Cleveland Clinic Day

When we go to the Cleveland Clinic, I usually schedule all his specialist on the same day. It makes for a long day by it's worth it. With a 2hr drive it's nice to not have to come all the time. 

Noah first appointment was to get his teeth clean. He gets a dose of Valium to help calm him a bit. It helps but it still takes Scott and I to hold down so he can get his teeth cleaned. He is small and mighty. It may not look like it but he is very strong. Good news he didn't have any cavities.

He then had an appointment with his audiologist. It didn't go very well because he was still laid  back because of the Valium and his wrestling match he just had. They need to him to be able to respond to sound and voices to see how well his implant is working. We need to make sure to schedule the audiologist appointment first next time. I did mention while at this appointment that Noah's ear was bleeding a few days before the appointment, so they sent us over to see the ENT to then find out that he had an ear infection. He has been on antibiotic drops and goes back on Feb. 27th to get it rechecked.

Noah's next appointment was with his gastroenterologist. This the appt. that I always fret over because it's the one that they always are on me about his size, weight and what I feed him. Over the last couple of years it had gotten better and they are trusting me more. I have fought and worked so hard for every pound Noah has gained. At times it has felt like all I do is make food and feed Noah. But, it sure has paid off. It the last 6 months Noah has gained over 8 lbs. Yes you read that right.....Noah now weighs 78lbs 11oz. and 4ft. 9in tall. The best of that is they feel Noah is just the right size and looks really healthy. The hard part is now that want him to maintain. How do I do that? For the last 19 years of have work so hard for him to gain weight. Getting him to maintain weight is a whole new concept for me.

The best part of our day was eating lunch with our good friend Pastor Steve. It was good to talk and catch up. After lunch we had to see Noah's nutritionist and discuss how many calories he should have now. We were told 2000. I sure hope I can do what I need to do and keep Noah from losing weight.

We then had to get Noah's blood drawn for some test to make sure his body is getting the nutrition he needs and some other things. We did find out that his liver enzymes were off and have to have it rechecked. I sure hope it's because of his ear infection and not something else.

 

Noah's last appointment was with his pulmonologist.  Something that was said while looking at Noah's lungs from PICU stay last fall was that the doctor said he could see the affects of second hand smoke. Really?  We go out of our way to keep Noah away from second hand smoke. So, we aren't real sure how to take that.... I guess we will continue to keep him away from smoke the best we can. He really  isn't around smokers that much.  Besides putting him a bubble I don't know what more we can do.

It's Beginning to Look A lot Like Christmas

It's beginning to look a lot like Christmas.

Noah helped put the lights on the tree. I love all his facial expressions.He has seemed to really open up with his new ear. He seems a lot more engaged with his world. 

Noah went to a party at the Roadhouse with his class. He seemed a bit overwhelmed with all the noise.

After this picture was taken I had to untangle his fingers from Santa's beard. Sorry Santa.....

 

These 3 boys were so sweet. They came over and talked to Noah and treated him like a good friend. They were so interested in his cochlear implant. This picture doesn't show it but it was the only time Noah smiled while he was there. He really enjoyed interacting with his new friends.

Halloween 2014

Noah had a great week. He went to the parade and had fun hearing all the great sounds.

He went to the Youth Group Halloween Party and Emily helped him carve a pumpkin

Noah went as a Minion.. He had a great time listening to the band, but at one point Emily had to turn his implant down because it was too loud. I'm so glad he is able to enjoy the hearing world.

He had fun being Noah from Noah's Ark for our church's Trunk or Treat.

Youth Group Goes to the Pumpkin Patch

Emily is a youth group adviser at church, she was telling a couple of boys in Noah's class about the youth group going to a pumpkin patch  on Sunday and invited them to come along. Noah started crying and she couldn't figure out why. Emily then asked him if he wanted to go to the pumpkin patch and he blinked for yes. Isn't that awesome he heard Emily invite someone else and he didn't want to be left out.

Noah had a great time when he went to the pumpkin patch. He was lifted up into the wagon so he could enjoy a hayride with everyone else.

It was a bumpy ride but he enjoyed hearing new sounds around him.

New Things to Hear

Noah went swimming with his class today. He has a special case that we can put his processor in and a special coil to wear so he can still hear when he is swimming. He seemed to really enjoy the new sounds he was hearing while swimming with his friends.

The last couple of weeks has been so amazing watching Noah experience  his world through sound. When I look at the last picture I see a boy turning his head just a bit to take in the sound and try to figure out what he is hearing. He not only got to feel the warmth of a bonfire on his face but he also got to hear what it sounds like too.

Cochlear Implant Activation

On Tuesday. Sept 23rd. we had an appointment at the Cleveland Clinic to have Noah's cochlear implant activated. It was a much anticipated day. We went into hoping to see an awesome response from Noah, indicating he could hear. They put the processor and coil on and hooked it up to the computer to program it.  During this process and beyond I replaced the processor and coil it seemed every 2 seconds. It was very frustrating. I was almost in tears thinking that we put Noah through implant surgery and took what little he could hear away from for nothing. They finally got it programmed  and turned him on. We did get a bit of a response but nothing you could catch on video because we were still continuing to replace everything on his head. So there was a lot of in out of hearing for him.Not an ideal situation to get a good response from Noah. It was  very disappointing  to say the least. 

