For everyone who's been so kind and kept our little Anna Grace in their prayers, we're now posting periodic updates on her progress, etc.
As of now, she is doing wonderfully. Though she hasn't been weighed in a while, we think she's up to around 15 pounds and about 24" long now. What a little piggy!
Her head and ventricles continue to be stable, and she has no shunt now either. We're still having her head measured once a month, but so far, things are looking good.
She does not have to be catheterized either, so that's great news as well.
She did have a minor surgery to release the tendon in her left heel on May 17. This will help her flatten her foot (correct the clubbed feet) and eventually walk we hope. She had orthotic braces to hold her feet in place for the first few weeks of life. Then she was in full fiberglass leg casts until the surgery. She was supposed to be in casts again for 3 weeks after the surgery, but after kicking off 3 sets (bringing the doc in on weekends to recast), we have given that up and are now switching to AFO braces and Dennis Brown braces (the shoes with the bar between them). Chances are, she will need to have surgery on both feet to help with flexibility when she's older. We will also start physical therapy soon.
We are now going to Children's hospital in Seattle for Anna's Spina Bifida clinic visits. She sees a whole team of doctors there every few months--neurodevelopmental specialists, therapists, orthopedists, urologists, neurosurgeons, etc. Our next visit is August 22. We will also return to UCSF where she was born in January. This is part of the MOMS trial, as they monitor the kids at 1 year and 2 1/2 years.
As for the fun stuff, Anna is an absolute joy, and we are having such fun with her. She's a great baby and is almost sleeping through the night every night now. She's smiling her big toothless, open-mouth grins at us, blowing bubbles, and jabbering like crazy. No laughing yet, but she's so close. What a little angel! We are very lucky!
As of now, she is doing wonderfully. Though she hasn't been weighed in a while, we think she's up to around 15 pounds and about 24" long now. What a little piggy!
Her head and ventricles continue to be stable, and she has no shunt now either. We're still having her head measured once a month, but so far, things are looking good.
She does not have to be catheterized either, so that's great news as well.
She did have a minor surgery to release the tendon in her left heel on May 17. This will help her flatten her foot (correct the clubbed feet) and eventually walk we hope. She had orthotic braces to hold her feet in place for the first few weeks of life. Then she was in full fiberglass leg casts until the surgery. She was supposed to be in casts again for 3 weeks after the surgery, but after kicking off 3 sets (bringing the doc in on weekends to recast), we have given that up and are now switching to AFO braces and Dennis Brown braces (the shoes with the bar between them). Chances are, she will need to have surgery on both feet to help with flexibility when she's older. We will also start physical therapy soon.
We are now going to Children's hospital in Seattle for Anna's Spina Bifida clinic visits. She sees a whole team of doctors there every few months--neurodevelopmental specialists, therapists, orthopedists, urologists, neurosurgeons, etc. Our next visit is August 22. We will also return to UCSF where she was born in January. This is part of the MOMS trial, as they monitor the kids at 1 year and 2 1/2 years.
As for the fun stuff, Anna is an absolute joy, and we are having such fun with her. She's a great baby and is almost sleeping through the night every night now. She's smiling her big toothless, open-mouth grins at us, blowing bubbles, and jabbering like crazy. No laughing yet, but she's so close. What a little angel! We are very lucky!
Posts
