Counting down
I can’t believe it’s been over two weeks since my last post – sorry about that. Dan was out of town for business for most of the last two weeks, so I’ve been preoccupied. My awesome friends JC, MC, S/DTG, S/GH (plus others) were a huge help with feeding me and keeping me company while Roxanne and I were on our own.
Roxy is doing really well. Over the last couple of weeks, we went to see the pulminologist (all clear), the epileptologist, and the developmental specialist. Also, she got another EEG. All indicators say the surgery is a go for next Thursday, Feb. 15. On Feb. 14, she’ll get another MRI with feducials (optic markers that will guide the surgery), plus last minute bloodwork and a consultation with the neurosurgeon.
Other than going to doctors, things have been pretty calm. Roxanne has more low seizure days than high lately, which is great for both of us. She had an unusual 4-day streak of low or no seizure days where Roxy really seemed to develop and interact well. That reminds me: she had her first session with the physical therapist yesterday. Excellent! Now I have some exercises (movements? routines?) I can do with her to help improve her muscle tone in her torso, where she’s weakest. Roxanne still has the ND tube for feeding, and miraculously, it’s the same one the doctors put in early in December. In other news, she sleeps through the night most of the time (at long last!), so I’m a far happier person than I was during the sleep deprivation era.
Folks have been asking how I’m coping with the idea of Roxanne’s surgery. On days where she has a lot of seizures, I know we’re doing the right thing, but I’m still nervous, dubious and anxious about handing my 6 month old over to have a portion of her brain removed. I guess that’s why I haven’t been blogging lately. But we’re doing OK, and things are better now that Dan is home for a while.
The doctors say that Roxanne will be in the hospital for 3-7 days after her surgery. During that time, I’ll post updates of her progress. Thanks again for sending your healing affirmations, good thoughts, and prayers.
Roxy is doing really well. Over the last couple of weeks, we went to see the pulminologist (all clear), the epileptologist, and the developmental specialist. Also, she got another EEG. All indicators say the surgery is a go for next Thursday, Feb. 15. On Feb. 14, she’ll get another MRI with feducials (optic markers that will guide the surgery), plus last minute bloodwork and a consultation with the neurosurgeon.
Other than going to doctors, things have been pretty calm. Roxanne has more low seizure days than high lately, which is great for both of us. She had an unusual 4-day streak of low or no seizure days where Roxy really seemed to develop and interact well. That reminds me: she had her first session with the physical therapist yesterday. Excellent! Now I have some exercises (movements? routines?) I can do with her to help improve her muscle tone in her torso, where she’s weakest. Roxanne still has the ND tube for feeding, and miraculously, it’s the same one the doctors put in early in December. In other news, she sleeps through the night most of the time (at long last!), so I’m a far happier person than I was during the sleep deprivation era.
Folks have been asking how I’m coping with the idea of Roxanne’s surgery. On days where she has a lot of seizures, I know we’re doing the right thing, but I’m still nervous, dubious and anxious about handing my 6 month old over to have a portion of her brain removed. I guess that’s why I haven’t been blogging lately. But we’re doing OK, and things are better now that Dan is home for a while.
The doctors say that Roxanne will be in the hospital for 3-7 days after her surgery. During that time, I’ll post updates of her progress. Thanks again for sending your healing affirmations, good thoughts, and prayers.
posted by Talentedhands at
1:25 PM
1 Comments:
Yay for more blogging! That's great about her little-to-no-seizure streak, and yay for the baby exercise routine.
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towwas, at 8:49 PM
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