The Sweet Sound of Progress!

So Colton is moving right along. We have turned him up quite a bit. We tested him in the booth at this last visit and it was pretty frustrating. He didn't seem to respond to anything at first and I started to worry that his implants weren't working at all. Our wonderful audiologist reminded me that Colton is 2 years old. The age that they refer to as "the black hole" because they just don't test well. They are more interested in playing or ignoring what is going on around them. We made some adjustments to one ear and came back the next week to work on ear number 2. This time he did better in the booth. He responded to some noises at 20DB (Decibels) That is in normal hearing range. I was so super excited.

Then to add some icing to the cake, he has started making more sounds. He has always kind of hummmmed a bit, but he actually opened his mouth and turned it into an AHH. It was amazing. And now he is starting to use the AHHH in his regular play. He also says MMMMM and GAGAGA. It is so fun to see him making progress so quickly.

He is almost turned up as high as we will go. We will just see how he acts as we tune him up. We don't want sound to be a negative thing. But he is starting to act like he wants his implants on and will sound check by making noises when we put them on him in the morning. He also will come over to us if one of the coils falls off his head and wait for us to fix it.

It is so exciting to see Colton doing so well. It is alot of work. We go to therapy 2 times a week, with more coming in our home weekly. I feel like we are always making the sounds as we go shopping, or do laundry or dishes. We are just trying to incorporate it in every part of our life. And for now, it is working. We are also continuing with ASL and he is making progress on that too. It seems that it has taken so long for us to see progress, so we are just going to savor it while we can!

Here is the link to Colton saying "AHH" for the first time if you are interested.

http://www.youtube.com/watch?v=I2KxyJnhcd4

1 month

I can't believe it has been just over a month since Colton was "turned on". It seems to have gone really fast, but very slow at the same time, if that makes any sense at all. Here is an update of the last month.

It has taken several weeks, but Colton no longer cries when we put the implants on. He now will hum when they are on. It is almost like he is sound checking. I think that he is getting to a point where he likes them on. He still does not respond to every sound. And he responds the best in very quiet environments. I can call his name and get him to turn to my voice, but it is only about 50% of the time.

Colton started private therapy on top of the other therapies that he has. We are continuing with sign language, so he has that as well as oral therapy. It is mostly just playing with toys and putting a sound to it. Like a car says BRRRR or a snake says SSSSS.We are also trying to help him understand that he can use his voice or signing to get what he wants. Colton is pretty laid back and doesn't demand too much. We want him to start to make a sound or sign when he wants something, like saying UhUhUh when he wants me to pick him up instead of just putting his arms up. It is a lot for us to work on and it seems to take forever, but it will come and then I'll wonder why I wanted him to know that he could demand things!

The biggest changes are that Colton is starting to use his voice more. He is making more sounds in play. He does a MMMM sound that I am hoping will soon turn into Mama. He also uses a AHHHH sound but he keeps his mouth closed. We want him to open his mouth and make it a bigger AHHH. He just started using a GAAA sound. He is also starting to notice some environmental sounds. He heard an airplane fly over our heads so I stopped and pointed it out to him. It will take some more time for him to understand what he is hearing, but we are trying ti point things out to him and give it a name. Like when the phone rings we point at it and make sure that he notices it.

We think of Colton as being a newborn in his hearing. We expect the same process that babies make in their first year with sound, just a little more accelerated. He won't respond to everything at first. It will take time. He will start to notice more and more and babble more and more. And around the 1 year mark we hope that he will be saying some words. It is hard for me to understand that he doesn't know what everything means. I knew this before his implants, but I still wanted it to be faster. It is a lot of work and we have to constantly remember to reinforce what he is learning. I go to bed at night and wonder if I am doing enough for him, then I remember that I am the mom of 4 boys and I am doing the best I can.

We got 2 colors of implants for Colton. There are 2 smaller batteries and 4 bigger ones. We have "skins" and ear hooks and ear molds. We are having fun trying out new things. Here are the normal tan ones with the smaller batteries:

And here are the snazzy leopard print ones with the darker brown coil and the bigger batteries.

Soon we will have the try the zebra print skins.

The Video

The video of Colton being "turned on" is at this link:
http://www.youtube.com/watch?v=Pz6O8BBa9us

Be warned that it is not all warm and fuzzy. He cries...a lot. But you can really see his reaction to being able to hear.

