Make-Your-Own Mud Pudding

As I've mentioned before, AJ's preschool class has themes throughout the year.  This last Spring (I said I was behind in posting, this is like way behind) one of the themes was The Farm.  They also used the book Mrs. Wishy Washy.  I did some searching on one of my favorite websites and found this:

Pudding in Baby Food Jar Recipe-Great to Use the book Mrs. Wishy Washy

Supplies:

1 box SUGAR FREE chocolate pudding

You must use sugar free or it won't turn out

Baby food jars (emptied/washed/dried)

Milk

*Optional: animal crackers

Measure 1TBSP AND 1 TSP of pudding

Place into jar.

Add 1/4 cup milk

Place lid on tight and SHAKE!

It will darken as it thickens...

Add some animal crackers...

Enjoy!

For the original recipe and a printout of the directions, click HERE.

Preschool 2010

AJ's 2nd Year of Preschool

2010-2011

First Day

First Lunch

After 2nd Full Day

Up, Down, Catch 22

Yesterday morning I wrote the "Shenanigans" post.  Everything's great, la la la la.  I think I set myself up for disaster, sometimes, you know?

We went to his auditory therapy appointment, where his new teacher met us to observe, and it was the holy grail of disaster.  While he is tolerating being bilateral again, he is extremely sensitive at times.  It comes out of no where.  His first major meltdown came after both myself and his therapist praised him.  Apparently we were too loud, because it set him off like a fire alarm.  Between a combination of giving him some quiet time, then holding him, then showing him his absolute.all.time.favorite.auditory.therapy.time.toy, he calmed. But then go upset again when we took said toy away, because it has lights and spins and in his rough state we knew he'd stim on it.  Stim on it?  Focus solely on that toy, stare at it and ignore the rest of the world.

While he was screaming, I found myself in yet another Catch 22.  I knew if I took his coils off, he'd stop crying, thats what he wanted.  We are in  very delicate stage right now in that we don't want to develop a dislike for hearing the world, or be in pain, but we don't want him to think he can just take them off whenever he wants and get his way.  This is where the "AJ whats wrong...Mama my ear hurt" would come in really handy.  I found myself getting worked up, and embarrassed.  I know the teacher who came to observe, but I always get nervous when someone is around AJ for the first go around.  I would be a bit intimidated if I had a child I was observing and he was screaming bloody murder, wouldn't you?  This teacher has been around AJ several times now, so I know better, and perhaps I am not giving her enough credit.  But in the moment, I felt myself getting rather worked up and frustrated while I was holding my son, trying to calm him.  This is the Mom feels helpless routine. 

We kept plodding away with activities and eventually AJ participated, begrudginly at first, but then gave in.  We kept our voices calm and cool and continued on.  He did do some great listening skills that day. 

We wrapped up the session to give AJ's therapist and the teacher a chance to talk.  I joined the conversation, where I shared his "OOOO" for "ON" and "AH" during ma-ma-ma.  His teacher could tell his body language changed, showing he understood when we'd say "bye-bye" to a toy and he'd look over at his therapist, anticipating the bucket to appear from behind her.   From sitting next to him, we saw him pause and look.  He participated in a bit more of vocal play this time around.  The joint consensus: AJ is inconsistent. Big surprise right?  This makes it very difficult to figure out exaclty what AJ can do.  Is he vocalizing with intent?  Is his imitating? 

We left the appointment and made an impromptu stop at the park to meet up with a friend, where AJ proceeded to have a meltdown about the swings.  I let him swing for a few minutes and then took him out to see if he would enjoy those rock-back-and-forth-horse-things-on-springs at the park.   He screamed bloody murder.  A full all out tantrum. After he calmed a bit, we eventually went back on the swings for a short while and he crashed out cold in the car on the way home. While he enjoys swinging, it also causes him to loose where his body is in space.  Its very odd.  I would have thought since he loves the vestibular movement, it would do just the opposite.  Nope.  We will keep trying, and hopefully each time he will learn to calm himself.  I do know that we can longer swing him for long bouts of time, just because he likes it so much. 

We zoomed on over to school for "Meet the Teacher Night".  I can't believe how much is classmates have grown.  It was great to meet a new parent, who was the carbon copy of me last year.  So nervous about her kiddo attending school for the first time.  It was nice to be on the other side of the fence and calm her nerves, at least a little bit.  We met some of AJ's new classmates and I got some clarity as to how this year is going to work.  Very exciting stuff! 

We left, due to AJ going into "Mom its loud and I can't take it" mode, and the car ride home was intense.  I think I was coming off of a nervous-high intensity day for me and AJ was tired, hungry, and of course, trying to tell me by whining.  I sort of barrelled through the door when I got home and Jeremy knew he was on duty for a moment, or three, while I took some time just for me. 

I hadn't realized how nervous I had become about AJ returning to school.  I know he'll do fine.  But I still get nervous.  I know the potential this kid has, and I become frustrated when something or even AJ himself stands in his own way! Knowledge is power, and up until yesterday, I didn't have all the pieces.  Heaven forbid. 

I was upset about his therapy session early in the day.  While I know today is a new day and yesterday is behind me, I was still frustrated about that session.  Not at AJ, but at the fact he got a blasted ear canal infection at the worst possible time, in the worst possible ear, and is having the worst possible (in our opinion) time bouncing back from it.  We have done all this hard work boosting his auditory skills and it sort of is, down the drain.  I know, dramatic, but true.  As we were walking out, his therapist and I were both really bummed about his sensitivity to sound right now.  We don't even have enough to say whether what we are doing is working/not working, in regards to whether we should continue therapy or not.  So we decided to keep plugging away, and will continue therapy into the school year.  While this makes both Jeremy and I extremely excited, the reasoning behind it made me sad.

I took a long shower and settled into the couch with the "your kid is starting school" packets we received last night.  I love paperwork!  As I read, I watched my boys wrestle and watch the Packer Game.  It was the perfect end to a very hectic day.

A Whole Year

I seriously cannot believe AJ is finished with his 1st year of preschool.  When did that happen?  Wasn't it just yesterday we were struggling to find a backpack that he could carry? (Didn't Happen). Wasn't it just last week we went school supply shopping? Wasn't it just yesterday Jeremy and I dropped him off and I was stifling pyscho-mommy tears down the hallway, breaking into a fast-power walk so that no one would see I was about to lose it. 

