Sunday, November 30, 2008

Kay Jewelers Commerical-Featuring ASL

Jeremy and I just saw this commercial and I had to find it on YouTube and share it with all of you. Remember to disable the playlist above before playing the video.

Saturday, November 29, 2008

Sharing...

This is what sharing looks like in our house...



Last week, AJ's Early Ed teacher brought a brown box for us to give him "box rides" in. While doing so, we vocalize & sign "Goooooooooo", "Weeeeeeeeeeee", "Stop", and "You want more?". The goal is to get him to vocalize purposefully when he wants another ride. AJ loves his rides but also enjoys tipping the box over and crawling out. He now has to compete with our Queen of the Boxes, Sugar. She shared with AJ, how nice....

Four Generations

On Thanksgiving, AJ's 'Drama Cheri and Great Grandma Annie spent the afternoon with us. We have four generations represented by my family. AJ is one lucky little boy!






Pumpkin Pie, Me Oh My

WARNING: You are about to view pictures of a very messy child! Think of it this way...it is an AWESOME sensory experience for him!!





Sing It Frankie...

We've changed the playlist (song list) on the blog a bit. The first half are Christmas songs, the second half are "regular" songs. So feel free to browse around and choose your own listening pleasure while reading. Note: Usually, when we post, I try and put a song that relates at the top of the playlist. Yep, I'm that detailed....

While browsing for songs, we noticed something. Most of the songs we chose are "oldies." You know, the ones that remind you of your Aunt's house on Christmas, Grandma playing the old record player, baking cookies, decorating the tree, or shopping in the mall.

They just don't make music like they used to, do they? I guess it depends, but in the realm of Christmas music...most of the songs put out by today's popular artists are remakes. The likes of Frankie, Burl, Andy, and Bing are...well, are hard to find. Nevertheless, we enjoyed putting this together.

AJ's Dad's favorites: "Grandma Got Run Over By A Reindeer" by Elmo & Patsy and "The Christmas Song" by The Chipmunks. He chose these as they bring back happy memories with his Grandma Schmidt.

AJ's Mom's favorites: "White Christmas" by Bing Crosby and "Nutcracker". I chose these because they remind me of putting up our tree while watching the movie "White Christmas" and seeing the Nutcracker ballet almost every year.

Enjoy!!

Friday, November 28, 2008

"I wish I had better news..."

One year ago today, we were told our son was deaf. Wow. I can't believe it has been a year....

A few weeks before, we had brought AJ in for an MRI, so we were familiar with the procedures in Day Surgery, etc. Due to major miscommunication between AJ's first ENT (grrrrrr) and the scheduling staff, his ABR test was done last minute. I brought AJ by myself. AJ was given his "joy juice" and was rolled out to begin testing. I called my Mom-she was at the hospital with my Dad. I remember talking to my Dad and looking out the window of the room. He told me everything would be fine with AJ. I asked how things were going with him and he said they were doing some more tests. Should be a short visit here, he said. AJ was already gone in testing before Jeremy arrived. He had come straight from work to meet me there. We had had a fight earlier in the day, so when he arrived there was tension. We focused on being parents and addressing the issue at hand. I shared with him that a different audiologist was doing the ABR test, as the one scheduled (who had seen him previously) had an emergency.

We knew, from the moment we got AJ in Guatemala, something was not right. We thought at first he was ignoring sounds etc. due to the loudness in the orphange. We even did the "Mr. Holland's Opus" movie scene and dropped pans on the kitchen floor. AJ didn't flinch. We had fought to get him into the audiology clinic and succeeded, only to have him fail every test. We were told, FLUID. Sound familiar anyone?! He probably has fluid in his ears, so lets get that checked out. Our insurance required us to go to a general ENT (grrrrrr) who placed AJ's first set of ear tubes. No fluid found during ear tube insertion, but they put them in anyways. A few weeks later, still no fluid, the ABR was finally ordered.

