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!

Sensy Shamrocks

AGAIN.  Someone take the food coloring away from me! 

Sensy Shamrocks

What you'll need:
Rice Crispies

Marshmallows

Butter or Margarine

Vanilla (optional)

Large Pot

9x13 pan

Spatula

Wax Paper

Non-stick cooking spray

Green food coloring

One beautiful or handsome assistant

{Rice Crispy Treats Recipe of Your Choice}

Getting Ready

Pouring in the cereal

Stirring

Using wax paper and smushing the treats into the pan 

Peeling off the wax paper

Letting it stick to our fingers (and forearms)

Noticing the difference after we sprayed our hands with cooking spray
(No longer sticking)

Shamrock Cookie Cutter

Pressing and pushing the cookie cutter down to cut our shamrocks

Voila!

By completing this crafty project, AJ worked on:

Fine Motor-Pouring in the rice cereal, stirring the sticky mixture, pressing the mixture into the pan, pushing cookie cutter down, pulling back the wax paper

Gross Motor/Balance-standing/balancing on stepstool independently, helping Mom scrap the mixture into the pan, weight bearing through shoulders/arms

Sensory- "Warm", "Sticky", "Gritty", "Gooey" texture of mixture, feeling the difference between pushing on the wax paper, pushing the mixture alone and it getting stuck on his hands, feeling of non-stick cooking spray being sprayed on his hands, different feeling when touching the mixture once again without it sticking., deep pressure from Mom's hand-over-hand guidance while pushing down on the shamrock cookie cutter

Auditory-heard me say the words "pour", "mix", "yummy", /m/, "wait", "HOT!", "sticky"
"take it off", "feel", "funny", "push", /sh/, "different", "help"
 "stir", "green", "marshmallow", "cereal", "melt", {and other words} repeatedly.

I did not have an issue with AJ on a stepstool next to me at the stove.  It created the opportunity to work on the word "HOT!" with him in a different context than telling him to wait for his oatmeal or other foods that may be too hot to eat right away during meal times.  He listened very well.  I melted the butter on low heat and thanks to a great soup pot, it didn't take long for the butter and then marshmallows to melt.  I slide it off the heat immediately and put in the vanilla and a few drops of green food coloring.  We then poured in the cereal.  I mixed most of the mixture but toward the end gave AJ the opportunity to stir.

By the time we got the mixture into the pan, it was only a tad warm.  Enter wax paper.  It wasn't until I put the wax paper on I thought the pulling off would be good for him too. I did find cheap 0.79 cent shamrock cookie cutters at Michaels.  I didn't get it because I wanted AJ to have something to push on.  I was lucky enough to find a Comfort Grip Wilton Shamrock Cookie Cutter to use.  Spent a smidge more, but it was worth it.  I don't think the cheap one would have cut through the rice crispie treat mixture.  My 9x13 pan gave me 6 shamrocks.  But the leftovers around the shamrock cut-outs are still deliciously yummy!  Oh, and the word sensy?  It is indeed, not a word.  But it is my slang for the word sensory.

Wordless Wednesday

Sunday Night Raw

Sensory Intergration Dysfunction, also called SID, is our most recent enemy.  AJ has had a remarkably bad weekend, full of sensory overload.  I haven't seen him like this since the fun hotel kiddie pool last summer.  Although, this weekend was far worse. 

The worse thing about it, is there is nothing we can do.  We all know Jer and I don't play that game.  Very Well.  Ok, not at ALL.  Nothing to do but sit and wait until he calms himself.  Sometimes it is difficult to dicipher his SID kicking in vs. a typical tantrum.  Then you feel like the worse parent ever because you got it all wrong.  It isn't a tantrum.  He can't stop.

The trigger?  Our vacuum.  While I am overjoyed to have our Dyson back in working order, it seems to be AJ's trigger.  He's always enjoyed the vacuum.  Sitting next to it, the vibration, and even the sound.  Yesterday turning it off caused a full on SID epidsode.  I mean screaming at the top of his lungs with no end in sight.  So today, we devised a strategy where I would play with AJ in his room while Dad vacuumed.  I knew he could hear the vacuum from his room, but we continued to play.  If you think I'm going to take off his coil every time we vacuum, you're crazy.  Usually "No" works, but given yesterday's episode, we thought a safe distance would be good.  I thought we should read a few books, so I went in the living room to grab his new reading bench thing (I'm so technical) and an assortment of books.  He merely saw the vacuum.  When we returned to his room his SID had started.  Yep, dumb move Mom. 

