We are officially on a wait list with CARES, Inc. out of Concordia, KS. This is exciting for us as they are only a couple of hours away from us. Our wait is going to be 12-18 months, but the outcome will be a fully trained seizure service dog. JW and I will have to travel and stay for at least a week after placement to train with the dog and for JW to learn how to handle the dog. By then JW will be 6 years old and should be able to handle it. They are very accommodating in the fact that it doesn't matter how many seizures or how often JW's seizures are, he still gets the same dog he is on the wait for. Thank you to everyone that has supported and helped with our fundraising, so far, we have enough money for the dog from CARES, Inc. when it will be placed with us. We are still working on the medical bills and if the seizures and emergency hospital trips stay away, we can put a dent in those too. Thank you everyone!!
Well, yesterday marked 3 months seizure free for JW!!! Very exciting!! He is also doing better with the side effects. We have decreased his dosages slightly and have seen an improvement restlessness, aggressiveness and his personality! He is becoming quite the comedian that he used to be. So far the lower dose is still covering the activity and no seizures. He still has some major mood swings, gets mad and sad easily and has trouble paying attention sometimes. But these are not as frequent as before. He would have up to 5 major meltdowns a day and now it is about every other day. So big improvement for us and hopefully it will continue.
We have applied to another organization for a service dog, however they require reference letters and it took awhile to get them sent from our doctors. Hopefully we will know if they will accept us in the next week or two.
We will be switching neurologists again :( After two appointments with them, they called and needed some test results that we thought they had and would need to have in order to treat him correctly. Our last visit they wanted to add another medicine and we are really glad we went with our guts on refusing it, especially since they didn't have all the information they should have to prescribe it. They also tried to lower the dosage of his diastat and when I contacted Cleveland to double check, we realized they were not working with them. We also had the correct dosage and in the event of a seizure the new lower dose most likely would not stop it. It is sad and very frustrating that we have to find another and double and triple check everything, but that is what we will do until we find the right neurologist. We have a call in to our pediatrician for a referral to another and hope this one will work out.
Thank you again for all your support and we will keep you updated!