Sunday, December 30, 2007
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!
Tuesday, August 21, 2007
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!
Monday, August 06, 2007
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 email@example.com. Visit her blog.
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.
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Thursday, July 26, 2007
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!!!)
Sunday, July 15, 2007
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?
Friday, July 06, 2007
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.
Tuesday, July 03, 2007
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!
Sunday, June 24, 2007
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?
Friday, June 22, 2007
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..
Wednesday, June 13, 2007
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!
Sunday, June 10, 2007
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.
Saturday, June 09, 2007
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!
Friday, June 08, 2007
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.
Thursday, June 07, 2007
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!
Wednesday, June 06, 2007
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!
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...
Wednesday, May 30, 2007
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?
Tuesday, May 29, 2007
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"....
Hope you hade a great weekend. We did.
Tuesday, May 22, 2007
Monday, May 21, 2007
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.
Friday, May 18, 2007
She carries it around in school, "shopping" with the shopping cart.
I am so glad that she is enjoying school. What a releif!
Wednesday, May 16, 2007
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.
Wednesday, May 09, 2007
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.
Sunday, April 22, 2007
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!
Sunday, February 18, 2007
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....
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
Wednesday, February 07, 2007
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!
Monday, January 29, 2007
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 Center800firstname.lastname@example.org
Monday, January 22, 2007
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.
Thursday, January 18, 2007
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.