one takes her shopping cart complete with said "purse" and shops her way to eat her morning snack after stopping to share a toy or two with one of her new friends.

Ahhh...behold the power of pink!

Thrill of the Chase

2007-05-21T19:33:00.000-04:00

My husband came in looking for Amanda's toothbrush, so she could get ready for bed. "Honey, where's Peanuts toothbrush?". Nursing Alistair, I proceed to respond, "it's where we always leave it when we are done brushing our teeth...in the bathroom. I think?" Hmm...that is a good question, I am pretty sure I put it back when we were done brushing our teeth this morning, but it was such a long time ago and so much has happened, who knows?
B leaves, and comes back empty handed. "Peanut where is your tooth brush?"
She looks at us and smiles walking out of the room. B follows her, and you can hear stuff being shuffled around in the other room. Once again, B returns empty handed.
He starts picking up laundry, looking under the bed, lifting the bed cloths looking for that elusive tooth brush. The one that grew legs and ran away right after Amanda finished brushing her teeth this morning. B opens the drawer to the night stand, pushes aside some books...still no tooth brush.
By now he is starting to get a little irritated. Still nursing the baby, I smile and offer some words of encouragment, " find it yet? How hard is is to find her tooth brush?"
Pushing aside the top of the clean laurndy that is stacked up waiting to be folded - pulling the basket away from the wall....AHA! The elusive tooth brush is found! "See honey, right where we always keep it!"
B gives me a dirty look...I smile.

Smiles....

2007-05-18T16:19:00.000-04:00

When I drop Amanda off to school, she has a big smile on her face. In fact she likes to stand waiting by the front door holding her lunch box ready to go to school. When I go to pick her up, she comes out with one of her teachers with a big big BIG smile, still grasping her pink lunch box.
She carries it around in school, "shopping" with the shopping cart.
I am so glad that she is enjoying school. What a releif!

The Last of the Great Over Achievers

2007-05-16T21:05:00.000-04:00

Well, as you get older and realize that life itself is more important then grades, that is when a "C" is the best grade ever. Before this term I would have been very disappointed in my "C", I have grwon up. Now that "C" is a badge of Honor. I got a "C" in Chemistry II, having gone back to school with a three week old baby, and continuing to go to class until last week, finishing the term with a very sqwuirmy 4 and a half month old. I was sleep deprived, brain dead and heading toward the psych ward part way through the term, thinking I would never make it. But...I did it. Not the best of grades, but I did it and I am proud of it.
Now I can focus on my kids and house for the next two months before I disappear into the depths of medical studies....At that point a "C" will no longer be acceptable. I will have backslide into my old world of youth...where A's count and B's are ok...who says we have to be old forever? Besides I can be young without Botox!

PS I still say that that mean wicked CHEMISTRY II teacher refused to give me my B because she wanted to prevent me from getting into my program...see we started the class with 25 students, only 9 of us were left to take the final. Everyone else dropped the class. Honestly, I thought about it. Dropping the class that is, but I decided to hang in their and just do my best. So I did. I lived, ate and breathed CHEMISTRY every waking minute that I wasn't in therapy with Amanda I was doing CHEMISTRY. When I was in therapy with her, all I talked about was CHEMISTRY. It was very, very sad that my life revoloved around CHEMISTRY. If I see the word CHEMISTRY again, it will be all too soon. Funny thing is is that people say my Hubby and I have a lot of CHEMISTRY...AAARGH!!!!!

PPS I got a B in genetics...My little angel, who happens to have Downs syndrome taught me everything and them some!? My B proves it...YAY!! Thank you precious Amanda...thank you.

New York Times Article on Down Syndrome

2007-05-09T09:09:00.000-04:00

This is in today's New York Times Newspaper:

May 9, 2007
Prenatal Test Puts Down Syndrome in Hard Focus
By AMY HARMON
DETROIT — Sarah Itoh, a self-described “almost-eleven-and-a-half,” betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.
She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.
“I am so lucky I get to do so many things,” she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.”
Sarah’s appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.
Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age.
About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.
Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.
They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a “first call” network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.
The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.
“We want people who make this decision to know our kids,” said Lucy Talbot, the president of a support group here who prevailed on the hospital to give Sarah and two teenage friends an audience. “We want them to talk to us.”
The focus on the unborn is new for most parent advocates, who have traditionally directed their energy toward support for the born. But after broader testing was recommended in January, the subject began to hijack agendas at local support group meetings.
A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain.
“The impact of these changes on the Down syndrome community is going to be huge,” said Dani Archer, a mother in Omaha who has set aside other Down syndrome volunteer work to strategize about how to reach prospective parents.
The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49. As adults, some hold jobs, but many have difficulty living independently.
“There are many couples who do not want to have a baby with Down syndrome,” said Deborah A. Driscoll, chief of the obstetrics department at the University of Pennsylvania and a lead author of the new recommendation from the obstetricians’ group. “They don’t have the resources, don’t have the emotional stamina, don’t have the family support. We are recommending this testing be offered so that parents have a choice.”
But the richness of their children’s lives, parent advocates say, is poorly understood. Early medical intervention and new expertise in infant heart surgery stave off many health problems; legally mandated inclusion in public schools has created opportunities for friendship and fostered broader social awareness of the condition.
With no formal financing or organization, parents are arranging to meet with local obstetricians, rewriting dated literature and pleading with health care workers to give out their phone numbers along with test results. Medical professionals have for the most part responded with caution. Genetic counselors, who often give test results to prospective parents, say they need to respect patients who may have already made up their minds to terminate their pregnancy. Suggesting that they read a flyer or spend a day with a family, they say, can unnecessarily complicate what is for many a painful and time-pressured decision.
Their goal, parents say, is not to force anyone to take on the task of parenting a child with disabilities. Many participants in the ad-hoc movement describe themselves as pro-choice. Yet some see themselves as society’s first line of defense against a use of genetic technology that can border on eugenics.
“For me, it’s just faces disappearing,” said Nancy Iannone, of Turnersville, N.J., mother to four daughters, including one with Down syndrome. “It isn’t about abortion politics or religion, it’s a pure ethical question.”
Others admit freely to a selfish motive for their new activism. “If all these people terminate babies with Down syndrome, there won’t be programs, there won’t be acceptance or tolerance,” said Tracy Brown, 37, of Seattle, whose 2-year-old son, Maxford, has the condition. “I want opportunities for my son. I don’t know if that’s right or wrong, but I do.”
Ms. Brown has taken it upon herself to serve as a community resource on Down syndrome for prospective parents. She was encouraged when a counselor at the University of Washington Medical Center sent her an e-mail message recently with a question from a patient.
What developmental age equivalent, the patient wanted to know, do most people with Down syndrome reach?
For parents on an e-mail list where Ms. Brown solicited answers, the question underscored the difficulty in conveying the pleasure of parenting a child with Down syndrome to someone who has the option to reject it.
“Verbally,” wrote one mother of her teenager, “she’s at a 6-month level, but what 6-month-old do you know who can climb out a window and dance on a roof?!?!? We joke that she could climb Mt. Everest.”
“If someone had told me Sam would still be in diapers at age 5 — ugh — I probably would have died,” wrote another. “Living through it, not such a big deal. Because you don’t give birth to a 5-year-old, you grow with and love this kid for five years.”
Doctors have long recommended an amniocentesis test for pregnant women 35 and over, whose age puts them at greater risk for chromosomal defects. But because it carries a small risk of miscarriage, it has not been routinely offered to younger women, who give birth to the majority of children with Down syndrome.
Now, with a first-trimester sonogram and two blood tests, doctors can gauge whether a fetus has the extra 21st chromosome that causes Down syndrome with a high degree of accuracy and without endangering the pregnancy.
But many parents see expanded testing as a step toward a society where children like theirs would be unwelcome. The Newsweek columnist George F. Will labeled it a “search and destroy mission” for a category of citizens that includes his adult son, Jon Will.
Dr. Brian Skotko, a medical resident who has studied how mothers were told of prenatal diagnoses, found a high level of dissatisfaction. He said that most doctors have little or no training on how to relay a prenatal diagnosis of Down syndrome.
When he talked to obstetricians, geneticists and medical students at Massachusetts General Hospital in Boston about the subject last month, though, he was questioned sharply.
One doctor asked about studies suggesting there is a higher risk of early-onset Alzheimer’s disease in people with Down syndrome, potentially saddling parents with another caretaking burden as they themselves age. Others take issue with the notion that they do not give parents a balanced portrayal of the condition.
“It’s a mistake to say ‘your baby is going to be mentally retarded, you should have a pregnancy termination,’ ” said Dr. Allan Nadel, director of prenatal diagnosis at the hospital. “By the same token, I don’t think it’s quite fair to say ‘these are wonderful lovely human beings, you can deal with all of their problems and it’s not that big of a deal.’ We strive to have the proper balance.”
Parent advocates have some advice: don’t begin with “I’m sorry,” or “I have bad news,” as many of their own doctors did.
Weeks after Patricia Lanter decided to continue her pregnancy, having learned that Down syndrome had been diagnosed in her fetus, her doctor reminded her that she could still get an abortion in Kansas if an ultrasound indicated the baby would need heart surgery. Ms. Lanter, an emergency physician from Norwich, Vt., has secured an invitation to lecture the obstetricians in her hospital this summer.
In Wilmington, Del., Kristin Pidgeon recalled her doctor’s gloomy forecast for a local hospital audience: “She may be able to count change for the bus,” he had said of her as-yet-unborn daughter. “But what’s going to happen when the bus doesn’t come?” (Her daughter Aliza, now 5, does not yet take the bus, Ms. Pidgeon said, but she does ride horses as part of her therapy.)
In the Detroit suburbs, Ms. Talbot is still working out the best strategy to drive her points home to medical professionals. When one doctor suggested she had chosen to show them only “high-functioning kids” like Sarah and her own daughter, Megan, she asked Trevor Taylor, who lacks the ability to communicate verbally, to join the lineup.
At the Henry Ford visit, Mr. Taylor, 19, a natural ham, acted out his speech as Megan, 18, read it, before hitting the music and signing along to “What a Wonderful World.”
At the end, he blew a kiss to the audience. Then he hugged his mother.

Farewell, dear friends

2007-04-22T21:30:00.000-04:00

This week we say goodbye to our Early intervention therapists. Those that have been with us from the time Amanda was a few months old, through good times and bad. I knew that this day would be here sooner rather then later, but I was unaware of how truly sad I would be to see everyone go. They have been thru everything with me and my Peanut...her constipation, pnuemonia, vision issues, surgeries....add in all my neurotic worries about walking, talking, eating, you name it, I have vented/stressed to my therapists. They not only have given my daughter the best therapy sessions pushing her to her greastest potential, they have been my ear that I could bend. I can tell them my deepest worries without judgement on their part. They have seen it all. Willing and able to give advice or comiserate (spelling?). What next? How well will the next set of therapists stack up to such amazing providers of OT, PT, Speech, Developmental, vision and nutrition...like we have been so lucky to have had help us. Well, we will let you know...as we start school on Monday next week...I'll fill you in.
On a final note, if my "TEAM" is reading this, you are all amazing people, god sent, truly gifted talented caregivers, and any child who has you as their provider is blessed.
Though words are not enough, to express out gratitude, THANK YOU!

School decisions...Good news

2007-02-18T21:38:00.000-05:00

So here’s the update:

I got to my meeting 20 minutes early, as parking might be tricky with all the snow we’ve had lately, only to get a spot right in front of the school…however, I soon learned that they did not have the handicapped entrance on this side it was clear on the other side of the building…I gave up and shlepped my double stroller, complete with infant seat (little brother Alistair, 7 weeks, came with) and miss Amanda up the steps only to then spend four very long hours (the meeting was only slated to be two hours) with testing for Amanda and discussions, before we finally left.

I was not too sure where we stood when we left the meeting, I just knew that I had made sure they knew that I wanted Amanda to attend the private school best equipped to deal with her vision issues, as they are best equipped to give her the intensive vision training she needs. Which ironically, the vision person agreed she needed, but felt it was a toss up whether they could provide the services of if we needed to go to the private location. I made my points (that unless they could provide me with an aide to be with my child for every minute she is in school who is trained in vision, that she needs to be at the private school ). I happen to know that there is no such thing and if I can demonstrate that they can’t provide the services she needs, then they HAVE to send her to private school.

Her vision at best correction is 20/80…without correction she is 20/400…she essentially is low vision, not blind, but because her vision changes based on which glasses she wears, she needs help learning to see and adapt herself to her vision. But I digress…Basically after the meeting, I thought there was no way I would get her into the program because the public schools loses money if they send her there. First of all they kept telling me how she needs to be in a room with typical peers, and they felt the school for the blind would only old her back. Instead they were recommending a classroom of reverse inclusion, where the five kids there now who are all older then my daughter, all have cognitive delays, and no vision issues. Basically that not only would I be holding her back with her vision, but now I would be limiting her cognitively as well. I know my child is not a rocket scientist, but come on!! What a lame argument!
To make matters worse, at the meeting they were recommending that I send my child to a VERY high risk neighborhood, if the police see a white chick there, they stop you and tell you you need to leave (I am not kidding!! My PT had it happen to her as did my OT),...even my Black nanny wouldn't go to to that neighborhood! So I came home discouraged and trying to figure out if I could come up with the tuition money myself for private school.

Adding to this, there is a sheet you have to sign that you attended the meeting, and the diagnosis for which she requires services based on their evals…they wanted me to sign it or they can’t prepare for the IEP. I did what you said, I read the darn thing, took my time (15 minutes) and found a MISTAKE!!! They put that she ahs a vision impairment, and developmental delay as reasons for service, which is accurate. However, when listing the services, they put developmental as the main header with PT, OT, ST, Mobility training and vision was last all as supportive services…WRONG!!!! I said so too. The vision person agreed that vision should be right next to developmental as the main services with everything else as supportive. They made the correction, albeit begrudgingly. Then I signed it.

Friday afternoon, less then 24 hours later, a record for pgh public from what my EI therapists have told me, I get a call from the public school- they agreed to send Amanda to the private school! They will pickup the tab!!!! Not only that, but they called the school to see if they have room...they had one spot left, which they gave to Amanda ( I had called over there after my meeting on thursday to the director of the program, to give her a heads up that she might be getting a call from the public school, but that I wasn't too sure, just in case). Turns out the director saved the spot for Amanda, as the spots are available on a first come first serve basis, since I called the day before I beat another family to it!!!

OMG, I cannot tell you how relieved I am! I can relax about her vision issues they will address them to the umpth degree...meaning later she hopefully will need less services. Besides, they have this great policy if they lose a lense, the school will replace it for me! Won't my insurance company be happy.

