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!

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