Monday, June 15, 2009

Toronto Day 14

A long day at the hospital today, with very little happening. Genetics came by to do an assessment and they have some plans of further testing that they would like to do. They also did another literature search and found a new case of 12q(15-21.2) deletion that was reported in 2008. Alot of similarities to Noah...cleft lip/palate, less severe feeding issues than Noah's, small size, developmental delays, and pancreatic insufficiency was reported. So they are recommending testing Noah's pancreatic enzymes to see if this could be an issue for Noah as well (pancreatic insufficiency causes issues with the breakdown of fat...this is something that has never been completely ruled out for Noah).

Tomorrow we are going to start playing with some feeds. We are down to 12 hours on the TPN (just to clarify, Noah is still getting the same amount of TPN that he was before, we just run it at a higher rate and squish it into 12 hours). He is acting quite thirsty (sucking on everything) by the end of his 12 hours off, so we did some bloodwork tonight to check his kidney function and make sure he's not getting too dry without fluids for so long. We won't have those results until tomorrow. Noah has actually lost a bit of weight since we got here, likely because the team decreased the glucose in his TPN, as they don't like to run such high amounts of glucose. We are now slowly increasing the lipids (fat portion) of the TPN instead, but so far no weight gain. So more tweaking still needs to be done.

Disney came to visit today and brought each child a stuffed Mickey. With our love of Disney, this was a highlight. Noah loved Minnie Mouse and kept trying to grab her nose. A nice break in the day.

Noah doing some physio with the cute little walker they found for him. He is actually starting to take steps with the walker and is very proud of himself... I've added some pictures from yesterday as well...


nicole said...

So glad that you got a nice break with Disney coming by! Noah looks so happy trying to grab Minnie! Too cute.
Praying for you both and the doctors too!

laura.h said...

It's so neat to see him standing!!
It will be so awesome to see him take steps someday.
The pictures with Minnie are just great.
I never get tired of seeing his smile.
Still praying...