Be Thankful and Live For the Moment

With Hurricane Katrina just finishing up here in the North east US, I was watching the news today and it suddenly hit me. Thank God I have my family, friends, health and house. Those poor people in the south, many of whom really are poor, have nothing now. They really have nothing.....They will have to start all over once again after all the water and storms subside. They will have to peice their lives back together, hopefully with all their families and friends safe and well. It makes one very grateful for where we live and what we have...even though it may seem like the world is coming to an end, there are people out there who really are having a more difficult time then you.
So take a minute, as I did today, hold your kids a little closer, call your friends, family, and loved ones and tell them how much they mean to you. You must live for the moment as you never know what is coming up next around the corner. By then you may not have had the opportunity to do or say something, don't wait.....

No Butts About It..The End of an Era

Peanut is butt scooting! She sits beautifully upright, leans forward and working her feet and hands, moves herself slightly forward and in a circle! We have been working so hard at cruising too. Right now she is cruising nicely to the left, same with the butt scooting. She over steps, in other words she has a exaggerated walk right now due to the depth perception issue, we think. But, there are no butts about it, my little girl is on the move, finally!
In an effort to get herself moving, and keep herself moving she is starting to wean. The last two days she turned down her morning nursy in order to play with her siblings and hang out. She also has been refusing to nurse her mid morning nursy...opting instead to nurse a second, pull away and check out the room, then nurse a second longer before pulling off, rolling to sit, and looking around. It is as if she is going to miss something should she dare take a five minute break. It is so cute, yet a little sad, as this is surly a sign that she is growing up....not my little baby anymore :( it is the begining of the end of an era, the nursing era.
But Yaaaaay on the butt scooting! We are so proud, I can't wait to permantly install my gates again.

Seperation Anxiety

As a young child, I always had the fear that my parents would leave me. For that reason I never did well at sleep overs, or overnight camps, so I hardly ever went anywhere overnight. Guess what. They were always right at home waiting for me the next morning, they never left me. Well, at the ripe old age of, well, my current age, my parents are leaving me. Over the years they have talked about moving abroad to live a more relaxed lifestyle, in Israel. Hey, to each his own. The last two weeks they have spent checking out their country of choice and have made a decision. They are hoping to leave in the next six months to nine months. This is all dependant on what jobs they can get and how they can retire at a young age abroad. Well, I am having a hard time with this desicion. Perhap this is because I went from living with my parents to living with my husband. I never really spent any extended time away from home....certainly not now that I have my kids. I guess I have been spoiled living five blocks from my parents, with them helping whenever we needed help. Whether to watch the kids in emergency situations or just to give my husband and I time to ourselves. This is about to end. They are adults, who are free, and over the age of twenty one. They have lived their lives, with us kids, and now they are empty nesters who may do whatever they'd like. I just feel like they are abandoning my kids, their only grandchildren so far, and myself too. After all it isn't like it is so cheap or easy to get to Israel from the US. At approximately $800 a ticket, we will not be going to visit too often. Not to mention a really really long set of flights, boy does that sound like fun with three kids??!! NOT! Anyway, I guess with them over seas I was kinda hoping they'd hate it and scrap their idea. But based on the last phone call I had with them,they are having such a great time, they are going to do their best to move sooner rather then later. Yippy do da day :( Like I said I am being a little selfish and childish, experianceing a little separation anxiety, but I'll survive right? It's not like we don't have friends whom we can call in a pinch, but it is just not the same as living near family. In all fairness, my husbands family lives twenty five minutes away from us, they could help, but they are so busy with their own lives that I never see or talk to them as it is. So as far I I see it, they might as well live farther away then they really do.
I must say that I haven't heard my Dad sound so excited when telling me all about Israel. He likened it to living in a James Bond movie, security surrounding you as you are escorted to and from certain tourist attractions, and questioning everyone at bus stations....forgive me, but that does not sound attractive to me. Actually Israel happens to be a pretty safe place, because security is so high and they do keep a careful watch on everyone. I'm not concerned so much about their safety, but more the distance between us. Just the same, I like my quiet city neighborhood, with loud parties and lightly armed police force. Who knows maybe one day I too will change my mind. But for now I am not. I am not changing my mind, and I am so not happy about my parents desicion, but if they don't mind their grandkids not knowing them very well, hey that's their problem. In the meantime, I need a great big bottle of Valium, a good friend or two who we can call if we need to in a pinch (who really don't mind, and are not just saying it), and a few gallons of mint chocolate chip ice cream from Baskin Robbins. I should kiss those size two skirts goodbye, and say hello to size ten.