I tried to keep reading to him, keep him engaged and he.was.done.  I'd say I tried for 15 minutes before I had to let him be. I took off his implant and put him to bed. He ended up passing out in his bed about 20 minutes later.  After banging his head against the mattress-which he still does now and then to fall asleep.

He slept for three hours.  He's been taking unexpected naps a lot.  And now the SID episodes?  Something is going on.  Growing, I suspect.  He's been eating and drinking like a horse.  Seriously.  I don't know where he puts it all.  He's still teething.  I'm about ready to yank them out.  The child is almost 4.  Enough with the teething!  Its also continuing to hinder his bitting and chewing, which is bugging me.  His molars are ready to pop at any second.  But that's the thing-they don't! 

He had his left ear testing last week.  All went well.  They will submit to insurance after we meet the surgeon in late March.  Oh, but there's a catch.  One we didn't know about.  I'll get to that.

AJ also had his speech evaluation last week-on the same day as his left ear testing.  It went extremely well.  We are sitting tight until he sees the world renowned SLP this week.  Once we get her feedback, we'll be devising a plan of action.  His PT sat in with our new SLP to view his posture, etc. while eating.  30 seconds later she had Thera-band around his feet and knees to kick in his butt muscles and had his chair tipped forward.  Oh, and I'm banding him at home and tipping his chair with phone books under the two back chair legs.  He's going to need something else to sit in, I can tell already.  I'm hoping I can get them both to stop by sometime soon to look at our set-up and how we can adapt it to his needs.  I do know that they want to do VitalStim on AJ.  Great, now my kid's getting zapped.  It's really not that big a deal, its just one.more.thing.

Oh, and his eyeballs.  Earlier this week AJ's teacher sent home an "Ocular Report for Known or Suspected Visual Impairment" for his ophthalmologist to fill out.  I freaked out.  All this time we had been talking about doing certain things to help AJ visually attend better to things (example: placing a bright color of construction paper over the left side of a book so he can focus on the right side).  Never thinking it was because they were suspect of an actual visual impairment.  One.more.thing.

We had his appointment last week and his ophthalmologist took a look at his eyes.  9-months post-surgery and they still look good.  The alignment seems to be holding.  Around 1 year post-surgery is when we will really know if the alignment will hold for good.  She didn't just suggest the glasses this time, she told us to get them.  AJ is a bit near-sighted due to his astigmatism.  She didn't see anything else. Whewwwwww.  She also shared that AJ's T19 will cover his glasses.  We didn't know.  We stopped yesterday to order his glasses.  No such luck.  One kit of the Miraflex frames is shared by 9 stores, so the clerk has to order the kit, then call us to come in, then order the glasses.  Oiy.  We can go to another optical store, where they have the glasses in stock and ready for purchase, but we'd have to pay out of pocket.   Decisions.

I am sad AJ needs glasses.  Like he needs another thing on his head.  Like he needs another thing, period. Not only that, but I remember being teased as a kid-A LOT-because I had glasses.  We might be lucky though.  AJ has and continued to love any type of glasses you put on him.  From Auntie Jodi's sunglasses to the silly clown glasses we just found for his class "Circus" theme.  He cries when they fall off and wants you to put them back on immediately.  We can only hope.

Jumping back to his left ear testing appointment...I was informed that T19 is not paying for ANY 2nd (sequential) bilateral implants.  A few were approved a 2-3 years ago, but after that, T19 caught on.  Of course they won't deny quickly.  They, apparently, send back requests for more information and then take the full 60 days or more (sound familiar?!) to deny.  While we are confident our primary will approve AJ's 2nd implant, this puts even more pressure on the very idea of them approving or denying this.   It also makes us panic regarding how in blazes we are going to pay a co-pay or deductible on a surgery.  This information certainly changes things. 

