What's the Word Bird?

Oh I am so overdue for an update.

Things have been a wee bit crazy around here!  I'm feeling a bit like a whackadoodle!!

So here's the best way I can explain this:

REGULAR INTERNATIONAL ADOPTION PROCESS:
Apply and complete application for homestudy agency (your local agency)
Complete homestudy (a big packet o' paper about your family)
Apply and complete application for placement agency (they actually have the program in your country)
Complete dossier (the big 'ol packet of paper that gets sent to your country of choice)
Dossier arrives in said country
Dossier is reviewed, translated, and logged in to the adoption authorities
Referral of child
Acceptance of Referral
More paperwork and waiting
Travel to visit (most countries now require 2 trips, one visit, one pick-up)
Wait
Travel to pick-up child

SCHMIDT ADOPTION #2 PROCESS:
Call your social worker at your homestudy agency and say "We're ready to do this again!"
Referral

See how whackadoodle this is?!

Here's a peek at our timeline:

March 17th-Officially decided to adopt again
March 17th-25th Explored and prayed over all adoption options (domestic, international, foster)
April 27th-Reviewed country choices for our first placement agency of choice, All God's Children International (AGCI) in Oregon
April 28th-Submitted free pre-application for All God's Children International-chose the Philippines
May 1st- Began working on gathering medical letters in support of Jeremy's stable health
May 2nd-Touch base with our homestudy agency Special Children Inc. (SCI)
May 7th-Jeremy's personal medical letter sent to AGCI
May 14th-Confirmation-alll medical letters have arrived at AGCI, approved by social services department, but still encouraged to choose another country-we choose Bulgaria
May 31st-Touch base again with SCI
June 7th-Phone call with Deb, our social worker/case worker at SCI (we used her with AJ's adoption too!)
June 8th-(Our Anniversary) SCI Homestudy Packet arrives
June 14th-Announce to family and friends we are adopting again!
June 20th-Creation of our Adoption Puzzle Fundraiser on GoFundMe
June 20th-First puzzle piece donation made!
June 20th-Submitted formal application and fee to AGCI
June 21st-Received initial call about a little girl in Bulgaria who needs a home through another placement agency-Americans for International Aid and Adoption (AIAA) in Michigan
June 24th-Received official referral information for Mimi
June 25th-Submission of referral documents to pediatrician, ophthlamologist, University of Minnesota International Adoption Clinic, PT, SLP, and Vision Specialist
June 27th-Accepted Mimi's referral
June 27th-Letter of Intent specific to Mimi signed and notarized
June 28th-(AJ's birthday) Announced Mimi's referral publicly
June 28th-Mailed Letter of Intent to Secretary of State in Madison, WI to be apostilled
July 3rd-Received apostilled Letter of Intent from Madison
July 5th-Mailed apostilled Letter of Intent to AIAA
July 5th-AIAA Packet with Formal Application arrives
July 8th-Letter of Intent is received at AIAA
July 19th-Confirmation that Letter of Intent is in Bulgaria with the translator
July 23rd-SCI Homestudy visit/75% of required documents, including formal application and fee are submitted
July 25-27th-Operation Mimi Rummage!
July 25th-Formal application, fee, and other forms sent to AIAA
July 30th-Officially place our application on indefinite hold with AGCI and inform them of Mimi and AIAA
July 30th-Confirmation from AIAA that Letter of Intent is at the Ministry of Justice (MOJ) in Bulgaria
July 30th-MOJ requests POA, Declaration, and Personal Statement to be completed and submitted ASAP
Homestudy report completed
Apply for adoption grants and scholarships
Dossier packet arrives from AIAA
I-800 Apply to USCIS for Immigration Approval & Obtain Fingerprinting Appointment
Wine/Beer Tasting & Silent Auction Fundraiser
Wait on immigration approval I-171H
Dossier put together
NOVEMBER AT THE LATEST-Dossier sent to Bulgaria
Dossier logged in at the Ministry of Justice (takes 2-4 weeks from arrival)
Travel to visit
One month lapses
Travel again to pick-up-Mimi!

