We had a great weekend with all of the boys. Brian and Elliot came down on Friday and left, along with Zane, this afternoon....:( We were able to get out and about alot this weekend I think the boys all had a great time. I just hate it when they go!
I met with Dr Clawson on Friday and we talked alot about what they have been seeing and thinking since he has been there. She noticed a big difference in the fact that he does actually WANT to eat. He no longer needs the positive reinforcement between bites and never refuses. His main issues are endurance, volume, and his ever-present gut pain. He can only comfortably eat 4 oz before the pain starts, but again, this is a small improvement from last year. He gets soooo tired while chewing that he will actually fall asleep. They also think his small lung reserve has a lot to do with this. I have never actually thought about how much this would affect him from a feeding aspect. She said many CDH'ers struggle with this. Noah is just going to need lots of time and practice. She agreed that it was very unfortunate that Dr Hyman's approach in New Orleans didn't have more of a positive outcome, but she does agree that the g-j tube is best for him, for now. It will be a long time off before he is ready for a tube feed wean. There are only so many calories that you can fit into a 4oz meal. He still has the edema issues when he consumes the higher calorie formulas or juices, but they are experimenting with some different things for supplementation. We are going through his pallet of foods to find the ones that he does the best with as far as chewing and eliminating those that he just isn't ready for. We are hoping to go home on meals that consist of 2 soft chewable foods and one puree along with a drink. The more he works, the more weight he is losing, so we are trying to consider that as well and keep an eye on the weight gain. We will continue to do his chewing and facial exercises before each meal.
We have met some fantastic people both here at the RMD house as well as the feeding clinic. I was talking with a woman that was serving breakfast here this morning at the house, only to discover she also had a little boy born with a CDH and he and Noah are only a week apart in age! We are going to try to get our boys together one day this week.
Thanks for checking in on Noah and I hope you had a great weekend!!
5 comments:
It is so promising that Noah actually WANTS to eat! Big hooray for that! Praying that things continue to go well and Noah is able to progress!
Thanks so much for the phone call last week! It truly meant so much! I miss you friend!
Love,
The Douglas'
I'm so happy to hear that Noah is making great progress!! And glad this feeding clinic is really helping him! Praying for continued progress!
Information is power! Progress, albeit slow, is still progress :) I thank God that He gave Noah to such wonderfully patient parents who are able to care for him so well! :) We love you all and continue to keep you all in our prayers!
It's GREAT that Noah WANTS to eat...that's HUGE! Sad that he works so incredibly hard to do so. I know that you've probably tried virtually everything and forgive me for even saying so if you've tried this, but since he does have such a strong desire to eat, would it be beneficial to put him on O2 while eating so that he doesn't burn those calories from his intake that he so desperately needs? We've done this on and off with Jaime, and it has helped. Just a thought...again sorry if I'm being redundant!
We just started adding Boost Kid Essentials to Jaime's Pedisure to boost the calories. He, too won't tolerate all that much. He won't eat but bites here and there....some days are better than others.
Wishing you much luck and success! We continue to keep all of you in our thoughts and prayers! Hugs to all! :)
Love the pics! :) Praying for you all and so glad Noah has great people working with him!! :) Sounds like he is making some progress. He is an amazing kid and has one AMAZING momma too! :) Well I guess his brothers and Dad are pretty wonderful too! :) Needless to say HE is LOVED! :)
Laura Leichty
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