Wednesday, January 30, 2008

Happy Birthday, Jamie!

Dear Jamie,

Five years ago today I had no idea how my life would change. I knew that life would change - after all, I had recently quit my job, weighed 40 pounds more than normal, and could feel a little person doing somersaults in my belly. I just did not know in what form those changes would be. Motherhood has been beyond my wildest expectations. No one can prepare you for how incredibly hard and how incredibly amazing it all is.

I read all the parenting books, but no one told me how I would erupt in fits of giggles watching you dance or listening to your knock knock jokes. I watched friends play with their babies, but no one clued me in that I would willingly brandish a sword and refer to myself as "Donatello" or "Splinter" as we marched around the house. No one warned me that I would love you so much that it would make my stomach feel funny and my chest tight and even fill my eyes with tears. Or that I would start welling up over the Johnson & Johnson baby commercials when, before having you in my life, the only movie that ever made me cry was Dances With Wolves.

As you grow, I know that each day is a gift for what it brings. I realize that, even though you are no longer my baby, I still love to watch you sleep at night (but not in the scary way, like in the book Just In Case You Ever Wonder). I love to hold you on my lap and read books together. I love how the majority of my photos of you are very sweet and slightly goofy. I love to watch you carefully hunt in your I Spy books, pose your ninja turtles just so, and arrange your stuffed animals before bedtime - all with the careful precision and attention to detail that you have inherited from me. It has been a wonder and a privilege to be your mother over these past five years.

We love you, Jamie! Happy Birthday!

Monday, January 28, 2008

Gotta Love It









Simon Joseph - Incredibly handsome at eight months old.

Saturday, January 26, 2008

Awareness

Around the breakfast table this morning, Jamie was questioning us about the day's activities (it is very important for him to know the itinerary of each day). He asked, "Do I have school? Do we have swim class? Does Clare have physical therapy?" As I answered "no" to each question, I explained that today was the weekend and a day to play at home all day long. Then Jamie asked, "Does Clare have Williams syndrome today?" I was floored and taken aback by the unexpected question.

We have briefly explained to Jamie in the past that Clare has something called Williams syndrome. One time, he overheard us discussing it and asked what that was. But I have no idea how much sinks in. Jamie is a very intelligent almost 5-year old, but you never know what they really pay attention to. So I explained to him that Clare will always have Williams syndrome. I told him that was the name for why Clare has her heart boo-boos, took a long time learning how to walk, has help from Jen and Kelly (her therapists) to teach her how to do things. Jamie grasped this simple explanation and added, "And why Clare doesn't like to eat anything!"

It was an eye-opener to hear Jamie ask about Williams syndrome. I know that he will know all about it someday. It will always be as much a part of his life as it with Clare's and our entire family's. I was just surprised it would happen so soon.

Wednesday, January 23, 2008

Endocrinology Fun

No, those two words really don't go together. But Clare did have her regular 3-month endocrinology appointment today. Usually the appointments are fairly routine - Has she missed any doses? Nope. Do you see any symptoms? Nope. Let's check her levels and see you back in three months. Great.

Today, however, was one of the best endocrinology appointments of all time. (Might be a stretch, but not really, if you've ever endured an endocrinology appointment.) First, Clare's blood pressure was 104/58. I don't think I have ever seen it that low! She sat so still while the nurse took her blood pressure. Then like the good little heart patient she is, she offered her second arm for another measurement (many times, Clare has to have her pressures checked in all four extremities). It was her lucky day that the nurse only needed one blood pressure measurement. A big relief that Clare's increase in her medication dose did the trick in bringing her blood pressure back down. With this news, when we see her cardiologist in March, I am fairly confident we will not be sent to have an MRI done of Clare's renal arteries.

Second big news was how much Clare has grown! She now measures 34.5 inches and weighs 23 pounds, 4 ounces. That's an increase of over 2 pounds and an inch. She has actually made it onto the growth chart for height (at the tenth percentile) and has more of a curve in weight (she will probably never be on the chart for weight, but a curve is better than a flatline).