The Big Day, Getting "Turned On"

It was a very special day today. I don't want to forget anything about it. I am trying to get the video up and running, but it will take more tweaking. Give me some time. I had a lot of nervous energy this morning while we waited for 3:00 to arrive. I put on some music and cleaned my house. Even the bathrooms. When it was finally time to leave, I had to wake Colton up from his nap. I hate that. We went right back and we started in the high chair. The black cord you see in the picture is what is used to program the processor. He won't always have that cord hanging down.

The first tone he heard he reached up and grabbed at the implant. She did tones in different ranges. Some high, some low. By the 3rd tone, Colton was in tears. He was crying and crying. It was very dramatic!

This picture is between tones. You can see he is a little bit apprehensive because he just heard something that he has never heard before.
We decided to get Colton out of the highchair and see if he would be a little calmer with Mom. Here Grandpa is trying to help calm him down.
We took a break between ears to give Colton a chance to adjust to the first ear. He kept it on pretty well while we walked around and soon wasn't crying too much. We put the other side on and his responses were still big, but not so teary. By the end, she was able to have him up where she wanted him and he wasn't quite so sensitive to the noise.
Over the next few days I will turn him up every day. We want to introduce the sound very slowly. Next Thursday we will go back and she will turn him up even more. Colton isn't responding to every little sound yet, but he is definitely hearing more that he ever did with hearing aids.


Here are our cochlear implant cases. One for each ear, and yes, they are full of stuff.
Extra ear hooks, mesh covers for the microphones, power cables, batteries, special screw drivers, drying kits, extra cables, carrying cases. This is definitely an investment because when we run out of anything, we have to order more...for the rest of his life!

I will keep working on getting some video up. It wasn't all warm and fuzzy like you see on YouTube. It was stressful, and a little sad. I hate seeing my child scream and cry like he is in pain. I know that he will adjust, that it will get better, we just need to be patient. Colton is one amazing little boy. I can't imagine what it would be like to go from absolute silence to noise in an instant. Because it was in an instant. As soon as the coil touched his head he would jump and scream. But even being stressful and a little sad, it is amazing. And the last video we took was Colton laughing and smiling while he pushed a ball down the hall. And I saw him when he realized that he could hit the ball and it made a noise. That is what I am looking forward to...watching him see the world in a different way. A world with sound.

Yard Sale

To end the fundraising efforts, our wonderful friends and neighbors put on a yard sale. Lots of people donated stuff and many people sacrificed time, space, yards, and sleep to make this happen for us. Even though this isn't the first large fundraiser done on our behalf, it is as special and humbling as the others. We are so grateful to everyone who has helped us. Those who have put the events together. Those who have stressed out and taken time away from their families. Those who have stepped outside of their comfort zones. And those who have donated. Thank you so much. You will never know what kind of impact you have had on me and my family. It goes so much deeper than just the money. Thank you!

Our first outing

School starts next week and Colton is doing so great so we decided to take an outing to the zoo today. Colton did just fine. Overall he is fine. He is bleeding out of his ears a little bit every night as he lays on the side of his head. It is normal because he has tubes in his ears, so the blood has an outlet. It will eventually just go away to more he heals. He isn't in any pain anymore. The only time we see some discomfort is when he hits his head really hard. I am so impressed with Colton and how well he is doing. Just a few short weeks and we will take the next step.

Colton loved the carousel. I love these pics.

5 Days Later

It has been 5 days since Coltons surgery. Here is an update. Colton is still amazing. For the most part he is acting normal. He is still more careful with his head than usual and we know that he is having a little bit of pain, but IB Profin doses are keeping it under control. We only give it as needed now, which is about every 6-8 hours. I got my first full nights sleep last night and I am hoping for a repeat performance. He is a little bit clingy to me, but as long as I am nearby, will be down and play. We have a few more days before we can get the incisions wet, so we had another sponge bath in the sink tonight. There has been no bleeding from the ears the last 2 days and he had is last dose of his antibiotic tonight. Here is what he looks like tonight.



The swelling has gone down and now we can see in implant inside his head. It sticks out quite a bit actually. It doesn't seem to bug him much unless he hits his head, and I am sure it will only get less tender. As he grows up, his skin will get thicker and eventually we won't be able to see the implant, but for now, it is there.

