We are slowly starting to see glimpses of Noah again, as he is spending more time awake and starting to sit up for short periods of time. Fevers are still persisting, so a gallium scan is scheduled for tomorrow morning. Praying this will give us an answer as to what is going on. His blood cultures continue to come back negative and his platelets have returned to normal. GJ feeds are going well, except for an excessive amount of secretions. He is back to his full feeds, so now we are trying to push his gut further to get in the calories he was taking by the lipids in his line. In the next day or two we will try adding some fat to his feeds (what type of fat is still us for debate). Overall, we are heading in the right direction, but still lots of work to be done.
Leaning on our Heavenly Father for patience and daily strength.
On September 21/05 we were blessed with a beautiful son. Born with a chromosome 12q deletion (q15q21.2), the challenges were many...cleft lip/palate, complex feeding issues, developmental delays, failure to thrive, multiple infections, blood clots, asthma, sleep apnea, GI and pulmonary bleeds, TPN dependency and kidney issues. Noah embraced life and taught us how to love. On July 29/09, Noah's journey ended, leaving us on a new journey...this journey on the pathway of grief...
About Me
- Nichole
- I am mom to 3 beautiful children. I also work casual as a nurse. Our life is a crazy one, and nothing like we ever expected it would be. Yet, this journey has changed me and the way I view others. And it has helped us slow down and enjoy the most precious things in life. I wouldn't trade those lessons for anything.
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3 comments:
Way to go, Bean! I hope you get some answers from the tests that will happen. Praying that whatever fats you add to Noah's feed will be tolerated well. As always...praying!
I'm glad you're starting to see bits of Noah again. I'm praying for peace as you advocate and wait and pray for your sweet little boy.
Ramona
It's great to hear some good news. We've been praying for you guys. And what a blessing to see some of the "real" Noah :)
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