Amusement Park Nostalgia

Today we took the kids to a community day at the local amusement park. We spent the entire day running the kids to each ride, and back again; eating all the trimmings unique to amusment parks. You know what I'm talking about, the ice cream in dot form, the cotton candy, the hot dogs and hamburgers...all that yummy stuff your childhood memories are made of. Well, We spent the day creating some great memeories for our kids. They loved riding on the flying airplanes (redundant I know, but they are "flying" airplanes). The look in their eyes, and on their faces was of shear joy and pleasure. What a great day. Peanut enjoyed herself too, watching her siblings as they went up and down on ride after ride. In the car on the way home, the kids could barely keep their eyes open, they were so tired, yet so wired they had a hard time falling asleep after they got home.
I realized that people still stare at Peanut, but it doesn't bother me as much as it used too. Today at the park many people would look just a little longer, look at me and kinda half smile, or completely avoid eye contact. What used to bother me about it was how inhumane people seemed. Acting as if they too could catch what my child has. Now, if I catch people staring, and we lock eyes for that split second of knowing that I caught them, I smile. They look at me like I'm nuts and quickly avert their eyes. What am I smiling about? I have a secret. Her name is Peanut, she has taught me to be a better person. She is showing me how to be a better person every day. She may look a little different, but she is my secret and if people only knew what I know, they'd smile too. Today was a great day, filled with family, and wonderful memories in the making.

Cleaning, Cooking, & Company.....Oh My!

This weekend my house will be hopping. We are jumping back into the entertaining ring, and having a few people over to lunch on Saterday. In the past, my husband and I have always been social butterflies. We love having friends over to lunch or dinner or just to hang out. However, since our lives have become a bit more hectic (meaning three kids), I have found it to be very overwhelming having lots of company over. So we haven't been entertaining. Well, that is about to change this weekend. We're having friends over and my brother too, jump right in, right?
I'm up a little early today as I wanted to get a start on food. I'm making bread, baked chicken, brownies, and pesto for my pasta. This way things are done.
Yesterday I got so much done. I cleaned the house (dust bunnies be gone!), cleaned out closets (Wow, I didn't realize how big our closets were), and junked a lot of clothes and shoes and STUFF we never use (out with the old in with the new). Don't worry I gave it to a charity, who will make good use for it. There was nothing wrong with any of the stuff I gave away, other then it may be outdated, or we have moved onto something different. With all the new found space in our closets, I must go shopping to fill it back up again! :) Don't worry honey, If you're reading this, I'm only joking. By the way, yesterday as you may know from my previous post,I was feeling squished in my house. Well, when I was cleaning it, scrubbing floors, doing windows, bathrooms, dusting etc - I was actually a little glad my house wasn't bigger. I would have been cleaning all day instead of half the day. At times it is nice to have something small, however I would like the opportunity to see what it'd be like to have to clean a bigger house, just not this week.
I almost forgot, yesterday Peanut had a great day. She wore both her contacts all day! In other words she didn't lose any! Yay! I do hope we repeat that scenario daily. My oldest daughter was such a help. All day she kept going over to Peanut, and calling into me, "her eyes are still in mommy!" I hope so without out her eyes, contacts in place, she wouldn't be seeing much at all! Out of the mouths of babes :) Well I'm off to start a busy day....I have to go make my bread, see ya!

Busy Times in a Sardine Box

These last few days have been so busy, I can't tell if I'm coming or going. Where to start..... We got back from our wonderful weekend to start a hecktic week. I saw a couple of patients, which kept me out of the malls, so my husband was happy. Plus, it's always nice to go work, and be appreciated for doing something other then laundry. We have begun to get ready for back to school, by going thru clothes and figuring out what needs to be purchased and what is reusable from last year. Luckily I buy my kids cloths big enough I usually get a couple of seasons out of them.
Now that we are back I feel the incredible need to clean my house. It is driving me crazy. We live in a nice size three bedroom home, but with all the therapists coming through on a daily basis and the entertaining we do my house feels very tight. Tighter on days when it is rainy and the kids can't go outside. So, having said this, We've kinda started looking around the area to see what was avialable in our price range. Not much. Disappointing. Sad actually, considering I have been feeling so cramped for the last six months, getting worse as the days go by. It's just when you have tried to clean up and put things away, but realize there is no place else to put anything, even after you've thrown things away; that's when you need to move. Perhaps, next year we can find something we like enough to call our next home. IN the meantime we'll be in the sardine box at the bottom of that big hill. Synical? Yes, But truthfully I am just glad that we have a home to call our own and that my kids are healthy. Because that is what is important in life, right?! Don't mind my ranting, I'm just feeling a bit squished this morning. Perhaps I'll feel better tomorrow.

