Wednesday, December 31, 2008

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!

Tuesday, December 30, 2008

A Magical Christmas

{Be sure to disable the playlist above before viewing video}


Our Christmas this year was truly magical....


On Christmas Eve morning we woke up to heavy, big, fluffy snow flakes. Lots of them! The dogs had a blast tearin' through the snow while AJ was still sleeping. Thankfully the snow stopped mid-afternoon. We visited good friends of my family that evening. When we undressed AJ, someone asked, where's his other hearing aid? Translation: PANIC. We knew he had both of them in when I walked in the house. After a half hour of AJ's Mom & Dad panicking and swearing & everyone (graciously) searching for it...we found it. In the garbage. Ironic? The conversation then turned to, "So what can he hear with them." Answer: Nothing. "Well then why does he have to wear them?" Answer: It stimulates the auditory nerve. Translation: This is usually where we lose 95% of those people who ask us questions about AJ's deafness and they give us what we call the long "Ohhhhhhhhhhhhhh" and then change the subject or move on. Alrighty then.

AJ enjoyed the fan in the kitchen and felt strongly about not going into the living room. On the flip side, my child would walk with whomever offered a hand and if you picked him up to watch the fan-total bonus! He was also quick to find the basement stairs. On the way home, Jer and I had our discussion regular discussion about AJ's hearing aids, etc. Here we are, freaking out about losing something that in all honesty-doesn't help him. By the way, did you know that Brandy Slush with 7Up is really good? :)

We arrived home just in time to dress AJ in his special Christmas pjs and put out the cookies and milk for Santa...and the carrots for the reindeer. We put him to bed and plopped on the couch to chat. There is just something magical about knowing your child is sleeping and what awaits them in the morning....

We woke up Christmas morning to crisp, cool air and the bright sun. We had breakfast while listening to the Walt Disney Christmas Parade. We took our time opening gifts and much to our amazement, AJ participated. We and Santa had the same idea...he wrapped all of AJ's gifts in bright red paper with snowflakes. AJ's Dad & I wrapped ours in metallic red paper, to make sure AJ would spot them. He picked up his gifts, tossed them around, ripped the paper, and was truly interested in what the items were. For a brief moment in our lives, the focus was not AJ's deafness. The developmental progress he has made over the last year was right there in front of us. Last year, I don't remember much of Christmas, except for being in a daze and putting on a smile. I do remember us being very down, knowing he wasn't going to "get it." This year, he still didn't get "IT"...if you are referring to baby Jesus, reindeer, Santa, and candy canes. But we got IT. Watching AJ open his gifts, play with his toys, interact with us and the dogs...was truly magical. Even though we multi-tasked by watching him & doing the video/pics, we both soaked everything in.

Later on in the day we went to my Mom's. AJ was a little upset Great Grandma Annie's TV was blocked by presents. He loves the "snow" channel. :) He decided not to nap that afternoon so by the end of presents he was done for. He loved this hologram paper my Mom had wrapped one of his gifts in...and then came the ride-on airplane. It's propellar lights up. Enough said. At 7pm we drove home with one tired little elf in the backseat. He didn't even wake when I layed him in his crib and changed him into his pjs. (He slept until 9am the next morning....)

Once AJ was in bed, we popped in a movie and started taking things out of boxes, starting a laundry pile. As always, AJ had PT then very next day...so we sorta needed a floor to work on. What a truly magical Christmas. It was small, quiet, and very enjoyable. In the midst of all the chaos of AJ's world, it was nice to step back and breathe. We can't wait for Christmas next year...when (hopefully) our little man will hear the reindeer on the roof....

Friday, December 19, 2008

Betty Brinn ROCKS!

AJ's EET and I decided to take him to the Betty Brinn Children's Museum in downtown Milwaukee.

It was AWESOME!

As soon as we walked in AJ's eyes started wandering and he decided to walk with his EET over to what else-a red wall. (Red is the color he sees best-and that we've deemed his favorite)

We spent more of our time HERE in the toddler area-Betty's Busy Backyard. AJ was go go go the whole time we were there.
He enjoyed the sand table, the metal tree mushrooms, and most of all the tunnel! His face was priceless-the moment he figured out I was on the other side...turned around and saw his EET where he had started...he laughed so hard. He though he was pretty cool!

