After his ABR and Brielle's ABR, I sat Brayden down and showed him the results. I told him that he was losing and would lose his hearing. He said, No! I don't want to." I told him it's not something we have control over. For whatever reason, this is happening. I guess I was surprised that he didn't seem to know he was losing his hearing or that he will have a complete loss.
I asked him about attending Bryce's school. Again, I was surprised. I thought he would feel uncomfortable with his changes but he actually wants to continue at his school. Matt made a good point. He said with all the changes that are happening, he's not so sure he welcomes more. True. He did say maybe he could go to Bryce's school on Mondays and Blackshear the rest of the time. Hahahaha...I told him it didn't work like that.
I've emailed his teachers to ask if they've noticed a change. I've noticed the loss is progressing and they have as well. I asked his language arts teacher if we can sign...finger spell his spelling words as an additional spelling word option. Truly, he has great teachers. She's good with it. I can understand why Brayden doesn't want to change schools and teachers. He has some good ones. He's been there since Kindergarten and that's almost a home away from home.
I'm glad I talked to him because I've been pushing to get him over to the other school. In my opinion, it would be better for him to start learning more sign language as he undergoes the hearing loss.It would be better for him to get adjusted. He doesn't see it that way. The message I got was he's happy and comfortable at school. (I talked to the AP and she said she checks on him often and he seems very happy.)
The school nurse is amazing. She has stayed on top of everything and helps Brayden daily with his hearing aids. She called me with concern because he didn't pass his vision test with his glasses on. I was surprised because we just saw the opthamologist a few weeks ago and she said his prescription was right on and if anything, he could wear them more casually. I wondered if maybe they were dirty. I cleaned them and she rechecked and sure enough, that had been the problem.
It's hard to see him change but we do know the Lord is in charge. We do know that everything happens for a reason. We do know we are and will grow from these changes. I've thought about how there's the possibility (if the cochlear doesn't work) that he might never hear my voice (or anyone else's voice) again. Then, I take comfort in knowing that he will still be able to feel the spirit. That's a voice, a still small voice, that he can hear.
Saturday, November 8, 2014
More Good News
Brenlee had her ABR on Thursday. We wanted to do it without sedation and wouldn't you know, she cooperated. It took a little time but not much. The audiologist commented on how she's a good baby. Yes, not sure if that will change, but I'll enjoy and appreciate it now.
The audiologist did one ear at a time and I was relieved that she, too, has "normal" hearing. We hope that doesn't change but we'll keep a watch on it. This particular audiologist has a niece with mitochondria disease. She's almost three and isn't walking. Genetics came back with nothing (as we've been warned could be the case for us) but they feel it's Mitochondrial.
The audiologist did one ear at a time and I was relieved that she, too, has "normal" hearing. We hope that doesn't change but we'll keep a watch on it. This particular audiologist has a niece with mitochondria disease. She's almost three and isn't walking. Genetics came back with nothing (as we've been warned could be the case for us) but they feel it's Mitochondrial.
Thursday, November 6, 2014
Good News
Yesterday we got some good news. The audiologist said she was so glad it was good news. She really didn't want to give us anymore bad news. Brielle had her ABR down at the West Campus. She's such a silly, stubborn girl. She's right on the weight line for medicine vs an IV. So, they gave her the max amount of medicine. We kept her up late the night before and brought her "sleepy".
Matt drove her over while I saw the kids off to school and dropped Brenlee off with a friend. Brielle was waiting for me to get there before she wanted to go to sleep. She kept talking and we kept trying to get her to sleep. She's so stubborn and boy does it show. :) Finally, we got her to lay still and sleep.
.
What a relief when we were handed a "normal" hearing printout. We were beginning to wonder if the machine was broken. No, sadly enough, both boys just aren't hearing like they should be.
Brielle was a little tipsy from her medicine so she got to use a small wheelchair.
She loved getting a bear, a popsicle and a slushie. She didn't want to change into the hospital clothes they provided her but she did like the yellow socks and wanted to wear them. We were proud of her because the medicine tasted "yucky" but she took it anyway.
Matt drove her over while I saw the kids off to school and dropped Brenlee off with a friend. Brielle was waiting for me to get there before she wanted to go to sleep. She kept talking and we kept trying to get her to sleep. She's so stubborn and boy does it show. :) Finally, we got her to lay still and sleep.
.
What a relief when we were handed a "normal" hearing printout. We were beginning to wonder if the machine was broken. No, sadly enough, both boys just aren't hearing like they should be.
Brielle was a little tipsy from her medicine so she got to use a small wheelchair.
She loved getting a bear, a popsicle and a slushie. She didn't want to change into the hospital clothes they provided her but she did like the yellow socks and wanted to wear them. We were proud of her because the medicine tasted "yucky" but she took it anyway.
Tuesday, November 4, 2014
I Shouldn't Have Put On Eyeliner Yesterday
Yesterday Brayden had his first ABR. He's big enough that he has to be sedated through general anesthesia. I went to Brielle's awards ceremony while Matt took him to the West Campus.
Brayden's test results were a bit of a shock for us. I'm not sure how else to describe it but to say my heart hurt. I shouldn't have put on eyeliner yesterday. His results look very much like Bryce. There's not replicable response observed for the ABR. Like Bryce, he slept for an hour with no activity from sound input. I guess I was hoping for something different. How is he still hearing? Well, the ASSR test (it tests higher frequencies) detected 3 sounds in his right ear and 1 in his left. So, how is he different from Bryce? Bryce can detect 1 sound in his left ear. Brayden has 3 more frequencies and that's it. No wonder he says "what?" so much.