Other updates:
We are just short of 200 pieces of our puzzle being claimed!  Wahoo!  Jeremy and I so enjoyed documenting our puzzle peeps on the back of each piece when the first hundred were claimed!  We're excited for the next hundred....

Our rummage was wildly successful!  We had three days of Operation Mimi full steam ahead.  Thursday was our best day, with the rain putting a damper on Friday and Saturday being football weather.  We sent Jeremy for hot chocolate it was so cold.  Thank you to EVERYONE who donated, brought tables, made simply sinful baked goods, and prayed over our rummage and our baby girl!  We are blessed.  I will post soon about the most humbling experience I've had since we were in Guatemala picking up AJ.  It's a doosie.

You'll notice some new features on the blog on our right sidebar...we've added time and weather widgets for Sofia, Bulgaria.  It's always nice to know when Mimi's having a sunny day.  We've also added the timeclocks for when we both finish school...so looking forward to zeros on those clocks!

So that's the word bird.  We'll be sure to update everyone as things proceed.  That is the beauty of cut and paste, folks.  Yes.

Be strong and courageous, and do the work. Do not be afraid or discouraged, for the Lord God, my God, is with you. He will not fail you or forsake you...

I Chronicles 28:20

48 hours

I called our new primary insurance company this morning to ask a few questions. The most important: Did you receive the paperwork for AJ's cochlear implant surgery?

I learned that Children's Hospital WI (CHW) is considered in-network. YEAH! No more referrals for everything under the sun. I was told about our new deductible, out-of-pocket, and % of coverage. All good things. Again, I was told that the CI would be covered, as long as it was authorized. The rep offered to check and see if they had received the paperwork yet. Answer: No. BUT, that answer was followed by "Well, they do have 48 hours to give you an answer."

"Not 48 days?" I said. Wow. Could this really be? Light is beginning to glimmer...

It then occured to me that I was unaware of how exactly we were submitted (this particular time). I thanked the rep and told her I would call back tomorrow to check on our status again. I placed a call to our CI Program insurance person who told me we were faxed, not once, not twice, but three times. She stood by the fax machine to make sure it was received and she had written confirmation by the fax log. She stated she'd never had a turn-around as fast as 48 hours from our insurance company, but...she'd give them a week to get everything scanned into the system and to the appropriate person and then start calling them. I'm beginning to really like her.

We have already decided that we will be on the cancellation list. After therapy tomorrow I will head out to find button up clothes for our little man to wear post-surgery. And maybe an ace bandage so we can practice wrapping his head. Maybe we'll start an overnight bag as well...nothing wrong with being prepared.

Sad

Today is December 31st. Which in our world, means AJ's surgery is definitely not happening this year. Every time the phone rings and says "Children's Hospital" (we have talking caller ID) I jump out of my skin. They even called today. We sort of crashed and burned yesterday. I fought off tears most of the day...while calling AJ's providers and faxing our new primary insurance card and AJ's updated state insurance card. I called our CI Program admin and faxed the info to her first. She said she'd get it to our audiologist as soon as possible. I also called our new insurance and inquired about CIs. The person I talked to stated that it would be a covered benefit if it was deemed medically necessary and authorization was obtained. But, I could tell she was a bit unsure...so we'll see. She gave me the number for the medical manangment team as well. I included all of her information in my fax to our CI program admin.

We recently were told that our surgeon's OR time was being cut back...and that the entire CI team was getting incredibly frustrated. What does this mean? We could be scheduled weeks out-more than the original 3 weeks we were told. This cut in OR time could mean longer. I left another message for our CI program admin asking how far our surgeon is booked out he is already in the OR for 2009.

