Joey had some testing this last week. The testing was for his swallow. He has been struggling with choking and gagging on food. The great news... as it should have felt... he isn't aspirating or intolerant of thin liquids... but the heart breaking news for us as a family is what they saw as the test continued. They saw Joey fatiguing as he ate. If you'll recall what I shared about Mito, it's all about life sustaining energy...
Not too long ago, his metabolic doctor said to us that Joey is declining. His muscle mass is less and his tone is decreasing. This is happening because of the myopathy, the disease of his muscle, which is making his muscle not grow as they should. The reality is, Joey's fatiguing because the energy he so desperately needs to do normal things isn't there. Eating is so tiring to him that it's causing him to choke. His energy is too low for him to properly swallow and get the food safely down.
I walked out of this test and I crumbled. I normally can restrain my mommy melt down until I get in the van, but not this day. I've seen it coming... I've felt we were in for some changes... but I was hoping with all my might it was just me being overly anxious!
The therapist working with him wrote in the study, no speech therapy needed. She recognized this as a progression of Mito and no amount of therapy at this point can help. She said he needs to have short times of sitting at the table to eat and when he's choking, we are to stop all oral feeds, eating/drinking alike, and move to tube feeds for him. It hurts me as a mom to see we are to this point because he cries because he wants to eat the food but he realizes he can't swallow it. He wants to eat. It upsets him he can't. I have to confess, I cry with him! This disease makes me so angry some days! I hate it with all my might! But I can't change it... I can only help him through these changes and try to find positive ways to help him cope.
In all of this, we have realized, we are going to have to get more strict about using his wheel chair. Joey's Mito doc said he needs it and we are seeing that the reality of it is... he does. It was confirmed in my mind today that this is our reality...
We went to church and Jeff carried Joey too and from the car and even up the stairs to his class room. Just being on foot for what little bit he was, Joey couldn't eat lunch today. He couldn't get anything down we put in front of him except scrambled eggs. He was pale and looked so tired. It made my mom cry to see it. No kid should have to chose between playing with friends or having the energy to eat his lunch. It isn't fair.
This is where the sense of urgency comes in. This picture below is of Joey in his wheel chair. This wheel chair was made with tilt ability so he can sleep in it (He does OFTEN) and also, it was set up to protect him if he has a seizure.
This picture is of our van... The wheel chair you see is Abby's. The bags around it are mediations, meals for the day, bags with daily necessities and then JJ's airway clearance vest. The green and blue seating systems on top are the seats to Joey's and JJ's wheel chair. Underneath the seating systems behind all of this are the frames to the boys wheel chairs. In order to use Joey's chair (And believe me! We have tried every position possible and this is the only way we can get it all to fit), we have to pull every bit of this out... put his chair together and then replace it all to the van. Then, do it all again to put the chair back in the van. This van doesn't work for us! It's a disaster! We need a van and we need one soon! At this point, we have chosen to take JJ's wheel chair out of the van as he doesn't need his as often. We put it in for Riley days but in order for Joey to use his on a daily basis, we have to do this. JJ is at an age he can be carried, but he has the same kind of chair as Joey's. So, it feels like in a sense, we are robbing Peter to pay Paul. Please help us with this! I don't often express urgency but we are needing to move forward with this! We really need help from all of you! It's going to take a village to make this van happen!
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