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.