We've been going back and forth with our surgeon regarding choice of implant. We wanted the skinny on MRIs from his perspective. In Europe & Canada, one of the CI devices has been "ok" when MRIs were performed-while wrapping the head of the patient in gauze. The FDA is currently looking at this. Whether they will approve or deny is unknown. We also heard back from AJ's neurologist. We are armed with more information and must make a choice.

We've done everything we can on our end. This is a lot like when we were waiting for AJ. Totally out of control. And it SUCKS. We finally got him, got him the care he so desperately needed, and now we are stuck. Waiting. Still. Again. Every day that passes is a day that AJ isn't hearing. We've been given this awesome opportunity to allow our child to hear, and we just can't seem to cross the bridge to get there.

We are sad, but tomorrow is another year. Everything happens for a reason, although to be honest, we don't see the reason in this situation....

Best wishes to you and yours for a Safe, Healthy, Successful, and Happy New Year!

Alphabet Soup

On the way home from Great Grandma Annie's this afternoon, I found myself signing and singing the alphabet song. As we drove home in the faster-falling snow, I tried to match my signed letters to my singing speed. "A,B,C,D".... I didn't get stuck until the end, trying frantically to figure out the easiest way to sign "Now I know my ABCs, next time won't you sing with me."

Pretty proud of myself for improving this skill over the last few months, I turned to gain AJ's approval. Recently, we moved his carseat from the middle of the backseat to the right seat. I did think I'd like it, but it is great. He can see me much better when I sign to him, I don't have to turn around like a twizzler to see what he's doing, and it will help create more language opportunities in route to our destinations. So anyhow....There he was, sound asleep. Hm. I guess I sang and signed my baby to sleep. Ok, fine. The car ride did it. One must give credit where credit is due. Our little critter is so tired these days. From the time he's up till the time he's napping or down for the night, he's "go go go." He walks to and from everything. You can tell his little body is tired, but he's totally enjoying his new found freedom.

In addition to today's ABCs in the car, our heads feel like a bowl of alphabet soup. All these letters with "other information" floating around. We are having a major struggle deciding what brand of implant AJ will receive. Our issues are with size, weight, wearing options, and most of all THE MAGNET.

Ugh! Why is this such an issue? Well, the magnet inside the interal device (under the skin) "catches" the magnet in the external device's coil. The coil sits on his head and stays there by way of the two magnets. However, patients with CIs cannot have MRIs. Let me take that back. Patients with MRIs can have MRIs up to a certain Tesla-2 or 3. They don't make MRI machines that "low" in Teslas anymore. The magnet of the MRI vs the magnet in AJ's head could cause serious damage and even dislodge the implant inside his head.

One company has a removable magnet. Now, this would still require a small surgical procedure to remove the magnet, have the MRI done, then replace the magnet. But it sure beats having the whole implant removed and re-implanted. We are not sure AJ will ever need another MRI. But, since he has cerebral palsy, we must take that into consideration. I placed a call to AJ's neurologist to get his opinion on future MRIs etc for AJ. Recently we joined a cochlear implant group online and learned that another member's child had been implanted without a magnet. They shave a small part of their child's head and use a special tape to keep the external coil attached to the child's head. I am not sure if this is even a possibility, or even necessary, but I have placed a call to AJ's surgeon as well on this issue. We'll see.

I spoke with AJ's SLP today and asked her recommendation for which type of communication she feels AJ would do well with post-implant. We discussed at length. I was happy to hear that Jeremy and I do not have to decide yet, nor do we have to set something in stone. He is one they truly believe we'll have to "wait and see" what he does post-implant. AV, AO, TC, CS....AHHHHHHHHHHH!

What ever happened to the days where we'd play in the snow and then come inside to Mom waiting with some yummy soup? I betcha it wasn't alphabet either :)

This is Our Grown-Up Christmas Wish

Today I get a free pass for skipping ahead and talking about Christmas. Why? You'll see....

