Noah spent a few hours off the CPAP today, charming the nurses with his infectious smile. He still works quite hard to breathe while he is off, and tires very very quickly, but the improvements are slow and steady. Xrays show alot of chronic lung changes, so we may have to accept that some of this may be permanent lung changes. Noah's new line is working beautifully and the TPN is helping him gain back some of the weight he lost in the past month at home. It makes me confident that we have made the right decisions for Noah...he has proven that he is not ready to stop fighting either. Sometimes I wonder how many times we can be so lucky (although luck isn't really the right word)...is there a quota of miracles out there?? I certainly hope we haven't used them all up yet...we need an endless supply around here!
Looking forward to a quiet weekend here, and to the end of the holidays. Monday we should be able to put together a plan with everyone to get Noah back to the ward and one step closer to home.
Thank you all for your many prayers and comments. Thank you especially to Kailyn for your comments. I miss you too and can't wait to see you this weekend!
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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6 comments:
HI Nichole - great that Noah is stealing the show with his smiles...can't wait to see one in person! I was hoping to visit tonight (Friday) but Mattea had a low fever all day so I really need to stay away (I would hate to bring in germs). Hopefully I'll be able to come over the weekend. You are in my thoughts and prayers...
Give that Bean a hug from his "auntie" Kim. And I too, think Kailyn's comments on your blog are precious...her love and concern for Noah is so evident. She is one special girl (Josh is special too!).
Hugs...
Wow- God is amazing. I'm praying that you, Nichole, won't get sick or anything at this time either so you can have energy to keep going and keep following as God leads.
Ramona
PS Kailyn made me get teary- what a sweetie
Slow and steady wins the race :)
Keep going Noah. I can't wait to see pics of your Disney trip
Oh that boy! I'm sure he has all the nurses wrapped right around his little finger, doesn't he!
just checking in, hugs to noah, hearing he is doing better makes my day
We are still praying for you guys!! :)
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