Meanwhile, my fancy new Cricut broke.  Yeah, it broke.  I cut maybe 30 things with it and bam. I have no idea what happened.  I have a list of things to try from the manufacturer.  If those troubleshooting ideas don't work, I'll have to send it in to be repaired.  You're thinking warranty right?  Nope, they don't have a record of receiving my handy dandy postcard. 

We're also in the midst of trying to decide what to do with our vehicles.  Our SUV lease is coming due very soon.  It seems none of our options are going to work in our favor.  We are WAY over the allotted milaege on the lease (like several $K over), which is going to hurt us no matter what we do. 

And we're still working on moving.  We did some furniture rearranging and fixing of the dryer-again-today.   Other than that, we are becoming pro's at making more of a mess while you are cleaning things out.  With this 2nd implant stuff, and car stuff, who knows whats going to happen.  If we don't move we face another IEP with our home school district.  Which makes me anxious just thinking about it.

And yes, I miss Gram.  So much I don't even want to write about it tonight. 

I just feel raw. Stripped bare.  Raw with numbness, if that makes any sense.  Its one of those nights that is so overwhelming I can't breathe.  I can't eat.  I can't think about tomorrow.  I can't think about anything really.  I can't think about anything except that fact that it is simply too much.  When do we get to say enough is enough?  Someone just said to me, "Geez, you guys don't ever get a break."  Ya think?

We've always been good with coming up with things that we don't want to hear from people.  Yet, I could never come up with what I wanted them to say.  Until Pea's Mom and I chatted and she said, "It Sucks. I'm Sorry." And that was it.  That is what healed a little piece of my heart.

Sometimes, I don't want to hear that we're the best thing that happened to AJ.  Sometimes. I don't want to hear this was God's plan.  A lot of the time I don't want to hear God will never give you more than you can handle.  Because really, I've had enough and I've told him that several times.  Sometimes, I don't want to hear that I'm a supermom or so wonderful.  Sometimes, I want people to stop making excuses about our situation and just aknowledge reality.  A lot of the time, we don't want to hear there is reason for everything.  I believe this, to a certain point. I know there are positives.  There are also negatives.  I am thankful every day that AJ is a happy, loving, go-lucky little guy and has no idea he's different.  I am angry with how hard our situation is on Jeremy and I.  How it has changed both of us, our relationship with each other, our families, and our friends.  We're done with rush hour.  Oh how we'd love cruise control.  Just for a little while.

As if all of this wasn't raw enough...AJ picked up an infertility brochure I had sitting on the end table in the living room.  (I've been sorting through our files).  Out of all the paperwork sitting on the table, he picks that to walk around with and bring to me.  Insert massive tears. 

Another CP/CI Mom said to me that these years are the hardest, but that we'd start to see the light at the end of this very very long tunnel. 

I hope so.

Three Years Ago Today...

We met AJ for the very first time.

Read about it HERE.

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?

So Very Lucky

"Mooooon River"

My heart is aching, tears are flowing. And I suppose it was only natural that an empty house would allow me to finally feel what feels like a never-ending sadness.

My Grandma passed away peacefully on Ash Wednesday.  She went into the hospital with shortness of breath.  A day later, she suffered an unexpected heart attack that sent her lung disease into its end stage.  I am thankful beyond words that I, as well as my family, was there as she made her journey home. 

Gram was one fiesty lady.  Let me telllllll you.  I can only imagine the fun she's having with her best friend, enjoying heavenly Packer Games and no doubt "coaching" Vince Lombardi from behind the bench.  (Yes, she knew Vince Lombardi). She told the best stories, even when you heard them more than once.  She insisted on handmade pie crusts and whole cloves on the Christmas yams....not sweet potatoes!  She worked as a legal secretary for 30 years.  She was strong, determined, and firm in what she believed. She took trips all over the world, with pictures of her wearing a lei with a bare-chested mainlander and riding a camel (not on the same trip) to prove it.  She loved classic pictures (movies), cold beer on a hot summer day, and the Packers...just to name a few.  Although her health had rapidly declined over the last ten years, she kept fighting.  She was outspoken, opinionated, and did I mention fiesty?

