Passion in Life

AJ's Grandpa Doug

For those of you that don't know, AJ's Dad is very active in the world of Diabetes. AJ's Dad was diagnosed with juvenile diabetes (Type 1) at age 10. In addition, AJ's Grandpa Doug also had Type 1 from age 14 on. Sadly, AJ's Grandpa Doug passed away in 2000 from a stroke and several other complications due to uncontrolled diabetes.

For those reasons, AJ's Dad has made the world of diabetes his passion.

At age 16, AJ's Dad was admitted to Columbia Hospital with the flu. Due to a busy flu season, and no beds available at Children's Hospital, he was sent to Columbia. At the time there were no pediatric endocrinologists available in the area. AJ's Dad was met at the door by Dr. J. AJ's Dad was very stubborn (his words not AJ's Mom's!) and refused to go back to a pediatric endocrinologist. He asked Dr. J if he would be his doctor. Dr. J stated that he did not see patients under the age of 18, but if AJ's Dad would be compliant and do what Dr. J asked, he would take him on as his first adolescent patient. AJ's Dad agreed. As AJ's Dad and Dr. J's relationship grew, AJ's Dad said, "One day I'm going to come work for you."

12 years later, he did just that. AJ's Dad currently works as a Registered Nurse-Diabetic Educator for Dr. J. He educates newly diagnosed patients, long-time patients, and everyone inbetween. Patients listen to him because he "knows" what it is like to live with diabetes. AJ's Dad is also a certified insulin pump trainer for all of the major insulin pumps. He also wears a pump.

Recently, Nick, one of the members of the popular music group the Jonas Brothers learned he has Type 1 Diabetes. He was featured in the magazine Diabetes Forecast. He wrote a song about his diagnosis and the days following entitled "A Little Bit Longer." AJ's Dad is a big fan of this song and wanted to share it with everyone. You may not like the music, but AJ's Dad's is asking you to listen to the lyrics. The last verse says:

So I'll wait 'til kingdom come.
All the highs and lows are gone.
A little bit longer and I'll be fine.
I'll be...fine.

AJ's Dad says hopefully a cure won't take that long....You can listen to the song on our playlist (top of our blog). Please also check out the Diabetes Links. Leave a comment if you have questions or comments for AJ's Dad regarding the world of Diabetes.

"Dr. Bob"

Fears Relieved....

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

Dr. Bob asked us:

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

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

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

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

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

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

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

What is a Cochlear Implant?

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

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

Here is what we know as parents:

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

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

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

Any questions/comments? Leave a comment for us.

86% and then some...

Today AJ had his follow-up with Dr. G, his GI specialist. To say we were nervous and wanted to avoid going are understatements. I was so nervous when he was being weighed I felt sick to my stomach.

Current Weight: 19lbs 7.6oz

Total Gain since 7/9/08: 13.5 oz

As we waited for his specialist in the exam room, little tears began to trickle down my face as I hugged my little man. They soon stopped, as I realized, as I had so many appointments before, that Dr. G may not be happy with his gain.

Dr. G said he was happy with the gain. What?! That is the first time I've ever heard that. AJ's birthweight at 3 lbs 8oz was "ok" size for an infant born around 8 weeks premature (that is his estimate). GI sort of gages the growth based a child's birth size/etc when premature. He is content with his progress so far. AJ is 86% of his ideal weight. Meaning, he is considered a tad under-nourished. He was quick to reassure me that it is nothing we are doing wrong, it is just where AJ is. The goal is to get him to 90% of his ideal weight. That is only 4% more than he is now, so that is a very realistic goal that AJ will accomplish naturally as he continues to grow.

Given that we have tested for parasites, abnormal calories absorption, and celiac disease, I was at a loss. What else could be wrong? Over the last few months, AJ's Dad and I kept saying, "AJ's just small." "We've tested for all things possible, he was a premie, he has cerebral palsy, his birthmother was 4'10", Guatemalans are small in general." We had no desire to have an endoscopy done, or upper/lower GIs, and most certainly not a G-tube.

*Note: Children with cerebral palsy burn twice as many calories as a "typical"child does. So while AJ's walking is truly a miracle, as was his crawling, pulling up, etc., in the back of our minds we were seriously worried about how it would affect his weight.

