Kid Hero

The other day a friend called and told me I'm her hero. She talked to me for a while and I really appreciated her phone call. She let me know she had been through a rough time in life and some things she did that helped. She also let me know she was a phone call away if she could help with things like laundry or grabbing something at the store etc. I'm thankful she called and it really meant a lot to me.

Later that day, Bryce signed something to me and I wasn't understanding. At first I thought he was wanting his CI device. No! Then I finally understood, he wanted a cape. The outfit he was wearing didn't have the velcro tag for a cape. I debated whether to have him change shirts or to pin it on his shirt. He chose the superman cape and I pinned it on his shirt.

I thought about heroes and I decided that Bryce was and is a hero. When the district's physical therapist showed up with a walker and a gait trainer, I felt a tinge of pain, a sadness, that he needed something to support his walking. Bryce on the other hand lit up like it was Christmas. He was thrilled and couldn't wait to give it a go. It was a toy, something fun that he wanted to try. His smile and his attitude left an impression on me.

I was focused on the sadness and grief of what he lost. Bryce was thankful for the equipment that gave him mobility and independence. I'm learning that we don't focus on what we don't have or what we've lost; we focus on the blessings.  I'm not the hero but I'm learning from one.

MRI Date

FINALLY got an MRI date for Bryce. AUGUST 24TH. Please pray we get some answers.The hearing loss appears to be a symptom of something bigger. We're truly at a loss for what to do as he declines ...and Brayden.

Bryce's Walker

The school's physical therapist came by yesterday with a walker for Bryce to try out. His eyes lit up and he started smiling. He's been smiling ever since. He has some independence restored. Bless his heart. My heart aches as I wish he didn't need it and were able to run around and do things a four year old should be doing. Some day....some day he'll have that glorious body. Until then, we deal with what this life deals to us.

She also brought me some chocolate. Bless her! As you can see, I could definitely use it and ate it right up. If I had a bag for every time I needed it, well, it wouldn't be good. Stress is a norm for me. There's no way around it. The conference I went to talked about how you will most likely become very sick in the future. We'll see what stats know...but there's not a lot I can do.

Speech Therapy

I know we ask for a lot of prayers, but we still need them.

A few weeks ago, I had this dream that the center for hearing and speech basically told me they couldn't help us anymore.

Today at Bryces appointment, it was almost haunting as the therapist said something like that. Sometimes I feel like I'm spinning my wheels with Bryce. Well, she told me I could take a break if I wanted, she's flexible. They don't really know if they can help him.

She encouraged me to get an mri for Bryce in hopes to determine the cause of his ataxia.she was very open and honest. I appreciate it but it made me sick to my stomach. Brayden's hearing is getting worse as well. She said there's auditory neuropathy and then there's peripheral neuropathy. It sounds like it's a bigger issue, which sounds like it might be the case.

It's hard to have talks like this. Painful. The hard part was when she talked about ataxia progressed could hurt fine motor skills. Sign language could some day be useless. It continues to be hard watching my boys be attacked by something and not even know what.

Please pray the mri will be helpful. They'll have to take out his magnets and replace them.

Ataxia Diagnosis

Bryce's balance is officially ataxia. We don't know the cause. It might be the genetic thing that's happening that they haven't figured it. Bryce struggles to walk but doesn't give up. It is heartbreaking to see him stop trying to chase the dogs b/c he just falls. He used to go get them out of their cages all the time. He stopped. He tries to play in the backyard but just falls down a lot. When we met with the neurologist, we went to a gym. He tried to hold and shoot a basketball but just kept falling down. 

 Brayden has some slight, noticeable balance changes. If his condition is like Bryce (and it appears to be), he too could one day struggle to walk. 

So now, I have to remember to practice what I preach to the kids... Life isn't fair!

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.

Hearing Loss isn't a Crutch

When we learned of Brayden's hearing loss at the end of the last school year (First grade), we were shocked. Well, that's when it was noticed by his teacher. He started second grade and I told his teacher we thought he was attention seeking. I had to eat my words. He was diagnosed with auditory neuropathy, just like Bryce. 

We thought his grades would decline through the year. It was an awful feeling to know that you would have to watch your child "fail". Well, he didn't fail. He's a bright kid and he did well. He maintained A's all year. I still can't believe it. 

At one point, I pushed to get him moved to the other district in deaf ed. They had a hard time doing that because he did so well in the classroom. They couldn't justify the move. They did give him an itinerant teacher. An itinerant is a helper that's familiar with hearing loss and helps him advocate by teaching him how to use his equipment and helps him keep the teachers informed about how well he's understanding/hearing.

I am so proud of him! I know this is a difficult time of life that's had both a physical and social impact. In our family, we can do hard things!                                                                                            

  He got a pikachu that said "pikachu, we love you! We're proud of you!