I don't have to tell you 'cuz you know me pretty well to know that I stuck to my guns, refused to take no for an answer, and guess what it worked! Some people may say that I am too headstrong, and maybe to a fault, but here it worked to my advantage. It could have easily backfired, but I guess they saw I would only be a thorn in their side until I got what I wanted (truthfully I made a really good case)..what ever it was....

WHEW!!!!

We have our IEP meeting scheduled for March 8…we were given the follwing recommendations at the transition meeting for services weekly:

2 hours direct + 30 min Consultatory PT
1 hour direct OT
1 hour Direct Speech

Here's hoping for more great news after her IEP in march...ttyl

Just Another Day

2007-02-07T21:24:00.000-05:00

Just another day at home with the kids...Alistair is getting pudgier by the minute...fitting in quite well with the older kids and their baby photos. Alistair is ready for his meat and potatoes as you can see... he is 14 lbs 12 oz now, at just 7 weeks of age (breastmilk only)!

Big sister, Miss Amanda, loves her baby now. She asks to hold him, by signing, and will "love love her baby" by holdinghim tightly and rocking side to side, before trying to bite him (i think its her kisses) and then pushing him away. She's come a long way!
Aaaaah.....brotherly love...James decided to help Dad out the other noght while I was out at school, by giving Alistair his bottle....too bad he can't be this angel like all the time...all helpful and not makeing trouble. I guess it makes these moments all the more special.
I've been busy with my head buried in chemistry books and genetics for my last two pre reqs before I start my program. Then I have had to deal with Strep that has been making its rounds in our house since the baby was born. It is a vicious scycle of drug, strep, drug strep...I am so hoping we are done with it now...not a fun circle to be stuck in.
Amanda has had one eval for her transition for PT today, we got the recommendation fo two hours direct Pt and half an hour consulting...I think that's pretty good. Anyone out there have any experiance with IEP's?
I'll try to post more frequently, but please don't hold your breath, I don't want that on my concisous!

Lawsuit to ensure inclusion for students with DS

2007-01-29T14:47:00.000-05:00

NDSS Partners with New Jersey Families and Affiliates in Lawsuit to Ensure Inclusion for Students with Down Syndrome

New York, January 23, 2007 The National Down Syndrome Society (NDSS) has been named an organizational plaintiff in the class action lawsuit Grieco et. al v. New Jersey Department of Education et. al. The lawsuit alleges that New Jersey is in violation of IDEA requirements that a student be placed in the least restrictive environment appropriate for individual students. The complaint also alleges discrimination in violation of the Americans with Disabilities Act (ADA).
In addition to NDSS, the plaintiffs in the case include three children with Down syndrome, their families, TASH, New Jersey TASH, The Family Alliance to Stop Abuse and Neglect, and the National Down Syndrome Congress. The lawsuit alleges that students with Down syndrome have been denied an inclusive education, denied additional hours of inclusion and not received appropriate supplementary aids and services to support inclusive education. Andrew Hamelsky, an attorney at White and Williams LLP in New Jersey and Barbara E. Ransom, with The Public Interest Law Center of Philadelphia, are co-counsel on the lawsuit.
NDSS joined the lawsuit to provide support to the families involved with the hope of promoting systems change in New Jersey and opening more doors to students that want to be educated with their non-disabled peers across the country. NDSS Affiliates have traditionally been, and remain, uniquely positioned to provide a voice for students with Down syndrome in the governmental and judicial arenas regarding education policy.
Contact: Ricki SabiaNDSS National Policy Center800-743-5657rsabia@ndss.org

Tough Love

2007-01-22T18:59:00.000-05:00

No injuries were acquired during this portrait session...As you can see Amanda loves her new baby brother. In fact she helps him out with his appearance by giving him facelifts, as she is demonstrating in the photo above. Really, I promise she was holding Alistair so nicely 30 seconds before!

Here's the Foursome all together, leave it to my older son to play around, ruining a perfectly nice picture!

Here's my Pudgy Wudgy Prince...We are working on our thrid chin, as you can clearly see.

Been busy, started back to school this past week, Tryingto find the time to study, which is very hard. Especially with my Hubby out of town the last couple of days. We managed, the four kids and I to behave ourselves, and not spend too much money. I took them to see the new Ben stiller movie, they enjoyed it tremendously.

My lovely son, the Hollywood star

2007-01-18T20:34:00.000-05:00

Here's a great, inspiring article, just going to prove that the sky's the limit! http://www.dailymail.co.uk/pages/live/femail/article.html?in_article_id=425534&in_page_id=1879

Sorry about the infrequent posts, I've been a little busy latley between school and the new baby, Alistair. I don't know if I 'm coming or going anymore.
I'll try to post a better update as soon as I can.

Hello, my name is......

2006-12-25T10:24:00.000-05:00

We are pleased to announce the arrival of Alistair Park who joins his siblings Eli, James and Amanda. We look forward to sharing the adventures of the kiddos with all of you.
Here's wishing everyone a wonderful Holiday Season and a Happy New Year!

It's A BOY!

2006-12-20T12:35:00.000-05:00

We had our fourth child, a boy, on saterday December 16, 2006 at 11 am on the button. After 11 hours of labor and pushing for ten mintues...our 9 lb 12 oz 22 in long buster arrived!
My OB made it, and spent the entire labor with Brian and I, hanging out and keeping us company. He did me the favor of coming in to deliver me, even though he was not on call that night...brian and I are forever grateful!
The other three are adjusting well, I think. Time will tell definitively though.
Baby boy, will get his name on Saterday, at his circumsicion, and naming ceremony...until then you'll have to wait!
He has his nights and days mixed up, as he had when he was in utero been active between 6 pm and 5 am..he is keeping similar hours here with us. I am hoping he will striagten himself out soon, as I am exhuasted.
Will try to keep up for the next few weeks before my next classes start...
wishing everyone happy holidays.....
check out the pictures of the new bundle in brians blog at down syndrome life...

ttyl, me

Congratulations....

2006-12-03T20:13:00.000-05:00

.....you have been accepted to the Physician Assistant masters program, class of 2009!
These were the words at the top of the letter I recieved from the only program I applied to.
I am so relieved, as I went into my interview 9 months pregnant, big as ever, in a maternity buisiness suit that cost me a small fortune, wearing pantyhose (those of you who have been pregnant know how much of a sacrafice THAT was), and heels! Thank god they were able to see past my pregnancy, although I wasn't too sure they would, as they kept asking questions about it.
Three days after the interview, I got a call at eight o'clock at night from the program director giving me the official news. Which was then followed up by the very official envelope that arrived a week later. Although, it is conditional, I have two more prerequisite courses to finish next term in order for it to be really certain. Oh, did I mention the hefty deposit too? Yes, they want my money starting now. In large quantities....good thing I'll be making a good living in three years, I need to pay off the debt, plus the interest. any million dollar qget rich quick ideas?
So, I had been thinking that the interview was the hard part of the whole process, but now I'm thinking that the program may be. I have heard it is very difficult, but I am up to the challenge. One thing that my special little angel has taught me is to never give up. No matter how hard something may be, be persistent and your efforts will be rewarded. So far so good, now just in case keep your fingers crossed!
The program starts up this fall, so I need to start looking around to childcare arrangements and finalize schooling schedules for my other three kiddos. Life will be busy this year, and for the next couple of years, but we can manage.
I want to express my greatest thanks and appreciation to all my family who have been so incredibly supportive during the whole process thus far. I know I have not been the easiest person to be around, what with all the hormones (I can still blame the hormones, at least for the next week or so). But I truly appreciate all you have done, given up and worked for.
I also want to thank those friends who have also helped me out and been there for me in a pinch and in times of total freak outs! Thank you all for your support, and I promise one day you will see the rewards of your efforts...but not for a couple more years. So hang in there,

Yes, I am still aROUND, no baby yet, but getting there. Contractions, back aches, dilations all the fun end of the term stuff is going on and I am just anxiously awaiting that moment. So, I'll keep you posted on that part of life too.

I'm not a saint, just a parent

2006-11-28T14:17:00.000-05:00

This is a great article that someone sent to me from England. Check it out at:
http://www.timesonline.co.uk/article/0,,8123-2448700_1,00.html

Still aROUND

2006-10-22T07:13:00.000-04:00

It has been a while since I last posted. I have been so busy with school and chasing after the kids and trying to get myself situated for the impending arrival. As you can see (I took a picture of my big ol belly ) I am nice and round, with lots of elbow space....but getting cramped. Lately I have been having contractions up the wazzu, with increased activity levels. Could it possibly be that I am doing too much? Lets see I have class three nights a week, three kids, therapy out patient at a local facility three days a week, in home EI services five days a week, usually twice a day....not to mention the house with chores and erands (food has been scarce in my house lately, cuz I have no time or desire to go to the grocery), homework with my first grader, ot to mention my own homework....nah, I could squeeze in at least three more activities a week, don't you think. (If you cannot detect the sarcasm, you haven't read between the lines well enough). Truth be told I do this to myself, mostly because I know when Peanut turns three in April, she will lose all but three days of therapy, and I will have to find new ways to get her the services she needs. So I have pretty much been grinning and bearing it the last month...but really I am so tired of it...I was so glad that one of her therapists went on maternity leave, becuase it gives me one more hour a week to do whatever it is I do. The fact that I am totally pregnant and hormonal has nothing to do with it....it's everyone else, right? I don't mean to whine, sorry, it's been one of those nights.
Anyhow....Miss Peanut has started pulling up to stand at every surface, discovering picture frames, statues and other fun decorative items that have until recently remaining out of sight out of mind. She is cruising at many surfaces now too...now if we could just get her to stand on her own two feet (get it, ie without holding onto anything?)
We had gone to the Cleveland Clinic Cole Eye Institute back in August for the first time and have been back and forth since...they have done amazing things for Peanut and her vision. Including getting the insurance to pay for her lenses. Too bad we are fighting with them to cover the lense fittings now (I am not kidding, they had been paying for everything but the lenses, now they are fighting us on this...CRAZY!) Since we got her new contact lenses, Peanut began to explore her environment more and began to transition more comfortably in and out of different positions. What a huge difference we have seen since. Every week, it seems she is doing something more, building on her skills. I am kicking myself for not going into Cleveland sooner...live and learn, better late then never I suppose. We have also added outpatient services two days of PT and one day of speech...she seems to be responding to the PT, but the speech is slow..we'll see.
We found Signing times, and Peanut LOVES it! We just need to order it and stop playing the freebees on the website (Yes I am that lazy anymore). It took weeks for me to finally order my suit from online...it's just so time consuming and such a headache.
My oldest, Miss Elle is having fun in first grade, and loving homework...where does she come from....James is a terror at home and the perfect angel at school. He attempted to self medicate the other day. He had a boo-boo on his foot that at night his daddy puts cream on it with a bandaid. Well, James decided he couldn't wait. While a therapist was here, and I was otherwiase occupied he took the desk chair, added two stools and climbed up into my medicine cabinet to get his cream. Luckily I realized how quiet it had become and went to check on him....We have since removed all medications from the cabinet.
I have my interview for the Physician Assistant program coming up in a few weeks. I had to order a maternity business skirt suit for it....a small fortune for something I will wear once being that I will be 9 months pregnant when I do wear it. I told Brian I would wear it every day until I deliver so we can maybe get our moneys worth out of it. (Everyday for two to three weeks, so that's about $ 25.00 a day). It's actually really nice, and I ma thinking about taking in afterward to wear it as non maternity (it's as classic, plain black button down as you can get, wiothout looking like you're wearing a tent, as many of the suits and look when you are pregnant)
Brian has had his own run ins with the medical profession this last month and is making me crazy! When I start my infectious disease class I better hide my books or he might think he has some weird disease......he's been under a lot of stress what with number fours impending arrival, the three kids home with him three nights a week and his wife having to deal with ignorant people....He has been stressed, and I guess his out let is medicine I hope I havent worn off too much, there's only room for one Medical professional in this house, ME! (selfish, I know but, hey we all have our own things we like to be good at on our own, Right?
So that's what's been cooking here, busy busy busy.....I'll try to post again soon, but can't promise when, as I have a C in chemistry and need to spend more time studying.....ttyl.

Life...

2006-07-09T21:47:00.000-04:00

I have been so swamped these last few months. I am pregnant with our fourth...had a tough first few months what with morning sickness (should be called 24 hour sickness). School has been a bit more challenging since I am tired and or nauseated. But still going strong in the school department. I'm studing for a final tonight, but thought I post a quick update. Finally looking kinda pregnant, people have cut back on asking me if I've been eating too many donuts. Although I must forwarn you ladys...starbucks Caramel Frappachinos, even without the whipped cream, are VERY FATTENING. I could not keep anything down except the fraps, I gained 7 pounds last month!!!! I'm on a diet now....no more frappachinos for this gal!
Peanut had her second set of tubes put in as she failed her yearly hearing screen. We will repeat the screen in a few weeks. In the meantime she has gotten an ear infection, which she hadn't had one in almost a year. We went for our speech eval, and they did count some of the signs, the ones that they got to see. At least it was better then before. Plus we got speech outpateint two times a week...along with PT two times a week...my Peanut has got work to do!
Rest of the family is well, sick of mac and cheese and pizza, but otherwise in good health and good spirits. Here's to keeping ya'll posted,
TTYL, me

Annual Evals....aaaargh!

2006-05-18T20:29:00.000-04:00

I can't tell you how much I dislike annual evaluations. You know the ones we have to endure to maintain services for our kiddos. The ones thatthey use these horrible tests like the Battele to measure where our children stand developmentally. I cannot begin to tell you how maddening, and upseting they are to me.
We had Peanuts annual eval today. I always prepare myself for these reviews as they are so biased. If a child "ceilings out" ie gets two zeros in a row, they cannot be scored after that in that topic. The thing is, is that many children skip a couple of these levels yet can do the next three. Doesn't matter, because they have "ceiliinged out" so it doesn't count. Let me tell you about Peanuts eval. I was so excited that she met almost all her goals from last year. Only small handful were not met, only because of linguistics (ie she met them, but because of the way they were worded, she didn't). So many things that last year it seemed as if she'd never get, she did. Like self feeding with pincer grasp. Or moving around her environment independantly to play with her siblings (she butt scoots). Even communicationg her needs or wants with others was met thanks to her using 15 signs (10 spontaneously, and 5 with prompting).
The bummer of all this is that she tested lower then I had expected in many aspects, because she ceilinged out in many of the topics. For example, in verbal communication skills, becuase she doesn't SAY two word sentences, she got down graded; never mind that she signs two word phrases, like me bath, me smart. Also she got downgraded on social emotional because she doesn't SAY Hi to an adult or ASK them to play. Never mind that she hops over and waves and says "EH!" or that she brings a toy over to you and taps you on your leg until you pay attention to her.
So over all she tested at a 18 month level, but with ranges from 8 mos to 18 mos in various levels. Frustrating , irritating, yet somewhat endearing that she had come so far. Maddening that we have so much farther to go. Good news is she did great on cognitive and receptive language, bad news is I have a lot of work to do with her. So I guess I better start hopping....TTYL

Happy Mother's Day

2006-05-11T18:02:00.000-04:00

Here's wishing all the hard working, dedicated moms a very happy mother's day. I hope you can take the time to enjoy the small things in life this weekend.
I know I will be enjoying every minute with my family (perhaps wishing for a little time alone?) But enjoying the laughs, giggles, screaming, taunting and oh yes the shrieks of delight. Did I leave anything out?
I got my mothers day gift already...my grades form my first term back in school. I got A's (thank god) What better gift then to know that with three kids, a husband, job and life, I still have it in me!
Wishing everyone a great weekend filled with love, laughter and all those special things you hold dear.