We met with AJ's audi today to have our device discussion. We sat down with her (while AJ played on the floor with every toy he could find) and asked LOTS of questions about the three different implants available. Our surgeon implants all three devices. So we couldn't just say, "Oh, your most familiar with this one, ok, let's do that one." Alright, we'd never say that anyhow, but you get my point.

We were pretty set on which implant we wanted, and then today, AJ's audi threw a wrench in the mix. We are now considering two of the three companies. Each have pros and cons. We have a while to make a decision. She encouraged us to call the customer service lines for each company and ask what/how much support they offer their CI families. We will continue to research as much as we can before we make a firm decision.

You can find the links for the three implant companies HERE, or by scrolling down the page, under "cochlear implant links".

We were able hold and explore the implants-both internal & external devices-in our own hands. As if that wasn't mindblowing enough...AJ's audi asked us if we wanted to try any of them on AJ. Um, YEAH! Of course, he wailed when she went near his left ear. He's been wearing the new Huggie on that hearing aid and well, its not pretty when we put it in/on....

To see the coil on my son's beautiful head of black hair and the speech process behind his ear...wow. This is real. To touch the magnets, the titanium, to bend it, feel the electrode arrays....wow. We left calm, collected, and armed with a device comparison sheet to further help us decide over the next few weeks.

As for why I'm skipping ahead and discussing Christmas. Well, let's just say the rollercoaster isn't stopping. Naturally, we discussed the fact that we are waiting on insurance approval for AJ's 1st implant. AJ's audi informed us that Dr. Wackym is fully aware of our insurance issue (acquiring new insurance as of 1/1/09) and if the T19 approval comes through before the end of the year, he will do everything he can to accomodate us and do the surgery as soon as possible. Meaning, he basically has the right to override the " scheduling at least 3 weeks out" rule we were told originally. I swear, my new saying is truly, "I'm sorry, what did you say?!" Wait, its gets better...we asked what their average had been as far as time T19 was taking to approve CI surgeries. She answered: around a month. So, if we are super duper lucky, AJ's surgery could be approved around 12/7 and our little man would be implanted by/around/during Christmas.

This is truly Our Grown-Up Christmas Wish. We are determined to stay positive and know that if it doesn't happen before Christmas, there is a reason. But if it does, there are two parents who will be lit up like a child on Christmas Morning.

Booth Testings DONE

Yesterday AJ had his SIXTH & FINAL Booth Testing in the cochlear implant process. Phew :) Can you believe we've gotten through six of them?! The left ear (unaided) was tested. Results-almost identical to the right ear unaided. Response to speech at 105 dB. He's such a pro now. He didn't even try to grab the wire this time.

We were given a copy of a very nice audiogram chart (speech banana chart). It shows a lot more "sounds at different levels". His audiologist plotted his responses on this chart so we could see where he is hearing. A jack hammer was one of the items listed below 95dB. Just because its that loud to us, doesn't mean its that loud to AJ. Given his level of hearing loss, a jack hammer sounds like a whisper to him. WOW. Just incase you would like to compare-you and I hear a whisper at around 10-15dB. Please refer to our chart.

AJ received his new ear molds for his hearing aids as well. They are fire engine red...he is one cool dude!! They also gave me a "Huggie" (no not the diaper) to keep his left hearing aid on his hear. His left ear is a bit floppy (expected since his left side is weaker in general) and he has a shallow "bowl" (area where your finger goes when you plug your ears). It is really a neat device. I'll post a picture of him with his new molds soon.

I also asked why hearing aids do not benefit those with hearing loss such as AJ's. The short version: His hearing aids are very powerful now. Given that they are turned up so high, what he is hearing (environmental sounds around 75dB consistently) is really really distorted. So turning them higher would not help him reach the speech banana. He would not develop speech because the sounds would be even more distorted. Even so, we must keep having him wear his aids. We are stimulating that auditory nerve. This is all in preparation for the cochlear implant. Hopefully, this stimulation will help him to "tune into" the hearing world a bit easier and detect sounds better.

