Sunday, September 26, 2010

What Happens When...

About a year ago I went to a cochlear implant information meeting.  The meeting is held twice a year by our cochlear implant team.  My main purpose for attending the meeting was to hear a pyschologist speak about children and their futures with cochlear implants. 

The meeting itself was rather interesting.  A slide presentation was given, explaining the basics of cochlear implants to the adult crowd.  The entire CI staff was on site to answer questions, and I even found myself wanting to stand up and shout "DO IT!" to those that were skeptical.  Being on the other side of the fence has its advantages. At the end of the meeting, there was a panel.  The panel was made up of adult CI users, some bilateral (2 CI's), bimodal (1 CI, 1 Hearing Aid), some unilateral (1 side) CI users, and parents of children with cochlear implants.  One of the children was with her mother at the meeting.

The "talk" given by the psychologist was only to a few parents, but I felt much more comfortable with it being a small group setting.  I learned a lot that night.  We all knew this pyschologist, as he had given our kids their psych evals that were required for cochlear implant candidacy. That night, I learned a lot about swiss cheese and how my chiild should really have at least one sibling (sometime I'll dedicate a separate post to this pyschologists "talk"). 

On the ride home, I wondered why we were never asked to be on the panel. Hmph.

Now,  after all this time, I get it.

What happens when your child isn't the poster child for cochlear implants?  What happens when they don't speak?  What happens when they don't do conditioned play (holding an object next to their ear and dropping it when they hear a sound)?  What happens when they don't communicate?  What happens when they *gasp* use signs only or *double gasp* are only able to sign a few words? What happens when you don't fit the cochlear implant success mold?

You aren't asked to speak on a panel.  You question EVERYTHING you have done with your child since his cochlear implant activation.  You cry.  A lot.  You sit in a cloud of confusion.  You endure countless tests and unexpected read the words moderate mental retardation on a lab sheet that you are certain your child's doctor never meant for you to see.  When those tests come back negative you do not feel relieved.  You feel numb.  Still numb.  Perhaps even more numb.  You did not carry your child in your womb. You were not at your child's birth.  You do not know what happened before or after.  You guess, question, and frustrate yourself to no answers because knowledge is power, isn't it?

You consider other communication modes.  And learn that something is better than nothing in the word of communication.  You begin to hear that there is a difference between vocalizations and verbal communication.  Despite knowing better, you want to fix it. Fix what?  Fix everything.  And you cry. A lot.

You internalize anger toward people you know with normal children and people you don't know with normal children.  You cry with sadness and a bit of jealousy when you read another blog with a post about another CI child's success.  You find yourself in yet another unique circumstance. You cry when a child your own child's age is running around in the park chatting up the place and your child says nothing, all while screaming bloody murder at you because you are trying your hardest to stand firm and teach him to enjoy the whole park, not just the swings.  You pray at night to hear the word "Mama" just once in your lifetime.  You hide tears when another child calls out to their parent. You pray that tomorrow he will wave bye-bye on cue, because you know he can. 

You grieve.  All over again.  You don't grieve the hearing loss.  You grieve the fact that the possiblity did not produce the ability. You grieve your child's ability to communicate.  You grieve not hearing his sweet voice.  You wonder if you will ever hear his sweet voice.  You cry.  A lot.  You do your best to own your feelings because no amount of kind words or ignorant bliss will make this all disappear. You give yourself permission to have bad days, because there are many. You grieve the hopes and dreams you had for him with this exciting thing called the cochlear implant.  You take it too fast, and then too slow, trying desperately to gasp for air as you run back and fort between strategies.  You move forward, not knowing where the hell you are going.  You do what you have to do, because apparently...this does happen.

Sunday, September 12, 2010

A Start

About a year ago, I fell in love with this old Victorian home near AJ's school.  I've always had a "thing" for Victorians, even though I know they are money pits and are truly never a finished project.  This house is still on the market and taunted me the first week of school.  I drove past it at least twice a day.  It is evident that its been empty for a while (sellers relocated) and that whomever is taking care of the lawn/yard is not doing such a hot job.  The house isn't in the best area either. I've finally fallen out of love with this house. 

