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.

Soccer Rocks

It was fun to sign Bryce up for soccer this year. All 3 kids for under $100. Sweet!!! He loves to play and really wants the ball but sometimes coordination is a struggle. He doesn't let it frustrate him. I love his sweet face in the tunnel. This picture is priceless. We made a Thomas the Train sign to hang on his goal post so he would remember where to kick the ball. 

Brielle played too. She goes for the ball more this year. She seems to really be enjoying it. It was cute to see Brayden giving her some pointers at the sideline. :)

AB Playdate

 

I found out (Tuesday) about the Advanced Bionics activity. Our Saturday was already packed but I decided we should go. 

Bryce's siblings get invited to things but it's not often that he gets invited. He's different and sometimes different is hard.

It was so fun to take him and to be around kids that are just like him. It was so nice to meet other Moms that have traveled some of the same paths we've traveled. I met other Moms that have kids with auditory neuropathy. I got some good pointers. Bryce had a BLAST.

We even got to hear from a police officer that lost his hearing due to a virus. It was a bad one that put him in a coma. When he awoke, people were moving their mouths but no sound was coming out. He has cochlear implants and he's right back to hearing.

I Hear That

Bryce had a wonderful speech therapy session on Thursday. His therapist is awesome. It's so crazy that my college roommate studied speech pathology. She showed me how Bryce can hear (some sounds) but we have to retrain his brain. By introducing the sound, taking it away and then bringing it back, we got responses. I left on Thursday "walking on Sunshine". It was such great news.

Bryce is super loud and this can also be frustrating and painful. Brenlee is learning to be loud too. Yikes! I have hunting muffs that I sometimes wear to muffle his sounds.

Plan B

Well, there's always plan B, right? I saw this very cute quote at the store the other day and snapped a picture of it. I'm trying to make lemonade of the lemons that have appeared in life. Sometimes I fail miserably. Last night we sat down for dinner and Brielle told me, "Mom, you're the best Mom ever!" I told her, thank you but sometimes I don't feel like it. She asked, "why?" I said, "well, sometimes I'm just not very patient." She said, "it's okay if you make mistakes." It was so sweet of her b/c I definitely did not feel like the best Mom ever.

The last year has been a bit of an adjustment and it continues to be an ongoing adjustment. I have to say that sometimes I do have self-pity and I've definitely asked "why me?" I'm hoping this is normal and that the Lord will forgive me for those times. I'm sure I murmur more than I should. I feel I'm strong but how long can you be strong? This life change is a marathon that I'm not sure I was prepared for. We're coming up on the anniversary of our year long roller coaster ride.

I was reflecting back about how hard it was when life changed so suddenly a year ago: new baby, and Bryce lost his hearing. It took a while to get answers. Doctors said it was behavior, after all, he passed his newborn screening. Friends said maybe he was ignoring us. We knew something was wrong. I would never have guessed auditory neuropathy. In the beginning, there was the new baby, recovering from surgery, Bryce's breath holding and awful tantrums (he suddenly lost his way to communicate) and lots of lots of doctor appointments. Oh, and his breath holding spells were pretty bad. Frustration just made them worse so you can imagine how they escalated. I couldn't even drive him to some of the first appointments because I was recovering from surgery. Wow! It was so crazy hard. I ended up with a heart arythymia from all the stress.

I'm going to be really honest. I seriously considered returning to work. It was almost more than I could handle. It pushed my limits so hard. I wanted to just walk away. It was hard. It was very hard.

I do have to say that I've learned a lot from others that are strong (I'll save that for another post) and their examples have been a huge support for me.  The challenges my family faces do (as my friend, Kelly, said of her challenge) test limits.

Now things are easier in some ways and hard in others. We've made it through the cochlear implant process. We found the right doctors that said, "something is wrong." The process is long and frustrating but we finally made it through. We spend a lot of time and money at the doctors. Every trip to Texas Childrens is a $10 parking fee. I'd much rather go play with friends or go volunteer at the school than to go to so many doctor appointments. Lest this sounds likes more murmuring, I must say I'm thankful that there are doctors to go to that can help the situation. It's a blessing! Between doctors, therapists, specialists and school staff, I really can't keep track of names. It was embarrassing to introduce myself to the new AP at Blackshear the other night and have her remind me that she was the case worker for Brayden's ARD. Oh, yeah, I thought she looked familiar. Seriously, what a whirlwind. Bryce has a weekly speech appointment and then audiologist appointments here and there.

We've had a lot of equipment issues with Bryce's cochlear device. It's been frustrating and it's set him back multiple times.  Bryce has had cables break, a microphone break, both of his processors have broken. At least they are  quick to replace them. It just seems like we've had some setbacks with the equipment.Once again, we have to be thankful that someone had the idea of bypassing the damaged area to allow "bionic" hearing. And then the speech therapist that know how to retrain the brain. It's amazing and such a blessing.

I think the emotional challenges have been some of the hardest. They say when you have a child, you're heart walks outside of your chest. I believe it. My heart has hurt for my kids in so many ways. It's hard when you want your kids to experience life as you experienced it. When you have hopes and dreams for them but there's a whole lot of unknown. It's hard to go to an IEP meeting for Bryce and to consent for them to teach him Braille b/c we have no idea if the optic atrophy will progress and take his vision.