Next on the agenda: Tomorrow-Surgery Consult with AJ's surgeon....

CI Device Discussion

On November 24th, we will meet with AJ's CI Audiologist and discuss the three different cochlear implants available. This meeting is called a device discussion. There are three diffferent implants available:
Cochlear
Med El
Advanced Bionics

We will choose which implant AJ will receive.

IEP Workshop

Last week, I attended an IEP workshop at the Center for the Deaf & Hard of Hearing. Whew! Lots of information. The workshop focused on the transition from Birth to Three into IEP/School Education. IEP stands for Individual Education Plan. AJ currently has IFSP Individual Family Service Plans under the Birth to Three Program. IFSP meetings consist of the parent(s), child, Birth to Three service coordinator, and all your child's therapists (through Birth to Three) meeting together and discussing your childs needs, progress, and new goals. AJ's are around every 6 months.

Once he turns 3 (June!) he will transition into the school system. In February of 2009, we will have a transition meeting, to ensure that AJ's move from Birth to Three to the school system is as smooth as possible. We will then have an IEP meeting with the service coordinator for the school, the schools staff (therapists etc that would be providing AJ with PT, OT, Speech, etc.), any of AJ's current therapy team that we the parents want present, and us as parents. Whew!

I would encourage anyone and everyone who's child is going to be transitioning to attend a workshop or class designed to help with this process. It is a lot to digest.

I don't have enough room/time to explain all of the information that was given. However, I wlll share one thing that stands out in my mind. You as a parent are the biggest advocate for your child. Go into that meeting educated, do your research, and don't back down on what you truly want for your child. You may have to fight, but its for a great cause. AMEN!

I'm Sorry, What did you SAY?!

Yesterday AJ had his 5th Booth Testing. Yep, he's a pro now. We did right ear un-aided, which was interesting. His audiologist took the ear mold off his hearing aid and placed it in his ear. Then she attached a small clear wire/tube that was connected to a small box that was clipped to the back of his shirt. This time, instead of sending sounds into the booth via the speakers in the corners, she put the sound directly in his ears.

It was very interesting! When he heard something, he'd scrunch his neck to his shoulder (think: bee buzzing by your ear reaction). He also did some great head turns.

We managed to finish the entire right ear (amazing!) and then went over the audiogram, as usual. Since AJ's ABR test showed no response in either ear, we were anxious to see where he really hears without the aids. AJ heard speech at 105dB. Please see our Speech Banana post to see what this means. In short, it means without his aids he hears nothing, except maybe a jet engine right next him. This is no surprise.

What his audiologist said next completely floored me. She stated, "The cochlear implant team (CI Team) had met yesterday and discussed AJ's case. With the right ear tested, we now have enough to submit to insurance. We will be submitting for the right ear first. Since that is his strongest/better motor skills side. We will submit before you see Dr. W on November 7th. It usually takes 30-60 days for pre-authorization. As soon as we receive PA, we'll schedule surgery."

"I'M SORRY, WHAT DID YOU SAY?!!!!!!!"

Seriously, I am still in shock. We were not expecting that news yesterday-BUT WE'LL TAKE IT! We've put another ticker on top of the blog. We're hoping for approval in 45 days or less SO, we set the ticker for 45 days. Well let everyone know as soon as we know!!!

YAHOO!

All Clear

AJ had ear tubes placed in both ears last October. In May the left was extracted. In September, the right was extracted. He is now tubeless :) It seems every time, and I mean every time, his audiologist looks at his ears it means another trip to either the pediatrician or his ENT. AJ has a wax problem . He also has super small ear canals. He never tymps very well and there always seems to be something blocking their view into his ear.

