Redemption must look something like this ...

 

Everynight, Wayne puts Seth to bed and they kneel beside Seth's bed to pray.

 

Tonight Wayne went to the store for bedtime.  I took Seth into his room and his sheets were all askew at the far end of his bed.  I straightened the sheets and blankets.  Then I turned around to see Seth in the kneeling position.

 

With no prompting from me, this boy who could not hold a spoon 20 months ago, was kneeling to pray.  He was kneeling to pray ... you see he is teachable, he can learn, and he is learning every single day  ...

 

I am pretty sure I just experienced part of his redemption.  It is almost too much for words.

 

 

 

 

 

 

Oh and he walked up the steps while alternating feet tonight!  While wearing these big honkin' braces and my slippers.

 

DIY Cochlear Implant Shirt - Take Two

A few days ago, I wrote this blog.  DIY Cochlear Impant Speech Processor Shirt

I made a few changes after Seth wore the other shirt for a few days.

I sewed up ten of these bad-boys, so I hope my changes are sufficient.

I moved the pocket under the arm.  I think this placement is better for when he is sitting.

I also made these without the Velcro.  I am now confident that the pocket is deep enough.

I also bought shirts that are a big snug.  These are a size 2/4 toddler and he typically wears a size 5/6 shirt.

I think this is my final design, for now ... lol

He will wear this as an undershirt, but for photos, I put in on top of his shirt.

Mmmmmmmm

DIY Cochlear Implant Speech Processer Shirt

I made a few changes .... Update here


I wanted something to encase Seth's speech processor.    We have been clipping the processor to the back of his shirt.  The processor weighs down his shirts and looks pretty awful and I am afraid we will lose it.   If you know Seth, you know he moves A LOT! I was worried about the clip coming off his shirt and us losing the processor.  We ordered a few options from Advanced Bionics; armband, body harness, lanyard ... but they all required the clip to be used.  I am not convinced that the clip can withstand Seth's movements.

I've seen a few shirts online that would meet our needs ... all underwear style shirts that cost 30ish dollars.  A five pack of a-line undershirts are only about 10 dollars ... I am much too frugal for that!!!!

I made one for free ... I had everything on hand.  I used blue thread for this, normally I would use white thread on a white undershirt ;)  I was prototyping and made this in about 10 minutes, with 9 children ... some running amuck and some "helping"  with things like spilling all my pins on the floor.

I took the shirt, folded it from the hem to the armpit, sewed Velcro on for a closure, created the pocket for the processor and closed the hem.  It is not fancy by.any.means ... but it is practical and cheap.

I am going to pick up a five pack of undershirts at WalMart and make a few more.

Before

With the hem folded up to the armpit of the shirt, I used a red marker to mark dots to line up the Velcro for pinning.  Here the two pieces of Velcro are pinned.  I used a 2" Velcro that I cut at a 1" height.

I sewed the Velcro to the bottom hem first.

Then sewed the Velcro onto the body of the shirt.

I created the pocket using a zigzag stitch.  I stitched over it three times.  If I had a serger, I could have done it in one pass, but my sewing machine is a very basic singer model that is over 20 years old, so it does done have any fancy tricks.

I sewed the hem onto the boy of the shirt, leaving the pocket open.

Inserting the processor.

Processor inserted with coil attached.

Wearing the designer duds!  Not bad for free and ten minutes of distracted time.  ... It took me longer to write this blog than it did to make the shirt.

If you are more clever than I, you will see my mistake ... ;)

I did not realize it until I flipped the shirt right-side out ... so I learn ... :)

I believe the pocket is deep enough that the Velcro may be unnecessary.  I am a little paranoid that we will lose the processor, so I will probably make the rest with Velcro.

Mapping and Hearing

Seth had his second mapping yesterday.  He was WILD!

He has been a little off  ... he has been putting everything in his mouth and hitting himeself again ... I think it is a reaction to not knowing what to do with all the sound.  He seems to vascilate between super happy to confused to mad. I can only imagine what he is thinking.

but .. but ... but ...

He is hearing! He is responding! He is seemingly happy about it when we are focused on hearing activities!

 

He pulled his hearing aids out A LOT .. A LOT, A LOT   ... he is not really messing with his coil or processor.  He did pull it off twice with one therapist, but he tends to act up for her a lot and of all his therapists, she has the most trouble handling him and making him listen. 

Second mapping session

Faith is playing the recorder with him - see the mouth thing?

Hosanna!  Seth is really enjoying the music

And he signed more -

without a hand prompt

 without anyone modeling

without him using my hands to sign

... HUGE ... HUGE ... HUGE !!!!!!!!!!

<<<THIS VIDEO IS AWESOME >>>

so much happening in this short clip

Communication

Expressing Emmotion

Cognition

Hearing

Activation!!!!!!!

What a day!!!!!  It started out with an appointment for Gloria at TCH.  While we were at TCH, we met TWO other families and their children ... with cochlear implants.  The Lord knew I was a bundle of nerves and He put those folks in my path.  Isn't it just amazing how He cares for us?

Seth's incision site at two weeks post op.  Doesn't it look phenomal?

Here, Seth's awesome audiologist is prepping his coil.   ... He doesn't have a clue about what is going to happen :)

And what you all have been dying to see ...

Hearing voices - mine and his audiologist's

He was HAPPY to hear!!!! 

Praise God, Praise God, Praise God!!!!!

I was excited, but also nervous and a bit fearful that he would totally flip out.  He didn't!  He continues to amaze me.

Tonight we took him through the house introducing him to "house sounds."

Water

Singing Toys

Piano

The CD Player

In the morning, I am going to work with him listening to the doorbell and knocking on the door.

