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!

Brayden's Activation

Today is activation day for Brayden. If you've seen the youtube videos, that's probably NOT what will happen. Who knows, maybe. With Bryce it wasn't the case. For him, it actually took quite a while before we starting getting anything. Now it's very slow progress. Auditory Neuropathy is different. The auditory nerve has issues and well, that's how we hear. I'm just hoping the surgery was a success and it bypassed the lesion. There's no way to know. Only time.

He's activated. We didn't get a youtube response but we did get some responses. We probably did with Bryce but didn't know it. Day 2 is tomorrow and we'll keep making adjustments.

Look at all the equipment. ..just for one ear. I'm going to have to eventually keep track of 4 backpacks and lots of equipment.One backpack per ear.

Signing Superheros and Princesses

Saturday we went to a fun event that was a first. I'm impressed with the professor that organized the event. Apparently he has organized Signing Santa too.


We had Batman and Batman mini, Elsa and a little princess. We also invited Alex and Sarah to go with us. He was a ninja and Sarah was Ariel. We met the deaf horse outside the building.




Lots of pictures with super heroes and princesses. Bryce's helper teacher, Amanda Curtis, also came to the event. He loves her. I love it!!! She loves him too. She understands a lot of my up and downs with Bryce b/c she seems them and deals with them at school. She has done diaper duty at school. She gets it. She understands his stubborn little personality and his sweetness.



My favorite hero....SUPER DAD!!!!

Scared of the Dark

Bryce is deaf. It's been over a year now. He's making slow progress with his cochlear implant. We love the hope it gives us for him. Bryce has optic atrophy. It's the unknown. We don't know if it will progress or if it will remain unchanged.

A few months ago, he had a follow up and after dilating his eyes, it was determined the optic atrophy has no progressed. We are hopeful this will always be the case.

Still, there are times my heart is pained. I worry for him. Months ago, I took him with me to a signing class. He wanted a drink of water but didn't want to go to the drinking fountain alone. I didn't get it. I followed him into the hallway and realized or had a pretty good guess of why he didn't want to be alone. It was dark on the other side of the drinking fountains. The hallway lights were off. This is the first time I became aware of it. Since then, I've noticed that he won't go down the back hallway or anywhere the lights are not on. Well, he won't go alone. He did this today. He wanted me to go with him. I didn't understand what he wanted and we were watching a movie. I got up and he took my hand to lead me to his room. He wanted his blanket.

We've started a potty chart for him. He loves the color blue. (A great choice if you ask me but I'm a highly biased BYU cougar fan.) The stickers are small but he has to put them close to his face. Even then, I'm not sure he really sees them well. I almost feel like he's asking for blue but relying on me to find it.

It makes my heart heavy when I think on it much so I try not to. I guess I tend to forget but when I had an IEP phone conference today and they read off his label, deaf-blind, it was a stark reminder for me.

I Gave a Talk in Sign Language

Last month I almost died when I was asked to give a talk. The counselor asked me to sign as much as I could. I was so nervous but my sweet interpreter friend, Amanda, really helped me out. It was scary but I sure learned a lot of new vocab. I also gained a lot of respect for interpreters. I don't know how they do what they do but I appreciate it.

 
My topic was "How do you teach your children the gospel"

I'm going to add my talk in (with some glossing and ASLish phrasing) so you can see a little bit of how it is different.

When the baby was 2 weeks old, we noticed  Bryce was acting differently.

(Story of asking Bryce questions…doctors….diagnosis)    (bumper car classifier)

Bryce was walking and stumbling. My MIL said he was a bumper car.   Bryce was throwing a   

(hooked “v” and rolling in palm of hand)

tantrum. I thought a sucker (candy sucker classifier)would help (why?) He likes suckers …                                                                                                                                      Me: do you want a sucker?     Bryce: no response                                  My husband: do you want ice cream?     Bryce: no response                         Do you want a cookie?         Bryce: no response        

We opened the cabinet and showed him a sucker, he was excited.     

                                                                                    (pointers…down)

 We went to many doctors before we had an answer.

Bryce was losing hearing slowly and we didn’t know it. Now he is

profoundly deaf. Later, Brayden started losing his hearing too. It reminded me of the story of the tower of Babel. The Lord changed their languages and they could no longer communicate. We needed to make some changes.

I worried : How can I teach my children the gospel?  How can I involve them in scripture reading, prayers and church?  

That’s my topic today: how do you teach your children the gospel

 ((2) V coming from face)

We visited the branch. (Why?) the gospel is important to me and

                                                (for)       (same)

I want it to be important to my kids too.

(welcome)

We met the missionaries and invited them to our home. Elder Dean and Elder McGill taught my family how to pray.

We have many prayers: family prayers, prayers to bless the food,

                                  (self)

fhe prayers, and personal prayers. Before Bryce lost his hearing, he tried to say prayers. Then, he stopped.