I went through a grieving phase for Bryce and I feel it all over again for Brayden. He's older which is a blessing academically but harder in many ways. He'll most likely have to change schools, leave behind the friends, teachers, and school he knows and start over. It's not like moving from one school to another. He will have to continue to learn a knew language. His primary language will change. :(
Brielle has an ABR on Wednesday and Brenlee has one on Thursday. I'm really anxious to see what the results will be. Will this just effect the boys or will it be all the kids?
I think it's hard watching your child struggle, especially when things used to be okay. They used to hear just fine or at least a whole lot better than they do now. Brielle was sick on Sunday so I stayed home with her. Brayden bore his testimony and Matt used a voice recorder on his phone and sent it to me. I thought that was so thoughtful of him to do. As a mother, it was so sweet to hear Brayden's little voice sharing his testimony.
It's so hard to accept these new changes. I guess there's a tendency to compare your children to what they used to have and it's hard. Last night I was working with Brayden on his cub scouts and the thing that stood out to me was to do YOUR best, the best YOU can do. Not someone else's best. So, we've got to focus on doing their best. We've got to focus on not just enduring these trials but enduring them well. It's hard. It's really hard but we can and have been doing hard things!!!
Brayden's test results were a bit of a shock for us. I'm not sure how else to describe it but to say my heart hurt. I shouldn't have put on eyeliner yesterday. His results look very much like Bryce. There's not replicable response observed for the ABR. Like Bryce, he slept for an hour with no activity from sound input. I guess I was hoping for something different. How is he still hearing? Well, the ASSR test (it tests higher frequencies) detected 3 sounds in his right ear and 1 in his left. So, how is he different from Bryce? Bryce can detect 1 sound in his left ear. Brayden has 3 more frequencies and that's it. No wonder he says "what?" so much.
I went through a grieving phase for Bryce and I feel it all over again for Brayden. He's older which is a blessing academically but harder in many ways. He'll most likely have to change schools, leave behind the friends, teachers, and school he knows and start over. It's not like moving from one school to another. He will have to continue to learn a knew language. His primary language will change. :(
Brielle has an ABR on Wednesday and Brenlee has one on Thursday. I'm really anxious to see what the results will be. Will this just effect the boys or will it be all the kids?
I think it's hard watching your child struggle, especially when things used to be okay. They used to hear just fine or at least a whole lot better than they do now. Brielle was sick on Sunday so I stayed home with her. Brayden bore his testimony and Matt used a voice recorder on his phone and sent it to me. I thought that was so thoughtful of him to do. As a mother, it was so sweet to hear Brayden's little voice sharing his testimony.
It's so hard to accept these new changes. I guess there's a tendency to compare your children to what they used to have and it's hard. Last night I was working with Brayden on his cub scouts and the thing that stood out to me was to do YOUR best, the best YOU can do. Not someone else's best. So, we've got to focus on doing their best. We've got to focus on not just enduring these trials but enduring them well. It's hard. It's really hard but we can and have been doing hard things!!!
Thursday, October 23, 2014
Nail Problems
Bryce fell the other day and cracked two nails. One of them started to come off Sunday night and he had a rough night. Grandma Nelson got up with him a few times but I think he was tired. We finally gave him some motrin, used numbits and pulled it off.
This morning, the other finger is losing the nail. I didn't dare take care of it before school (didn't want the medicine in his system) so it'll have to happen when he gets home.
Poor kid. He's always falling and always has bruising or scrapes on him. We don't know how much is from his clumsy walk and how much is from his vision.
This morning, the other finger is losing the nail. I didn't dare take care of it before school (didn't want the medicine in his system) so it'll have to happen when he gets home.
Poor kid. He's always falling and always has bruising or scrapes on him. We don't know how much is from his clumsy walk and how much is from his vision.
Tough Times...handle with prayer
When the going gets tough, the tough get going...
...If something isn't working, change it up...
...We've had some hard things (or there continues to be hard things) but they continue to teach us valuable lessons. Bryce literally knocked me on my back today. We went to occupational therapy and when I squatted down to talk to him, he jumped on me and knocked me flat on my back. He has had two sessions of meltdowns and I just don't think it's worth it. So, I think we won't worry about it right now. Preschool is going well so I'm not going to pull him out on Wednesdays anymore. (While we were at Texas children, he went potty. Yay!)
Later today he had a big potty training disaster. While in the middle of it, Brielle came to me with a bloody nose. Yikes! Some days, you're just pulled in all sorts of directions. Parenthood isn't easy, that's for sure.
These pumpkins came out as an incentive for good behavior. It's a good reminder to put the focus on the good things. We're trying to help unwanted behavior disappear.
I've tried to have the kids in swim and have debated whether to stick with it. Today was a day of reckoning. The timing isn't right. There's too much going on. We have way too many doctor appointments, way too many things to catch up on. We need to keep it simple. I think we've missed more than we go. It's time to cut back.
Although things have settled as far as Bryce is now in full day preschool and it's a good break for him and a good break for me, there's much to be done. I'm playing catch up on bills, paperwork, learning a new language, enjoying a growing baby that's starting to get busy, researching cochlears and trying to decide on one of the 3 brands ( you should see the thick manuals we need to read, decide about a vaccine against meningitis ( cochlears increase your risk slightly), look into safety precautions for Bryce (we need to try and get a deaf child at play sign up) and also a possible handicap sign.
Bryce is considered legally blind with his optic atrophy. We still don't know the degree to what he's visually impaired but we know there's something.
