Sunday, September 6, 2009

Post # 1 - Noah

Since my last posting a few weeks ago, we have been to St Mary's center for Children in Evansville for the evaluation with their feeding team. We met with the physcologist, OT, speech, and dietician. They did a complete history and then left us in the room alone with Noah to see if he would eat anything while they watched on camera. Suprisingly we were able to get him to nibble at a few things allowing them to get a good idea of his typical meal time (if that's what you can call it). A few observations they made, the first being that he is not actually chewing. He is mashing once or twice and then swallowing or spitting his food back out. He has very low muscle tone in his face and his jaw line is weak. They also noted his extreme anxiety issues and feel this could be a major issue with his progress in the program, but hope to be able to work on it. The Dr explained that children that have been as sick as Noah have no internal drive to eat. They lack the feeling of hunger. We can recognize that familiar feeling when our blood sugar begins to drop and we need food. Noah on the other hand, does not. His "bites and sips" diet as we call it, is only because it seems interesting or because everyone else is doing it. They said that after he is completely weaned of his tube feeds, it could take up to an entire year for the hunger mechanism to kick in. When I inquired as to his goals for the program at the end of 8 weeks they said that first off we have to work on getting him to a healthy weight. Aggreed. Second, they would consider the program a success if he was only needing tube feeds for 25% of his diet. They said he would need strict follow up therapy back at home and a supplemental 2 week program a year from now. This was a hard pill to swallow. My expectations were a bit higher than this, but sitting back looking at it now, 25% is leaps and bounds above 100%. Our official start date for the program as of right now is October 26th. It will be here before we know it!
For now, he is still tolerating the g-feeds with only and occasional episode of wretching. We have slowly been switching him over to a 45 cal formula and even the little bit of weight he has put on has made a huge difference. He looks so much better than he did a few weeks ago.
We met with his pulmonologist this week and he also got a flu shot. The pulmonologist was not pleased with how sick he has been this summer and advised that we put Noah back into our usual winter quarentine. Basically we will be avoiding any public places, any gatherings with lots of people, and other children. The Dr wasn't actually too worried about the feeding program as it is almost 6 hours south of here and the climate will be milder. He asked that we use precautionary measures down there as well. Since his lungs have not been in the best shape, he has asked that we increase the inhaled steroids to twice a day for the next three months. Obviously when H1N1 comes to our area, Noah will be a prime canidate for the vaccine, and we will be looking into that when the time comes. We are unsure as to whether or not to vaccinate and will discuss with his pediatrian and pulmonologist again at that time.
Aside from the feeding issues, Noah is growing up right before my eyes. His personality shines and he makes us laugh everyday. He is currently full of mosquito bites and has two skinned knees - what a blessing. This to me just shows that he is strong enough to be running around outside like any other two year old!

3 comments:

Weylin and Tori said...

Skinned knees are such a blessing, aren't they?! I can't believe how grown up Noah looks in the picture on the right side! When did he sprout? We are thinking of your family and missing you guys! Praying that the feeding clinic is the answer for Noah!

Love,
The Douglas family

bikurgurl said...

I understand the frustration, we went through the feeding team scenario too, and am thankful that they have specific targets they expect to hit thereby setting your expectations properly.

We pray for Noah's healing and continued improvements!

Love,

Kelly, Jeff, and the Boys

Seth CDH survivor said...

glad to hear that he is doing good

love Alison And family