Twas the Night Before Christmas 2015

Twas the night before Christmas and all through the house,

The Mom was getting things ready…her and her spouse.

The tree was lit with ornaments near the middle,

Mom can’t reach the top and down low the kids would fiddle.

The presents are wrapped and tucked under the tree,

Different paper for each kid, no names you see.

When what to my wondering eyes --Santa chair covers are such a nice touch,

Donut snowmen for breakfast b/c our elf loves us so much.

The magic of Christmas, we can’t get enough,

It sure takes the edge off the year that was oh so rough.

Mom doses off with memories of the year,

A year ago, Bryce had surgery on his ear.

Brayden was scheduled but a banana caused a delay,

He forgot about fasting and ate anyway.

The boys had many changes that hurt our heart,

You want the best for your kids, decline was the hard part.

Boys that were born hearing and walking,

Healthy and strong with lots of talking.

Slowly the changes and Bryce lost the ability to walk,

We’re so thankful that Brayden can still talk.

Bryce has taught us what a hero is about,

He knows how to be thankful in all things no doubt.

He rocks his walker and doesn’t slow down,

We’re so thankful a diagnosis was found.

 Is it reversible? It is not,

Improvements a blessing, we’re thankful a lot!

Who would have thought B2 would be the issue,

Hearing loss, vision changes and walking challenges too.

We can’t live on what ifs and we know the Lord is in control,

The Lord loves us, we can accept whatever role.

Despite the challenges we’ve faced these past two years,

We have had good times and happy tears.

Watching your child learn to walk for the second time,

Is a tender heart moment, a one-of-a-kind.

Others notice the happy and energetic disposition,

Bryce is determined and if anyone will walk again, he’s in the position.

Heavenly Father loves us and He loves our boys,

How blessed we are to learn from them –they bring so much joy.

“I can do hard things” a motto we hold,

God helps us handle what we’re given, despite the load.

Merry Christmas from the Nelsons, and a Happy New Year,

We love Heavenly Father and our Savior so dear.

More details you’ll find if you read below,

Updates on the family, if you want to know.

(Also last year’s Christmas letter….we never did take Christmas pictures.

This year, here’s our letter but our cards will be late-- but at least we took pictures.)

Medical

Brenlee was born March 11, 2014. Two weeks later, Bryce lost his hearing or we discovered he wasn't hearing. Some doctors thought it was behavior but we knew something was wrong. A few months later, Brayden started his hearing loss. They were diagnosed with auditory neuropathy and later Bryce was pronounced deaf/blind. After lots of changes (auditory neuropathy, optic atrophy and ataxia), we got an official diagnosis September 30, 2015. It’s called Riboflavin Transporter Deficiency. The boys have two mutated genes (one from each parent) which cause them to have a deficiency in the B2 vitamin. 

The treatment is high doses of B2. They take 1000 mg a day. Bryce takes a compounded form (liquid) four times a day. It tastes awful so we disguise it in chocolate milk. Brayden swallows pills three to four times a day with marshmallows.

If left untreated, it’s fatal. Both boys suffered decline (hard, hard, hard to watch and not know why they’re declining) and we were asked to take a break from speech. Bryce lost the ability to walk and Brayden started tripping and stumbling more frequently. After a diagnosis and treatment, we saw immediate improvement and hope it will continue. Brayden started responding better to his device. His balance improved as well. He stopped complaining of stomach pain and tiredness (every day he had the same complaints). He would get tired from playing legos. Homeschooling was hard (seeing the struggles) but we also knew it was necessary given the conditions.

The girls were tested and we found out on December 21, 2015 that Brielle has zero defective genes. Brenlee has one so she’s a carrier. What a blessing!

New

We rescued our dog, Dude, after finding him wandering in a neighborhood. He’s calm and sweet and of course the kids love him. Digit is our turtle we found and Brayden named him. (I think he has a thing for Math and numbers…like his Dad.)

We’re homeschooling this year. Trisha gets lots of comments about it but at the end of the day, it was right for our family and once a teacher, always a teacher.