Bryce is a tough one. He stumbles and falls a lot bc of his awkward gait. We're scheduled (in December) to see a GI Dr bc of his loose stools. His compromised vision also causes safety concerns and issues. (The school nurse called today to let me know he has a bruise on his head bc he hit a door post.) Then there's the bilateral severe hearing loss. All that he's going through is hard for him and hard (physically and emotionally) for me.
Brayden is quite as bad (slight, very slight optic atrophy). His hearing loss is about 50%. He's one amazing kid to do so well in school despite this challenge. His challenges also include behavior challenges. He's more frustrated and we see more aggression (much like we saw with Bryce). He's experiencing ADHD behavior and struggles to focus his attention. We notice this the most when we ask him to do things. We have to ask many times. He's still taking piano lessons but it's also a challenge to get him to use a metronome because of the hearing loss.
As we haven't heard back on the genetic testing, they are thought to have mitochondrial disease. I can't even pretend I understand it, much like I can't pretend to understand auditory neuropathy.
What I do know is somehow Heavenly Father blessed me with amazing kids. To see them struggle through their challenges is hard but to see them face them head on, is just inspiring. Sometimes I'm lacking in energy and endurance, time (I still haven't posted Braydens baptism pictures), optimism etc but I'm not lacking in motivation. Love for my kids motivates me to keep trying, one day at a time.
Potty Training in Progress
Ta-da! Bryce pooped in the potty. I asked him Friday morning if he needed to go. Sure enough, he did it. He's done it a few times since. Yay!
October 8th
Bryce was so excited to go to school today. He started laughing when we pulled into the parking lot.
When I picked him up, his teacher asked about naps. She said he didn't take one. Hahaha...I know. He's the energizer bunny. She seemed a little tired today.
Bryce will start riding the bus tomorrow. Yay! It's been such a tricky ordeal running from one district to another.
So, of course he crashed on the way home
October 7th
His ARD went really well today. I was really impressed with the services he's going to get. They will consider him deaf/blind because of the optic atrophy. He will not receive services (such as braille) but is considered guarded. They will keep a watch on his vision to determine if he does need additional services.
He will go to the Co op and unlike what I was told earlier this school year, he will go to Hancock. It's a full day preschool.
He will not initially receive ot therapy so I will pull him out at his scheduled 1pm time to get it through Texas Childrens. Tomorrow is his first day. I think going half day and half week is a great way to start.
I use to teach in this district. I do like how they have everyone locked out and you have to ring a bell to be buzzed in. It feels safer. Apparently, this has been in place a couple of years in the district. Love it!
I'm so thankful for these services to help Bryce in his learning.
Wednesday, May 28, 2014
Bryce Update: The Waiting Game
I get lots of questions about what's going on with Bryce. Unfortunately, I don't have much new news to report. I got my pediatrician to give us a neurologist referral. We see him on June 17th. The Neuro Ottologist is July 8th.
I have called to make sure we're on a cancellation list. When I talked to the receptionist, she told me to call back periodically. I asked if I would be annoying to call every day. Nope! She said that's fine.
I have been to the KIC (Klein Instructional Center) where they did a screening. Basically, we're waiting to see what the specialists have to say before we do an evaluation. He will qualify for services next year we just don't know what type of services. Will he need speech or ASL? A lot depends on what we find out at our appointments.
In the meantime, Bryce continues to have breath holding spells. I'm keep a medical journal and document them when they happen so we can see the frequency. They tend to be emotionally based. They tend to be more likely to happen if he's tired. If anyone has experienced a 3 year old and their extreme desire for independence and will, you can only imagine how this compounds the problem.
Some of his breath holding spells have been these situations:
-diaper rash (so upset, he holds his breath and passes out)
-wanting me to put his shoes on and when I try to get Brayden to help him, passes out. Apparently I'm the only one he wanted to help him.
-after the dinner prayer, he staggers to the cabinet drawer turning blue. Apparently he wasn't excited about dinner so he was fussing, stopped fussing and was turning blue. That was a pretty scary one. I'm glad he didn't pass out during the prayer and fall.
-locked the pantry to keep him out of it. Passed out.
I have found that like any other tantrum, a distraction can help. He sprayed Brielle with a water bottle that I took away. I just knew he was going to get so upset, he would pass out (it was the end of the day...I just saw it coming). I redirected him with having him help me carry food to the table. I was thankful he didn't pass out.
It's hard because he needs to be disciplined but we don't want him to pass out. It's a fine line we walk with this boy.
He drives his siblings crazy (and sometimes his parents) with his aggressive behaviors. He'll usually apologize but it's hard to believe him when he does it over and over. It really seems to be an attention seeking thing and probably compensation for loss of hearing stimulation.
I have called to make sure we're on a cancellation list. When I talked to the receptionist, she told me to call back periodically. I asked if I would be annoying to call every day. Nope! She said that's fine.
I have been to the KIC (Klein Instructional Center) where they did a screening. Basically, we're waiting to see what the specialists have to say before we do an evaluation. He will qualify for services next year we just don't know what type of services. Will he need speech or ASL? A lot depends on what we find out at our appointments.
In the meantime, Bryce continues to have breath holding spells. I'm keep a medical journal and document them when they happen so we can see the frequency. They tend to be emotionally based. They tend to be more likely to happen if he's tired. If anyone has experienced a 3 year old and their extreme desire for independence and will, you can only imagine how this compounds the problem.
