Saturday, March 26, 2011

A little help...

Well, actually...I could use more than a "little" help depending on who you ask:)
Anyway, if you are interested and have a few minutes to share, check out this link to Deak's Run for Hope Blog...
As always, you are awesome and we are so incredibly thankful.
Click here

Thursday, March 24, 2011

Red Letter Day

Yesterday was crazy, as if any day isn't.
Deak had kind of a nightmare experience with the sedation Friday during his MRI, and for some unknown reason, it has triggered an asthma episode reminiscent of his first year of life. 
I stopped by the mailbox on the way to pick up Deak from the bus and noticed a letter from my insurance company. I assumed it was a letter telling me something I didn't want to know, like I needed to pay extra money or they denied me for life. You know, simple catastrophes that have become somewhat commonplace in my day to day life.  I opened it and read that they had authorized something, but I carelessly disbelieved it. I don't get letters...EVER...saying my insurance will authorize anything.
I stuck the letter in my purse, grabbed Deak and rushed around for the next couple of hours to cheerleading with Ab and the pediatrician with Deak.
(A visit which I am still grieving over due his retirement announcement...I truly can't bear to think of what I will do when he is gone...but, it is deserved of an entry of its' own when I can mumble through it without losing control of my emotions).
Deak was placed on prednisone (yippee) and given x-rays to rule out aspiration and pneumonia. They were clear, thankfully and we are hopeful Deak will recover quickly. (Although I'm not sure I'll survive a five day prednisone course with this child. He already eats me out of house and home, and this morning he was climbing all over the couches by the coffee tables, laughing hysterically and acting like a hyperactive monkey.)

Needless to say, I didn't think much of it until midnight or so last night when I mentioned to Blair, "Hey, I think I got a letter from the insurance saying they'll cover Deak's growth hormone."  We kind of laughed, certain it was some sort of mix up.

Well, this morning, I opened my purse in my office and remembered the letter. I decided to call the customer service line and verify the accuracy.

Yep, it's covered.
What in the Hell?
I have fought the beastly core of medical insurance agencies for three years; I'm estimating I've been through 14 or so appeals. I've hand-written personal letters, changed pharmaceutical carriers, filled out mountains of paperwork, and prayed. 
I. am. in. shock.

We obviously will have to pay a portion of this medication each month, 10%. Which, probably doesn't sound like a lot until you discover this medication has the capability of costing over $1500/month. The money will work itself out; I am just cautiously grateful for this sudden change of heart.

This medication has changed Deakon's quality of life.  It is not about height, it's about muscle strength and myelin production in his brain. It has truly been amazing, in a mixed blessing kind of a way, because giving your child a daily shot is never fun.

But, man...with the year or two we've had...we'll take this good news and we will celebrate.

Read here, here and here to learn a little more about our story with Growth Hormone.

Hooray for my red letter day!

Sunday, March 20, 2011

Cheerios.

I love that term.
Thanks Sue Sylvester, you are awesome.

Abby loves, loves, loves cheerleading.
Honestly, in the beginning, I thought that we may only be living inside this world of insanity a year or two....um...nope, we are stuck.  Ab has declared very vibrantly and on several occasions that she will be cheering until she enters Medical School.
(I need a Sugar Daddy, but Blair says I can't have one.)

Abby and her team, Cheerz Silver, have competed in four competitions so far this season. They have placed in the top two (First once, Second twice) in 3 of them.  The only reason they didn't place within the top two in the first competition is because they did a move subjectively deemed illegal due to it's difficulty.
They are really fantastic and pretty amazing to watch.

These little bodies, especially Abby's, hold no fear.  Abby has improved by leaps and bounds this year.  She is consistently and easily completing a round off and five back handsprings on the floor, and is in the process of learning a standing tuck. 
Yep, she is eight.
Pretty amazing, right?
(Picture taken mid-yell:)





Cheerz competed in a National Competition last weekend in Salt Lake City.  It is an awesome venue, but the top two teams are required to compete twice in a "Cheer Off," which is a little intense for little people to wrap their heads around.  This competition infallibly pisses Abby off each year.  This year, they did fantastic and took second place...although the judges had thrown their arms in the air and had to take 10 minutes to announce the winner because it was so close. 

The best part of this competition was seeing our friend (and her mom), Emily. 


Emily and Abby became friends while we attended the Chromosome 18 Conference in Vegas a couple summers ago.  When I told Abby that Emily was competing in the special needs category, she paused and genuinely asked, "Why? I didn't know Emily had any special needs."

That comment was the highlight of my month.
If only all eyes were as pure.

We are heading to Anaheim in a few weeks and are excited to share Abby's first out-of-state National Cheerleading Competition with a few extra days at Disney.  This vacation has impeccable timing and has truly been tirelessly worked for. We are grateful to be able to take some time to enjoy the good stuff.

And that good stuff includes watching Abby enjoy this path she has chosen...