Instead, we've turned our efforts towards getting this house ready for sale.  This is the longest we've ever been in a place (6 years+) and it shows.  Where does all this stuff come from?  It may sound corny, but how blessed we are to be able to say that.  I've hung curtains and curtain rods that have been in packages in my closet for months.  I've made "To Do" Lists for each room (again) and have managed to cross a few things off the list each day. 

Late last night we watched as car after car pulled up and things started disappearing from our pile on the curb.  This morning, even more things were gone.  I'm really glad someone else will actually get use out of the workout bench and elliptical (among other things).  Jeremy installed the new outside light and I'm still trying to figure out how to mount the new address plaque.  The front door is prepped for paint and the new paint color for the teeny bit of vertical aluminum siding we have has been chosen. The garage is empty except for the excess of trash bags we've compiled with all this de-cluttering going on.  The basement looks huge (again) and is shaping up nicely. 

I'm struggling the most with all of AJ's stuff.  We all know that you live differently when you sell your home.  You stage your home, sans the trampoline and sports bean bags that grace your living room floor.  As much as I'd love to tell someone "buzz off bucko", our toys are staying out, that won't help to sell our house.  In this market, it is really important to do as much as you can to sell your home.  So, I think the trampoline will go downstairs and the bean bags will be packed away. 

We decided to leave the wall color in AJ's room (light blue/white horizontal strip/sage green).  This was a difficult decision for me.  We painted the nursery neutral, because we didn't know what we were "getting". I really wanted to say goodbye to the wall colors as much as I enjoyed saying goodbye to his crib (it sat empty for so long, it created some rough memories for it was really healthy for me when we passed it on to someone in need).  In an effort to save ourselves some work, I decided to leave the paint color.  Instead, I bought a navy blue bedspread and geometric drapes on clearance.  AJ's Room: Done. 

And those sports bean bags?  Are for AJ's new basketball themed room. 

I still need to repaint the bathroom (don't EVER use flat paint in your bathroom).  I went to touch up a few spots and the paint color I got was different.  Gotta repaint.  Be careful when you go in the office closet, something might bite you.  Probably a folder full of paper.  Yikes.  I'm currently typing this on my laptop keyboard, while using the old PC monitor, with both sitting on a card table.  Oh, and the old PC itself is on the floor.  I need to see if I can pull off the rest of the pictures from mid-2007 to 2009 off and store them elsewhere.  Sidenote: I took our external hard drive that crashed in.  I finally bit the bullet.  They were not able to retrieve the data in the store, so the drive has been sent up to Appleton with hopes they can recover it there.  To the tune of $300.  Sigh. I really, really, really hope they can.  Anyhow, the guest room needs to look like a guest room, so I'm unsure of where to put the computer(s). 

Things are moving and in general, I'm feeling good about it.  It makes me cringe to think of driving another winter to and from Waukesha.  I know, there are people who drive greater distances every day.  We are trying to decrease the stress in our lives.  I am just not one of those people.  I don't feel safe.  Given our crazy weather this summer, I can only imagine what our winter will be like.  We're also looking for a neighborhood with kids and younger families.

We're getting excited looking at houses online.  It looks like there are some good options out there for us. 
We aren't the type of people that are afraid of colors on the wall or even ugly bathrooms.  We remodeled our bathroom in this house two years ago and know the process, learning the do's and dont's.  Kitchens? They need good bones.  Paint goes a long way.  Jeremy does the demo, I do the restoring (unless I'm clueless, then we hire help, we've learned!) Bring on the avocado tile and banana yellow tub and toilet.  Bring on the wallpaper and pink countertop.  We're ready. 

Well, almost.  Gotta finish getting this joint ready first.

