Katy How's Sarah?

iVillage Member
Registered: 06-28-2007
Katy How's Sarah?
2
Sat, 04-30-2011 - 9:37am

Been thinking about you guys and wondering how you're doing.

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iVillage Member
Registered: 06-26-2008
Sat, 04-30-2011 - 12:26pm
Hi Kari!
What surgery was this? How did Kristin handle it all? How were her seizures? Hugs to your sweet girl.
We just go back from Mayo, where she saw neuro and genetics. They were very thorough and nice. Took a lot of blood/urine and are testing for a million things. If nothing shows up, we will go back down for muscle biopsy/skin biopsy. They will do a sedated hearing test at same time, if we go back. Her right ear is fine, her left not so good, but that could be fluid that was behind her ear drum. She is eating a little more lately. She was on antibiotic for a week for her gtube site/abcess looking. It still is so leaky. It had gotten much better looking but then she got granulation tissue, I put that special cream on it. It is improved, but still not back to "normal". I guess it is time to buy some pads for her button? We have started to decrease her Keppra (per her regular neuro, not mayo) to see if that helps with her increase seizures lately. When she first started having more of them back in Feb, they increased the Keppra and each time she got worse. So we are giving this a shot. If it doesn't help, we will decide on trying Felbamate or going to the ketogenic diet.
We were able to stay at Ronald McDonald House. It was very, very nice and helpful. So much better for Sarah compared to staying at a hotel!
I hope they figure out some answers. Either way, I feel confident they are doing their best and know what they are doing. I am so glad we went. Finally feel like someone is on Sarah's team.
Thanks for asking.
I do have to talk to you more about gtube/feeding stuff but I gotta run.
Talk to you soon.
Katy

Katy   Blessed mom of 6 girls, youngest Sarah born May '07 with hypotonia, vertical nystagmus, developmental delays

iVillage Member
Registered: 06-28-2007
Sat, 04-30-2011 - 9:22pm

I'm glad you got to mayo and they were so helpful.

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