Some of his breath holding spells have been these situations:
-diaper rash (so upset, he holds his breath and passes out)
-wanting me to put his shoes on and when I try to get Brayden to help him, passes out. Apparently I'm the only one he wanted to help him.
-after the dinner prayer, he staggers to the cabinet drawer turning blue. Apparently he wasn't excited about dinner so he was fussing, stopped fussing and was turning blue. That was a pretty scary one. I'm glad he didn't pass out during the prayer and fall.
-locked the pantry to keep him out of it. Passed out.
I have found that like any other tantrum, a distraction can help. He sprayed Brielle with a water bottle that I took away. I just knew he was going to get so upset, he would pass out (it was the end of the day...I just saw it coming). I redirected him with having him help me carry food to the table. I was thankful he didn't pass out.
It's hard because he needs to be disciplined but we don't want him to pass out. It's a fine line we walk with this boy.
He drives his siblings crazy (and sometimes his parents) with his aggressive behaviors. He'll usually apologize but it's hard to believe him when he does it over and over. It really seems to be an attention seeking thing and probably compensation for loss of hearing stimulation.
Sunday, May 4, 2014
Happy Tears and Sad Tears
So we have a family blog and decided to open this one up. It's probably an easier way to post updates. If you know me, you know I'm a talker. You'll probably find that in my writing as well. I'm going to try to divide this post into categories so you can skip anything that doesn't appeal to you.
When Bryce Lost his hearing- we think Bryce lost or was in the process of losing his hearing about the time our new baby, Brenlee joined our family. He was CRAZY and we thought it was just an adjustment thing. Grandma Nelson said he reminded her of a minion. So, the grandparents were here for 2 weeks and then had to go back home. It was just after this that we noticed or became suspicious that something was wrong with his hearing. He woke up from a late nap crying. I asked him if he wanted a sucker. No response. I asked him again and then Matt and I exchanged looks. Matt asked him if he wanted ice cream or a treat. No response.
Testing- While the Nelson Grandparents were here, we got a speech referral for Bryce. His speech seemed to stop progressing and I felt like Brayden spoke better at 2 than Bryce did at 3. He first saw a speech therapist for an evaluation. She wasn't able to gather enough information from observing him so she called me and we did a phone conference. At this point we weren't suspecting complete hearing loss. A week and a half later, he had an appointment with an audiologist and we felt that his hearing was gone. She said he displayed signs of hearing loss but the tests were inconclusive. We were grasping at straws to find some answers so we went to an ENT. Bryce passed the new born hearing screening test but when he clung to Matt's leg in the sound booth, he said it was behavioral. We were both shocked and frustrated! There's no way this was behavior, something he was choosing. I scheduled an appointment with the pediatrician to consult with him and hopefully get pointed in the right direction. He put in an order for an ABR test with sedation. He felt like after 2 attempts in a sound booth, it was time to get some answers. We felt the same way.
Why it wasn't behavior- As we talked to people about Bryce losing his hearing, it was frustrating to hear "are you sure he's just not distracted?" or "selective listening". I began to understand why they might say this because the whole thing was a shocker to me, it had to be to other people. I responded with, "all day?" and "you have reflexes that will make your body jump if you scare someone. If I sneak up and say BOO, he doesn't jump. If I touch him, he'll jump because he didn't know I was there." Believe me, we tested him. He stopped going to the door to the garage when he heard it open which meant Dad was home. Now when he saw Matt, he got excited and started yelling "Daddy! Daddy! Daddy!" He stopped responding to the kitchen timer like he used to do when it sounded and meant food was coming out. He wouldn't respond to Brenlee crying. If he saw her face, he tried to give her the binki. For a while, we thought he could hear some things and not others. I started testing this theory and found that his hearing was completely gone. He would scan the room and sometimes it appeared that he heard us. It was just the scanning. He loves to run to the door whenever someone comes over; he's our greeter of sorts. He stopped doing this. He started sitting really close to the tv. He started reading lips and pointing. He became more aggressive.
ABR and Diagnosis- We were able to get into Texas Childrens at the West Campus for the ABR (auditory brain response). We had to keep him up late and wake him up early so he was sleepy and he had to go fasting. They administered the medicine to him and cleaned around his ears and head for the probes. He was a champion and cooperated quite well for the nurses. They commented about how well he did for them. He really made their job easy. (My brother and his family and our ward family did a fast for him the Sunday before.) Once he fell asleep, he was placed on a bed with rails and the probes were connected. The newborn screening was performed again (which he passed in both ears) and the response to sounds as heard and signaled by the brain. He did not pass that part of the test. His ears work just fine but the nerves that lead to the brain aren't signaling. It's much like a loose wire. We don't know how long his hearing cut in and out but we have a good idea of when it stopped. He could have been born with this disorder. He was diagnosed with auditory neuropathy dis-synchrony syndrome. We were referred to a neuro-ottologist. Our appointment is set for July 8th.
