We took Bryce off fruits and fruit juices for two weeks. He could have limited vegetables. We didn't really feel like it made a difference; his stools were still loose. He started sneaking fruit. He went to the office and hid to eat a banana. He went to my bathroom for something else. He wanted fruit so bad and it was hard to keep it from him.He was also on a laxative once a day. It's weird but she said sometimes there's a blockage and it causes looser stools. He did have a blockage.
Now, the dr. wants to do a colonoscopy and upper endoscopy to see what the problem may be. He has another scan to make sure the blockage has cleared.
Wednesday, January 28, 2015
Responses
Bryce's teachers have seen responses for a while. I've been pretty skeptical but I saw some the other day. He was playing at the lego table and when I knocked on the door to the garage, he turned around. He did this twice. I felt like he heard it. He's done things here and there that seem like maybe he did hear it.
Bryce can be so...intense
Bryce is like opening a package. You never know what you'll get. Some days when he comes off the bus, he's excited to see me and pleasant. Some days, he seems happy to see me initially but then starts into a tantrum. He's usually asleep when he arrives home so maybe that is a factor. I don't know.
We've been trying to get out and enjoy the nice weather. We've been biking around the pond. Yesterday he decided two laps was good and he was done. He took off. I got him and put him back in the stroller. So, he stepped into mud. Then I put him back into the stroller and he kicked me. How awesome that he got mud all over my white pants. I could feel steam coming out of my ears (just like on the cartoons). I was ready to hang him by his toes. I have to take deep breaths. Sometimes I have to take a lot of them. He can really push my buttons. I tried to keep my space at scouts later that night but he wanted to sit right by me. Oh he sure tries my patience but he's really sweet and loving and I'm thankful for it.
We've been trying to get out and enjoy the nice weather. We've been biking around the pond. Yesterday he decided two laps was good and he was done. He took off. I got him and put him back in the stroller. So, he stepped into mud. Then I put him back into the stroller and he kicked me. How awesome that he got mud all over my white pants. I could feel steam coming out of my ears (just like on the cartoons). I was ready to hang him by his toes. I have to take deep breaths. Sometimes I have to take a lot of them. He can really push my buttons. I tried to keep my space at scouts later that night but he wanted to sit right by me. Oh he sure tries my patience but he's really sweet and loving and I'm thankful for it.
"L" is "W" Now
Brayden consistently says ""W" for his "L". He says "wittle and wegos" instead of "little and legos". Poor kid. It's so interesting to see his speech become corrupted. Maybe this is a stretch, but I thought about how we could liken this to hearing the word of God. We can have a strong foundation but if remove ourselves or lessens Heavenly Father's influence in our life, we become weaker or corrupt.
Of course he has no control over it. We still continue to hope and pray he will be able to retain his hearing long enough to adjust to a CI. Hopefully it'll be a smoother transition for him.
Of course he has no control over it. We still continue to hope and pray he will be able to retain his hearing long enough to adjust to a CI. Hopefully it'll be a smoother transition for him.
Another CI Setback and Equipment Issues
We were at the table for dinner the other night and Bryce was up and running around. His battery detached from the processor. It turned out to be a blessing because Matt and I had a conversation that we needed to have that apparently I forgot. Every time his battery is detached on the Naida, we need to program it. So, I thought he was on 3 but really, it was 1. Not again! It was almost like starting over but not quite.
We also have had issues with his equipment. I think a lot of it is he's hard on it. The first broken cable was b/c he was chewing on it and then pulled the plug off. The second cable was because he was swinging it around on the bus. We have learned to remove the device when we're in the car or on the bus. They are kind enough to send us replacements. I wanted an extra, you know, a back up. I was told it was 125. I asked $1.25 or $125. It's $125...yikes. So, they're letting me switch the shorter cable for a second, longer cable for the shoulder clip.
Oh, remember that detaching battery. It did it again. So, they sent us another one. We need to see if it's the battery or if it's the processor. Hopefully we'll get it figured out soon.