Of course this happened on Monday, at his 4th Booth Testing. Fluid would be bad right now. Did I say bad? It would hinder the CI process and slow us down. It might also mean his ENT would consider putting new tubes in his ears. Since AJ has speech/feeding therapy on Wednesdays, they got us in to see an NP at the ENT Clinic (just down the hall from where we are for therapy). Thankfully, his ears were all clear! No fluid!! Good news!

As if that wasn't trauma enough, we also took new ear mold impressions yesterday. His new ear molds for his hearing aids are ordered and should come in around a week. I chose red this time instead of clear. One, AJ's favorite color seems to be red so I figure when we say/sign "Its time to put your ears on" he'll see them better and this way we'll be able to tell if they are really fitting in his ears correctly. Oh, and when they fall out, they'll be easier to spot on the floor :)

Booth Testing #4

We have now completed audiograms (booth testings) for both left & right ears with hearing aids. Today we finished the left ear. AJ responded to speech at 75dB. He responded to higher frequency sounds at 90dB+.

It is rather interesting that both ears were at about the same level-aided. Since his ABR test (original test that told us he was profoundly deaf) showed NO response in either ear...it will be even more interesting to see how he tests un-aided.

We have three more booth testings scheduled over the next three weeks. We should have all of the information required to submit to insurance in mid-November, after our surgery consult on November 7th. Reports from AJ's CI Audiologist, Speech-Language Pathologist, Psychologist, and Surgeon will all be submitted to both our primary insurance and secondary, AJ's state insurance. We know that our primary will deny the surgery/implants. This is not new news to us (LONG STORY!) However, we just recently learned that submission is done at the same time for each insurance, so we will not have to "wait" for the denial from primary to submit to secondary. They have 30-60 days to provide pre-authorization or denial.

What do the booth testings show? The booth testings show that AJ's hearing/paying attention to sounds. His head turns mean he is actively looking for the source of the sound. These are great things. It shows that he does have an auditory nerve to stimulate inside that brain of his. Because his ABR had no responses, it was unclear as to whether he had an auditory nerve to stimulate. The testings also tell us at what levels he's hearing sounds with his hearing aids and without (soon). He's been consistent at around 70dB with low freqency sounds. To see the different frequency/dB levels please view the speech banana chart HERE.

I also had a very in depth conversation with our audiologist and SLP today. Without going into detail, let me just say it was long overdue. We are finally all on the same page....

AJ's surgery should be around Christmas, providing insurance gives us approval within a reasonable time frame. The team is now aware that we do want to pursue bilateral implants for AJ. Our surgeon does not do them simulatenously. We are going to submit to insurance for one first. If we submit for two (to state insurance) it will most likely be denied, or stalled due to further review. Rarely do they approve bilateral at once. So, given that the team is now aware that we want him to have two, he will most likely have his surgeries a few weeks to a few months apart. The great thing: providing we do the 2nd implant within 18 months of the first (Um, yes!), we do NOT need to repeat all this testing!! Till the next booth testing...

"Dr. Bob"

Fears Relieved....

We had AJ's psychological evaluation this afternoon. It went well. A lot of nerves, anxiousness, and fear...all for nothing. Dr. Bob greeted us by saying, "This must be the famous AJ." We sat and talked for a few minutes (while AJ acclimated to the room).

Dr. Bob asked us:

• Are all of your questions being answered by the CI Team? Yes
• Do you have any concerns regarding the surgery? No
• Are you absolutely sure this is what you want to do? YES!

