Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged MRI

Gettin’ Better!

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We headed over to the U today for an MRI to see what Leeza’s brain had been up to these past 7 weeks and got some good news! The fluid that we’ve been trying to get rid of around her brain has shrunk quite a bit so her body is finally kicking into gear and adjusting to the pressure change the shunt created. We had hoped to hear that Dr. M would either relieve the extra fluid at this point or be happy enough with how her brain looked to schedule the spinal surgery, but the down side of her body doing it’s job is that now he wants to wait a little longer to see if it will finish on its own. We left (not being able to see him today) with the thought that we had to wait 6 more weeks to recheck and were probably looking at surgery in December or January. I got a call later in the day, after he’d had a chance to review the scans, and he wanted to see her in closer to 3 weeks and is hoping to get her on the list for surgery in October instead…much better news for us!

Leeza also started alternative Kindergarten a couple weeks ago and is doing pretty well. She’s keeping her teacher and principal on their toes, but they’ve been great to keep trying new approaches when we realize something isn’t working. Getting her (and the rest of the class) from room to room in the school in a timely manner has been challenging because she can’t walk anywhere near as fast as anyone else. Getting the whole class in the elevator has provided some interesting stories, including one where Leeza and another child ended up being almost left in a closing elevator (no telling where she would have ended up!). Her trouble focusing and sitting still have become pretty obvious in the classroom, but we’re working with her teacher to practice some skills at home . Overall, it’s been a great experience for her so far and we’ve been so thankful for the wonderful teacher God provided for her.

Balance

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It’s been another busy week around here. Philip was traveling and got stuck in the middle of the tornadoes down south, Leeza started preschool and we had a University day. Philip is (thankfully!) safe and home, Leeza LOVED school and we were told not to come back to the U for 2 months. We’re letting Leeza finish the last 3 weeks of the school year up at the local preschool so we can all get a better idea of what she can do and what kind of assistance she might need next year. We attempted to write up an IEP (individual education plan) for her a couple weeks ago with the principal, teachers, therapists and district reps and basically we decided we couldn’t do much until they could really see her. One of our biggest hopes was that she would be able to receive some of her therapies through the school district and I was told at this meeting that she didn’t qualify for that. I suppose one of our prayer requests would be that after this time with Leeza they will reconsider this decision. In the meantime, Leeza is enjoying her class and looks forward to going each day. When I ask her what she did at school each morning she always tells me what they ate for snack. That’s it. If I had to guess right now I would say that her future career will have something to do with either food or clothes. We’re also requiring her to use her walker at school and only allowing a limited amount of scooting around. She has to work really hard to keep up with the other kids, but it’s a great work out for her and will really strengthen her leg and core muscles.

Her last MRI scan showed that the ventricles are continuing to close some (which is good), but that her brain still isn’t growing (not good). That means that the fluid around her brain isn’t going anywhere. Dr. M said we could either give her a couple months and see if her body kicks into gear or drill a couple of holes in her skull and drain the fluid off that way. The wait-and-see approach seemed to make more sense at this point so we don’t have to go back to the U until June!!! We’re also choosing to space out her physical therapy sessions and have opted not to schedule a few recommended, but not urgent, appointments with other doctors. We haven’t had a week since December that didn’t include multiple Leeza appointments and we’re realizing the need for a more balanced approach to her care. I think by mid-May we may hit our goal of a completely appointment-free week!

6 months

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Leeza’s been home with us for 6 months today. She’s come a long way (and so have we) and she still has a long way to go (and so do we).

She had another MRI scan Wednesday and there was no positive change. Because her brain isn’t growing the doctor is having to allow her ventricles to enlarge again to fill up the space so we can get rid of the fluid that’s surrounding her brain. Her surgery for May has been postponed until her brain grows and stabilizes and there’s no telling how long that will be. We’ll go back in in 2 weeks to do the whole process over again. We’re getting quite a collection of MRI ear plugs here at the house.

After seeing her MRIs I suppose I shouldn’t be surprised when we have conversations like this:

(after being in time out for whining)

Me: Leeza, can you tell me why you were in timeout?

Leeza: Ummm…Jesus?

Me: No, Leeza, I’m asking why you were in timeout.

Leeza: Spank?

Me: No, you didn’t have a spank. What did you do to go to timeout?

Leeza: Daddy?

Me: Leeza, do you have any idea what I’m talking about?

Leeza: Gracie?

Me: Never mind. You can go play.

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!