Gram introduced me to the piano.  She was there for every recital, every school program, every choir concert, my graduation, and college graduation.  She was there when I got married, and when we stepped off the plane with our first child.  I am so very blessed to have had Gram in my life for 28 years. 

She taught me to appreciate classic pictures and classic music.  I have an odd obsession with the movie White Christmas because of her.  I knew she appreciated the time I spent caring for her over the last few years.  She understood, more than I did, when AJ's issues brought limitations to my availability. Gram was always awake on Christmas morning, drinking her coffee (and probably smoking a cigarette).  I'd run down the hallway and she'd greet me with as much excitement as my little heart had been building as I ran down that hall.  "Go wake your mother!" she'd say.  Gram often called me "Ch-Heidi" and my Mom "He-Cheri".  We knew what she meant. She'd listen to my gift of gab anytime and had a way of reassuring me that things would always be ok.  She'd make me giggle everytime she'd hum a classic tune, like "Moon River", sing all the words to "Tiny Bubbles", or run in place as she sat on the couch watching a Packer game screaming "Run, Run, Run!"

She loved little man-SO MUCH.  Thinking about the two of them together brings instant tears. The joy he brought her, is something I will forever be grateful to AJ and the big man upstairs for.  Her face LIT UP when she saw him.  When we came home with AJ, Gram was at the airport.  She couldn't get her hands on him fast enough.  Even though he was sick, she insisted on holding him.  And I am so glad she did.  Watching that video brings tears to my eyes every time.  The bond between a grandchild and their grandparent is so very special.  I should know, I'm writing this post. But the bond between this Guatemalan Miracle and his Great Grandmother was unbreakable. 

She enjoyed watching him eat (that was his thing at Great Grandma's house), and always had to make sure she had something good to munch on.  She would compliment his walking, his vocalizations, and his teeth. She would ask questions about his medical mumbo jumbo and had tears of pride in her eyes when she read my letter to the Senator when we fought for AJ's first cochlear implant.  I always thought those comments about his traits were to ignore his medical issues.  Now I've realized those things didn't matter to her, he was still her sweet "handsome dude". Perhaps I need to step back and look from Gram's point of view every now and then.

AJ knew who she was and knew how to melt her heart by walking straight into her arms. She considered getting an older refrigerator (to replace the new one she had just bought) simply because it did not have the same vibration AJ enjoyed from the the old one.  She looked forward to our twice a week visits and thoroughly enjoyed spoiling AJ in every way possible.  She's sing nursery rhymes to AJ, sometimes switching from English to German.  I remember standing in the hall sobbing as she sang "Deedle Deedle Dumpling, My Son John..." to AJ on the couch, just days after her cancer diagnosis.  She was given time to enjoy her great-grandchild.  What.a.blessing.

Just a week ago she was standing in the hall with AJ encouraging him to go potty and celebrating with him when he went.  It's hard to believe she's not here.  Its that physical presence thing.  Tomorrow will the first Sunday (minus a few) in 10 years that I have not been at my Grandma's.  I'm not sure how I'm feeling about that.  Things Change. Change is hard. Change is different.  Change is resisted and welcomed. 

Her favorite bible verse was Ecclesiastes 3.  There is a time for everything.  This was her time.  I am so.very.thankful for all of the time I was able to spend with her.  I am thankful for her nicknaming Jeremy "Dr. Schmidt", and loving my son with every fiber of her being.  I am thankful she loved me unconditionally and was always there for me. I am so incredibly sad, yet so incredibly thankful she is at peace. So I guess it is my time. Our time. To move forward.  With lots of Gram-tastic memories. 

"Love you, Gram."

I

Cold Hearts

Cold Heart "Ingredients":

Water

Heart Shaped Ice Cube Mold

Food Colors

Stir Stick

Food Coloring

One Handsome or Beautiful Assistant

Words: Water, Squeeze, Red, Pink, Purple,

Stir, Mix, Pour, Splash, Help, Cold, Brrrrr

Skills: Fine Motor (mixing/pouring), Language,

Auditory, Sensory (silicone mold)

Liquid

Ice

Red, Light Pink, and Purple Heart Ice Cubes

Another View

Someone really needs to take

the food coloring away from me!

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!