I am always thankful for pictures and videos.  I know, I know, I drive some of you crazy with my picture taking.  I want to remember these things, peeps. Right, Uncle Dustin?  (Uncle Dustin is my picture-taking partner in crime)

It surprised me to no end to see a photo of AJ and I on his first day of school.  How much he has grown, physcially, emotionally, socially, and as a little learner.

He's a much better walker, both independently and with a hand.  He's taller, which helps A LOT.  He learned how to stand in line (with Mommy) when the bell rang vs. taking off toward the lower level or down the hall to his classroom.  Overall he did very well with potty training at school and was able to step up and down on the stepstool himself to wash his hands.  He learned to get in and out of his chair on his own.  He gained upper body strength and built up his trunk by working with the school PT.  He learned how to fingerpaint, and paint with a brush without putting it in his mouth.

At the beginning of the year there were many tears when transitioning from activity to activity.  He would often have to be rocked to be soothed.  He would self-stim by rocking himself on the floor and/or arch his back in that "I'm a CP kiddo, I know how to use my tone," attitude.  When we walk down the stairs to school, he can't get in the door fast enough.  He's happy to be there.  He laughs and giggles and enjoys his day.

Socially, he's grown a lot.  While it may not show on paper, our eyes see it.  He smiles at his peers.  He engages with them.  He participated in 1:1 activities with a peer very well.  He even asked one of his friends for the glue a few weeks ago by signing "please".  He recongizes and knows ALL of the staff that work with him, which is awesome to see first-person.  His peers took cues from AJ's teacher on how to best get AJ's attention and all treated him like one of their own.  I had been worried they would treat him differently.  Anything but.  That makes me proud, and they aren't even my kids.

As a little learner, AJ has made huge progress.  Everything has been trial and error with AJ.  He was a clean slate.  No column A or B.  A bare chalkboard just waiting for knowledge.  During the month of May, AJ's language via signs exploded.  He resumed using the sign for "more", and added "please" and "eat" to his vocabulary at school.  Since he's been out of school he's officially added "on" and "all done".  He's even putting them together, like "more please".  Although sometimes its tricky, as he goes through his little roladex of signs to get what he wants.  There is less of the roladex idea going on currently, which is awesome.  I don't have time to list all of the gains he's made as a learner, but take my word for it, he's coming a looooooong way since September.

He had made so much progress as a learner.  But honestly, I didn't see it. At first.  This special needs whoo-ha is tricky. 

In this corner "Focus on what your child can do, explore their possibilities, cherish every gain".

In this corner "Here is this evaluation, this checklist, this test, this review that says your child isn't doing this, this, this x 1000.  You need to do this, this, this x 200.  Despite that, we don't know whether he'll do this, this or this"

DING DING. 

I'm down for the count.

It really does take a lot for us ok more so me to step back from today's reality and look at how far AJ has come.  I wish each one of you could have been there when we stepped off the plane at Mitchell.  While it often brings sadness, I force myself to look back at those pictures and videos to see JUST.HOW.FAR.HE'S.COME. Because it is so difficult to be positive and la-tee-dah when that second corner fighter is constantly in your head.  He's not the same child who came home.  AT ALL.   I had almost forgotten that AJ crawled just 4 1/2 months after we brought him home.  Jello to Mobile.  That's pretty incredible. 

I am impatient.  Of course we want AJ to be doing more, learning more, communicating more.  All of the above box?  Check.  There are hopes and dreams for AJ that we have adjusted, bust certainly not given up on.  While I won't apologize for being impatient, I do realize that we won't get wherever we are going in a hurry.  Steady wins the race.  Unless your driving a canary yellow Porsche 911 Turbo.

A few days before school ended, the class took a trip (with parents) to the zoo.  In the moment, I was frustrated because AJ was not paying attention to the animals, his implant just would not stay on, and neither were his glasses.  Sometimes AJ's delays are ever present and it just.bugs.me. But looking back, it made me sigh with tears in my eyeball when all the kids saw us arrive and ran to greet AJ.  They were so excited to see him.  It made me smile when his teacher showed him the camels. He enjoyed lunch, strolling around in the stroller, and he really loved the carousel. 

AJ's teacher saying/signing "camel" with AJ

AJ & Mommy on the carousel

The last day of school was also AJ's first day with two ears! All of the parents were invited to watch a slideshow of the entire year followed by a picnic to a nearby park.  We spent some time at the park, where AJ heard a plane for the first time and really tuned into some of the parents who bent down to talk to him. We were lucky enough to be part of one big happy preschool family.  Its been an amazing year! 

Last Day of School (w/Two Ears)

AJ won the "Gold Star Work Ethic" award which read:
AJ worked daily and did whatever our staff
and peers asked him to do. 

He works with many staff members. 
Way to go AJ!

I'm looking forward to seeing what kind of

 progress AJ makes next year, aren't you?

S&T

Scholarship:
I'm sure you remember that I mentioned we applied for a scholarship to attend the AG Bell Biennial Convention in Orlando this year. 

Well, we didn't get the scholarship.  They had around 65 families apply and gave 5 full scholarships/1 half scholarship.  We were really bummed.  Ok, beyond bummed.  I was also kicking myself for not understanding what a great opportunity we had back in 2008, when the convention was right here in Milwaukee.  Hopefully, we will be able to attend the 2012 convention without relying on a scholarship.

School:
We met with AJ's teacher and SLP at school a few days after his surgery.  Nothing like crunching everything together, right?  Anyhow, our purpose was to pow-wow before AJ's actual IEP meeting, which was the following Friday.  We got quite a bit accomplished!  We reviewed AJ's (then) current IEP (Individualized Education Plan) and both Jeremy and I were both pleasantly surprised as to how many of the goals he had already met.  He had more "met" or "emerging" than "not met" goals, which was very encouraging.  I hadn't looked at his IEP in quite a while.  It was a mirror with a much different reflection.  AJ had progressed.  There was no denying that.  We discussed what we were going to "pitch" to our home school district about schedule, and his current needs, etc. 

AJ's IEP meeting that following week went OUTSTANDINGLY WELL.  It lasted 1 hour and 15 minutes...which I think is a record.  It was smooth as silk.  The principal sat in on part of our meeting, which was interesting.  He totally reminds me of my own grade school principal.  It gives me warm fuzzies that everyone in the building seems to know who my little man is and when his own principal cheers him on in the hallway...that is special. 

