Implant activation

I have done this before, where I watch a child get their implant turned on.  It never ceases to loose its wonder at what a miracle these implants are.  I got teary eyed as I watched my boy get sound in that left ear.  He was so excited.

Yesterday when we got the final check up from the surgeon and were handed our briefcase full of implant goodies, it was like Christmas morning.  We actually stopped in the hallway of the hospital so we could open up the briefcase and look at all the good things inside.  My son looked like a kid on Christmas morning.  He would lift various boxes out and I would tell them what they were.  He wanted to take the implant out and wear it so he could get used to it before our appointment the next day.  I had him wait.  When I dropped him off at cub scouts after the doctor's visit, he wanted to show all of his fellow cubs his loot.  The cub scouts ooh'd and ahh'd as they were shown remote controls that can be used for the implant and the aqua+ accessories that would make it possible to hear underwater.  The cub scouts naturally did not understand what all of that meant, but the cub scout leaders asked about the aqua+ and were impressed that now my boys could hear under the water while they swim.  I told the boys that now the ear was bionic.  That was impressive to them.

We almost made the same hotel mistake we made with Chance a few years ago....that is we almost let our deaf child go into the ONE bathroom that we all share and lock the door.  Deaf kids can't hear anything in a bathroom with a locked door and no hearing devices on.  Therefore, they have control over the entire family who may need to use the facilities or get in to shower themselves.  You can't knock on the door and tell them to hurry or to get out.  They just get out when they are good and ready and can't hear any pleas for bathroom use.  Luckily, our hotel bathroom door had a glitch that wouldn't let it close all of the way.  It would close most of the way, but you could open it if you pushed on it.

I wonder what would happen if we knocked on the door of the people in the next door to us in the hotel and told them,"Our deaf child has taken over our bathroom and he can't hear us so can we use your facilities right quick?


(Come back tomorrow for pictures...)

Surgery and the mummy wrap

You can see that he got his hearing aid back right after surgery so he could communicate.

Here is our boy right after surgery.  Once he went back to surgery, we all sat in the designated room for relatives waiting for loved ones in surgery and well, waited.  There is always a sense of excitement with butterflies in the stomach when one of my kids is in surgery receiving a cochlear implant.  I know that this surgery is about to change their lives forever.  They will be able to hear and in this case, my son's hearing will be restored as much as is possible.  The hearing that was taken from him from a still unknown source.  It is still weird to think that something went in and attacked my son's hearing and stole almost all of it away in his left ear.  We knew all of the best doctors.  We knew where to go to check things out.  We got all of the tests the professionals knew to give. And yet, still we don't know what took my son's hearing.  It still freaks me out a little to think his hearing was stolen and we don't know by what.

But now, he has an implant and that is going to help him hear again.  After the surgery was over, the surgeon came to talk to us and tell us how the surgery had gone before we saw our son.  The surgeon said that the surgery went really really well.  He also said if any surgery was going to retain any residual hearing, this would be the one.  We were praying for that.  Our audiologist will test in the next few months to see what hearing has been retained.

When we went into see our boy, he was still asleep after surgery.  We sat by his bedside so that we would be there when he woke up.  I just love these kids and want them to see me when they first come out of surgery.  They always look a little disoriented like they are trying to catch their bearings, which is totally to be expected.  Naturally, we took pictures, because we parents like to document these momentous occasions in our children's lives.

Nurse Chance

Chance was so cute helping out his brother.  He kept a good eye on his little bro, and when the nurse came in and suggested that his little bro try to eat something, Chance took the lead and wanted to help him with his first food after surgery.  Chance also was the one who jumped up and wanted to help his brother when he had to use the restroom the first time after surgery. Chance was a personal nurse on surgery day.

I think it was interesting for Chance to see the implant surgery from the other side.  He got to be in on the excitement and anticipation on the waiting side rather than the receiving side.  And Chance is SO excited that his brother got an implant.

Leaving the hospital after surgery being pushed out in a wheelchair by a nurse.

We left the hospital with a mummy wrap on the patient's head which is standard with an implant surgery.

We left for home later than we had anticipated.  The surgery got done later than we had originally thought and then we were waiting for our little son to come out of anesthetic and stay awake for a bit.  We started home in the dark and in rush hour traffic, but all was well.  Our son was peaceful with no indication of any pain whatsoever and it was kind of pretty watching the lights in the dark with a touch of snow.

