Jackson is heading into day 27 of being seizure free! The Sabril is working and our little boy is changing. Friday we went to see his neurologist and he kept saying “Jackson looks so good!” It’s true, he does. There is definitely progress happening in his brain and the kid is finally showing us who he is without the seizures. He is more alert, in good spirits, curious, and reaching out for everything. Which brings me to the Target display disaster.
When Jackson was having seizures, it seems to me now, that he was just pretty numbed up. He wasn’t very excitable and didn’t show a lot of interest in things. That is starting to change (thank goodness), but it has been his way of life. Before when we were in any store he would just sit in his stroller kind of looking around. Yesterday we went to Target and before I knew it Jackson was leaving a trail of destruction through the shoe aisle. I stopped to try and find him some sandals for summer and as I was looking at shoes, Jackson was grabbing pair after pair and throwing them on the floor. By the time I turned around there was quite a collection. At first I was like “oh crap!” and I started putting the shoes back. But then I had one of those Oprah “Aha” moments. Aha! My son is grabbing for shoes and making a mess! I was suddenly so happy I got tears in my eyes. Jackson was “that kid”, the one making a mess in Target. I couldn’t stop smiling and laughing. And you know what? I just left those shoes on the floor. It was like a shrine to me and I wasn’t going to destroy his work. As we made our way through the store, clothes were pulled off hangers, toys were pulled off shelves and I just kept smiling. I want to take Jackson to the store every day now and seeing what he can destroy. I feel an overwhelming sense of joy to be the parent of “that kid”.
The fact that he is seizure free is such a relief. But as I have mentioned before one of the side effects of this medication is permanent peripheral vision loss so his eyesight has to be examined every 3 months. In 6 months if the medicine is still working we will have to go back to Seattle Children’s Hospital for an in-depth vision exam. In 2 months we will have another EEG done to see what brain wave activity is happening. At this point Kevin and I are both feeling that the vision loss may be worth the freedom from seizures. It’s a tough decision, but Jackson making progress, learning, and developing cognitive skills is vital to his being able to live a better life. The progress he has made this last month has just been awesome. He is standing up and taking steps (with support), he is starting to show interest in toys, he is more interactive with people, and he has been a happy boy. I feel like if he can make this much progress in one month of being seizure free, then great strides may be in his future. We just have to stay on this path for a while and see what the medicine will bring us.
Last weekend Kevin, Jackson and I drove to a little town called Royal City over by the Columbia River. Our mission was to deliver Jackson’s brand new twin mattress to a man named Dwight. A man we had never met and who had never met us. Through a friend of ours, and her dad Gordon, Dwight heard about our plight for a safe bed for Jackson. And just like that a stranger offered to build Jackson a bed. Dwight is a retired school teacher. He taught Shop. Dwight and Gordon are going to work on the bed together. It’s pretty exciting and touching. I’m still not sure how you thank someone for something like that. I do have to say that before the bed making offer came from Dwight and Gordon another friend of ours offered to buy the SleepSafe bed for Jackson. Just FYI, those beds run about $5000. I was overwhelmingly touched by that too. But there was no way I was going to let that friend spend their hard earned money on us. Both of the offers were excellent reminders of how well I have chosen friends over the years.
Although Dwight and Gordon are working on Jackson’s bed, don’t think that I have given up the fight with Molina Healthcare! It’s not so much about getting the bed now as it is the principle of the fight. Molina first denied the bed based on the fact that we hadn’t proven the bed was the most costly or effective. Then when we did prove it, they came back and said “Oops, what we meant to say was we just don’t buy beds.” I don’t like my little boy getting jerked around by big, rich insurance companies. So I am going to ask for an Administrative Hearing. The Justice Project (attorneys) find Jackson’s case intriguing and have agreed to take a look at all the documentation and see if we have a case. I’m still going to fight Molina until the end of the road, but Jackson is going to have a nice, safe bed soon and that is all that matters.
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