Our third big news is that Clare's endo is trialing her off her thyroid medication. By age three, the crucial brain development stage when the thyroid is ultra-important has passed. The thyroid is still very important, but it's a safe time to see how Clare does without taking Synthroid, the synthetic thyroid hormone. In the long run, coming off her medication for six weeks won't harm her. Clare's dose has never increased since she was diagnosed with hypothyroidism at six weeks old. So her body is producing some of its own thyroid hormone, and her endo feels she is a good candidate to trial off the medication. He will test Clare's thyroid levels in six weeks and see how her body does on its own. I am excited to trial her off the medication (one less med would be great!), but I am also not holding my breath since Jamie was also trialed off at the age of three and his levels plummeted. He is now on Synthroid for life. Clare's endo is also going to check her calcium levels in six weeks. If they are in the solid normal range (as they have been for the last year), then he states the chances of Clare developing hypercalcemia are slim and she is in the clear. We will do a couple rounds of blood work on her thyroid levels and see the endocrinologist again at the end of April.

So now the fun.... enjoy our crazy, adorable, sweet, lovable children!

video video

Tuesday, January 15, 2008

Evals Here, Eval There, Evals EVERYWHERE!

Clare had her six-month evaluation with Easter Seals today. Her OT, PT, and a speech therapist (along with a student shadowing our PT) came to our house and spent the afternoon with us. I had the joy of 1) observing Clare's evaluation while pretending to not observe so Clare would not be distracted while 2) making sure Jamie stayed out of everyone's way while at the same time making him feel involved and useful and not missing out on the fun while 3) entertaining, breastfeeding, rocking, swinging, bouncing Simon while 4) answering loads of questions about Clare's current activities while lastly 5) overseeing the furniture repairman who was repairing a gouge in our new bunk bed set. It was a challenging afternoon for all involved!

Clare continues to lag behind when it comes to gross motor skills. She is currently at a 12-14 month level, which is up from her pre-walking 10-month level at her June evaluation, but still very low. I know Clare’s hurdles are that she does not climb. She cannot run or jump, has trouble on uneven surfaces, does not do stairs, and cannot even manage stepping up and down on curbs. She even panics when faced with a low threshold that she has never encountered. She has the three floors of our house down pat, but wants to hold hands when at someone else’s house and needs to step from a carpet to wood floor (which has an almost nonexistent difference in height). We are working on the stairs and encouraging her to step up and down alone, but she prefers to be carried.

All evaluators noted Clare's difficulty with visual perception and focus. We will be exploring in the near future having her seen by the special developmental opthamologist and researching vision therapy. There are pages I could write about everything they noted in that area. Bottom line is that Clare is having trouble, and we are going to try to fix it!!

Clare’s speech and fine motor skills are more at a 24-month level. Her vocabulary has exploded, and she chats all the time (about 50% is understandable). The cats and baby dolls get lots of scoldings these days (apparently there is a lot of biting going on in the house because I hear many “no bites” and see frequent finger-shakings at animals and dolls – I do feel bad for them because the time-out spot of choice is in the play kitchen oven). Clare has started telling knock knock jokes. Okay, she has a repertoire of one, but I am pretty impressed with it, especially since she came up with it all by herself:
Clare: Knock knock
Who’s there?
Clare: Midnight
Midnight who?
Clare: Meow
The speech therapist noted that although Clare can manage almost all the consonant sounds, she has a lot of soft sounds (such as soft “b” and “p”). She foresees that Clare will definitely have speech therapy added to her schedule once she starts school.

On the positive side, Clare is at age-appropriate levels in her receptive language skills and self-help skills. We were very pleased to hear this (even though we knew she was doing well in those areas). Following Dr. Mervis’ advice in not coddling Clare, we are encouraging her to be more independent and do things for herself. She sleeps in a bottom bunk bed now, helps with dressing and undressing, brushes her teeth, washes in the bathtub, and has recently started potty-training (very recent, many M&M bribes, and Elmo is learning, too). Clare is slightly afraid of our small potty, so we are taking it slow. But it is gratifying to hear that our hard work is paying off in that Clare is where she should be in that area. These are the skills that Dr. Mervis said will make a difference in Clare’s adult life. We are even experimenting with no more coddling when it comes to food. Clare is served what the rest of the family eats and we go from there. I have seen her eat things I thought she would not be able to eat, and now we are wondering how much of Clare’s eating frustrations are due to her oral motor skills and how much are due to her wanting her own way.