Wednesday, January 21, 2015
Bryce's CI Setback
Bryce has two devices. One is the Neptune (the water proof device) and the other is the Naida. The Naida kept falling off his ear so we used the Neptune. When I took him in on Thursday, she didn't get responses that she hoped for. Come to find out, the device was faulty. Crazy! So, it was almost like starting over b/c it wasn't working correctly. We used the shoulder clip on the Naida until Bryce chewed the cord that reaches it and then broke it altogether. (Note to self: bring something to entertain that boy on our long ride to and from the doctors.)
My Mom thought Bryce seemed to respond when he heard the doorbell. We tried it but I didn't see a response. Maybe it was too loud when we tried again. It was just her and him when he seemed to look up as though he heard it.
Today, I knocked on the garage door and he turned around. He was playing with legos and really into what he was doing. I did it again, and again, he turned around. I've been pretty skeptical but I felt very giddy with excitement to see a response. :)
My Mom thought Bryce seemed to respond when he heard the doorbell. We tried it but I didn't see a response. Maybe it was too loud when we tried again. It was just her and him when he seemed to look up as though he heard it.
Today, I knocked on the garage door and he turned around. He was playing with legos and really into what he was doing. I did it again, and again, he turned around. I've been pretty skeptical but I felt very giddy with excitement to see a response. :)
Tuesday, January 20, 2015
Brayden's Speech and Language Evaluation
Yesterday Brayden had one of his big appointments downtown. We have one big appointment left and he will complete the CI process. The speech and language eval was looonnnng. Basically, the more you know, the longer it takes so it was a good thing. It was cool to watch but did drag on a bit. She asked if he loves to read b/c he went above his age range. Yes, yes he does.
In many ways I feel overwhelmed with his hearing loss b/c I don't have that complex vocabulary for signing that he has in English. As it is, Bryce is picking up language through ASL but not at the rate most kids his age are able to. It all has to do with language rich environment. Unfortunately, my ASL and English are not equally yoked. I'm hoping to get there some day but it would be more useful now.
We have noticed articulation has taken a hit with hearing loss. Brayden doesn't speak as clearly and will actually "baby talk" on purpose. I think he's doing this more as a protection thing bc he knows there's changes and I think he's a little conscious about them. This is where my Mama heart hurts for him.
The Speech and Language administrator recognizes that he works hard making sense of his environment. He does take all the clues around him and compensates. While I wouldn't choose this for him, I'm so proud of him. He, like Bryce, is handling this life change with grace. Some day, I know he will reap major blessings because of it.
In many ways I feel overwhelmed with his hearing loss b/c I don't have that complex vocabulary for signing that he has in English. As it is, Bryce is picking up language through ASL but not at the rate most kids his age are able to. It all has to do with language rich environment. Unfortunately, my ASL and English are not equally yoked. I'm hoping to get there some day but it would be more useful now.
We have noticed articulation has taken a hit with hearing loss. Brayden doesn't speak as clearly and will actually "baby talk" on purpose. I think he's doing this more as a protection thing bc he knows there's changes and I think he's a little conscious about them. This is where my Mama heart hurts for him.
The Speech and Language administrator recognizes that he works hard making sense of his environment. He does take all the clues around him and compensates. While I wouldn't choose this for him, I'm so proud of him. He, like Bryce, is handling this life change with grace. Some day, I know he will reap major blessings because of it.
Monday, January 19, 2015
Influence
When Bryce first lost his hearing, I had great concern about how he was going to learn the gospel. I also had concern about his academic learning and communication but the thing that bothered me most, was how to include him. How were we going to include him in scripture stories? How would be include him in prayer? I felt this separation and I'm pretty sure he did as well.
We invited the ASL missionaries to our home and asked them to teach us to pray in sign language. I asked my friend Nicole for some of the words and she would made a video of her signing "Heavenly Father" and sent it to me on my phone. We started attending the Fallbrook (deaf) branch and going to a signing class. Little by little, we have made progress.