We were very blessed as members of our church group had kept tabs on us during the day, praying for us and provided dinner for our family for the night of the surgery and the next night as well.  Homemade delicious meals were dropped off at our house so we didn't have to worry about cooking dinner for the other kids when we got home.  The meals were delicious and we enjoyed them immensely.

When we got home, our little son just continued to go in and out of sleep.  When we went to bed, we were concerned because there had been no pain medication given since surgery and we were afraid that he would wake up in a lot of pain.  So we woke him up and gave him some pain medication.

Our son never actually asked for pain medication after the surgery.

Not the next day, and not the next night.

We would ask him if he hurt and needed some medication and he said no.

We didn't want to push him into taking medication, but it did freak us his parents out a little.  We knew that the surgeon had literally drilled into his skull and to us, that meant there should be some pain involved. We of course, did not want to remind our young son that this had happened, but he did not seem phased by pain after the surgery.

He was a little trooper.

Twas the night before surgery

The short version of this post is that the surgery went really well and now we have a third implant in the family.  Well, we have all of the equipment for a third implant, the last one put in this week has not been activated yet, but all of the parts are there!

For an extended version of  how the implant process went, see below:

Our little son was a little nervous the night before surgery.  He is a very inquisitive boy and a deep thinker.  He asks lots of questions and is curious about how things work.  We had role played as a family what would happen during the surgery, and our little son smiled and played along.  

When we first started talking about implants,  and Chance was talking about how awesome they were, our little son shook his head no when asked if he thought an implant would be cool.  When we asked him why, he said because he didn't want them to cut into his head.  That is a valid concern for a kid.

Close up of the shaved sides of his head the night before surgery.

We had such little notice for the surgery, that we really didn't start talking in depth about it until 5 days before it actually happened.  We answered any questions about the surgery, showed pictures of what the implant would look like inside the cochlea and talked about the fabulous accessories that would be coming with the implant.   Chance was delighted about the surgery.  His brother was more contemplative and would answer, "I don't know," when asked how he felt about the surgery. This is my child that even when he was really little, it was hard to get out of him what happened when he  got  an owie.  He just doesn't like to talk about it.  Unless his siblings are the cause of his discomfort, then he lets me know without much of a problem. 

The night  before the surgery, we let our surgery-bound boy eat whatever he wanted for a bedtime snack.  Usually we give the kids an option of a cheesestick or banana, but on this night, we let our son have what he wanted, and given this grand choice, he chose cereal.  And he ate a piece of toast, and drank some water.  In the end, I think his eyes were bigger than his stomach and he ended up uncomfortably full.  

Then the nerves kicked in.

He said he felt sick, and had a REALLY hard time falling asleep.  He told me he felt like he was going to throw up and that he was,"too sick for surgery tomorrow."  

I told him that was OK, that we didn't have to worry about that yet and rubbed his back and told him stories.  He climbed in my bed and slept there all night next to me after finally falling asleep at around midnight. 

The following morning, we just picked him up and loaded him in the van so as to minimize his time to worry.  He would be changing into a hospital gown when we got there anyway, so we figured he could travel comfortably in his pajamas.  

The only thing was, we forgot his shoes.  In his nervous state the night before, he had worn them to bed and after he fell asleep we removed them and put them by the side of the bed.  Then, we forgot to take them with us to the hospital.

It was snowing and cold outside so we decided that one of us would just carry him into the hospital after driving up to the door.  About 10 minutes before we got the hospital, the water and milk our son had consumed the night before kicked in.  This is the child who frequently gives little warning when we travel that he has to use the restroom.  By the time he mentions to us that he needs to go, he needs to go right away.  So ten minutes away from the hospital, he tells that he needs to go the the restroom....really bad.

Getting ready for surgery with the nurse

We pulled up to the hospital entrance and Chance and I ran in with Chance carrying his brother while daddy parked the car.  Once inside the hospital, Chance's brother wanted to be set down and that was how he ended up walking down the hospital corridor in pajamas, with no shoes briskly headed to the restroom.

A surprising number of people noticed that my son had no shoes on as they would look at his feet and then look at me with a look that said they were trying to figure out if I was taking good enough care of my child.  Hey, out of the two kids with me, one was completely dressed including shoes.  The other child was in pajamas and barefoot.  I did good with one out of two which isn't bad:) And my theory is, you should never judge people in a hospital, you just never know what they are going through. 

