My Dream about my ASL Talk

I've had dreams about giving talks in church before but the one last night was a first. I was at the branch (although it looked like my ward building) and started to give my talk. Someone closed the curtains. I'm not sure why there were curtains in the chapel but I knew it would be a problem. I mean, if the people can't see the signing, they wouldn't understand.

Then a handful of random people (I guess you could call them a mob) showed up and started shouting things. I wasn't sure what to do so I got off the stand and asked the branch president. He said to close your eyes and sing a church song in your head. It was so crazy and so real.

Sonja Cunningham Anderson From a psychology perspective that dream makes perfect sense to me. The curtains represent your fear they won't understand you, the mob represent being judged for not getting the signing right, the counsel is your answer from Heavenly Father in how to handle those two fears. I think you just had an answer in dream form.

Connecting the Dots

Bryce had speech therapy. Brenlee has been getting more mobile and I've been wondering what to do with her. I hate to get a sitter every week just for speech. It'll get more intense when Brayden starts speech too. The center for hearing and speech is awesome. The therapist said she could sit in the high chair. Bryce really loosened up (became more vocal) when this happened.

Bryce's device was turned on in January and he had "newborn hearing". He's now about at a 1 year old....right with Brenlee. They imitate sounds. It's so fun to see and hear Bryce imitate. He did this at dinner the other night when Brenlee babbled some tune. We KNEW he heard it because he babbled the same tune.

I'm not sure if the pattern will continue but maybe within a year, (again, assuming the pattern continues) he will be caught up in his ability to hear.

I was talking to a friend and she said maybe you didn't have Brenlee when you wanted so she could be here for Bryce. I hadn't connected the dots but it was a testimony to me that Heavenly Father knows everything. He knows what's best for us. I wanted her a year earlier but she came about the time everything changed. What seemed so hard at first, turned out to be a blessing. I remember questioning the Lord's timing on Bryce's hearing loss. Really? After I have a new baby? It was a struggle but now it's a blessing. 

Genetics Follow Up

We had our genetics appointment on Thursday. We asked questions and wanted to know a prognosis. They really don't know b/c the testing they did yielded zero answers. Dr. C suggested an Xome test that would dig a little deeper. We told him all of Bryce's "issues (GI, balance, optic atrophy) and he asked about Brayden too. I also inquired to find out if there's a way to know if the girls will also experience the same hearing loss. We really just don't know.

They looked at MRI pictures of Bryce's brain to see if maybe something wasn't developed. Everything looks normal. He's puzzled with Bryce's balance issues. They recommended that although he has outgrown his breath holding spells, we continue to see a neurologist yearly.

They asked permission to video Bryce walking up and down the hall. He said he'll meet with 10 other doctors and maybe one of them will have an idea he hasn't explored.

 

Brayden's Postponed Surgery

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A bit of an interesting day as we prepared for Brayden's surgery and then it was rescheduled. Oh banana! The banana really was an issue. When Bryce had his surgery, we were very careful to make sure he didn't eat or drink. I reminded Brayden this morning but then I made a pretty big mistake. I asked my fasting 8 year old to help Brenlee with her banana. Innocently, he took a small bite "because I was so hungry" and then he remembered. I can completely see it happening. I forget on fast Sundays. What was I thinking? I wasn't and I was upset at first but then realized I had made the mistake. 

The surgeon could perform the surgery but the audiologist had to leave by 3pm so it just wasn't going to happen today.So, we are rescheduled (April 24th) but hoping for an earlier spot (it's almost a month out). Well, that was one date with Brayden that we will probably never forget. We had some wii time together. We went home and watched the mini minion movie "BANANA" and got a good laugh out of our crazy day.

Surgery Blessing

Matt prepared to give Brayden a blessing for his surgery. Brayden was sitting on a barstool. Bryce started having a tantrum. He wanted on a barstool and he wanted a blessing too. So, we pulled one over for him. Then Brielle wanted a barstool and a blessing.

I'm not sure Brayden recognizes his important role as the eldest child. He sets an example (for better or worse) for the other children. It's hard to see him undergo these changes and become "deafened" but we know the Lord is the details of our lives and the changes.

 

Brayden shared his testimony today at the deaf branch. When he spoke it, he had an interpreter that signed for the congregation. Afterwards, a brother came up and asked him his name (signed it) and then asked if he's deaf or hearing. I explained that he's hearing but he's losing his hearing. He has complex language but it's slipping away from him. His surgery is tomorrow and we're hopeful that it will yield good results for him. While the school is set on his status as an oral student, we have every intention of learning ASL. It's a part of him. It's a part of us.

I sat in sacrament today reflecting on this last year. What hard challenges we've faced! What blessings we've received! I have specific experiences where the Lord, through others, showed me, "I know....I know...." Heavenly Father has also blessed us and He too understands. It's hard to see your kids struggle. He knows this all too well for each one of us and even for the Savior. He allowed Him to be crucified and it must have been really, really hard.