I still find myself concerned about Bryce. I told his teacher( by the way, she's awesome and goes out of her way to help Bryce succeed) that he doesn't participate in prayer with us. If we ask him to say or copy a prayer, he won't do it. He did it a couple of times but won't do it anymore. She suggested having everyone sign the prayer or copy the person that's signing it. What a great idea!
So, we just implemented this idea. I think he's more shocked right now and still continues to watch. If anything, it certainly reinforces it because no matter where he looks, he'll see someone signing the prayer.
I found a statue of a woman on her knees praying. I showed it to him last night and put it next to another statue I have of a woman praying. I showed him they are praying to Heavenly Father. He can't make a "y" with his fingers so he uses his other hand to bend the fingers to make the y and then shake it to say "the same". It touched me that he recognized this. I was so glad I had purchased this statue and so glad he had taken an interest in it.
I laid by him for a few minutes last night. Usually Matt says their night time prayers with them. I was surprised when Bryce tapped me, got on his knees and made the prayer sign. He didn't copy all of the prayer but did a few words. After a rough couple of days with him, this sweet moment touched me. He is picking up on the little details. He knows prayer is important to me and he's learning it's important to him. I'm thankful for teaching moments but also for those moments when you see that they got it.
We invited the ASL missionaries to our home and asked them to teach us to pray in sign language. I asked my friend Nicole for some of the words and she would made a video of her signing "Heavenly Father" and sent it to me on my phone. We started attending the Fallbrook (deaf) branch and going to a signing class. Little by little, we have made progress.
I still find myself concerned about Bryce. I told his teacher( by the way, she's awesome and goes out of her way to help Bryce succeed) that he doesn't participate in prayer with us. If we ask him to say or copy a prayer, he won't do it. He did it a couple of times but won't do it anymore. She suggested having everyone sign the prayer or copy the person that's signing it. What a great idea!
So, we just implemented this idea. I think he's more shocked right now and still continues to watch. If anything, it certainly reinforces it because no matter where he looks, he'll see someone signing the prayer.
I found a statue of a woman on her knees praying. I showed it to him last night and put it next to another statue I have of a woman praying. I showed him they are praying to Heavenly Father. He can't make a "y" with his fingers so he uses his other hand to bend the fingers to make the y and then shake it to say "the same". It touched me that he recognized this. I was so glad I had purchased this statue and so glad he had taken an interest in it.
I laid by him for a few minutes last night. Usually Matt says their night time prayers with them. I was surprised when Bryce tapped me, got on his knees and made the prayer sign. He didn't copy all of the prayer but did a few words. After a rough couple of days with him, this sweet moment touched me. He is picking up on the little details. He knows prayer is important to me and he's learning it's important to him. I'm thankful for teaching moments but also for those moments when you see that they got it.
Bryce can be Intense
Thursday I picked Bryce up from school for his CI appointment. He had been twice and it was a week later so we were going for another mapping session. Matt is playing catch up at work so I took the double stroller along with me. Bryce fell asleep in the car so the stroller was very handy as he was asleep when we arrived. Our timing was good and everything seemed to go well. He even woke up when we arrived at the waiting area.
We went to the sound booth and there didn't seem to be responses. I've been skeptical because I really haven't seen anything that's made me feel like he's heard me. It was apparent that there really weren't responses so we went to Dr. Ford's office. She tested the device and the Neptune (the water proof device) appeared to be faulty. It's supposed to beep when it's not attached. This should have been a heads up for us because it didn't do that. So, we've got to send it back.
She tried programming the other device. Bryce seemed to cooperate but it was short lived. He wanted to run around the room but her cable from the lap top to his device is only so long. I had to restrain him. He tried to bite me and kick me. It was frustrating. When Bryce acts like this, it just drains me on so many levels.
We finally got finished up and she said to go ahead and come back in two weeks instead of a month bc we had that set back. She said, "Bryce, you're worrying me" when we first went back to her office. Hopefully it was the faulty device and not him. We're still so hopeful it's going to work well.
