Tuesday, November 3, 2009

Not the best day, but it was bound to happen...

So no parent meeting today, not sure why, but maybe tomorrow..
Noah started the morning with the same routine as yesterday but moved up to 30min intervals in the chair. He did fine with this. He took another oz of very diluted formula in the first session over the course of the 30min. The next session they put a little bit more formula into the mix and he noticed it right away. He was wiping his mouth, making faces, and trying to spit some back out, but still managed to get almost an oz into him again. By the 3rd session, there was a slight mix up and he ended up with full strength formula in his squeeze bottle. This sent him into an all out retching and gagging fit and he cried for every drink the entire 30 min. They had to stop the clock a few times for him to compose himself and we weren't sure why the huge meltdown until they discovered the formula mistake. Dr Clawson said this is even more proof that we can't move to fast on him. Slow is better. So, we were back to the diluted mix the next time around. They have said that he has very poor muscle tone and strength in his mouth and jaw. This means he will have to work up to chewing and it may be a very long time before he is ready. We will be starting with pureed foods and work on texture grading for months afterwards. This explains the sudden refusal of food after a bite or two when he used to take some by mouth, he was simply mashing once or twice and swallowing whole. This is why the Beckman oral excercises are so important and we are doing these as often as possible. He has lost quite a bit of weight since the transition to the specialized formula. It is not as high in calories as the other so I predict we will be trying to move up in volume somewhere. I have already noticed a big improvement in his "bathroom" issues as well as changes in his skin since the beginning of the transition.
We are loving our new ant-free room! It has been a quiet, uneventful evening! From what I here, all is well at home with the boys. Elliot is still congested and snotty, but behaving himself for Daddy and Grandma. Zane had to have a cavity filled this morning but seems to have recovered nicely! Thanks to Pappy for escorting him! I am looking forward to all the boys coming down this weekend!


Jaime's World said...

Hi Carrie,
all things considered, sounds like you are in the right place for Noah! Who knew muscle tone could be low in his mouth, too...at least you know now and what to do about it to improve it!
Glad to hear things are "quiet" at home, that is SOOOO important for peace of mind, I know exactly what you're going through being away from your children. Jared, too, had to get a filling this past week and sealants, too...my mom took him. Seems strange having others do so much "mom" stuff.

Take care of yourselves...continue to celebrate the baby steps! :)
Hugs to all!

bikurgurl said...

No rest for the weary!

Girl, we are praying for you guys....we are praying for healing and for sanity!!

We love you all so very much and are praying for improvements every day in Noah's treatment and your continued strength, faith, and determination to heal Noah! :)

Love, Kelly, Jeff, Xander, and Xaven