(Story of Bryce and praying)    

Dad: (to Bryce) you want to say the prayer     Bryce: head shake no    (again and again) . (I didn’t know what to do) I talked to his school

                                                 (U S in a circle, promise…finger to mouth & palm over fist)

teacher. She said at school they say the U S pledge together.    We tried it.

                                                                                                (family members; 5 vertical, pinch at center)

Dad: Who wants to pray? pick.            (everyone copied)                       Bryce started to participate.  Is this the right way to say prayers?             

No, but it

                                                                                  ( change)

helped my family. Sometimes you have to adapt gospel teaching for the needs of your family.  Now he wants to say prayers. He signs cute prayers.  We smile when he prays for a family that lost their daughter. (Dad/Mom watching and smiling…Bryce finger spelling.) We know whom he’s praying for and Heavenly Father knows too. Bryce wants to say prayers by himself. (thumbs up...to him.)

 Our prayers are like hearing people trying to teach a child to pray and

                                                                                                                   (maybe)

helping them with words. We help our children with signs that they may

               (maybe)  (palm across forehead and close)                                (circle thumbs)               Amanda…

not know or have forgotten. My husband and I help each other too. Our

prayers are interactive. If the person saying the prayer doesn’t know the word, they may peek to get help.  I know

                             (rub chest in circles)         (trys)

Heavenly Father appreciates our efforts. I know He wants us to

communicate with Him. I want my children to know that prayer is

                                                                             (tap on shoulder)

important. It makes me happy when they remind us parents about prayer. I know we can go to our Heavenly Father in prayer. Our Savior atoned for us. He understands our problems, our pains, and our happiness.

Scriptures are important. Maybe you’ve heard the saying, if you want to talk to God, pray. If you want Him to talk to you, read the scriptures. Heavenly Father gives us the scriptures to help us. We can learn from the

       (thumb up,arch over…people)

lives of others. Before my boys lost their hearing, we read the children’s

                     (fist together,circle)                                     (eyes…”v” moving)

scriptures, together, as a family. Now, we watch them. It’s a great way to hear & see the scriptures and it helps us learn more sign. I love to see my children excited about the scriptures. Bryce doesn’t know how to read but he likes to carry them around and open them up.  The scriptures give us strength. When the baby was born, we had many changes. Bryce had many problems. It was hard. It was really hard. Job and his example 

                                                             (good?)

helped me. The scriptures are for our benefit. We can find answers to our questions. They can help us become closer to our Heavenly Father and Jesus Christ.    (different)(way)

Family Home Evening is another tool for teaching the gospel. Children

        (a on chest, thumb to chest)                   (work)

learn our attitudes. FHE was a chore.  I have learned that it’s a blessing

                                                                                                          (2 f’s, 1 goes down)

 …and it’s fun! It’s purposeful teaching for our children. Keep it simple.

                                                             (for)

Some of the best lessons were based on the needs of my family. My 

                                                          (race-back and forth)            (car racing for scouts)

oldest son is in scouts. He’s very competitive. It was Pinewood Derby

                             (worried)

time and I was concerned about him. I wanted him to have good

(sports attitude)                                                              (pull apart)

sportsmanship. We had a lesson about that. We divided up

(people say pos…..people say negative)

Positive sayings and negative sayings. We discussed how to be happy for

(thumb up, arch…people)    ( thought story)         (4 fingers, point to bottom 2) (maybe)

others.  We also had a mock race. My younger ones, may not understand the

(palm up…chop up hand)                                                            ( y in circles)

lessons but I know they can understand the spirit. It’s a universal language. If we continue to try and keep learning, it will get easier.  We

                             (middle finger touching palm hand…vertical)

are blessed to have technology. We use lds.org to find primary songs in ASL. We can watch and hear them.  We can watch church videos.

(Amanda)

I have a saying on my fridge, “when you almost keep a commandment, You almost receive a blessing.” We can receive blessings for having family home evening!      

 (do)

Service is the gospel in action. Sometimes I feel bad (why?)  I don’t serve

                                                                                      (closed fist, open fist…close on top)

how I want to. We are busy with many doctor appointments. There are

(“O”…”P”)                   (doesn’t matter)  (pointer left, fist behind move to front)         (V…touch top)

opportunities to serve no matter our circumstance. There’s a couple in

(area: closed fist cover and circle)      (dog care)                      

my neighborhood that needed someone to watch their dog for 3 days. I

(pull at shirt)                                                                          (palm up: slide pointer finger toward self)

volunteered. My son, Brayden, wanted to know if we were getting paid.                                                                                                             (open hand, open hands)           

(He likes money.) I told him no. It’s for service. There are many

                                                                             (example)

ways to teach our children the gospel but living the gospel is probably the best way. I’m thankful for the gospel. It’s a blessing to teach it to my kids.  We go to church every Sunday. Sometimes we go to the ward, sometimes we go to the branch. I’m thankful for the branch that helps me continue teaching my children the gospel.