Sunday, May 15, 2011

Random updates....

All is quiet and well, which is always a good thing! Despite a small respiratory illness, Noah has been pretty healthy over the last month! We are cautiously optimistic that the c-diff and colitis issues are a thing of the past. He continues to do well in school and we had his annual IEP meeting a few weeks ago. He has displayed good growth over the school year despite his hospitalizations. We are continually amazed at the changes in him since he's been in this preschool program! His teacher still has some concerns in a few areas, one being his gross motor skills. He has very little core strength and very low muscle tone. They are recommending he start PT again and will he will most likely receive PT weekly during the next school year. They have also been observing that learning is very difficult for him. He has a very hard time with memorization, colors, number, letters, etc. Learning in general is a struggle. Based on these and other issues, he will continue on in the special needs program next school year and not mainstream into a community preschool. We love the program and strongly feel that the one-on-one learning environment is good for him. Although we would have loved to hear that he was ready to be mainstreamed, we are confidant this is the best decision for him.
In terms of feeding, he is actually doing awesome. The Neurontin continues to manage his visceral pain and as a result, his oral intake stays pretty steady (minus times of illness). Despite his efforts, he still isn't gaining any weight. Over the past year, he has slowly been backing down the growth chart. We've manged to get back what he lost with the past hospitalizations, but he is still on a truckload of calories (from the g-tube and food boosting), yet gaining nothing. His surgeon isn't sure if it's an absorption issue or metabolism issue. We will be heading up to U of M for a little CDH "maintenance" in the next few weeks and hope to meet with the dietitians to discuss some any ideas they might have. He is still on 10 hours of night time feeds and small tube feeds during the day and averages about 200 cal orally per meal.
Zane and Elliot are doing great! Zane's baseball team is unstoppable this year and he is playing great! He is still doing awesome in school and already anxious for middle school next year (gulp). He asked me tonight if he could start wearing cologne?? This from the boy who battles over taking a shower? I am wondering why the change, but something tells me it isn't for Mom...I am so not ready for this. Elliot doesn't stop from the second he wakes up till the second he goes to bed. He is always moving, talking (yelling), eating, and mostly getting into trouble. He has mastered the art of getting himself out of trouble with spontaneous displays of affection and dropping a few "I luff you's" when he knows he's done something wrong. They learn so early don't they?
That's about it from us! I never mind it boring!! Thanks for checking in on us!

1 comment:

bikurgurl said...

So happy to hear that the going keeps going! :) We love you all and are wishing you the best of luck as Zane starts tween-dom ;) Yikes! How did he grow up so quickly ?!?

Love, Kelly and the Boys