Here is our plan. The surgery put in the internal pieces of the implant. This is what it looks like. The circle part in the magnet that will hold the piece on the back of his head. The square is the chip and the thin string at the bottom is what they insert into the cochlea.Right now Colton can NOT hear. He is completely deaf. The insertion of the implant destroys any hair cells inside his cochlea that he had. For the next 3 weeks while he heals he will not be able to hear. It is only when we add the processor. This is the "Brain" of the implant. It has the microphone on it where the sound will come in. The ear piece will hang over his ear and the circle part will magnetize to the back of his head.
Colton is scheduled to "be turned on" on Sept 1. Until then, we just heal. Even after he is turned on, it will take a lot of therapy for him to start to make sense of what he is hearing. It will be like he is a newborn in terms of his hearing. It is a long process, which is one reason while we feel so strongly about continuing sign language. But we are excited to finally be on this road.

Kids are Amazing

I don't have any pictures to post today. Colton is up and moving around like normal and he is hard to catch. The older brothers came home last night and we waited up for them. They all missed each other and it was fun to see Colton reach for each of them and give them loves.

Here is our update of the last 24 hours. Colton is doing great. We never put the bandages back on. He has enjoyed having a head free of stuff. He seems to itch around the incision a little bit and I have had to catch him from touching it, but for the most part, he leaves it alone. We spent the rest of Sunday relaxing. Colton played and napped. Phil and I relaxed and napped. Phil left around 4 to get the boys from Grandmas while I stayed with Colton. He ate dinner like normal. He played like normal. He even went to bed like normal. I didn't even rock him. Just put him in bed and he went to sleep. He only woke up 1 time last night. His bed was wet and it seemed that he had some blood and fluid that came out of his ears. We changed the sheets, gave him some IB Profin and put him back in bed. He slept the rest of the night and woke up happy this morning. No more heavy pain meds unless he seems uncomfortable, which he doesn't. The only thing that I have noticed is that he still isn't laying on the sides of his head much. He is favoring them a little bit, but that is it. He has eaten like normal today. Played with his brothers like normal and now he is taking a good nap for me.

We have spent a lot of time in the children's hospital with our son. I have talked to many doctors and nurses about why they choose to work with kids instead of adults and they all say the same thing. Kids are fighters. They are amazing. They hurt, but don't complain that much. They make it through more often. And the ones that don't, fight til the end. Colton is just like that. What an amazing kid I have. Actually, I have 4 amazing kids. They make it through the hard stuff so much better than I do. They see the things that matter most when it is hard. And they don't doubt and worry constantly like I do. What amazing kids I have. And Colton is doing great, and is going to be fine. And one day, I will be able to tell him about this whole experience. About all the miracles that we have seen. And about how amazing he is.

The Last 24 hours Update

After Coltons nap on Saturday he ate his first real meal. He ate his whole bowl of oatmeal and peaches. I didn't expect him to eat so much, but he finished it off and had some Graham crackers too. His appetite is finally returning. He is still on both IB Profin and Loritab, but we are spreading his doses out to 5 hours today. We just want him to be comfortable.
After lunch we gave him a quick bath in the sink. His incisions can't get wet for 7 days, so we kept the princess Leah cups to protect them. He did not like his bath. He cried the whole time, so we made it quick. He had a lot of hospital gunk left on him so it was nice to wash it all off. Now it is time to change the bandages and take a look for the first time.
He has some cotton balls in his ears. Because of the tubes in his ears, he will bleed out of them for a few days. It gives the blood somewhere to go. There wasn't a lot of blood.
The old implants used to have huge incisions. Now they are so thin, there is just one. Right behind the ear. Then they can slide it in. It is pretty amazing. They had to shave a little of his hair, but not much. There is some bruising and swelling, but it looks pretty good we think.

We know that there will still be some blood today, so we don't want him completely without bandaging. So we down graded to his hat. We put some more cotton in his ears and some gauze over them. The hat will hold it in place. It will also provide some padding so if he lays on his side, hopefully it won't hurt too much.
Colton seems to like his new look and quickly gets down to play.

We have some really great friends and a couple of them brought by some things for Colton. He loves his new ball. He especially loves to throw it down the stairs. I like his expression in this picture. He thinks he's pretty cool.
He also loves his balloons. We saw some pretty great smiles. Thank you so much for the gifts.