A small, petite woman came into our "room" and introduced herself as the audi that had done AJ's ABR test. Whatever we had fought about earlier in the day no longer mattered. As soon as she walked in, we knew, and as a team, braced ourselves for what we were about to, ironically, hear. Her first words regarding the test, "I wish I had better news." We pushed to get the truth out of her. It was the first time of many we would say, "Don't sugarcoat it, just tell us." She finally told us AJ had no responses in either ear, that our son was deaf. Completely deaf. She tested as far as the equipment would go up and no response. We both responded with "ok." Where do we go from here? She began rambling about hearing aids and some books she'd give us about babies and hearing loss, and even mentioned cochlear implants briefly. She was trying so hard not to overwhelm us. The one thing she said that sticks out in our mind, "Well try hearing aids, but I will be honest, they usually don't work for his level of loss." She gave us her card and stated she'd taken ear mold impressions (at which time I thought, what are those?) and said she'd call us to set up an appointment for hearing aids. The hospital had loaners we could use.

I don't remember what happened after that. Somehow we got out of there and I must have asked Jeremy to drive AJ home, and I drove his car home. While sitting in bumper to bumper traffic on Hwy 100, I called Jeremy on his cell. I was bawling. I felt like a semi had just hit me head on. Did she really just say my son is deaf? While a parent has a gut feeling, that instinct, you still hope, and pray, that somehow you are not RIGHT. I don't remember Jeremy's response. I called my Mom and shared with her, and tried my best to fight back the tears. She was still at the hospital with my Dad. In all her worry, she said everything would be ok.

We arrived home and AJ went down fairly quickly. I pulled out the books the audi had given us at the hospital and tried to make sense of them on the couch. The only part that made sense that night was the section of paragraphs written by parents of deaf/HOH children. We called a few people to share the test results, all the while keeping our feelings hidden. We didn't talk much, we just sort of sat on the couch and "existed". We may have known he had "A" hearing loss, but I don't think we expected her to say he couldn't hear anything. I couldn't tell you how we grieved, our when we did it, but we did. I can tell you that while people constantly tried to diminish our loss of our son's hearing, we felt that loss everyday.

Here we are, a year later, on the road to cochlear implants. How blessed are we to live in a world with such technology that is going to allow my son to hear?! While the road has not been easy, by any means. It is what we know. We know NO DIFFERENT. I am now educated about a culture I really had no idea about before AJ was diagnosed. We are learning a new language, sign language. We had always planned on teaching AJ spanish, making him bilingual. Well, now he'll still be bilingual, with english and sign language as his two languages. I know so many acronyms, it could make your head spin :) I know how to read an audiogram, what a booth testing is, what an ABR is, what dBs and frequencies are, how sound is conducted through natural hearing, and how it works with an implant. I can put AJ's hearing aids in with ease. A whole new world in just a year. I wasn't sure how I'd feel when this day came, but in all honestly, I'm ok. Maybe AJ's Dad will post how he's feeling today (hint hint)....

Thursday, November 27, 2008

Thankful for ______________

Remember when you were little and you'd color that picture of turkey, pumpkins, and the pilgrims? Or perhaps you made a turkey from tracing your hands and cutting them out of construction paper, complete with pipe-cleaners and googly eyes? And then there was the infamous I am thankful for _______ worksheet; where what you filled in were usually "Mommy, Daddy, Family, Dog, Kitty, Superman, Barbie...."

Well, here is my worksheet, in a different format: THANKFUL

T-Time. All too often we feel there are not enough hours in a day. Most days I feel like that. I am thankful for the time I have been given and share with my precious son. Over dinner tonight, AJ was enjoying his sweet potatoes and both Jeremy and I commented that he's liked sweet potatoes ever since he was a baby. Wow. Not even a second later my mom said, "Betcha you never thought you'd say that, did you?" She's right. What was really strange was celebrating AJ's 1st "Gotcha Day" in August. We still can't believe he's been with us a whole year +. It feels like ages ago we visited him in Guatemala. What an awesome opportunity to watch AJ, over time, make such wonderful progress and fill my life with so much love, uncertainty, and awe.

