I wanted to share an update on how Tanner is doing these days and our intentions for the elevator we so need. In an effort to gain better seizure control and after trying over 17 different pharmaceuticals, 2 steroids and 8 CBD oils, we decided to start weaning Tanner off all medications. To our surprise, in doing this, his seizures started to decline for the first time i can remember in his life! He was and is still having daily seizures, but they had improved. We were then contacted by a former Neurologist of his and asked if Tanner would be in a trial for a new anti-seizure medication. Most of you are reading this saying, of course they said no, they decided to wean. That's true, but we have also always said we will never live in regret. What if this new medication works and we didn't try it for Tanner when we had the chance. This is not a placebo trial, so he is guaranteed the actual medication. So we said yes and therefor had to put a pause on the wean. After only 5 days, Tanners seizures seemed to have worsened so we pulled him from the trial and stopped the medication. Since then, his seizures have not gone back to the improvement we originally saw. The neurologist and the bio-chemical company doing the trial contacted us and asked if we'd go back on, on any terms we wanted. There is a possibility his increase of seizures was a coincidence and unrelated to the new medication. The tests they've done show a minimum of 2 weeks before the medicine gets into your blood stream, so if they are correct, we acted prematurely. But who knows!! Figuring out what's right or wrong is very difficult when all we want to do is help our son. This trial drug was announced to us at the CDKL5 conference and we had been looking forward to trying it actually, so in the next few weeks, we will be going back on.
Tanner got some new wheels! He had outgrown his old wheelchair quite awhile ago, before insurance would approve a new one, but now he's got it and it looks much more comfortable! We are seeking an organization that will take wheelchair donations so we can donate his old one.
The elevator...
In the 2018 calendar year, we raised $25,000 to go towards an in-home elevator that we need so much! I had a quote from an elevator company and a contractor and the rough drawings (A $50,000 total investment). Our plan was to hopefully raise enough money for the elevator, be approved for a wheelchair accessible bathroom from Sunshine on a Ranney Day and have another 2-3 years (hopefully) until we will need to sell our van and buy a wheelchair accessible one. When I got up the nerve to write into Make a Wish, our hope was to put a pool in the backyard since Tanner loves the water so much, with some assistance from them. Our plan hasn't exactly gone as planned though. We were denied, for the 2nd time from Sunshine on a Ranney Day and have now reached our limit of applying. Wow!! We know many people who have received approvals and home makeovers who are not nearly as severe as Tanner, who needs to much. It's a shame to think that "politics and popularity" can play a part in what should be such great, kind and giving companies. So we went back to the drawing board. Just to give a little more background, Tanner is almost 5 years old and 60 pounds. Carrying him in and out of a bathtub is getting very difficult and very painful and will not be possible for much longer. Similar to carrying him up and down stairs. His therapy room is in our basement, which he needs for his weekly appointments and just to have a room to go to and play! The main level is obviously where he spends a lot of time with us as a family and we prepare his feeding tube to eat. We do have a bedroom on this level, but he seizes all thru the night and it is unsafe for us to be sleeping on a separate floor. His bedroom is on the 3rd floor. We recently bought a portable ramp just to get his wheelchair in and out of the car because it is now too heavy to lift on our own. This ramp can also help with wheeling Tanner in and out of our house.
Our plan now is to apply to Make a Wish for a wheelchair accessible bathroom. CDKL5 kids do typically get approved (not that that makes me happy), so maybe we can get some assistance there. We found another elevator company and contractor who can save us about $9k by going with an elevator lift vs. a full shaft elevator. That would definitely help us out if that's an option that will work for Tanner. In the meantime, I am reading up on a company called Ride To Give. They are another 501c3 company that can fund-raise for you (i think) and help raise additional funds for medically fragile people who need assistance. If approved, any money raised would also go towards the elevator. If our new plan works out, we should be all set to finally make our home accessible for our baby boy, putting the pool and van on hold for now. Just please know that it is because of all of YOU, our friends and family, that we were able to raise the $25k we have and we WILL use every penny of that money for an elevator. Just because it hasn't happened yet, doesn't mean it won't. The costs that go into having a severely disabled child are extreme, but we are trying to plan as best as we can to bring everything to fruition. And we will get it done!
Happy Hanukkah, Merry Christmas and Happy New Year!
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