About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Monday, July 8, 2013

Hip Dysplasia

Mira's right hip is not forming into the socket the way it should, which is called hip dysplasia. We went down to Pittsburgh today to find out if it had developed normally on its own, or if we would have to have treatment for it, and we also had her audiology appointment today to make sure she is hearing properly.
Her audiology appointment went great! They said everything looks completely normal! Then we had her hip ultrasound, and then went to spina bifida clinic to get the results of her hip ultrasound. In spina bifida clinic, they informed us that her hip dysplasia has not improved, so now she has to be in a harness. The harness wraps around her midsection and shoulders and straps down to pieces attached to her legs. It holds her legs up in the air so that her thighs are jutted out at a 90 degree angle. Apparently, this position is optimal for encouraging the hip to develop into the socket properly. We have to wear the harness on her for at least half of every day and all through the night when we sleeps. We go back down in 4 to 5 weeks to monitor her progress.
While it is disheartening that she has to deal with another obstacle, it wasn't as big of a kick in the gut as her bladder problems were last time. The issues with her bladder and sphincter caught us completely off guard last time. This time, however, we knew what we were going down for, and we knew what the possible outcomes were, so we were prepared for this news.
It's just going to take a few days, at least, to get used to. She hates it! She screams right now when it's on her because she cannot move her legs into her favorite position. She likes her left leg tucked up under her butt, and she likes her right leg completely extended out... She can't do either of these with the harness on, so she screams because she doesn't like feeling restrained. I honestly can't say I blame her! I'll post pictures of her in her harness soon. Maybe after she gets more used to it so I don't feel like I'm capturing pics of her in a torcher device. 
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