H-Home. As I get older (and yes, many of you still tell me quite often I'm young!) I've realized that what seemed to matter to me in my early 20s, don't matter now. I am truly thankful I have a home to come home to, a warm bed to rest my body, food in my cabinet and fridge, and most importantly a forever home for AJ.

A-AJ's team. If ever there were a bunch of women I admire, it is these ladies. They entered my life when I was scared of the unknown and have been there every step of the way. Some days, they are my sanity :) They are bright, educated, friendly, and honest. They understand and feed my love of paper (hehe) and know that we "want to know" whats going on. I know in the next year or so we will be going through some transition with AJ's team, but I will be forever grateful to these ladies who were with us from the beginning of AJ's journey.

N-New Friends. While the world of adoption certainly gave us many great friends (and Guata-Buddies for AJ!), the world of hearing loss has also given us many new friends. I have learned so much from other parents, more than what a book or pamphlet could tell me. Thank you to C's Mom, Drew's Mom, Tammy, and Christian's Mommy, to name a few.

K-Kitties. I know, this seems silly, but I really am thankful for our kitties, Sugar & Marvin. They both make me laugh on a daily basis, which I've heard is therapy in itself. Marvin guards the guest bed while sleeping soundly, complete with his head on the pillow. He only comes out for food, preferably chicken. Sugar, with her few extra pounds, is our social butterfly and cuddle kitty. She's not afraid to swat the dogs if they get in her way (which is quite comical); while other days she'll give the dogs kisses. She also loves to lay on AJ's board book, which if you ask AJ, is not COOL.

F-Fight. Fight for my son to receive the services he needs. Just a year ago AJ was in a foreign country, and I was sitting here, virtually helpless. I know have the right and frankly, duty, to fight for my son. Some days are more successful than others in this department. But the feeling I get when I receive a re-submitted and processed EOB: priceless.I may not make friends with the insurance authorization person, or be the receptionist's favorite person, but AJ is getting what he needs. That is all that matters.

U-Unxpected. Unfamiliar. Unknown. While those who know me know that I want to know everything, right NOW, this is quite a change. I welcome the unexpected because as I look back, it has brought me some wonderful experiences with my son. I have not taken a creep of his for granted, I have not taken a step he has taken for granted. Every accomplishment he makes is remarkable. The unexpected has also helped me learn to take one day at a time. Sometimes I go backwards and get my feather's ruffled, but most of the time, I take it as it comes.

L-Love. I am so thankful I have a man that loves me, and is a terrific Daddy to our son. The way AJ giggles and laughs when he's with his Daddy, does nothing short of melt my heart. I had imagined what it would be like to see my child with his father, but nothing could have prepared me for what I witness every day. Our love is strong, and for that I am truly thankful.

Happy Thanksgiving!!

Tuesday, November 25, 2008

More


Over the past two weeks, AJ has started to push my hands together when I sign "more" to him. He's almost there!! I've been trying to keep my hands further away from him so that when he goes to them to move them in-maybe-just maybe-he'll move his own hands to mid-line.

Somewhere Between Italy & Holland

These days, I think it is safe to say we are somewhere between Italy and Holland....Some of you may recognize this poem from our previous website. Enjoy!

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Monday, November 24, 2008

Chosen

I found this while searching for Holland and found myself bawling.... (I'll post Holland later).

A Well Chosen Mother Has Special Qualities
By Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew.
Forrest, Marjorie, daughter, patron saint, Cecelia.
Rudledge, Carrie, twins, patron saint...Give her Gerard. He is used to profanity."

Finally He passes a name to an angel and says, "Give her a handicapped child."

The angel is curious, "Why this one, God? She is so happy."

