Finn has been so busy this summer..between all of his therapies, school, and play dates, and traveling...I haven't been able to update and fill everyone in on the EXCITING NEWS!!!
Finn has been granted a WISH through a fabulous foundation called Wishes Can Happen. They are sending us on an all expense paid trip to Disneyworld!!! Included in this wish are passes to ALL of the Disney parks and Universal Studios. We will be staying in this amazing village called Give Kids the World. It is apparently pretty awesome, and is equipped for all adaptive equipment. Ethan and I are so excited and so grateful for this opportunity. I have been saying for the past year that I want to take Finn to Disney because I hear that they are very good with special needs kids, but there would be no way Ethan and I could afford to take Finn anytime soon, so to be given this chance is just amazing and we can not wait! We are going at the end of September/early October.
Finn has been seeing a lot of specialists lately...We just saw Neurology bc I had a suspicion that Finn was having seizures again. The feeding clinic put Finn on an antihistamine to make him hungry, which will make him eat more and hopefully put on some weight. He was on this drug for a month, and it was working...Finn became a little piggy and he actually gained over a pound in 3 weeks. It was great....but then I started noticing Finn do some weird things. He would do something weird with his eyes...every instance was quick but I knew something was not right. The feeding clinic told me there was a small chance that this antihistamine could affect the topamax, but not likely. Well leave it to Finn to prove everyone wrong. I pulled the drug and kept an eye on him. Seizures are so hard to spot bc they can manifest in so many different ways. Finn had infantile spasms which are easy for me to spot, and I am happy to say that he did not have any of those...but he would just kind of zone out for a few seconds. I couldn't bring him back to me no matter what I did. Then he would come back and act like nothing happened. These episodes could not be predicted, they did not happen every day, they didn't come in a cluster, and they only lasted maybe 15-30 seconds. So Neurology decided to up his topamax. So far so good...
Finn has always been a terrible sleeper. Ever since he has been born, sleep has been such a struggle for him/us. All the experts kept telling me 'you just need to give him more time...he'll get the hang out it' 'you are babying him...you need to be more disciplined' blah blah blah. I am exhausted...Finn is exhausted. Its been three years and I can't take it anymore! So when we were at Neurology, I discussed with his doctor that sleep is not getting better...it is actually getting worse! Finn has terrible muscle spasms/startles that wake him up! His Doc said 'well let me talk to a colleague of mine and I will call you in a few days to see what he suggests' and I told her I was not leaving the office until she wrote him a script for something to help him sleep. We can not keep going on like this! Finn needs sleep!! It's not healthy for a child to keep waking up in the middle of the night...never getting the healthy REM sleep that we all require!! So his Doc leaves the room, asks a colleague of hers that is a neurologist who specializes in body movement and sleep...which is right up Finn's ally...why haven't we ever seen this doc before!?!? So they come to talk to me about putting Finn on a small dose of Baclofen. I immediately have serious doubts...Baclofen is a medicine that helps kiddos who have high tone issues, like Finn, however the reason why Finn cannot be on this med is because it can cause seizures....and since he has a history of seizures Ethan and I, and the doctors, decided that Botox would be a great option for all of Finn's tone issues....So when I hear these docs wanna put him on Baclofen to help with sleep I have serious concerns. Their plan was to put Finn on .5ml only at night. That is like such a super small dose. It will hopefully be a small enough dose to not affect his seizure medications, but large enough to help calm his muscles when he sleeps. When the doc sees how hesitant I am about this plan she looks at me and says 'you need to try something. Lack of sleep can cause seizures, and this is such a small dose of Baclofen that the risk is minimal, plus we upped his Topamax.' So I went ahead and agreed to try this med. He has been on it for about 2 weeks now and his sleep has improved. He is not having his twitches/startles when he sleeps anymore. He has been doing like 5 hour stretches in his bed by himself, which is amazing! So far this is working, and I hope everything keeps going well!!