Dr. Bob then did the "testing" for AJ:

• Presented a "ferris wheel" toy AJ had to spin 4 times to prove the skill
• Presented a rattle that's "top" was a ball that spun (think arcade golf-use the rolley-ball to "swing"). He had to spin it to find both sides and play for 30 seconds
• Presented AJ with "bear popper" toy. AJ had to push down with his hand to make the bears spin
• Presented AJ with wire maze toy on a string. Dr. Bob dangled it/hid behind paper/AJ had to track it and then was rewarded with the toy.
• Presented AJ with small plastic bear figurine and a nesting cup. AJ picked up bear. Dr. Bob placed bear under cup and AJ retrieved it.
• Presented AJ with 2 nesting cups and bear. Bear was placed under one cup. AJ found it on 1st trial. 2nd trial he searched under both cups. Object permanence skill was proved.
• Presented AJ with small bear inside a clear plastic rectangle toy that had "shelves" inside of it. AJ was not able to figure out how to get the bear out (this was expected).
• Presented AJ with 3 small wooden blocks which he was to stack. He grabbed them, but did not stack (this was expected as well).

AJ has delays. This is no secret. Whether his delay will continue or be permanent remains to be seen. As always, we received the answer, "We'll wait and see what he does." This time, in regards to the implants. He's making gains and that show us he's not "not learning" but he's also not "learning @ 100%", he's somewhere in the middle. We did hear something that we have not heard, I think EVER, which gave us some piece of mind. There are certain characteristics AJ displays that Dr. Bob told us, are "typical 2 year old."

We asked if Dr. Bob thought AJ (individually) would benefit from an implant. He told us he sees several good things:

• AJ is alert.
• AJ is inquisitive
• AJ aware/participating in his surrounds
• AJ is making progress.

No one knows how he will do with an implant, but we have good reason to believe they will only help him! We will follow-up with Dr. Bob in one year. After Dr. Bob we had a brief meeting with a social worker. One hurdle down, a few to go!

What is a Cochlear Implant?

PLEASE CLICK ON BOTH FDA LINKS LOCATED UNDER OUR NEW "COCHLEAR IMPLANT LINK" LIST.

A cochlear implant is a surgically implanted device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. It is often called the "bionic ear". The basic device consists of 2 parts: internal & external.

Here is what we know as parents:

Average surgery time is about 3 hours. A small incision into the skin will be made behind the ear. A "pocket" is created in his skull bone to "hold" the implant. This will allow for a flat appearance of the skin on the outside, no bulge. The implant will be inserted, and the electrode array will be run into the cochlea. (The array looks like thick sturdy fishing wire with a small loop on the end). The cochlear is shaped like a snail, so it will be wound around until the loop is in the middle. The internal device has a magnet inside of it. Since the implant is covered in silicone, the moisture cannot reach the device itself.

A few weeks after the surgery, the external piece comes into play. This is when a recipient of an implant actually hears. The audiologist will position the coil (which has another magnet) over the internal implant and given the two magnets-the coil should "stick" on the head to the other magnet on the other side of the skin. This is how the coil stays in place. The coil will be attached to the cable, which is connected to the processor. The audiologist will activate the implant. They will start with soft levels of sound, and begin mapping. (Mapping will be explained in a different post). We will be given a program, that will increase sound levels day by day. It takes quite a while to get the implant programmed "just right." The illustration above shows the BTE (behind the ear) processor, but since AJ is still so small, we will probably have body-worn processor first and then transition to BTE. Depending on which implant we choose, the style may be a tad different than above, but they are all basically the same in shape.

A cochlear implant does not cure deafness. It is a prosthetic device to enable hearing. AJ will not wear his CI while sleeping or swimming. We will still have to consider what to do in the event of a fire (he won't hear the smoke detector) and other similiar situations. Research is showing the benefits of bilateral cochlear implants. While we are in the process for one at the moment, we hope that a second implant is in his future as well.

Any questions/comments? Leave a comment for us.

Worlds, Choices, Difference

Wow.

Well, we've been exposed to a lot of different worlds since AJ came into our lives. We now can add the world of blogging to our list. I've had my own business blog for a while now, but with Sir AJ, I haven't devoted much time to it. Early in the process, we were told to "stay away from blogs." Now one, I had no idea blogs regarding children with cochlear implants existed. Two, naturally the "banning" of such activities peaked my interest. For the last few weeks we have read multiple blogs written by families with children who have CIs. What a wonderful world!!

