Updates and Pictures

Cheli On Wednesday, April 15, 2009

Well that last 2 weeks have been insanely busy for us. River went last tuesday and was evaluated at a Sensory Integration Clinic. He has Sensory Integration Disorder/ Sensory Processing Disorder. He is pretty far behind in some areas due to this condition and as such will be recieving OT and ST through the clinic twice a week (Tuesday and Thursday) for coping skills and to help him developmentally. This about a boy who didn't qualify for Early Steps because he was advanced. LOL. We took the boys sometime a few weeks ago (March 31st I think) to get their pictures done.. I'll post some of our favorites at the bottom of this post.

Yesterday Journey went to the GI doc for another follow up. The doctor doesn't think his symptoms are conducive of his original diagnosis of GERD but he DOES feel they are very in sync with Noonan Syndrome. Surprise Surprise. He said that he's so sure that he's over the GERD issues that he's comfortable taking him off of Zegrid for the time being and seeing how he does with that. He asked if Journey had been evaluated through Early Steps yet and I told him yes and about how he will be recieving feeding and speech therapy starting next week once a week in our home. He said in his opinion he felt that Journey could benefit from more than just once a week and urged us to get a 2nd opinion. He also said he felt that he could benefit from some PT as well. Told us to ask our pediatrician for a referral. He is now 23 lbs even and 28.6 inches. He has officially fallen off the growth chart for height. In fact even on the adjusted charts for Noonan Kids he is only in the 25th percentile for height. But at least he's on that chart. Weight wise.. we're thrilled. Guess that's what happens when you drink 30 oz of milk a day.

So then today we took Journey to the pediatrician because he's had some ROUGH ROUGH nights the last 3 nights. Up every hour from 10pm until 3am tossing and turning through out the night etc. Well he has the start of an ear infection in his right ear but his left ear looks good. So she gave us an antibiotic. BLAH. Then she chewed me out because his shots aren't up to date. BLAH BLAH. I asked her for the referral to the evaluation center for a 2nd opinion and she wouldn't give it to us. *sigh* Said we need to either get it from the GI doc or we need to get the GI doc to fax them a letter stating that he wants him evaluated for more therapy sessions. Because I have time to jump through their hoops. Whatever. I think we're going to talk with Early Steps and see if they can recommend a doctor in our town who has experience with special needs kiddos because I'm becomming less and less impressed with our current dr's office.

OK so here are the pictures as promised: