A much needed update, I will try to do better!
Some things have gotten better, others worse. He is not having anymore grand mals during the night, early morning, unless he stays up too late then he has a grand mal. No late nights for him! He is back to having 6-10 drops throughout the day. He had one while waiting for an Easter egg hunt to start and hit his head on the road, he hit a rock and it cut his head. A couple other times he has scrapped his back on something. The poor, little, boys back is going to have so many scars. He needs to live in a bubble. When we leave the house he'll either need to wear a helmet again or a hat, unless someone is holding onto him. I've decided that i hate drop seizures just as much as grand mals! Grand mals are scarier hard to watch but the drops injury him and affect normal activities. On March 31st he had a doctors appointment to see what we need to do next to see if we can get these drops under control more. We are going to add depakote, we've tried to stay away from this med because of possible side effects (liver and bone marrow damage) but from here on out anything else we try has side effects :( We've tried all the other ones that don't. We haven't started it yet, needing to adjust other meds first. Please keep him your prayers that he doesn't get and side effects from it. He will get blood draws ever 6 months to monitor everything. He is going to be one tough cookie by the time he is 8! He already swallows 7 pills like a pro (not all at once but 2-3 at a time!) and is gonna have to learn to like needles, unfortunately.
We have noticed problems with his focus and concentration, we wondered if it was ADD or ADHD but felt it was more than that. You don't notice it unless your asking him something or really paying attention. We asked the doctor and she did a couple little tests on him, thankfully he did what we've been seeing. She said she doesn't think it's add either she thinks (about 90% sure) that they are little seizures kinda like absence seizures (staring off into space) but not full on she called them "spells". The seizures are interrupting what the brain is supposed to normally do. She's hoping meds will get control of those too. We are dealing with some brain damage caused from so many seizures and the seizures themself. His speech has also been affected when saying a sentence he slurs all his words together except the last word it is clear as can be. We are looking into options to get him some help with this.
My heart breaks for my little boy!!! It's really hard when I think of everything all together! It's hard for us to accept and realize he has a disability more than just seizures. He was a perfect healthy baby and toddler (minus irregular heart beats right after being born, he was fine at a 2 week EKG) he was growing and developing perfectly until 2.5 years old and things seem like they have gone down hill from there. :( Sometimes I think it would've been easy quicker to accept if he had been born with problems but for whatever reasons, unknown to me, things have happened like this.
We are also struggling with knowing what to do and getting him in the right place with school. It's a fight getting him the right help that he needs. We're working with the school district and trying to explain everything the best that we can over the phone or via email. One day I talked to 6 different people trying to get in touch with the right person to help us! He will most likely be taking kindergarten again or put in a specialty class, not real sure at this point. I do a little but of school here and there nothing formal but it's been really hard with his focus. As his mom it's hard to have the patience and I don't have the know how on how to help him with his special needs. ( I know why I've been putting this post on hold, I can't stop crying as I type this!!!) It frustrates me to not be able to help him! I need to do more research on how to help him or take classes or something! Hopefully we can get schooling figured out and that will help both of us!
Last night we came across Lennox Gastaut Sydrome, I've seen it before on epilepsy websites but no doctor has ever brought it up so just figured he didn't have it. With new struggles that are showing up and more and more different types of seizures, it's a possibility he may have this. We have just been talking to the doctor today about it so we will see what needs to be done to rule out or confirm it. It would be nice to have an explanation for all this and maybe qualify him for more help but at the same time I don't want him to have a syndrome. I haven't done much research on this but what I read last night it is something that he would most likely have for the rest of his life.
Enough sad stuff! When we went down to his appointment it was at 12:40 and after it we had some places to go to while we were down in the slc area so ended up spending the whole day down there with just us and Teydon. It's much easier to leave Boden with a sitter and he's not nearly as bored. It was nice to spend time with just Teydon! Despite his challenges and set backs he still finds a way to put a smile on his face, to have fun, eat a huge hamburger, and put a smile on our faces! Dan and I both had the same feelings about our day and cherish the time we have with him and both our boys!
Life is a struggle and hard but it also has so many many blessings also! Life is good, we have each other and so many other amazing people!
