Tuesday, April 14, 2015

One Month Out!

One-Month Post-Op!!! (Well, she was on the 11th!) I can’t believe we are a month out… time as flown by!
Things are going well, and continue to get better. Kaylie doesn’t need my help getting dressed, or after she uses the bathroom, but I still have to help her shower… she says she doesn’t feel steady bending/looking down to wash her body… and washing her own hair isn’t an option either. She still continues to wear the neck brace, but mostly in the car, out in public (sometimes she will take it off… in none crowded places), and when her neck gets tired. Example is her tutor was at our house and they were working on her school work, in about 45 minutes in she wanted to put her brace on… she doesn’t complain of pain, she says “it’s tired”.
The homebound situation is going well, and her school is completely supportive and understanding about everything. It’s really great to have a school this way for parents in these situations, as it takes a lot of stress off of it all.
PT is going great too. She still is going just once a week, and loves going! She says she feels “looser” when she goes. Kaylie is still a little stiff in the neck, and you can really see that in pictures like our Easter pics, or when she has the brace off. Her mobility is getting good… typically with cervical fusions of her nature (O-C2) you will loose 30% mobility, but since Kaylie has EDS (Ehler-Danlos Syndrome) the percentage is less, b/c that “extra” flexibility actually helps out in this area, even those EDS is the cause of her Retroflexed Odontoid Process (the need for the cervical fusion). Below is a video of her looking left and right and up and down. Looking up is a little hard too, her PT explained to me: since the rods are fused to her skull, it’s in a “fixed” area… so it will be limited.

She does look stiff in these photos, but part of me wonders  if what was
coming the next few days didn't play a role into it all. This is Easter morning, later
that late afternoon, she started not feeling well, and her head was hurting.
Then the next few days we had weather issues… so I think it was all weather related. 

I’m still currently looking for a Rheumatologist for her in the Texas area. I’m emailing a few, and talking to other patients for suggestions before making an appointment with any of them.
I’m also trying to find a better symptom tracker application/system. I think she has a lot of things that go on, that I need to keep better track of, that are not related to Chiari.

Her incision is looking great! I actually think the healing process this time around has been a lot quicker. Possibly due to she had steri strips last time. She does have a tiny bit of keloiding of her scar going on… but I honestly think it doesn’t look bad at all.

Things are going good!!

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