Weekend Fun/Happy Birthday 2 Me

So we got off to an interesting start this weekend. As we were getting ready to go to Cleveland to visit with friends, I ended up in the ER, with what they called a "bad GI bug". In other words 24 hours of pure hell. But by Friday afternoon, I was fine. Strange how things work out. We made it into Cleveland, and had a wonderful time with our friends. These are real friends. They have been with us through thick and thin. For example, after we had Peanut, they left their kids in Cleveland, and drove in to spend the day with us. I will never forget, they were there with us when we received the news about her eyes (see Beloved Life - Peanuts Story). They are truly special people. At no point at all during the weekend, did I ever feel uncomfortable, or self-consious about anything (particularly Peanut). It was great. All our kids played, ran around and reaked havok. The kids spent over an hour Saterday afternoon making grape juice, from grapes, as a group. They peeled, and squished the grapes by hand, made each of them a small cup of juice. Funny for us, but my poor friends kitchen floor was so sticky! The way I see it, no one got hurt, no one was crying or screaming, they were really having a blast. It was so fun. I think it was more fun because we were around all boys. I have realized that unless you have at least one boy of your own, you cannot understand what it is like. Boys are cut from a different cloth. They just think differently and do things differently. (That should be read between the lines as: Boys are crazy! They don't think things through before doing them, they just think something is neat to try, so they try it!)
My birthday was this weekend. It was very special to be able to spend the day hanging out with old friends. My husband got me a day at a spa (where will I find the time?!), and a few skirts from this great boutique, my girlfriend in Pittsburgh gave me a manicure certificate, and my friend in Cleveland gave me a great purse. All in all it was a great birthday. I was a little anxious about the next big year, but I think I'll be ok, with all the friends I realize I have.
In my ripe old age, I am able to draw the conclusion that if you have a good friend , or two, whom you can truly trust and share things with, you are rich. If you have your health and a family, you are rich. If you have the understanding of what is and is not important in life, then you too are rich. So while I may not be sure what I want to be when I grow up, I know that I am rich. I have couple of great friends, I have my health, my family, and I know now, thanks to my Peanut, what is and is not important in life. I pretty much have it all. I really am lucky. Happy Birthday to me!

Cruisin' Along

Peanut's cruisin'! We discovered that Peanut may have a depth perception issue. Thanks to some friends at unomas21, and aphakic group. Our team (all the therapists) were puzzled as to why she has the strength, but won't move. I mentioned this on one of the sights, and a parent wrote back about their childs depth perception issues. Apparently this is common in kids who have aphakia (missing the natural lense in their eyes). Once we figureed this out, we started to work around it. Today it paid off! For the longest time Peanut refused to stand against a surface and play. She always seemed to be scared, and would constantly lean back against you. Once we discovered the depth perception issue, we put her against the sofa, instead of the ottoman. That way it seems to be consistant black before her, and continuing up the wall. Today she cruised for the first time (with some guidance). But she moved herself on her own. She weight shifted and mover her hands and feet along the sofa to get at a toy. Way to go Peanut. It seems this week wasn't so bad after all. I just hope things continue to go so well.

Covered 100%

I got Peanuts lenses covered! Well, actually my pediatrician did. After my experiance this morning with the Opthamologist, I decided I'd give it one more try. This time I called my Pediatrician. I explained to him the situation. That my insurance company said under the current diagnosis code Peanut was ineligible for coverage of lenses or glasses. But that if we added a code to include her current lense free state, aka Aphakia, it would be covered. In five minutes my Ped, had added a code, and told me to give it a whirl. I called my insurance company, and guess what? Her lenses are covered 100%. Including future lenses, exept those that we lose. Guess we need to not be losing them so much. I must say that there are still a few people left in the world who are willing to take a few minutes out of their day to help a fellow friend in need. Scott, Thank You! You are the best pediatrician ever. I thought that before, and now I definitely know I'm right! YIIIIIIIIPPPPPY!

Building Blocks

Today, while working with the Developmentalist, Peanut did the most amazing thing. After verbal quing and demonstration, she placed a block on top of other blocks! She repeated this a couple of times before signing all done. The therapist and I were in shock that she had completed this rather complex task. Yaay for Peanut!

James, my son, had a great morning in speech, using his words to ask for "more paint please" clear as day. He just surprises us out of the blue with words. But then this afternoon he had a complete meltdown, because I had no idea what he wanted. I still don't know, but I gave him his drug of choice, juice, and he was suddenly contented enough to forget about it.
Miss Elle has been a great helper with the dishes, cleaning up and making her own bed all without being asked. That makes up for beating up her brother every now and again I suppose.

On the lens issue, I spoke with the md, who was none to pleased that I keep calling him to find out his opinion on the next stage of trying to get coverage. Today he yelled at me and said he would think about adding the diagnosis code that I need added in order to get coverage. What the Heck? It's two seconds of his life to add a four digit code onto her chart and fax it into the insurace company. That's all I need to get coverage. At least thats what the insurance company has told me. I'm a little steamed, but hey life goes on, it's not like I'm spending umpteenth dollars on lenses for my child (yes I'm being synical, sorry). Wouldn't you be steamed if you were paying out your hard earned money when your insurance would pay for it? Don't get me wrong I would pay whatever I needed to for Peanut, or any of my kids. I just prefer the insurance to pick it up, or else why am I spending the money on the insurance.