AJ will again be attending Lowell for the 2010-2011 school year.  YAY!  He will go a full five days, with 3 half days, and 2 extended days.  Which means two days he'll be eating lunch in the lunch room with his peers.  That just screams "boy" instead of "toddler", doesn't it?  We are pleased with his new goals, some carryover from the last IEP, but most of them are new.  He will also be participating in a special PE program, which is super exciting. 

AJ's last day of school was last Wednesday.  I am so sad the school year is over.  The year ended with a field trip to the zoo, and on the last day, a slide show and picnic at the park.  I really feel like we're a little preschool family.  All the parents know one another, and support each other's child.  The staff for the preschool program...I don't have words.  Really.  They are all amazing and we are so blessed to have them help AJ on his educational journey.

All of the kids have grown over the year.  It was truly amazing to watch them all grow as kids and as learners.  I truly enjoyed my time volunteering this year.  I've been asked to return as a volunteer, which makes me very excited!!  We'll start school again in September.

While AJ is technically out of school, he's not really on vacation.  We struggled and struggled with how to best support AJ over the summer, especially in the area of speech/auditory skills/language/communication.  While everything else seems to be chugging along, these seem to be sitting on the tracks.  I will say that AJ had an explosion of signs that emerged in late April/early May which made all of us ectastic! 

Last but not least, AJ qualified for ESY (Extended School Year) through the Waukesha School District. He will attend two days a week, for about an hour, from late June through July.

Therapy:AJ will be working with the AVT (Auditory Verbal Therapist) at the Center for Communication, Hearing, and Deafness over the summer.  We will see the AVT once a week to work on Auditory Skills Development and hopefully he'll make some wicked progress.  I'll write more about this later.

In addition, AJ will be attending a tumbling class once a week, feeding therapy once a week, occupational therapy once a week, and physical therapy once a month.  AJ has not had PT since March, due to insurance thinking he's doing too well.  Yeah.  How about that?  His PT submitted for summer sessions only.  We thought it would be a slam dunk, no problem. They approved, with modifications...8 visits from now until November.  We can either fight it or take it.  We've chosen to take it.  Something is better than nothing, right?

Not a summer vacation...but its what AJ needs.

Monsters

Here's what we did at home for AJ's preschool class theme:

Monsters

+ Read Go Away Big Green Monster and worked on this:

"AJ, where does his nose go?"

I found a template for the head and facial features and cut them out of felt.  I printed a coloring sheet of the face, colored it, laminated it, and we used it as a reference.

+ Monster Pancakes
Make pancake batter
Use food coloring to make it blue
Pour batter for 1 pancake into pan, place mini chocolate chips in 2 small bunches to make "eyes", then flip your pancake
Using sm/lg gingerbread men cookie cutters, cut out your "monsters"
Trim the top of the monsters head, arms, and feet...VOILA-FRANKENSTEIN!

+"Monster Mash"
Smashed apples with green food coloring while we listened to the song "Monster Mash"

+Monster Dinner {its hard to see, but its a casserole with a monster face made out of bacon}

+Walked around in our monster shoes

+Colored pictures of monsters (Monsters Inc and Cookie Monster):
You can find printable coloring pages of Disney characters and more HERE.
You can find Sesame Street coloring pages HERE.

I had the great idea to make a cookie monster out of a styrofoam takeout container.  The idea just did NOT work.  Here's a photo I took before we embarked on this disaster.

I wanted some of that furry fabric-like they have those crazy neon furry hats at party stores?  No blue furry fabric or hats to be found.  I settled on blue felt, but it just.did.not.work.  The only thing that looked cute was the googly eyes we glued on...and the fact that there were mini chocolate chip cookies inside the container (we made his mouth where the container opens so it looked like he was eating cookies).  See, some of my best ideas just don't pan out.

Under the Big Top

As I've mentioned before, AJ's preschool program rotates classroom themes throughout the year.  One of the biggest challenges we've had with AJ is keeping him occupied in the afternoon after he is home from school.  Honestly, I think he could do full days next year.  Anyway...

At first, AJ's daily activities were far different from what his peers were doing.  This was for a number of different reasons, with the most important being this: What was developmentally appropriate for AJ's peers was not appropriate for AJ.  I love that I just used PAST TENSE. 

Now that he has grown as a learner, his activities involve the current classroom theme.  Activities are adapted to AJ's level if need be.  AJ's also been interacting more with his peers, both 1:1 and during the group activities. Its a "lets try it" aura I'm feeling when I'm fortunate to see him in the classroom setting. 

His teacher has been giving me a heads up on the next theme just as the last one is ending.  We've been trying to create a smooth and fun transition from school to home.  How can we continue the theme here at home? The last theme was the Circus & The Little Engine that could.  At school, AJ pasted tickets onto paper, matched same color clown face pieces, made clown hair, made "cotton" candy, painted with popcorn, and made this adorable elephant from an old CD.  They had snowcones and all kinds of circus treats one day for snack.  So, what did we do?

Circus &The Little Engine That Could

Clowning Around-Clown Hair & Jokster Glasses

Making Popcorn

This is how you do "snow cones"

when your blender is packed in a box

Painting a Circus Train Car

(Yes, it came with the monkey)

Enjoying the carousel Great Grandma gave him
{So perfect for this theme!}

Sorting Clown Noses & Wood Trains

We also played with clown noses, taking them off and putting them on,

 trains, train tracks, and read books that had to do with trains and/or the circus. 

 I found a book for 0.39 cents at a thrift shop

about a circus elephant and Thomas the Train.

We ate hot dogs and all kinds of other fattening foods

you would find at the circus. 

(This theme is grrrrreat for his calorie needs!)

Some of the items I already had, some I bought. 

Had: trains & train tracks, stuffed elephant, silly string,

carousel, popcorn, popcorn popper, paintbrushes

Bought: Circus Train $5, Paints 3/$1, Stick-On Jems $1,

Icee Cups $1, Jokster Glasses & Nose Sets 4 @ $1,

Wood Trains 4 @ 0.59

Step Right Up!

Stick Figures and Velcro

Grab your coffee, caffinated soda, or a whole pitcher of strawberry margarita and settle in.  This one is a long one...taking me a few days to finish!!