A handicap placard—we waited way too long to get one but it’s a blessing now.

Matthew was the controller for his company and he’s now the CFO.

Brayden received a cochlear implant in April, as did Bryce. Brayden has one and Bryce has a double. We know they can hear sounds but speech is not as easy. They have auditory neuropathy which is a more complicated type of hearing loss.

Matthew and Patricia went on their first cruise to celebrate ten years of marriage. Wahoo!!! If possible, couples should have a trip/vacation once a year together. It’s refreshing!!!

Matthew: He’s done a bit of traveling this year. He went to Toronto, Canada (eh) with Mom, Brayden and Brenlee where we went to the Signs restaurant. (We detoured to Palmyra, New York as well.) He went to Cancun and Malaysia. He built an awning on the back patio. He’s wearing a boot for his tendonitis and he ended the year with septoplasy surgery (broken nose year’s ago…gotta love church basketball! He still plays and I just hold my breath.)—had to get it done while the deductible was met. ;)

Patricia: She doesn’t suffer from boredom…ever. She has a part time job going to doctors and therapies for the boys. Sometimes she wishes she were more of a stay at home Mom that got to stay at home. She attends a weekly sign language class and tries to go to Zumba when possible. She ended the year with some cold that turned into pneumonia. Moms shouldn’t get sick but they do. Needless to say, we flew to Utah for Thanksgiving instead of driving.

Brayden: He turned NINE in September. He receives some benefit from his cochlear implant. He’s talking but struggles with hearing. Signing takes the guess work out of it for him so we use both. He has developed an interest in building with plastic drinking cups and builds all sorts of creations. He loves checkers and has developed advanced strategies. He's a great big brother (most of the time) and Brenlee sure loves him.  It was cute to see Brayden get into the spirit of giving this year. When we got back from our cruise, the presents had doubled under the tree. He wrapped up diapers for Brenlee and all sorts of things he found around the house. Brielle has a jar full of dirt with something hidden inside. Hahaha  He wanted to go to the store to buy some gifts too. He knows Brielle loves oranges so he bought her a bag. J

Brielle: She turned SEVEN on December 10^th. She started up piano again and is currently taking a clogging class. She’s a bookworm and loves to fill her rolling backpack full of books. She doesn’t love to write but she does love getting pen pal letters from her cousins. She’s shy sometimes but once she warms up she’s a chatter box. She and Brayden stayed in Utah after Thanksgiving for a couple of weeks and enjoyed playing in the snow. Homeschooling has some big perks and Brielle saw that pretty quickly and asked to be homeschooled too. She misses school sometimes but when given the option to go back, she politely declines.

Bryce: (4 ¾ yrs old) He’s a champ! If I ever feel like I “can’t” do something, I remember that I have a little hero that doesn’t let anything hold him back. He’s creative in his mobility. If he’s not using the walker, he’ll scoot on his bum or do a rocking horse scoot on his knees. He has to be within feet to see (he’s legally blind). His favorite thing to see right now are Christmas trees. His excitement is contagious!!! He’s LOUD and STUBBORN but we sure love him! He has a few challenges that we’re hoping will improve with time. He likes to watch PJ Mask and Jake and the Neverland Pirates. He loves Dad and Mom and especially loves to play with Mom’s hair. He was a snowman in the Christmas program for deaf ed.

Brenlee: (21 months) She’s a doll. She really is a little one (short legs and a big belly—too cute!). She signs more than she talks. Our favorite sign to see her do is “where”. She does the cutest little thing where she pats the floor to have you sit by her and she wants to read a book. She loves shoes and wears everyone’s throughout the house and even out of the house. She loves cellphones and always seems to get a hold of her Mom’s phone. She’s quiet about it but loves to explore everything. She’s reasonable. She’s the only kid (at this age) that you can reason with and we love it. She's a snuggler and we love her snuggles. She's my only baby that hasn't cried for Santa. She was nervous with her fingers in her mouth.

