Lizze and I brought the boys to a local park today and met up with my Mom and Gavin. The boys hung out with Grandma and Gavin while Lizze and I walked about 2 miles. Afterwards, I spent some time talking with Gavin. It’s so sad because he can’t have more intelligent conversations anymore. I know that sounds mean, but I most certainly don’t mean that as a negative towards him at all. The problem is that cognitively, he’s just not there anymore. The only thing he converses about is Sonic the Hedgehog. His conversation skills have just declined to that point. I truly, truly have no idea what to do or where to go. I’ve talked about needing a Dr. House before and I feel like that would be our best bet. Unfortunately, he’s not real and that is of no help to us. I don’t know how many of you out there, know what it’s like to watch your child slipping away. Even though you do everything that can possibly be done and more, it’s just not enough. It’s an indescribable feeling that I wouldn’t wish on anyone, ever. While we were at the playground this afternoon, my Mom kept Gavin as calm as possible but his heart rate hit the highest is ever been recorded at, almost 170 bpm.
The most he did was sit on a swing and walk around. That was all it took to throw him out of whack and potentially but his life in danger. I hate the fact that he can’t just be a kid. I hate the fact that we have to rob him of his childhood, just to keep him alive. What kind of life is that? I have to call the Cleveland Clinic in the morning and get Gavin in to the neurologist again. We need a better plan and we need one now. I will also call Akron Children’s Hospital again and follow up on the impossible to get into see, mitochondrial specialist. He happens to be the best in the world and so he’s impossible to get an appointment with. Time to give new meaning to squeaky wheel gets the grease. At the same time as all of this is going down, Lizze is having some issues that have earned her a rushed appointment to the Cleveland Clinic as well. She has 3 appointments there in next week or so but that’s her story to tell or at the very least, another post. Right now, I don’t know what to feel. Right now, I don’t know what to do. When life gets all up in your face like this, it’s extremely difficult to focus on anything else. I’m trying to focus on the other two boys and make them a priority, while at the same time, trying to find work, not lose our house or our car and try and keep up with as many of you other obligations as possible. Things are really bad right now and I feel like if I take my focus away from what’s going on with Gavin, Lizze, Elliott and Emmett, everything is going to fall apart or worse. It’s not as easy as just trying to find balance. I’m basically have 10 balls that need to be juggled. I can only juggle 3 balls at a time and so it’s like I have to rotate the other balls in when I can. Unfortunately, as soon as I put any of the balls down, even briefly, things begin to rapidly go down hill. Of those 10 balls that need juggled, 4 of them are the most important and really can’t be rotated out. It’s a lose lose situation, anyway you look at it and it sucks. I don’t know if there exists a word that can describe how I feel. If I had to pick one word that I know of, it would have to be helpless. I feel incredibly helpless.
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Prayers for Gavin.. that’s scary with his heart rate elevating so easily. How frustrating! We just found out both our PANDAS kiddos are now developing thyroid antibodies, so they are also on there way to thyroid disease. It seems the problems never end. I hope you find a Dr. House or a solution to this.
My heart goes out to you -dont know what else to say -gutting and so hard for you .
Rob and Lizzie. I hope and pray that you will get answers for Gavin. There must be a Doctor out there who can help you find all the answers to help him. Know that many of us in the world are thinking and praying for you.
Is Gavin himself aware of his declining conversation/thinking skills? If I noticed something like that happening in me for no apparent reason, I’d be scared to death.