Close Call

2006-04-16T21:16:00.000-04:00

So I was scheduled to go under the knife tomorrow, but I got out of it. About a week ago, my knee, which up until that point had been absolutely KILLING me, stopped. You heard me it stopped hurting. Crazy, right? to go from barely able to walk to walking just fine. God works in weird ways. I still have a split vastus lateralis, which may need to be repaired at any moment, but for now I am out of the woods.
Elle is turing six, and once again, I am behind on the whole party scene. I always think I have more time then I really do. Surprised? As I seem to be so organized in all the rest of my life...well in this one aspect I am not.
Peanut is turning two and boy has she grown up and looks more and more like a big gril. She is really changing, daily. She plays games, and is so the terrible twos, having fits when she doesnt want to do something.
James is ever the boy, getting into mischeif faster then you can say no. He is denise the menace reincarnate. Scary!
I have been busy shadowing physicians and physician assistants trying to learn as much a I can prior to my program. I am so excited, but really nervous about being accepted. Never in my life have I been so anxiety ridden over being accepted into a program. I have always had the eh, if I don;t I don't attitude. Now, being that I have no other choices for locations of programs, I need to be accepted.
Here's to keeping my fingers crossed (perhaps I should practice crossing my toes too).
I am almost done with my first term of pre requisites, and have signed up for more classes over the summer. I will be pretty busy, but I should manage.
Hope everyone has had a good holiday...ta!

Seriously!

2006-03-09T13:28:00.000-05:00

Seriously! It has been way too long since the last time I blogged. I have been so busy studying (which I should be doing right now) and trying to keep on top of the game, that blogging has fallen by the way side.
I have been in class for ten weeks now, and I am proud to brag that I have A's in both my clases! Seriously! I can't believe I have A's, with three kids, work and a crazy schedule of therapies etc. It's nice to know I am able to follow through with my goals..now I just have to keep it up.
I have been Ms. Gimp for 5 weeks now, and I have to wait five more before I can have surgery to repair my split Vastus lateralis (a muscle in my thigh). I was on crutches then finally convinced my surgeon to give me a brace, which helps, but I'm still in pain. I am not used to being so stationary that I am having trouble sleeping at night. So it will be more pain for a while now. After surgery I have to be on cturches for six weeks, no driving for a month and rehab three times a week for a while...I guess I have some scheduling conflicts I need to work out. Sounds like fun?! I am worried beyond belief, as Amanda still doesn't wlk on her own, and relys on me carrying her around.
My saving grace is my mom, who lives near by and will be helping us out...she doesn;t really realize how insane my life is, but after a week on my schedule, I think she'll understand.
Peanut is signing up a storm 12 words almost 15. She butt scoots really fast and gets into everything!
James is doing much better in the speech dept, still behind, but making great progress.
MIss Elle is reading! She is figuring out how cool it is to read books and soon I'll have her reading my books and doing my homework! Just kidding!
I have gotten swamped with patients in the last month, having to go into the office ans spending time on the phone. It's nice to make money, only wish sometimes I didn't have to work so hard...don't we all feel like that sometimes?
So that's the news from this end of the planet, busy with life...trying to stay above water. Seriously, life is crazy busy, with mostly good things.

The Tales of Two Weeks (or is it Three?)

2006-02-18T19:22:00.000-05:00

Update:
I have been so busy these last few weeks that time has slipped though my fingers and before I know it I have failed to update all of you once again. So I am taking a few minutes now to tell the tales of the last few weeks.
I have jumped into school and been very busy trying to juggle house, family and school. So far managing pretty well (thanks to my Hubby - BStrong). I managed to get A's on my first two exams...now I just have to keep them up. The battle if half won!
Kids are doing great. Peanut is pulling to stand without quing at the bathtub, gets up on her own everytime! Our PT had her baby, a baby girl ( she is such a doll) so we have a new PT filling in for us until Ms Julie gets back. The only problem is that Peanut knows the differance between the replacement and Julie..and is giving us a hard time and not working very well. OH, well. We will keep trying, but we may be given a bigger run for our money then we had anticipated.
I can't believe Peanut will be two in a couple of months! Where has the time gone?
I have kept our family busy by falling up my stairs and hurting my knee. Yes, I had a momentary lapse in memory as to how to walk UP the steps. I apparently did a ggod job on it, as it took me three weeks to get my butt in to see my orthopaedic surgoen, and when I finally went he tells me I split a muscle in my leg (Vastus Lateralis, it's one of the quadracept muscles). Basically I bought myself a ticket to the OR, but oh, by the way, they have no room on their schedule for almost eight weeks! Diod I mention I can't walk? I'm in pain? I'll just keep taking my Motrin and try not to do too much (Yeah right...mother of three here!?). The funny thing is, is that if g-d forbid it was one of my kids I would not hear of being pushed off for that long. I'd be insisting on surgery ASAP. I however, look at it as if I want to be worked on by the best of the best, I wait. The surgeon IO use is none other than Dr James Bradley, Of Steeler football fame. Yes, he is the official head MD for the superbowl winning team...beacause of him, the steelers were able to walk onto that field. So what's eight weeks of Motrin?
James is talking up a storm. He is doing so well, yet still not quite up to age appropriate speech. But aI am just pleased with the amazing progress he has made.
Elle is suppossedly having trouble in school (at least accordingh to her teachers). But I don't belive it, as when I work with hershe knows everything the teacher has just told me she doesn't know. I think perhaps she wants attention.
So that's the update...Been busy, not all good, but mostly good. Hope all is well by you all...thanks for hanging in and waiting fo rupadtes...I will try to post sooner then before...but Im not promising anything!

Steelers Get the Job Done 21-10!!!!!

2006-02-06T12:46:00.000-05:00

Ok, I admit I am not that into football, but this season I have developed an appreciation for the finer things in life. At least the last few games have caught my interst. But let me tell you, last night was awesome! I can't believe we won the super bowl (did I mention I was born and raised in Pittsburgh?)
My kids had a blast as they got to stay up later and watch part of the game with their Steeler attire on over their pj's.
The weird thing is that I am older then Roethlisberger, by a few years, and the guy played and won in the super bowl...dream big, and it can be done!
Have a great day...I know we all will here in the great city of Pittsburgh.

Tagged - Twice!

2006-01-30T21:34:00.000-05:00

You know you are out of it when you get tagged for a Meme, not once, but twice. So, to redeem myself with those who have tagged me, I am combining two different meme's, one was a 4 meme, the other was a 7 meme, so here goes nothing:

Four jobs I have had:
1. Lactation consultant
2. High school math teacher
3. Human resources assistant
4. Legal assistant
(5 Manager of Grand Central Station ie my house with all the therapists, Doctors appointments)

Four Favorite Foods:
1. Mint chocolate chip Ice cream ( Baskin Robbins)
2. Chocolate
3. Steak
4. Mangos

Four TV Shows I Love to Watch:
1. Greys Anatomy
2. Desperate Housewives
3. Good Eats
4. Unwrapped

Four Places I'd rather be:
1. Hawaii
2. Florida
3. England
4. Venezuela ( Don't ask)

Seven Movies I love:
1. Being John Malkovich
2. Much Ado About Nothing
3. Meet Me in St Louis
4. Singing in the Rain
5. Die Hard ( all three)
6. Girls Just Want to Have Fun
7. Bill Engvall: Here's Your Sign

Seven Places I have Been on Vacation:
1. Florida
2. Delaware
3. Puerto Rico
4. St Louis
5. Connecticut
6. New York
7. Detriot

Seven Books I love:
1. Grapes of Wrath by John Steinbeck
2. Trading up by Candace Bushnell
3. Great Expectations by Charles Dickens
4. Selected Poems of Alfred Lord Tennyson
5. The Odd Women by George Gissing
6. Sun Also Rises by Ernest Hemmingway
7. In Dubious Battle by John Steinbeck

Seven Things I Say
1. What.....
2. Benefit of the doubt
3. Whatever
4. Awesome
5. If I have to tell you one more time.....
6. Such is life....
7. Thank God
8. Can you say Antidisestablishmentarianism?

Seven things that attract me to people...
1. Compassion
2. Interests
3. Personality
4. Thoughfulness
5. Intelligance
6. Attitude
7. Sense of humor

Seven things I can't do:
1. sing
2. drive a stick shift
3. ski
4. tread water
5. eat raw meat or fish
6. pass up a good sale
7. Stay up late ( I need my Sleep)

I will not tag anyone, for I fear I am the last one in the planet to have not responded to being tagged yet. Have a great week everyone!

Old Friends, New Faces

2006-01-20T12:39:00.000-05:00

Well, this week went a bit more smoothly, then last week. It was back to same old for the most part. Peanut was still under the weather the begining of the week, but is feeling much better now. In fact she had a great week in therapy. She attempted to walk down the steps...don't worry, the therapist was holding her hands so she wouldn't fall. She was not scared, or worried at all, in fact Peanut wanted to walk down vs sit on her bum to go down. Now if only she'd do it on her own...in due time! Peanut also has shown her understanding of up, down, on, off, under and in and out. We have been using Weebles, to have her hold them up (she says "BUP" Yay!) or put them down. She also puts them into contaioners and takes them out with verbal cuing only! Cool!
Today was Tube day for my Elle. we went into to have tubes put back into her ears, and she did great! What a trooper! She also was famous, because we ran into quite a few of Peanuts Hospital friends. The nurses and Np's and MD's who know us from her surgeries. It was nice for Elle to have that recognition...plus I made sure to tell everyone what a great big sissy she is and how she taught her a new game. Yes, Peanut has another new trick, she runs away in tag! YOu roll a ball or toy to her, she grabs it and turns, running ( ie butt scooting really fast) away from you. She stops and looks over her shoulder to make sure you are trying to catch her and then scoots off aagain! It is so cute! Elle was excited to tell all about this new trick. Elle was a little worried about the surgery, but we played Uno and chit chatted with the staff, and before you knew it the procedure was done. Elle asked when she was going to get her tubes in! She didn't realize they had done it already.
We had our favorite Anesthesiologist ( Dr GReenberg) He is so Awsome! Good guy, and great md. Glad it is over, as I did not sleep well last night. Even though I know the procedure is not a big deak, it is still my child going under anesthesia....
Here's hoping for a great weekend with my kiddos,

Week From Another Planet

2006-01-14T18:22:00.000-05:00

I started my classes this week, and I thought things would be easy, at least as I started out. Well, the classes don't seem to be too hard (I have to work my butt off as I get back into the saddle again, but here's hoping for the best), although life at home just wasn't cooperating.
My first class was Monday night. I had a crazy day, as my oldest daughter woke up with an ear ache and the croup. So I let her stay home, but went about my daily routine of therapy, groceries and other mundane errands. The day was busy, but tolerable, until 3:15 pm. While sitting watching my son at speech therapy my phone rings. Apparently Elle was screaming and crying that her ear was really hurting. My Mom wasn't sure what I wanted to do, but Elle was really in pain, despite having had Tylenol a hour before. With no time to take her to the doctor that day, I made an appointment for the following day, but asked if they could prescribe something to tide us over. Knowing my daughter, she only does this when she ruptures her ear drum. When I got home and took a look myself, I was right. Unfortunately, even the doctors who I work with were unwilling to give us something. (darn malpractice issues) So having arrived home at 4:30 pm to make dinner, eat dinner and leave by 5 pm, I just threw my hands up, gave her a kiss and more Tylenol and went to school.
Adding insult to injury, I get to class and realize I switched the days of my classes in my Palm Pilot, and so I brought my Anatomy and Physiology books to my Biology class. So much for being organized!
The class was interesting and there were a few other moms like myself going back to school for various reasons. so I am not the only nut out there!
On to the rest of my week, Tuesday we saw ENT, who agreed with my observation that my daughter had ruptured her ear drum, and we scheduled surgery for next friday for yet ANOTHER set of tubes. The thing that kills me is that once I am a PA, techinicaly I could fill a script to tide her over....another reason to go into medicine.
Wednesday wasn't too bad, except that by the afternoon, I really though Peanut was starting to sound hoarse and was sleeping an aweful lot (sehe slept for 2 and a half hours, instewad of her usual hour). Thinking she was coming down with something, but unsure what, I kissed her, gave her a dose of Tylenol and headed out to class for the second time this week. De ja Vu?! Oh well. Class was fine, got home early and checked on the kids, Hubby did a great job! they were fed (ok, I fed them before I left) , Watered, (ok I did that too), in Pj's ( me again), in bed on time and sleeping when I got home ( Dad gets big BIG point for this, as Peanut is used to nursing to sleep, he got her down, no problems). KUDOS to Dad/hubby for his smooth transition into school mode.
Thursday was a nightmare! My Husband went to Detriot for the day, he drove both ways in the same day...crazy! While left home, I ran like crazy trying to make up time from the rest of the week with errands, studying and life. In the meantime Peanut had woken up that morning with a croupy cough...I mean a REAL croup cough, the kind that is tight sounding and raspy with wheezing in between. Horrible. I tried all day to get to the doctor, but was unable to get there. In the end I ended up in the ER with her that night, as she was really struggling to breathe. That was fun ( i am being facisous here (sp?)) I ran into all the doc's and nurses from last year when we were in with her pneumonia. The fact that they all remembered us was scary, its not like it is a small hospital, and they see so many kids. It was nice though, the recognition, as I was not treated like an idiot. They checked her lungs for pneumonia, which was clear (thank god!), and gave her a shot of decodron (steriod to help loosen her phraynx so she could breathe easier). Then sent us home telling us it would kick in in about 3 hours....5 hours later she finally stopped wheezing.
Oh, did I mention that I burnt my fingers at dinner time? Yeah, mommy had a brain freeze and did a really silly thing. I was boiling water to make pasta, and my flame kept going out. I couldn't figure out why, then I realized that there was water all over my stove top. Apparently someone dropped my pot and cracked it so when you put water in past a certian level, it leaks out. Never mind that, I move the pot over, turn off the flame, and proceed to remove the burner to dry the stove...WITHOUT POT HOLDERS! Did I mention the burner had been on? Yeah, I was not happy, immediatly thrust my hand into my freezer and well, we had leftovers for dinner. My kids heard a comotion in the kitchen, and Elle comes into the kitchen and asksm e why I have my hand in the freezer, innocence is such bliss. My boo-boos (three bug blisters were great entertainment for my kids, and a great demo for why we don't touch hot things, a "Hands on Demo" If you will. Then as we were deciding what to do about Peanut, my pediatrician called back, and told us to head in. So when I got there I had the residents look at my three fingers, the pads at the top of your fingers, well my thumb, pointer and tall man were all burnt. Good 2nd degree burns. Everyone said the same thing. ICE. Ironically when we went into the ER, everyone thought Peanut had hurt her arm, as I was holding an Ice pack on my boo-boo fingers. I ended up with 100 mg of tylenol, and a bunch of free ice packs. No charge...nice huh! At least I burnt my left hand, so I can still tyoe and write and take notes...the silver lining is ever present.
Here's hoping the rest of the term and three years go more smoothly then this first week....

