Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged spine

Yes, We Are Still Alive

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Leeza Dean

Wow, keeping up with blogs hasn’t been my strength lately! Leeza did make it home from the hospital just fine and spent the next 3 weeks hidden here at the house while she healed. It was important that she didn’t catch anything during that time because if her surgical site became infected it could turn into meningitis. We made it through that time fine and her back is almost completely healed now. She missed a month of school, but did school here with the rest of us to keep her in her routine. Since the surgery her core strength has improved and she’s able to use her crutches much more often. The hope is that some day she’ll be able to use them as her primary mode of transportation, but for now we’re just letting her get stronger and continuing to remind her that she can’t use them as weapons when someone upsets her. She has gained some sensation in her lower body, which has changed some of her bathroom routines. She still doesn’t feel pain in most parts of her lower abdomen or legs, but she can feel pressure. It’s taken her some time to figure out that pressure isn’t pain and she’s stopped yelling every time she feels something unusual. She has gone through another growth spurt after the surgery and it’s been wonderful to NOT see her regress as her nerves are pulled around her body. We met with Dr. M yesterday and he said this growth spurt is not allowing her internal stitches to hold together tightly, which is keeping a very small part of her back open enough to leak some spinal fluid. It’s a very small area and it should heal right up when she stops growing so we’ll keep it covered until then. In the meantime we get to see lots of Xrays of her and it’s funny to see that insanely long shunt tube wrapping all over her abdomen.

After surgery we also experienced a shift in her demeanor. It’s hard to explain, but more days than not she’s starting to act more like part of our family. Even friends have noticed that she’s responding to direction with a look of respect instead of defiance. She’s seeking out approval and hugs from me and is slowly starting to accept the structure I set for each day. And after being home for over year she can now participate in holidays and traditions because she understands at least a little of what they are about. Our hope has been that this will be the year when we get to really start to see who Leeza is and it’s starting to look like God is answering the beginnings of that prayer.

Vacation

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Leeza in HospitalOur life has been a little unconventional lately, so it stands to reason that our vacation would be as well….we’re spending it at University hospital while Leeza recovers from her surgery! She had her spine detethered today and it went great. What was expected to take 6 hours took 3 and as Dr. M came to talk to us his face reminded me of one of the kids when they know they just did something really cool. He explained that her lower spine was pretty much a mess, partially due to spina bifida and partially due to whatever procedure was done on her when she was born. As they traced up her spine they found that the spinal chord was totally unprotected from about L5 down because the bone and muscles that should have grown over them just hadn’t. She had as little as 3mm of skin covering parts of this area. I am so glad we didn’t know that beforehand! Dr. M was able to pull the muscles together over this area, use a graft, and do some creative suturing to give her about 1.5 inches of protection now. He also noticed that some of the bones in her lower back/hips had no padding and those were buffed down a little to prevent them from turning into sores later as they rubbed against her skin. The nerves were detached from the bony part of her spine and then tested to see how they were responding. When the same test had been done yesterday she had no response from most nerves, but today there was a response in a hamstring and a big toe. There’s no way of knowing now if that will correspond to increased function as she heals, but it does mean it’s possible, which is VERY exciting! She’s currently hanging out in PICU while Philip and a team of nurses try to keep her from rolling over onto her back, ripping off her bandage or pulling out her IVs. Not the most relaxing vacation, but it’s one we’re awfully glad has finally come!

Once again it was amazing to watch as God’s hand so obviously took care of this little girl. She has had so many close calls and as Dr. M was explaining that her spinal fluid and nerves were almost totally unprotected I started crying. Once again, God had kept her safe. This surgery wasn’t supposed to make anything better, but we’re coming out of it with the possibility of more nerve function. Philip has this funny feeling that one day Leeza will walk by herself and I’m beginning to wonder if she will too…not because she should be physically able to, but because God just seems to keep allowing her to do things that surprise us. I have no idea what He has in mind for Leeza, but His continued care of her is amazing to watch and keeps leaving us praising Him.