After his ABR and Brielle's ABR, I sat Brayden down and showed him the results. I told him that he was losing and would lose his hearing. He said, No! I don't want to." I told him it's not something we have control over. For whatever reason, this is happening. I guess I was surprised that he didn't seem to know he was losing his hearing or that he will have a complete loss.
I asked him about attending Bryce's school. Again, I was surprised. I thought he would feel uncomfortable with his changes but he actually wants to continue at his school. Matt made a good point. He said with all the changes that are happening, he's not so sure he welcomes more. True. He did say maybe he could go to Bryce's school on Mondays and Blackshear the rest of the time. Hahahaha...I told him it didn't work like that.
I've emailed his teachers to ask if they've noticed a change. I've noticed the loss is progressing and they have as well. I asked his language arts teacher if we can sign...finger spell his spelling words as an additional spelling word option. Truly, he has great teachers. She's good with it. I can understand why Brayden doesn't want to change schools and teachers. He has some good ones. He's been there since Kindergarten and that's almost a home away from home.
I'm glad I talked to him because I've been pushing to get him over to the other school. In my opinion, it would be better for him to start learning more sign language as he undergoes the hearing loss.It would be better for him to get adjusted. He doesn't see it that way. The message I got was he's happy and comfortable at school. (I talked to the AP and she said she checks on him often and he seems very happy.)
The school nurse is amazing. She has stayed on top of everything and helps Brayden daily with his hearing aids. She called me with concern because he didn't pass his vision test with his glasses on. I was surprised because we just saw the opthamologist a few weeks ago and she said his prescription was right on and if anything, he could wear them more casually. I wondered if maybe they were dirty. I cleaned them and she rechecked and sure enough, that had been the problem.
It's hard to see him change but we do know the Lord is in charge. We do know that everything happens for a reason. We do know we are and will grow from these changes. I've thought about how there's the possibility (if the cochlear doesn't work) that he might never hear my voice (or anyone else's voice) again. Then, I take comfort in knowing that he will still be able to feel the spirit. That's a voice, a still small voice, that he can hear.
Saturday, November 8, 2014
More Good News
Brenlee had her ABR on Thursday. We wanted to do it without sedation and wouldn't you know, she cooperated. It took a little time but not much. The audiologist commented on how she's a good baby. Yes, not sure if that will change, but I'll enjoy and appreciate it now.
The audiologist did one ear at a time and I was relieved that she, too, has "normal" hearing. We hope that doesn't change but we'll keep a watch on it. This particular audiologist has a niece with mitochondria disease. She's almost three and isn't walking. Genetics came back with nothing (as we've been warned could be the case for us) but they feel it's Mitochondrial.
The audiologist did one ear at a time and I was relieved that she, too, has "normal" hearing. We hope that doesn't change but we'll keep a watch on it. This particular audiologist has a niece with mitochondria disease. She's almost three and isn't walking. Genetics came back with nothing (as we've been warned could be the case for us) but they feel it's Mitochondrial.
Thursday, November 6, 2014
Good News
Yesterday we got some good news. The audiologist said she was so glad it was good news. She really didn't want to give us anymore bad news. Brielle had her ABR down at the West Campus. She's such a silly, stubborn girl. She's right on the weight line for medicine vs an IV. So, they gave her the max amount of medicine. We kept her up late the night before and brought her "sleepy".
Matt drove her over while I saw the kids off to school and dropped Brenlee off with a friend. Brielle was waiting for me to get there before she wanted to go to sleep. She kept talking and we kept trying to get her to sleep. She's so stubborn and boy does it show. :) Finally, we got her to lay still and sleep.
.
What a relief when we were handed a "normal" hearing printout. We were beginning to wonder if the machine was broken. No, sadly enough, both boys just aren't hearing like they should be.
Brielle was a little tipsy from her medicine so she got to use a small wheelchair.
She loved getting a bear, a popsicle and a slushie. She didn't want to change into the hospital clothes they provided her but she did like the yellow socks and wanted to wear them. We were proud of her because the medicine tasted "yucky" but she took it anyway.
Matt drove her over while I saw the kids off to school and dropped Brenlee off with a friend. Brielle was waiting for me to get there before she wanted to go to sleep. She kept talking and we kept trying to get her to sleep. She's so stubborn and boy does it show. :) Finally, we got her to lay still and sleep.