"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I do not want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see the child I am going to give her has his own world. She has to make it live in her world, and that is not going to be easy," said God.

"But Lord, I do not even think she believes in You."

God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She does not realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a step ordinary. When her child says 'Mama' for the first time she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly all the things I see - ignorance, cruelty, prejudice; and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

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.

Thursday, November 20, 2008

Crunch Crunch Crunch

AJ has been doing wonders in therapy lately...but we'll concentrate on speech/feeding therapy for this particular post. He had a GRRRRRRRRREAAAAAATTT session yesterday. Below are how the hour played out:

+ When we get into the room, he occassionally whines but calms when we put him on the yoga ball. This time, he walked over to the metal file cabinet (his latest obsession) and began banging on it. We didn't use the ball AT ALL. He calmed himself when getting frustrated, where a month ago he would have pitched a fit, closed his eyes, hyper-extended backward and shut us out.

+ After beating up the cabinet, he noticed the plastic bowl/package of fruit loops cereal on the toddler table and made a bee-line for that. We presented his sippy cup to him and he got himself from standing at the table to kneel on the floor. Since we have been offering him water throughout the day, he's been sitting on our living room floor and drinking his cup. I wanted to make sure his SLP saw his positioning and ok'ed it for us to continue. She was ecstatic about his positioning! He's got so much more trunk support and knows to tip his had back just a smidge to get more out of the cup. He's drinking just like we drink. I'm sorry, repeat that?!!!

+ While drinking, he occassionally checked on his package of fruit loops that he had brought down from the table with him. He handed the package to his SLP and she opened it. He took out a "purple" fruit loop, put it in his mouth and....CRUNCH. He fully bit down into the fruit loop!!! This is the first time he's really bit into anything for his SLP. He continued munching on the fruit loops and had at least 2 more bites during the session.

+ He kept going back to the fruit loops once he was in his high chair. He did become upset when his yogurt was all gone, but he calmed when his SLP gave him a chewy chocolate chip granola bar. She broke it into chunks and he went after it. He has NEVER entertained the idea of a granola bar before, EVER. They usually end up as dog treats on the floor when we attempt them at home :) As part of his lunch here at home today, he ate two granola bars!

+ He continues to use his pointer finger to push pieces of food to the sides of his mouth. This is both good and bad. It is great that he is putting food in the pockets of his mouth and manipulating it around, but as a result he is not using his tongue to do this, like you and I do. AJ takes the easy road. So, we need to continue lateral tongue movement therapy to help strengthen his tongue and cheek muscles.

+ His SLP held AJ while I got my coat on. When I held out my arms for him to come back to me, he glanced at me and turned his head away from me. Humph. I guess I know where I stand. This is actually a good thing. It shows that he knows who his SLP is and has a bond with her.

+ He's still got a bit of a sucking pattern even though we are using a sippy cup that has no "stopper". He has a great lip seal while he drinking, he has leakage when he stops and breaks that seal. We need to continue giving him jaw support while drinking (this is quite a challenge-in case you were wondering). He does have better control when we do his cheek stretches and lip muscle massage before drinking occurs. It seems to wake up his muscles.

All in all, it was a fantastic session! Yeah for progress!!!!

Monday, November 10, 2008

Waiting Room Walking (11/7/08)

Red Rad Dude


LINGO

Have you ever wondered what we mean by AVT, OT, PT, SLP, etc.? There is now a "glossary" of our abbreviations (along with their meanings) on the bottom of the left column of the blog. If we missed something that you have a question about, leave comment!

Ceeeeeeeeelebrate Submission to Insurance, Whoo Hoo!

I received an email today confirming that we were submitted to insurance on Friday, 11/7/08. New ticker has been added!! WHOO HOO!

