We flew up to Columbus Wednesday evening so that Elle could get her 2nd enzyme infusion Thursday morning. She did great - no complications at all!! Again, we have seen her walking improve a tid bit and her seizures are down a tid bit. This is super encouraging, but we are still a long way from knowing how this will all play out. However, we are so thankful and cautiously optimistic!!
As most of you know, we took the whole family to Columbus this time. Milla was seen by our neurologist up there to just check in and to see if there needs to be any changes to her meds. Because Milla has had these severe seizure-like episodes lately, her doctor wanted to admit her for a 24 hour EEG while we were there. So Friday, just before lunch, Elle got discharged and we got the call that Milla was being admitted for the night. Crazy-town. So we trekked down to the cafeteria and enjoyed a few minutes of freedom and then went back up to be admitted.
Of course, Milla didn't 'perform' like we needed her to do (so that her doctor could distinguish if she was having seizures or if she was just tightening up, etc). But she did have a super mild episode that was similar to her severe ones. The episode that was captured was not a seizure, but rather involuntary movement. This is basically another indicator of her brain degeneration...that her brain has been damaged. We are not sure yet how we are going to treat this but we have a couple of plans to try out.
We just want her to be comfortable and happy without making her too lethargic. And she has been very uncomfortable and much more troubled lately, so we have to figure out something.
Because of Milla's admission, we had to stay an extra night in Columbus and got back home today around noon. We were glad to have everything done while we were up there, but for the love, we are glad to be back home. Frazer and I haven't really slept well lately even at home but especially not for the last 4 nights. Argh. And everything is just so constant when we travel, especially with all 3 girls. Constant, exhausting, draining.
It was good for Ann Carlyle to get up there and see the process, the hospital, etc. even though much of the time, she was bored to tears. She had her moments but mostly, she was super sweet with her sisters and super helpful.
We got together with another Batten family last night in Columbus and a few other families in their neighborhood they are friends with. It was really, really wonderful. A welcoming and warm bunch of people that were super helpful and loved on us all a good bit.
We were also able to visit with a couple of other Batten families that were in the hospital the same time we were. Precious families, precious children, precious time with them. Please, please pray for the Bowman family as they lost their little boy, Titus, last Sunday and then had to fly out to Columbus (from California) so that their other little boy, Ely, could have his brain shunt surgery Friday (and will have his first enzyme infusion on the 11th). Oh how the brokenness of this world weighs so heavily, even as we rejoice that Titus is whole and with Jesus now.
I've had a sinus infection/cold/something since Thursday that is just getting worse - feeling pretty crummy (ps I hope this update is making sense as my head is kind of fuzzy right now) - so please pray that sleep will be the best medicine tonight and I will wake up refreshed and healthy (or at least healthier) tomorrow morning. And please pray that no one else gets this! So far, so good!
Ann Carlyle has fall break this week but the other 2 will have their regular schedule of schools and appointments. I'm not sure I'm quiiiite ready to face the week, but we put one foot in front of the other and we will get through it. Thank God for His sustenance.
I'm so humbled and thankful for all you people that think of us and pray for us and love us so much and so well. Y'all are the best. :)
Much love,
Dana
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