So, the MRI came back normal! So RELIEVED when I was told this! I had been worried and wasnt even to sleep at night because I was just staying up thinking of all the bad things as to why the EEG could have came back abnormal.
WHATS NEXT: We have to do the 3 day hospital stay at CHOC. It was scheduled for October but I decided to reschedule to November because it was just too close to the MRI and both the EEG and MRI were pretty traumatizing for him. I wanted a little space in between. I wish my little man didnt have to go through all this. I have a feeling this hospital stay is going to be a waste of time. I am really nervous and worried about it. He has to be stuck in a bed for 3 days, with an iv, and wires all over. I KNOW he wont cooperate..but we are still going to try. I just cant wait till all this is over and we figure out what is going on.
Meanwhile, it is really hard to get a hold of D's neurologist and quite frankly I do not like the guy. He is very rude and doesnt act like he has experience with special needs kids and families. ALSO, I have been trying since August to book a follow up but guess what? He is booked up till Jan and his pedi wanted him to be seen in Oct. So, that obviously isnt happening. His doctor put in a referral for him to see a specialist at UCI in Orange. Hopefully this person will be more helpful than the other guy at CHOC.
All this stuff is really getting to Devyn. I feel like he is going through a major regression stage. His behaviors are going down hill...he is scared of a lot of things. Wont try new things most of the time. Has major meltdowns when going to new places or places he hasnt been to in a long time. It makes life really hard.
On the upside..he has developed more new language. He has actually directed questions towards me. All by himself with no prompting! Pretty amazing. He still cannot hold a conversation though. Only answers questions (sometimes) with a yes or a no.
Other than that we are just tying to get through the holidays. Devyn doesnt really like Halloween too much. I am trying to make it fun. We have done a few projects. We made Halloween candle holders. The kids' painted mason jars and we put tea lights in them. Pretty neat. As for a costume..he hated all the costumes he saw. I thought he would tolerate being a little baseball player...I was wrong! He doesnt like it. I did however, get him to put on the baseball uniform to go to his Halloween play group a few weeks ago. After about 45 minutes of crying and screaming though...Hope he gets in the holiday spirit on Monday! I know it will be hard to get him into his baseball outfit to go to school though. Not sure if he will do that..But, I hope he has fun on Halloween at school though. We are planning to go to Pretend City's ASD Halloween night. So happy they have that available to us. Especially on Halloween. He loves it there. It is basically a children's museum and they are going to do a little trick of treat thing there! I wanted to take them to a few houses afterwards to see if he wants to trick or treat. But, still not too sure about that yet.
Other than all that..just trying to get things ready for the walk. Pretty disappointed with it thus far though. I mean I am excited about it. But, I am just disappointed about the lack of support from family and friends. I have a feeling not many people will show..and I doubt we will reach our goal. I have sent out a lot of emails. What hurts the most is being ignored. I should have expected it though..my family sucks and most of them are in no way supportive. Whatever though..all that matters is MY little family. I am my sons advocate. At least I will be there in support of him..and his little sister and daddy! :)
We are also doing a fundraiser for Team Devyn and Autism Speaks at Ruby's Diner in Irvine next week! Hope people come out to that..I'm not counting on it. But, even a few people will make me happy.
Happy Halloween everyone!!
