Bloggy thoughts.
4:38 PM Edit This 3 Comments »
I've been meaning to add to my blog for weeks now. I love reading other people's but don't take the time to write in mine. I do find it therapeutic . I am so excited about the upcoming WS fundraiser. It will be nice to be out without the kids! It will also be nice to be surrounded by people who support the WSA and families with WS. We were lucky enough to meet five other families from New York this weekend. Rob and Jill had a few families over. Aiden had two little friends. They were only six months older then him. We also met Susan (an adult with WS) who will be singing at the fundraiser. I really enjoyed talking with her and her mom. It really did feel like one big family. I haven't been to a convention yet so this was the largest group of people with WS I have met. Rob and Jill had a delicious lunch and all the kids and siblings had fun. Aiden continues to plug along with all of his therapies. He has started to self feed alot more recently and today was chattering non stop. It was funny how much he had to say ( most of which no one could understand but who cares). We saw an endocrinologist last week. I want to make sure someone is following his growth or lack there of. The endo was not worried and said to come back in six months. I'm not in any kind of rush to start hormone shots daily so I was happy with the visit. The Dr. even made me laugh when he called Aiden " a giant amoungst the short stature kids". What he meant was that he does not consider a toddler to be of short stature unless he is under the 3rd percentile and our GIANT is in the 4th percentile! We love the little guy none the less. It's kind of nice still being able to carry him and snuggle with him the way we do. His small size has advantages. I get to have my baby alot longer than I remember my daughter being.
Mostly these days are happy. the only time I feel sad is when we are surrounded by his peers and the size and behavior differences are so clear. Breaks my heart. We still have a long journey ahead. Early Intervention has us thinking about Pre -schools already. HIs IEP is up in June. I know I am not ready to leave him alone for any length of time. Luckily his birthday is in October so we can stay in EI if I choose until December. Gives me almost a year which seems like a reasonable amount of time.
We are all anxiously awaiting Autumn's first baby tooth to fall out. It is dangling by a thread but we don't have to nerve to pull it. My first baby is all grown up. This tooth has been loose for months and now it's a matter of days. She asked me today why the tooth fairy needs HER tooth. Well I have no clue??!! I just said if you want money from her you have to leave her your tooth. I guess I should google tooth fairy and read up about her. I'm sure more questions will follow.
3 comments:
I love to hear that you are getting to meet more families. It always makes me feel so comfortable, even though they are virutally strangers you just seem to have an instant bond.
I don't know that anwser I would have given about the tooth fairy either.
Ok that is one smart little chick, most of our kids just take what we say and give up the darn thing! Better watch out she may want to counter offer:)
I always feel excitement in the air when WS families get together. It's pretty rare for us, and I always feel so RELAXED when we finally can spend some time with others in the same boat.
Seeing how different other children are from yours is difficult. I go through periods of time when it doesn't bother me much now anymore...and then once in a while it hurts very deeply. But it has gotten a lot better. Hang in there.
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