Hey folks, we've got some things coming up for which I would really love to have your prayers.
Today James has another appointment with our neurologist. Last time we saw Dr. J he was very impressed with James. My hope is that he continues to find James impressive. Our ultimate goal with neurology is another EEG that shows normal brain activity and weening James off the phenobarbitol (siezure medicine).
On Feb 24th James will have another cookie swallow. At this point we will re-evaluate the thickness of James' bottles to see if he can go to a thinner consistency. The perk of going thinner will be using my stored breastmilk in his bottles. We will also introduce spoon feeding to him. Hopefully some good fruits, veggies, and breastmilk will relieve some of his constipation issues.
During a recent phone conversation with our feeding therapist I learned that James' first cookie swallow was the worst she had ever seen in six years of working at the Children's Hospital. She asked if she could show his film to nurses, doctors, and others during training as a clear example of "penetration" - when the food goes into the windpipe. (not a record we want, James!) But I also learned that just because he can't take a bottle of regular liquid doesn't mean he'll never be able to drink water. It seems that sucking, breathing, swallowing is what is so hard, but if James is just drinking (take away the sucking) then he'll probably be able to eat and drink safely and normally. Probably. We'll get a clue about that with this upcoming cookie swallow.
Lastly, we are quickly approaching the three month mark for not using James' button. I have made an appointment with the gi doctor's office for mid March. Hopefully we will be removing that sucker soon!
So in short, please pray for:
- a good visit with Dr. J today, the result of a normal, healthy, miraculously healed brain
- a good cookie swallow on the 24th, meaning James actually takes a 4 oz bottle during it and we see that he can tolerate thinner liquids and spoon feedings safely
- that everything will happen as it should so we can get the button removed in March
Thanks for your prayers and support!
Praying for James, and for you all. I have loved following James Fulton's journey. God Bless, EReplyDelete
I'll continue to pray for James. Couldn't take my eyes off him on Friday night, he's a cutie! Dr. J was our Neuro doctor, he is a living saint!!! I am so glad that he is James' doctor, he was our rock and we trusted and love him so much. He is a great Catholic doctor, you're blessed to be in his care! Tell him hello from us!ReplyDelete
Remembering you all in my prayers.ReplyDelete
Will be praying!!!ReplyDelete