On the way home we stopped at Walmart to find anything that might help keep it on. I picked up a hair band and two sided tape. The hair band spun around and didn't hold the coil in place. The two sided tape worked ok but not great. Then of all things I used some Batman duct tape. It held the coil in place even while Noah rolled on the floor. Shortly after we got home, Emily got home from work and had bought him a new book. To see the joy on his face as she read to him was priceless. Then we tried the video again and we finally got the response we were hoping for. We have since gotten some toupee tape and it works wonders. No more duct tape needed.

On Wednesday, Sept. 24th we went back to the Cleveland Clinic to have his processor tweeked a bit. When we got there they hooked up his processor to the computer so they could check it out internally. This where they check out the wires and nerves they are connected to. During this process Noah started to make his upset sound over and over. We then realized that he was getting upset because during this process they had shut off his hearing. Did you read that right? He was mad because he couldn't hear!!!! How awesome is that? When they were done programming his processor, they turned Noah's hearing back on and he jumped and squeezed my finger. It brought tears to my eyes. My little man can hear!!!!!

Noah's Cochlear Implant Surgery

We got to the Cleveland Clinic at 6:30 on Tuesday, August 19th.

He was trying so hard to be brave. He only got a little bit junky sounding.

They finally called us back around 8:30. Makes you really wonder why they ask you to be there so gosh darn early.....

They gave him a dose of  Versed to help  him relax.

He had one last ditch effort and tried to lunge himself off the bed and then was out cold.

While sitting in the waiting room for 5 hours, I found these pictures on Facebook. It sure was nice seeing all the support. Thank you so much, it sure made the time go a bit easier knowing we had so many praying for us and Noah.

After 4 hours of waiting the surgeon told us everything went well. They tested the implant and initial results were encouraging.We waited another hour before we were able to see him. It was so good to see him awake when the time came.

They kept  him overnight even though this is normally an outpatient procedure. They were saving us a trip back up the next day to check his surgical site.

They assured us the turban that they put on Noah's head to protect the implant would stay on. Obviously they don't know Noah......

We tried all kinds of ways to see if it would stay. Even putting the strap that across his forehead under his chin. It still didn't work. Mister Houdini himself had no problem getting it off.

It wasn't happy until we finally gave up and let him be without it. After he finally got it off for the last time he rested but he never really slept. The doctor came in at 7am the next morning and wasn't very happy that his bandage was already off. I assured him that he hadn't bumped his head on anything.

By 9am we were out of there. We got him in the van and probably 5 miles done the road and his protective bandage was off again . The little booger.

He was so glad to finally get home and so were we.

 Where the bandage is behind his ear is where they opened him up to do the implant. The dark spot above is where they ground a "cup" in his skull so the processor would eventually have a place to rest. There's a magnet inside his skull there for the processor to stick to.
The bottom picture is his incision site. Everything is healing pretty nicely. We go back to the Clinic on Monday for his preop appt. and then  on Sept 23rd his implant will be activated. I can't wait..... It's going to be a whole new world  and I can't wait to share it with him.

Noah's Preop Appointment

Noah's preop appointment went really well. In May when Dr. Anne looked in Noah's ear she noticed his eardrum had appeared to be collapsed because of all the scar tissue. Because of this he would have to have his tragus (cartilage on the outside of his ear, shown in the picture by the arrow.) removed and placed under his eardrum so it wouldn't rest on the electrodes of his implant.    She looked in his ear today and said it looked beautiful and most likely this part of the procedure wouldn't be necessary anymore. How awesome is that?

Noah's surgery will be on August 19th. Only 2 weeks away. He won't get his processor until Sept. 23rd. I want to be able to take Noah to a Indian's game on Sept. 28th. He went 2 years ago before he had glasses and hearing aides. Last year he went and he had his glasses and hearing aides. This year I want to take him knowing he can see and hear. I'm hoping to make it a reality.

A Busy Week

went

On Monday I took Noah to his preop appt. with Noah's pediatrician Dr. Moneme. It really well. He is 64.8lbs and Dr. Moneme said Noah's lungs have never sounded better. And that's with no breathing treatments or vest treatments for 6 weeks. :) Go Noah!!!!

These other 2 pictures is Noah having fun while waiting on the doctor to come him. In case you are wondering..... yes Noah is happy in this picture.

Monday evening Noah had a 4-H meeting. His club is rapping things before the fair the week of Aug 3rd. Noah got to hold the flags for the pledge.

On Tuesday Noah had to receive a meningitis and a pneumonia shot for his upcoming cochlear implant surgery.    

On Wednesday he had fun greeting and passing out bread to the clients at a our local food pantry.

On Thursday Noah helped Maddie and Issiah decorate a flower pot for 4-H.

 

On Saturday Noah helped his 4-H club sell baked goods at the Farmers Market to make money for the fair.

On Saturday we took Noah shopping and he wanted to carry his own bag. When I stopped to take a picture he started to swing it around and twirl it around his wrist. Check out that grip....

This next week is starting out to be just as busy. Millers is coming to the house Monday morning for a much needed hover haul on Noah's wheelchair. We are also hoping to hear something back from insurance on Tuesday about his upcoming surgery. We've done everything we need to do to get ready for surgery and now it's insurances turn. Please pray for a answer this week and the answer to be surgery approved.