We chilled in the lobby for a few minutes while I nursed Brenlee (she had been so patient while we waited) and then we went to the elevators. He did okay but when we got to the parking garage, he tried to bolt into the parking lot. I had to chase him and return him to the stroller a couple of times. We made it to the car and then he hopped up and bolted off. A car could have hit him if one had been coming.
As we drove home, I saw him in the mirror and was horrified to see him chewing on his CI cable. It was hard to turn around but I used my water bottle to tap his legs. After three times, he stopped chewing it. I do think he gets bored and looks for ways to entertain himself. Unfortunately, he doesn't always make the best choices.
He was on one that day because when we got home, he was all about irritating his siblings. It's hard when he does this because he can be so loving but when the pestering happens, you forget all about how loving he can be.
Friday I carried him to the bus (lately he wants to be carried...it's not my favorite as he's a pretty hefty kid) and he kicked the whole way there. As much as I love that boy, I'm thankful for school. It gives us both a break. After school, he was asleep on the bus. When I picked him up, he said, "Mom!" and seemed sweet until he started kicking and throwing a tantrum again. Like most kids, he saves most of his tantrums for me and not as much for other people. I'm glad it's that way but I wish there were less for me.
I had to carry him in, close the door and let him throw a ten minute tantrum by the door.
Saturday morning Bryce brought us a broken CI cord. Seriously? He popped the plug off and bare wire was showing. Looks like we get to order a new cable too. So, for now, he's wearing a knee high tied around his head (rambo style) with the clip attached to it. Oh boy!
Matt's cousin, Caleb, came to visit on Saturday. I visited briefly and then made my escape. We all know Moms (and Dads) need breaks. I needed a big one so Saturday was an all day get away...or pretty close. When I came home that evening, Caleb talked about how Bryce is a sweet, but intense kid. Yes, intense is the word that sums him up. He spoke about his energy. Yes, I know all about it. I need to tap into it somehow. I have to make sure he doesn't zap all my energy so I still have some left for the other kids.
Thursday, January 15, 2015
Trying not to be a Skeptic
Bryce's CI audiologist and his teachers seem to be getting responses with his CI. I haven't seen one yet. I've seen him respond to them but haven't been convinced that "sound" triggered his response. I want to jump right in and celebrate but I'm reluctant. It's been a long road and an even longer road is ahead.
He seems content to wear it and he does use it as leverage. As soon as he's upset, he rips it off. We knew this would happen. It's his way of throwing a tantrum.
He seems content to wear it and he does use it as leverage. As soon as he's upset, he rips it off. We knew this would happen. It's his way of throwing a tantrum.
Brayden's CI Process
After what has been forever, okay maybe not forever but 90 days, we got Brayden's last appointment scheduled. I had to call and call and nag and report the problem to another doctor and finally, I got the call to schedule. February 9th is the last appointment and then he should be ready to be scheduled for his CI. We're really hoping to have it before he completely loses his hearing. It would be nice to start adjusting while still having some hearing ability. It still saddens me to wonder, when his world goes quiet, if he'll ever hear us again. I sure hope so!
Brayden's Audiogram and Neuropathy
Brayden has seemed to not hear as well. His teachers noticed this as did the district audiology specialist. I, too, have noticed this at home. Just before the break, the school performed an audiogram that showed him at 20%. I took him to the West Campus in Katy, yesterday, and he was 50%, just like his initial one in September. It's the nature of the beast--neuropathy. He has good days and bad days. Even on his good days, hearing is a struggle.
Wednesday, January 7, 2015
GI and Occupational Therapy
We finally got into a GI doctor (my pediatrician drug his feet on that referral) and we had to collect some stool samples. Bryce has had very loose stools for what seems like forever. I received a call yesterday that there's evidence of malabsorption of carbohydrates. The dr. is pulling him off all fruits and juice for 2 weeks. During this time he's taking a laxative. We had to give it to him 3 times a day for 3 days initially. (He had a blowout Sunday at church. I didn't have spare clothes so he had to wear his shirt and a diaper. He also has a pretty bad leg rash from all the fun blowouts. Poor kid.) So, we looked up the malabsorption and it seems to be more pieces to the puzzle. It fits with the wolfram syndrome but then again, we still are waiting to hear more about it.
