Gavin came home Saturday evening. They never did find out what was wrong with him. He must have just caught a virus and, as usual, his body just can't handle what yours and mine can. He is still on oxygen. Hopefully we can wean him off from it again soon!
While in the hospital his neurologist was on call, so he came to see him there. This was a relief since the next available appointment was in December! We did not receive good news from him. The stroke that Gavin had back in April was throughout his entire brain it looks like! The damage is not reversible either! The stroke he had is not like the ones adults have. When an adult has one it basically kills off part of the brain and hopefully the person is able to use the rest of the brain to recover. The type Gavin had is all over, but it did not "kill off" the whole brain. The neurologist says the CAT scan looks a lot worse than Gavin does visually. I don't know if this is a good thing or not. It could mean that Gavin is a tough little guy(we knew this already though!)and he's fighting through to make some contact with us and could progress further down the road OR it could mean that there is little hope for him progressing mentally or physically. The neurologist just doesn't know, but he didn't seem very hopeful. He also said that we may never be able to fully stop the seizures. He did increase one of the meds that he is on for them though. I have tried to always hope for the best, but it's not looking like a bright future for Gavin. We all really just need to accept that Gavin may never progress any further than he already has. I'm REALLY depressed about this! I don't want to accept this, but it's looking to be this way. I would really appreciate it if people would be considerate of my feelings right now and down the road. I really can't answer your questions anymore about how Gavin is doing, if he's progressing, if physical therapy is helping, if Gavin is eating by mouth. It wears me out emotionally having to go through these conversations all the time, especially knowing now that he may never get further. I understand that you ask to be supportive, but I'm just tired. This doesn't mean that we don't want to talk about Gavin and it doesn't mean that we've given up the fight. It just means that I need some space right now and that I don't want to have to always be consumed with what is going on, because quite frankly, this is how I feel---totally consumed! Please pray that I/we can not feel this way and that we are given the strength needed to care for Gavin and our other boys. Thankyou for your love and support!
I am so thankful for our other boys right now! They exhaust me sometimes, but they are such a distraction and amusement to us! I am so proud of them and thankful for them! I have been so worried that they aren't getting all that they need with all that we have to do with Gavin. I've also been worried that they will be negatively impacted by all of this. This hospitalization turned out to be a blessing for me because one of Gavin's nurses grew up with a severely special needs sister. He was very helpful to us by sharing his feelings about growing up with a sibling who required alot like Gavin does. I asked him how it has affected his life. He just smiled and thought about it a minute, then he said that "the benefits far outweigh the negatives!" He said that he wouldn't change his past and that he is a lot more compassionate and has learned so much from the experience! I could definately tell this about him! He was one of the most helpful nurses that we have had for Gavin and he had such a kindness about him! So, though this hospitalization was quite an inconvenience, it helped me tremendously in this aspect!
Please keep those prayers going for Gavin and our family! Also, please don't be afraid to talk to me about Gavin just because I don't want to answer a lot of questions. I still need your support and friendship, as it is quite a lonely feeling living like we've had to the last year. I really appreciate all of you!
Love, Alicia and Family