Anyway, I guess everything that has gone on today are all just building blocks of the future. Peanut putting on block on top of another, James using his words, Elle being such a big helper, and the md being tough, are all the start of the next great thing. Perhaps the next building block will be even better then these.

When I Grow Up...

As my birthday approaches I have been doing alot of thinking. Dangerous, I know. Nonetheless, I have been thinking about where I am today, and what I want to be when I grow up. Ever the unsatisfied person that I am, I am still not 100% sure that I am doing what I want to do most, or what I could be doing.

Since before time began (since I was 12) I wanted to be an attorney. I loved the way laws were written and being a lawyer looked so cool on tv. So when I went to college I clerked at a prestigious law firm, and was going pre-law. Then I found History and Latin America. I dreamed of going to Venezuela and living amongst the people I loved learning about. What great political and social history. These plans were all fine and dandy, until I found psychology. Then I decided I'd become the next greatest legal psychologist. I'd find ways to convict the hardest of criminals by reading their behaviors. Then I got married. That changed everything. Now I had grown up on one level, moving from single girl to grown up married woman. All my friends would ask me for relationship help. I'm still not sure why?! In school I kept at the Legal Psych thing, really getting into it, until I found Ed Psych. Then I dreamed of guiding the youth of America to their fullest potential. Helping those kids who would fall thru the cracks without my guidance. Then I graduated. I left college with a dual BA in History/Political Science, minoring in Psychology and Latin American Studies. Boy, do you think I couldn't make up my mind or what?!

So I graduated, still unsure of where to go with my life. I applied for grad school for an MA in Counseling Psychology, where I was accepted, but never started, as I became pregnant with my oldest, Elle. I would have given birth during finals. I can always go back to school, I keep telling myself, as I look into going back to school for Physical Therapy. I end up pregnant with my second child, James, and never make it into that program either. After I had James, I decided to go back to school, again. This time for Lactation Consulting. This time I made it back and completed the program (short program). I love doing what I do. I enjoy working with new moms and their babies. However, I can't get rid of the nagging feeling that I am still not what I want to be when I grow up. Since we had Peanut, I have come to spend alot of time with medical professionals in various and sundry fields. I am coming to the conclusion that I too would be great in that field. It would make alot of sense too, as I am an Allied Health Professional now, it would just add to my qualifications and knowledge. After all, who in their right mind reads medical texts, and journals just for the hell of it, as slow saterday morning reading? ME. I know stuff about stuff I never would have thought about. Scary actually, but really REALLY cool. My friends think I'm crazy, my husband thinks I'm Nuts, and I don't know what to think. I think I'm getting really old, with no direction in the profession department.

I am the very proud mother of three beautiful kids. Whom I love dearly, and would give anything for. I love my kids so much I keep thinking perhaps a couple more?(Hey, stranger things have happened). I love my husband, and am so proud of him and how far we've come. So, what is it that I want to be? I don't know. Perhaps a Nurse Practitioner, or maybe even a physician. I just know that I want to be something that I love. I want to look forward to going to work (I'll always look forward to coming home). I want to feel as passionate as I do about being a great mom and wife, in the workplace. I know I've always wanted to be a mother, and wife, and I think I'm doing ok at those goals. Next stop Mommy all grown up, still wondering what I should be when I'm old and grey, and all grown up.

Bubbles Galore!

Last night Peanut reached a new milestone. I was giving her a bath when suddenly she leans forward. I hear bubbles coming from the tub. Thinking she was in trouble, I quickly pull her upright, as she suddenly chokes on some water. The silly girl has the BIGGEST grin on her face. As soon as I let go of her, she doubles back in half, and blows bubbles into the bath water. She repeats this a couple more times, until mommy decides she can't take it any longer. Then, as I lift her from the tub she looks at me and says "mama". YUM! She is so cute. It is little moments like these, that many people take for granted. But not me. One day at a time, one incredible moment at a time. That is how life is to be lived. One Peanut lesson we learned early on is to never take anything for granted. She has taught me so many things in the year since she was born like - Never dwell on what's been done, said, or not said, just live for the moment and for those moments yet to come. Last night was one of those moments.

A Leg Up for Peanut

I put Peanut on a waiting list for Riding for the Handicapped in our area. I had called the barn where I used to ride for the University of Pittsburgh Equstrian Team (back in the old days). I had remembered that they used to have two days a week when kids with varying disabilities would get the chance to ride horses. I remember seeing how happy the kids looked when they were riding. So I wanted Peanut to have a chance to do the same. Besides, horseback riding is a love of mine, what better excuse for Mom to get back in the saddle? Anyway, it turns out there is a two- three year wait list for the program. Guess who is on that list? Peanut. They remembered me, and said they's put her on now. So in the next couple of years our phone should be ringing. You can bet I'll be tacking up and ready in no time!

