Wednesday, June 28, 2006

Makin' Strides

Today Brady had his Early Intervention appointment with his PT Lisa. We love her! She is wonderful and even though we're pretty sure Brady plays possum with her when she comes, I know he'll grow to love her too. "Play possum?" you ask. Well, when she is stretching Brady's limbs he cries for her to hold him, then acts like he's falling asleep, so she stops so he can settle down. He watches her out of half-opened slits, thinking she will wait til he falls asleep to continue... however he doesn't fall asleep! Smart little cookie, that one. The temper comes from Tom's side, the ingenuity comes from mine. :)

Anywho, we're all very pleased with Brady Bunch, as I've been known to call him. (Yes, I am and will always be a Brady Bunch fanatic. My brother and I used to race to see who can name the episode first when the show would start. My mother is convinced Brady is named for the show as well. I'll never tell.)

Back on track, Brady is doing a much better job sitting and catching himself when he leans over, plus he settles himself down much better now. He is also doing better transferring toys, and particularly loves his key ring set. (Is it a guy thing -- just can't wait to drive!) Next week we're going to start seeing Lisa twice a week, as she feels he's on the cusp of breaking through and doing some great stuff. Plus we also see Vicki, the Speech Pathologist once a week, so we're going to see both of them on at least one day. Since we're not doing weight checks every other week anymore (cross your fingers that doesn't change!) I really don't mind the appointments. Maybe "mind" is the wrong word-- I know people get burnt out of doctor appointments, but I'm not there yet. I just keep thinking of the big picture. My girlfriend who is a nurse and Brady's godmother said just by getting Brady in Early Intervention as early as we did probably changed his quality of life.

I hate to even type it here because I might jinx things... but he's actually getting on some type of schedule, eating- and sleeping-wise. I'll keep you updated on that- maybe the schedule will end tomorrow, who knows. Because I had to feed him whenever he wanted, more or less, it was hard to determine bedtime and breakfast and naptime, etc. Now that we are having cereal with fruit and vegetables, we are having more "meals". Cross your fingers!

Tuesday, June 27, 2006

Getting bigger....

All right, I am officially starting this blog! I was hesitant to do this, because I thought I would be all excited and say I'll write every day, but then lose interest. However, I have been reading a lot of blogs of parents who have kids with Williams Syndrome and it is such a great therapeutic rush for me. I read what the others are going through, some mirroring my life as well, and hopefully this blog will be a help to someone else too.

I have a few friends who have had babies after I had Brady eight months ago. Their kids have all surpassed him in weight (except for the one born three weeks ago... and he'll probably do that within the month), some have graduated passed him in eating abilities also, as well as other fine and gross motor skills. The funny thing is that... it really doesn't bother me. I thought it would. Maybe it does on some level... but I am at that place in my life right now that I am happy with the progress Brady has made so far, and continues to every day.

When my eight-year-old Michael was a baby, I used to be that mother who checked the What to Expect book for each month's progress and marvel at his abilities to be ahead of the book in every chapter. My girlfriend and I would jokingly talk about how advanced our children were and how they were learning Spanish at three months of age. How ironic now that I don't even open that book with Brady. The first month I checked it, by the second month we had a strong suspicion he had William's, so I checked the book to see how delayed he was. After that I didn't open it because I didn't want to know how delayed he was. At some point that changed. Over the past few months I haven't opened it because I finally realized it doesn't matter how delayed he is... Brady is who he is. He wouldn't be Brady if he didn't have William's. I marvel at his accomplishments now, even if in other children they happened months ago.

I do have one wish --- just a little smile. And the one he has in his sleep doesn't count!

I do have people stop me in the stores and ask how old he is (EVERYONE stops because he is so adorable!). I answer and wait for the expected, "Wow, he's so tiny! My son-daughter-grandchild-nephew-neighbor-third cousin's son twice removed- child was 220 pounds when he/she was that age!" I smile and just respond, "Yeah, but he's a cutie so we're keeping him." I have learned not to be annoyed --they aren't doing it on purpose-- and just move along.

I know I'll probably hit this again when he's at another learning level, maybe trying to walk, talk, learn the alphabet... and hopefully I will remember that Brady will make his acomplishments when he is ready. And I will be there with the camera.

Sunday, June 25, 2006

Everyone loves The Wiggles

Brady received a Wiggles video for Easter (still like videos rather than DVDs... although my husband would disagree) and he is as enthralled with the colorful crazy men as I am. My older son was able to cash in on the Wiggle hoopla right before he got too old for it, but we still have a soft spot for Fruit Salad and my all-time favorite, Quack Quack Quack, Cock-a-doodle-doo. I have been known to break out in full-singing mode when we hear this.

Thursday, June 22, 2006

Finally... a brother!!

Here are Michael and Brady when Brady was just a few days old. Michael was so excited to be a big brother - and still is to this day, eight months later. I thought the newness would wear off after Christmas. Glad I was wrong about that!

In this picture, Brady is three days old. He was already diagnosed with a heart murmur, already had problems breathing probably due to fluid in his lungs, had a HUGE cephalhematoma - a giant bump on his noggin, and was in the beginning of what would be jaundice. We didn't know what was to come - a failed hearing test (which he later passed no problem), bilateral inguinal hernias (which he had surgery for in Dec.), slow weight gain (which we are FINALLY doing better on now!), diagnoses of pulmonary and aortic stenosises (which we just had a positive report on last week) an opthamologist appointment for a lazy eye (this July) and of course the diagnosis of Williams Syndrome, which ties everything together with a neat little bow.

I suppose it's the optimistic side of me that put all the positives in parantheses after all the "difficulties". It's just the way I think. Yes, there is truly some bad stuff out there. My life hasn't exactly gone according to my "plan". I certainly didn't expect there to be a 7-year difference between my children. I certainly didn't expect to give birth to a child who has special needs. But... how sad can I get? I DO have both of my children, who make me laugh and warm my heart... I DO have Brady who may have special needs one day, but he's HERE. We have Early Intervention every week, and see the doctor for his weight checks every two weeks, and visit this new doctor here and there.... but we also go to Michael's school where everyone has fallen in love with him; my family and I revel in his new accomplishments like it's a trip to Disney World; a flurry of phone calls were made when he gained six ounces in 12 days. How can I be sad?