They also had a log that you could crawl through, with a detour to the left (a branch). Guess who took the detour....:) After about an hour, he was done, so we walked around and toured the rest of the museum. It is for ages 0-10. I wanted to play! We will have a membership soon and will be visiting quite frequently-since AJ liked it so much.

This was another awesome language opportunity. I love having his EET around. One can handle while the other signs-which is sometimes necessary with AJ. She's just awesome. I highly recommend this children's museum...Betty Brinn ROCKS!

Below are some pictures:

He really liked these flowers


Tunnel Time!


Check me OUT!


Detour!


Zonked out on the ride home

Thursday, December 18, 2008

Long Time, No Post

Hello Everyone!

It's been over a week since we posted...we've been super busy around here!

Our biggest snow storm of the season...wait. I shouldn't say that. We live in Wisconsin. Our biggest storm yet hit us today. Our trusty old snowblower worked like a charm and we are finally dug out...but still hibernating. AJ enjoyed having his Daddy home today. Time to grab a cup of hot cocoa and update the blog!

Did I mention its still snowing? LET IT SNOW!

Wednesday, December 17, 2008

Loose Hips, Sink AJ's

Over the last week or so, AJ has had a huge growth spurt. He's taller, I'm pretty sure that there has been some development growth & brain growth...and oh yes, those teeth are coming through again. We are convinced this child has extra teeth :(

AJ suddenly stopped walking. If we facilitated walking, he tried to walk with only the top half of his body. Doesn't work so well! His left hand began to fist/clench again. Bad habits/self-stimulation started resurfacing. He's stiff. His hamstrings are ridiculously tight. Translation: He's growing.

His PT came a day later and said, "AJ lost his hips. He has no idea where his hips are." After she told me it would probably last a week or so, I asked if this was normal. She answered that most kids tend to be a bit uncoordinated when they've had a growth spurt. She gave me the best analogy: "For AJ, an inch of growth is like walking in 4-inch heels when you haven't done it in two years. It takes a while to get used them and walk properly, doesn't it?!"

Our homework: Knock him over from side to side while he's crawling.

Rephrase: Gently push him into side-sitting from crawling position so that he has to come back up-using his hips.

She was right, he started standing back up and walking again earlier this week. He's even crawling up and learning to walk down our make-shift stairs made out of his step-stool, a diaper box, and the couch!

Whew!

Big Boy Chair

We and AJ's OT have been discussing moving him to his original highchair. Before AJ came home from Guatemala, we had asked Grandpa Tom to make a highchair for AJ. It is a beautiful chair! But due to AJ's lack of trunk support, tiny size, muscle weakness, and a whole bunch of other issues, we weren't able to use it when he came home. We tried, believe me, we tried. But we needed to put AJ in a chair that fit to his body size and gave him "gigundo" support.

Earlier this week we brought up his highchair (minus the tray). Since he no longer needs to be reclined while drinking, and in effort to have him be at the table instead of things on his tray, we decided to try it out. What a difference from a year ago until now. He looks like such a big boy. He enjoys lifting up his sign language placemat and biting it occassionally. Just watching him drink his cup while sitting upright is a marvel. He has gained so much trunk support! His OT still suggested making some adaptations to the chair to further help him, so we'll ask Grandpa Tom the best way to do that.

During AJ's OT session this week, we attempted coloring. It didn't go well for 2 reasons: 1) He was tired 2) Coloring is not something we do on a regular basis. I know, I'm such a bad mom. We've colored, but he really hasn't gotten the concept yet. AJ thinks that the highchair is for eating ONLY. Lets make this reason #3. So, one of our OT goals is to have him "play" in his highchair. Playdoh, Shaving Cream, Coloring, Painting, etc.

Here are a few pictures:

Grandpa Tom starting the chair (with Sadie's help-dog)


Rough Finished Product


AJ's 1st time in his highchair-September 2007


AJ in his highchair this week

Shake Shake Shake

This past weekend my mom came over to bake cookies. AJ served as taste-tester. He gave the spritz cookies his thumbs up. Ok, he just ate them and giggled. He took a nice long nap during the afternoon. I had the afternoon to myself. In my own kitchen. I was on a baking frenzy. I'm still not sure where that came from. I will say that it was very theraputic and I was glad to have both ovens to work with.

