Saturday, July 08, 2006

Feeding Clinic Appt

We went to see Dr Rempel on Friday to discuss a new plan for Noah. He seems to be over his virus, but the retching continues through his tube feeds. As far as the lack of growth, the doctor didn't have anything else to offer. Since Noah is getting plenty more calories than he should need and it still hasn't helped, and he is so uncomfortable through his feeds, it looks like he just may not be capable of growing. We decided that having him happy and comfortable is most important to us at this point. So to address all the retching, we are trialing a new formula over the weekend called Vivonex. It is also an elemental amino acid formula, but it is meat based (it is actual baby veal ground up with a multivitamin added, and it smells as lovely as it sounds!). Unfortunately all it is doing is giving Noah diarrhea and the retching is still just as bad. So if no improvement by tomorrow, we will go back to the Neocate. However, we will mix it as a regular .67 kcal formula rather than the concentrated 1.03 kcal we were mixing it to before. Hopefully this will be better tolerated. Unfortunately, of course, he will then be getting less calories than he does now, but it looks like our only option for now. If no formula changes work, we will look at changing his reflux meds and see if that helps.
We also decided it might be helpful to see Endocrinology to have them follow his growth and keep an eye on his hormone levels. And we will have another barium xray done soon to make sure that all looks okay with Noah's fundo as sometimes they can slip causing problems. It's all a puzzle right now and a lot of trial and error but hopefully we can figure out how to make feeding more pleasant for everyone.


Erik, Jamie, Micah & Baby said...

Hey guys - we're still praying for you (and getting excited to see you soon!)

Anonymous said...

We're praying for all of you, that God would encourage you and give you strength. Also, that you would have a wonderful trip out west, and that Noah would do well on the trip. we love you guys,a nd look forward to seeing you next week. love granny

Amanda West said...


I just read Noah's amazing Journey. I found your website on Samuel Mann's webpage. Noah is such an inspiration to me and is a true testimony of God's love and faith to us! My daughter Kira Grace who is due on July 28th has been diagnosed with Thanatophoric Dysplasia like Samuel and not expected to live more than a few hours or days...but i have so much more hope and faith than the doctors! I will keep Noah in my daily prayers and hope to read wonderful miracles about him. God bless you and your family!

Love, Amanda West