Wednesday, June 23, 2010

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"


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 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?

Friday, June 18, 2010

Get Funky

So apparently my post which included the line "Jeremy's brain gets all funky and we try to figure it out," was quite funny.  I don't disagree.  Even Jer laughed when he read it.

I'll try my best to give a brief synopsis. 

Three weeks ago, Jeremy started feeling dizzy.  His primary doctor thought it was labrinythitis.  We were told to go enjoy our long-anticipated, we-hadn't-been-away-anywhere-in-over-a-year mini vacation to our B&B just outside of Madison over Memorial Day weekend.  If it didn't subside, he'd see a neurologist the following Tuesday. 

We should have stayed home. 

After coming home on Monday, Jeremy and I spent a couple of hours in the ER, arriving home at about 2AM.  His dizziness had not subsided, but had gotten worse, so we thought better safe then sorry. His symptoms also included tingling on his right side and on the left side of his mouth.  They did a CT scan and sent him home with the diagnosis of dizziness and told him to follow up with the neurologist the next day. Helpful.  We were entertained there was a cocaine addict handcuffed to his bed in the "slot" next to us (those curtains give soooo much privacy, not) who was singing away and trying to schmooze the female staff.  We became friends with the cop who was spending his shift with the cocaine dude.  Fun times.

The following day he saw the neurologist who sent him for an MRI of his brain and spine.

The MRI showed a lesion on Jeremy's brain.  Get ready, set, go, for a mammoth race to see how many needles we can stick Jeremy with and how many procedures/tests/labs we can run.  At this point, this whole episode is being called a 'clinically isolated syndrome'.  Meaning, freak thing, that just happened.   We have the option to treat with MS drugs, or not treat.  There is no definite test for MS.  It could be a freak one time thing, or it could be the first flair up of MS. Are we having fun yet?

Regardless if it is a one time thing, the treatments could be preventative.

Mixed in all this fun was AJ's 4th Birthday Party and AJ's 2nd CI activation, which was also on our 9th wedding anniversary, AJ's school field trip and last day of school.  Whew!  I took AJ to school the day of activation, dropped off some wickedly cute cupcakes (since of course he had snack that week), came home with lunch, shoveled food into everyone's mouths, and sped off to Children's Hospital to have AJ's left implant activated. 

After the activation (which will have its own post soon, I promise) we drove to Jeremy's neurologist's office to hear the news about the "there's bad inflammation, our suggestion is to treat, here's 20lbs of literature to read, you will get better".  Jeremy didn't hear the "you will get better" part, so its a good thing I was there to give him the pep-talk/translation on the way home. His symptoms were fluctating, so that meant his brain was healing. Thats a good thing. We left the office completely drained, and drove home in rush hour, in the rain.

We cried, we laughed, we talked, all as we crawled on 43 South.  Happy Anniversary.  We grabbed subs on the way home (due to the steroids, that was the only thing that tasted good to Jer) and called it a night. 

After 2+ weeks home, Jer returned to work this week.  Which has been good for everyone.  His symptoms have decreased dramatically and he's in much better spirits.  Brain funkiness sure does mess with the mind.

I want to thank my Mom for watching AJ over our mini-vacation-gone-wrong...and then coming back hours later so I could take Jer to the ER.  Thanks to Jer's Mom for coming into town and watching AJ during the constant procedures and tests.  You both ROCK.

Another thank you to Jeremy's incredible co-workers.  While I knew this already, this situation brought on amazing kindness, understanding, and support from his entire crew.  I met co-workers who's names are mentioned often, caught up with some I hadn't seen in a while, and they all were able to see AJ.  Under the circumstances, it was wonderful to know my husband was so supported by those at his workplace.  His neurologists are literally down the hall from his office, so not only are they now his physicians, they are colleagues.  Truly awesome.

And how can we laugh about it?  Because otherwise we'll cry.  And believe you me, we've done enough of that.  Have we asked WHY?  Oh yeah.  Its not fair, we didn't need this, as my father-in-law used to say it sucks canal water. But...we can't change it, we can only move forward. One thing we learned with AJ-take things one step at a time.  This mindsight was critical to Jer's brain funkiness.  Jeremy and I keep each other in balance.  He's very laid back.  I'm more structured and gung-ho, if you will.  To see my hubby not laid back, made me out of balance.  We're just about back to 50/50...I think.  Jeremy is feeling better, and for that, we are VERY THANKFUL.

And honey, don't forget that I love you,
even if you are a bit funky....

Thursday, June 17, 2010

Pitter Patter

One of the things I love about our house is the overhang over the garage.  While hard to explain, it allows me to store all kinds of crap  place our gliding bench and chair outside and utilize them even when the weather isn't the greatest.  Before AJ came into our lives, I often sat on the bench and read a book or chatted on the phone. Now, we use the bench for things like eating popsicles, watching Daddy grill, or just sitting outside on a nice day. 

A few weeks ago we had a huge rainfall during an afternoon.  Well, we all know how my brain works. Rain?  Opportunity. Last year AJ experienced and HEARD rain for the first time at night.  This time, it was a bit different.  While we sat under the overhang, we listened to the sound of the rain and... 

Watching the rain fall on our feet:

Out came the sun:

And we played in the rain:

Monday, June 14, 2010


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.

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.

Sunday, June 13, 2010

A Novice Garden

My mom has been wanting to plant a garden on our land for quite some time.  This year, the idea sounded less frightening appealing to me so we devised a plan.

We thought about what types of plants we'd like and Mom came up with this awesome chart:

Here's our awesome neighbor who loves to
work onour land just for fun. 

He rototilled a 10x10 area for us in no time.

He even "flagged" it for us.


We planted:
3 types of lettuce
Grape, beefsteak, cherry, tomatoes
Green peppers, zucchini, cucumbers, broccoli
Snap Peas, spinach, beets
Rhubarb, watermelon
Chocolate mint, basil, chives, oregano,
Cilantro, lavender, lemon balm, parsley

We planted the garden the 3rd weekend of May, and already we had to split the beets and have some
"green" cherry tomatoes.

I am really enjoying this project.  One, because I've never done a garden before.  Two, Jeremy's grandparents used to have a gigundo garden in the same general area and I think they'd be proud we've ventured into gardening. Three, because I get to spend time with my mom.  When I was little I remember us planting flowers in the backyard in the rain.  It was so much fun!  Why I remember that I don't know (besides the fact I have the memory of an elephant), but I do know that I treasure moments like these with my Mom. 

So, not bad for a novice garden, hey?

Thursday, June 10, 2010

Mish Mosh

So...again.  Another blog absence.  'Sigh'

While I don't have time to give the whole scoop right now, here's a taste of the past few weeks:

-No AG Bell Scholarship
-New car
-Meet w/school team to pow-wow pre-IEP
-Make decisions for AJ's summer re: auditory & speech skills
-AJ vertigo
-My mom and I plant a garden
-To where orthotics or to not where orthotics
-AJ gains weight but the GI still isn't happy but is sorta happy
-Weekend getaway gone wrong
-Jeremy and I take a trip to the ER
-Jeremy's brain gets all funky and we try to figure it out
-School field trip
-AJ's 4th Birthday Party
-AJ's 2nd cochlear implant activation (left ear)
-AJ's last day of school

Which brings me to today.  Our first day of summer vacation.  Although, we're not viewing it as a vacation.  Soon...we'll be covering the events above.

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