CDC Report: Down Syndrome More Common

2006-01-12T16:19:00.000-05:00

I don't know how many of you have heard about this, but I found it quite interesting:

By THE ASSOCIATED PRESS
January 5, 2005 ATLANTA

(AP) -- Down syndrome in the United States is more common thanpreviously thought, at one case for every 733 live births, according to anew government report containing what are regarded as the most reliableestimates yet on the prevalence of 18 types of birth defects. Previously, Down syndrome, a type of retardation caused by a geneticmutation, was estimated to occur in a range of one in every 800 live birthsto one in every 1,000.The report, released Thursday by the Centers for Disease Control andPrevention, also found that cleft lip occurs in about one in every 1,000births, and cleft palate in about one in every 1,500.The report was celebrated by advocacy groups that help families affected bybirth defects. They noted that the new numbers are based on statewide data,while previous estimates were derived from selected clinics and hospitals.''Until now, there's been a real dearth of good, reliable, nationalstatistics on Down syndrome,'' said Suzanne Armstrong, spokeswoman for theNational Down Syndrome Society.The risk of Down syndrome increases with the age of the mother, from anestimated 1 in 2,000 among 20-year-old women to 1 in 100 for women age 40. Many women are having babies later in life, which might explain the higherrate in the new study.But because the new statistics were not collected in the same way as theold, it is not clear whether Down syndrome has really increased, Armstrongand others said.From 1974 until the mid-1990s, the government tracked birth defects througha system that relied on hospital discharge reports. But not all hospitalswere represented, and researchers said it was possible that theparticipating hospitals attracted more or fewer problematic births than thenorm. In 1997, the government collected data from all birth hospitals,clinics and referral centers in certain parts of the country.The new report presents statewide data for Arkansas, Hawaii, Iowa,Massachusetts, North Carolina, Oklahoma, Texas and Utah. It also has datafrom the metropolitan Atlanta area, the Central Valley in California and agroup southern Alabama counties. The statistics are for the years 1999 to2001.The 11 states account for about 22 percent of all live births in the UnitedStates each year and are a good representative sample, said Joann Petrini, astudy co-author and director of the March of Dimes' perinatal data center inWhite Plains, N.Y.The researchers included only 18 of the thousands of birth defects that havebeen identified by doctors and scientists. Missing are common birth defectssuch as clubfoot, hip dislocation and hypospadias, in which a boy's urinaryopening is on the underside of the penis instead of the tip. Spina bifidawas not included either, because health officials already have what theyconsider reliable estimates.

A New Planet

2006-01-08T19:21:00.000-05:00

Just when you were beging to think I have fallen off the face of the Planet....wait a minute I have! I am looking at a whole new planet complete with new cycles and roles, yet I am feeling excited and a little nervous. I will be starting my prerequisites for the Physician Assistant program tomorrow, and have been very busy trying to start reading and get a hold of some information. I don't like going into appointments or classes unprepared. Having been out of school for six years I have to retrain my brain into reading and note taking and study methodology, etc. I read a study recently that said a woman who had given birth was actually smarter postpartum. Apparently the brain becomes more elastic and can better recall and understand information. I will let you know about that one, especially since I put the ice cream in the cabinet next to the bowls yesterday. Don't worry, I found it before it got too melty and refroze it. Hopefully there wont be too many ice crystals next time I serve it.
Over the next few weeks my posting may run a bit fewer and farther between, until I can figure out my schedule, AGAIN (therapies stay the same, we added a new nutritionist and have been so busy trying to get back into the swing of things after the holidays. Now with school, I'm going a little crazy). PLease bear with me while I make the adjustments and accomodations, I promise I will be back on the ball in no time.

Best New Years Gift Ever

2005-12-31T18:58:00.000-05:00

Peanut WALKED up the steps!
No kidding, she did it FOUR times, going up SEVEN steps, holding onto the therapists fingers for support, she ALTERNATED feet up the steps. Not only four times, but then we tried her at crawling up the steps...she did that too! The little stinker had been holding out on us this whole time! We have been working on this for months and it finally pad off!
This all started when I got a call yesterday in the early morning from Peanut's Physical therapist. She had originally cancelled her appointments for the week due to the holidays, but came home early and wanted to know if she could come today. SO she came, and boy was it great that she came!

Happy new year everyone..i'm entering 2006 with high hopes and on cloud nine!

Holiday Wishes

2005-12-26T12:27:00.000-05:00

Pretty boxes, pretty bows,
All stacked in nice neat rows.
I tear open one.
I rip open two.
Uh-oh...
I don't think I was supposed to!
Each day comes bearing its own gifts.
Go ahead, untie the ribbons!

Happy Holidays and a Happy New Year to All!

Out of the Mouth of A Babe

2005-12-20T19:48:00.000-05:00

Tonight at dinner my son James suddenly stops eating and grabs his ears. He starts crying and says something of bunnies. My husband and I look at each other and say what? James looks at us and says "Bunnies in mines ears!" James' ears are hurting so instead of telling me his ears hurt, he tells me there are bunnies in his ears!

PS The ENT we see is always telling my kids he needs to check to see if there are any bunnies in their ears..of course there never are, but I think it stuck in James' mind that bunnies must come to live there when you have an ear ache.

Into the Looking Glass...

2005-12-18T19:49:00.001-05:00

Lewis Carol made this famous in his novel The Adventures of Alice in Wonderland, when Alice slips into the rabbit hole looking for the white rabbit. She discovers many friends in various forms from accordian owls to nomeraths that you must not step on. As children there comes the moment in time that you discover yourself in the mirror, what a magical time it is! You're sitting there, minding your own business, when suddenly you realize you are not alone. There is someone else sitting right in front of you doing the same thing you are. What a moment of awe and wonder as you try to touch the other person, take their toy and give them a kiss. Shockingly, they repeat all the same moves as you, yet you never touch.
Peanut made her way into her looking glass yesterday. She has made this journey before, but not to the extent she has now. It all started when I came up into my room to check my email. I placed Peanut on the floor next to me for a second, as she has discovered the keypad. About five feet away from where she is sitting is a wall of closets with mirrored doors. In one corner are some toys I keep hidden for her to "find" and play with. As I type, she butt scoots, ie hops on her bottom, accross the room to the mirrors. She looks, touches, leans forward to taste and bumps her head. Startled she pauses, looks back at me and says "Baba". I said yes, you see the baby in the mirror! She looks again, then scoots over to her toys, and begins to play with them. As she plays, she begins to share with the baby in the mirror. She claps, talks and tries to hand a toy off to the baby. It was so cute! The funniest part was today when I came back in the room to fold laundry, and put Peanut on the floor, she went right into the corner and started to talk to the baby in the mirror. She must think the baby lives in that corner now. So I feel comfortable saying that Peanut has stepped through the looking glass and has discovered a new world within her own. Amazing!

What Would You Say ?

2005-12-14T21:01:00.000-05:00

I got a call two nights ago from a friend of mine, lets call her Abigail. She was looking for the title of a book about a child with DS. I was curious, as to why she was looking for this title, as she really never showed an interest in Peanut or the DS. Abigail told me she wanted it for her friend who had had a "Down syndrome baby in Trenton, NJ". She said that the girlfriend needed some good reading. Instead of the book she had called me about I recommened another title, The new parents guide to Down syndrome, as it had more relevance and was quite abit more reputable. Abigail then asked me what she should say or do for her friend. The DS was a surprise and mom is very upset. So it got me thinking back to when I had Peanut. What would I have wanted to know about or have had said to me to make me feel better? My first thought was congratulations! You could not even begin to imagine the number of phone calls I got that sounded more like condolence calls then new baby welcoming calls. Let me tell you how depressing that was! It was such an insult to my family and to me.
The other thing I would tell a new parent would be that people are stupid. They say stupid things when they are unsure of what to say. That it is so important to treat people as if they are stupid and you need to educate them about DS and what it means. Without the education people mean well, but can really insult another persons feelings. So I guess the underlying theme would be to give the benefit of the doubt. Assume that people meant well, even if it might have come out wrong.
Ok, so now I pose a question to you: if you could go back in time to when you first found out about your childs DS, what would you have liked to have heard? What could someone have said, or did say, that would have been so helpful to you?

Personal Care Homes - The Future?

2005-12-04T12:55:00.000-05:00

Today's newspaper headlined "The Fraying Safety Net: Retarded spill into loosely monitored care". The story was about how many metally challenged, or as the article constantly referred to them as retarded, are being pushed onto family members out of group homes. It went on to speak about how the family members are being burdened by the state not helping with any costs. With all the new changes in Medical assistance many people who had been receiving help will now be forced to pay for much of their medical needs or be faced with no care at all. That in and of itself is a big issue for those of us with children or any family member with a disability. It seems that many of the people in charge of the decisions up on capital hill have never been personlly touched by a person with a disability. Unless you have lived it, you just don't understand. Now imagine adding on what I am about to tell you about.
The thing that really bothered me about this article the most was the fact that many of the personal care homes where people with varying degrees of mental disabilities are being housed with convicted sexual offenders. Yes you heard me right. Sexual offendors are being housed in the same building, and some in the same room, as those who are challenged. The article went on to mention how many of the "retarded" were fine with these arrangments (never mind the fact that they may not understand what is going on). To add insult to injury there was a case of one woman who was mentally disabled living with a convicted sexual offender, AS A COUPLE. Perhaps this needs to be looked into. It sounds a little off to me, don't you think? It bothered me because people in power, The Advocacy and Protection officer from the states Office of Mental Retardation, meant to help watch over people with disabilities, were quted to be concerned with the saftey and protection of the residents. Well, if they were concerned they should not have mixed a high risk group with such offenders! The article continued to tell of numersous abuse, neglect and deaths in various personal care homes in and around the area. The system, while set up to help, really allows many individuals to fall trough the cracks and get lost if they don't have someone with a vested interest in that persons well being.
I guess the upshot for me was how important it is for all of us to have a will to clearly spell out what we want and don't want. I certainly am concerned about personal care homes and group homes too, I hope we never have to put our child out in the world in such a vulnerable manner. I also have to agree with my husband, BStrong, who earlier in a post had mentioned us looking to buy a house with a carriage house out back. That way Peanut can have the independance she needs and yet we can keep a close eye on her too. Truthfully, I really can't plan for the future, as no matter where any child or adult with a disability goes, they are more vulnerable. I also may be worrying uneccessrily as Peanut could very well grow up and get married and surprise us by all she can do...only time will tell, but I sure wish my crystal ball would work as it would surely decrease my stress levels....In the meantime, my heart goes out to all those people who are sutck in such horrible situations.

Speed Bumps

2005-12-01T21:12:00.000-05:00

We have been moving along so quickly, traveling and growing and changing, that it seemed nothing could stop us. We were on a roll but we were headed for some speed bumps. Peanut had had a sleep study (polysomnogram) done the beginging of the month, which we never heard anything back on. I assumed that that meant everything was fine, until Monday of this week. I got a call from the Down Syndrome Center regarding a message I had left about an entirly different matter. While reviewing the finer things in life, aka Peanuts Poop, the sleep study was brought up. The NP, Nurse practitioner, wanted to know where things stood with the test. I told her we hadn't heard anything so as far as I was concerned. Apparently the pulmonology department, being as short handed as they are, had allowed her study to fall through the cracks with no follow up. She had had 107 obstructive hypopneas (when your oxygen level drop) which is not a good number. However she never retained any Carbon dixoide (called hypoxia). Her O2 levels droped a little, but only for a small percent of her sleep time. At times I think that these studies a a little too much information. That we are looking for things that we might otherwise never know about. In the mean time they sent over a SPO2 monitior (measures the pulse and oxygen levels), as well as a couple of tanks of O2. Just in case.
So while chasing that around they decide she needs to have an adenotonsillectomy (remove her adenoids and tonsils), and see cardiology because there was an irregularity in the heartbeat from the ONE EKG lead (may be a bad lead). I decided to have her x-rayed for the adenoids before seeing ENT so as to expidite the process (ie rule out surgery or rule it in depending on what they see radiologically and clinically). I also decided that if I am going in for x-rays I might as well have them look for atlanto-axial instability (instability of the c1 and c2 vertebrea that is common in 10-25% of children with DS. They have a weakness in the joint that can increase the likelihood of damage to the spinal cord.). I wanted it checked for two reasons, first we usually check arond age two and second apparently during the adenoid surgery the doctors position the head in such a way that if you have the instability it could cause a problem. Just clearing all aspects. I got the call today that she does NOT have the atlanto-axial instability (she has 3 mm and instability is marked by 4-5 mm betwen the vertebrea (we can do horseback riding!(hippo-therapy)), and that her adeniods and tonsils look normal in size. I see ENT tomorrow so will have a better idea tomorrow , but for now I can rest easy...i think. I have the Pulse/Ox monitor on Peanut , so far she is ok, although I think it is not the best lead, as her heartrate keeps dropping. I'll keep an eye on her tonight and see what happens.
We had her six month review for EI today (early intervention). She has come a long way Baby! We were able to cross off a good number of objectives and had to come up with new ones. Hooray!
So that's the news from the homefront, speed bumps in the road, but we are hoping for smooth sailing once again (knock on wood and all that jazz).

