Getting Somewhere

Ok, this week has been nuts and its only Wednesday. Lets start with the bed, after much wrangling and many many e-mails and a lot more money than anticipated it will finally be arriving Thursday. Is there a bed prayer? After all this I'm terrified she'll hate it. I might cry if she does.

Ok, on to Shriners which was yesterday, no casting! yeah!! New molds for new braces instead, which is fine with me. I'd rather not have to go up there every week for the next 5 or 6 weeks. The hip is still an issue and always will be, but its not much worse and no signs of arthritis. The right hip and her knees are joining the popping chorus but we've sort of decided its a function of her hypotonia and its just the way she is going to be. The back is good, no signs of scoliosis. So Shriners was a good visit.

And of course while I was at Shriners they called from Kaiser, her liver biopsy is March 13th at 11am. So say a prayer for her that day. Unfortunately I will probably have to pull her out of school at least a couple days before just to make sure she stays healthy. For now she is back to school, hopefully this will continue all next week as well.

And a praise, told you this was a wild week. Kaiser is paying for her new wheelchair and it should only be a matter of a couple weeks before we get it. Finally something that so far, knock on wood-say a prayer, is going smoothly with little, highlight little!, work on my end.

Oh and another praise, guess who finally weighed in at 29 lbs! Not me of course, but Naomi over the course of the last month has gained almost a pound and a half with the added olive oil. Hurrah! for olives!

And that pretty much sums up February, lots of phone calls, lots of projects, and finally some progress.

Back to square one

I've been putting this off since I really have nothing new to report. Every new test comes back normal and yet she is 4.5 years old and weights a whopping 28.6 lbs. I'm stuffing her with calories and there is just no weight gain. We add enzymes and 2 months later I don't think she's gained a thing. 'Course it doesn't help that she's been sick again, a week and a half and counting. This cold coupled with a rise in her Lipase has her sleeping a ton and in some pain. I just wish we could find out what is wrong and give her some relief. The talk now is of a liver biopsy since it is again enlarged, but who wants to do that to such a small kiddo. I'm just afraid we'll go through all that and it will come back normal. I'm beginning to hate that word.