.
What a relief when we were handed a "normal" hearing printout. We were beginning to wonder if the machine was broken. No, sadly enough, both boys just aren't hearing like they should be.
Brielle was a little tipsy from her medicine so she got to use a small wheelchair.
She loved getting a bear, a popsicle and a slushie. She didn't want to change into the hospital clothes they provided her but she did like the yellow socks and wanted to wear them. We were proud of her because the medicine tasted "yucky" but she took it anyway.
Tuesday, November 4, 2014
I Shouldn't Have Put On Eyeliner Yesterday
Yesterday Brayden had his first ABR. He's big enough that he has to be sedated through general anesthesia. I went to Brielle's awards ceremony while Matt took him to the West Campus.
Brayden's test results were a bit of a shock for us. I'm not sure how else to describe it but to say my heart hurt. I shouldn't have put on eyeliner yesterday. His results look very much like Bryce. There's not replicable response observed for the ABR. Like Bryce, he slept for an hour with no activity from sound input. I guess I was hoping for something different. How is he still hearing? Well, the ASSR test (it tests higher frequencies) detected 3 sounds in his right ear and 1 in his left. So, how is he different from Bryce? Bryce can detect 1 sound in his left ear. Brayden has 3 more frequencies and that's it. No wonder he says "what?" so much.
I went through a grieving phase for Bryce and I feel it all over again for Brayden. He's older which is a blessing academically but harder in many ways. He'll most likely have to change schools, leave behind the friends, teachers, and school he knows and start over. It's not like moving from one school to another. He will have to continue to learn a knew language. His primary language will change. :(
Brielle has an ABR on Wednesday and Brenlee has one on Thursday. I'm really anxious to see what the results will be. Will this just effect the boys or will it be all the kids?
I think it's hard watching your child struggle, especially when things used to be okay. They used to hear just fine or at least a whole lot better than they do now. Brielle was sick on Sunday so I stayed home with her. Brayden bore his testimony and Matt used a voice recorder on his phone and sent it to me. I thought that was so thoughtful of him to do. As a mother, it was so sweet to hear Brayden's little voice sharing his testimony.
It's so hard to accept these new changes. I guess there's a tendency to compare your children to what they used to have and it's hard. Last night I was working with Brayden on his cub scouts and the thing that stood out to me was to do YOUR best, the best YOU can do. Not someone else's best. So, we've got to focus on doing their best. We've got to focus on not just enduring these trials but enduring them well. It's hard. It's really hard but we can and have been doing hard things!!!
Brayden's test results were a bit of a shock for us. I'm not sure how else to describe it but to say my heart hurt. I shouldn't have put on eyeliner yesterday. His results look very much like Bryce. There's not replicable response observed for the ABR. Like Bryce, he slept for an hour with no activity from sound input. I guess I was hoping for something different. How is he still hearing? Well, the ASSR test (it tests higher frequencies) detected 3 sounds in his right ear and 1 in his left. So, how is he different from Bryce? Bryce can detect 1 sound in his left ear. Brayden has 3 more frequencies and that's it. No wonder he says "what?" so much.
I went through a grieving phase for Bryce and I feel it all over again for Brayden. He's older which is a blessing academically but harder in many ways. He'll most likely have to change schools, leave behind the friends, teachers, and school he knows and start over. It's not like moving from one school to another. He will have to continue to learn a knew language. His primary language will change. :(
Brielle has an ABR on Wednesday and Brenlee has one on Thursday. I'm really anxious to see what the results will be. Will this just effect the boys or will it be all the kids?
I think it's hard watching your child struggle, especially when things used to be okay. They used to hear just fine or at least a whole lot better than they do now. Brielle was sick on Sunday so I stayed home with her. Brayden bore his testimony and Matt used a voice recorder on his phone and sent it to me. I thought that was so thoughtful of him to do. As a mother, it was so sweet to hear Brayden's little voice sharing his testimony.
It's so hard to accept these new changes. I guess there's a tendency to compare your children to what they used to have and it's hard. Last night I was working with Brayden on his cub scouts and the thing that stood out to me was to do YOUR best, the best YOU can do. Not someone else's best. So, we've got to focus on doing their best. We've got to focus on not just enduring these trials but enduring them well. It's hard. It's really hard but we can and have been doing hard things!!!
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