Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged orthopaedics

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.’

Catch Up

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Let’s see…what’s happened since the last post? Leeza went on her first fairly long road trip to visit the Ferdon’s (the missionaries we stayed with in Ukraine) while they’re here in the States. It was good practice for our trip to Texas later this Spring and she did really well. She also went to the dentist for the first time last week. Josiah went first so she could see how it was going to work and she did great with it all. After a urodynamics test and brain surgery a teeth cleaning was a cinch! We learned that the discolored marks on her teeth are probably because she was so premature. The enamel on her teeth is thin and not complete in those sections, but amazingly they look fine and we were just warned to not let her drink juice or pop often (not a problem since we don’t keep those in the house). It was such a relief to have a doctor say she looked normal and didn’t need any unusual follow-up appointments!

Leeza Lounging on the floor during a lazy Saturday.

We also had another University day. I’m starting to feel like we live there. We saw Orthopaedics this week and finished the fittings for her AFO’s (plastic leg braces). These will keep her feet and ankles straight while standing so she can’t keep walking on her ankles. They will also prevent her feet from continuing to turn in. Unfortunately because they are so big she can only wear one style of tennis shoes with them, further limiting her wardrobe. Thankfully, because her feet and legs are so small we are able to use store-bought shoes as opposed to having special shoes made. I expect at some point she will get tired of having to wear these, but for right now she thinks they are very special and pretty and she’s very proud of them. We also got a referral for a physical therapist so we can start figuring out what equipment she’ll need to make her more independent. Since she’s come home we’ve been home-bound because she has no way to maneuver around our yard or a park…with the promise of warmer temps soon we are determined to find a way to get outside and enjoy it!!

We spent the rest of the day in Urology with our favorite University friend, Mrs. Margaret. This is the lady who spent a good portion of the last few months on the phone with me trouble shooting urine and bowel programs. We learned we are doing a good job with her cathing and that NO bacteria showed up in her urinalysis…that’s amazing and very unusual. We also learned that we’ve probably done about the best we can with her bowel program and that to get any better will require surgery. It couldn’t be done until after her spinal surgery and it’s not something that has to be done right now, but we’re interested in finding out all the pros and cons because no one is happy with the way it’s being handled right now. We’re hoping to speak to someone with more knowledge of the details when we go back to the University at the beginning of March.

I think that’s about for now. We get one week off and then head back to the U on March 3rd for a full work up at the Center for Disability and Development.