Gavin got really frustrated while we at the Cleveland Clinic today. But considering everything he did ok. Here's a pic of him waiting.......

We just got back and are about to go into another appointment but I figured I would share while I can. The appointment was very long and we had several major meltdowns. The doctor suspects a basil ganglia defect. He is scheduling OR time at the Cleveland Clinic main campus in order to do a lumbar puncture. They will have to put Gavin completely under and manage his air way so that's a big deal. Still no med changes allowed for now. He said that "Gavin, for some reason, is predesposed to this type of movement disorder". To make matters worse Gavin now knows he's getting a lumbar puncture. So you can imagine the kind of fun we have been having........We also learned that Gavin has "profound" mental health issues.…

I was working on a new ROM release last night after Lizze went to bed. Elliott woke up around 9:30pm and was up till about 1:30am. Then I got him to sleep again and he was back up a few hours later. He has  nightmares most nights due in part (or honestly just because of) the things Gavin says to him. Elliott worships Gavin and believes everything that comes out of Gavin's mouth. Gavin says things that are grossly inappropriate to him and that result in nightmares. No matter how many times we tell Gavin t stop it he just can't seem to help himself. So these nights are long and happen quiet often.

We finally get to see the movement disorder specialist tomorrow at the Cleveland Clinic.. Can't get he van into the shop till next week so hopefully we won't having any problems on the drive there and back.  This has been such a long time coming. Gavin is really struggling anymore. He has a really tough time even holding things in his hands without dropping them. I know it's frustrating for us because of the MANY messes he makes but I can't imagine how it feels to be him right now. I can't imagine losing control over my body. I really hope we can put an end to this for him as soon as possible. Please keep him in your prayers tomorrow. Also pray the spinal tap isn't required either.

I went into the kitchen a little while ago and Lizze in on the floor holding her head. She has been getting sharp pain in the center of her head.  This is the 3rd time this has happened in the past few days. We get into the specialist on Friday. This pain goes above and beyond her "normal" migraines. I basically had to carry her back to the living room. She has had all the MRI's and aside from the cyst at the base of her brain there in't that shows up. She doesn't respond to medications either. I am growing more and more concerned. I wish I could take this all away.....

The kids are driving me crazy. They have only been home for about 2 hours but it has been 2 hours of screaming. I just want some quiet. Perhaps this is why I like to stay up later. It's the only time I get to exist without someone screaming......... I don't drink and I don't like to drink but damn, it's looking better and better.......

We are still paying a very hefty price for the holiday's.. The boys are still completely over stimulated. Gavin seems incapable of thinking for himself at all. Which may actually be part of the regressive cycle we stated a little while ago. He also has an explosive temper that he doesn't always do a good job of managing. Gavin is literally driving me insane. Elliott cries over everything. He has to have 10 of everything and compares what he get to what everyone else gets. He is super whiny and just never seems to quit.... Emmett is completely out of control. He is literally going to push me over the edge. He is going around the house throwing anything he can get can get his little hands on. He's like…

Tuesday is a very busy day for us. The kids are back in school and we are back to the Cleveland Clinic with Gavin. Gavin will see the movement disorder specialist Tuesday afternoon. We have been waiting for this appointment since last summer when these problems began. As you may remember Gavin spent a lost of time in the Cleveland Clinic Pediatric Hospital and Akron Children's Hospital. He can not have his medications changed in any way until we get into to see this specialist. Needless to say Gavin has been struggling since. He needs his medications almost constantly tweaked because of the way his body metabolizes medications. Life has not been easy for anyone, including Gavin. Hopefully we will get some answers that result in us being able to medicate him…