All Grown Up

It hit me today, that my oldest daughter has grown up. When did this happen? could it be that missed my four year old turn five? Today, as I was catching up on emails, I hear noises coming from downstairs in the kitchen. I run down, thinking my son, J, is getting into mischief. Instead, I find my five year old E has taken the lemonade out of the refridgerator, gotten herself a glass, and is pouring herself a drink. When she is done, she cleans up after herself, and goes back about her business. She's so grown up!

Lo$t Len$e$

Our saga continues with Peanuts lenses. We bought her her new $400/pair Silsoft lenses brought them home & put them in for the first time yesterday. But we LOST one. ARRRGH! I looked high & low. We used a flashlight to check the floor on hand & knees. We walked around barefoot, hoping a lense would adhere itself to our feet (I enlisted the kids in this fun & exciting activity, they thought it was a great game!) Security was tighter at my house then at Pittsburgh International Airport, as we did full body checks with flashlights, hair, shoulders, clothes, shoes, you name it we checked it. Nothing. $200 down the drain. We love Peanut, but in the last month she has cost us four lenses & a pair of very scratched glasses (which now I need to figue out how to replace without giving them the actual glasses). I ordered a replacement lens last night, & put a rush on it. Silsoft lenses, for those of you who are new to these, are special contact lenses made for people who have had their own lenses removed due to cataracts. They are used in what is called aphakic condition, have a hard center, & soft edges. They are very specialized, & very pricey. But very worth it, cuz they make a huge difference in Peanuts vision, when they stay in her eyes longer then a few hours.

Beloved Life - Peanuts Story

I have had this written up since Peanut was three months old. I never showed this to anyone, But here it goes:

When I first found out I was pregnant, I could not believe it. How could I possibly be Expecting? My first two kids were my miracle babies, conceived following infertility treatments. There was no way! But sure enough I was. Things looked good. I was sick the first five months, just barely gaining any weight. From the moment I found out I was pregnant, I was waiting for the other shoe to drop. It was too good to be true. So fine, I was really sick during the pregnancy, but something just felt off.

At 20 weeks, I went for my ultrasound. That's when the other shoe started to drop. They found an echogenic cardiac focus, a calcification of one of the ventricles, which is a soft marker for Downs. We were encouraged to speak to our ObGYN regarding our options (???!!!) As we drove home from the ultrasound I was hysterical, I called my obGYN, who's a friend, pulling him from another patient to cry hysterically over the phone the results of the exam. Amazingly he understood me through tears, and reassured me everything was fine. We'd just go back and do the triple screen (which I never do, cuz it wouldn't change anything). That too came back clear. But in my heart of hearts, I knew something was off. Everyone told me to forget about it, and just enjoy the rest of the pregnancy, everything would be fine. I must say that once the morning sickness passed, I felt great. This was the first preganancy I actually felt good and enjoyed being pregnant.

At 35 + weeks, I went to bed early on a monday night in April, around 9pm, feeling especially tired. When I awoke a little over an hour later, my contractions were as strong and as close together as they had been for the last few days. As the next contraction begins, I roll over to go back to sleep. Before long I feel that magic Pop! and my water has broken. Knowing that I am an automatic admission , I call for my husband and tell him to get everything ready while I phone the Md. Finally, after what seems like forever, my mom arrives and we kiss our two kids goodbye, telling them we are off to get their new baby. When we get to the hospital, we are moved quickly from the er to the birthing center and the triage unit. We are stuck sitting in the waiting room for over an hour. This was not pleasant as my water had broken, not to mention very painful. Finally we are taken back into a room, and wouldn't you know my contractions space out. When the md arrived, I was so relieved to see a face I knew. She ordered pitocin, as I was just 3 cm, an epidural (cuz I demanded one) and left.

We are in the Labor/Delivery/Recovery room and the anesthesiologist comes in for my epidural. As it turns outhe knew my husbands cousins and he and my husband hit it off talking about Meat (buffalo, beef, my apologies to all the vegetarians!). The Epidural worked perfectly, before long I was ready to go. The Md comes in and the show is on, after a mere three pushes baby is here. The cord is wrapped around its neck three times, md undoes the cord, and places the baby on my belly. It's a girl! The md has a worried look on her face. She wants to have the baby checked she's not breathing very well. As they take the baby over to the warmer to have her looked at, I realize I was right. She had been so floppy when she came out. I knew right then and there she had Downs. I remember them bombarding me with questions, Did we have any genetic testing done? Was the test normal? and then the dreaded words, We think she has Downs. At that moment my heart stopped. My perfect 7 hour labor and 3 pushes delivery, my perfect pregnancy with no complications, my being able to concieve and carry to full term came to a sudden unbearable crash. What?! no. not my baby, how can this be? what will I do? What does this mean for my dreams of a perfect life? I knew it was too good to be true. Life is never that simple.

