Its a party!!!!

Well, again, I know its been awhile! I truely have been busy though. Since my last post, Lucas is now on a 24hr feed through his feeding tube. We finally went to have a 2nd opinion with Neurosurgery at Boston Childrens Hospital and found out that his Chairi Malformation is worse then what we were originally informed. His cerebellum is pushing into his C2 so surgery is required. The Dr there, Dr Madsen, also feels that Lucas should be seen by the Williams Syndrome Clinic people sooner then January, and is having his assistant work on this. He now weighs 18.7lbs and is growing like a weed. He also had 2 hearing tests that he failed, however, I personally think its because of the fact that he was to curious looking at the women doing the test, then the actual test itself. Because he's failed though, we now need to go have a sedated hearing test done. I'm currently fighting with the insurance company to have a sleeping wedge appoved and paid for so Lucas dosen't have to sleep in his bouncy anymore, and I'm waiting to hear there determination. We were back to Childrens Hospital today for a urodynamics study to make sure that his muscles are working in his bladder area, and sofar, that has been the worst experience EVER!!!! Lucas cried the entire time, and I mean cry, he never once stopped crying for more then 10 seconds the entire test. My mom came with me and I think she might have cried almost as much. I think I would have been the same, but I had to be strong for Lucas.

This past Saturday, we had Dylan's 4th birthday party, it was a blast, we had water balloon fights, and a pinata and ice cream. Dylan got everything he asked for including a Leapster handheld game and the Leapfrog Tag pen. And he also got a shaker MP3 player so now I don't need to listen to his music in the car anymore, life is good!!!! During the water balloon fight, I think the adults had more fun, then the kids did. We were throwing each other in the kiddie pool and throwing the balloons at each other, of course my little man was all about protecting his mom, he kept telling me to go to the camper were its safe until he tells me to get out, it was so cute. I can't believe my "little dill pickle" is 4. I seems like just yesterday I was bringing him home from the hospital in his little doggy outfit. Boy how times have changed.

Well, I've also had to change nutritionists, I think its important for any medical professionals that see Lucas realize that he has Williams Syndrome, and be OK with it. I think its a shame to waste time and money for a women to come to my house and tell me that my child is malnurished, needs to increase his intake by 14 ounces and refuse to see a William Syndrome growth/height chart because "I only use standard growth/height charts since that is what is provied to me." So we are now seeing a new nutritionist and the swallow study women on Tuesday, and eye appointment on wed, groceries and errands on thursday, and Dylans actual birthday on Friday. Other than that nothing much is happening! I'll post again, when I have a break....... Oh, and I'll also post pics later of Dylans birthday party.