Tuesday, September 30, 2014
LeBonheur - Day 1 (again!)
Quick update while I've got a second...
It's been a good day - I was so excited that we got hooked up to the EEG THIS MORNING around 9:30, which has never happened in our previous LeBonheur visits! In April, it was around 5pm and in June it was 9pm...so I feel like this day has actually been useful this time around. And she has been seizing 'nicely' all day so that's useful too. :) She also had some blood drawn this morning to check her drug levels and some other blood levels - just routine. (Again, so thankful this happened this morning and not in the middle of the night.)
Also, a huge awesome blessing...our room. In April, we were in this same room and had an incredible view of downtown, including the pyramid, bridge and incredible sunsets too. The pyramid was, by far, Milla's favorite thing. She looked at it all the time, told everyone else to look at it all the time and was constantly asking about it when we were here in June and were on the opposite side of the building. So I sheepishly asked our dear friend, Tim Flack, who works here at LeBonheur as a family advocate, to see if we could possibly request this room. And we got it!!! Thank you, Tim!!! She is again looking at it all the time, telling everyone else to look at it, and at nap time when I closed the blinds, she asked me if she could see the pyramid one more time before she went to sleep. I mean, melt my heart. It gives me so much joy to see her so happy to have the pyramid back in her life. :)
Tomorrow, Milla will have a re-evaluation with neuro-psych. She was evaluated in April and didn't do so well. But the results were also somewhat skewed as she was seizing so much, it was late in the afternoon, and we had already been here for 3 days. She was re-evaluated to a certain extent through occupational therapy but I think the neuro-psych one is a little more extensive and is evaluated by a psychiatrist. So this is a good thing. Dr. Wheless wants to see her progress (or lack of) and make sure she hasn't digressed as well. And the evaluation will be happening tomorrow morning when she is the most energetic, etc.
Thursday, she will have an MRI. Kind of like the neuro-psych eval, Dr. Wheless is looking to see if her brain has had no change or has gotten worse (last MRI showed no brain growth from the previous MRI 6 months prior). Best case scenario is obviously that her brain has grown but he seemed like he would even be somewhat okay with it having no change. I'm planning on asking many questions about all this once he has the MRI in his hands...don't know a lot at this point.
Dr. Wheless also mentioned the genetic test we had to have redrawn a few weeks ago as he's pretty anxious to get those results. The lab that processes this test recently told them that their turn-around time is much shorter than it used to be and the max waiting time should be 8 weeks. I believe it's been 4 weeks since it was sent out...it's nice to realistically hope for answers in the next month.
So it's been a big day for Milla - I'm so thankful to have gotten so much 'done' this morning. The previous 2 visits, we've literally sat around all day long with no EEG, no lab done, etc. Just twiddling thumbs. Today felt very productive.
Thank y'all for praying!! I feel like God is already answering so many prayers!! And I feel encouraged. :)
"Come to Him, then, poor heavy-laden sinner,
Come needy, come guilty, come loathsome and bare;
You can't come too filthy - come as you are." (For He loves you so.)