Christmas Letter 2014

 2014 has brought many changes for us, 

who would have thought our van would tap a bus? (any guesses who won?) 

Baby # 4 (Brenlee Danielle) in March joined our family it’s true, 

shortly thereafter our lives became like a zoo. (Someday I’ll get her baby announcement ready.)          

 Little did we know when Brenlee was just two weeks, 

we didn’t think Bryce could hear us when we did speak.             

“Would you like a sucker?” we offered to distract, 

how about a cookie or ice cream, he wouldn’t turn down that.                

  There was no response from our sweet little guy,

 “it’s like he can’t hear us” Matthew replied.

An appointment scheduled with an audiologist we would go,

 by the time of the appointment he was deaf we did know. 

  We hoped maybe it was fluid in his ear,

 the audiologist said it was completely clear.                                                                               

What could cause this? We wanted to know,

 we had to do more testing and to more doctors we did go.

Some thought it was just behavior…simply his choice,

 reflexes don’t lie, he wasn’t hearing our voice.                                         

An ENT wanted us back in 6 weeks to test again, 

Are you kidding me? ….We didn’t go back to him. 

                                           

  Bryce had language, he talked and knew words,

 “baby in your tummy” one of the last phrases we heard.                

  His language progression seemed to taper a bit, 

we didn’t know why but didn’t think much about it.

It took an ABR to unravel the hearing loss mystery, 

the diagnosis…auditory neuropathy dysnchrony .                                               

  It’s like a lose wire, hearing cuts in and out,

 we believe the loss was gradual there’s no doubt.  

                                         

  Lack of communication caused all sorts of fits, 

frustration and breath holding …we were losing our wits.                          

A new baby and recovering from a c-section surgery, 

an out of control toddler, it felt like purgatory.      

Talk about a life changing event, 

this wasn’t on our radar…we truly were spent.                                                                   

  Life is hard and can feel “heavy” and hard to bear, 

the Savior said Come unto me, He really does care. 

                                            

We felt overwhelmed to teach our son about church, 

we didn’t know any sign language , we had to go search.              

We found a deaf branch nearby but that isn’t always the case, 

the first visit there we knew we were in the right place.         

                              

We started signing classes once a week too,

 learning ASL lessened the tantrums Bryce threw.  (Communication is key.)  

More testing has shown optic atrophy is a disability too,

 he’s legally blind but sees well enough it’s true.                                         

We’re still testing to see if there’s a genetic cause, 

it’s a real reminder that this earth experience comes with its flaws.                  

Someday perfection will be a beautiful thing,  

it reminds us of the blessings the Atonement does bring.  

    

Bryce started preschool in a deaf co-op at a wonderful school, 

we’re so thankful for good teachers that really are cool.             

   He loves school and loves riding the bus,

 He loves going but loves coming home to us.      

                                                                

We were in for yet another change that we didn’t foresee , 

Brayden is also losing hearing …does it run in the family?                        

 “Is there a family history of hearing loss?” a frequent question we get, 

“there is now” is the reply we .       

     

Brayden turned 8 this year in September, 

it’s definitely a special time we will always remember.                                   

Turning 8 is a big deal and here’s the reason why, 

we get to Follow the Savior or at least try.                       

                                               

 He got baptized in October by his wonderful dad,

 his family was there and he really was glad.                                          

  He’s been given the gift of the Holy Ghost, 

He’s the greatest gift that can help us the most.

We had all the kids tested to see how well they are hearing,

 Brayden’s ABR looks like Bryce’s, it was quite telling.                    

  So far the girls have hearing that’s “normal” on the chart,

 we’ll have it tested yearly to see if hearing loss will start.              

  Bryce got a cochlear implant (Dec. 8^th) after all of his testing,

 we’re hoping it will work, it would sure be a blessing.                            

 Some may wonder why we would give it a try, 

if there’s a way to restore hearing we want it for our guy.    

Hearing loss and ASL are a part of us now,

 we see life differently…I’m telling you, WOW.                  

So remember that van and remember that bus,

 we purchased a Honda Odysessy and it’s perfect for us.    

