Adopting Grace

The journey to bring our little girl home

Browsing Posts tagged brain

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.