Hard...but we can do hard things!- Hard. Hard doesn't even begin to touch how we've felt. With a new baby, you never know if the baby will come with complications. It's always a relief when the baby is fine. What we didn't know was our toddler wasn't fine. At some point around the time Brenlee was born, Bryce lost his hearing. We told him "baby in Mommy's tummy" and he would repeat it. He still calls her baby and hasn't learned her name is Brenlee. I'm not so sure he's ever heard her cry. The joy of a new baby and the blessing of helping hands of grandparents were soon swept aside as we faced a challenge. My c-section made it impossible to pick him up, drive him to dr appointments or go places with him. I knew post baby would be challenging because of the c-section but what I didn't expect was the hearing loss. The hearing loss brought more aggressive behavior from Bryce. Putting him in uh-oh or time out proved to be a challenge because he soon learned to drop his weight and knew I couldn't pick him up. Matt had already missed work to be at the hospital with me (you are pretty helpless after a c-section) and would miss more work as he was the one to drive him to appointments. Even after I could drive, I couldn't chase him or pick him up. It was a matter of safety so Matt would take him to the appointments or go with me. A newborn requires lots of time and a nursing newborn really requires time and attention. Broken sleep made and makes me feel like a zombie. Patience is harder but I had to dig deep. The older kids aren't so understanding of Bryce's hearing loss and aggressive behavior. Not only do they not want to play with him but they say " I don't like Bryce." Although he can't hear them, it breaks my heart to see them push him away. They also get jealous about extra affection and we try to explain that he can't hear I love you. They aren't so excited to watch signing times and try to learn sign language...at least initially. Setting up dr. appointments, playing phone tag with the nurses and waiting on referrals are frustrating. Calling back and finding messages for the nurse that never got through or getting transferred multiple times. Frustrating. (Someone commented that it's an appointment for a dr but your LIFE.) Well said! Sickness strikes. It's a head cold for Brielle but soon after Bryce's ABR, he develops fever. Brielle had low grade fever a few times but mainly a head cold. Bryce's fever keeps coming back and the head cold drops to his chest. Another trip to the pediatrician, this time a sick visit. He has bronchitis. He doesn't feel well and yells "owie, owie, owie." As I checked out, he got a sticker but not as a choice so he threw a fit. I took Brenlee to the car and came back with a stroller for him. The understanding receptionist then gave him a choice. Thomas the train did the trick. Although he has a fever, he doesn't always like the medicine. He holds his breath and passes out. We have to be careful with him because if he gets upset or hurt, he could pass out. It's not my favorite thing to see and one of our friends cried when she saw an episode. At home he doesn't feel well and wants to be held. I need a clone. Actually, a few of them. One to hold the baby, one to do laundry and cleaning, one to run errands, and one to cook. Going places can be challenging because people don't know he can't hear. At a restaurant he's loud and yelling and we get "the looks". The kind that say "can't you control your child?" He can't tell how loud he is so it's either really loud at home or really quiet. He's usually pretty loud at church. We attempt to get him enrolled in speech for school, not knowing if he'll get his hearing back or not. They want me to come up for a vision and hearing test. Ummm, not sure how that will work but ok. So, I answer a lot of questions about vision and assume his vision is good because he's relying on it heavily these days. Emotions. A roller coaster of emotions. Sometimes it's easier to keep my distance than to hear "are you okay" because sometimes I'm not okay. I try to be positive but sometimes I fail miserably. It doesn't mean you can't ask me. I just tend to keep to myself more when I'm emotionally not in a good place. It's heart breaking to see your 3 year old take your cell phone to talk to his dad, look at it, turn it over and then hand it back. He can't talk to his dad on the phone. Swim team just started and he wants to swim too. Although he's not old enough to do swim team, I'm weepy as he tells me he wants to swim. I was planning on swim lessons for him so he could swim more safely this Summer. I'm not sure how we can do lessons when he can't hear instructions. It's hard to have prayers and read scriptures and know he can't hear what's being said or read. I wake up every morning and still feel shocked that this has all happened. Is this real? I feel sad when I wonder if Bryce does the same thing. I tend to be a worrier and worry for the now and later. What if family doesn't want to learn sign language? What if we see the specialist and the option for cochlear implants isn't an option? What if it is an option and it doesn't work? It's silly but little things like not being able to volunteer for field day at school or other activities makes me feel guilty. I know there's a time and season for things but I still feel guilty. I feel guilty that it's Brielle's last time before she starts school and things I wanted to do with her have taken a backseat.
Happy Tears and Blessings- Although the last 7, almost 8 weeks have been hard, there are blessings everywhere. Tender mercies. I went to sacrament meeting today and brought Bryce home afterwards because of his bronchitis. He's still coughing and it's still in his chest. I needed to give him a breathing treatment. As I sat beside him, I reflected on our newly acquired challenge. When his hearing went, we had grandparents here to help. Matt's job is flexible and he had the ability to go to the dr appointments. Home teachers helped give a blessing. Family and our ward family have prayed and fasted. My father-in-law sent out an email to the family and expressed his faith for a miracle on Bryce's behalf. Happy tears. I heard about a little boy (Ethan) that's Bryce's age and has been praying for him. Happy tears. Help with rides, a friend brought dinner, and prayers. There are times when it should have been too hard but somehow I felt strengthened. I know there's power in prayers. I'm so thankful and feel humbled by all those that have prayed and fasted for us. Lots of happy tears. (Don't be surprised if I get weepy if you tell me about how you've been praying for us.) Strangers and acquaintances always say "I'll pray for you" and I'm thankful because more prayers are a blessing.My friend, Erika, has been such a blessing. She reminds me of my BYU roommate, Emily, that took care of me when I had strep throat. I'll never forget her kindness and it really has endeared her to me. Erika has helped in so many ways. She has lifted Bryce for me when I was in recovery mode. She changed his diaper when I could but she knew he would give me a harder time so she insisted on doing it. She has helped in countless ways and I'm thankful. As I've talked to people about it, they seem to know someone who's had a similar experience. My OB has a high risk OB that lost her hearing and has cochlear implants. My neighbor's friend lost her hearing at 30. A lady from zumba has a cousin