We got a small dog, a Boston Terrier mix,

 He’s perfect for a family, he really does click.    (Moo Moo)         

 Some of our changes have been harder to take, 

in some ways we felt like we couldn’t catch a break.   

One thing’s for sure we know life’s a test,  

we must come to the Lord to find rest.         

“We’ve seen many blessings in all of our trials, 

there’s still laughter and still lots of smiles.     

 “In EVERYTHING give thanks” a sign in our home we display, 

The Lord is good, come what may.              

The Lord works in mysterious ways, 

we trust and will follow Him all of our days!

Matthew: He has new bosses and this has been a blessing. It’s been a blessing to have insurance as we’ve met and well exceeded our deductible with a new baby, hearing loss, genetic testing and a cochlear implant. He has traveled this year to Australia and Guam, Singapore and Malaysia. He and Trisha got to go to Cancun for a business trip! J 

Patricia: Found a different doctor my last trimester because mine was out of the country for my due date. Yikes! Got the best birthday present (Brenlee was due the day after my birthday) but she was born March 11^th. She’s trying to learn ASL to better teach the kids. Doctor appointments are our extracurricular activities right now.  She developed heart arrhythmia just after the hearing loss. It’s not caffeine, coffee or drinking…it must be stress. Juggle, juggle, juggle …it’s tricky and we’re still working at it.

Brayden: turned 8 and got baptized. He’s obsessed with Legos and had a Lego Party when he turned 8. He started scouts and loves it! He’s wearing hearing aids and going through the cochlear implant process…currently not a candidate. He’s wearing glasses. He loves 2^nd grade and he has amazing teachers that are working with him as he loses hearing. He may switch to the deaf education program depending on his hearing loss progression. Despite his changes, he still manages to do very well in school.  He’s playing piano and we’ll see how long he gets to continue.

Brielle: started Kindergarten (and loves it), turned 6, has a Frozen obsession. Brielle started piano and seems to be a natural. She’s still a bookworm and we find her reading all over the house.

Bryce: turned 3, lost his hearing, undergoing genetic testing and found a variance on a gene (parents are being tested for more information as they’ve never seen a variance like it before and they’re not sure if it is the cause of the hearing loss etc), going to PPCD in the deaf co op program and loves it. He loves trains and loves dogs. Moo Moo, our family dog, joined our family mainly for Bryce’s benefit. His breath holding spells have slowed down to almost non-existent and we attribute this to Dr. Chase. He needs a bubble suit because he’s always falling and manages to get quite a few battle wounds (usually on his face). His sign language is improving and it’s fun to see.

Brenlee: a flexible, angel baby that we adore. She has two bottom teeth and is slides all over the house. It’s an interesting “crawl”. She has her daddy’s beautiful, blue eyes. She’s clapping and waving. We’re looking forward to teaching her sign language. 

Energizing

Bryce gets pretty creative with his walker. Hahaha. One Thing Is For sure...He Has More energy. I'm not complaining. I love to see life in him again.

One of the funniest things is to see him turn it into a skate board. I picked him up from school the other day and he was doing a wheelie. He likes to find ramps and ride it down.
‪#‎ilovehimasbigasTexas‬&more

It feels like we put out one fire and then another starts. Well, sometimes we never get a fire put out before another pops up. We're trying to get his gut/stool issues figured out but now we're dealing with weight loss. He has more energy but isn't adjusting his intake accordingly. I think he's been losing weight over time (and muscle) so now we're trying to bulk him up. The doctors frustrate me. I don't even like the GI doctor we see (currently looking for a new one). She scheduled me back in a month for a weight check after putting him on pediasure (a 4 a day prescription that insurance won't cover...they are $11 for six bottles) and a visit to see a dietician (she forgot to put in an order for a referral). I finally got the order but now I only get a voicemail (and no callbacks) for the scheduler. We've almost completely tossed gluten and dairy free eating out the window. He gets Blue Bell ice cream, egg nog and I'm going to try goat milk. I heard it's fattening. :) 

He truly does have more energy. I played tag with him yesterday and it was so much fun. His laugh has to release endorphins for the hearer. It's A-MAZING. His scream is quite the opposite but we won't dwell on that. 