Tuesday, March 15, 2011

The Store.

Deak is killing me with attitude lately. Sometimes I love it, sometimes...not so much. Due to this beloved attitude, I've recently realized that I have lost whatever is left of any dignity I may have once had while out in public with him. 

It's about survival baby.

Grocery shopping is an excellent example.  If I am lucky enough to have had the time to compose a list before entering the store, this process is a simpler version of insanity (I could probably count on one hand the amount of times I've had the time to bring a list, but whatever). Regardless, the insanity still exists.
This is the primary problem - Deak hates cart stoppage. 
When I say hate, I mean hate. 
Anyone who knows Deak, knows that when he hates something the scream that inevitably follows will be life-changing, and not in the "I saw a beacon of light extend from the clouds" kind of way. In my fruitless attempt to avoid the entire grocery store experiencing this lovely gift of scream, I race around the store 'a la The Amazing Race.  I push the cart with one arm while scanning the shelves and frantically attempting, with my other arm to grab the can of beans or loaf of bread. All the while attempting to read my list and/or get my holy brain to remember the freaking reason I came to the store in the first place. 
After 3 or 4 aisles, my eyes get blurry, my right arm goes weak, and my incredible aptitude for stamina (he.he) has been lost.
That's when I break out into song.
Sometimes they are real songs, sometimes they are not. 
But, they are loud, because that's what keeps the little man happy.
The decrease in song volume is directly correlated to an increase in screaming.
I get lots of irritated darting eyes that eventually find their way to my son and his obvious differences. At that point, the look turns to pity and assumable gratitude that they aren't me. 
(I really hate those looks).
Deak will laugh, clap his hands with the always ironic, "If you're happy and you know it..." (Do you know anybody who sings that song while actually happy?), and it will buy another aisle or two.
Until THE aisle.
The one with the cereal/fruit snack/oatmeal/poptarts and Nature Valley granola bars.
Deak knows this aisle.
Deak's hands know this aisle.
And, those babies begin to take flight upon arrival.
Meaning, that I cannot under any circumstance, even for small children and the elderly....pause movement.
Because, if I pause, the arms will fling and grab and pull and I will be buying 87 packages of Dora the Explorer fruit snack bags of fun.
I know I can handle myself some sugar, but really, I don't need that many boxes.

After the final leg mad dash through the Cap'n Crunch, you may think my experience is going to come to a pleasant close.  Perhaps, you might think I may feel some relief while looking at a cart full of unnecessary items.
Wrong.
I have to pay.
And, unlike most women, I don't have the luxury (and luxury it is) of choosing to go the store during less crowded hours.  I get to go at 5:00.
Yes, 5:00.
When every single other human on this planet is at the store.
The 5:00 line is never short, and Deak's patience is never longer than 15 milliseconds.
It is quite the explosive combination.
He sees the scanner and without fail, screams the scream. The scream that says he wants to watch the scanner and hear the beeping of each item.
 (Yes, I speak scream)
He assumes I can manhandle the 6 people in front of me, plow through their carts and place him directly in front of the scanner and next to the checker, for his viewing and listening pleasure.
That doesn't often happen how he so clearly sees it in his dreams.
..Imagine that...
So, while in line, I typically sing (again) to no avail, within extremely close proximity to at least 5 sets of other's ears and I say to Deak, for the 156th time, "Bud, I am sorry. At the store we wait our turn. You will get to hear the beeps in a couple of minutes."
That usually goes over real well.
I am always tired at this point, emotionally and physically, having burned more calories during this experience than any other I will endure throughout the week.
So, he screams.
I have no choice, I have to pay for the crap, or I'll go to jail.
I have to feed my kids, or I'll go to jail.
So- the 5:00 working folk who stand beside me in line have to endure a little taste of what I lovingly refer to as, my life.

We leave the store, laugh as Deak's curly hair blows in the wind while I push the cart and make car noises, unload groceries and give lots of kisses.
I will always tell him, "Deak, you did a good job today. You are such a big boy."
Because it's always hard, and he always tries.
He squints his eyes, smiles big and often says, "MaMaMaMa, I la ya."
He is always so proud after working so hard to use his words to show his love for me.
Man, that sentence will soften my hardest of hearts.

I return the cart, breathe deeply and offer thanks that I get the opportunity to experience a world with my crazy screaming boy in it.
Even if that world involves grocery stores.

Thursday, March 10, 2011

In Between.

I remember little pieces of third grade.
Mostly, I remember that I loved my teacher, Mrs. When. I also remember I was in her husband's "group" on our school field trip to Sea World, and he allowed us to sneak into the cool non-educational shows, like "City Streets."
I also remember she got really mad at him.
It makes me laugh now...

My Abby is in third grade this year, and what a year it has been. 
She amazes me daily; sometimes with her amazing level of maturity and wit...and sometimes with her amazing ability to frustrate me down to my core.
She is good at that.