Friday, September 10, 2010

Curves with Milk

While we were at a co-treat of PT and OT this week, AJ's PT asked what I've been seeing with AJ.  I noted difficulty walking, tripping over his feet, dragging, and trying to walk to fast. 

It is a darn good thing we got the botox in his calf.

Why is it good? 

AJ's growing.  He has been since he got the botox a month ago.  He always grows "up" before "out", so I can always tell when I'm rolling the waist of his pants and shorts, as he loses what little hips and tush he has. He usually grows slowly, which aggrivates his GI doctor but pleases both us and his PT, since it causes him less pain.  (His muscles do not stretch at the same rate his bones do, thus, PAIN).  But this time around, he's growing faster.  Faster than his normal pace.

If he hadn't had the botox he would have lost the mobility to walk.

The funny thing?  I shrugged it off.  Me!  I shrugged it off.  One because I was patting myself on the back for stopping my freak out over the botox and just went for it.  Two, because he had the botox, so we were lucky, and we can work with the challenges his growth spurt is causing.  Three, because his PT walks on water with me and I know she would never let that happen permanently.  The growing does hinder us to see how well, exactly, the botox has worked, but if its kept him mobile. t

Which brings me to the curve.

AJ's spine is changing.  If left untreated, he could have curvature of the spine.  His PT said "He WILL NOT have a curve in his spine, I WILL NOT allow it."  When she says those things (like HE WILL WALK) I know we'll be given the tools for preventing curvature and go forward.  She had to show me the change a few times before I saw it.

This did scared me, more than the walking thing. But, his PT showed me some funky back stretches to do with him, mandated massaging twice a day (which she has never ever done, she never gives me reps or whatever), and mandated Jer wrestling with him and bouncing him around with "enthusiasm".  Somehow I don't think the last two instructions will be that difficult to make happen.  Anything we can do to keep him loose and stretched out is now on our agenda.

AJ hasn't been drinking his Kid Essentials.  He's actually been drinking water.  Plain.Straight.Agua.  This is nothing short of a miracle.  That I had nothing to do with.  After finding out that AJ did drink white milk a few times at school last year, I thought it was time to make the change.  He's eating enough in his daily diet to feed a horse, or heck, maybe the whole farm. I think the "let's drink something icky and sweet multiple times a day got to him.  AND, its horrible for his already weak teeth. 

So, I checked with our GI dietician and gave her my plan of attack: whole milk with 2 TSBP Duocal mixed in, with a daily vitamin.  Much to my surprise, we got the all clear.  In case you wanted to know, whole milk is 150 cal per 8oz, each TBSP of Ducoal is 42 cal.  While we didn't reach this goal due to AJ gaining a huge amount of weight (we wish!), nonetheless, we are thrilled we no longer have to hunt for KE and can save a whole lot of money.

Preschool 2010

AJ's 2nd Year of Preschool

First Day

First Lunch
After 2nd Full Day

Thursday, September 2, 2010

Vacation Experience Book

I  made this experience book for our recent trip to Iowa. 

I filled the book with photos of:

Suitcase & Car
AJ in the car & Scenes from the Road

Grandma and Grandpa were kind enough to take pictures of themselves, as well as the outside and inside of their house so I could include them in the book.  We were able to talk about where we were going, who was going to be there, where he was going to sleep, eat, and take a bath.  I'm pretty sure the G-parents don't want photos of their house online, so you'll just have to imagine the rest of the book.

I purposely used 2" binder rings so that we can add the pictures from our actual trip to the book.

Rocks and Fish

At the very beginning of AJ's summer school sessions, his SLP asked him to sort rocks and fish.

She had foam fish similar to these:

My version:
Pkg of foam door hangers from the dollar store $1
Outline of fish printed from the Internet FREE

I found the rocks at the dollar store too $1

I also made a fish sponge for AJ to paint with.  I used a new sponge I already had and used the outline to trace and cut it out.

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