I am finding it difficult these days to answer the question "How is Noah doing?" Well, we are home, yes, but I feel as if we are just barely keeping our head above water at this point. The secretions have become progressively worse, despite increasing the glyco dose, but I am unsure whether this is cold related or feed related??? It's a full time job just getting rid of those constant secretions!!
The big concern right now though is this downward spiral we are on with his weight. Today is another loss at 6.37Kg (exactly 14lbs), so he is back to the weight he was a year ago. His body temperature runs low these days, likely because he has NO fat to keep him warm. And the absolutely FRIGID temperatures we have right now doesn't help. We dress him in layers and keep him in front of our fireplace most of the day. His energy level is not like it used to be and he spends much of his day lying on the floor (we are wearing out his Baby Noah DVD), with some energy bursts here and there. But he is not constantly on the go as he was this summer. I am worried that he has no reserve and we could get into very serious trouble if he continues to lose. Wednesday we have TPN clinic to reassess things.
Praying we can stay out for the holidays...
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5 comments:
Sending my Bean warm hugs. Bean - we pray for you daily; you and your family are never far from our thoughts. Praying you'll stay home for the holidays. Nichole & Brad - Praying for you guys too!
When I saw him last I didn't' think he could loose anymore weight. Sure am praying for all of you and especially that you'll be home for Christmas as a family.
Emmy
Thank you for the updates. It helps to have some direction for prayers. Time at home is a blessing, but the pressure of uncertainty for Noah must be hard. I'm thinking of you Nichole.
Oh Noah. We noticed how cold you were the other day. We are praying for you and mom and dad too. I am sure you will need lots of direction in the next while. We are praying that God would give you his peace, and hopefully he can get rid of his cold. we love you all. Love granny
i think Noah will love his christmas present from Cassidy!
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