PT: We switched up AJ's kinescio taping.  We were taping from the inside of his foot, around the bottom, up the side, almost to the knee, on both legs.  We were also taping an "upside-down V" above his tush running diagnonally down the top of his tush to the sides of his thighs. 

Sometimes his AFOs and shoes get wet when we don't get to the potty in time.  More than once I have picked him up at school with just socks on.  I mean, clothes and socks.  Meaning no AFOs or shoes.  Just to clarify.  By the time I'd get home, AJ would have his socks off (which was a given) AS WELL as the kinescio tape.  He also started pulling the tape on his thighs while sitting on the potty.  Seeing as the stuff is $18/roll and we use a roll in about 2 weeks if I really stretch it out, this was a big.BIG.problem.

We've been taping him using one long continuous piece-12 squares worth.  The tape comes with a background (white non-stick paper) that has lines/squares marked.  That way I know exactly how much I need each time he needs to be retaped.  We tape from just over the right shoulder, diagonally across his back down to his tush (creating 1/2 of the original "V") on the left side, and wrapped around his left leg, ending just below the back of his knee.  It seems to be working well.  We took a break from taping for about a week, as AJ had scratched himself pretty good where the tape started at his right shoulder.  We gave it time to breath and heal with the help of some triple antiobiotic ointment.

AJ continues to LOVE the treadmill at the clinic.

Last week he did his record best: 10 minutes 17 seconds! Part of that time he spent walking on his hands.  By his choice, not his PT's.  None of us opposed this momentus activity.  He's alternating legs while going up the stairs and actually prefers to hold your hand and step.  His biggest gain: he rolled a ball-multiple times-back and forth across a table. 

We continue to work on balance, stairs, kicking a ball, and jumping.  He's able to get off and on his bed without a step-stool and climb up and down the 2-step stepstool.  He can squat and pick things up better than Jer and I can sometimes.  AJ can walk the entire length of the hallway from his classroom to the front doors of his school, out the door, and up the 6 long stairs up the hill to street.  One of these days I need to remember my camera and video him. 

The only concern we have at the moment is his "cute" floppiness.  The kid knows he's cute.  Often, when you are walking with him, holding one hand, he'll noodle.  And you're left holding him like a corkscrew.  Its really not safe.  He knows you'll hang on to him.  This is a concern and also dangerous since he things its "funny".  He's taken a good number of spills in recent weeks.  He must learn to hold his own body weight functionally. 

OT:  We have increased AJ's constraint therapy to 1 1/2 hours a day.  I'm so thankful he doesn't mind it.  We've had a few questions regarding his constraint therapy....
 
We do this at home ONLY.  We bought the cast outright instead of submitting to insurance and waiting for denial.  Getting online, going to Sammon Preston, clicking "add to cart" and the cast arriving on my doorstep was much easier.  We call it his "Bubble Arm" but its really called a Urias Pressure Splint.  We ordered a child size-16 inches-so he has plenty of room to grow into it.  It was $56 + shipping.  Note: You need a Rx (prescription) in order to do constraint therapy!!!!

His fine-motor skills have improved dramatically.  Occassionally he'll use his right hand only to grab and hold his juice box, just because he's a kid and thats what kids do.  But overall, he's using his left side spontaneously and crossing midline (reaching across to his right to grab something with his left hand).  Crossing midline is just as exciting as when AJ came to midline! 

The other day he put the cap back on the Tylenol bottle.  I was amazed he just knew where it went, and then when it set it on top, I was shocked.  Dare I start probing him to see if he can match things that go together?  AJ is also bearing weight on his left side while side-sitting and is actually using his left hand to help him climb onto things, rather than tucking it under his body and only using his right arm.

Physical Medicine Follow-Up {CP Doctor}: AJ saw his CP doctor at the beginning of february.  Usually AJ's PT comes along so we get the "professional courtesy" of not waiting a good 2 hours to see her.  This happens even when there isn't anyone in the waiting room.  Boggles my mind.  Anyhow, his PT couldn't make it so I was prepared with snacks, toys, activities, galore.  The time from the waiting room to the exam room is quick, but the time in the room can be plain ridiculous.  Especially with an ancy 3 1/2 year old. 

We only had to wait a half hour!  I was so excited.  I was shocked and humbled by the nurse placing us in a room with a regular exam table.  It wasn't the usual room with the therapy table (I call it the bed).  It was a gentle reminder that my little man is indeed, mobile.  He CAN move his body.  He CAN walk.

AJ and I sorted sssssocks and sssssnakes on the floor while we waited.  I even got the chance to educate the nurse on cochlear implant.  She was very interested and I was happy to oblige. His CP doctor was very impressed with how he's doing.  She gave us the prescription for constraint therapy and said no to botox.  Yes, I said botox.  How does botox work in patients with cerebral palsy? Given in small doses, the botox relaxes the muscles and reduces stiffness. Less rigidity, less spasticity.  Botox treatment in CP patients is still controversial.  Sounds like CIs in the world of hearing loss, hey? AJ has enough rotation in his foot that he doesn't need botox right now.  We'll revisit the idea in July at his next follow-up.  

The concern is his left foot and how it continues to turn in.  She watched him walk barefoot multiple times and noted that it doesn't turn in all the time.  I thought that was interesting.  It turns in, then straight, in, then straight.  She suggested continuing taping (as long as its working), continuing the exercises and deep massage, and showed me where to watch for stiffness in his foot.  We finally heard the results of his baseline x-rays, done last fall.  Results were normal.  Whew.  Hips, pelvis, and all that jazz were just fine. 

We discussed speech therapy, she was shocked he wasn't in therapy outside of school.  She saw no reason for us not to approach insurance with the need for speech therapy for medical reasons, not the whole hearing/listening/speaking component.  I shared "the news" with her (see "the news" below in CI subject header), to which she wrote me a prescription for speech therapy 4-5 times per week for the summer.  *Smile*

Neurology Follow-Up: Fantastic! AJ is progressing nicely.  His neuro was not concerned about his development, he thought he was doing phenomonally well given all that he has overcome.  So as far as development is concerned: Poop on you Mr. Development Specialist who only sees my kid once a year. He also was shocked AJ was not in speech outside of school  Ugh!!!!!!! Frustration continues to build.  Can you tell?  He made sure to write in his report that AJ should be receiving speech for medical reasons. 

AJ's head grew, which means his brain is growing appropriately.  This is always our biggest concern at the neuro. AJ also weighed in at 23 lbs 6 oz, which thrilled me.   I know what I say about different scales, but I'll take it!  All in all it was a great visit.  We got another free pass to come back in a year. 

