Today I took Ryan to two appointments in Roanoke. We saw his Pulmonologist and and his Neurologist. He has been having an increase in seizure activity for about 3 moths but the seizures weren't affecting him much. The last week we have noticed that they are starting to get worse and he is requiring oxygen and is more lethargic after the episodes. We decided to talk to his neurologist about them and change his meds. After talking to him and discussing what is best, we decided to add a third medicine to the party. We hope this med works and it will allow us to wean him from one of the other meds. We really have to watch for side effects which are rash and lethargy. I hope he will do well and we can control these seizures better. We accept that Ryan will never be seizure free but when they start to become a problem and cause him to have difficulties then we take action.
Another change we made for him was with his Pulmonologist. We decided to try to use the QVAR Inhaler with a spacer instead of giving him his Pulmocort in the nebulizer. The only reason we decided to do this is because it is just quicker for me to give him the inhaler than to run a nebulized treatment for 20 minutes. He did have a seizure in the office after his Lung Dr administered the Inhaler, so we will have to watch for that. The inhaler with the spacer looks like this:
Both Doctors also wanted to have labs drawn today to check certain things, so we had to go to the lab after the appointments to get his blood drawn. He did so good and didn't even cry when they poked him. Hopefully all of his labs will be good and we don't have to make any further changes for him. After we did all of that we went to lunch at Firehouse subs (YUM) and then we went to Sweet Frog (DOUBLE YUM). The last stop we had to make is to the Wheelchair Van dealership to see if we can use his EZ-Lock system that is already installed in the van. We were so happy to find out that we could use it and all they have to do is order a bracket for his chair. The bad part is that the day he gets it all hooked up and ready, it is going to take 3 or 4 hours of work to get everything moved into place and hooked up because they have to take the van apart to do this. (Ekkk!!) So on that day we are hoping they will let us borrow one of the other wheelchair vans on the lot so we can go shopping and go out to eat while we wait. I can't wait to have this installed. It will make it so much easier to get him in and out of the van once we have this and we won't have to use the manual tie downs.
Thanks for stopping by and keeping up with Ryan. I hope to update soon on some of the activities we are doing during the summer.
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