It's hard when you go to the playground (or anywhere really) and he's loud and it scares some kids. He loves people and just wants to play. It's hard when he wants to be like everyone else but he's different and people often times will treat him differently.

We want to potty train him and so do his teachers. He has loose stools that make it tricky. He's pulled out underwear in hopes of wearing them and I've told him "no". It's one more thing I just can't do right now. I just can't handle the thought of Brenlee crawling through an accident. It's a limit. I can't go there. Bryce had a colonoscopy to see if there was an issue we could resolve. Everything came back normal. They checked his enzymes to see if there was an issue there but it was normal. The only thing they said was he has reflux. This explains why he holds his stomach sometimes. So, thank goodness (such a blessing) to have another friend that has been down this road with her sons. (Ginger) she has given me suggestions on how to navigate a gluten free diet. Meal planning has been a challenge to get back into but now we're trying some new things. Why does eating healthy have to be so expensive? Diapers are expensive so gluten free...here we come!

It was challenge enough to have one child have bilateral hearing loss. Almost in a parallel way, years about but similar timing, Brayden was diagnosed with auditory neuropathy as well. I remember taking him to see the specialist during Bryce's visit. He said to start back at your pcp. Once again, we were shocked. Then of course we were paranoid that all the kids would lose their hearing. Although I knew Brayden had neuropathy, I couldn't help weep when his ABR report looked just like Bryces. He could still hear and can still hear but it's residual hearing. On paper, he's deaf. What a relief to see "normal" ABR reports for the girls. (Can you see why there's been so much roller coaster emotions?)

We're at a tough spot with Brayden as we try to figure out which ear to implant. They want to implant his right side, which is his stronger ear. It's hard to think about taking away his hearing. I just hold my breath at the thought. We're praying about the decision. To me, to my family, it makes more sense to leave the good ear usable and implant the left side. I'm not trained in this area so of course I value the audiologist and their opinions. The surgeon agrees with us and thinks it wise to leave the hearing. After the implant, it's not turned on for a month. Then, it's turned on slowly. It makes us wonder if the correct ear was implanted for Bryce. So many questions. We have a consultation after Spring Break. We're strongly considering implanting the right ear but pushing the surgery date off till the end of May (closer to the end of the school year).

I went to a speech eval for Bryce. The coordinator is very nice and I really like her but she suggested that maybe we could start outside physical and occupational therapy back up for Bryce. I just looked at her and said I can't right now. There's too much juggling going on. I let her know I have another son that's going to get implanted as well. Our appointments will double as have the school meetings. Once again, drawing a limit. I'm doing the best I can...without going completely crazy. ;)

Bryce wears a helmet that was meant for recess but is worn all the time. He falls a lot and there are corners in the classroom. It's more for his safety and I completely agree with it. It does knock his microphone device off his head. Then, his head was getting red. There were too many magnets in the microphone and it was irritating his head. If it gets bad enough, it could break down his skin and we could deal with an infection and possible loss of the device. So, we've had a few extra trips to get that resolved.

Although there have been so many ups and downs, I  know that Heavenly Father is in the details of our lives. He knows and loves us and shows us through others.I was having a particularly hard weekend. Things can just mount and then suddenly you feel buried under a ton of emotions.Sometimes you do feel hopeless. We heard back from genetics-nothing. Matt, Brayden and Bryce have the same variance on the wf gene but because Matt doesn't have optic atrophy and deafness, there's no way to know if that's causing it for the boys. Basically, it's unknown.

We had an appointment with an AB rep and the audiologist to test Bryce. They really weren't getting good responses. They thought they got one but they said with neuropathy it's hard to know. We were also having more issues with his head getting red from the magnet.

I just felt pretty bummed. There wasn't really much going well. I felt so blah that I even stayed home from church. I don't miss church unless I'm really not feeling well. I didn't feel well. I felt tired. I felt discouraged. I felt guilty for not going but I was pretty sure Heavenly Father would understand. I just wanted to rest. I wanted to think things through. I try to stay positive but I wasn't so sure I could muster a smile.

I got a card in the mail and an article that really lifted my spirits. The timing was everything. The message is a good one and it really could have been appreciated anytime since all the changes happened, but the timing was right. It was a pretty clear message to me that Heavenly Father knows, He really knows what it's like. He works through other people to meet our needs. I also got to talk to a friend about some concerns about Bryce and the timing was also right on target. Those two experiences really helped breathe some hope back into me.

I have thought about friends that are going through struggles. I pray for them and my kids pray for them. I have such a testimony of the Lord's timing. If I had my way, Brenlee would have come to our family a year earlier. I questioned the timing of the Lord when she came before the flood gates opened. He couldn't have reserved a sweeter daughter for now. I'm just not sure any other personality would have worked for our situation. He knows. He sees the big picture. As we're riding our rollercoasters, He's there. I'm so thankful for tender mercies that keep my hope afloat.

Happy Dance and Baby Steps

After a very good speech therapy session, I asked Matt to stop at Petco on his way home to get a dog clicker. It's a sound Bryce can hear. Bryce used to run to Dad when he heard the garage door. He stopped doing it. This was one of the first things we noticed when his hearing disappeared. It was sad. Matt came in clicking the clicker and guess who turned around to see his dad? Yes, Bryce turned around. Happy dance!!!