After dinner Jer and I had AJ decorate the sugar cookies. Playfully referred to as our "Under The Sea" sugar cookies. Little did I know, AJ's Mommy does not own one cookie cutter. Thanks to AJ's "Playdough Bucket of Fun" we used plastic cutters to create starfish, dolphins, fish, lobsters, and more. We even have a few giraffes, alligators, dogs, and cats. OH MY.

Decorating the cookies created an awesome language opportunity. AJ obliged and shook the sprinkle can a few times, but was more interested in eating the can & sticking his finger in the dough. He had fun. FYI: Double-tailed dolphins look really strange when they come out of the oven :)

Below is the video & pictures (be sure to disable the playlist above before playing the video). It is a bit dark-sorry! This is my first video with captions-I'm so proud!!






Monday, December 8, 2008

Congratulations AJ's Dad, RN CDE

AJ's Dad finally received his results from the NBCDE exam he took October 25th.

HE PASSED!!!

Jeremy is now a CDE, Certified Diabetic Educator.

Congratulations, hon, I am so very proud of you...and AJ is proud of you too!!

"Good Job Buddy"

This phrase is something we hear ourselves saying quite often these days....

Here is a quick list of gains AJ's made in the last few days:

+ Imitated Mommy making the "ooo" shape with her mouth-twice

+ Walked from the chaise of our couch to the tv (10 feet) without falling

+ Looked at Mommy for help six times in a row when wanting his frog toy turned on again

+ After Mommy signs "more", she puts her hands on her lap. AJ picks up one of Mommy's hands, then the other, and then brings them up and pushes them together

+ Looks down at his hand immediately after or during someone signing to him

+ Stands up on his own from the floor with ease...and then walks

+ Free stands for over 2 minutes

+ INCREASED vocalizations A LOT!

+ Stands up, walks, falls or squats to lower himself down to the floor, the gets up and repeats

+ Getting better at pushing buttons to turn things on

+ Less temper tantrums when vacuum stops/fridge toy stops/etc. Understands signs for "bye bye, all done" when Mommy or Daddy stops/puts away a toy

+ Sucessfully finds 2-3 toys in box of foam peanuts

+ Put animals "IN" container with his OT today

+ Removed all 12 pieces of chunky puzzle with pegs with his OT today

+ Puts arms out/up for putting shirt on

+ Beginning to understand offering a leg for putting pants on

+ Puts feet up for socks when laying down

+ Consistently pulls shirt off or on when around his neck, as appropriate

+ Increased lateralization of tongue toward left side of mouth

+ Takes/eats dry cereal every day as his "appetizer" before breakfast

+ Ate all three meals in one day with a spoon or fork (no paws)

+ Learning to throw

+ Tolerating hand-taping for 10 minutes

+ Able to corral a medium ball when rolled to him (comes before catching)

+ Grabs the back of the dogs leg so he "stays" while wagging his tail for AJ's enjoyment

+ Climbs into the tub with help of Mommy or Daddy and step-stool

+ Heard drum & cowbell upon first presentation during last EE session

+ Watching the door & the person when someone comes in our goes out

+ Completely comfortable in speech therapy room

Detour: Winter Wonderland Ahead

This weekend was the annual Winter Wonderland Party for the Center for the Deaf & Hard of Hearing (CDHH). AJ receives early-education services from CDHH. His EET (refer to Blog LINGO-scroll down-its on the left bottom) comes to our home once a week. We were looking forward to the party since there would be a signing snowman, cookie decorating, face-painting, coloring, story-time (signed), and music-time. I was looking to the signing snowman the most.

AJ woke up early which threw off his whole napping schedule. We picked up Grandma Cheri and arrived mid-party. By the time we got there, we discovered the signing snowman was gone. The cookie decorating table was taken down just as we settled in. AJ does not color (yet). Face-painting + child with sensory issues with his face/head especially = disaster. We didn't even pursue that. We ventured into the play area where they had an igloo (crawl-through tube), a ball pit, slides, etc. By the time we got in there the sign that said "Parents Please Supervise Your Children" had gone out the window and the kids were hyper off of cookies & hot chocolate. Understandable, but not so good for AJ. Jeremy and I both looked at each other and knew if we put him down he would get trampled. Literally.

