So the last two blogs have brought me to this. And this is going to be one of the hardest posts that I have posted yet. You see I am a planner, a list maker, a do-er. I enjoy order and method and cleanliness and beauty. Yet in trying to handle five kids, seizures every single day, the military life, our family on the other side of the continent, and buying our first house that was worse than a lemon.....well...it has been quite the adventure.
Avagrace is going to have seizures. She has used nearly all of the FDA approved Anti-Epileptic Drugs (AED's) and has not had relief. We removed the VNS so that we can do whatever it takes to restart her heart if she has heart failure during a seizure again in the future. And now we weigh our options on other types of surgeries.
As far as removing a portion of her brain, well we are still not at that point....not to talk about it, not to do anything more than listen to doctors opinions and pray.
But the hear and now consist of several things. We must figure out how to make our house ADA accessible aka wheelchair accessible with at least uniform floors (think vinyl flooring with squishy rug mats under them so that they are able to be maneuvered on while she is in her chair but are soft and safe when she falls).
The thought of making our home accessible is daunting and makes me want to cry.
Avacake also really needs a new helmet.
Then, there is the problem of bathing. You see our bathtub does not fit her special bath chair and so we need to finish redoing our downstairs bathroom but we are very VERY bad at home repair/remodel! And are even worse at magic-ing the needed funding for said project to be completed.
The next major thing that we need to consider is a second vehicle that can not only transport our entire family but can also fit the oxygen bottles, the compressor, the suction machine, her chair, etc. And to be able to have it handy cap accessible would be the best option because the chair could be her chair in the car. That way when she seizes she is already in the proper position, and it will make seizure first aid that much easier and that much safer to perform.
The last thing that our family is in serious discussion and prayer over is how we can divide the children so that I can live in Colorado with Avagrace so that she can have a chance at the miracle drug of medical MMJ which has saved so many kids with disorders like my daughters. With five kids and my husband active duty Air Force, he would have to stay here working at the base he is stationed at and I would have to take Avagrace to CO. We would need to figure out how his one income can stretch to two houses and if it will even be worth it for us, because what if we divide our houses and then we do not even have success on the therapies there.
So this is what is floating around in my head as I am supposed to be sleeping tonight. I wish that I had a fairy godmother that could come and love on me a bit. This mama needs a Titus 2, or several... But I am sure that I am one of a million moms of special kids that feel this way.
My babies are sleeping peacefully and for that I am so very thankful!