I think it made it more difficult when the mds beat around the bush. They would say she looks like she has because of x y and, z, but we could be wrong. I was very upset. But I knew I had to nurse my baby. I needed to hold her and cuddle her. After a while, I was able to hold her (she needed a little O2), I put her to breast. As I nursed her, I gazed at my little bundle of unknown consequences, unknown medical futures, a great big question mark. As she opened her eyes and looked up at me, I felt almost like I was in heaven, as if I could see clouds in her eyes (later I learned these were her cataracts). For almost 36 hours following her birth, I cried. I was so afraid of the unknowns associated with DS. I had no idea what to do I was more scared then I had ever been in my whole life. As the tears came, so did comfort. As family and a couple of friends came to meet the newest member of our family, they asked to hold her. Offering support, both emotionally and physically. We were told the sky is the limit; money is no object, because everyone would pull their resources to help. They would do anything we needed to help this baby live to the fullest extent - whatever that may be. One friend came daily, with ice cream, another came with hugs and an open ear, and yet another called from out of town and came in early (on the way back from a trip, and into the office) in the morning to spend time with me. These are amazing friends.

As our families rallied around us, we came to realize that things would never be the same. As the phone remained silent. No one was calling. A couple of friends came to visit. We had not hidden the fact that our baby had been born with DS. When we had called from the hospital to tell people we told them right up front, "we have a new baby girl, but you should know she was born with Down syndrome." People did not know what to say or do. So many chose to do nothing at all. No flowers were sent, no cards, no balloons, no presents. Absolutly nothing.We realized who our real friends were. The ones who accepted us for who we really are. Not the superficial friends. On the flip side, the strangest thing happened. People with whom we never imagined any common ground were suddenly our biggest supporters. Coming with ice cream and a shoulder to cry on. We got so much support from individuals, couples, families. We began to feel we were not alone. Just as we were settling in we got the news her heart was fine, BUT she had bilateral congenital cataracts, and surgery was to be on Monday. My baby would be five days old, going in for surgery. I could hardly beleive it. Luckily, as we got the news, friends of ours who had driven down from cleveland, were with us. They reminded us that it was not her heart, thank god her heart is fine. It is just her eyes, small, but we needed to count our blessings. Let's take it one day at a time. What a help!. Suddenly, nursing became a problem. Latching became troublesome. I spent two days working to get it just right. We did everything, Syringe freeing, SNS, finger feeding, cup feeding. I was pumping every two hours.I took this very personally for two reasons. First I am a lactation consultant by trade. Second, I knew my baby would need every ounce of extra immune support she could get, my milk would fill the ticket. Not to mention It was something I could control. I needed to be able to control some small aspect as my world was spinning out of control.

As we tried to come up with a name for our special baby my husband and I realzed a few things.We needed a special name for our baby. We had been given a special baby, a special soul whom god had deemed us worthy to recieve. For whatever reason we were chosen. We may never know why, but it is in His master plan. We are so lucky we realized, she is destined to change us in ways we may never know. She will touch everyone she comes into contact with in many different ways. She is special. We love her no matter what. She is a beloved life. Thus her name means beloved life. A few days later, after being under the bili lights due to elevated bilirubin levels, we were getting ready to be discharged. Only to be readmitted in Childrens Hospital for her first of two surgerys.

In the preop waiting room the surgeon marked her eye for lense removal, and for the second time in five days, my heart dropped. I kissed her goodbye and they wheeled her away to fix her eyes. Waiting seemed like eternity, but 2 and a half hours later, the surgeon comes out and says everything went well. In the post op, she was covered in wires, tubes, o2 and iv's, I just wanted to hold my baby and nurse. I did just that. That night I ended up back in the er myself, because they thought I had begun to hemmorhage. My friend (the ObGyn) met me at the er so I wouldn't have to wait for hours to be seen and could get back to my baby sooner. I am eternally grateful. I was back within two hours at my babies side, I never even missed a feed. Two days later we repeated the surgery, That night when she woke up to nurse, with a tv on for light, I noticed something I had missed before. When she opened her eyes she looked up at the lights playing on the ceiling in a way she had never done before. I relaxed. In that moment I knew we'd be ok. We were sent home the next day.

16 months later, as I nurse my little peanut to sleep (yes she is still breastfed, we were successful in the end), I look at her, and she looks at me and I can't believe she is here. In the short time that she has been here, she has touched many lives. We were right. Our life has changed. It changed the moment Peanut was born. But it hasn't changed in a bad way. Quite the opposite. She is the light in our lives. We have come to look inside people, not judge by the exterior. We learned what true friendship means, and that it is not important who has what car/dress/shoes. We have grown our extended family , coming to include individuals we never thought we could be so close too. What does matter, is that we all have each other and our health. Everything else is just icing on the cake. We are immensely happy with our cake. Who needs icing?

Now when I look at Peanut, as she sleeps in my arms. I see joy, admiration, inspiration, spirit, stamina, strength, and unbridled, unabashed emotion. I can't imagine ever crying over such a cute, adorable delicious amazing baby like Peanut. We All love her so much! ( her siblings are forever crushing her in gigantic hugs). Nothing could ever change that.