Instead, we went back to our table. I saw a baby, probably around a year of age, watching his Mommy sign to him and I could tell he "got it." I had a huge cloud of guilt suddenly hover over me. Why does my son not understand me? I'm not doing enough. He should be understanding more signs. What do I need to do to make this happen? I know what everyone will say. You can only do so much, there are only so many hours in a day, you're doing a great job. He's got other things going on in addition to the hearing loss. I know all these things. But I am also incredibly aware of the things we need to do to keep him progressing. Any parent that has a special needs child knows that plateaus-SUCK.

Four helpings of pistachio salad for AJ later, we left the party.

Bummed.

Despite our hardest efforts to NOT have it be this way, this time of year is a little bittersweet. While we are having a ball shopping for AJ this year, this season is still hard for us. Last year, we had hope in thinking "next year, he'll get it." "Next year, he'll be able to participate." Don't get me wrong...I am thrilled and amazed that my son has made such tremendous progress going from 0-15 months developmentally in a year and a half. I am thrilled he is responding to more signs and making daily progress. But, we took him to an event geared for children/families with hearing loss and yet he still didn't benefit from it. We are going to take him to see Santa soon. We were not avoiding Santa this year, but though the signing snowman would be more appropriate and special. Of course it bothers me he can't hear Santa's sleigh bells, but I don't see this visit to Santa being as heartbreaking as the first. Right now, its the rest of the stuff that bothers us. Sometimes we don't feel like "doing IT", whatever "it" may be, simply because AJ doesn't "get it". All of this is hard only on us, as parents, at this point. I hope we snap out of this funk sooner than later.

On a positive note:
We visited with AJ's EET for a while at the party. We also ran into the instructor of the sign classes Grandma Cheri & I took. Well call her "T". She is deaf and is one of the teachers for the toddler group we so desperately want to get AJ into. She is the cutest & most ecstatic pregnant woman I've ever met, which is such a breath of fresh air! She can't wait to be a Mommy!! "T" and I communicated in sign. I understood everything she said, which is not a feat, but she understood me too. I felt very proud. It was great to see so many people using a common language-other than English.

We found a new tree-as ours was older than old-and was past its prime. We decided to stick with artificial, as it is more cost-effective. We made our tree lights "blink" by using the twinkle bulbs. Grandma Cheri had told us a few weeks back that he enjoyed Great Grandma's tree when she turned the lights on/off.

So, we know what "doesn't benefit AJ" (yet). Jeremy and I brainstormed last night to figure out what we could do that AJ would enjoy. We are going to take him to Candy Cane Lane and to the light display at the Country Inn & Springs Hotel in Waukesha. We have heard that light display is amazing. In addition, Grandma Cheri and I will be making Christmas cookies here soon and we'll have AJ "help". Extra bonus: He's only 1 room away from the bathtub for easy cleanup!

I am also constructing AJ's 1st experience book. A few months ago AJ's EET & I created an "All About Me" book for AJ. We had taken pictures of me dressing AJ & a few of his favorite toys. We mounted them on cardstock, wrote captions (i.e. "AJ stands up, he's all dressed"), laminated each sheet, punched holes in them and put them all together with silver clip rings. This is sort of the same idea. I am working on a winter/holiday book for him. Soon we will be reading & signing with the book each day. Hopefully I can keep this going and do more experience books for him. (Did I mention I'm still working on his lifebook-first visit pages-STILL) I will post pictures as soon as I am finished with it.

Snapping out of it and taking the detour ahead? Workin' on it.

Saturday, December 6, 2008

DENIAL

Today, we received the official, written copy of our primary insurance company's DENIAL of AJ's cochlear implant surgery.

One denial down, one approval to go!

Thursday, December 4, 2008

Rush Limbaugh (& His Cochlear Implant) with Barbara Walters

Rush Limbaugh was just on as one of Barbara Walter's 10 Most Fascinating People of 2008. It had slipped my mind that he had a cochlear implant. I went to his site and found a "timeline" of sorts of his CI journey. You can find it HERE. I'm sure further digging would uncover the actual broadcasts or transcripts. Barbara found him fascinating for his show and his incredible income...but we find him fascinating for a different reason.