Dr. G said no scope, no GIs, no nothin'. Music to our ears. He's just small and is growing on his own chart. He's closer to the 3% on the normal boys 0-36 month growth chart, but we are not putting too much merit toward that chart, as AJ's chart for his own weight vs. height is what we are focusing on.

We are now able to give him water. What? You weren't giving AJ water? No, we weren't. When we began seeing Dr. G & his staff, we were told not to give him water or juice, as those are "empty calories". AJ has an intake of 1500 calories a day. For a long time, most of his calories were coming from whole milk mixed with carnation instant breakfast (CIB). In the last few months they have added heavy cream to the mix. His pediatrician recent expressed concern about his fluoride intake, so we asked GI if we could give him water. I now need to take a look at our house records to see if there is fluoride in our well. If not, then I'll have to buy the nursery water with added fluoride from the store.

Here is a summary of our care plan:

• 1500 calories/day
• Continue with high-calorie diet (add oil/butter to everything)
• Continue with 1 complete multi-vitamin per day
• Change liquid intake to either 7oz whole milk + 1 oz heavy cream OR
  7oz milk + 1 packet CIB 3x/day
• Goal of 24-26oz liquid daily
• Give water between meals, avoiding 1/2-1 hour before meals
• Follow-up 3 months

To celebrate that GI is finally accepting his gain, and that we won't be stressing over every bite/meal he eats, I picked up lunch on the way home. I thought only one place was appropriate...McDonalds.

Camo Pirate

AJ saw his new ophthalmologist, Dr. P, yesterday. The appointment went well. It was decided that AJ will have the surgery to correct his esotropia (crossing of the eyes). Dr. P wants to wait until after his cochlear implant surgery. In the meantime, we must continue to patch. We alternate (Monday left eye, Tuesday right eye, etc.) eyes, patching for a minimum of 1 hour/day. We need to continue the patching so that AJ does not lose his vision in either eye.

Dr. P also shared that although AJ can look at us "straight on" he does not use both of his eyes together. There are four muscles around each eye. One on the top, on on the bottom, and one on each side. The muscles towards his nose, on both eyes, pull in too much. Therefore, he's only able to use one eye at a time.

We also found out that he is near-sided and has a slight stigmatism. After the surgery, he will wear glasses to force his eyes to focus. The surgery is a relatively simple procedure, and is done in Day Surgery at Children's. First the ears, then the eyes...

Above are pictures of our camo pirate. I realized no one except for AJ's Dad and I have ever seen him with his cool patches on!

Worlds, Choices, Difference

Wow.

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

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

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

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

Speech Banana

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

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

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

Words & Phrases

Today we made an official list of the words and phrases AJ recongnizes being signed to him. While he is still not signing on his own, it is amazing that after only 9 months of exposure to "A" language (sign), he's understanding so many words. He's also loves to watch you talk. He gets quite a kick out of his Early Education Teacher when she signs while she's talking. Go AJ!

Words
No Eat More Drink Cup Milk Juice Banana Noodles Apple Play Diaper Change Car Ride Push Ball Bounce Wait On Off Light Shoes Socks Book Look Tray Floor Egg Cereal Walk Funny Spoon Fork Wash Sit

Phrases
"Change Diaper" "No Rocking" "Time to Sleep" "Come on or Come Here" "Calm Down" "Good Boy" "Eat with your spoon" "All Done"

Emerging words & phrases:
His name-AJ Color Toy Dog Cat Bed Smile Laugh Mommy Daddy Grandma Grandpa Potato Crawl Frog Table Out In Bath Body-Parts

"Go get _____." "Good Morning AJ?" "Where's Daddy?" "Where's Mommy?" "Where's doggy?" "Where's kitty?" "Do you want _____ ?" "What do you see?"

Yelling at the Dog

Well, normally we wouldn't encourage such a thing....

For the last few days I've been suspicious. While sitting in the highchair, eating of course, our dogs, (Yellow Lab/Great Dane Mix & German Shepherd) can always be found close by. On Wedneday, it was official. AJ yelled at the dog! Sunny, our yellow lab, walked past his tray and AJ let out a big "Ehhhhhhhh!" He didn't want him by his tray! He did the same thing to Rocky, our shepherd this morning. Oh my. I guess they'll have to resort to eating dog food again...

This is great in AJ's world of communication, because he's figured out another way (besides fussy or throwing a tantrum) to express his feelings. He yelled with purpose!!

Booth Testing #3

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

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

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

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