Have You Ever Loved Someone So Much It Hurt?

Well, I have and I do. It definitely hurts. They say that when you have a child your heart goes walking around on the outside of your body. I'd say "they" are right.

A little over a year ago, our life changed drastically. We added a sweet, baby girl but that's not the only change that happened. Bryce lost his hearing. It was hard to go through those changes and it must have been scary for him. We had no idea it was happening (progressively) till it was gone.

A lot of emotion went into this life change. You hurt for your child. We felt reassured as he found happiness despite his challenges. His laugh makes me so happy.

If only hearing loss were all that were changing...

As we went through the cochlear implant process, we learned he had optic atrophy. What? Really? What does that mean? Well, he could have progressive vision loss too.

Then he had the balance issue. The neurologist spent about an hour with us having him walk up and down the hall and run. He was puzzled because he didn't seem to have ataxia but there were definite balance issues.

We went on orthodics because he was pronating his feet. He received foot braces to help correct the issue.

We saw a GI doctor because of his inconsistent stools. Everything checked out normal. There's no rhyme or reason for why sometimes it's loose and sometimes it's less loose. We started a gluten free and dairy free diet. We continue this diet with him although it hasn't made a difference. We're hopeful. Actually, today when we were called back I thought he had peanut butter on the stroller. It wasn't peanut butter. I was thankful I had a change of clothes, wipes and a diaper.

We were told that after the second implant surgery that his balance could be worse. We felt the first day or two was this way and then it seemed to be much like it was before. Then, it seemed to get much worse. Others noticed and pointed this out. We've noticed. He wants a stroller or your hand to hold. He runs over his siblings, steps on your toes, knocks things over but he's not trying to. It's very frustrating but he can't help it. He fell down today in the hallway and I helped him up and hugged him. I wish I could make it stop.

It HURTS to see him struggle to walk, run into things and fall down so much. Today he had a follow up with the otolarnyngologist. I asked him about his balance. Is that "normal" for hearing loss. I guess I was hoping to hear it was because so many people explain it away with it being connected to his hearing loss. It's not normal. He said vision could contribute to it. He asked more about Wolfram. I guess they found a mutation but because it doesn't present itself in Matt, they can't say that's what they have for sure. Somehow, his system is very much affected by whatever is going on.

I told him physical therapy is hard to get into. There's a wait list for just an evaluation. He recommended having the eval at whichever campus was the soonest and then transferring. What a brilliant idea! I let him know that we're starting to see balance issues with Brayden as well. He recommended physical therapy three times a week. He mentioned ataxia to his nurse.

It was the knife. The neurologist said he didn't have it a year ago and now...now he does. Whatever they have (we still don't even know and we're waiting on another round of genetic testing to come back), it seems degenerative. We do remember the neurologist asking about slobbering. Bryce seems more slobbery too.

It's hard to watch life change for your kids and not know what's really happening or if it'll happen to all of them. There's so many unknowns. We may never get answers.

The thought of adding physical therapy three times a week is just a bit overwhelming. We spend four hours a week at speech and audiology. Half of that time is just traveling.If the boys really do have ataxia, it can affect their speech. I wish I knew if it's counterproductive to go.

The blessing today happened when I met a Mom that has a daughter in Bryce's class at school. She has a known cause for her daughter's hearing loss plus. It was pure connection and sometimes that's what gets you through a rough day.