Once back in the room, the nice nurses let our son take in a quick shower.  Since he had been so nervous the night before, we had not showered him then.  And in the morning, we didn't shower him because we figured just taking him from the bed to the car would be in his best interest.  Having done this surgery 3 times now,  we knew that the surgery site would need to stay dry for several days following the surgery so we squeezed in a little shower at the hospital.  It added to the adventure.  Especially since the water wasn't extremely warm, and the shower head was nearly completely clogged, allowing water to come out of only two holes - increasing the pressure in those two holes...

I could tell that my little son was feeling nervous so I joined him on
 the bed to watch some cartoons

The surgery before ours took a little longer than they thought it would, so we sat in the hospital room talking and watching cartoons.  The nervousness from the night before was mostly gone, though after the nurse left and said she would be back soon to take him back to surgery, I could tell my little son was starting to feel nervous again.  I climbed up into the bed with him and together we laughed through a cartoon until it was time for him to get on the gurney and head back to surgery.  He held my hand as we walked down the hall, and the nice hospital staff let him take his stuffed bunny, which was dressed appropriately in surgical gear bought for this very occasion back into surgery with him. 

Chance supporting his little bro.

We had one last stop before surgery and that was behind a curtain while we waited for the anesthesiologist and surgeon to come talk to us.  Our son reluctantly parted with his beloved watch and then he started to get  a little nervous again.   Our kids don't have ipads or anything like that which comes in handy in situations such as this because they are really excited if we let them play games on ours.  We started playing a game together on the ipad, and by the time the anesthesiologist came back to talk to our son,  he was well entrenched in a game.  We took the ipad from him right as they were wheeling him back to surgery so he didn't have much time to worry about where he was headed.

Chance came along for moral support and he has been so cute with his brother helping to make sure that he is taken care of and looked after.

Implant number 3, here we come!

Another implant in the family

It is the eve of another cochlear implant surgery for our family.  Tomorrow we will be heading to a hospital an hours drive away to have an implant added to the family.  Sure, Chance's brother will have the most intimate relationship with the implant out of all of us as it will belong to him, but I can not even write in words how excited Chance is that this surgery is taking place.

We have been waiting.  Waiting for a month to see if our insurance company would cover this implant surgery process.  The surgery has been scheduled for a few months now for if the loss continued to drop, but we only got an OK from the insurance company on December 23rd.  We were supposed to know by December 3rd, but due to some sort of end of year back log, we didn't know for sure if things would be covered until less than a week before the surgery.  We had the implant ordered...the brown one which was the best hair match, though I foresee many fantastic covers being utilized through the years as well.

When we did eventually hear from the insurance company, Chance's brother, who was sitting on the floor, just sat pondering what it all meant.  We had been unsure what to prep him for.  He could or could not be going in for surgery in less than a week, and we didn't know which way to prepare him for, so we had just been waiting.  At the news that the surgery would be covered by insurance, Chance jumped up out of his chair in the kitchen and shouted,"IT'S ANOTHER MIRACLE!"  Then he picked up his brother and swung him around saying, 'YOU ARE GETTING AN IMPLANT!"

It really is a a blessing that this implant was approved.  Our insurance company is one of the strictest ones when it comes to covering implants and we weren't sure if they would cover it.  We have been praying with family and friends that our little son would get what he needs, and he needs an implant.  That left ear of his, is the worst of the two ears and he is always turning his head so that his right ear is facing whoever is talking to him even when he has hearing aids in. Where he once used to be able to hear me when he crawled under my bed covers in the morning, he now can not hear me and I have to put my mouth right up to his ear for him to get anything I am saying on his better side,  And there is still no guarantee that he will hear me.

Chance is a little bit jealous since his brother will be getting the newest implant AND will be getting some pretty awesome accessories to go with it.  We went with another Cochlear brand implant and Chance thinks some of the accessories we chose are awesome.  Chance now has a new wish list of implant accessories that he would like for himself after looking the list over.

We have been preparing our young son for the past few days for what will happen tomorrow.  He has asked questions about how big the scar will be and if he will be able to hear right at first.  Luckily, we have Chance around who has been a living specimen for his brother to look at.  Chance has shown his brother his scars,  and we have stuck paper clips to Chance's magnets to show how great the magnets in Chance's head are.  We also walked through what will happen at the hospital tomorrow like we did with Chance.  The family did a little skit about what will happen tomorrow and we each took parts.  I was the narrator and the kids all took the parts they wanted to act out.  Chance was the surgeon. Our oldest son was the anesthesiologist, one sister was the admitting nurse, and his other sister was the nurse that took patients back to the operating room.  We looked at diagrams on the computer of the implant inside a cochlea,  and the big "bubble" of gauze that will be around the ear after surgery.  It is this bubble that prompts us to use button down p.j.s for these operations.