Wednesday, December 3, 2008

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 :)

Tuesday, December 2, 2008

Attention All Shoppers

Note: I could not find an appopriate Christmas song for this post. But I did find a hilarious clip of Abbott & Costello. Enjoy!

So last year, let me be completely honest and say that Christmas shopping for AJ - SUCKED. No other way to describe it. We had just gotten the news about his hearing loss and cerebral palsy. Still, I tromped into Walmart and headed for the toy section. I have never been so horrified. Horrified that everything, I MEAN everything, made NOISE. I eventually chose a set of wooden blocks and a pop-up toy. As I left the store, I bawled. I had no idea what to get my baby. What do you get a baby who can't hear? I was thrilled when he received Signing Time DVDs, signing flashcards, and a signing match game from some of our family.

Well, this year, I'm EXCITED. That's right, excited to shop for AJ!! His therapists have changed our mode of thinking...in a good way. Now I look at a toy and immediately analyze as to what skill(s) each toy addresses (ie auditory, gross motor). I am so very relieved that we are now armed with knowledge, which makes this time of year a bit easier for both of us....

ToysRUs has the right idea. I didn't know about this until I read a post from last year on Christian's Mommy's Blog. I wasn't sure if they were doing it again this year, but sure enough, THEY ARE! ToysRUs has a catalog of toys for Differently Abled Kids. You can find it HERE. They organize the toys by skill, telling you what toy they recommend that addresses mobility vs. a toy that would help fine motor skills. I am SOOOOOOOOO excited!! They have partnered with Lekotek and Able Play, which are both awesome!

Off to ToysRUs I go!

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!!

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...

Thursday, October 30, 2008

Amazing

Just thought to take a moment and jot down AJ's gains in the last week or so:

+ Walking from object to object (example: box to ledge to couch) with a few steps between each object

+ Looked at OT for help when his fridge toy turned off-HUGE COMMUNICATION GAIN

+ Understands the sign for bath time/sit down and wait/Mommy's making your (insert food name)/Find It!/You Got It/Come Here

+ Actively participating in 2-person play
+ Responded to noisemaker then played with it/figure out how to make it "go"

+ Stands up from the floor all on his own

+ Pulls shirt down from his forehead, takes off socks, tries to undress himself-THIS IS GOOD

+ Tried to make wind-up toy repeat its action by banging it on the table

+ Beginning to understand the concept of up and down

+ Discovered "catch me game": We throw toy-he walks to it-picks up toy-turns around-crawls toward us-tries to crawl around and anticipates you catching him-once you catch him-laughs hysterically-we throw toy again and repeat-even figured out he could peak at us from around a corner

AJ is one amazing little boy....

Duplicate Services

A few months ago we and AJ's early education teacher (EET) began talking about getting AJ into one of the toddler groups at CDHH (Center for the Deaf & Hard of Hearing). They have two groups: Total Communication and Auditory Oral. I took him to observe the group...let's just say it didn't go so well. We agreed that we'd do another informal evaluation of his skills at our next session. We did so and determined he wasn't quite ready for the group just yet.

Over the last few weeks, AJ's skills have just exploded. Since AJ's Grandma Cheri and I are taking a sign language class at CDHH once a week, I've been able to bring him early and play in the toddler group room/observation room so he becomes acclimated to a new space. After about 15 minutes, I take him out to the parking lot and AJ's Dad takes him home while I stay for sign class. AJ has adjusted well and doesn't mind being in the rooms at all-he even plays.

At first we were not so sure about the group...while it would be great thing for him...it is costly. AJ's EET explained that CDHH is working with the Birth to Three program to cover the toddler groups. Our eyes opened a bit more, and we thought just maybe the group would be a possiblity.

Today, his EET informed me that even if the parents pay for the groups themselves, Birth to Three will most likely stop providing an EET for AJ. They will say he's receiving duplicate services. Wait a minute...even if we pay for it? So if I take him to a library group or playdate, you're going to tell me he can't have Bto3 services because its a duplicate service? Hello, my child is deaf. He can't hear library time...he needs to be around his peers, around other children that sign. Ugh! Sometimes, this merry-go-round, for lack of a better word, SUCKS. AJ's EET is setting up a meeting to discuss this issue, again, with Birth to Three. Let's hope the meeting goes well...