Here the coil is attached and his hair is pushed out of the way.  When his hair is over, you can barely see it.  So far, he has not pulled the coil off.  It has fallen off many times due to his rocking back and forth and rolling his head.  It has two magnets in the coil, I am not sure if a third can be added or if it would make the connection too tight. 

We have another mapping session scheduled for tomorrow.  I will ask about another magnet. 

 

I have other videos, but they have been difficult to upload.  I'll try again tomorrow.

Cochlear Implant Surgery - GRAPHIC picture WARNING

Hey friends --- this post contains graphic inner ear pictures .... if that kind of stuff wigs you out, you better skip this blog post :)

Seth went for surgery on 7/9

The surgery was a success and recovery has been awesome.

He will be activated in another week.  We will have a several hour appointment where they turn the device on and then map the sound.  This site has a much more elloquent explination of mapping than I could offer.  If you are interested in the technical stuff, read this http://cochlearimplantonline.com/site/mapping-a-cochlear-implant/

Daddy praying over seth before the surgery

Waiting to go back ...

What the surgeon did ....

Recovery

Not happy in recovery, but ready to go home.

Incision site - day 1

Fancy bandage

Sucking those fingers ... one of his favorite stims to comfort himself

Not long after this picture, he came to me and held his arms up for me to pick him up  - FIRST TIME EVER !!!!!!!!

Incision site day 6

Incision site withot hair pulled back ... you can hardly tell he has an incision.

His handsomeness to bless your day!!!!

Cochlear Implant Q & A 2

How well will he be able to hear with the implant?

We do not know the answer to this question.  Hearing with a CI is a learning process.  After he has been implanted for about a year, we will know what his level of hearing is.  He will go through many mapping sessions that will help his brain learn to hear and to process sounds.

Cochlear Implant Q & A

How is Seth's hearing now? 

In November, Seth had an Auditory Brainstem Response test, also known as an ABR.  His results showed no response at 105 decibles, which was the limit on the testing equipment.  It is likely that his hearing loss is more profound than 105 decibels.  We were told if he was standing beside a jet plane, he would not hear it.  You can see in the audiogram below, a jet it plotted at about 120 decibels.

His hearing loss is bilateral, meaning both ears.  He is wearing bilateral, in the ear, hearing aids.  His testing, with hearing aids, shows reaction to sound at 80-90 decibels.  This is still considered prodound deafness.

At what point do you make the decision to go with an implant rather than hearing aids.
Since, Seth's degree of deafness is considered profound, even with high powered hearing aids, cochlear implants become an option to help him hear.

How invasive will the procedure be, what about recovery?
This answer is taken from our surgeons website.

The procedure is an outpatient surgery that takes about an hour and a half. It is performed under general anesthesia. The surgery is performed through an incision behind the ear. The surgery consists of removing part of the mastoid bone and placing the cochlear implant.

Will the implant last his entire life, can it be upgraded without replacement?
Likely, the implant will need to be replaced at some point.  No one knows for sure.  CI in children were started in the late 80's.  Some of those children are now having replacement CIs.  Yes, they are designed to allow upgrades.  They are also designed for easy removal of the magnet if there is a need for the child to have an MRI.

How will it affect any hearing that he has now, like when you wear glasses your natural eyesight gets a little worse as you depend on the lenses.
Typically, any hearing the child has will be lost from the implant.  Seth will only have one ear implanted to start.

For a brief explination, this video talks a bit about the procedure and highlights Seth's surgeon.

Thanks for answering any of these questions, I'm really interested in learning more.
You are welcome and thanks for asking!

Cochlear Implant Selections and Q&A Prep

Last week, we selected Seth's cochlear implant devices. 

We have chosen to go with Advanced Bionics .... that kinda makes me giggle .. my bionic boy!!!!!

They have what we believe to be a really great implant and kid friendly processor. 

The implant is called the HiRes90K™. 

http://www.advancedbionics.com/com/en/products/hires_90k_implant.html

We selected the Neptune™ processor.  We liked this device because it is waterproof, has a good impact resistance rating and has many wearing option.  The controls are removable, so there is no way for the setting to be changed without it happening purposefully. 

http://www.advancedbionics.com/com/en/Neptune/freestyle_design.html

We were able to select many wearing options.  We selected the arm band, a lanyard, and a harness.  It also comes with a pouch to put the processor in.  The pouch can be used in conjunction with all three wearing options selected above.  There is also a clip, that can easily clip to the back of his shirt.

http://www.advancedbionics.com/com/en/Neptune/freestyle_design.html

We got to pick fun colors in some of the equipment, such as  ... Ocean Blue and Sand Castle.  Other not so fun colors included; Black, White and Dark Sienna Metallic.

Once he is implanted and his mapping is being done, we are going to go with the ClearVoice™ sound processing choice.  Which helps you hear speech better.  We want to focus on Seth understanding speech. 

http://www.advancedbionics.com/com/en/products/sound_processing/clearvoice.html

There is also an option for a FM Device that would take my voice "directly" to Seth's ear.  It is normally used by a public school teacher in a classroom.  We will be looking at this option down the road as Seth progresses with the implant.

AB’s iConnect^TM accessory provides a cable-free connection to the FM systems most commonly used in schools, such as Phonak's Dynamic FM.   Designed to easily snap into place, it won’t fall off the ear or interfere with head movements.

With the iConnect, your child can listen comfortably and naturally, concentrating on the important lessons being taught in the classroom instead of fussing with cables or wires or continually repositioning their equipment.

Q & A Time ....

Do you have questions about Seth's upcoming cochlear implant?  If so, please leave a comment and I will address them (to the best of my non-bionic ability -hehe) in a future post

cochlear implant HELP

http://cochlearimplanthelp.com/


God bless!
Jen

Sent from my iPhone