Thanksgiving Weekend 2005

2005-11-27T20:07:00.000-05:00

Busy weekend this weekend, we started with dinner on thanksgiving at my in laws. It was nice, to be with all the family like that. WE saw my sister in law and her husband and heard all about her grand daughter and their new daughter in law. Mom made a great turkey and a duck to boot, in case you were still hungry.
Then we went for the weekend to babysit my brother in laws mom, who is undergoing chemo. She doesn't like to be left alone and since my brother in law and his family went away, we offered to keep her company. So we did just that, we kept her company and made sure she took her meds on time. My kids love going to her house, and spending time with her as she really pays attention to them. It was a nice weekend, although we froze at my brother in laws house. They keep the house so cold, it was 57 degrees in there, I kid you not. So we bundled up and didn't sleep too well that night, as we were freezeing our noses off.
Today we laid low and hung out around the house while doing laundry. Very exciting, I just hav no desire to go with all the other sheep into the pasture to graze on the goods. THe malls will be packed betweeen now and Christmas, sales galore, so why go this weekend, when I can go one next next week in the middle of the day when it is quiet. I hope everyone has had a great weekend with family and friends,

Signs, Signs and More Signs

2005-11-24T13:15:00.000-05:00

We went to have Peanuts speech evaluated the other day, just to see where she is on the continuim in an objective way. We have speech coming into the house one day a week, and I think she is doing a great job, but just the same, I wanted a new perspective. Well, I got just what I asked for. The testing that they did placed her at 7 months for expressive and 10 months for receptive. She is chronologically 19 months old, so it is quite a big delay. However, I need to vent becuase the test is not fair. It does not include my childs ability to sign. Peanut signs with much accuracy, 8 words - Hi, Bye, Night night, more, all done, bathe, play, and no. Unfortunately since they are not verbal utterances, they don't count. Not only that, but she was penalized for not going in the other room to get her shoes. Well, while she is butt scooting, she is not very mobile. She doesn't walk except if she is holding your hand, she will cruise at a surface if you are there to guide her a little, basically, she is delayed in her gross motor, so she will be behind in her speech, but give me a break! I really don't like these tests, as they are all or nothing deals. There is no grey, only black and white. Very frustrating. I know Peanut is going to be delayed, and yet she is doing fabulously well for herself. I really can't complain, but I guess a part of me still hopes that she'll just suddenly up and walk on her own, or start talking up a storm.
Adding salt to the wound is a comment that I keep hearing from others about Peanut. Everyone keeps calling her "the Baby". When we see people with real babies, children much younger then Peanut, the parents tell their kids, look at the baby refering to Peanut. A family member did that the other day, I was really irritated. Their child is 11 months old, sure my daughter is 19 months, and acted like a 12-14 months old, but she is still the older child. Perhaps I would have liked it better if they would have said, say hi to your cousin. No need to add the baby or other comments.
Sorry for the ranting, I'm just in one of those moods today, perhaps spending to much time with the family is not good for me this year....

Suzy Snowflake Returns

2005-11-24T13:00:00.000-05:00

I love the winter. Ok, I love the snow when it isn't too cold out, and when I don't have to drive anywhere or shovel. Basically I like it when I can stay in. Our weather is finally changing, we are getting our first snowflakes that have begun to accumulate, we have about 2-3 inches right now and are expecting more by tomorrow. It looks more like Chritsmas then Thanksgiving this morning....at least we know the holidays are just around the corner. Perhaps the retailers will cash in on the change of weather and come up with new sales and specials. It's a good day to stay in with a hot cup of cocoa...too bad we have to go out to dinner...

Giving Thanks

2005-11-23T15:26:00.000-05:00

Thanksgiving is tomorrow, and everyone around us is so busy getting ready for the holiday. Sometimes I wonder if people remember what the holiday is really about. Or if people take the time to think about what they are thankful for. Apparently there are a few people in the world who do, as I was in the supermarket today and observed an amazing interaction. There is a girl with DS who works as a bagger, and another young man who appears to have a disability, but I am unsure what, who works bringing the shopping carts in and bagging too. Both are very sweet individuals, whom I am always glad to say hi too and interact with. Anyway, as I stood in line, the two of them were discussing Thanksgiving and what they were going to be doing. The girl, Harmony, was saying how excited she was that she was going to cook the turkey with her mom, but that she was in charge of the stuffing (she had such a grin on her face, you could tell she was proud to be given this job). The young man, Chuck, said he was going to go off his diet for a day and eat as much as he can, because the food is always so yummy. Then he asked Harmony what she was thankful for. She thought for a second, then looked at him and said her mom. She went on to explain that her mom really does alot for her and she loves her so much. He shrugged and said he was thankful he could go off his diet, then laughed and said no really he was thankful for his brothers and his dad, because they told him he could do anything. Now, is that not the most heartwarming conversation ever? For all that we do for our special kids, they DO notice and really are grateful and thankful. I really felt so proud for their families that they raised such great kids. I just wish I could tell them the conversation I had heard.
So while you are preparing your holiday meals, take a moment and think about a wonderful moment in your life, and be thankful. Stay safe, and enjoy...Happy Thanksgiving!

Weee're Baaaack

2005-11-22T11:23:00.000-05:00

We are back from our fun filled, crazy busy weekend. Despite being extremely tired, in the end I think it is safe to say that a pretty good time was had by all, and the trip was relatively uneventful. On the way there, my son James, screamed for 20 miles because he ate too much. That was fun, especially since my mother in law was in the car with us. Once he fell asleep, he was fine the rest of the way.
The wedding was nice, small, mostly family and a few friends, but very elegant. The kids had such a great time staying up past their bed time and playing with cousins.
The highlight for me was Saterday afternoon a bunch of the cousins came to play with the kids. The kids and cousins were all between the ages of 6 and 16. Peanut was sitting on the floor, and she was being included in a board game. She kept edging closer to the kids and babbling, so the kids would turn around and talk to her and have her help march the pieces around the board. It was so nice to see Peanut being so social, but also being accepted by the kids. They all thought it was so cool that she wears contacts, so much so that one of the kids kept bugging their mom to let them get lenses, because if Peanut has them so can I. It was really sweet.
Now, it is time to rest up for a few days to get ready for thanksgiving and more family togetherness....I think there should be a limit to how much time you are allowed to spend with your family, that way no one winds up irritated.

On the Road Again.....

2005-11-16T21:40:00.000-05:00

We are off on yet another road trip, with my mother in law in tow. My nephew is getting married tomorrow night and we are driving out for the wedding. It should prove to be interesting, at least I am really hoping it is boring. I must say the only thing that I am really looking forward to is getting all dressed up. I haven't had the opportunity since two years ago, when my neice got married. It should be a lot of fun. Well, off to bed, as we have an early start in the morning, Peanut has PT first thing, then it is on the road again....
THis time we bought new movies for the trip, that way the kids can't, or I should say hopefully, won't fight over the movie selection. PLus we are only bringin the new movies, three in total.
I'll let you know how things turn out, Have a great weekend!

Mid Life Crisis in your 20's?

2005-11-13T19:51:00.000-05:00

Is it possible to have a mid life crisis in your 20's? I think so. I am the mother of three beautiful kids, have an ok husband (just kidding honey, you're great too), and a job that I feel passionate about. So why do I feel like something is missing. As if I should be doing something more? Well, I have decided to answer my own question, because I need to follow through with something that I have been dreaming about doing for the longest time, ok the last three years. With each passing year the drive, the desire to go out and just do it, gets more and more intense. I think about it everyday. So what has me going nuts...I want to go back to school and get my degree to be a Physicians Assistant. Basically be a doctor without the MD and without the long schooling, but working under a Physician and their guidance and knowledge. I have been wanting to do this for so long. It would fit in so nicely with all I have learned from my Peanut, and my other two kids, as well as my current occuapation, that of lactation counsultant.
So after driving my family and friends crazy by always saying I was going to go back to school but then never doing it, I am finally doing it. I took the plunge last week and enrolled in a college to start taking my prerequisites for the graduate program that I want to enroll in. I am so excited, yet the trepidation is still present. I am leaving my three kids to go back to school full time for two years and part time for 18 months. I feel like I am abandoning them, yet I know I am not. In fact I probably am setting a good example of following through with what you dream or feel passionate about. However, I still feel a little guilty. Despite the fact that by the time I go full time Peanut is going to be in school for most of the day, I'm kinda leaving her behind. I know she will always be there, unlike my other kids who will go off and leave the nest eventually. Peanut will probably be with us or at least near us forever, which I actually am finding comfort in. So while I do feel a little guilty, I know I will only be missing out a small part to be able to give her all the things she needs or wants. Not to mention giving her a mommy who is happy and feels fulfilled.
Nevertheless, I have taken the plunge and registered for classes and am starting the ball rolling, because you have to start somewhere, right? Besides, I think when you feel as passionate about something like I do, you should seek to acheive and excel at it. I just feel like I have gone thru so much that I can give a diverse perpective to medicine. Our kids, those with special needs, are all to often seen as kids with Downs who are sick, not a child who is sick who happens to have downs. The way the medical world perceives our kids will determine what kind of medical care they will receive. Which I do not agree with and hence one reason I feel so strongly about the medical field. Then you add in the Lactation issues, and man you have gotten me started on something I can't stop. I will be brief - far too many people won't even TRY to breastfeed their infants. All I ask is just try it once, if you hate it then fine, stop. But you can't say you don't like blue food when you've never even tried it. Plus, once more, the medical field is far too outdated and misinformed about breastfeeding and so many mothers just give up. Just like mothers of kids with special needs may give into the pressures form the medical staff - they are intimidated. Intitials don't give an individual infinite wisdom, they just add a little more weight, but mom will know, 9 times out of 10, what is best for her child. If I can try and help parents and women be heard by the medical profession, then I have done my job. Besides, I think the whole medicine thing is cool, and really neat, you should see the things they can do nowadays. Absolutley amazing.
I am actually counting the months down until I can actually apply for the graduate program, I am more nervous about applying then actually going. I am older then the average student, and have been out of school for 6 years, I hope I can get in...I'll keep you posted.

Life's Little Moments

2005-11-13T19:23:00.000-05:00

Tonight was a big football game. I was very nice, and after my husband was offered tickets from a friend, to let him go. I took some time out this afternoon to get some errands done. It was only fair, besides my husband rarely goes out to sporting events anymore. It was a nice treat for him.
Anyway, after he left I was putting the kids to bed and my Ellie says to me, "mommy, I remember when I was four, I loved James' eyes when he was a baby, they were too cute and so fat!" I must say james was a fat baby, at seven months he weighed 23 pounds. You would never know it now, he is a slim trim 3 year old. It was all breastmilk fat, that melts away the minute the kids start to move. It was just funny the way she said it and out of the blue. WHy is it that kids tend to put an age to when they remember things, and yet it is always the last year. If they are 5 it was when they were 4 if they are 4 it was when they were 3.
Then, when they finally fell asleep, which was in ten minutes, the fastest I've ever seen them go, it was a perfect picture moment. Both kids were in our bed, Ellie curled up next to James and James laying semi-upright with his arms up, hands behind his head, proping his head up like he was watching tv. Both sound asleep. So cute and magical. Very cute moments that one can enjoy and smile.

Easy Elegance

2005-11-09T13:05:00.000-05:00

I have gotten a few private messages from some of you asking about those soup recipes that I have been making for Peanut. So in an effort to accomodate those who want them from those who don't I started another blog. It is called Easy Elegance. There is a link to it from my links section on the side bar. In it you will find a couple recipes and I will add as I have the time. Let me know what you think....

Words To Live By...

2005-11-06T20:31:00.001-05:00

Everyone has a saying or motto by which they live. Some mottos are more philosophical then others. Whatever the motto or words may be, they define us and let people know a little more about who we are. Having said that, my mottos are the perfect example of who I am and what I believe in. I have two that I am constantly saying:

Don't judge a book by its cover and You never know aka benefit of the doubt

The don't judge a book by its cover is the newest motto for me. After we had Peanut I came to strongly believe that people are too busy judging based on what they see. They don't seem to try to see what lies beneath the surface. It bothers me and so I try very hard to look beyond what I see. You'd be very surprised what you'll see if you can get past the apperance and see someone for who they really are.

The benefit of the doubt is my all time favorite sayings. It kinda runs along the lines of you never know until you've lived a day in anothers shoes. You just don't know why people do things, or say things. Perhaps they had a bad day or misunderstood you or they just are being misunderstood. All too often peoples words or actions are taken out of context and read into in a way that can ruin friendships, and change relationships. If you start to get insulted or mad, just give the person the benefit of the doubt, you'll be amazed.

So what words or mottos do you live by? Words that make a differance in your life daily, weekly? Why are they so important to you?

Mind Over Matter

2005-11-03T20:41:00.000-05:00

This last week has been a whirlwind of activity. We have been so busy with the kids, doctors appointments, life, you know how it is. This week was extra fun due to the time change. My friends all know that they can call me as early as 6 am, as my kids tend to think that around 5:30/6:00 the world wakes up and they might miss something. Actually Peanut has gotten into the habit of pooping out of her diaper at 5:30 am every morning. A problem I am much happier having, although if it was 6:30 instead of 5 it might be a little better. Although truthfully then I'd probably be really late all day. With the time change my kids got up at 4:30 two days in a row, that's AM people, not PM. As in like no one is up, the moon is still there....kids just don't get it!
I know I'm not the only one in the same position, but it sure seems like I am a zombie all week.
Peanut went for a full polysomnogram (sleep study) on tuesday and boy did I learn a few things. Like they only record the sleep activities from 10 pm until 4:30 am, then they wake you up, take all the wires off and send you home at 5 am. What the heck people?! It's a sleep study, can you let me get some sleep? Ok, it was PEanuts study, but it was my chance to sleep...at least that's what I thought, boy was I wrong. We'll get the results back in a couple of weeks, here's hoping it was a big waste of time. I like those kind of tests, the ones that turn out to be a waste of your time.
PEanut had her 18 month checkup. I can't believe she's 1 and a half already. She looks great, grew almost two inches, gained a pound and is still small in the cranium department, but growing slightly.
Yesterday was crazy because I was so tired from the sleep study, then to add insult to injury my insurance company, who had told me my lenses were covered 100%, is now telling me they are not covered. Don't worry I'll show them who's boss......
Today was even more crazy, it went as follows:
5:30 am- poop out from Peanut, clean up ,bathe and get dressed.
6 am James gets up with 103 degree temp, and miserable, administer Tylenol and cool clothe
8:00 PT shows up to work with Peanut.
8:15 leave to take Ellie to school
8:30 get thru to MD, appointment is in thirty minutes ( its a 20 min drive) get home, get James shoes on, change diaper, find coat put it on leave
8:45 get in the car and realize need gasoline, so stop for filling up
9:05 get to MD, MD not there yet, start by telling the nurses what tests I want to have run ( urine test for UTI, Strep test)
9:15 get call from school Ellies ear hurts, so I call my mom to pick her up, good timing!
9:30 MD shows up a little late
10:00 leave MD office, throat lokks like strep, but test was negative. Got medicine just in case
10:15 drop James off at home with nanny, nurse PEanut and leave to library at Hospital to pick up some books
10:45 get to hospital, and drive around looking for parking
11:45 leave for home/Shopping for food/pick up medicine and cancel appointment for patient as I will never make it in time, and won't have child care.
The day continues with therapy and sick kids crying, soup making and eventually bed time. Never a dull moment in my life or anyone elses, especially those who have kids. PErhaps if I think about it hard enough then tomorrow will be better?