CI 9-month Follow-Up:  His CI Audi did an ESRT (Electrical Stimulus Response Test) instead of regular audiogram.  The ESRT consisted of a small probe (like the ones they use with tympanometers to do tympanograms on those with hearing loss).  The probe was connected by wires to a cuff  that his audi wore around her arm. The wires continued from the cuff to the machine his other audi was running.  The point of the cuff is to keep the wires as still as possible.  Each time the probe was placed properly and the test was running as is should, the light would be green.  If he moved or the probe came out just a slight bit, it would flash orange. 

Movement screws up the results.  Fanstastic for a 3 1/2 year old.  Who doesn't like movies.  And doesn't have patience for toys that don't work or a lack of bubble juice.   Moving on....  All in all he did do very well.  They were hoping to test 2 of his electrodes, they got 7!  The ESRT gives them a better idea of where AJ's sound threshholds are, since he's not the greatest booth tester.  He was given a new map, which he needs to try out for at least a month.  It's working like a charm!

And "the news" is: AJ is getting his 2nd cochlear implant.  His left ear testing is coming up soon and we'll meet his surgeon at the end of next month.  I'm still sad his original ENT/Surgeon isn't with CHW anymore.  *Sniff Sniff*

If things move as they should, he should have his implant surgery this summer.  We are pretty sure AJ's primary insurance will cover (as I've already spoken to them about it multiple times), but unsure about T19.  They haven't been responding to CHW very quickly.  That's ok.  If we need to, we'll fight 'em till we win-again.

T19/Medicaid:  We were still waiting on the PA for the speech that was ordered following his swallow study. Yeah.  Needless to say the PA request was cancelled as we are moving in a different direction (see speech subject header below).  We also received our yearly packet of forms for his state insurance.  This year requires a home visit.  Which doesn't really make me nervous, as I know he'll qualify, but I still have this pit in the bottom of my stomach about it.  Having T19 as AJ's secondary insurance has been such a blessing, the paperwork is beyond worth it.

School:  I don't know where to start with this one.  We had a wonderful "pow-wow" with AJ's teacher a few weeks ago.  It.was.awesome.  We were able to review the communication assessment she and his school SLP did following the video assessment for the emc3 curriculum. AJ is at what I would call an in- between stage with his communication.  He's mostly using gestures or movements to communicate.  Our goal is to move him toward symbolic communication.  What is symbolic communication?

The biggest thing I took from that meeting was answer to my question of "Why?".  Ok, one of my answers to my many questions of "Why?"  I've always been confused as to why, even though AJ's been exposed to sign language since 18 months old, he's still not signing or communicating.  His teacher LITERALLY drew a stick figure to represent AJ.  We figured out how old his eyes are.  How old his "ear" is.  Where is his hand function (fine motor)?  His walking, etc. (gross motor)?

I had this moment of clarity. 
Ear: 10 months
Eyes: 8 months
Fine Motor: 18-24 months
Gross Motor: 14-15 months
*Motors are estimates, they change and don't account for his scattered skills in higher functioning areas

AJ is truly all over the board with his skills. And that's OK. I'm working on a nice drawing of him as a stick figure, holding these numbers.  I'm going to frame it.  To keep my line of focus. And as he changes, we can change the numbers.  I'm thinking this will be a positive thing for all of us.

AJ's teacher also had the Waukesha School District Vision Specialist come and hang out with AJ.  I happened to run into her a few days later while picking up AJ from school.  It was wonderful to chat with her in person.  She felt there was no issues with his acuity (picked up a grain of white rice off the tray immediately).  However, when presented with pictures, he just picked them up and played with them like a toy.   If something didn't hold his interest, he'd zone off looking at the lights or around the room. Typical AJ.  She wasn't sure about the pictures, if he just wasn't developmentally ready, or it was something else. 

On my drive home that day, I had an epiphany.  AJ was really never exposed to pictures.  Like, here's a picture of a ball, truck, and apple.  AJ, where's the apple?  He couldn't hear! He couldn't see properly!  There was one book with pictures he loved, but it was a chipboard book with 9 pictures to one page.  He was fascinated with the food page.  He wasn't exposed to books or pictures continuously unitl he was home here with us.  We just never did the picture book thing.  I know, bad Mommy.  Bad Daddy.  But honestly, AJ was so trapped in his little world, there were some things that we just didn't do.  He's just now enjoying books and beginning to continuously visually attend to them.

I shared my thoughts with AJ's teacher about his limited exposure to pictures.  I also shared how he loves his "AJ" and "Family" experience books.  Those have pictures of him doing his daily routine and pictures of our family.  Picture concepts : On My To-Do List.

We had AJ's parent/teacher conference this last week.  Things have changed.  Oh, have things changed.  It's simply wonderful.  We heard from AJ's PT, OT, and SLP at school.  After probing AJ, it was suggested that we begin helping AJ communicate with the use of physical objects.  We had discussed a switch or picture boards, etc. before, but it was agreed that this would be the most beneficial place for him to start. 

The awesome thing?  He's already doing it!  The day before the conference, AJ went into the garbage (it was uncovered) and grabbed a tv dinner box.  He brought it to me.  Translation: Mom, I'm hungry.  Wednesday, he brought me a fork.  Translation: Mom, I'm hungry.   Today: He brought me his coat.  Twice. Translation: Mom, I want to go bye-bye. 

The idea is to pair an object with an activity or items in his daily routine.  I was able to watch AJ communicate using this technique with two vibrating toothbrushes (lets call them VT A&B)  at school. His SLP held VT-A (vibrating) behind his CI processor.  He heard it, located (non-vibrating) VT-B sitting the table in front of him, grabbed it, and handed it to his SLP, who then said "Oh, you want the toothbrush", giving him VT-A (vibrating).  This can be used with just a single object, or two. 

We have been struggling and struggling to figure out a way to help AJ tell us when he has to go potty.  I think for both Jer and I, as well as his professional staff, it is one of the most frustrating things right now.  Not in a bad way, but I know its on all of our minds.  His teacher came up with using a travel pack of wipes.  GENIUS!  We keep them on the end table in the living room.  When we go potty, we take him to the table, grab the pack, walk to the bathroom, make sure he can visually attend to it at some point when he's in there, then take it with us back to the table when we're finished. We've decided to do 4 of each object (well, for most of them).  One for home, one for in the car/out and about, one for school, and one for 'Drama's house.  I've washed one of each of  AJ's empty milk, juice, and water containers.  We will velcro those to the front of the fridge. That way, he can go and grab what he wants and tell us what he wants.  It also increases his exposure to making choices. 

