Our family's journey through a diagnosis of spina bifida, followed by fetal surgery.
Callista
Friday, September 13, 2013
18 Month Check Up (a little late!)
Callista had her 18 month check up today. She is 29" long now, and weighs almost 22lbs. I am happy to say she has grown! I was a little worried about her weight, since she had such a rough time after her surgery and has been consistently puking for quite awhile. Apparently it isn't having an effect on her gain! She actually talked to our pediatrician today for the first time, even though she's been babbling for months. Annnnnnnnd....we finally got a prescription for HKAFOs (Hip, Knee, Ankle, Foot orthotics). Maybe we can finally get this baby practicing her standing. Our stander is still in process, but we made some progress with billing this week: one step closer!
Standers help our little ones stay upright, encouraging bone growth, better circulation, healthier digestion, and of course, it helps them finally see the world the way everyone else sees it! I am looking froward to her being able to be at a higher eye level and interact more. It will come with a tray so we will be able to sit toys in front of her.
Next Friday, Callista will go to Myelo clinic. This will be the first one I have ever missed. I am sad, but daddy will be able to handle it (with the help of our nurse, everybody needs food and a bathroom break at some point!). I hope they see the massive amount of progress that we see after her decompression surgery. Sure, she is no where near where she would be if she was a typical child, but the girl feels better and that is what matters.
We still have no news from our Homecare Waiver reassessment, so for now we are going with "no news is good news". Our documentation shows her need, now we just need to get the approval. Keep praying!
As for mommy, the new job is going well. I like being able to be home with Callista a lot sooner and the financial aspects have been a blessing for us. A change in insurance *should* make the world of a difference, but we won't see the change for another few weeks. I really had forgotten how awesome it is to work with children directly. It's certainly a lesson to be that all you have to do is trust and ask, and God will give you what you need. Even if it takes his sweet, sweet time doing so. :)
I will update after clinic next week. No MRI (as far as we know!), but she does have a renal ultrasound. They've been stable for a year, we aren't expecting anything new from this. We are getting samples of a blended diet formula though! Plan #987 in Operation: End Vomit!!
Labels:
braces,
daddy,
spina bifida,
stander,
ultrasound
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