Keep Us in Your Prayers

The last several months Noah has had appointments for his cochlear implant. He has had many  test done and an MRI. His audiologist and ENT doctor has concluded that over half of his implant is not working.

Tomorrow we have to be at the Cleveland Clinic at 8:30a  and his surgery will be at 10am to replace his implant. We're hoping this will allow him to have better quality of hearing.

Please keep this little guy and us in your prayers tomorrow. Our whole family's anxiety is off the charts after almost losing him in April.

Surgery On the Horizon

 

Yesterday Noah had an appointment with his ENT. Only half of Noah's electrodes in his cochlear implant are working. That might explain why Noah has been taking his "ear" off. It must not be sounding right to him. Maybe it hurts? Who knows...` The Cochlear Implant team feel that it has gone bad because of Noah banging his head on his headrest. Something that he does when he gets stressed out or anxious. Noah has been on anxiety medicine since May and it has done wonders for him. Boris has also played a big part in keeping Noah calm during his day and when he goes to his many appointments. With that being said it is time to replace his implant. The surgery will take place as soon as it can be scheduled. 

Cleveland Clinic/Willoughby

Our appointment with Noah's audiologist on Monday went really well.

I was telling Katie that Noah won't wear his ear to the food pantry on Wednesdays. She then added a program that scans the area Noah is in and blocks out the background noise. On Wednesday I was getting Noah ready to volunteer at the pantry. After I was put his ear on I reminded him that Katie had added the program and to give it a chance before he decides to take his ear off. I'm pleased and amazed that he didn't try to take it off. In fact he wore it all morning. Noah even interacted with everyone and even had a few smiles.

Our appointment at the audiologist consist of hooking Noah's implant up to a computer and checking to see how his brain is processing the sound. They make changes with the information they receive to make the implant work better for Noah.

A Long Day at the Clevelnd Clinic

It was a long day at the Cleveland Clinic. We left the house when the sun was rising and got home when the sun was setting. It was beautiful day for a drive.

Appointment #1: ENT to see if he still had fluid in his ear. Because of his implant he is acceptable to meningitis with the fluid in his ear. Unfortunately the fluid was still there, in fact it was in both ears. He is in having surgery on January 26th to have tubes put in his ears. Happy birthday, Noah you get to have surgery 2 days before your birthday. Lucky you...NOT

Appointment #2:  Gastroenterologist  Dr. Kaplan We had a good talk about Noah's height, weight and how I feed Noah. The Cleveland Clinic has come a long way from when I first started a blenderized diet for Noah. Dr. Kaplan used to really struggle with the idea I wasn't feeding Noah formula through his tube.She now supports me and the nutritionist is on board and willing to support me. Speaking of Noah's height and weight, He is 72lbs 15.6oz and he is 4ft. 9in tall. He has only gained about a 1/2lb, and grew an inch in the last 6 months. I think it's because of the sinus infections he has dealt with in the last 6 months. I think I figured out what has been causing the sinus infections. I changed what protein powder I was using to one that insurance would pay for and he has been struggling with sinus infections for the last 6 months. Gotta love those light bulbs moments. I'm just sorry I didn't figure it out sooner.

Appointment #3: Pulmonary with Dr. Royce He was very pleased with how well Noah's was doing and advised us to keep doing what we are doing.

Appointment #4-5 Dr Royce ordered a chest x-ray for future reference of bronchiectasis. It is the chronic collapse of his lungs in the lower left lobe from all the pneumonias in his lifetime. Good news is it hasn't getting any worse and is quite stable. For the first time a x-ray shows that Noah has a curvature of the thoracic spine with an apex angulation. I have seen this myself when I'm doing ABR and have discussed with my ABR trainer Mariana. She said in all reality it has always been there but has masked by Noah's other structural problems. Good news that with it finally showing itself means we are well on our way to fixing it.

Dr. Kaplan ordered for some blood to be drawn to check his nutrition levels in his body. Good news is Noah's protein levels are finally in the standard range. I'm going to make an appointment with his nutritionist here in Mansfield so we can go over the results and discuss what I need to do to make his nutrtion the best it can be.

The day ended up being very long and found out some good and bad things that are going on with Noah. I always say things could be a lot worse and we are very blessed. 

Spring Zoo Trip 2015

Everyone was on spring break so we decided to go to the zoo.

It started out pretty cold but by lunch time it was feeling much better.

This was Noah's first trip to the zoo with his new ear. He was bit under the weather but he still enjoyed listening to all the new sounds.

Our little tour guide enjoyed a ride on the train.

Looking forward to the summer and more trips to the zoo.

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.

A Night With the Columbus Bluejackets

Friday night we went to see the Columbus Bluejackets. We got tickets from A Kid Again, its an organization that plans fun activities for Wish families. Noah's first stop was getting his picture with one of the pretty ladies that cleans the ice during breaks.

Friday night was also Stamp Out Cancer night. They honored some children that are fighting cancer.

It was a great game, the Bluejackets won 3-2.

Noah, Emily and I had a fun time. When the game first started, Noah let us know that it was too loud. Thank goodness we were able to turn his implant down. He was then able to enjoy his first hockey game.

Our seats weren't handicap access able, unless we wanted to sit behind all the other seats in folding chairs. I carried Noah down to our seats and he sat really well between us.

When we arrived at the game, we were given these signs to fill out. United We Fight Cancer For: Daddy, Grandma and Grandpa Sheaffer and our cousin Tiki.

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.