Mom Knows Best.....

I am the best. Ok that, may be the over statement of the century or a very self rightous / boastful statement. At least I can say that Mom Knows Best (at least some of the time anyway). I took Little Peanut to the Md again today. This time they agreed that she had had a reaction to the MMR vaccine and had the measles (a relatively mild, non-contaigious form). But, they also agreed that she was simultaneously having some sort of allergic reaction to something or other. Go figure. I guess I should say the md's and I are at least even. The spots are finally starting to fade, and no new ones appeared today. Hopefully we can start getting back to normal now.

We had a great day today. Peanut started going backwards:) I put her on the floor so she could have some tummy time, and next thing you know she is clear across the room, actually in the other room. So I move her back into the livingroom and tell my older daughter to not move Peanut. I left the room again, only to find that she had gone back to her spot in the dinningroom. This time my eldest , E, says she didn't touch Peanut. So, third times the charm, right? I saw her push herself backwards, in attempting to go forwards. Hey, you gotta start somewhere! This is a big accomplishment, since she began pivoting on her tummy. Hooray for Peanut!

My son also had a great day. He is officially diagnosed with a severe expressive language delay and phonological disorder (officially they won't make the diagnosis until they turn 5, but they are treating him as if he has apraxia). He has started using three word sentences, unprompted. He does better, with max queing, but needless to say I am not complaining. He came out of his speech lesson and looks at me and says " Mommy, I fishing". Clear as day. Apparently he had pretended to go fishing, and "fell in " he was so excited about it!

The cutest moment of the day was when my two kids E, and J decided to wash my dishes. They also washed the counter and the floor and my little carpet in front of my sink (in other words, they overflowed the sink all over my kitchen). They did a great job washing my dishes! Although I think that next time they should be in their swimsuits :)

Maybe tomorrow my kids can do the laundry, or perhaps dust? Maybe not, too much clean up for mommy!

Wake Up Call - Seeing Spots

So my husband is out if town for the night last night. The kids were so good, going to sleep on time, no fighting. But for some odd reason around 4 am my son gets up and is calling peanut. He is in her room saying "come play!". then my daughter gets up and decides she wants to play polly pocket, AT 4:30 AM!? ok, fine play in your room, by now peanut is wide awake and shows no signs of returning to a peaceful slumber. So I pop her in her crib, turn on the lights, lock the gate to the stairs, and go lay in my bed wishing I could be fast asleep. How come they don't do this when daddy is home? To allow him to share in my experiance, I politley email him to let him know the story (better then calling). My son comes in my room a short time later eating a cookie. Which baffles me beacuse the gate is closed, and I thought I had thoroughly cleaned the upstairs yesterday. Apparently I missed a spot. I wonder how old that cookie was? Ew! A short time later, my oldest daughter comes in and announces that peanut has more spots on her head and that she is scratching her hair. I get up to check and sure enough, she's got more spots. I just can't believe this is an allergic reaction, seeing as how we've not had any new foods since friday/saterday, and yet we are still breaking out in new spots, while the old ones are begining to fade. I'm at a loss for words. Perhaps the extreme lack of sleep is the culprit, if so I'm in trouble, 'cuz its only 8:16am. It's going to be a long day.

Manic Moday

Just like the song, today was just another manic monday.

I spent the early part of the morning in speech therapy with my son, at an outpatient clinic. He has a severe expressive language delay and a severe phonological disorder. In other words, he is a late talking kid, who sometimes has the words, but chooses not to use them. He did really well today. He was able to replicate all his words without max cuing! As a reward, we went for coffee (he gets chocolate milk, and i get the coffee).
We went from speech to a Md appointment for little peanut, to confirm her diagnosis. Ironically, the nurses all agreed she has measles from her vaccine. However, the md did not agree. So although we out numbered her, becauase she is the md, she won, saying it was some sort of allergic reaction. I completly disagree, but smiled, said thank you for your time and left. I am treating her as if she has the measles. As other physicians (3), have agreed with me.
Next stop, home for a quick bite to eat before heading out once more. After all, we have cancelled therapy today beacuse we were unsure of the diagnosis. Don't worry, Peanut spent her hour working on the floor, trying to crawl, but moving backwards instead. She is getting really good at transitioning from sitting to laying on her tummy (mostly by belly flop, but starting to show signs of purposeful movements).
While we were home, my son, having had the best morning ever in speech therapy, talking up a storm, decided to have a complete and total melt down. Well, not using his words, I have no idea what it is that he wants. So he cried for a half an hour (AARGH!). But then it was fine, 'cuz i gave him apple Juice, his drug of choice.
I must add that I have found such special individuals who are willing to spend time on the phone to help complete strangers. I am still trying to get Peanuts lenses covered by insurance, and a wonderful person, sent by heaven, has put the time into finding out how she had gotten her sons lenses covered, so as to help me out. She has taken the time out of her busy life to help out a complete stranger. The world is not such a bad place after all. To my new found friend, you know who you are, Thank you, and may you be rewarded many times over for oyur incredible kindness.
Daddy is out on the road once more, trying to keep things moving smoothly with the office expansion...so far so good. Although it will be hard to sleep tonight, seeing as he usually gets up with the older two kids, and I for peanut. Not much shut eye happening tonight. Gotta go make dinner.....