The district's occupational therapist called today. She talked to me about Bryce and observing him. They feel it's best to have a helmet for him. Instead of keeping him from playing, he needs practice running, climbing and learning balance. I agree and never thought about a helmet but I think it's a great idea. She wanted some background on him so I told her about his breath holding and the hearing loss process. I told her about the genetic flag that we're waiting to get more information. She said his vestibular system was most likely affected and he does better to run than to walk or stand still. It's easier to control running. I told her I've noticed he's unstable when he's standing still yet he ran off the curb last night after the scouts activity. I cringed bc I thought for sure he would fall. He didn't even stumble. So crazy!
So, getting more answers but still waiting for more.
The district's occupational therapist called today. She talked to me about Bryce and observing him. They feel it's best to have a helmet for him. Instead of keeping him from playing, he needs practice running, climbing and learning balance. I agree and never thought about a helmet but I think it's a great idea. She wanted some background on him so I told her about his breath holding and the hearing loss process. I told her about the genetic flag that we're waiting to get more information. She said his vestibular system was most likely affected and he does better to run than to walk or stand still. It's easier to control running. I told her I've noticed he's unstable when he's standing still yet he ran off the curb last night after the scouts activity. I cringed bc I thought for sure he would fall. He didn't even stumble. So crazy!
So, getting more answers but still waiting for more.
Day 1 or Start Up Day
Today we took Bryce to get his cochlear implant turned on. The audiologist is super sweet and highly positive. We feel like the specialist gives us more of a bottom up perspective and she is much more hopeful.
We were told not to look at the youtube videos. I've seen some of them and they are amazing. I pulled out my camera to record his response but it was pretty vague. He seemed to hear her clap but also seemed pretty interested in the toy he was playing with. We really won't know for a while I think. Right now, he can't hear speech, just really loud sounds.
The fire alarm was going off when we were leaving. I thought for sure he would hear it but if he did, he didn't seem to respond. We still have a long road ahead with frequent adjustments and speech therapy.
We were told not to look at the youtube videos. I've seen some of them and they are amazing. I pulled out my camera to record his response but it was pretty vague. He seemed to hear her clap but also seemed pretty interested in the toy he was playing with. We really won't know for a while I think. Right now, he can't hear speech, just really loud sounds.
The fire alarm was going off when we were leaving. I thought for sure he would hear it but if he did, he didn't seem to respond. We still have a long road ahead with frequent adjustments and speech therapy.
Sunday, January 4, 2015
Countdown to 2015
One of our activities for the New Year count down (at 10pm) was to list 10 blessings. It's such a blessing to live today. We have some of the best doctors and some of the best technology. 2014 proved to be a year where we needed medical help. It all started with the birth of Brenlee and then came the hearing loss,arrhythmia,genetic testing, more hearing loss,a cochlear implant, more genetic testing and even more genetic testing.( We were able to get Brayden in at the very end of the year. Yes!) We felt like we were outside of Noah's ark (drowning) when everything happened, one right after another. Hard. Hard doesn't even begin to touch it. It's an understatement really. I'm not sure I can ever paint a true depiction of what we experienced in 2014. I do know that there's no way we would have survived it without the help of our Savior. We feel blessed to have survived 2014. The saying, "what doesn't kill you will make you stronger" is something we heard a lot. We do feel stronger. Experiences stretch us and we did a lot of stretching. The one thing we were sad about as 2014 came to a close, our deductible reset. hahaha
Now a new year has started. We have made adjustments and we're confident that with the Lord at our side, we can handle anything. I was reflecting on the year and all its craziness. I remember feeling worried when Bryce lost his hearing. How would I teach him the gospel? How would we pray? read scriptures? The deaf branch has been a blessing. Truly the Lord prepares a way for us. It's not always easy to bounce between our ward and the branch but I think we're getting used to it. We did have a time change with our ward (9am) and the branch's 12:20 remains the same. Somehow I think we might make it to the branch more often. hahaha Bryce started the year as a Sunbeam and while we're excited we were nervous. He loves nursery and has done well in it. He was also one of the oldest kids (a February birthday) in nursery so we didn't want him to stay extra time. His sweet friend, Henry, is in his class. His parents were called to the branch about the time we started going. We feel it's more than a coincidence. He knows some sign and was helping Bryce during class. :)
Our ward has been supportive as well. It touched us that Brielle was given a signing and talking part for the Primary program. One of Brayden's scout leaders inquired about the signing class. She wants to learn sign to communicate with the kids. I was really touched by this because there's only a few family members that have expressed interest.
