Wednesday, May 20, 2015

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!!!!

Friday, May 15, 2015

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.

Tuesday, May 12, 2015

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.

Post Surgery: Day 1

He complains of pain off and on but doesn't like the medicine. We just slip it in his apple juice and we're good. He seemed a little more unbalanced at first but I think he's pretty much his normal self with his normal balance issues. 

I had him sit in this stroller. Btw, the stroller was short lived. He wanted to be up. We rotated through things. He played in his room, we did speech in the living room, he watched tv, etc. He said he was going to school tomorrow. Nope, he'll be home. He's missing the dogs but I'm glad they're not here right now. He doesn't need anything else to trip on. It was nice to have a friend watch Brenlee to give me one on one with him. I sure love them but they double team me and it can be really hard.

Here he is signing: hurt. He seemed to shake it off pretty well. 

Bryce's Surgery: Second Implant

Bryce didn't want to take the happy medicine to help before they really sedated him. We had to go about it the "hard way" and help him swallow it. He was mad at me. It only took minutes before that changed and he was slap happy. He was laughing and pretty funny. He forgot all about how I forced him to take the medicine. (see the before and after below)They wheeled him away in a wagon. He had a big smile on his face. What a sweet boy!


 
The surgery went well. Like the first time, he didn't respond to the device. I guess it happens about 20% of the time, even in cases without auditory neuropathy. They decided not to keep him overnight. The surgeon feels like we know what to expect. We did think it was weird that they put a small muff on his ear. I'm glad I hung on to the one from the first surgery, we swapped when we got home. We were also disappointed that he didn't have an AB buddy (the monkey) that Brayden received with his equipment. It was ordered on his packing slip but it wasn't there. One call to customer service and it's on the way.

 

Busy Bryce

If there's anything I'm lacking in life, it certainly isn't entertainment. Today as we made our way through some more downtown traffic, Bryce was babbling away in the back. He really is our tazmanian devil. Hahaha although he's loud, crazy loud, it's a blessing that he's still trying to talk. Some kids won't or don't for a long time. This really is helpful for speech.
After a frustrating/exhausting day yesterday, we've had some funny experiences. Focusing on them sort of makes you forget about traffic and such. (Bryce would not wake up from sedation yesterday. I guess she gave him more during the ABR. A wet wash cloth wasn't working. He loves banana bread so I put it under his nose. His eyes opened and he wanted some. Truly the way to a man's heart is through his stomach.)
The nurse yesterday said bryce was calm. I guess he was. No worries, he's making up for it today. He gave the Dr's stool a go, built a chair train and look at his messy face. He was signing tree. Brayden saw a man on a bike in the downtown area and said, hey is that a missionary? Hahaha. Luckily, Matt met us half way, took Brayden back to school and Bryce and I had lunch in the van. He dumped water accidentally into the lunchbox but luckily nothing was damaged. Celery sticks and peanut butter....can't go wrong there. They are messy for sure.
Speech is next. Unfortunately I forgot to grab socks for Bryce so his shoes and foot braces aren't going to work. I also forgot his device but caught Matt before he was too far and he grabbed it for me. I knew I was forgetting something. Well, at least I got a lunch ready, brenlee's bottle and extra milk and tylenol in case her fever comes back.

CHS

The Center for Hearing and Speech (CHS) has an annual carnival. I debated whether to take the kids but opted to brave it and go. I'm glad I did. I pulled the kids out of school (Bryce was already home from field day) at 2:15 and we headed downtown.
I'm glad I took them. They were great for me and really enjoyed the carnival. They had a snow cone truck, food, games, face painting, balloons and cotton candy. I already have requests for next year.

Sunday, May 10, 2015

ABR for Bryce

Abr today and surgery next week. The nurses can't get over this cute boy. They said he's calm. I said sometimes. He's definitely cute though.
I'm glad I brought a jacket this time. It's cold here.
I'm a big fan of the nose mist sedation. He didn't fight it at all. I got to lay beside him while he drifted off. I was disappointed that I couldn't stay for a napwink emoticon

Donut Feel Good For Others To Be Thoughtful?

Brayden's primary teacher dropped by with some treats and a visit. He thought it was awesome to get a dozen donuts. I helped him use them up and offered some to the missionaries. 

Brayden After Surgery

It was so cute that Advanced Bionics gave him a monkey with his equipment. I think it's adorable. It has a CI too. The surgeon didn't keep Brayden overnight but the surgery did last longer or maybe started later. It took a while.
 

Brayden's Surgery....For Real

Before Surgery....I joked that I was going to lock him in his room. I have to admit that while he was playing on dad's phone, I did lock his door while I ran to pick up pictures for soccer tomorrow.
He stayed up late watching a movie with us. 

No More Hearing Aids

 drove down to Texas Children's (West Campus) and was lucky to have my friend Mary as my companion on the drive. I turned in $1000 worth of hearing aids. It's so nice to be done with them!!! We went out to eat afterwards. Brayden had a coupon for a free kids meal at Hasta La Pasta.

Newborn Hearing and Progress

Bryce had speech therapy. Brenlee has been getting more mobile and I've been wondering what to do with her. I hate to get a sitter every week just for speech. It'll get more intense when Brayden starts speech too. The center for hearing and speech is awesome. The therapist said she could sit in the high chair. Bryce really loosened up (became more vocal) when this happened.
Bryce's device was turned on in January and he had "newborn hearing". He's now about at a 1 year old....right with Brenlee. They imitate sounds. It's so fun to see and hear Bryce imitate. He did this at dinner the other night when Brenlee babbled some tune. We KNEW he heard it because he babbled the same tune.
I'm not sure if the pattern will continue but maybe within a year, (again, assuming the pattern continues) he will be caught up in his ability to hear.

Success Despite Deafened


When the boys first started losing their hearing, (Bryce's was gone but Brayden was losing it), I heard all sorts of things. I heard about the percentage of deaf children born to hearing parents. I heard about few parents learn to sign. When this happens, the kids suffer from a lack of language. It broke my heart to this. Learning a new language isn't easy but usually change isn't easy. I was and am determined to learn sign language. It may take me my whole life but I will try.
It has been amazing to see Brayden continue to succeed at school. It's really a bit ironic that the year he got GT teachers was the year he lost his hearing. We've had him tested and he seems to slip through the cracks and not qualify. I don't mind him missing extra work but I'd love for him to have teachers that are trained to work with gifted and talented children. I felt worried when we got an official diagnosis with him. Here he would be challenged and I wasn't sure that he was going to do well. We actually were expecting his grades to drop as his hearing loss progressed. 
His IEP has a few modifications for him but they are few. He doesn't take spelling tests because how do you give a test to a kid that can't hear. You can't really write it down for him. So, he does the spelling homework but not the tests. He also has most things in print so he can read them. Read alouds just don't work for him. He has two amazing teachers that are very willing to work with us. They're patient and compassionate and two of the biggest blessings this year.
As we considered whether Brayden should continue at his school or go to Bryce's school, his grades really were the predictor. He kept thriving and his grades didn't change much so they couldn't justify moving him. They said although he would learn signing he would be challenged in other ways, meaning he would probably be bored.  I'm glad we decided to keep him at his school. 
This kid has somehow maintained the A Honor Roll. I'm proud of him!!!