Ryder’s time at home has been an up and down rollercoaster, hour to hour. While we are so thrilled to have our munchkin home, it has been a big change. The Ryder we brought to the hospital a few months ago was a delightful, happy boy who nodded “yes” to everything and thought it was the funniest thing to hit the ball off of his tee and run, run, run down the hall laughing. We would search for new foods besides the everyday oatmeal, waffles drenched in syrup, beans and marshmellows that he would eat. The Ryder we brought home is very weak and would be content to watch TV all day if let be.He is not able to eat or drink anymore. He has bouts of vomiting and pain during the day. Ry seems frustrated and angry. He bites his wrists, clenches his teeth, hits himself and things around him and it is hard to get him to laugh. I’m not sure if these behaviors are from pain or frustration from not being able to walk or do the things he was able to do a short time ago. It may also be his vision. His nystagmus is more prevalent and he holds things to the side of his face to look at often. I’m sure his perception is off, which can cause visual disturbance and headaches. I just haven’t been able to “read” these new behaviors and what they mean yet. I’m glad I’m at home with him now and I’m going to figure him out again.
Ryder is on a “mito” vitamin cocktail that insurance still has not approved to pay for. With research and support groups, I have found this to be a common issue that patients deal with. I learned some really interesting information on the MitoAction webpage. Because a lot of Ryder’s cocktail is vitamins and supplements, insurance doesn’t seem to want to pay for it. Ryder has private insurance as well as long term state and CRS insurance. It’s crazy with all this coverage that this is even an issue in my opinion! It might be that each insurance company is passing it on to another to cover it, who knows. We have already run out of his CoQ10 and bought some ourselves. For $34, we get 3 days worth of CoQ10. This is only 1 of his very important supplements. Back to my point though, this MitoAction site is something you should check out if you are going through the same thing. There is a seminar on podcast and PowerPoint called “9 Ways to Get Your Insurance Company to Pay”. Even with preauthorization for a prescription, I have asked the doctor to write a letter of necessity and we will have the prescriptions’ filled through a compound pharmacy. If folic acid is compounded into his vitamin cocktail, then the pharmacist can bill insurance companies using folic acid as the main ingredient. It will be nice to have a compounded cocktail anyways so we aren’t using 9 bottles 2-3 times a day to get his meds ready.
Make-A-Wish grantors came to our house this past week. We came up with 3 possibilities for a family vacation. At first, we really wanted to go on a Disney Cruise. However, it seems the Disney cruises Make-A-Wish kids can go on only last 3 nights. A place called Give Kids the World in Florida was brought to our attention. It looks AMAZING!!! If we do that trip it would be a 6 night stay in Florida with park hopper passes (Disney World & Universal Studios) as well as beach time and the stay at Give Kids the World. I forget the 3rd pick, maybe Disneyland?! Anyways, it looks like we will go on one of these fun adventures either in October or December. YAY!!
I am writing this blog at the Ryan House. This weekend, Les took Ty and Noah camping and Ryder and I are resting/playing at the Ryan House. It is Saturday, and Ryder’s wonderful, amazing and generous neurologist (Dr. Narayanan) stopped by for a visit and chat this morning!! I can’t tell you how amazing this man is! He is working so very hard to find ways to help Ryder and many other kids, including our good friends the Clayton’s children. He stayed for awhile and played with Ryder. He held Ryder while I went to get my phone to show him the birth video I recently discovered. When it was time for Dr. N to go, Ryder didn’t want to come back to me or leave Dr. N’s arms :) Since Ryder’s release from the hospital we have only seen him happy and playful a few times. The first time was at our friends’ house in the pool. He splashed and played. That was the first time we went to a bbq and Ryder did have a difficult time not being able to eat, but Holly distracted him by racing him around in his wheelchair. This weekend has been another time that I am seeing glimpses of the old Ryder. He’s loving his time at the Ryan House! He’s smiling every time I see him! It gives me hope that we will start seeing more and more happy times with the pain under control. We are hoping he gets enough strength back to pull himself up again, crawl or run, run, run after he hits a ball!