Saturday, November 8, 2008

FedEx to Reality

AJ's surgery consult went wonderfully yesterday. We went over the surgery with Dr. Wackym. We went in fully prepared and researched so we wouldn't be asking generic questions. We asked about a few of the surgical risks as they pertain to AJ. One of the issues with cochlear implants is damaging any residual hearing. Once you get into the cochlear and the electrode array is placed, any hearing that a patient would have is gone. In AJ's case, this is not an issue.

The surgery typically takes around 2-3 hours. It will be a morning surgery. They will test the implant before the incision is closed to make sure his brain is receiving this information. AJ will being staying overnight at Children's. For some reason, Children's only allows one parent to stay overnight with their child. We were told we could "fight" with the Children's hospital staff about that one. :)

We went over the consent form. As those words came out of Dr. Wackym's mouth and our eyes scrolled down the form, we got goosebumps...chills...butterflies. This is really going to happen. We will not see Dr. Wackym again until the morning of surgery. He is going to be in great hands.

When he came in, he stated that he had spoken to AJ's CI audiologist earlier in the morning. He said that they would be sending a letter out (meaning: submitted to insurance) today. Later in the conversation he repeated himself, adding that a letter would be sent FedEx today, as they know we want to have AJ implanted as soon as possible.

THANK YOU. Thank you for finally hearing us! FedEx is bringing us to reality.

Thursday, November 6, 2008

AJ & New Kids on The Block

The year was 1988. AJ's Mom was introduced to a little band called New Kids on the Block (NKOTB). If you haven't heard, they recently reunited and released a new album and started touring. A big thank you to Uncle Dustin for going on a 'date night' with AJ's Mom to see the New Kids! And to answer your questions: Yes I felt like a kid again and sang every word to every song :)

It is obvious AJ cannot hear music. However, we still turn on music that has loud bass beats or a NASCAR race to help him experience sound. He doesn't always pay attention, believe us! Even though he can't hear, he can feel the vibrations on his hands/body from the tv speakers and if its got lots of bass, it vibrates the tv stand and the floor.

On a whim, I put in my new NKOTB album and put on a song I knew had a lot of bass. What happened next shocked me. And ok, I bawled. What an awesome way to combine a childhood memory with a new memory of our son. He enjoys NKOTB! AJ actually turned his head to the speaker to "listen". I am one proud Mom!! Here is a video of AJ enjoying NKOTB!

NOTE: Stop the music player at the top of the blog before playing the video-the video is LOUD, so adjust your volume!!
video

IFSP Meeting

We had another IFSP meeting today (IFSP: Individual Family Service Plan) with our Waukesha County Birth to Three coordinator and AJ's PT & EET.

It went very well. We seemed to have picked a great time to do it since AJ's made some great progress in the last two weeks. We've been granted continual services for OT, PT, and Early Education through 6/27/09-1 day before his 3rd Birthday.

AJ's transition meeting will be in March. A representative from our school district will be present, as well as our Birth to Three coordinator. We will begin the process of transitioning in to the school system.

Goals we discussed during the IFSP meeting:
OT
More 2-handed play/midline i.e. playing catch
Clapping
Stacking
Putting objects "in"
Work towards pincer grasp
Work toward holding/using crayon and marking paper
PT
Core stability
Increased coordination
Walking on uneven surfaces i.e. from driveway to house
Going up and down stairs
Self-dressing
Potty Training
Early Ed
Communication skills
Coming to Mom or Dad for help/when wanting something
Increased signing

More Waiting

Some of you may have noticed that the ticker for "submitting to insurance" is no longer on the blog....

During AJ's last booth testing yesterday, I kindly asked, "We're submitted to insurance, right?" Fully expecting the answer yes, as its been two weeks since we were last at Children's for CI testing.

No. The answer I received: "Were in process."

Another instance of me feeling the "I'm sorry, what did you say?!" but in a totally different mood.

We have NOT been submitted to insurance. If you are thinking "I thought that was 2 weeks ago," thats what we thought too.

