Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged wheelchair

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.’

Jonah and the Zoo

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This was posted on a friends blog this week.

http://covenantbuilders.blogspot.com/2011/06/story-time.html

It’s a great story and this family really needs prayer right now. They are in country and waiting for a miracle to happen so they can bring little Jonah home. Please be praying for them!

In news from the home front, Leeza’s wheelchair is here!!! I can’t tell you how relieved we are to finally have it. She still uses her walkers most of the time, but long distances are just too hard right now. And it came just in time because we had been invited to the DesMoines zoo for a Dreamnight, a time set aside especially for kids who spend a significant amount of time at the U with chronic and fatal illnesses. We had a wonderful time and I was a little caught off guard by how great it felt to be around other families who have children with challenges that most people never have to think about. It was the first time since we became a family of 6 that I felt like we were normal and it was a relief. We were a little concerned how Leeza would do around the animals since she’s basically terrified of ALL animals. We’d spent the last 3 weeks studying animals she would see and making our own pretend zoo here at the house. She did great! She’s still deathly afraid of every dog, cat, squirrel and bird that gets close to us, but animals in enclosures were fascinating to her. I’m going to count that as a step in the right direction!

MRI

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Just an  update because a couple people have mentioned they are waiting to hear how the MRI went today…Philip took Leeza down to the U this morning and there’s almost no change from 2 weeks ago. She still has a large amount of water around her brain so the shunt was adjusted to its’ highest level and we’ll go back next Wednesday for more MRIs. Since we thought Leeza was having a shunt malfunction this past weekend Philip was able to tell the neuro staff what we’d seen and they assured us it was not a malfunction and told us how we could differentiate it from a regular illness next time. Considering that is wasn’t a malfunction we learned that Leeza is a really whiny sick person (hopefully that’s a stage!).

We also got a demo wheelchair this week and I can’t tell you how wonderful it is to see the possible end of taking a double stroller everywhere we go! Leeza still has to build up a lot of strength to be able to use it efficiently, but she likes it and is already able to get from it to her car seat alone. Yea! And it allowed us to get out in the yard yesterday afternoon without her having to scoot everywhere. I’m loving this chair so far!

Changes

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I’ve been slow getting updates here, but we’ve been pretty busy. Leeza has continued her weekly PT sessions, along with some speech and occupational therapy,  and we’re still working on getting a wheelchair ordered. She uses a walker, her ankle/foot braces and a velcro contraption called a Theratog to help her walk when she’s at church or other open places, but most of the time she scoots to move. She got to try some crutches a couple weeks ago and she doesn’t have the core body strength to use those at this time. We hope in the future they would be an option for her. We have had a few people ask if she’s expected to ever walk independently and the answer to that is no. Both of her hips are dislocated (and there’s no way to fix that) and she’s never expected to gain control of anything below her knees. It doesn’t mean she won’t be independently mobile, just that she’ll need some sort of equipment to support her.

We’ve also been spending a bit of time at the University checking out her brain. Her shunt had been adjusted to a lower level last time I wrote, but when we went back in a couple weeks ago the new MRI showed that almost 1/3 of her head was water. The shunt was allowing the ventricles in her brain to decrease, but her brain wasn’t growing fast enough to fill in the space so her body was filling it with fluid. Not good. The shunt was put back to a higher pressure and we go back in this coming Wednesday for more MRIs to see if it looks any better. We knew that Leeza was acting more confused than usual and was just totally lost when we deviated from our normal schedule. In the past couple of weeks we’ve noticed several other changes in her, but it’s difficult to know whether they’re because of all the changes going on in her brain or because she’s growing and her spine is still tethered. The symptoms of both are very similar and very frustrating at this point because we’re watching her decline and there’s nothing we can do to stop it until her brain is stable. The spinal surgery will release the nerves that have attached to the bony part of her spine and will stop any further damage, but until that surgery can be done damage is continuing to happen and she is  losing function that may or may not be regained. At this point we just ask for prayers that her brain would stabilize so we can keep our surgery appointment in May and for patience and understanding for all of us as we learn to live with this uncertainty.

On a happier note, we got to go visit my family in Texas last week for the first time since Leeza has been home. She finally got to meet her Memama, had her first chips ‘n salsa, met her first horse (she was terrified!), met 2 more of her cousins and was in her first race. Philip and the kids, my mom, one brother and his girlfriend all participated in a race while we were there and we had a great time. Despite our fears that she wouldn’t do well on a long car ride, she did great! We spent almost 16 hours in the car on the way home and with the exception of 1 food fight in the back seat, it was pretty uneventful. Thank goodness for DVDs!