We started adding Polycose to his tube feed on Wednesday. He is still losing weight and so we continue to try and stuff more calories into our boy. He had a bad night of diarrhea Wednesday night, and was on the dry side Thursday morning, so we had to back off. 1 Tbsp of Polycose in his 24hr feed seems to be tolerable today. The goal is 4 Tbsp, so I will try increasing every couple of days. Bloodwork yesterday looked ok, alot of "borderline" stuff, but no major worries at the present. Still talk about surgery, but no definate plans. We do know that we need to get a bit of weight back on him if he is to go to the OR again.
With Christmas approaching, I'm nervous as to how the timing will play out, however most of the gifts are now bought, the tree is up and so I'm feeling better about things. Just getting anxious to hear something from our surgeon as I hate feeling "in limbo".
Some hospital pictures taken by my sister, Erin back in November, along with the first picture (love having a photographer in the family!!) Hope you don't mind I stole these from your blog...
Some good news...Noah has officially been granted a wish from the Children's Wish Foundation of Canada! Waiting to hear more...
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6 comments:
Woohoo on the WISH - that should be so awesome for your family.
Love you, Bean!
Yeah to the wish1!!!!!! How fun for your family and for Noah!!!
i have been meaning to tell you, there is a family in Cassidy's class that just got home from that place in Florida, there youngest had her wish granted(i got to talking to the dad one day after school)
they said it was amazing but the kids were going through some withdrawal!
When Kristin had her cancer, she was granted a wish through the Westman Dreams for Kids, in Brandon. She wanted to go to Florida to Disney World. We stayed at 'Give Kids the World', a wonderful place. We had free passes each day to so many places, we couldn't use them all. We went to Sea World, Busch Gardens, Universal Studios, etc etc. She had a great time...we all did.
Erin, that is probably the same place that the family in Cassidy's class went to.
http://www.gktw.org/aboutUs.asp?a=1
Brenda
We are thinking about you guys, and praying that Noah would beable to tolerate more food than that. Does he only get a Tbsp. of food in 24 hours. Poor little bean. Praying God;s peace for all of you. love mom
So exciting to hear about the WISH, I know it will be great for your family.
I'm so full of prayers for Noah, and that he'll tolerate his 'food'. His smiles are beautiful.
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