I was told by next week we'd be submitted. I'll receive an email right away so that I can get on the phone and push our insurance company to issue their written denial right away. However, AJ's state insurance is the issue. They have 30-60 days to review the case and issue a pre-authorization or denial. So, say we were submitted 11/15, 60 days would be 1/15/09.
Even 30 days would be 12/15. Surgery will be scheduled after pre-auth is received...and will be scheduled at least 3 weeks out.

What we're trying to say is that it would take a miracle for AJ's surgery to happen this year. AJ's Mom & Dad are very disappointed...and worried as our insurance changes as of the 1st of the year. Odds are we will have to submit to the new insurance company and get their denial as well before surgery can proceed. How long is that going to take?

Please keep our family in your thoughts and prayers as we continue down this ever difficult road to help AJ hear the world around him. We are so tired of waiting and now our hands are absolutely tied. Pray for a miracle for our little Guatemalan miracle....

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....

Tuesday, November 4, 2008

"Nice" Goes a Long Way

It is no secret that getting Speech/Feeding Therapy services for AJ has been extremely difficult. At one point, we were told that he does not have issues and "Mom" should be able to do these things at home. What?! It was so nice of them to diagnose via phone without a medical degree, wasn't it? :)

Last week, we were granted four more sessions (which a month's worth) from our insurance authorization "person"-lets call this person "IAP". We've been given a few visits here, a few there. The IAP requested all of AJ's Speech Therapist's (SLP) notes from September and October. We were also informed that the IAP received a clinic note from AJ's CP doctor, which somehow mentioned AJ does not seem to have feeding issues. It was vague, but enough for the IAP to jump all over it. What his CP doctor meant was that he does not have all of the traditional CP feeding issues. He's eating orally, does not drool excessively, etc. Well, the IAP ran with it.

AJ's SLP suggested that we get the last clinic note from AJ's GI doctor and submit that to the IAP. I requested the last note from the nurse that works with AJ's GI doctor. I received it last Friday. Talk about record time. Attached to the note was a post-it. It read: "Here is the last clinic visit note. If the insurance company still balks and feels a note from Dr. G about the need for therapy would be beneficial, let us know."

Nice goes a LOOOOOOOOOOOONNNNNNNNGGGGGG WAY. I immediately faxed the note to AJ's SLP and got her in touch with the GI nurse. As of today, a letter is being drafted by Dr. G and will be sent to me by the end of the week.

NICE is NICE, isn't it? :)

Monday, November 3, 2008

Patience

So AJ has been awake since 730am. It is now 5:13pm. That's right, no nap today. He is cranky and ornary, as any 2 year old would be when choosing to fight naptime. But today is a day where I wish it was easier to communicate with AJ. Although these days don't come as often as they used to, when they do pop up, they hit hard.

I warmed AJ's milk cup as usual and gave it to him in his booster chair. Not ten seconds into drinking, he drops the cup, resulting in sweet vanilla milk flying everywhere and pooling on his tray. As I rush to soak up what I can from his tray and rescue his cup to refill it, AJ begins screaming. I repeatedly sign "Wait! Wait! Wait! Mommy make you more! Calm down!" My son continues to screams and then shuts his eyeballs. UGH! Anyone who has a child that is deaf or hard of hearing knows that somehow they just "KNOW" if they shut their eyes, they can tune the world out. It is extremely hard to get his attention. Of course being tired, thirsty, and hungry don't make it any better. Add to all that the fact that in his eyes, he thinks I took his cup away. Again, I frantically sign to my son. Nothing soothes him. Nothing helped him-until I brought a fresh cup of milk and tapped it on his tray. Since his eyes were still closed, he was still tuning me out until he felt the tapping. His only form of communicating is crying when something is wrong. It is a constant guessing game.

Having a deaf child requires lots of patience. I am not always the best at having said patience, but I certainly try. My voice cannot soothe him. He cannot tell by my tone of voice if the situation is bad or good. I can't just SAY "It's ok honey." He can't hear us trying to comfort him. Hopefully soon, he will...

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