Measles, Oh My!

We think Peanut has the measles. What fun! Over the weekend little dots started appearing all over her. From the start of them on Friday until this morning, they have been multiplying, until now when she is covered from head to toe. Poor girl, she is so itchy, she rubs herself with her arms and wriggles her feet on the carpet in an effort to scratch them. We think she got them from her MMR vaccine, which she received exactly ten days prior on friday. The pediatrician assures me that she is not contaigious, but wants to see her tomorrow to visually confirm the diagnosis (they made the Diagnosis over the phone). So until then, we are staying close to home, just for the sake of my little peanut.
We gave her some benedryl to help with the itchies, half the dose we were supposed to give so as not to make her too sleepy, but the funniest thing happened. I must preface this by telling you how flexible little Peanut is. She will sit on the floor and bend completely in half so that her nose touches her toes. Well this morning, about 20 minutes after giving her her medicine she is playing on the floor reaching to get at a toy, bending in half when she suddely gets really quiet. My husband and I tell her to get her toy and sit up, which she usually does, but she does nothing. We call her name, nothing. Suddenly we hear her snoring. The poor child, she was so tired from being up all night, and then the benadryl kicked in, she fell fast asleep, bent in half like a pretzel! I picked her up, nursed her and popped her into bed. She has slept for the last hour and a half. I hear her now, talking in her room, "mamamama bababa". Time to go get my itchy angel baby. She is so CUTE!

Simply Amazing

My little Peanut, my child with DS, had such an amazing day. We, my husband and I, had decided early on in Peanuts life to do anything and everything we could to help her get the best start in life. Having said that, we have therapists coming in and out of our house daily, sometimes multiple times a day. Just when it seems that all the theapy is nothing more then a dialy routine, with little improvements here and there, Peanut surprises us. Like today. We have been working on picking up blocks and putting them into a box, then taking them out again. Peanut go the putting them into the box, following hand over hand instruction, but finally today she did it all , all by herself, with only verbal cueing. Hooray for Peanut!!!

Day One

Today was insane. I had to apply for MA for my son, beacuse our private insuance coverage ran out for his speech therapy. We got to the office ten minutes after they opened, only to be told we had to go to a completely different office on the other side of town. Well, that did not get crossed off of my list of things to do today. Maybe next week.

My daughter, now 15 months old, was born with congenital cataracts associated with Down Syndrome, and had her lenses removed at five and seven days old. Due to her age, they are unable to put in an implant because the eye grows so much it could tear. So, she has to wear contact lenses in order to be able to focus properly, and thereby develop as she was ment to. The problem that lies herein is that our private insurance will only cover one pair of contact lenses post a cataract surgery. That is of no concern to the average patient who is in their sixties. However, as an infants eyes change so quickly, we need to change the power of the lenses accordingly. Again, this allows for her to follow the developmental path that she needs. We are now on the third pair of lenses this year, and now the lenses are becoming more expensive, as she needs more specialized types. We thought perhaps, that the Medical Assistance that we have for her would pick up the cost of the lenses, since the primary insurance would not. However, as it turns out, neither will pay. Furthermore, once MA has been contacted, and has denied coverage, the billing physician or optician, cannot bill me. This puts us in a tough spot, because the physician who has already supplied us with the lenses is unable to be reimbursed. At this point the physician has informed us that he will no longer provide us with the lenses. We will have to find someone who is willing to work with us (essentially find someone who does not mind never getting paid for a product they will deliver, or paying full price ($400/pair) out of our own pocket). We have opted to pay the price, so as not to cheat anyone out of their livelyhoods.

I have contacted both the insurance company and our case worker, and after numerous phone calls to many individuals at various administrative levels, have gotten nowhere. I have also contacted the insurance commisioner in the state we live, to ask if there is anything they can do. They have nothing, although we will be filing a complaint regarding the first pair of lenses that the primary insurance has yet to pay for.

So I spent the better part of the afternoon chasing my tail in circles looking for funding.

After therapy, and housecleaning, dinner making and cleanup, I am taking two minutes to put my exhausting day to press. Quite the exciting life I lead. Time to take a long hot Bath, I need it.

On a lighter note, Little Peanut, As we call my youngest daughter, the one with Downs, did something amazing today. While working with her OT, she leaned all the way down, to grab something off the floor, while standing with support. This is the first time she truly reached out of her comfort zone, to get at a toy. She cried for a second, then looked up at me ( i was clapping and saying yay!,) and gave me ( and her therapist) the BIGGEST smile ever. What a great moment!