Sunday, October 26, 2008

Bonfire & Spactula


Last night we went over to AJ's Auntie Sally & Uncle Mark's house for a Halloween Gathering. It was lots of fun! It was also AJ's first bonfire, so we had to take pictures of that....To keep him occupied, he ended up with Auntie' Sally's spactula. LOL He gracefully wacked both Mommy and Daddy, and Grandma Cheri with it several times. Who needs toys? Give a kid a kitchen utensil and he's good to go! Uncle Mark had their dog Junior pose in the picture of AJ & AJ's Dad by the fire, and somehow, he made his Halloween debut with "glowing eyes" LOL :)

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.

Thursday, October 23, 2008

Gains, Goals, & Growing Up

One of the skills we have been working on with AJ is going from the floor sit-to-stand on his own. Meaning, not holding onto anything. Well, he's got it! He just won't do it for his physical therapist....He's done it several times here at home. Yesterday, after his booth testing, we spent some time in his regular speech/feeding therapy room. I was facing the opposite direction, but his Speech Therapist saw him stand up from the floor on his own and walk over to the table!

Some people have been surprised with my answer when I say, "No, he's not walking quite yet." He IS walking, he's just not running around the house. Walking for most children is a fun skill. Once they get it, they get it and they're off and running. Because AJ has cerebral palsy, walking is quite a task for AJ. It requires balance, coordiation, and strength. None of which are his strongest skills. Now that he is standing/walking at everything and getting up to stand on his own, our hope (along with his physical therapist) is that he will just take off. We must continue to have him WALK WALK WALK.

Goals. Hmmm. I'm not so good at answering this question. Early on in AJ's therapy treatment, we were told not to get too hung up on what he "should" be doing, as his chronlogical age doesn't really mean jack at this point. It shows us how behind he is, but other than that, its useless. Because of that, I think I stopped worrying about what he wasn't doing (finally). Today, his PT asked me to think about goals for our next IFSP meeting. Huh? Walking has been on the board for so long, I hadn't even thought of what should come next. He's got so much going on at the same time, sometimes it becomes hard to focus on just one area. So think I shall do, and discuss with AJ's Dad. Some of the goals his PT and I discussed:
*crawling up and down stairs
*climbing out of his carseat on his own
*climbing onto stepstool to wash his hands
*walking up to the house (up porch step)
*playing ball
*potty training

It wasn't until the last goal was mentioned that I was stunned. Our little man is growing up. I remember timidly asking his PT if AJ could be potty trained a few months after his CP diagnosis. I was surprised she said YES! What surprised me even further was she suggested getting a potty now and making it a novelty. AJ's Mommy isn't sure she's ready for a potty. This growing up thing is hard. Today is one of those days where I'm looking at him and saying, WOW...You are a miracle aren't you AJ? So potty shopping today? No. But maybe tomorrow...:)

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!

Monday, October 20, 2008

Walkin'

What Would You Like AJ To Hear?

Below, AJ's Dad & I have made a list of things we are excited that AJ will hear once he has his cochlear implant. What would you like AJ to hear? Leave us a comment, lets see how big our list can get!!!

Mommy & Daddy's voices
Mommy & Daddy saying "I Love You"
His name-AJ
His own laugh/giggle
Our dogs bark
Sound of footsteps
Rain
Music
Elmo/Sesame Street
Knocking at the Door
Water being splashed around
All of his toys that make noise
The sound of the playground
Train
Wind
The waves from the water on the lake
The crowd at a football/baseball game
His Mommy sing to him

Thursday, October 16, 2008

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 :)

No vacation. But...