Colton ate some more solid food for dinner. Some crackers with peanut butter. He played the rest of the evening. It took some major rocking time to get him to settle down, but he was in bed by 9:30. His night wasn't great, but not horrible either. He woke up at 2:30 and got some IB Profin. I held him for about an hour and finally put him back down. He was up again at 5 and his cry was one of pain. So we gave him some Loritab and he was back in bed at 6. He was up for the morning a little after 7 and seems happy. We decided to give him some breathing room and took off the hat and bandages and he is playing now. Just a few moments ago he has once again emptied my cup drawer and they are all over the kitchen floor. We are going to take it easy again today. Try to be on his normal schedule, which means a nap after lunch. The boys come home tonight so we will see how life will be tomorrow.

The Surgery!

The day has finally come. It seems as if everything we have been doing this summer has been leading up to this surgery. The afterwards in unknown territory, but is full of hope. We are so happy with how the surgery went and how everything turned out. We know that we have done something for Colton that will help him in his future and give him choices and options in the future. We love him so very much. Here is a little recap of our day and an update of how Colton is doing today.

We had to be at the hospital at 6 am. We got Colton up and put him in the car. When we got to the hospital it was very busy. There were 9 other kids there before Colton. So we had some waiting time. Colton stuck close to us for the first little bit. He is always more nervous with lots of people around. Then he branched out and played. They finally called us back about 7. We changed him, weighed him and they did he vitals.

When they took us to the second waiting room, it was 7:30 and we didn't have to wait at all. The doctor was there ready for us. They gave us his new bear friend who we have named COCO because it is the Cochlear bear and also has implants for Colton to put in it. He immediately put the implant in his mouth. (don't worry, it isn't real!) The doctor said "Hey, those don't go in your mouth." We said, "that's where he puts his hearing aids too."

We walked down to the doors and handed him off to the anesthesiologist. Here he is looking at the lights in the hall. Then we headed off the waiting room to wait. The surgery took just under 3 hours which was amazing. The surgeon said that it couldn't have gone better and he was able to do full insertion. Sometimes they can't fully insert the electrodes into the cochlea. So we were very happy it went so well.
We had to wait about another hour before they let us see him. They only let one parent back first so of course, it was me. I had the first looks at him. He was crying when I went back to him and the nurse was holding him. He saw me and reached for me and I took him and sat down. He calmed down mostly, but was still obviously disoriented and groggy. It took him a good 20 minutes to settle back into a semi-sleep state. They told me then that we would be staying the night and were moving us as soon as they had a bed ready. Then dad could back and see him too.



They settled us into a observation room. He was not admitted into the hospital. It is called a 24 hour watch. It is billed differently and makes it easier to leave. We held him for a while and just hung out. We decided to go for a walk and put him in a wagon. We pulled him around the whole hospital. We started with the 4th floor and were able to visit one of our old nurses from the NICU. She came out and saw him. Then we continued walking the halls, floor by floor. When we got back, he took more pain meds and feel asleep. We were able to relax a bit more when we got a surprise.
The doctors had been monitoring him all day and felt that he didn't need to stay. He was holding up his oxygen and handling all his pain medication fine. So about 5:00 we headed home. This is right before we left the hospital.
He did fine in the car, but didn't fall asleep. When we got home he was obviously in some pain, so we gave him more meds and he fell asleep on me. He slept for about 2 hours.

Colton did throw up 2 times. We started feeding him a little bit. Not much of an appetite, but he took it. I rocked him and rocked him and finally was able to lay him in his bed just after midnight. I went to sleep and woke up to check on him often. He started crying about 3:30 am and Phil took him for the rest of the night. They both slept for some of it, but mostly he just sat with Phil. At 7:00 I took a turn. He wanted to get down, so I let him and he decided to play and walk around. He picked up blankets and toys. He crawled up and down the stairs. He would come back and take a bite of food, then walk away. His balance was good. He even smiled.

He settled down for a nap and has now been in bed for just over 2 hours. When he wakes up we will give him a little bath, from the neck down and take off the "princess Leah" head gear. Then if we can stomach it, we will take a look at the incision. I can tell that he isn't back to normal and we will keep him drugged up for the rest of the day, but I have been so worried about how he would be after the surgery. It is so hard to decide to put your child through such a major surgery. I love to see him up and walking around. And I love that he is still making noises and banging spoons on metal chairs to see if he can hear it. And I love having the hope, that he will soon be able to hear it. Now Colton gets to heal. And on Sept.1, he is scheduled to be turned on. And we will start the next part of this journey.