I guess we are long overdue for an update. We have just been treading water lately. She was making lots of progress for a few weeks there. The past week or so she has seemed a little more "off". (Possible seizure activity, but not really sure). I've had trouble getting her to take good naps during the day, which in turn makes her more susceptible to seizures, which causes sleep disturbances, which doesn't allow for good sleep, which allows for more seizure activity, etc.... A vicious cycle that we have trouble getting out of. And makes for a sassy little girl and a checked out momma. I notice myself more blah too. I know my mood affects her, but is it the chicken or the egg first...Her being off, I become more down, or other way around. One more thing to document and observe. She hasn't been awful by any means, just a little more "off".
Along the lines of documenting, I've been trying to track as much as I can and look for trends. As of late, I'm trying to keep my eye on preservatives. And drops in barometric pressure. And my hydration, which in turn is her hydration. I know, crazy, crazy, crazy, but I know that they are all pieces and at some point we will know how her puzzle goes together a little more.
We did just hear back from the neurologist that none of her test thus far have provided any answers. The exome sequencing is looking like a good possibility, he just has to figure out who will pay for it. It is a large scale gene sequencing test that could identify which gene is disrupted. But, it is an expensive test and the cutting edge technology is ahead of insurance. So, the sell to insurance is we may be able to avoid random stabs in the dark for various genetic tests and the more we know what is going on could save additional hospital stays and/or unneeded tests. Or the sell to Vanderbilt is that they could be on the cutting edge with Maggie as a very likely candidate for this test. Now...it could give us answers, or ...it could identify something that's never really been heard of before. We already know she is "rare". So, it could be answers with research, or it could be answers with no additional solution. Either way, it may shed a little more light on what we are up against.
Right now we are headed north. Sorry to some, but not to Iowa. (December 6-11 we will though!) We are on our way to Conneticut for 3 days of intensive therapy. It's the same kind that we receive in Knoxville, but it's the main hub of the therapy and will be all day long Monday, Tuesday, and Wednesday. Carla, my stepmom and a PT, will be flying out to join us. She has been a wonderful sounding board for me as we try better understand the body. We are super excited to spend some time with Grandma! And Shawn with his Mother-in-law! :)
We also got to spend the night with some super cool friends-they were in the children's ministry at the church I worked at in Iowa City in my single days. See picture below of the super sweet Smith girls with Mags. The 4 girls remind me of me and all Mags' aunties! Awesome that they are right on our path and opened their home to us for the night.
Also, I get to find an IKEA-yippee! And, Daddy gets to drive us around where he grew up outside NYC.
And, we will hopefully get to see our niece and nephew, Amelia and Quin, one of the days while in CT.
How I would love for us to explore much more. (This is one area of the country I have not traveled much). But, we are trying to stay low key and not try to do too much. Really sounds like that, right? But this is low key for US! And an adventure nonetheless.
On some side notes...
Please be in prayer for some friends of ours. A sweet little guy we know is preparing for surgery next Tuesday. He is 10 months old and also has seizures. His grandma worked with me at Hal Henard last year. I know there are so many emotions built into this procedure for his family, so please lift sweet little Everett up with us!
I have found great online communities of moms walking similar journeys. It's great that they get it and we can share each other's burdens, being able to completely empathize with one another. A Christian community of moms with child with any disability is a Facebook group called "(in) Able-an (in)courage community". Another group is "Epilepsy in babies, toddlers, and children support group".
Also, I started a "Healthy Homemakers" group for those interested in learning from one another on how to better treat our bodies as the temple God designed them to be. Join any if they pertain to your situation too.
That's all for now. We are almost to Ikea!