We still have a list of things, like how do we represent bedtime with an object, and multiples of the same object.  We need to keep these items in the same place all the time, so he knows where they are.  All in all, we are very excited, as he seems to be picking it up quickly.

AJ is interacting more and more with his peers.  They had snowcones for snack last week. I watched, from afar, how he did during the entire snacktime.  He watched the other kids as they ate their snowcones.  He heard one of his peers, when she spoke rather softly, and was 3 seats away from him. He turned to her immediately.  He attened to the blender when it would turn off and on. He participated and displayed patience when they felt, scooped, and blended the ice.  He's become more and more...of a big boy. And I absolutely love it.

I did see how easy it is for AJ to loss or not give visual attention in his school setting.  No matter what communication mode you choose, visual attention is required for all learners.  I'm not talking about lip or speech reading or any of that.  You kinda gotta look at what your doing, right?  Sure, I could tie my shoe now without looking and probably find success.  But when learning, you have to look at that big wooden shoe cut-out and look at where you are putting the laces.  AJ struggles with that idea.  And when I realized his eyes are only a few months old, its all making sense.  His teacher is anxious to hear what AJ's eye doctor has to say. 

Eye Doctor:  We finally have a follow-up scheduled again.  That office must think I am an awful parent-with our cancellations and rescheduling.  Oh well.  Life happens, and I always given them plenty of notice!  I'm anxious to see what she says as well.  This is techically a post-op visit.  She'll be filling out a referral sheet for AJ's teacher, so I'm trying to remain positive.  No matter the outcome, I can only see the information as being helpful, not harmful.

Speech:  After much discussion between Jer and I, AJ's teacher and SLP at school, AJ's former SLP(s) at CHW, his CP doc, his neurologist, and his private PT and OT....AJ will be receiving outside speech and feeding therapy from HealthReach Rehabilitation (the same clinic his PT/OT are).   We have his initial evaluation next week.  The SLP we have chosen is phenomenal.  I have seen her treat firsthand. Multiple times. I believe she is going to be a great fit for AJ (and me). 

To top that off, AJ is going to be eval'ed by another world renowned therapist.  I literally have chills about this.  Some of you may remember that AJ was treated by another rock-star therapist, TWICE.  She is  a PT.  This time, its an SLP.  Jer and I, as well as AJ's entire team, are thrilled about this opportunity.  I can't wait to see what she has to say!

In Other News: AJ continues to do well with potty training.  He averages one accident per day.  Over the last two days, he's gone to the potty and sat down on his own.  This is a huge gain! He did it again this morning and I just had my mouth hanging open.  **Update: This afternoon he walked into the bathroom by himself, closed the door, went and sat on the potty (after he sort of tried to pull down his undies) and went potty!  All by himself.  *BIG CHESTER CHEETO GRIN*

We will be posting information regarding the first HLAA Walk 4 Hearing here in Milwaukee in May.  We have created a team and will be walking for AJ and to help spread awareness about hearing loss.  We hope you'll walk with us or donate! Stay Tuned! 

We are submitting a scholarship application to the AG Bell Convention in Orlando, FL in June.  We are hoping we will be approved and will be able to attend this fabulous national convention.  Wish us luck!

We are also in full swing, planning AJ's 4th birthday party.  Am I the only person who thinks there is a huge difference between 3 and 4?  It's going to be a 'sports theme'.  Hm, I wonder why....

Our house is no where near ready.  So much for our goal of March 1st.  We'll get there, right?

I was asked to be on the committee for the Center for the Deaf and Hard of Hearing's annual fundraiser "Tasting Tuesday".  I am so excited!  Our first meeting is this week and I am hoping to contribute as much as I can to this event. 

I think that's enough, don't you?

Chugs and Kisses

AJ's preschool class exchanged Valentine treat bags.  The kids were sent home with a paper lunch bag to decorate and some suggestions as to what should go in the bag.  Suggestions: Juice Box, Cookie, Fruit or Fruit Snack, Stickers.

We were given a challenge!  I wasn't going to mention this on the blog, but since I know a few of you follow Jeremy's diabetic links on the sidebar, I thought we'd include the details of how this came about.  AJ was given N's bag to decorate.  N is a diabetic. Now, who better to put together his treat bag than AJ, with his Daddy being a RN CDE (Registered Nurse-Certified Diabetes Educator)?!

So, what should we put in the bag?  If you look at the suggestions above, and put your diabetes glasses on for a moment, it really reads carbs, sugar, carbs, sugar. N has a certain # of carbs he can have for a snack. I spent part of one morning at the store scouring the snack and sweets aisles.  You know those 100 calorie packs?  Fantastic idea, right?  Sure, till you look at the carbs.  The magic number here was 15g, so I was looking at the serving size and how many carbs accordingly.  I only found one that was under 15g.  None of them were 15g even.  Most were 16, 17, or 19.  Yes I know they could have counted out how many pieces from the 100 calorie bag he could of had, but I was trying to avoid that. I was aiming for something on the sweeter side, since it was supposed to be a treat bag.  

If you are thinking, did you try sugar free items?  I did.  I looked at the sugar free cookies.  He could have one chocolate chip cookie.  That would have been "ok", but I really didn't want this to just be "ok" for N.  Jeremy (yes hon, I'm bringing you into this!) has talked about how it felt to be a kid with diabetes on certain holidays when he couldn't eat the candy the other kids were eating.  There are ways around those feelings gosh darn it!  We're determined!!

I went to the candy aisle.  EEK!  Heidi, you just typed about sugar and carbs and more sugar being no, no, bad.  What on earth were you doing in the candy aisle?  First let me say, diabetics CAN have sugar.  Big misconception.  I could write a whole post about that.  But moving on... Blam the candy aisle on my Grandma.  She has discovered the sugar free versions of  Russell Stover Peanut Butter Cups, Pecan Clusters, Mint Patties...need I go on?  Hershey's has sugar free candies too.  I picked up the bag of Hershey's Sugar Free Chocolate nuggets and read the label.  5 pieces (serving size) = 25g carbs.  BINGO!  He can have not 1, not 2, but 3!  I found the rest of the items for N's bag and left rather pleased.

