I thought I should post this email from my sister – God is good and we have many things to praise Him for already through this situation!

Hello, dear friends and family!
Well, I have lots to update you on today, and I have to say, it is with a heart at peace that I write you today. Thank you, thank you for all your prayers, phone calls, etc.–they have definitely been appreciated! You have blessed us more than you know! For all our friends who are encouraging their kids to use sign with Masen or learn sign–you are awesome. Thank you for letting her feel welcome and making her parents feel like she’s not alone in this!

First of all, the surgery is set for Sept. 29th (Monday) in the afternoon. I’ve heard it will be a shorter, easier procedure than the first time, which is all great news! I’m also hoping that means it will be less painful for Masen!

We told Masen about the procedure Sunday after church, because, frankly, we knew her frustration level was really high after church! She had an interpreter for the first time in a class setting, and she was really frustrated. She couldn’t follow both the story being acted out on stage as well as the interpreter; she had to choose where her attention went. She was bored if she didn’t have the interpreter, because she had no idea what was going on. She took the news just fine; had a few questions–”what is it going to feel like?”, etc. She is definitely still processing it, because she keeps asking questions and making comments about it. She told me yesterday that “it doesn’t FEEL broken in my head…”. :)

We had our follow-up appointment with the audiologist today as well as the sales rep for Advanced Bionics; they wanted to do further testing to see if they could get more information on why and how the implant failed. On the way into the hospital, I told Masen that her implant might work for a little bit–turning on and off like before. Well, when we got into the testing room, they put her implant on and it WORKED for about 5 minutes! Her first reaction to me saying “hi! I missed you!” was a teary meltdown and an enormous hug that lasted a LONG time. So, we both cried and then were able to talk about her surgery and her new implant, which was incredibly helpful. The audiologist told us that we will get a full report of what failed, etc.

Also, Masen chose to have the BTE processor, which means she won’t wear her processor around her waist anymore, but behind her ear, like a hearing aid. She is VERY excited about this new implant, because (typical girl :) ) you can accessorize this one. :) It has little clips that you can put on the magnet–flowers, stars, rainbows, etc.–and she thinks it is QUITE fine. :)

Mom and Dad are excited about the new processor because they think it’s going to help her hear even better than before. The microphone is at ear level with this one instead of on the magnet at the back of her head, so it uses the ear’s natural funneling shape to funnel the sound into her microphone. Amazing, isn’t it, that God’s design is the best one?? :) When we got out to the car I asked her why she had cried when they put her CI on, and she said “because I was so happy!” Mom is truly happy today, too–what a gift to talk to my daughter again, even if only for 5 minutes! It really makes you think about what words you choose to say when you know your time is limited…I think I need to have that perspective with everyone in my life. I need to make my words count, because who knows when the opportunity to say them will come again!

Masen’s happiness has continued so far today–she is back to a little more of the bubbly Masen we all know and love. I think today was encouraging for her, too. :) She held her new processor in her hand, and she knows that she’ll be able to hear (Lord-willing) by her birthday at the end of October. I think it felt a little more tangible to us all today! The audiologist also told us that she will probably be able to turn it on, or activate it after 2 weeks post-surgery. Wonderful news all around today!

How thankful we are for the unchanging character of our awesome God. He is good even when our circumstances aren’t. I love that about Him–I can depend on Him. He will not fail me. He is there for me. He has promised to never leave me or forsake me. I can give Him all my fears and worries, because He is BIG enough to handle them. I hope you experience His grace today, too! Thank you for praying for us to feel His peace, because it is THERE.
Love you all!
Tiffany

[*Photo from http://www.cochlearamericas.com/products/11.asp]

Our family received some very difficult news this week. Before I go into the current situation, let me give some background.

My sister’s daughter, Masen (6 years old next month) was born profoundly deaf. We have all been on quite a journey together, obviously most difficult for my sister and her family. Speech pathologists, audiologists, ineffective hearing aids, [trying to keep hearing aids on a baby is no easy task], and preschool with other hearing impaired children have made life busy and challenging for the Krampe family. [We've all picked up some sign language, although Tiffany is far more fluent than the rest of us.]