Peanut's Newest Tricks

2005-10-30T06:21:00.000-05:00

Looking back over my last few posts, I realized I haven't told you about all the new tricks Peanut has. She has been very busy this last month, learning and surprising all of us. Not to mention she had her half birthday this week, and is now 18 months old. I can hardly beleive it! Where has the time gone, we just had har first birthday last month, wasn't it? Before I know it she'll be in school and running around driving me crazy...wait a minute, she kinda does that already....Anyway back to her new tricks where to start? Well, lets start at the top and work our way down.
In the cognitive/developmental department, she is getting it! Yesterday we had vision in to work with her, and the vision therapist calls me in the room and says watch this. We have a book with a picture of a xylaphone in it. We also have a xylaphone that Peanut loves to beat on, it looks different from the one in the book, but you can tell they are the same thing. Well, apparently Peanut could tell they were the same thing too. The therapist asked Peanut whats this? Peanut lookos at he book and turns to her toy and beats on her toy. Then the therapist asks her where her toy is in the book. She stops playing with the toy and points at the picture in the book. After turning the book upside down, backwards, and repeating it. Peanut picked her xylaphone and matched them each time. Way cool brain synapses going on here people! We also were able to cross off her IEP the finding covered pobjects and object permanance, she so gets it, in fact the developmentalist and I were joking that she is bored with the can you find it games.
In the Speech department, in the last three weeks Peanut has discovered her voice. She sits and chats up a storm, baba, dada, lala, mama, varying the tones, intonations, and orders of the consanent vowels. While she is doing great and has /m, b, d, l, g, n, p/ consanents, she basically only has /a, o/ as vowels. WE've got work, but we are so excited to hear her! She will scream from the other room to get your attention, or even from right next to you if yoiu are paying enough attention to her. Very cool!
We have also been very social this last month and it seems to have worn off on PEanut. She is very interested in babies and wants to interact with them. She tries to touch them, and talk to them. She shared her toy a couple of weeks ago...I am not exagggerating. She was playing with a toy and a little boy a few months younger then her was trying to get it from her. She stops, looks at him, hands him the toy, reaches across midline and gets another toy for herself, and goes back to banging her blocks together. I could not beleive it, until she did it again this weekend with another child. Similar circumstances, but she shared!
In the gross motor/PT department she is cruising along the surface of a couch, if you give her incentive. She will walk holding onto your hands, and has been working hard at walking holding onto only one hand. Peanut is on the move on her butt, butt scooting, and hopping along on her little bum. You can leave her in one spot, only to find her stuck behind the door clear across the room in ten minutes, sometimes less.
In the OT/food department, she is FINALLY getting the hang of drinking from a cup. We have been encouraging using a nosy cup (the cups with the cut outs so you don't have to tilt your head back to get the liquid, instead the cup and fit past your nose). It seems to be working as she is taking 1-2 oz a day by cup. Otherwise we have discovered that she really likes to eat soups. It seems to help to have a textured item in with the liquid, it cues her to swallow the liquid. So I have been busy increasing my repertior of soups. So far we have made Yellow Split pea, Cream of Sweet potato, Carrot and spinach soup, chicken soup, mushroom barley soup, and of course beef and noodle. Of all of the soups Peanut likes the Yellow split pea one the best. I think it is pretty good too. I'll try to post the recipe later, for those of oyu who might like to try it. Pooping is going much better, she goes 2-5 times a day, and is not crying at all! Yippy!
This week we are going to the hospital for our overnight stay to do another sleep study. The first one they did was not a real one, it was only a partial sleep study, this one is the real deal, full blown sleep study. So we will be having a sleepless night at the hospital. As long as everything is fine and we don't come home with any germs, we'll be ok.
This has turned into the total brag post, but she has changed and grown so much and I have been too busy going on about myself anf my son, that Peanut got left in the dust. As I am typing this, Peanut is trying to get at my sons hot chocolate, which he took a drink from and put down on the floor. Little does he realize that Peanut hops and scoots across the floor to get at things...speaking of which she has completed her journey across three feet and is trying to figure out how to drink the cocoa. Oops, James came back to rescue his drink, she's crying now. Guess I should try to give her some in her nosy cup.... have a happy day guys!

Spa de la Discrecion

2005-10-27T22:32:00.000-04:00

I recently went to a five star spa, as a gift from my husband. I had gotten the gift certificate from him for my birthday back in August, but had not found the time until recently to get there. It was a nice unassuming location, nothing fancy, but great service, and certianly with a smile. Well, after the most relaxing massage, I spend a good half hour in the post massage relaxation chair, they had some funny name for it like, the post bliss de-clouding chair, or some strange thing. As I leave, they ask if I would like to come back, of course I say yes. Not to mention I still have money left on my gift certificate. They then proceed to invite me to bring someone with me the next time. They have couples massage specials that I might like to share. I said no my husband is not coming the next time. Of course I said no, I would rather keep this to myself (yes I am that selfish, how often do I get to do something just for me?). So instead they offer to me the opportunity to bring my boyfriend the next time, promising to be discrete. I assumed that they had not heard me when I had said I was not interested in bringing my HUSBAND. So I repeated, yet they assured me that they had meant my spouse, boyfriend or significant other, whomever that may be. Apparently I am living in a dream world, in bliss thinking that there are people who still beleive in monogomous relationships. Desperate Houswives is not so off the beaten path, with this one sleeping with that one and then the next one lines up...what the heck people!?
I come home and relay the story to my Nanny who tells me sure everyone has affairs all the time, and proceeds to tell me about this friend and that friend and their extra cirricular activities. Anyway she tells me I could never have an affair or extra marital affair because I have a big mouth and I'd screw it up, her words not mine. But she's probably right, I do have a big yap, although I have been doing much better about keeping it shut (that might be because I can't remember anything anymore).
Later that day it occurs to me that maybe I should send my husband and my boyfriend for a special couples massage together. I wonder what the concierge at the spa would say to that? Of course I'd have to get a boyfriend first, of course my nanny is right, I probably wouldn't do that very well. Honey, if you are reading this, I love you and you know I'd never cheat, unless it was with my boyfriend ;)

Dinner Delight or Disaster?

2005-10-26T19:46:00.000-04:00

We had the family over for dinner the other night. It was nice, my parents and siblings all came, and so did Uncle John. My kids had so much fun playing with all the aunts and uncles, then my eldest had her first sleep over at my moms house. I was pleasantly surprised that she lasted the whole night. I thought for sure around midnight or one in the morning I'd be getting that call that she'd want to come home. She proved me wrong! Anyway, I digress, the dinner was interesting in that I just could not seem to get things right. Don't get me wrong for as interesting as dinner ie the food turned out, it was edible and good, just not the top of my game. We started off with soup, which was good, then moved on to salad and the main dish. That's when trouble struck. Apparently in one of my more brilliant moments I put one of those disposable casserole dishes in the oven on too high of a heat. Let me tell you, that stuff melt and gets all over everything! So my house is filling up with smoke, but no one is minding. Thank god they all know that I really can cook!
Next up is the dish that I keep forgeting to serve. I found this great recipe for carrot and snap pea bundles, where you thinly slice and julienne carrots and snap peas, saute them with a little oil and sugar, and then bundle them and tie them with partially steamed chives. The tricky part is getting the chives steamed just right. If you over steam them, they break, if you under steam them they won't bend and they snap. They look great, took way too long to make and I froze them, so I keep forgetting to serve them. Oh well, maybe this weekend I'll pull them out of the freezer and try again.
Like I said it wasn't too bad, everyone ate, enjoyed and laughed at all my crazyness. Like I said it was nice to have everyone over and spend the evening chatting about life, the world and stuff. Still can't figure out what the deal is with me, maybe too much is going through my head....I've been thinking too much lately......perhaps I should be thinking less and doing more?

Home Economics 101

2005-10-23T20:46:00.000-04:00

I told you I have been in one of those weird homey moods, entertaining left and right, baking and cooking up a storm, and just getting things done around the house. Well today I took it to a whole new level. My kids needed new comforters, theirs were quilts and not suitable for the cold that we are expecting this winter, not to mention the new lower thermostat level. SO I went shopping and together with my mother-in-law and three kids, we picked up new comforters. I got them the most affordable, but machine washable, down comforter we could find. Then we went looking for duvet covers (comforter covers). Well, those turned out to be fourty to seventy dollars each. I just can't see paying so much for covers. That is just highway robbery, in my book. So instead I thanked G-d that my mom had taught me to sew and had bought me a sewing machine when I was little. You see I got my first machine when I was ten, and made myself my own outfits, and all kinds of stuff. Over the years, I have made everything from clothes to costumes to curtains to baby bedding (comforter/bumper/dust ruffle). Well, now I can add comforter covers. Yes for $15-20 you too can make your own covers. I bought two twin size flat sheets, 300 count cotton, and sewed them right sides together. Then I added a big stripe of velcro to one end, the one I left open so I could put the comforter in. My daughters cover is one side plum the otherside is pale pink; while my son got tan/burgandy. They turned out really nice and cost well under fourty dollars, took only an hour to make!
I think the next thing I'll tackle is thermal curtains, how bad could that be? I'll let you know.....MAYBE.

Of Igloos & Dog Sleds

2005-10-22T19:49:00.000-04:00

With gas and pertrolium prices soaring my husband and I have been re-thinking the trips to the store for the lone gallon of milk, and adding a sweater or two in order to turn down the thermostat. Tight times call for tough measures, so I have been thinking about ways to cut costs. As I sit here typing this in my sweats with two layers underneath (it's really not that cold, I am just always cold in the winter) I have found the perfect solution. All we need to do is take a couple of lessons from our friends in Alaska, the Eskimos. You read it right, the Eskimos. They live in igloos and drive around in dog sleds.
Think of the savings now! Go down to the pound and pick up a dozen dogs, bring 'em home, then build yourself a sled (or buy one from Target for $9.99). The cost of dog food and vet bills would certainly pale in the face of petrolium. Besides, you will have performed the best humanitarian act this year by saving those dogs from the gas chamber. When you get home, you could go in the backyard, build yourself a nice igloo, and your heating bills would be quite low. Not to mention your spouse would be so happy you finally cut down that darn tree and all the overgrowth in the yard. You could even add on a room or two, at virtually no cost, except that of labor! You could finally own that seven bedroom mansion, with a small heating bill to match. Think of the resale value in that! While in the construction phase, remember to watch out for that yellow snow!
So as you prepare to batten down the hatches, cut back on outings and shopping trips. As you purchase twelve pairs of thermal underwear and sixteen pairs of sweat suits for each member of the family keep these suggestions in mind. It might save you a few bucks somewhere along the line.
Now that I have solved the problem of heating and transportation for the winter, what about the summer months you ask? Well, adobe is cool and cheap enough, as for gett'n around town, well roller skates are pretty cheap.....although my sister has a fondness for those little motorized scooters that you plug in to charge. Apparently they come with two speeds, Turtle or Rabbit. I kid you not. You can put the scooter into turtle and go slowly or you can crank it up and zip around town in style on a super charged scooter in Rabbit sped. Sure would beat the $2.69 per gallon for those trips to the store for milk.

Poop, It's Grand!

2005-10-21T17:42:00.000-04:00

Well, we have finally got things under control in the pooping department. Peanut has been going with great regularity. Many times waking up at 5 am only to need to be bathed. I am not complaining, just a little tired, which I would take any day over the screaming bloody murder for one poop every sixth day. Horrible days I have to say I don't miss at all.
Been busy with the kids and got biten by the baking and entertaining bug, so I haven't had much time to blog with good regularity. I will be back hopefully this weekend, filling everone in on my escapades...until then poop, poop, cheerio (get it, that's what;'s been going on at my house alot, pooping, and easting cheerios, though not simultaniously!)

Uncle John Strikes Again

2005-10-10T20:34:00.000-04:00

Proof positive that Uncle John has a very special place in my sons heart, in two acts.
Act One:
When James woke up Sunday morning he was excited. He came into our room, eyes shining bright, smile big as can be and announces, "Mine Birthday!" Brian and I say yes it is your birthday. The following is a dialog between Brian and James:
Brian: yes it is your birthday
James: Me birthday, James
Brian: Do you know what we are going to do today?
There is a pause as James thinks and then answers: Cut mines hairs
Brian: that's right, you're going to get you're hair cut today. Do you know who is going to cut it?
James pauses, tilts his head so that his hair is falling away from his face, thinks, and then answers: Unca John cuts mines hairs! (with the biggest grin of all on his face)
Brian looks at me and asks me if I had coached him to say that, of course I had NOT, James just was really excited that Unca John was coming to cut his hair.

Act Two:
We are at the Salon and James has just gotten up into the barber chair. He sits down and the stylist asks him about his funky hair do. You see we went from our house where the butchery had occurred (ie everyone taking peices of hair and loping them off with scissors and no particular style). The stylist, Nichole asks him who cut his hair. Instead of saying everyone, he looks at her and without a pause smiles and says : "Unca John cuts mines hairs!" What a cutie Pie kiddo...

I guess that the honor of the haircut and the first FIVE word sentence go to "Unca John"....If he should ever decide to switch careers he might try hair stylist, at least according to my three year old.

I wonder if I take James to Uncle John for his 6 week trim how much he'd charge me for it......hmmm?