On the way to pick AJ up from school, I called Jeremy and shared my frustration.  How frustrating to not be able to find fun foods for a diabetic kiddo for snack.  Do you feel a brainstorming coming? I do!

Below is N's bag.  I watched him tear into his bag today during the class party.  His face just lit up when he pulled out his treats. He was thrilled when he learned he could eat not 1, not 2, but all 3 chocolates! He also enjoyed the transformation of his water, exclaiming "red"! (See below)  His reaction totally made my day and made AJ giggle!

"Ingredients"
-Water Bottle
-Single Serving Sugar Free Drink Mix Packet (Cherry)
-3 Sugar Free Chocolate Nuggets
-Light Up Yo-Yo
-Playdoh
-Brown bag
-AJ's coloring skills
-Valentine paper
-Sandwich baggie (top cut off)
-Silver cord

AJ colored the bag

Finished Product

I wrapped the water bottle, drink packet, and playdoh in fun V-day paper:

Jer, if you have anything you want to add to this, COMMENT!

Lavender and Horseradish

On Monday I had the opportunity to view the video assessment on AJ.  The assessment took him through a sensory journey.  I sort of chuckle at that thought, since that is exactly what the gal's at the spa say to me just before a massage.  They tell me to close my eyes and proceed to swoop different essential oils under my nose.  So I guess this was AJ's version of the spa?  Hm.  I'm not sure he'd agree, even though he sat for a very long time and did not complain.

Below are the "Sensory Journeys" AJ participated in along with how each was presented in { } :
Tactile {rubbed hands with dry washcloth/back scratch}
Vestibular {rocked side to side/front to back, rotary, up and down}
Olfactory {smelled familiar smell: shaving cream/novel smell: lavender oil}
Gustatory {tasted brown sugar, lemon, dill pickle, cumin, horseradish, alum}
Auditory {listened to recorder/clicker}
Proprioceptive {bear hug/vibration}
Visual {Elmo puppet/foil pom-pom}

While watching, I scored the assessment, just as his school team did when they watched it.  We compared scores...we all seemed to score just about the same.  We then discussed, at length, the program's design and how it would benefit AJ. It is amazing how sensory intergration and communication are linked together. 

AJ is now 3 1/2.  He needs, and deserves a more symbolic mode of communication.  The video did show him communicating.  It was remarkable.  He had mostly purposeful responses.  At this time we are not pursuing additional private speech therapy.  I think I was missing the big picture here for a while.  This is MORE than the Lings, speech sounds etc.  He needs "A" form of communication, since clearly, he is trying to communicate to us. 

We've decided to try a switch with AJ to help him communicate. We are moving forward with the Every Move Counts Clicks Chats (emc3) curriculum and will meet with AJ's school team in March (end of Quarter 1) to see how he's done under this curriculum. I really want to order the manual  for emc3.  I was excited to see that its available on the website. We are keeping in close contact with AJ's teacher and his SLP in efforts to continue what he's doing in school here at home. He will continue with his speech and auditory program at school-that is not changing!  We are hoping the switch will serve as a bridge to symbolic communication for AJ. 

I had the rare opportunity to see AJ in action at school one day this week, and was even able to sit in on his speech session.  He was nothing short of amazing.  By sitting in on his speech session, I know we are looking for the p, b, m sounds and how to encourage those. Guess what I heard this morning? A "BUH". :) I also heard a "GUH" and "AH-MMMMMMM" with an open then closed mouth, which is what his SLP said she was starting to notice.  I've got little notepads everywhere so when I hear a new sound, I can jot it down.  I'm notorious for saying he's making new/different sounds and then not being able to repeat them!  His auditory skills are exploding daily.  He found me in the office the other day when I was calling his name.  He was in the living room. 


While his team has been telling me he's doing well, it was awesome to see him in action.  He's changing and growing, and for that I am thankful. 
Oh, the Lavender and Horseradish?  They say lavender is calming.  You betcha!  His response to lavender was just that, his eyes widened and he had this sense of calm.  And, he liked the horseradish.  Eww!

An Intense Blur

PT: For the last few PT sessions, AJ's left leg has been considerably tight. His PT is concerned about this, as are we. She was instantly able to tell we had a lot of family things going on over Thanksgiving weekend and didn't get as much massage in as usual. Unreal. AJ has been growing, as he is all legs right now. Even so, he's due for a HUGE growth spurt. We are not thrilled, to say the least. AJ has and will continue to have severe growing pains. It is possible he will lose the ability to walk. We knew this was a possibility, but have a different outlook on it now that its staring us directly in the face. He continually amazes his PT by his ease with standing back up when he falls down even when his tone is kicking in.

We have a plan of action. We are....oh, whats the word. Avoiding? Maybe. I guess we'll go with that. We are avoiding intervention at this point. Meaning, we are doing what we can before turning to botox or surgery. We have increased the width of his kinescio tape, which is working more "magic". We are massaging him, as much as possible. Even when I carry him facing forward, I'm massaging his hammies. We are also continuing the regular exercises, such as the "foot wiggle" and "runner's stretch". We have created bolsters (for him to climb over) out of round oatmeal containers and duct tape. We have made balance beams out of cardboard. We are tossing a preferred item (as bait) and having him crawl over us to get to it. WE MUST KEEP HIM MOBILE AND AMBULATORY. Don't get me wrong, it is terrifying to hear someone say "Your son may stop walking." But I am thankful that we have asked the right questions and kept ourselves in the loop regarding AJ treatment. That makes it a team effort, and a bit less scary.

AJ's CP is a tricky thing. Because his CP is mild, it can often seem non-existent to an onlooker. People often forget AJ is 3.5 years old. He doesn't move around like a typical 3.5 year old. Just because he is walking, doesn't automatically mean he will continue to walk. Will Jeremy and I do everything we can to keep him mobile, absolutely. Are we confident we can do so? With the help of his PT and physical medicine doctor, absolutely. As AJ grows, this will be a constant battle. For some reason the magic age seems to be 15, so maybe that will be his last growth spurt. PT/OT sessions are on Mondays, so I'm anxious to see what they have to say tomorrow. I think his tone has improved over the week, we shall see.

