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...

Friday, October 10, 2008

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!

Wednesday, October 8, 2008

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.

Tuesday, October 7, 2008

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!


Saturday, October 4, 2008

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!

Friday, October 3, 2008

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?"

Thursday, October 2, 2008

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.

Introduction

On September 15th, 2006, we received “The Call”. “A baby boy” she said, “born in Escuintla, named Alejandro.” That was the day we fell in love with our son. AJ (Alejandro Jas) was born on June 28, 2006 in a small clinic in Escuintla, Guatemala. He was premature, weighing just 3 lbs 8oz. He spent the first month of his life in the hospital due to respiratory distress & neonatal pneumonia. In July 2006 he was released to a private orphanage in Guatemala City. We saw his picture for the first time. That picture…was worth more than a thousand words. We were told he was happy, healthy, and doing well. In late February 2007, we flew down to Guatemala to meet our son for the first time. His caregiver, S, picked him up and I thought she had the wrong child. He was so tiny…We spent the shortest 24 hours ever with him and then took him back to the orphanage. That was, up until that point, the hardest moment of our lives. It wasn’t until I handed him back to S that my heart fell apart.

Our case was still not approved by May, so we made the decision that one of us should be there to celebrate his first birthday in June. Daddy, in an effort to save time off of work for the pick-up trip and the days following, stayed home, and Grandma came along for the trip. It was a few days before his birthday when I saw my son’s face again. There he was, smiling in S’s arms. We were able to spend a few days with him this time. We celebrated his first birthday by blowing out a “1” candle that we stuck into the hotels famous pancakes (yummy). AJ was sick, as he always was when we visited him. We also discovered he still wasn’t eating solids, which was beginning to worry us.

Then it happened…on the last evening Grandma and I were with AJ, I checked my email in the hotel internet room. Celebrate it said…You’re out of PGN! Our case had been approved and AJ was officially our son! I ran across the courtyard/dining area and scared Grandma as I burst in the room and shouted “We’re OUT” with tears streaming down my face. I called Daddy and shared the news. The next day we returned him to S and she was surprised I wasn’t bawling. Knowing we would return in a few short weeks calmed my heart and I knew he was in good hands with her. We flew home on his actual birthday…I remember seeing the Summerfest fireworks from the plane window. Happy Birthday AJ, I thought…

On July 25th we flew to Guatemala City for the final time. Our son was placed in our arms at 5:47pm on Friday night, the 27th. He was sleeping. Reality begins to set in. We spent the weekend bonding with our son before his US Embassy appointment on Monday. All went well, as our tiny little son, weighing just 13 pounds at 13 months old wearing 0-3 month clothing, slept in my arms as it became official: he was ours in the eyes of the United States. We flew to Houston on Thursday and stayed overnight with family. Friday afternoon, August 2nd, we arrived in Milwaukee with a very sick child. He had been violently ill on the plane. Family and friends that had gathered to welcome us still tell us AJ looked “Green” when we came up the terminal. Once in the car on our way home, AJ became fire hot and was ill again. We both looked at each other and said “hospital or urgent care.” We opted for urgent care. He was diagnosed with a 102 fever, an upper respiratory infection, and double ear infections.

Oh what we didn’t know then…Here we are; a year and some months later, in the midst of testing for cochlear implants.

AJ was diagnosed with profound hearing loss on November 28, 2006. We were told there were no responses on the ABR test for either ear. An appointment for hearings aids was set up although we were told with his level of loss, they usually don’t do enough. A few days later, on December 5th, AJ was diagnosed with cerebral palsy. A mere hour after that appointment, my Dad lost his long battle with cancer. Our world came crashing down in a matter of days. We tried to blow things off when we told other people. “Well, we thought he had some hearing loss because he wasn’t responding to us, and well his CP isn’t that bad.” Inside, we were beyond devastated. AJ was also diagnosed with failure to thrive and esotropia (crossing of the eyes).

AJ is TRULY our Guatemalan Miracle. We now have an absolutely wonderful team of specialists, therapists and teachers that follow him. It is now estimated that AJ was born 8-10 weeks early. (We had been told 4-6 weeks with his referral). AJ began receiving physical therapy and occupational therapy shortly after we arrived home. He was basically a newborn. He could flip over (not properly) and that was about it. He could not support his own head, bear weight on his legs, sit, stand…the list went on. Early Education through the Center for the Deaf & Hard of Hearing, along with Speech and Feeding Therapies through Children’s Hospital began in January of this year. In one year, he caught up a full year in most areas. He is a smart cookie. He crawled a day after Christmas last year. He can walk, although his preferred method of transportation in still crawling. He averages about 6-8 feet in length when he walks. The fact he is walking-is a miracle in itself. He can eat with a spoon or fork, although he prefers his paws (what 2 year old doesn’t?) He drinks from a sippy cup. He uses two hands for most things. He has become very vocal since he’s been mobile…his vocalizations continue to increase as he’s walking and has now had his hearings aids for over 10 months. His weight is still an issue, as we are currently sitting at 18lbs 13.5oz at 27 months old.

He had loaner hearing aids until May of this year. His new hearings aids did not give him anything more than the loaners. AJ –with aids- can hear environmental sounds, around 70dB. In early July we attended the Cochlear Implant Picnic and met with a very nice family whose 2 year old had bilateral implants. It was the best thing we could have done. We finally saw a child with implants and spoke to the parents about their journey. For the first time, we felt “ok”, someone knows how we are feeling and has been through this before. On July 9th it was FINALLY decided that we would begin the cochlear implant process. We are over ½ way in the process, with only a booth testing to go, psychological evaluation, and surgeon consultation to complete. AJ’s surgeon is his ENT, so we are familiar with him. Daddy and I are very much ready for our AJ to hear. While he is recognizing sign language, we must remember he had no language at all for the first 13 months of his life. He wasn’t exposed to signing until 9 months ago, and didn’t hear until 10 months ago (with his aids). Technically his hearing is that of a 10 month old or less, language is at a 9 month level or less. He definitely understands about 20 sign words. Wow-now that I’ve counted-I hope I remember to share that with his Early Ed .Teacher this week! His specialists (where applicable) feel that his hearing will boost his developmental delay. Daddy and I strongly believe this. We will do whatever we can for our son. AJ has taught us patience, determination, and never-ending love. At times, our world is very lonely. We don’t know many other parents that have a child with two disabilities. It has only been in the last few months that we have found support through other CI families. AJ is the definition of taking one day at a time. One of his contagious smiles can light up a room. His giggle is hilarious, especially when he’s tickled. We love our little man, and can’t wait until the day we can tell him “We love you, AJ”…and he hears us.

So, should we ask the question for you?

What is a cochlear implant?

Stay Tuned...

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