101 Friends For 3

2005-10-10T20:04:00.000-04:00

If you've ever seen 101 Dalmations there is a scene where Pongo (the dad) is attempting to count the puppies, but loses count and yet still ends up with 101 (even though by his count there are 156). Anyway, at my sons 3rd birthday party, the Big Haircut Ceremony party, there were approximately 101, maybe add 20 or 25, of our family and friends (kids included) in attendance. It was so nice to see everyone and spend the afternoon with them, enjoying our kids, catching up and relaxing.
The buffet included such items as Roasted Garlic and Potato Gallettes, Apple Cinnamon Muffins, A noodle dish called kugel, Oriental Spinach salad, Chocolate Trifle (which was really really yummy), assorted cookie trays, homemade dinner rolls, bagels, cream cheese, egg salad, and fruit salad. Of course there was the cake too. The cake I HAD to make, which not without a few close calls, turned out really good. I have to say I surprised even myself! People ate, and enjoyed (I think?!).
James was such a trooper, coming to get his hair cut whenever someone new arrived to the party. He was so good. He never shed a tear or cried, just smiled and asked for more Smarties. All in all a good time was had by all, and everyone is glad it is overwith. Especially mommy, since the night before was a restless night. I was a bit upset and anxious about cutting my baby boys hair. You see he had locks that resembeled Fabio's trade mark hair, long flowing blonde locks that catch your attention. Now those locks are gone. History. He now looks as cute as can be, my little baby boy replaced by this heartbreaking little man. Look out girls, James is on the prowel!

Gallons of Ice Cream

2005-10-06T21:43:00.000-04:00

I have a few minutes in between activities as I get ready for my sons big party. So I thought I'd share a peice of very important information with you. Baskin Robbins does sell gallons of ice cream, in a different sort of way. Instead of hand packing it like they do for a quart or a half gallon, they get creative. They take the great big container that they dip out of and CUT it into a smaller container. After all a gallon is just a weight, right?! Then they top it off with a cap, write the flavor on the top and hand it over....after you pay a small ransome for it.
So, you are asking yourself, why do I know this? I know this thanks to a very special man, my husband. He owed me ice cream because of a certain cartoon he posted (and from a ball game a few weeks ago). Monday afternoon, actually monday night as I didn;t get home until 5 pm, He surprises me with thegallon of Mint chocolate chip ice cream. Yummy!
Not good for my diet, but great for stress relief! Anyway so now you know, and now you can rest a little easier tonight knowing that next time you want a gallon of Baskin-Robbins Ice cream, you CAN get it....it just is a little interesting looking.

The Big Number Three

2005-10-02T21:16:00.000-04:00

When my son turns three it is time to celebrate. We will be celebrating the fac that he has grown and turned from a baby into a boy. That he has developed into this amazing little man who is curious and interesting in bugs and trains and cars and how things work. Who am I kidding! I am celebrating the fact the Mommy has survived the first three years with minial changes to her hair (ie not gray yet!). All the stress and the headaches all not for nothing. I have become a wise woman. I know that I need to celebrate in a big way!
We have invited 125 of our closest friends and family (mostly family) to join us for a party in honor of my sons third birthday. It will be at this party that we will cut his hair for the first time ever. Yes, in three years he has not even had a trim, well other then Peanut yanking out a handfull of hair last month. Everyone in attendance will be able to take a small snip, and then following the party we will go to the barber and get a nice cut and style. It is a family custom that has been done for generations...something new and different, hey any excuse to party!
So in preperation for the party I have been baking. I made black and white cookies, snickerdoodles, swedish nut balls, palmiers, apple muffins, dinner rolls, and am not done yet. Last count on the cookies was 18 dozen cookies and 4 dozen dinner rolls and 5 dozen muffins. Not quite enough food for that many people, and so the menu goes on to include potato galettes, spinach salad, fruit platters, egg and tuna salads, and a quiche or two. Not to mention the birthday cake. I decided I didn't want to spent $100 on a cake when I can make one for ten dollars or less. So I am going to try to make my own...I'll let you know how it looks. Truthfully even if it doesn't look all that good, at least I know it will taste good.
So for the next few days it is the kitchen for me..up to my elbows in a 25# bag of flour and sugar flying all over...don't worry I'll clean house before the guests arrive, I have about a week or less.....

All Clear

2005-10-01T20:13:00.000-04:00

On Friday we went to the hospital (see it seems I'm there to often) to test for Hirschsprungs. They did a barium enema. Poor child, Peanut screamed bloody murder the entire procedure; of course I don't blame her, it didn't look very pleasant. The good news is that it doesn't appear to be Hirschrpungs at all. Instead it is most likely a fluid issue, although we will be consulting with GI once more before the difinitive diagnosis. Whew! What a relief! I was so worried they'd come back with a surgical consult....you have no idea how glad I am that it wasn't necessary. Anyway, with that off my shoulders I can relax this week and just enjoy lifes little gifts. Like my son deciding to remove his diaper the minute he poops because he is uncomfortable, yet won't do his business in the potty. What exciting times it is in the life of a three year old.

Lifes Little Guilty Pleasures

2005-09-29T07:43:00.000-04:00

THere are a few things in life that are hard to admit to enjoying. Like some of the new night- soaps that are on the tube nowadays. Yes, I admit it, I love to watch Grey's Anatomy, with Patrick Dempsey and crew. I guess I enjoy watching Hollywoods take on the hospital scene (or maybe I just like watching Patrick Dempsey? I'll never tell). After all it seems as if I am in that kind of setting (the hospital) to often. The escapism of imagining what the heck is going on behind the scenes is a coping mechanism for whatever I'm there for. Like with Peanuts upcoming barium enema. When the physicians are walking down the hall, you wonder what their story is. What is their life like? Do they have a family? A wife? Kids of their own? Are they partaking in hospital gossip, enjoying hearing what is going on all around them, perhaps about themselves? Whatever made them decide to become a doctor in the first place? Why pick that particular field of medicine?
My mom is a nurse, although no longer practicing she keeps her licensure updated, just in case. Anyway, she used to tell me stories from the hospital where she worked and even from nursing school. This one was sleeping with that one and cheating on the next. Doctors were in bed with doctors and nurses alike. This one changing her life to be better while that one only bacame a nurse to marry a doctor. Crazy! It is one big happy family in these facilities...with all kinds of secrets in the halls.
Perhaps on the days that I feel my life is a little monotonous I should go down to the local hospital and hang out at the nurses station and see what is going on (truthfully, I could just ask Uncle John). Could be better then t.v., however somehow I don't think all the doc's out there are as dreamy as Patrick Dempsey (hey, don't laugh, my daughters OT thinks he's hotter then hot too! It's a girl thing).
Maybe I should reconsider the whole med school thing? I'm not THAT old, yet. Might be fun.....Sorry honey, but I think that medicine is calling me......Funny thing is I can't get away from it, it just keeps coming at me.....

How to get your parents to spend $1500

2005-09-28T12:30:00.000-04:00

How do you get your parents to spend $1500? You go to Israel and break your foot. My lil sister fell when she got to her school in Israel. She was treated at the ER and sent back to school. Fast forward two painful weeks of phone calls and misery and you will find my sister at home with a Hot Pink cast on her left leg. SHe has a hair line fracture in her foot that was missed because the ER had not taken a comparative xray of her uninjured foot. BUt I digress. The reason she cost my parents so much was to fly last minute across the ocean was $1500 or thereabouts. WHile I don't recond this course of action, I personally feel it was money well spent as she is much happier and back to her old self. Mom, Dad if you are reading this, you can come to eat pasta with us any night of the week (well, except tonight, and maybe not sunday......or tuesday...you better call first). LOL just joking, you're invited anytime. Luv Ya! Welcome home Lil sis, we're glad you're back even though you cost an arm and a leg......no pun intended!

Thumbs Up!

2005-09-26T10:57:00.000-04:00

Due to Peanuts vision issues, every six months we take her to the School For Blind Children to have a Functional Vision Comprehensive Evaluation done. They look at all areas of developement with vision as the main factor to see how she is doing. We saw them last in April right before she underwent surgery for her strabismus and nystagmus ( wandering and shaking). At that time Amanda was doing really well, but had apparently developed amblyopia (turning off one eye and only using the other). We had a lot of concerns regarding schooling and teaching her to move in her environment because of the low vision. Since then she has made great strides.
In June we had the surgery and we went last week for her evaluation and they could hardly beleive it was the same little girl! She was so quick to find the lights and turn towards them equally on both sides! She was exploring her environment and playing around. She was finding objects that were the same color on color with ease. ALl things she had had difficulty with before. They were so pleased in fact that when the subject of schooling had come up, we were told not to worry about putting her on the waiting list for the School for Blind Children, that she'd presumably do very well in a typical setting (ie not specifically geared for kids with vision impairments, that the concern should be the DS not the vision). What an awesome feeling!
I know we have a great team who work very hard with her and I am so pleased at all the progress PEanut has made, on her own and with the amazing help of the therapists! I can't wait to see what else she has in store for us...the unending surprises of accomplishements and goals met...I just wish she'd start pooping!

Baffeling Case

2005-09-26T10:48:00.000-04:00

We are stumped! No one really knows why Peanut is so constipated. We went to see the Gastroenterologist two weeks ago and they initially suspected Celiacs. We did some blood work and it came back negative. Which is great news. I can't imagine being allergic to wheat, spelt, rye, barley and oats. As it is I am allergic to eggs, and that's tough! But I digress. The Mds gave us some lovely smelling laxatives for Peanut and we have had her on them, but they have not made any differance to date. We have increased her fluids a little. She eats watermelon up the wazoo, and she started eating Cheerios with milk. So I give her a big spoonful of milk, with one Cheerio. She hasn't cuaght onto me yet, and eats beautifully, finishing a quarter cup of milk easliy. I know it is not alot, but it is a great improvement from before. Anyway, so now I have pushed the docs alittle to get them to check her for Hirschsrpungs, by doing a barium enema. I wanted the biopsy because From what I have read it is a more definitive diagnosis, but the mds will only do the enema first. Fine, at least we'll get the ball moving. Now I need to get my daughter an appointment. That's the hardest part. I just feel so bad for her sometimes, how she has to work so hard. But lately she has been awake at night, alot. I think her tummy is bothering her, but she is having trouble going. Tonight is suppository night if she can't get things going on her own...fun fun fun (NOT!).
She has increased her food repetior! She eats lettuce with sweet and sour dressing on it, she will eat steamed and or sauted zucchini, she loves it! Hopefully things will get moving. I am just at my wits end with worry and dismay!

To Grandmothers house we go....

2005-09-22T22:36:00.000-04:00

We went to Upstate New York near SUNY the begining of this week to visit family. It was fun. The kids watched movies on the way there making it much easier for mommy to stomach the eight hour trip. The only one who was unhappy was Peanut, and boy did she let us know. It is hard because now that she has figured out how to move she wants to move and not be stuck in one spot (I don't blame her).
While we were in the fashion plate of the north, I did take my chance and do a little shopping. We went into this humongous mall that was five levels of shops, there is no way you can see it all in one visit. Trust me we saw a quarter of two floors and that took a few hours. There was also an indoor carosel, that was full size with all the horses going up and down. The kids enjoyed going on it and seeing the Legos in the Legoland store. I hit the biggest H & M I have ever seen...cool clothes, awesome prices! We wardrobed the family for a small kings ransome. Oh, well!
I found a dress for my nephews wedding at a bargin price, and can't wait to wear it ( princess feeling, ladies!)
The highlight of the trip for me, aside from all the shopping was going to where my mom had grown up and showing my kids around town. It was fun because I spent so much time there as a kid and I have found myself wishing I could take my kids to see the fun things. There was an old dairy farm, called Dunmires, where I used to go and get fresh milk, in the glass jars. I would get fresh churned sweet butter and the most delisiouc ice cream you have ever tasted! They were closed, as they had shut down operations a few years ago, but the property was still there. Then there was the old elementary school building, which is now the borough building and library. The old high school had been torn down about seven years ago, which was the last time I had been through. Now there was a new public housing complex. But, my grandmothers (my moms) old house was still there, although the new owners decided to paint the pale blue shutters a very ugly shade of burgandy/puke brown.
The house that my great grandmother had grown up in was also still standing and in great shape. The old post office building made of feild stone that used to be my great grandfathers general store was also still standing and in mint condition. The bank had ahd a makeover, but it was still the only bank in town. However the market (Klein's) a small grocery store, had been renovated and had fresh new beige siding put up over the old brick. It was a shame they covered it because it was a historical building. I remember waiting until I was old enough to run to the store myself. I would run out the back of my grandmothers house, down the path in her graden to the alley, and run next to train tracks to the store thirty feet away. I'd go in and pick either an ice cream or a candy bar and a cold coke, pay and run back to sit in the yard on a swing to drink my coke and eat my treat. When my cousins came to town too, we'd race down the front way over the old brick sidewalks, runnning to beat them to the store, many a times falling and shredding my knees on the bricks. Memories, sweet memories.
My kids didn't get the chance to make any purchases at Klein's market, but they did play in the play ground and saw the old cemetary that dates back to the civil war.

The Misadvantures of My Lil' Sis'

2005-09-16T12:35:00.000-04:00

My kid sister decided to go learn abroad for a year after having graduated from high school last spring. So off she went to Israel for her first year of school. My parents accompanied her to the school and helped to get her settled. Everything was going great. My parents got her settled and went about their business, touring the state of Israel. The day they were leaving to return home trouble struck. My sister was going into the lunchroom to eat dinner when she took a spill down the steps. She ended up in the emergency room, with crutches, and a badly injured ankle. SO here she is away from home for the first time, in a new country, with a different language and alone. Poor kid! Not only is she a little home sick, but now she is injured too. I can only imagine how she must feel. Then to add salt to the wound, the school where she is attending is not being very accomodating at all. In fact they made an appointment behaind her back for her to go see and orthopeadic surgeon. Nice right! Well, the reason they did that was because they didn't want her oin crutches anymore. So she calls home at 1 am to wake my parents up to see what to do. My parents use their connections (I'm still trying to figure out who they know...) to get her an appointment with the ortho who works on the Israeli national basketball team (the team that goes to the olympics). He looks at her foot and tells her she has two small bones out of place that need to be given 8 weeks to rest, and hopfully they will return to their proper position. If not then she will need to have surgery.
Like I said, she is 6,000 miles from home in a new country with a new language to learn....my poor lil sis! Needless to say after a week of dealing with the school the doctors and her parents, my sister has decided to come back home until her foot heals. At that time she will decide what to do next. So we will be welcoming her back home after being gone for 5 weeks....now with new accutriments (crutches). Maybe I should take her shopping, although I don't think she'd fit into my double stroller, I think it has a weight limit of like 50 lbs....Oh well, the misadventures of my little sister keep me preoccupied from my own families issues...up side to everything is the grass is not always greener on the other side of the fence.