that lost her hearing at 5 years of age and she learned sign language with her. One of the receptionist at the school has a family member that lost hearing. It's a connection, a small and distant one, but a connection. Someone has been what we're going through. Texas Children's downtown was going to take a long time to get an appointment for an ABR and there was a pre screening before the appointment. The screening wouldn't be till the middle of May. The West Campus got us in within a week. What a blessing! Brielle's head cold changed sitter plans but my Mom was able to meet us at the hospital and watch the kids (in the lobby) so I could go back for some of the testing. Bryce got sick AFTER the ABR and not before. What a blessing! I got him in to the doctor's office for his bronchitis before the weekend hit. A friend told me about signing time on PBS. It comes on at 6:30 am on Sunday mornings so we DVR it and watch it. Although learning sign adds to feeling overwhelmed, it's amazing how fast you pick it up. The kids are more eager to learn it and thinks it's cool that you can communicate without talking. Brielle really has picked it up. We've watched 3 videos and she remembers a lot. Bryce has started to use a few of them. Another friend told me about how he'll qualify for EC next year at school. This is also another burden lifted as I've also worried about him losing his language and getting further behind. They should be able to help him get caught up. Our whole family will learn another language. This is very intimidating (to me anyway because it's more of a have to than a want to) but we're willing to try. I know the Lord is aware of this situation. I know He loves Bryce and I know he loves us. I know challenges help us grow. They take us out of our comfort zone and stretch us. I also know that we're not alone and I'm thankful for a loving Heavenly Father and Savior. I have a sign in my bathroom that says " I can do hard things." I can, you can, we all can with the help of our Savior. We're working hard not to just endure but to endure this challenge well. :)
Prayers- Prayers are appreciated. Of course Bryce could use them for his condition. Our family can use them (as it does affect the whole family). July 8th is a long ways away. It would be awesome if we could get in before then. If not, we'll wait it out but it sure would be nice to get in ASAP. I'm sure there will be more tests to run and if Cochlear Implants are the solution, I'm sure it'll take time to schedule that surgery.
Resiliency- It is amazing how resilient kids and people can be. Bryce doesn't seem to let this disability hold him back. I'm so thankful. I'm not so sure I would have a good attitude about it but he sure seems to. He doesn't slow down and if anything, I think it's made him more independent. He now dresses himself. Of course I'm not so sure he's got it down completely (this morning he went "commando" style...according to Matt...and put his pants on minus his diaper) but he's trying. He put his shirts on the wrong side out and sometimes his shorts get on backwards. He still won't keep socks and shoes on his feet so they get pretty dirty. It's a good thing we have child proof latches on the front door and door to the garage because he can open the doors. If the latch isn't latched for the garage, he can get out, climb on the shelf and open the garage doors. He definitely relies on his sight a lot more than he used to. He's a mischief maker and you can see it in his eyes when he's out to get some negative attention. The kids are learning how to deal with it. He chased Brielle the other day so she hid, waited till he passed and then went the other direction. Sounds don't give you away. He has taken an interest in my phone so I apologize for random phone calls or text messages. He called my friend, Mary, and thought he was calling "Dad." It was cute and sad at the same time. I really think he must forget. I know I do a lot. I'll call for him and then remember he can't hear me. He still watches movies but of course the volume is of no importance. He still gets excited to see people and will try to talk their ears off but a lot of it is gibberish.At the end of the day, I know everything will be okay. When it rains, it pours. We're in the storm but there's a rainbow just ahead.
When Bryce Lost his hearing- we think Bryce lost or was in the process of losing his hearing about the time our new baby, Brenlee joined our family. He was CRAZY and we thought it was just an adjustment thing. Grandma Nelson said he reminded her of a minion. So, the grandparents were here for 2 weeks and then had to go back home. It was just after this that we noticed or became suspicious that something was wrong with his hearing. He woke up from a late nap crying. I asked him if he wanted a sucker. No response. I asked him again and then Matt and I exchanged looks. Matt asked him if he wanted ice cream or a treat. No response.
Testing- While the Nelson Grandparents were here, we got a speech referral for Bryce. His speech seemed to stop progressing and I felt like Brayden spoke better at 2 than Bryce did at 3. He first saw a speech therapist for an evaluation. She wasn't able to gather enough information from observing him so she called me and we did a phone conference. At this point we weren't suspecting complete hearing loss. A week and a half later, he had an appointment with an audiologist and we felt that his hearing was gone. She said he displayed signs of hearing loss but the tests were inconclusive. We were grasping at straws to find some answers so we went to an ENT. Bryce passed the new born hearing screening test but when he clung to Matt's leg in the sound booth, he said it was behavioral. We were both shocked and frustrated! There's no way this was behavior, something he was choosing. I scheduled an appointment with the pediatrician to consult with him and hopefully get pointed in the right direction. He put in an order for an ABR test with sedation. He felt like after 2 attempts in a sound booth, it was time to get some answers. We felt the same way.
Why it wasn't behavior- As we talked to people about Bryce losing his hearing, it was frustrating to hear "are you sure he's just not distracted?" or "selective listening". I began to understand why they might say this because the whole thing was a shocker to me, it had to be to other people. I responded with, "all day?" and "you have reflexes that will make your body jump if you scare someone. If I sneak up and say BOO, he doesn't jump. If I touch him, he'll jump because he didn't know I was there." Believe me, we tested him. He stopped going to the door to the garage when he heard it open which meant Dad was home. Now when he saw Matt, he got excited and started yelling "Daddy! Daddy! Daddy!" He stopped responding to the kitchen timer like he used to do when it sounded and meant food was coming out. He wouldn't respond to Brenlee crying. If he saw her face, he tried to give her the binki. For a while, we thought he could hear some things and not others. I started testing this theory and found that his hearing was completely gone. He would scan the room and sometimes it appeared that he heard us. It was just the scanning. He loves to run to the door whenever someone comes over; he's our greeter of sorts. He stopped doing this. He started sitting really close to the tv. He started reading lips and pointing. He became more aggressive.
