A life less lived

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.

Who knew that two adorable little kids could turn into coughing oozing mucus machines??

There was a time not so long ago when New Year's Eve was my favorite holiday. My parents always had plans on New Years Eve. As a young child I remember spending the night at my grandparents home so my parents could go out. I started celebrating with my friends at sixteen and never looked back. Christmas was ok, hannuaka too, halloween was only good if there was a party and even then it lost its luster when I became too old to trick or treat. Never cared much for valentine's day either. New Years Eve was the night I looked forward to all year. Good friends, good food, lots of drinks and bar hopping in Manhattan. Music was always involved, what band was playing where. Fast forward to parent hood. My last New Years out was five years ago. I've been OK with it up until this year. The kids are both sick. I mean SICK. Coughing, fever,dripping nose, pink eye, (with all the glorious eye boogies) vomit and let us not forget to mention the perforated bleeding ear, ear infection that decided to join in on the fun today. My poor man always has to up the anti. At the doctors office his ear started bleeding. Needless to say I held it together in the office but I am seriously freaked out. They are on all types of medication and now I worry about this being a reoccurring thing with Aiden. One more problem to add to the list all before he is even two and a half years old. So my day today after the doctor was wiping noses, cleaning eye boogies and trying to force fluids into both the ozzing mucus factories. I forgot it was New Years' Eve until I was trying to figure out what to do about dinner! Now the kids are in bed (coughing) my plans for tonight are to medicate the kiddies in another two hours and probably sleep on the couch. They had me up so many times last night it almost doesn't pay to go upstairs to bed.  I really need a vacation! Maybe when this all blows over my husband will take me away somewhere for a weekend.( if you are reading this Mike hint..hint..Mohegan Sun) My birthday is coming up and that would make a great gift.

I can't believe how long it's been since I've blogged. I always have time to peek in on my WS friends blogs but never get around to updating mine. I always have time for others and rarely take the time for myself. I was supposed to go out tonight for some grown up time with a girlfriend but she wasn't feeling well. I have been looking forward to it for weeks. So here I am 8pm on a Saturday night, at home about to put my pajamas on! I need a life seriously.

Stephanie and Sportaceus from Lazy Town

The Heart of a Child

Aiden and I just returned from our Mecca to Kentucky. We met with Dr. Mervis and Dr. Morris. It was our first time meeting Dr. Morris. She was extremely thorough and gave us some good advice. She is concerned with his size (small even for a WS kid) and his low tone. Dr. Mervis suggested more OT to work on the low tone and fine motor issues. We even got to meet a few other kids. There was Hannah (teenager) and a small fry like Aiden named Ella.  The other kids I saw in passing. Ella and Aiden shared a snack and Aiden tried to steal her crayons. Sorry I forgot her parents names but it was nice meeting you. We are so busy there for two days that there wasn't much time to talk with you .  The traveling was the hardest part. One hour drive to airport ,two hour flight, taxi to motel and shuttle van to the university. I bought a great airplane seat belt harness for kids. It was a life safer , two minutes into the flight and Aiden wanted to "go up". The harness kept him seated and then it was just up to me to keep him entertained. I went through every toy I pack, every snack and I even stooped to barf bag puppets. We survived the flights with minimal crankiness.