The next step is for the school district to review Clare’s evaluation and set up their own. We were told they will most likely want at least an evaluation by an educator, since there was no educator present at today’s evaluation. Whether the school department wants OT, PT, and speech evals is up in the air. We should be notified about 6 weeks before Clare’s third birthday when her evaluation with the school’s team will be. Then there will be classroom placement, IEP writing, and more. We are at 10 weeks and counting until Clare starts preschool. A date that seemed so far in the future is now looming closer and closer.

Monday, January 07, 2008

Old Man Winter

We have already been hit hard this winter with snow, snow, and more snow. (Snowiest December on record for over 100 years and still coming.) I love it. I don't mind the freezing cold mornings, bundling kids in layers upon layers, navigating our badly-plowed road (it may be a different story come March, though!!). Jamie loves the snow. He treks out every chance he can get. Unfortunately, it is not as often as he would like since neither Clare nor Simon want to be out in the snow. But we have gotten a few good days of snow play. I even got the chance to snow blow all by myself during one huge storm while Shawn was gone for a couple days! (I am not usually allowed to touch the toys... I mean tools.)

We are settling into our winter, post-Christmas life. Clare has (and had) a round of doctor's appointments and evaluations coming up - orthopedic, neurology, feeding team, Early Intervention evaluation, preschool evaluation, lung scan, and, of course, the ever-present cardiology and echo (but we're still a few weeks away from that one). More updates as we check the list off one by one!

Clare had her "annual" eye doctor appointment before Christmas. It it is supposed to be annual, but the trauma of experiencing her first appointment when she was just a few months old was enough for me to keep pushing it back and pushing it back. (Trauma for both mommy and Clare - as in inserting a speculum to keep Clare's eyes open.) Finally, after being questioned by almost every doctor and her therapists whether Clare had her eyes checked recently, I realized that I could not hide any longer. I am pleased to say that 1) no speculum required this time and 2) no problems with Clare's visual acuity, no drift, no strabismus, nothing requiring glasses. (Although many of Clare's WS-buddies wear glasses and are adorable, I have to think it is also a pain in the butt. I have enough pains in that area.) However, both Clare's OT and PT noted that Clare has problems with visual perception. We are discussing the option of having her evaluated by an opthamologist who specializes in this and looking into vision therapy. Also, since Clare does have some vestibular issues and trouble having her eyes follow and focus on objects without moving her head, we may try an astronaut spinning program with her as well. There is a whole bunch of technical mumbo jumbo to go along with this, but I am running on empty today, so I am not going into it all. Let's just say that the fun never ends around here!

While we may be adding doctors and specialists to our busy life, we are also trying to knock them off one-by-one. Clare was officially discharged from her neurologist last month. He does not see any neurological issues coming into play with Clare at this time. So now he has seen her, knows her, tracked her baseline, and if anything comes up in the future, we can take it from there. We had Clare's orthopedic appointment as well. It is also official that there will be no more AFO's (which is good since they have been sitting in the living room closet untouched for about four months now!). Clare does roll in on her ankles when walking; other than that, she is very steady on her own and does not need any special shoes, supports, or braces. Clare is doing great walking indoors. Outside is still very iffy. I have not really pushed her on the outside portion with winter. Ice, snow, slush, puddles - just not fun learning conditions! Come spring and summer, we're going to concentrate on Clare becoming more comfortable walking outside. The orthopedist did take a look at Clare's left foot because of her toes and stated she does indeed have a clawed toe. (Her toe right next to the big toe curls down and the big toe and third toe lap right over it.) Her first joint is very stiff there and her toe muscle seems weak. Right now, it is not impeding her walking and is not causing any pain or discomfort (or at least Clare does not complain about it). It will have to be surgically-fixed in the future if it becomes a problem, but for now, the doctor is going to keep an eye on it. Clare does not need to return to orthopedics for a year.

As much as I love the Christmas season, I do look forward to getting back into our routine. Back to preschool drop-offs and pick-ups, swim classes (of which Simon has joined the ranks), and all the appointments. Plus we're gearing up for the Ninja Turtle birthday party some nameless-almost five-year old is having in a few weeks!