I wanted to update all on what has been going on with us lately. We had kept this off the blog for awhile but now feel ready to put it 'out there.'
At the beginning of the month, Elle went up to Columbus, Ohio to have a port put in her brain in order to receive an experimental medication every other week (for the next foreseeable future). She was up there for almost 3 weeks. I had sent some emails to keep some friends and family updated so I am going to post those below in chronological order to get everyone up to speed.
There is more detail in the emails below. We are headed back up to Ohio this week to get Elle's second infusion of the enzymes (the experimental medication). Please pray for this trip, especially as all 5 of us will be traveling to Columbus this time.
Oh and really quickly...
Elle's port site is still looking great and healing well. She had a drop seizure Friday morning that threw her into a door frame and she had to get a couple of stitches on her forehead. Her seizures are just so frequent - almost constantly - and the past couple of days have been very difficult for her. She has been inconsolable and so irritable. Much of the time, she doesn't even know what she wants. Also, her walking has declined again. We are hoping and praying that another dose of enzymes will help boost her...we are cautiously optimistic as we saw some little improvements after her last infusion.
Ann Carlyle is doing well. No big changes with Milla this week. We are all still healthy! We are still utterly exhausted as our night help has been inconsistent at best this week. Please continue to pray for this issue.
Elle's port site is still looking great and healing well. She had a drop seizure Friday morning that threw her into a door frame and she had to get a couple of stitches on her forehead. Her seizures are just so frequent - almost constantly - and the past couple of days have been very difficult for her. She has been inconsolable and so irritable. Much of the time, she doesn't even know what she wants. Also, her walking has declined again. We are hoping and praying that another dose of enzymes will help boost her...we are cautiously optimistic as we saw some little improvements after her last infusion.
Ann Carlyle is doing well. No big changes with Milla this week. We are all still healthy! We are still utterly exhausted as our night help has been inconsistent at best this week. Please continue to pray for this issue.
Thank you all for reading this and keeping up with us and supporting us in so many ways, big and small. It all matters. Matters a lot. Much love! (Early September updates to follow...)
Dana
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