I'm thankful for my busy bodies (although it's exhausting at times) and for what they teach me. We've been to plenty of doctor appointments and have seen plenty of sick children. Some of them are quite lethargic (not like kids should be) and it's heartbreaking. There's a lot of unknown about the boys (we're not sure if this will effect the girls later as well) and whether they will have more than hearing loss. Bryce has balance and bowel issues that Brayden doesn't seem to have as well as optic atrophy. We do know that these boys are doing hard things and they're doing them well. Bryce is a little elf just as happy about simple things as he can be. I get told by district personnel how well Brayden is doing for what he's going through. These boys are such great examples to us of how to endure and to endure well the challenges of life.
Now a new year has started. We have made adjustments and we're confident that with the Lord at our side, we can handle anything. I was reflecting on the year and all its craziness. I remember feeling worried when Bryce lost his hearing. How would I teach him the gospel? How would we pray? read scriptures? The deaf branch has been a blessing. Truly the Lord prepares a way for us. It's not always easy to bounce between our ward and the branch but I think we're getting used to it. We did have a time change with our ward (9am) and the branch's 12:20 remains the same. Somehow I think we might make it to the branch more often. hahaha Bryce started the year as a Sunbeam and while we're excited we were nervous. He loves nursery and has done well in it. He was also one of the oldest kids (a February birthday) in nursery so we didn't want him to stay extra time. His sweet friend, Henry, is in his class. His parents were called to the branch about the time we started going. We feel it's more than a coincidence. He knows some sign and was helping Bryce during class. :)
Our ward has been supportive as well. It touched us that Brielle was given a signing and talking part for the Primary program. One of Brayden's scout leaders inquired about the signing class. She wants to learn sign to communicate with the kids. I was really touched by this because there's only a few family members that have expressed interest.
I'm thankful for my busy bodies (although it's exhausting at times) and for what they teach me. We've been to plenty of doctor appointments and have seen plenty of sick children. Some of them are quite lethargic (not like kids should be) and it's heartbreaking. There's a lot of unknown about the boys (we're not sure if this will effect the girls later as well) and whether they will have more than hearing loss. Bryce has balance and bowel issues that Brayden doesn't seem to have as well as optic atrophy. We do know that these boys are doing hard things and they're doing them well. Bryce is a little elf just as happy about simple things as he can be. I get told by district personnel how well Brayden is doing for what he's going through. These boys are such great examples to us of how to endure and to endure well the challenges of life.
Brayden's Audiogram and Class Party
Brayden appears to have lost more hearing. Bryce's school is AWESOME and they are fully equipped when it comes to working with hearing loss. The last day of school, before the break, I was telling them how we needed an audiogram. (I was at Bryce's class party.) Just like that, they said "bring him over." So, I drove to his school, checked him out and we got an audiogram.
Brayden doesn't hear well enough in his left ear to understand words anymore. His right ear has 20% left. It's been very evident that his hearing loss has progressed. We're in a difficult situation. Bryce wasn't even in school and his hearing loss set him behind his peers, but it was a pretty obvious decision. Brayden has more advanced language. If he jumps into deaf ed, he'll have some set backs because of his lack of ASL. On the other hand, he can only progress so far in a hearing classroom. We're still unsure what course to pursue. I'm working with district specialists but a decision has not been made as to what will happen in the immediate future. Of course if there's complete hearing loss, it will change everything.
