After Seth's surgery he started having a lot of seizures and a ton more spasms. We have been working with the neurologist and changing up his meds to figure out something that will work. Last Monday we got into Dr. Bernes and we decided to put him on the Vigabatrin (Sabril). We spent the next two days filling out the paper work and faxing it back to his office so that we could get the meds shipped to our house. Thursday S.H.A.R.E (Support, Help And Resources for Epilepsy) called us and verified some information and then told us we should have it Friday by 4:30pm. We got it pretty early on Friday and it came with a lot of information especially how to make it every day. For the first 5 days he gets 5ml-the second week he gets 10ml-and the third week he gets 15ml. We just started giving him 10 ml and if you know Seth at all he is not a fan of taking anything other than his bottle so getting 10ml down him takes about 15 minutes. I can not imagine what it is going to take to get him to swallow 15ml. That should be fun! We have noticed some changes. There are days when he has as little as 2 spasms and then there are days when we notice 10 or more. As soon as he no longer have any we are to call Dr Bernes and keep seth on the dose that stopped them. We will do it for 6 months and then take him off. If he never stops having the spasms then after 3 months we HAVE to take him off of it according to (SHARE)
So after all of his seizures I spent a lot of time online looking a seizure alarm that would beep if he started having one. The problem I was having was A. they are really expensive and insurance is hard to get it covered and B. The person using the alarm needs to be at least 56 pounds. Seth has been 21 pounds since he was 9 months old and if he continues on this pattern it will take him a really LONG time to get to 56 pounds. Sydney is a big girl and she is just now 40 pounds so I am thinking it will be a while before he gets to that weight. Then I heard about the service dogs. They have dogs for people who just need help in everyday life, Guide dogs, dogs for the deaf, Autism dogs, and seizure alert dogs. So I really started looking into this. A lot of sites will not give dogs until you are a certain age. (for example to get an autism dog you need to be at least 4 and for a service dog you need to be 18 and for a guide dog at least 14) and each site has slightly different ages for each of their dogs. Well I finally found a site that does not have an age limit on it. They believe that the younger the better. Now it also is really expensive to get a service dog. I am talking about 22,000-26,000 dollars depending on which company. The company I found is 22,000 dollars but they only require you to raise 13,000 of it and they cover the rest. So today I printed out the application and I will send it in and start thinking of ways to raise this kind of money so that we can get him a dog that could help us in so many ways and also a dog that will be his and his best companion.
This week and next we have quite a few appointments. Seth has to have a swallow study and a sweat test done, along with getting his feet/legs casted for braces, meeting with his gastro because last week at his 15month check up he went from the 50% to the 10% in weight so we will be talking about his nutrition and feeding tubes which is something that I do NOT want, also an ultrasound and follow up appointment from his surgery to make sure that everything healed okay and that the kidney reflux is resolved.
If you have any fund raising ideas please comment and let me know cause I am totally new in this area!