On a positive note: AJ is getting out of bed with ease and much faster. He can climb off the couch at the speed of lightening. I also witnessed him doing the "Captain Morgan" stance, with his right foot on a box and his left straight on the floor holding his body weight.

OT: AJ has been posturing A LOT lately. What is posturing? When he sits on the floor with his legs out in front of him, the left leg is slightly bent upwards, so it is not relaxed (think upside-down "V"). His left arm also seems to pull in to what I call "typical CP hand placement". I've found us using his Benek hand splint a lot more and catching his thumb resting under his fingers. Not good. We're keeping an eye on it, stretching and massaging his arms as much as possible and doing lots of fine motor (finger friendly) activities. Currently, OT's focus has been dressing. Which is going, eh, so-so. He can definitely take things off, like hats, mittens, shirt (if you bring it up to his shoulders), pants, and socks. He tries to help with his AFOs and shoes. He's getting better at "ripping" the velco straps back on his AFOs when its time to take them off. A lot of hand over hand at this point, but he gets the concept. He's struggling with jacket skills. We've added rings or small key chains to his jackets so he can learn to pull up the zipper himself. I'm thinking about making him a felt board with snaps/velcro/zippers on it, just to practice. He still hasn't got quite enough balance to be able to pull his pull-up or pants down himself in standing position. He can get his pants off sitting down, fancy that.

AJ learned (after just 2 hand-over-hand experiences) to give his Daddy HIGH FIVE! YAY!! Bonus-he can do it with both hands. Bummer-he only does it for Daddy.

He showed he could reach his left arm (solo) above his head, straight, without his body being in a funky posture. I was amazed. He picked up corn from his corn bin and sprinkled it down on himself. With his left arm/hand! He can do it with the right too, but whatever. :) He's also starting to put puzzles pieces in (not in the right spots, but its effort) after he's taken them out. He also stacked 5 blocks on top of a tower of blocks already 8 blocks tall. And it did not fall. His reach and placement was that controlled.

Speech/CI: We have our first non-cooing sounds! AJ said "AH" and "OW" (as in ow, I cut my finger) on Wednesday during his speech session at school. Since, we've heard both sounds A LOT. He was definitely playing with his voice today-just to hear himself "talk". He's also starting to move his mouth to imitate-or try imitating-your mouth movements. Its hard to explain. Its different, but at least we know its a good different!

We spend Black Friday afternoon at Urgent Care with AJ. Diagnosis: Double ear infections. He's been ripping his implant off, so this may have played a factor. Well, we know it did for a short time. Certain tones of voice, loud noises, or the dogs barking were really bothering him. Then he displayed the classic signs and we knew it was an ear infection.

He's still ripping off his implant. Its a behavior thing. He's getting a power trip from knowing if he pulls it off he gets something from it. Grrrrrr. It has decreased, so thats good. I think he only did it a few times today. Add this to the list of things we are keeping an eye on.

School: I never did write a separate post detailing AJ's IEP review meeting and parent/teacher conferences. Our IEP review meeting went well. One change was made to his IEP: AJ needs 1:1 instruction at all times. Best of all: His IEP allows him to attend Lowell until June of 2010. Ironically, Jeremy and I were thrilled with this news. We were a bit concerned we'd have to meet every quarter and have the same anxiety three more times. Other's didn't seem so excited. There is no "pass" that will just allow AJ to continue attending Lowell. Actually, there is. It's called MOVE TO WAUKESHA. At least four other kiddos and their families in the TC and AO programs at Lowell have moved to Waukesha from other school districts to make sure their child can attend this program. IT IS WELL WORTH IT.

Our parent teacher conference was helpful. AJ's school SLP, PT, and OT were kind enough to attend our conference with AJ's teacher. We left with many strategies/ideas/activities to help bridge AJ's learning at school to home. I had to pinch myself that night though. Am I really a Mom, going to my son's first parent teacher conference? I guess so.

AJ seems to be paying more attention to his peers. He's doing something new every day. Transitions from activity to activity have once again become difficult. We are working on strategies with the school team to make these transitions smoother again. I am so thankful his team at school is patient, kind, and understanding. Although it is hard to hear he had a bad day, it is reassuring to know that he is with a team that will wipe the slate clean and start anew the following day.

Feeding/Speech Therapy: We have another follow-up appointment next week at the GI Clinic. My stomach is already in knots. Not only just because its another weight check, but because he had ear infections, which caused a lack of regular appetite and liquid intake for a few days. I'm not going to lie, I am genuinely freaked out this time. We are waiting on the report to be written regarding the results and recommendations per his swallow study in early November. Once we receive an OK from insurance, we'll beginning feeding therapy again. Currently, I'm considering buying stock in Z-Vibe batteries.

Social/Emotional/Cognitive/Language: As I mentioned above, AJ is paying more attention to his peers. He knows what walking down the hall means at school-time to go to the doors and go outside to find Mommy. He made the connection between a soft-plush vibrating turtle and Daddy's XBOX-they both have a vibration so he put the turtle on top of the XBOX. He knows the auditory cue for "sit down". He has signed "eat", "please", and "bath" (approximation sign). He is playing with his voice. His memory skills improve daily. He knows both how to wash his hands at the sink and how to wipe his hands off on a wet towel. He holds his hands up for a dry towel when you tell him "all done" with washing hands. AJ's emotional responses have become different, with more variety. He understands the auditory cue "ah ah ahhhh^hhhh" (You know, when you reach for the hot stove and your Mom would say "ah ah ahhhh^hhhh"?? That.) That amazes me, as its not even a true "word" cue.

I'm sure there is more that I am missing. Let's face it, these days, my brain is a fuzzy blur. But I think thas enough paragraphs to supply the jist.

This time of year is always hard. It sort of hit me unexpectedly this time around though. AJ was diagnosed with bilateral profound hearing loss on 11/28/07 and cerebral palsy on 12/5/07. Two years ago, my Dad passed away shortly after that neurology appointment when we received the CP diagnosis. I found myself crying over cheeseburgers while driving AJ to school last week. You'd have to know my Dad to understand that last sentence. I wish my Dad was here to giggle at my perfectionism, tell me to keep things simple, and reassure me that everything was going to be OK. He was so good at that. That whole period in our lives is so vivid yet so out of focus. An intense blur. We all made it through, somehow, as I'm sure we'll make it through these anniversaries. Not much to celebrate per se, but certainly memorable moments in our lives.