I have such a testimony of Heavenly Father's love for us. He has love for the one. I ran into a friend from the Single's Ward days and shared the experiences of our family from the last year. He said, "you still have a smile on your face. You look great." There have been some very hard days. There have been some very lonely days, exhausting ,overwhelmed...not sure how I'm going to make it days. It has been a roller coaster. Somehow when I hit bottom, I've always managed to come back up. Faith and hope have kept me going. There are a few people that have literally been my life support, physically, emotionally and spiritually. The hard thing about emotional exhaustion is it's worse than physical and it can impact you spiritually too. I've been so tired and exhausted that going to church hasn't always come easily. I know it's where I need to be but I also know that knowing and doing are two different things.

A couple of weeks ago, there was a lesson about being yoked to Christ. Often times, I think we think He will take the burden from us. He won't take it away, but He'll share it with us.

My kids have been such examples to me. I have also found examples in the scriptures. I looked to Job a lot. If Job can do it, I can do it too. I'm thankful for tender mercies that keep us keeping on. We have friendships in our ward and now in the branch as well. Our circle has been broadened, our hearts are fuller, our eyes are opened and we truly feel thankful for all the blessings the Lord has given us. He's teaching us about getting out of our comfort zones. He's teaching us that we're all connected, brothers and sisters, in the family of God.

We have found it challenging to have the kids want to go to the ward when we're going to the branch or visa versa. A friend shared an experience with me about Brielle. She said Brielle was such a missionary and told her that she couldn't wait for Sunday so she could go to church and learn more about Jesus. She shared a scripture story that she had learned. I was thankful this friend shared this gem with me. It's always a blessing to hear these experiences. We are blessed to have such good people in our lives.

The Cochlear Implants aren't a "fix". We really won't know till much further how well they will work. We feel blessed to live in a day of technology. CIs have blessed many lives. We also know that neuropathy is "tricky" and unless we get on the other side of the lesion, the results won't be as good as we had hoped. On the other hand, it might work beautifully.

Genetic Testing Results

We got the results back from genetic testing, but unfortunately, they did not yield any answers. Here's what the tests had to say:    (basically, there's a variance on their genes but since Dad isn't deaf or blind, there's no way to determine how this came about.)

Both Brayden and Mr. Nelson carry the change in the WFS1 gene that we found in Bryce. However, since Mr. Nelson does not have hearing loss and optic atrophy like Brayden and Bryce, the lab has changed their interpretation of this result to this:

 “In summary, a conclusive interpretation of the role of the WFS1 variant in this individual and his sibling’s hearing loss and optic atrophy is not possible at this time; however, the available data suggests that this variant is unrelated to their clinical features.”

 Therefore, unfortunately, we do not have a definitive answer for your family. Dr. C*** has offered to meet with you in person to detail the results of all of the testing so far, or we can continue on to try and get insurance to approve whole exome sequencing (WES) to see if there could be any changes in genes we haven’t looked at yet that could explain the hearing loss and optic atrophy.

 WES looks at the important part of all of the genes known to be associated with disease in the genome. The laboratories that do this testing quote a “solve” rate of about 25%, meaning that of all the children with medical problems that have this test, we find an answer for about 25% of them (this means that 75% of cases are left unsolved). However, since Bryce has already had comprehensive testing for mitochondrial diseases and hearing loss genes and were unable to find an answer, I think the likelihood of us finding an answer based on WES is lower than 25%.  The option to proceed with WES or defer to a later time is up to your family. If you elect to defer additional testing to a later date, it is possible additional genes could be discovered in the future that would help “solve” your case. If you elect to proceed with WES at this time, it will require pre-determination through your insurance.

I'm not a scientist, biologist, or geneticist but I feel like there was a genetic weakness that woke up. What woke it up? Who knows. I'm sure some would say it was immunizations. Others maybe GMOs. We may never really know. I am leery of processed foods and the role they could have played. The geneticist (before we even started testing) gave his two scents about gluten and food and how he didn't believe it impacted genetic issues. I disagree with him and believe there was a trigger. It's not something we can undo. We were hoping to find some information to maybe help us in the future but, like many others with neuropathy, testing is a dead end. 

"Where are we going?"

Bryce asked me (over Spring Break), where we were going? He wanted to know if we were going to jump (the AB playdate at Gymboree...he loved it and remembered it). I told him we were going to a friends.

When we got to speech therapy, Payton came to get us. She clapped and Bryce looked at the other people by him. He's hearing sounds but not associating where they are coming from. He has been so visual that we're trying to retrain him to respond to sound. I can't say enough good things about the therapist. I asked if I could record and she said "of course."

Bryce falls asleep on the way over so he's a little groggy and nervous when he wakes up. He usually wants to sit in my lap for a few minutes. I explain that she's a friend and we're going to play. Once he warms up, he loves going there. It really is fun.