We received some good news today. Kai does not have Menkes disease or occipital horn syndrome. This is such a relief! Now we are back to square one...what does Kai have??? They are working on trying to figure this out. Whatever the case is...it is rare. They know that there is something wrong because of his loose skin and his joint issues. Tomorrow they are doing a MRI and x-rays on his arms and legs. This will give them a better look at Kai.
Yesterday Kai had a swallowing evaluation done. The good news is that when he swallows the formula, it goes down the right way. He does good for the first handful of swallows and then after that it becomes really hard for him. It gets to be a lot of work to feed from a bottle. This is something that they will be working with him on for the next handful of days. They will re-evaluate early next week and then go from there. If the bottle feeding does not go well, they may have to do tube feeding through the stomach. Also yesterday they put the harness on Kai to help his hips. I believe the plan is for him to have this harness on for about 3 weeks and then they will look at his hips and see how they are doing. This harness is on him 24/7. He seems to be uncomfortable with it on and I think he may be in a little pain from it. I think he will feel better about it once he gets use to it. Today they put splints on his wrists. They are having them on for 1 hour and then off for 2 hours and again same thing. He doesn't really seem to enjoy them either. It is really hard to not be able to comfort him. I'm not sure exactly when, but they are talking about moving him out of intensive care and moving him to the infant care center ( which is a high level of care, but not as high as intensive care). So Kai just needs to get this feeding down and then he will be able to come home. We are so anxious for the day that Kai gets to come home. I suspect that he will still be in the hospital through next week. Well, until the next update!
Grandma and Kai
Kai in his harness
4 comments:
Hey Levi and Dawn
Just wanted to drop by and say that your family has been in my prayers. Let us know if you need anything.
Hi Guys! We continue to think of you and pray for you ... I am hoping the Dr's are able to unravel this mystery soon, so your beautiful baby can join the family at home. Please call if you need anything at all!!
Kadie, John & Wyatt
Hi Dawn, Levi, Gavin and Jace! It's great to hear that things are moving in the right direction. The little progress that baby Kai makes from day to day is better than no progress at all. It sure does sound like he is a fighter! I am sure that he wants to be home with his family as much as you all want him there. We think about and pray for you daily. Please let us know if there is anything that we can do for you.
Kimberley, Shawn and Liliana Deming
Dawn Levi, Gavin and Jace,
Hello from the McCormacks, We have been thinking of you and check for updates often :), hopefully you will get some answers soon and take Kai home. If you some company in the cities let me know, we will be home monday, or anything else I can do to help. Take Care!
Angela McCormack
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