ABR and Diagnosis- We were able to get into Texas Childrens at the West Campus for the ABR (auditory brain response). We had to keep him up late and wake him up early so he was sleepy and he had to go fasting. They administered the medicine to him and cleaned around his ears and head for the probes. He was a champion and cooperated quite well for the nurses. They commented about how well he did for them. He really made their job easy. (My brother and his family and our ward family did a fast for him the Sunday before.) Once he fell asleep, he was placed on a bed with rails and the probes were connected. The newborn screening was performed again (which he passed in both ears) and the response to sounds as heard and signaled by the brain. He did not pass that part of the test. His ears work just fine but the nerves that lead to the brain aren't signaling. It's much like a loose wire. We don't know how long his hearing cut in and out but we have a good idea of when it stopped. He could have been born with this disorder. He was diagnosed with auditory neuropathy dis-synchrony syndrome. We were referred to a neuro-ottologist. Our appointment is set for July 8th.
Hard...but we can do hard things!- Hard. Hard doesn't even begin to touch how we've felt. With a new baby, you never know if the baby will come with complications. It's always a relief when the baby is fine. What we didn't know was our toddler wasn't fine. At some point around the time Brenlee was born, Bryce lost his hearing. We told him "baby in Mommy's tummy" and he would repeat it. He still calls her baby and hasn't learned her name is Brenlee. I'm not so sure he's ever heard her cry. The joy of a new baby and the blessing of helping hands of grandparents were soon swept aside as we faced a challenge. My c-section made it impossible to pick him up, drive him to dr appointments or go places with him. I knew post baby would be challenging because of the c-section but what I didn't expect was the hearing loss. The hearing loss brought more aggressive behavior from Bryce. Putting him in uh-oh or time out proved to be a challenge because he soon learned to drop his weight and knew I couldn't pick him up. Matt had already missed work to be at the hospital with me (you are pretty helpless after a c-section) and would miss more work as he was the one to drive him to appointments. Even after I could drive, I couldn't chase him or pick him up. It was a matter of safety so Matt would take him to the appointments or go with me. A newborn requires lots of time and a nursing newborn really requires time and attention. Broken sleep made and makes me feel like a zombie. Patience is harder but I had to dig deep. The older kids aren't so understanding of Bryce's hearing loss and aggressive behavior. Not only do they not want to play with him but they say " I don't like Bryce." Although he can't hear them, it breaks my heart to see them push him away. They also get jealous about extra affection and we try to explain that he can't hear I love you. They aren't so excited to watch signing times and try to learn sign language...at least initially. Setting up dr. appointments, playing phone tag with the nurses and waiting on referrals are frustrating. Calling back and finding messages for the nurse that never got through or getting transferred multiple times. Frustrating. (Someone commented that it's an appointment for a dr but your LIFE.) Well said! Sickness strikes. It's a head cold for Brielle but soon after Bryce's ABR, he develops fever. Brielle had low grade fever a few times but mainly a head cold. Bryce's fever keeps coming back and the head cold drops to his chest. Another trip to the pediatrician, this time a sick visit. He has bronchitis. He doesn't feel well and yells "owie, owie, owie." As I checked out, he got a sticker but not as a choice so he threw a fit. I took Brenlee to the car and came back with a stroller for him. The understanding receptionist then gave him a choice. Thomas the train did the trick. Although he has a fever, he doesn't always like the medicine. He holds his breath and passes out. We have to be careful with him because if he gets upset or hurt, he could pass out. It's not my favorite thing to see and one of our friends cried when she saw an episode. At home he doesn't feel well and wants to be held. I need a clone. Actually, a few of them. One to hold the baby, one to do laundry and cleaning, one to run errands, and one to cook. Going places can be challenging because people don't know he can't hear. At a restaurant he's loud and yelling and we get "the looks". The kind that say "can't you control your child?" He can't tell how loud he is so it's either really loud at home or really quiet. He's usually pretty loud at church. We attempt to get him enrolled in speech for school, not knowing if he'll get his hearing back or not. They want me to come up for a vision and hearing test. Ummm, not sure how that will work but ok. So, I answer a lot of questions about vision and assume his vision is good because he's relying on it heavily these days. Emotions. A roller coaster of emotions. Sometimes it's easier to keep my distance than to hear "are you okay" because sometimes I'm not okay. I try to be positive but sometimes I fail miserably. It doesn't mean you can't ask me. I just tend to keep to myself more when I'm emotionally not in a good place. It's heart breaking to see your 3 year old take your cell phone to talk to his dad, look at it, turn it over and then hand it back. He can't talk to his dad on the phone. Swim team just started and he wants to swim too. Although he's not old enough to do swim team, I'm weepy as he tells me he wants to swim. I was planning on swim lessons for him so he could swim more safely this Summer. I'm not sure how we can do lessons when he can't hear instructions. It's hard to have prayers and read scriptures and know he can't hear what's being said or read. I wake up every morning and still feel shocked that this has all happened. Is this real? I feel sad when I wonder if Bryce does the same thing. I tend to be a worrier and worry for the now and later. What if family doesn't want to learn sign language? What if we see the specialist and the option for cochlear implants isn't an option? What if it is an option and it doesn't work? It's silly but little things like not being able to volunteer for field day at school or other activities makes me feel guilty. I know there's a time and season for things but I still feel guilty. I feel guilty that it's Brielle's last time before she starts school and things I wanted to do with her have taken a backseat.