We have learned much. Learned from the human perspective...which is something we have longed for since they said, "Your son is deaf." You can give me all the facts/figures/charts you want, but at the end of the day, as a human, woman, and mother, I want more than that. Give me a should to lean on, or in this case, a cyber shoulder to lean on. Someone who knows what its like to hear those words and live life from that moment on. Give me comfort in knowing that I am not the only person wondering why this is taking so long or fighting insurance. We are not the only ones who have rough days. Give me strength in knowing there is a light at the end of this dark, dark tunnel. These blogs helped encourage AJ's Dad and I to begin this blog. For any of the families who's blogs I have read, and happen to read ours...Thank You.

Choices. Sometimes choices are overwhelming. Anyone that knows me knows that I love paper. I think I was born to be a paper-pusher. However, the one thing we cannot wrap our head around is the 3 different cochlear implants we are to choose from. We brought all three information packets home 2 months ago. We began reading through them right after our appointment. We discussed which ones peaked our intrested at first glance. Since, we have not been able to make a decision. Don't get me wrong, we are ever thankful that this whole process is a choice and that we even have "hardware" options. However, right now, OUR processors are on overload. We'll revisit the information again this week.

For family and friends that are coming over from AJ's previous website: You will notice that this blog has an entirely different vibe/setup. AJ's Dad and I found ourselves sugar-coating things when posting an update. While we do not intend this to be a negative space, we do want to be honest. This blog is meant for us to share our feelings, record AJ's journey to CIs and beyond, record AJ's progress with his other health/development issues, and to help other CI and/or CP families. Thanks for following our little man!

Speech Banana

Don't worry, when we first entered the world of hearing loss we didn't know what the heck a speech banana was either....

In short-the speech banana, and above, is our GOAL. As we mentioned before, AJ has profound loss so without aids, he hears around 100-110 dB. With his hearing aids, we've gotten consistent responses in the 70dB range. This makes sense, as he's always ripping his aids out when we are on the freeway and the windows are open. Can we say, semi trucks and loud wind? We think he can hear the low keys on the piano as well.

Above is an illustration of the speech banana. The picture symbols represent the different sounds that can be heard at each level. For example, a tree's leaves rustling is very soft and high pitched, but a semi truck is very loud and low-pitched. In the middle of the chart are all of the speech sounds. They call it a banana because when you draw a line around the speech sounds, it makes the shape of a banana.

Booth Testing #3

AJ had his 3rd Booth Testing yesterday. It went well. He makes it through about 1/2 of a typical testing time and then he starts ignoring us all. AJ, Mommy, and the Speech Therapist all sit in the booth. AJ's Audiologist sits outside the booth and uses the computer and her voice to do the audiogram (booth testing). It is a 6x6 (maybe!) room, with four padded walls, sound-proof, and I swear at least 20 degrees warmer than the rest of the building. Mommy sits behind and bounces him lightly on the yoga ball while his speech therapist watches his face for reactions to sounds/directs him to the rewarding lights/toys in the corners of the booth. By the time we are done, Mommy gets a great arm workout! We then go outside the booth and look at the chart which shows at what levels AJ heard the sounds. He is still doing some fantastic head turns!

We have the rest of the left ear-aided to do, followed by both ears un-aided.

Psychological Evaluation: 8 days
Booth Testing # 4: 11 days
Surgeon Consultation: 36 days
**Possible extra Booth Testings inbetween
Submit to insurance: ________
Pre-Authorization Given: ______
Surgery Date: ______ (estimated around Christmas)

His molds for his hearing aids (the part that fits into his ear) are not fitting properly. We'll be getting new molds soon. The whistling they make when they don't fit right never used to bother him. Now it really does, so much so that he rips them out... While the whistling is not good, it is good that we know he can hear that and it bothers him enough that he acts upon it.