We have also shaved the sides of his head as the hospital will shave his left side, and having the hair start out at the same length on both sides helps both sides grow together after the surgery, avoiding awkward hair moments later.  We have done this before can you tell:)

Chance has asked to come to the hospital with us to support his little brother, so all 4 of us will head off tomorrow morning to be a part of the implant process.

We let Chance's brother choose a fun place to go as a family on Saturday before the surgery.  He chose a place with giant trampolines and foam pits.  He had a great time swinging out over big pits and dropping into the soft cubes of  blue foam.

We are hopping that any hearing that is left in his ear will be salvaged, and are told that there is about a 50% chance it will be saved.  We are praying that any hearing be left intact, that the surgery goes well and that our little son responds well to the anesthetic and recovers quickly.  I will be updating the blog with details of the process as we go along.

Chance told his brother tonight as he was heading off to bed, "Implants are so much better than hearing aids."


P.S. I realized that by the time this posted, the date would read December 29th instead of December 28th. The surgery is on December 29th.

A conversation between my two hearing impaired kids

Our family headed up into the mountains a few weeks ago to find and chop down our Christmas tree.

We took an ax, hot chocolate, some snacks, a sled, and warm clothes.  It turned out that the day was quite mild and a beautiful day to search out a Christmas tree.

As we set off on our journey, we were in the truck.  The truck is a bit of a tight fit for the family, but we figured that it might be the best way to haul a tree down the mountain. I heard a conversation transpiring between my two sons, one with hearing aids, and one with cochlear implants:

Chance had his legs spread out, taking up a bit more than his share of space in the backseat.  That made it so that his brother did not have enough room so he asked Chance to clap his legs together. As in clap them together so there was more room.

Chance thought he was talking about clapping the window shut, and said, "Would you rather have the window open now for 10 minutes or when we are up the canyon?"

Since the conversation wasn't making much sense to me, I thought I would make sure that my two hearing impaired children were actually understanding each other.

I asked Chance if he even knew what his brother was talking about.  Chance was sitting by an open window at the time,

Chance said, "He wants me to close the window."

I then told him that his brother had asked him to close his legs so that there was more space to sit in the backseat.

Chance laughed and said that he had no idea that was what his brother had said.

My roles are many.  Mother, wife, friend, student, Christmas tree finder and sometimes, an interpreter for my children with hearing loss.

Can you cheat in a hearing booth?

I took Chance's brother to another hearing appointment today.  In case any of you are keeping track, he has been in the sound booth 497,000 times.  OK, that may be an exaggeration, but he is in the sound booth A LOT.

Today, he made me laugh at the same time my heart was hurting for him as his hearing fell again.

His left ear has the most loss, and as we sat in the booth together, Chance's brother was not getting several of the sentences he was supposed to repeat back to the audiologist.  Many times, he would just look at me and shrug because he did not know what was being said with out his hearing aid on.

Then, he asked me this question," Can you hear everything they are saying?"

The fact is, I could hear every single word they were saying, but I didn't want to make my little son feel bad that he couldn't.  So I paused for a moment, trying to think of what to say, and then I just told him the truth.

"Yes, I can hear what they are saying."

With the adorable little grin that he gets sometimes, he asked me sweetly,' Can you tell Me what they are saying?"

He looked so cute sitting there in his chair asking me if I could tell him what was being said, however in an audiological booth during a hearing test, that would be cheating, so I had to say no.

You have to give the kid credit for trying to work around the problem of not being able to hear what is being said to him though.

We need another stash of batteries

Many moons ago, when Chance wore hearing aids, we had hearing aid batteries stashed in the glove compartment of the car, in my purse, at his preschool and at each set of grandparents house.  (We followed this same practice with his cochlear implants before he used rechargeable batteries)  Chance was really young so he was not a good source to tell us when his battery was dying so we just tried to be prepared everywhere we went.

We have apparently lost our edge. Today, in the middle of the afternoon, Chance's brother told us that his hearing aid batteries were dying.  Both of them, at the same time.  And five minutes later, both hearing aids turned off.  Chance's brother's hearing is such now that he cannot hear much without those hearing aids.   This was when we discovered that WE HAD NO HEARING AID BATTERIES ON HAND.  We were not prepared and our son begged us to go to the store and get some more batteries.  Quite the change from only a month ago huh, when he didn't even want to wear the aids at all.

Today is Sunday and we try not to shop on Sundays.  It is our day to go to church and spend as a family. But we could not have our son not hear for half a day, so I ran to the store and got him some batteries.