We try to sign as much as we can to Brayden to give him that added support. Otherwise, he does a lot of guessing. It's almost like a rhyming game. He hears what sounds like one thing. We've had frustrations bc it seems like he's ignoring you. We finally had to decide to treat him as though he didn't have any hearing because with neuropathy, he doesn't at times.
It was fun to go up for his class party. I got to be a co room Mom and I really enjoyed it. It broke my heart as he had some misunderstanding with one of the games (he's highly competitive) and broke down in tears. Noisy environments are hard because it really prevents him from hearing speech. When we go to restaurants, we really can't talk to him.
Brayden doesn't hear well enough in his left ear to understand words anymore. His right ear has 20% left. It's been very evident that his hearing loss has progressed. We're in a difficult situation. Bryce wasn't even in school and his hearing loss set him behind his peers, but it was a pretty obvious decision. Brayden has more advanced language. If he jumps into deaf ed, he'll have some set backs because of his lack of ASL. On the other hand, he can only progress so far in a hearing classroom. We're still unsure what course to pursue. I'm working with district specialists but a decision has not been made as to what will happen in the immediate future. Of course if there's complete hearing loss, it will change everything.
We try to sign as much as we can to Brayden to give him that added support. Otherwise, he does a lot of guessing. It's almost like a rhyming game. He hears what sounds like one thing. We've had frustrations bc it seems like he's ignoring you. We finally had to decide to treat him as though he didn't have any hearing because with neuropathy, he doesn't at times.
It was fun to go up for his class party. I got to be a co room Mom and I really enjoyed it. It broke my heart as he had some misunderstanding with one of the games (he's highly competitive) and broke down in tears. Noisy environments are hard because it really prevents him from hearing speech. When we go to restaurants, we really can't talk to him.
Protecting the Implant, Follow up and Turning it on
Bryce has balance issues. We know this, his teachers know this, the specialist knows this and pretty much anyone that meets him can see it. When he came home from the hospital, we were told that he could take the cone off. After following him around for a few minutes, NO WAY! We kept it on for quite a while. Even still, he managed to fall so many times. The worst was when he tripped over a pumpkin and face planted on the cement. He doesn't look before he moves and most of the time he moves full speed ahead. So, it's been a challenge for us to protect him. I wish we had a bubble suit. I'm not even kidding.
We met with Dr. W on the 30th and he thinks everything looks good. We had more questions about Brayden than we did for Bryce. He reminded us to protect the implant. This upcoming Wednesday is the big day. The audiologist will turn on the device. We want to be hopeful but we're scared to get our hopes up too much.
I did attend Bryce's holiday party and met another Mom. Her daughter had a C.I. just like Bryce and by the same doctor. He said the same thing to them but yet her daughter has benefit from it. Dr. W. did say although they didn't get the response they hoped for, they do expect to see some benefit. The little girl in his class can hear blocks shaking and she can hear her name. Bryce's teacher is amazing and so encouraging. She's let me know that if she had deaf children she would do exactly what we're doing. It will give them the opportunity to maybe hear.
Some don't believe in CIs but it's a choice everyone has to make for themselves. In our situation, our children had hearing and lost and are losing it. Why wouldn't we want to restore it? We also appreciate learning sign and it's a part of our family now.
Matt and I were talking about it on our way to church this morning. At this point, we have adjusted to having a deaf child. If the CI doesn't work, well, life will continue as is. If it does work, then that's great too.
We met with Dr. W on the 30th and he thinks everything looks good. We had more questions about Brayden than we did for Bryce. He reminded us to protect the implant. This upcoming Wednesday is the big day. The audiologist will turn on the device. We want to be hopeful but we're scared to get our hopes up too much.