FHE: Candied Apples

Caramel apple bites for fhe. Thanks pinterest for another great idea. The kids loved it!

After fhe, the boys wrestled. I can't tell you how much I enjoyed watching them. They have more energy now and are "lively". I prefer to see that. Their decline was painful. Bryce is attempting to walk more and was able to stand up without holding onto anything. He said the prayer again last night he used to say it but stopped. I know they said it's not reversible but to see some things start to come back makes me wonder.
‪#‎hopeingoodthingstocome‬

The Refiner's Fire

My brother-in-law, Michael, sent an email and included the following story:

The Refiners Touch

"There was a group of women in a Bible study on the book of Malachi.  As they were studying chapter three they came across verse three which says, "He will sit as a refiner and purifier of silver." This verse puzzled the women and they wondered what this statement meant about the character and nature of God.

"One of the women offered to find out about the process of refining silver and get back to the group at their next Bible study. That week the woman called up a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest in silver beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that, in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest so as to burn away all the impurities.

"The woman thought about God holding us in such a hot spot - then she thought again about the verse, that He sits as a refiner and purifier of silver. She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. For if the silver was left even a moment too long in the flames, it would be destroyed.

"The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?"  He smiled at her and answered, "Oh, that's the easy part -- when I see my image reflected in it."

"If today you are feeling the heat of the fire, remember that God has His eye on you and will keep His hand on you and watch over you until He sees His image in you."

I can't tell you how much I know this is true. A year and a half of no answers and consistent decline and I felt like I was at the end of my rope. My van had just been hit at the  YMCA and it was the straw that truly broke the camel's back. A few days later, I got the call that was a "turning point" for us. It was the diagnosis and a treatment.

 

I would have never guessed that "Riboflavin Transporter Deficiency" was the cause of auditory neuropathy, optic atrophy and ataxia. If left untreated, it's fatal. I was relieved to hear there's a treatment. It involves high doses of B2. Is it reversible? No; however, there should be improvement. With that being said, I believe in a God of miracles and if He wants to heal the boys, it will happen. 

When we saw the geneticist, we asked questions and were concerned about the girls. Apparently it's pretty rare but can run in families with siblings and cousins having symptoms. We had the girls tested and we're waiting on results. The boys were started at 200-400 mg of B2 that can be purchased at GNC, Amazon or Sprouts. We were to increase their dose to 1000 mg a day. 

We have Brayden swallowing 100 mg tablets with marshmallows. He has his own pill box broken out by days and he does a great job of taking them. Bryce is a little harder. We have to crush the tablets and disguise them in juice, applesauce, smoothies, sandwiches and anything else that will work. We're looking into a liquid form and hope to be able to use that for smoothies and drinks more easily. 

I can't tell you the burden that was removed off my shoulders with the diagnosis. Even more so, that there's a treatment. I'm still somewhat in shock that we finally have a diagnosis but I'm incredibly thankful. I feel like the refiner's fire was getting pretty hot and I literally was pulled out of the fire. 

I'm thankful for a loving Heavenly Father and Savior that know me and my family and blessed us with answers. I learned things only that experience could teach me. It was hard and I'm not so sure I would "pick" this trial, yet, the blessings from it have been wonderful. 

I better understand my Heavenly Father and know how it must have been hard to see His only begotten Son suffer for us. It was painfully hard, almost unbearable, to watch my boys decline. I better understand my Savior and His love for those with disabilities. I understand another component of the atonement that I never considered before. He suffered for our sins and sorrows. Some of those sorrows involve our trials that shape us to become more like Him. He suffered so we could become more like Him. I never considered this before. I feel like my understanding has been opened in ways I never knew before. God is good. He is real and He is in the details of our lives. He loves us and I stand amazed at how customizes our trials to teach and help us to "become". 

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.

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.