Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged neurology

Hospital Day

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We just spent another day hangin’ out at the University Hospital, making our rounds to all the departments Leeza needed to see today. Here’s what we found out…

Orthopaedics: As amazing as it seems, we are not hurting her joints when we can’t keep her in her full leg braces. Despite the fact that she can literally walk on the tops of her feet or spin her right leg 180 degrees backward (and never realize it), it’s not causing damage at this point because she’s so little. As she gains weight that will change, but for now it’s a relief. We are going to try a new leg brace system that is more rigid and will connect to her ankle braces, which is supposed to be much faster to get on than her Theratogs. We were also warned that when she’s about 7 or 8 we will likely be looking at major leg surgery that would break the leg bones and reset them so they rotate out like they should instead of allowing her legs to turn inward. Sounds horrible, but apparently it’s fairly common for kids like her and will reduce the need for leg braces as a adult. At that point she’ll also have built up enough strength to figure out what type of equipment she will likely use as an adult (walker, wheelchair or motor wheelchair).

Pediatric Specialist: We’re reworking the bowel program and trying some new meds. We have a few meds we can try to see how her system reacts before we have to move on to more invasive procedures. A J tube is still a possiblity in the future, but not until after her spinal surgery.

Neurology: The right side of her brain has no external fluid!!! It did as of 2 weeks ago. We’ve been waiting for this fluid to drain for months and suddenly it disappeared for no apparent reason. The left side still has fluid, but has also improved a little. We’re going to give her 6 more weeks to see if the left side takes care of itself. If it doesn’t, she’ll have a hole drilled to drain the fluid, we’ll wait a bit to let the brain reattach to the skull (it’s pulled away because of all of the fluid) and then we should be in a place to have the spinal surgery to detether her spinal nerves. Dr. M is sure we’ll be able to get to that sometime this year, which was very encouraging.

All in all it was a very productive day. Since we didn’t have other kids to keep up with we could walk slower and let Leeza push her herself in the wheelchair. She did really well and throughly enjoyed everyone stopping her to tell her how cool her pink chair with the flashing wheels was…and of course all the usual comments about ‘all the curly hair.’

5 months

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Leeza’s been home almost 5 months now….that doesn’t sound like much time, but it’s felt like a lot longer. Part of that is because the girl has kept us hoppin’ with all her medical appointments, but we’re making some progress! Here’s a quick run-down of where we are:

Urology: we’re basically in maintenance right now. She’ll go in for urodynamic tests from time to time, but as long as we don’t start having problems with infections she’s pretty much where she should be. We were told to start considering a surgery to help with her bowel program after she’s stable from the spinal surgery.

Neurology: We just had another MRI today and her ventricles are continuing to close well and her brain has grown enough that her shunt could be moved down to the next lowest setting. This is probably the setting she needs to have the spinal surgery done. We go back in in 2 weeks for more MRIs to see how her brain handles this change and, assuming she keeps responding well, we’re penciled in for surgery to de-tether her spine May 20th. She has grown 3 inches since coming home and we’re starting to see some changes in her body that make us wonder if some nerves are being stretched and damaged.

Dentistry: Her teeth looked great. She has spots where her enamel didn’t fully develop, probably because she was premature, but they’re baby teeth so her permanent teeth should be just fine.

Psychology: We had her tested at the University for cognitive/psychological/developmental progress and she came out at about a 2.5 year old level. It’s very difficult to tell what’s brain-based and what’s because of history at this point. We’ll go back in a year to retest and everyone is expecting that gap to close considerably.

Physical therapy: She’s going once a week for therapy and we’re doing daily exercises at home to strengthen her legs and stretch out other muscles that are tight and forcing her into an odd posture. She has a walker and we’re in the process of getting a wheelchair for longer distances. Her feet turn in so much that she literally falls over her own feet when using the walker so we’re troubleshooting how to help that. Right now it looks like a crazy contraption with tons of velcro that forces her legs to face forward. She is incredibly excited that she can walk, regardless of how hard it is. We’re also working on building up her core muscles so she has better balance.

Speech Pathology: We had a Russian translator last week (for the first time since she’s been home) and were surprised to find out that she refuses to speak Russian anymore. She still understands it, but would only answer in English. She is officially an English speaker now! The therapist recommended sessions to help her with vocabulary, but we really don’t believe this is appropriate right now and we’re amazed at how much vocabulary she already has. We will be meeting with another speech path this month because we’ve noticed she has problems breathing and chewing at the same time and we’d like to figure out what’s going on there.

Socially: Ok, so this isn’t medical, but it’s been a big change. We had planned to keep Leeza with one of us for the first 6 months, but in the past 2 weeks we felt like she was bonding well with us and she and I both needed a little space. She’s been able to stay with babysitters (with the other kids) for short periods of time and gone to the church nursery a few times. She’s done great and loves it! She was very tired of having to sit next to me in Bible study and MOPS and feels like a big kid now that she gets to go play with everyone else for a bit. She’s starting to remember other kids’ names and has learned enough of some of the routines in Sunday school that she can blend right in with everyone else during the singing and story times.

I think that’s it for now!