Gastroenterolo-what?!

2005-09-14T18:00:00.000-04:00

Ok, so I know my latin as well as the next person, but I never thought I would have any need to visit a gastroenterologist, let alone have to take one of my kids. Gastroenterologists are medical doctors who specialize in the diagnosis and treatment of diseases of the digestive system, such as hepatitis, ulcerative colitis, Crohn's disease, and colon or rectal cancer. They also deal with diagnosing intestinal issues such as Hirschsprungs and Celiac Diseases. Tomorrow we will be having our first, and hopefully last, visit with the friendly gastroenterologist for Peanut. Since she began eating solids she has had constipation and related issues on again off again. This past weekend it reached a whole new level, resulting now with our pending visit. I am hoping that I am right in my motherly instincts thinking that she is just not getting enough fluids. Since she is breastfed, she really has no desire to take liquids (even my pumped milk) from a bottle, sippy, straw, or nosy cup. We have tried everything from thinckened liquids to jello, nothing seems to piq her interest enough to want to drink it. Therefore, I beleive that she is not getting enough fluids, so while she is not dehydrated, she may not be fully hydrated. I am also praying that the doctors are incorrect in their feeling that she may have Hirschprungs Disease. It is a disorder in which the cells inside the lower intestine that help move food along are either dead or nonexistant. Apparently this is more common in kids with DS, and must be dealt with surgically from what I understand. Chalk another one up for Peanut and her Mommy. I am starting to wonder if I should go back to school...after all I am developing a wide repitiour of all the different specialties (hoping I won't be learning about any others!). The things we learn about.....here's hoping for the best.....and praying for a less stressful week next week, as I am having a hard time this week. The appointment is tomorrow afternoon...YIKES!

Number Four????

2005-09-13T15:03:00.000-04:00

So we went out to dinner the other night. A cousin of mine had tied the knot and family members and friends had gotten together for a post marriage dinner party. So my husband and I went. We had a great time, it was nice to see people we haven't seen for a while. One of the people I saw there was a woman whose kids I used to babysit for, Sylvia. Sylvia has ten kids and the first six I would watch many times over the years. She recently had her tenth child, a cute as a button little boy. While at the dinner, we got to talking about life and how funny it is that we have kids the same age. Just then her little boy proceeded to spit up all over his mother and her beautiful, but dry clean only, suit. So I offered to hold him while she went to clean up a little in the ladies room. Holding him, I got to feeling like maybe I want another one of these kiddos. They are so little and yummy, but could I handle a fourth? Especially with Peanut and all her needs not to mention my middle one, James and his speech needs (which he will and is outgrowing).
But I think I may be getting to that point that maybe one more kiddo would make me feel like we are a completed family. After all my kids are roughly two years apart and that is great spacing, yet I am a little unsure. What if I can't handle four kids, and working, and house? So I put the thought to the back burner, then today, I was in the office seeing a patient and I got to thinking, I would like to have another one! But again I wonder about Peanut. Truth be told, when we were thinking about having our third, we also were a little unsure if we could handle it. It being so many, not knowing how much things would really change. But we also were a little uncertain, only to turn around and embrace and love Peanut. So I know we'll be ok, but I'm just a little nervous because Amanda is more high needs then typical kids. Needs that hopefully as the years unfold will spread out, and we'll learn to let go. I guess what I am trying to put into words is that I am afraid of pushing Peanut to the back burner by having another baby...as most kids are, but I don't want her to feel left out or set aside.
So I have a question for you...Have you thought about having more kids after having your special kiddo? If you have what kind of timing did you find was good? Does the hesitancy ever go away?

A Whole New Respect For Uncle John

2005-09-11T08:39:00.000-04:00

Let me formally introduce you to Uncle John. He is relatively new to our family, as we only recently adopted him. He came to our side of Pennsylvania to work as an obstetrician/gynecologist just over three years ago. Over the years he has spent a great deal of time with us and is now considered family. You have heard about him in my other blogs, just not by name. For example the friend who called from out of state when Peanut was born and came to my rescue in my postpartum adventures, well that was Uncle John (see Beloved Life - Peanuts Story). On many occassions, throughout the last few years, Uncle John has been there for us as a family from hospitalizations to first teeth. My kids love him, asking when he'll be over to dinner next. They fight over who will play what with Uncle John when he is coming for dinner. The last time he came to dinner the kids cornered him and he spent a good portion of time playing store and reading them stories. They loved it! Everytime James finds our copy of Mr Brown Can Moo, by Dr. Seuss, he says "Uncle John read me!". Elle keeps reminding me that it is her turn to watch a movie with him, I think she chose the new Lilo and Stitch movie. If we should be in the vicinity of his office, they'll ask if Uncle John is at work today and if they can say hi. A truely amazing person whom my husband and I are glad to call family.
I have never been able to understand how on earth he works the way he does. As an OB for a large area practice he takes call at least once a week, only to do surgery and see patients in the office as well. Occassionally he will cover for other practices in the area and take their call as well. What I never understood was how on earth after being on call and in surgery he could stay up, and stick to his schedule without falling on his face from fatigue. Last I checked, he doesn''t drink caffiene which makes it all the more perplexing. I guess over the years you get used to it, after all isn't that what a residency program is for? But still, I can't imagine doing it every week, sometimes twice a week. After I had Peanut and had no choice but to get up after being up a good part of the night to then chase my kids and go about our routine as usual, I thought I got it. But after last night, I don't think I got it until today.
Last night Peanut decided to play. Well, let me back up a bit. She has been constipated so mommy decided to feed her a bunch of watermelon, bad idea. It is a diuretic, and of course it hadn't occured to me until she'd had her sixth wet diaper for the day (usually only 4). When she got up for the third time at 11 pm, I got worried so I tried to give her a bottle of water. Funny thing, she hated it and woke right up. So I gave her something to eat and tried to get her to go back to sleep. Well, she finally did go back to sleep, at 5:15 am. So basically I had been up for approximately 21 hours ( it would have been 22, but I took a 1 hour nap yesterday afternoon). Wouldn't you know I had finally gotten to sleep when my kids wake up and so does the husband. They all get up and dressed, and decide to get coffee. Great idea, I need lots of caffiene today, but after only 2 hours of sleep, I cannot move much less drink a coffee. It took me a good hour to get my tired behind out of bed, I just had no energy to move, at all. As I lay in my bed, I can hear Peanut chatting in ther room. Usually I go right in to get her and put her glasses on so she can see. How horrible of a mommy was I this morning? I kept trying to move, but there was no way it was happening. I finally did make it in, and the little stinker looks up at me from her crib and gives me the biggest smile ever. She just grins from ear to ear, and says "Ba, ba", how do I compete with that? With that smile, I think I can forgive her for keeping me up, so long as she sleeps tonight. So this brings me to my point, I have a whole new respect for Uncle John and the work he does. There is now way I could work the hours he does....well maybe I could, I'll let you know how today goes. If I don't keel over from fatigue, maybe I should go to medical school...after all how different could it be from my day today......
You know what, I really couldn't do it. I think I'd better leave it up to the experianced professionals, like Uncle John. Besides, someone needs to take care of the homefront and feed the family so that they can continue to work crazy hours. I think I'll stick to my kitchen...anyone for some pancakes? If you are reading this Uncle John, you get an extra helping of dessert next time you're here for dinner, you deserve it!
Now, I think I need a nap......
Update: It is presently 4:15 pm, I have officially hit the proverbial wall. Caffeine buzz has worn off...am now trying to not fall face first into keyboard. Brian has ordered dinner, gone to pick it up. I am bathing the kids, eating and falling into bed. Note to self: will never be able to do what Uncle John does without causing bodily harm to patients. Kudos to you, to bed with me!

Insanity Returns

2005-09-08T20:24:00.000-04:00

Today was insane. This is life in my house within my world. I got up and got the kids dressed, fed, and properly cared for in the morning. I then had to take Elle to school, dropped her off, and stayed for an orientaiton for James, with James present. Not a good idea. He wanted to play while the orientation was meant for parents (they omitted that important peice of info). OK, so we make in through the program, but had to leave early as I had a patient to see with a travel time of 45 minutes. So I run home, drop James off to the Nanny, who is home with Peanut so she can stick to her schedule of therapy. I run to the patients home, see her, and run back home.After a quick stop to check in the homefront, Peanut was rolling her way around the livingroom for the OT, which by the way is a new feat (of course she does this for someone other then mommy). Then I run in the complete opposite direction, south earilier I was North, to drop off s package at one of my offices for yet another patient, I deciced I must take a moment to myself. So I make a detour to the grand opening of H & M. I can't miss this opportunity for a free t- shirt (just kidding, it was the lure of the 20% off coupon that got me in). Don't worry, it took me 30 minutes to get there, then there was no place to park (who the heck goes to a noon grand opening besides me?! Don't people have other things to do?) Finally I find a place to park, get out, find the store, and there are 300 people there! What the....ok so I don't get the t-shirt or the 20% off. But I did find a bunch of things for the kids, oh and of course for me too. I left with my wallet a lot lighter then I had intended, but I am going to return some stuff. I bought everthing I found for good reason. There was over an hours wait for the dressing rooms! Thats how busy this place was it was insane! It reminded me of the scenes you see Christmas Eve, with people clawing at items and cutting infront of people in lines....Crazy! So instead of standing in line for an hour I just bought everything and will return some later. (or not!?) Ok so I make it out of the stor ein one peice with minimal damage, stop at the office and go home. But only for a minute as I must go get Elle. When I get home I find I have an unexpected house guest. Apparently my NAnny invited a friend of hers who is also a Nanny over with her charges. I am not happy about this as I have become obsessively germ-o-phobic once my kids get back to school. Anyway, I don't say anything today, I'll say something tomorrow...when I can think how to approach this issue. I run to get Elle at school...she gets in the car with a smile so big, it's great! Finally I get home and Nanny leaves. I am nursing Peanut, when I relise I didn't make it to the grocery store. We all pile into the van and head to market...with three kids it is quite the exciting trip, for those observing. Actually the kids didn't whine, instead they regaled themselves to making Peanut laugh and shriek with delight as they ran her, yes RAN, through the store. Fun! We get home, and i make lasagna from scratch for dinner, and get started on my menu for Saterday lunch with my parents (See a welcome home luncheon). I made a roasted garlic and mashed potato gallete, Fandango salad, roasted garlic green beans with mango salad, apple strudel muffins, fresh bread, pesto pasta, breaded baked chicken, and for dessert chocolate and vanilla cakes. I had watermelon too, but I bought that. Takes too long to maake yourself. All the while the kids are tearing my house to peices, ok I exaggerated, just my living room. Brian gets home, bathes the kids and feeds them dinner as I am cooking up a storm in the kitchen. Finally my day ends as we put the kids to bed and I fall into mine. Tomorrow will be less busy, I hope!
I feel terrible that I missed three of four therapies today. I never, ok rarely miss time with the therapists. As I feel it is very important to keep on top of all that we are working on. What a crazy day. I am tired, so I'll be signing off now.....see ya!

Connections

2005-09-07T09:01:00.000-04:00

Peanut is finally connecting her actions to our reactions. In other words she finally gets it. Yesterday we went to the md for a quick check, after the exam, I had some questions for the md. So while I dressed Peanut I was basically otherwise occupied. After a few minutes, ok i lie, after about fifteen minutes, Peanut has had enough. She becomes very cranky and is crying. So I look at her and say" If you wave Byebye we'll leave". She looks at me then at the md, then back at me and lays her head down. I resume my conversation with the md, and a few minutes later Peanut becomes cranky again, so I repeat my offer to her. This time she took me up on it. She looks at me, then at the md and wouldn't you know it she smiles and waves Byebye! So of course I excused myself from my converstion and left. Later in the day when the Vision therapist was leaving Peanut was again asked to say byebye, and she did! Verbal Cues only! Hooray! The connections are being made.......

Embarassing Moments

2005-09-06T12:18:00.000-04:00

Today is the first day of school for my oldest daughter Elle. At 5, she is entering kindergarten in a new school, with new faces and all the trimmings. So I wanted to take her to school...a special thing that us mommies need to do. Elle got up, got dressed, ate breakfast and was ready with out a single whimper or whine. She gets in the car, and singing along to Hilary Duff we make our way to school. She holds my hand as we enter the school, and go to her classroom, but then the strangest thing happened. She let go of my hand and says "Bye mommie". I wsa all prepared to spend a few minutes with her getting familiar with the room and the kids, but nope, I get the cold shoulder. So I tell her I need to drop some papers off in the office, and I will be back to check on her. She says ok. When I return a few minutes later, she has found the puzzles and is working nicely at the table. I go over to kiss her goodbye, she looks at me and says, " Mommy, you're embarassing me!" SO with that wonderful send off I leave my five year old to her own devices and left. It's so nice to feel wanted and missed. Oh well, I guess we'll se how her day really went when I pick her up later. Love...ain't it grand?

Family Secrets....Revealed

2005-09-05T11:03:00.000-04:00

I may be overly sensitive, but here it is, what do you think? My nephew recently got engaged. The family is elated. The girl is pretty, nice, caring and overall a great girl. But my husband and I had not met her yet. My nephew and his fiance had come in for the weekend and finally we were able to touch base. They came by yesterday to say hi. She is a doll! They are so cute together and make a great match. But here is what I am unsure of. Apparently no one in the family told her about Peanut. It was very apparent when she came into my house, met my son James and was then introduced to Peanut. The expression on her face was sheer surprise. She make a quick escape out to the deck where her fiance and my husband were talking. When I came out she was trying not to look at Peanut, yet I could tell she wanted to "check her out". So I made sure to look the other way, after all I would probably have done the same thing if I was in her shoes. So my question is as follows: the family memebers involved have seemed to be not very comfortable with Peanut from the start. They spend no time around her and when they are around they are inattantive and talk to her like she is a tiny baby. She is not a tiny baby and she actually is only delayed by 3-4 months depending on what you are looking at. So I guess I am curious if I am being over sensitive knowing that this poor girl, who is new to the family was not told about Peanut. On the one hand it could be beacuse the DS is not important or it could be because they are uncomforatble about it themselves, so they just pretend it doesn't exist. When asked if they had told her, we were told no they had not. Was this because of shame or because of indifferance? Like I said I may just be overly sensitive, but what do you think? I normally don't care and prefer that people treat Peanut as she is, a little girl, not a DS first then girl second. But I just felt very akward this weekend, something I haven't felt in a quite a while......The wedding should be fun! I am already looking outfits for my kids and of course for myself.... we'll let you know what happens in November....