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 10th.
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. 8th) 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 11th. 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 2nd 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.