I did attend Bryce's holiday party and met another Mom. Her daughter had a C.I. just like Bryce and by the same doctor. He said the same thing to them but yet her daughter has benefit from it. Dr. W. did say although they didn't get the response they hoped for, they do expect to see some benefit. The little girl in his class can hear blocks shaking and she can hear her name. Bryce's teacher is amazing and so encouraging. She's let me know that if she had deaf children she would do exactly what we're doing. It will give them the opportunity to maybe hear.
Some don't believe in CIs but it's a choice everyone has to make for themselves. In our situation, our children had hearing and lost and are losing it. Why wouldn't we want to restore it? We also appreciate learning sign and it's a part of our family now.
Matt and I were talking about it on our way to church this morning. At this point, we have adjusted to having a deaf child. If the CI doesn't work, well, life will continue as is. If it does work, then that's great too.
Bryce's Cochlear Implant
December 8th was the big day. We were so blessed to have friends watch the kids for us while we were downtown. Traffic is always crazy and it was a little crazy but we made it. (Surprisingly I even beat Matt after I dropped Brenlee off with a friend.)
Bryce didn't have a clue what was going to happen and how could we really explain. Matt went back with him while they sedated him and then we waited and waited and waited. While we were waiting, we went to do our blood draw for genetic testing. There were 3 rounds of tests and the second round, the one for wolfram syndrome, was flagged with a gene that has a variance on it. We're not sure if this is just something they came across or if the gene is actually manifesting itself with Bryce. They've never seen a variance like it, so, they wanted to test us for more information.
Wolfram syndrome, also called DIDMOAD (Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy, and Deafness), is a rare genetic disorder, causing diabetes mellitus, optic atrophy, and deafness as well as various other possible disorders.
They've thought it could be mitochondrial and it's interesting that it can mimic some mitochondrial symptoms. Wolfram syndrome was initially thought to be caused by mitochondrial dysfunction due to its symptoms and several reports of mitochondrial mutations. However, it has now been established that Wolfram syndrome is caused by endoplasmic reticulum dysfunction. ( http://en.wikipedia.org/wiki/Wolfram_syndrome)
The doctor came out and let us know that the procedure went well. There's always the risk of hitting a facial nerve and that went fine. He turned on the device to make sure it works appropriately and it did but his response to it wasn't the 'response we hoped for.' We felt disappointed when we heard this but we knew and know that it's a shot but there might not be a change.
He said they typically don't keep older kids over night but since Bryce has a balance issue, they wanted to keep him. It turned out to be a pretty crazy ordeal b/c he didn't care for the iv and had a breath holding spell.
Bryce didn't have a clue what was going to happen and how could we really explain. Matt went back with him while they sedated him and then we waited and waited and waited. While we were waiting, we went to do our blood draw for genetic testing. There were 3 rounds of tests and the second round, the one for wolfram syndrome, was flagged with a gene that has a variance on it. We're not sure if this is just something they came across or if the gene is actually manifesting itself with Bryce. They've never seen a variance like it, so, they wanted to test us for more information.
Wolfram syndrome, also called DIDMOAD (Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy, and Deafness), is a rare genetic disorder, causing diabetes mellitus, optic atrophy, and deafness as well as various other possible disorders.
They've thought it could be mitochondrial and it's interesting that it can mimic some mitochondrial symptoms. Wolfram syndrome was initially thought to be caused by mitochondrial dysfunction due to its symptoms and several reports of mitochondrial mutations. However, it has now been established that Wolfram syndrome is caused by endoplasmic reticulum dysfunction. ( http://en.wikipedia.org/wiki/Wolfram_syndrome)
The doctor came out and let us know that the procedure went well. There's always the risk of hitting a facial nerve and that went fine. He turned on the device to make sure it works appropriately and it did but his response to it wasn't the 'response we hoped for.' We felt disappointed when we heard this but we knew and know that it's a shot but there might not be a change.
He said they typically don't keep older kids over night but since Bryce has a balance issue, they wanted to keep him. It turned out to be a pretty crazy ordeal b/c he didn't care for the iv and had a breath holding spell.
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