When Masen was one year old, she received a cochlear implant. After she had healed from the surgery, the momentous day arrived – they “turned on” her hearing. Although it is a learning process for everyone who receives a cochlear implant to learn to hear, attend to, and distinguish sounds, it was amazing to watch Masen’s language just explode. Her language comprehension has been beyond hearing children of her age for several years – she is a remarkable little girl!

After almost 5 years of knowing and loving a VERY verbal Masen (who my sister often says is the most talkative deaf child she’s ever seen – absolute truth!), we’ve all gotten pretty used to the semblance of normalcy. There are still audiologists and specialists now and then, but Masen has continued to astonish everyone with how well she has done with the implant. For the most part, she seems like a hearing child who occasionally can disconnect her hearing!

Two years ago, they received a letter from the manufacturer of her implant. They were informing people of a recall. Now, I should back up and explain how the implant works (well, as much as my rudimentary understanding will allow!) Masen wears an external processor around her waist (it was amazing to see a $7,000 piece of equipment bouncing around on the back of a 15 month old), which is connected to a microphone piece which magnetically attaches to the back of her head. There is an internal component, obviously the plate in her skull which the magnetic microphone attaches to, and that connects with a small wire (I’m sure that’s not the technical term) which substitutes for the tiny hairs which hearing people have inside the cochlea of their ears. These hairs detect sound waves, and in some amazing way that God designed, they transmit that information to our brains and allow us to interpret sound. (how anyone thinks things like this happened by chance is beyond me!!) Masen does not have these hairs.

To allow her to hear, sound comes through the microphone, down to her processor where it is somehow translated digitally, sent back through the cable, through the magnetic connection, into the inner ear, and then the implant somehow communicates that information to the nerves and ultimately her brain. (I just exhausted my knowledge on that subject, and I’m not even sure how accurate it was. Tiffany, please post comments to correct any misinformation there!!!)

Anyway. The manufacturer informed them of a recall. Not of the external processor – of the internal implant. There had been one or two cases of failure because of a faulty part. Masen’s had been working fine until this past year. They have had intermittent problems with it, always attributed to the processor.

On Tuesday, Masen came to Tiffany and told her that her “special ear” wasn’t working. Tiffany checked the cable, replaced batteries, checked connections – all the usual suspects were ruled out. They went to the audiologist on Wednesday and found out news that none of us wanted to hear – Masen’s internal component has failed. Her surgery will have to be repeated.

By the time insurance hoops have been jumped through and the surgeon is available, they have been told it will probably be October or November for the surgery. Add 6 weeks or so of healing before it can be turned on, and that is a long time for the effervescent social butterfly of the family to be cut off from the hearing world. The surgery is also very invasive. They will have to remove the plate from her skull (since it was implanted when she was a baby, the skull has formed around it) and re-implant her. There are obviously risk factors for major surgery so close to major facial nerves, etc. And, we won’t know until her new implant is turned on if this new one will allow her to hear as well as her current one.

Masen does not yet know that she will have to have the surgery again. She has been afraid and adamantly opposed to the idea of surgery for a second implant in the past (Tiffany and Adam have been encouraged to consider doing an implant on the other ear to improve her hearing even further, as she has responded so well to the first one.)

I have never used my blog for this before, but I ask you to please pray for Masen. There are many variables in play here – insurance response time, surgeon’s schedule, effectiveness/ safety of the surgery, Masen’s response to the need for it, etc. Please also pray for their family, extended family, and close friends – we’re all very rusty on sign language (we use it with her sometimes – my sister uses it often – Masen doesn’t wear her “special ear” to bed, in the water, etc), and she will be very dependent on it for the near future. Pray for quick comprehension and retention for everyone!

Thank you for your prayers. I will update as we get more information.