Today he  was begging for us to get some batteries; a month ago, he would have seen this as an opportunity to take the hearing aids off, but now, he realizes how much better he hears with them.

It is time to prepare ourselves again and stash hearing aid batteries in the car, in my purse and maybe at the grandparents houses.  There is something a little pathetic about a child with hearing loss having to beg for hearing aid batteries.

Crispy fall leaves just waiting to be walked through

This is a look at what is going on in our neck of the woods.  It is fall, and as we get ready for Thanksgiving, crisp leaves blanket the ground and the weather is turning colder.

I love the huge hay rolls that appear in the fall

It is also time for the cub scout derby! The derby is a highly anticipated event where cub scouts build their own cars out of a kit and then race them against each other.  Chance's brother had a marvelous time building his car with his dad.  Last year he won 3rd place, but this year he just had LOTS AND LOTS of fun racing the other boys.

The boy in the picture is not Chance's brother, just a cub scout ready to race.

The only problem we had with the derby had to do with hearing the time to turn in the cars for a weigh in.  Chance's brother was bound and determined that at church when they announced what time the cars had to be turned in, that they had said 2:00 in the afternoon.  I received an email telling us that the cars had to be in at 5:30, but my son had heard 2:00 and he could not be talked out of that time.

This is one of those interesting things that happens when you have deaf and hard of hearing children.  They sometimes don't hear things quite right, but they think that it is YOU who have heard it wrong.  It is quite comical sometimes.  We finally talked our son into believing us that the weigh in was at 5:30 but it took several days and a conversation about how at 2:00, both the boys and their dads would still be at school and work.

We have another hearing test today to see if Chance's brother has lost more hearing.  Each time we have had a test in the past several months, at least one ear has lost more hearing.  We are now looking at cochlear implants.

Wish us luck in the hearing booth!

Chance moves to Tonga and joins the United Nations

So, we went bowling again this week as a family.  This must be some kind of a record.  We had another birthday in the family and I would just like to say that, I BEAT CHANCE!

Chance participated in a re-creation of a United Nations Meeting this past week at a local university. High school kids from about 16 high schools in the area were bused in to re-create a United Nations Conference. Chance was the UNICEF (The United Nations Children's Fund), representative from the country of Tonga.   Chance and his fellow high school students had a debate on the resolutions that should be passed for children involved in and affected by armed conflict in the world.  The second debate was about children in poverty across the world.   Chance really enjoyed the experience and wants to participate again next year.

I am delighted that Chance got to participate in this program.  He is now a little more interested in taking debate classes as well.

All I can say is that if Chance is a representative from the nation of Tonga, I think I need to pay him a visit:)


Update:  Chance's brother has a big hearing test tomorrow.  By big, I mean it is his first one in 3 weeks, and each time we have gone in these past few months,  his hearing has fallen a little more. Tomorrow we will do at least a few hours of testing and see how things are progressing.  In the meantime, our boy has taken to Harry Potter and when he got a scrape across his forehead, he was delighted to see that it looked awfully similar to Harry's scare and is even in the right spot.  This made dressing up for the masquerade ball that his children's choir performed in, even more delightful for him.  You usually just can't plan scrapes like that.

After our marathon testing session, we will head over for an ice cream cone at the creamery up the street from the sound booth.  I think we may even get double scoops.  Sitting for several hours in a sound booth testing your hearing deserves a double scoop of ice cream.

How Chance celebrates Halloween

This is Chance planning and carving his Halloween pumpkin.  We have a pumpkin patch up the hill by our house and so the kids all got to pick their own pumpkins.  Naturally, everyone chose the biggest ones they could find.

Morph Suit + High Heels = Chance?

Chance has been enjoying this Halloween season.  He went to a Halloween party dressed in his morph suit, and then at some point during the party, he decided to wear the high heeled shoes of one of his friends.  He asked me how girls could wear high heels because they are really hard to walk in.  I hope those shoes are OK for his friend to wear again.... Chance's feet are not small and dainty by any stretch of the imagination.

At school and for trick or treating, Chance dressed up as Sanka from the movie Cool Runnings.  So did his brother.  Chance now says that he wants dreadlocks, but apparently he got voted "best hair" a few weeks ago at school with what he's already got so he may want to reconsider.

Chance went trick or treating with his cousin and texted me with the message that they had gathered 11 POUNDS OF CANDY!  I am going to have to bury some of it in the backyard so that Chance doesn't get sick.