AJ's Dad and I were talking during dinner last night. My personal opinion, AJ would haul off and punch me in the face if he could. I imagine him saying, "Mom, I'm done! No more doctor's offices, no more appointments, I'm tired." Thats when AJ's Dad said, "You know, he never gets a vacation." We as adults do (although we all want more!), but he doesn't. The last few weeks have been absolutely crazy, with double appointments on most days. So no, no vacation for our little man, but we try and give him down time when we can. Trouble is, give him too much downtime, his muscles stiffen, he becomes rigid, and old patterns return. We can't win :)

On the upside, he's had quite a few gains this past week & this week, so we thought we'd share:

  • Pulled a toy with string attached to retrieve it
  • Looked at mom when toy stopped/made that eye contact to say "Help me, make it go" THIS IS A HUGE COMMUNICATION GAIN!
  • Comes to Mom or Dad 7/10 trials when he wants something instead of crying/tantrum
  • Going from sit to stand on his own-on the changing table :)
  • Standing and walking along everything
  • Making many different sounds that we've never heard before, lots of longer sounds
  • Made his lips vibrate (like raspberries) while making a sound
  • Allowed his speech therapist to do all cheek stretches, lip muscle strengthening, and touch his face all over!
  • Vocalizes rather loudly when he stares at the office light from his changing table
  • Drinking whole milk/cream only (no CIB!) for 1 week now.
  • Drinking out of new/bigger/faster-flow sippy cup
  • Great lateral tongue movement to the left side of his mouth with the help of "Pop Rocks"
  • Calmed in a new place within 2 minutes, then the next day 30 seconds and played on his own on the floor
  • Has enough trunk support to kneel on the yoga ball

In addition, we received Dr. Bob's official psychological report yesterday. And I quote, "AJ is a good psychological candidate for a cochlear implant." Overall, AJ operates at around a 14-16 month level. He is 27 months. That means, in the 14 months we've had him home, he's caught up over a year. That is EXCELLENT. Way to go AJ!

Music to our ears...

Tuesday, October 14, 2008

Pink Shirt

For some reason, three things have always stood out in my mind about AJ's birthmother.

I remember getting the referral pictures and noticing a woman in a pink shirt with AJ. At the time, I didn't put two and two together (mind you I was running through the house trying to answer the phone!). Something prompted me to ask our agency who the woman was and she was indeed, AJ's birthmother. There are two pictures of her with him. One bothers me. It is picture of his birthmother handing him over to one of the nineras (orphange caregivers). It still breaks my heart. She is a beautiful woman. Long, shiny, black hair and the biggest dark eyes I've ever seen. Her face says a thousand silent words to me.

When AJ's referral packet came in the mail I noticed her birthday was in October. I remember that day. It was a few weeks after we received AJ's referral and I was bawling. For her. Here this woman had given us the biggest blessing and she was celebrating yet another birthday without her son. I don't have enough space to list all the emotions that I was feeling on that day. I've heard many adoptive mother's celebrate their children's birthmother the day before or on Mother's Day in May. I decided that I would wear a pink shirt on AJ's birthmother's birthday and honor that day instead.

She and I are the same age. Our different worlds baffled and continue to baffle me. How can a young woman in a third-world country be faced with such a decision, while a young woman in this country can pursue international adoption? I will forever be grateful to AJ's birthmother. She made an incredible decision that changed my life-FOREVER. I know she knows who we are, what we look like (via pictures and our attorneys information) and where we live. She knows AJ is ok. That is something I take great pride in. On the days where all of this is too much to bear, I think of AJ's birthmom. I am raising a son. Our son, and her son. I am forever grateful to her for giving me the chance to be mom. She knew she could not provide for him. I hope she finds comfort that he is so loved and growing up as he should. Her birthday was a few days ago...and a pink shirt I wore as I took AJ to therapy.

Many of you have seen AJ's lifebook-and found the poem about a birthmother and adoptive mother very touching. I have posted it below...

Once there were two women who never knew each other.
One you do not remember, the other you call Mother.
Two different lives shaped to make you one.

One became your guiding star, the other became your sun.
The first one gave you life, and the second taught you to live it.

The first gave you a need for love.
The second was there to give it.
One gave you a nationality. The other gave you a name.

One gave you a talent. The other gave you aim.
One gave you emotions. The other calmed your fears.

One saw your first sweet smile. The other dried your tears.
One sought for you a home that she could not provide.

The other prayed for a child and her hope was not denied.
And now you ask me, through your tears,the age-old question unanswered through the years.

Heredity or environment, which are you a product of?
Neither, my darling. Neither.
Just two different kinds of Love.
© Author Unknown

Monday, October 13, 2008

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...

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