Happy Tears and Blessings- Although the last 7, almost 8 weeks have been hard, there are blessings everywhere. Tender mercies. I went to sacrament meeting today and brought Bryce home afterwards because of his bronchitis. He's still coughing and it's still in his chest. I needed to give him a breathing treatment. As I sat beside him, I reflected on our newly acquired challenge. When his hearing went, we had grandparents here to help. Matt's job is flexible and he had the ability to go to the dr appointments. Home teachers helped give a blessing. Family and our ward family have prayed and fasted. My father-in-law sent out an email to the family and expressed his faith for a miracle on Bryce's behalf. Happy tears. I heard about a little boy (Ethan) that's Bryce's age and has been praying for him. Happy tears. Help with rides, a friend brought dinner, and prayers. There are times when it should have been too hard but somehow I felt strengthened. I know there's power in prayers. I'm so thankful and feel humbled by all those that have prayed and fasted for us. Lots of happy tears. (Don't be surprised if I get weepy if you tell me about how you've been praying for us.) Strangers and acquaintances always say "I'll pray for you" and I'm thankful because more prayers are a blessing.My friend, Erika, has been such a blessing. She reminds me of my BYU roommate, Emily, that took care of me when I had strep throat. I'll never forget her kindness and it really has endeared her to me. Erika has helped in so many ways. She has lifted Bryce for me when I was in recovery mode. She changed his diaper when I could but she knew he would give me a harder time so she insisted on doing it. She has helped in countless ways and I'm thankful. As I've talked to people about it, they seem to know someone who's had a similar experience. My OB has a high risk OB that lost her hearing and has cochlear implants. My neighbor's friend lost her hearing at 30. A lady from zumba has a cousin that lost her hearing at 5 years of age and she learned sign language with her. One of the receptionist at the school has a family member that lost hearing. It's a connection, a small and distant one, but a connection. Someone has been what we're going through. Texas Children's downtown was going to take a long time to get an appointment for an ABR and there was a pre screening before the appointment. The screening wouldn't be till the middle of May. The West Campus got us in within a week. What a blessing! Brielle's head cold changed sitter plans but my Mom was able to meet us at the hospital and watch the kids (in the lobby) so I could go back for some of the testing. Bryce got sick AFTER the ABR and not before. What a blessing! I got him in to the doctor's office for his bronchitis before the weekend hit. A friend told me about signing time on PBS. It comes on at 6:30 am on Sunday mornings so we DVR it and watch it. Although learning sign adds to feeling overwhelmed, it's amazing how fast you pick it up. The kids are more eager to learn it and thinks it's cool that you can communicate without talking. Brielle really has picked it up. We've watched 3 videos and she remembers a lot. Bryce has started to use a few of them. Another friend told me about how he'll qualify for EC next year at school. This is also another burden lifted as I've also worried about him losing his language and getting further behind. They should be able to help him get caught up. Our whole family will learn another language. This is very intimidating (to me anyway because it's more of a have to than a want to) but we're willing to try. I know the Lord is aware of this situation. I know He loves Bryce and I know he loves us. I know challenges help us grow. They take us out of our comfort zone and stretch us. I also know that we're not alone and I'm thankful for a loving Heavenly Father and Savior. I have a sign in my bathroom that says " I can do hard things." I can, you can, we all can with the help of our Savior. We're working hard not to just endure but to endure this challenge well. :)
Prayers- Prayers are appreciated. Of course Bryce could use them for his condition. Our family can use them (as it does affect the whole family). July 8th is a long ways away. It would be awesome if we could get in before then. If not, we'll wait it out but it sure would be nice to get in ASAP. I'm sure there will be more tests to run and if Cochlear Implants are the solution, I'm sure it'll take time to schedule that surgery.
Resiliency- It is amazing how resilient kids and people can be. Bryce doesn't seem to let this disability hold him back. I'm so thankful. I'm not so sure I would have a good attitude about it but he sure seems to. He doesn't slow down and if anything, I think it's made him more independent. He now dresses himself. Of course I'm not so sure he's got it down completely (this morning he went "commando" style...according to Matt...and put his pants on minus his diaper) but he's trying. He put his shirts on the wrong side out and sometimes his shorts get on backwards. He still won't keep socks and shoes on his feet so they get pretty dirty. It's a good thing we have child proof latches on the front door and door to the garage because he can open the doors. If the latch isn't latched for the garage, he can get out, climb on the shelf and open the garage doors. He definitely relies on his sight a lot more than he used to. He's a mischief maker and you can see it in his eyes when he's out to get some negative attention. The kids are learning how to deal with it. He chased Brielle the other day so she hid, waited till he passed and then went the other direction. Sounds don't give you away. He has taken an interest in my phone so I apologize for random phone calls or text messages. He called my friend, Mary, and thought he was calling "Dad." It was cute and sad at the same time. I really think he must forget. I know I do a lot. I'll call for him and then remember he can't hear me. He still watches movies but of course the volume is of no importance. He still gets excited to see people and will try to talk their ears off but a lot of it is gibberish.At the end of the day, I know everything will be okay. When it rains, it pours. We're in the storm but there's a rainbow just ahead.
Subscribe to:
Posts (Atom)