This past weekend we went to see the Justin Bieber movie with some friends and Ab was thrilled.
She had been persistent in her denial of noticing the cuteness of this boy, and had firmly stated that she "only liked his music."
That magical hair flip must have changed something deep down inside her after seeing the movie, because the portion of my weekend that did not consist of Abby walking around with her ipod earphones in, most literally consisted of conversations that sounded a lot like this:
Abby: "Mom, remember that part in the movie..."
Giggle, Giggle, Giggle...
Abby:  "Mom, I don't think Justin Bieber's cute...hehehehehehehehehehe"
...enter flushed cheeks and bright smiling eyes...
Blair kept flashing me this look that very distinctly said, "What in the hell is happening?"

On Sunday morning, I went into Abby's room and discovered that she had found a poster of JB somewhere in Maddi's room and had proceeded to tack it into her wall, right next to her cheer pictures, and in a direct eye-shot from her pillow.  I noticed, without mentioning anything to her.  I want her to feel comfortable to express who she is and what she is feeling...and her room is her chance to do so.

But, my heart stood still. 
I looked around her room.
I saw her American Girl dolls perfectly posed and ready for a meal at their table; her pet shop and squinkies organized in piles.
I then noticed her expanding pile of "chapter books" on her desk, framed pictures of her cheer leading escapades, and a pair of too expensive jeans on her floor.

I had to leave the room, as tears began to well in my eyes.
This little girl is not so little.
She is entering new stages, having new feelings, and trying her best to understand what in the world it all means.
Sometimes she wants to be 16, and sometimes she wants to be 4. 
She is stuck in between two worlds and doing her best to rummage through them.

I have felt the need to soak up this moment with her this week.  I've wanted to support her and love her and show her this new stage of "boy poster stuff" was okay and nothing to be embarrassed about.  We went to frozen yogurt and Target together on Tuesday with the premise of buying a new pair of shorts for our upcoming trip with her cheer team. 

Really, I just needed the time alone with her.

She told me how she had stood up for herself at recess and acknowledged her liking of Justin Bieber to her friends, one in particular who believes it is very uncool for anyone to disagree with her on anything. Abby was proud of the fact that she stood up for herself and did not regret it.
I am proud I have a raised a daughter with the courage to do so.

We played Ab's ipod, rocked out to "Baby" and had a wonderful time.

She even held my hand as we bought her first Justin Bieber t-shirt.
In between, she is.
In between, I wish she'd stay forever.

Wednesday, March 9, 2011

Quite Possibly...

the most hysterical and most honest portrayal of life as a working mom.
...understanding that I can relate to both sides of this debate...
I'm not going to debate the pros/cons here, folks...but- if you can handle a good satire, check this out:
I wonder what this would look like if I added the whole, "I am a working mom with a child who has special needs" angle.
That one could be real funny.

Also, check out the update for Deak's Run for Hope here:
Good things are happening...

Friday, March 4, 2011

Google.

I haven't had to google issues surrounding my Deak in quite a while.
A long while.

I just remembered I hate it.

I hate it, but I need it.
I need to search and read and become a freaking one man band encyclopedia series.
I need it, but I hate it.

Damn Google.

Deak and I journeyed together for a yearly routine orthopedic visit at Shriners Hospital yesterday.  The past two year's visits had been filled with laughter and positivity, so I had no reason to assume this visit would be any different.  In fact, I anticipated going back to work an hour or so after it's scheduled time.

"Mrs. Howe, he is doing so well."
"Minimally supportive braces are all that is necessary."
"We are so pleased with his progress."

Not so much yesterday.
There were several positive comments and kind words, yet those moments were unfortunately intermingled among words like neurosurgeon and sedated MRI.
I don't like those words.

Deakon has had, since birth, what we tastefully and lovingly refer to as...a second bum hole.
Officially, a sacral dimple.
But, what it really looks like is... a second bum hole on the very bottom tip of his spine.
Over the past few months, the second bum hole has taken a new life at times.
Sometimes we laugh about it.

But, we knew.
The second bum hole had become a problem.

When Deak was three months old, our very favorite Ortho Doc noticed the dimple.
I knew it wasn't good when he called the resident doctor into our room to look.
(You learn quickly in the special needs parenting world that "looksies" never happen just for kicks)
Before I had recognized the severity, I was told that Deakon would be taken downstairs right that moment for an emergent CT scan of his spine.
What?
(Try explaining that to the 4 year old who thought she was leaving to go eat lunch in five minutes, not fun).
The CT scan done that day confirmed that Deak had some, and I quote, "funky stuff happening in his lower spine...a couple extra vertebrae..." but, there was "nothing immediately suggesting an issue, like a tethered spinal cord."
I left that day and tacked that info together with the insane amounts of information I had desperately attempted to archive somewhere inside my mind.   Hopeful, that I wouldn't need to remember the specifics.

Well, I guess I do.
Deak's Ortho has always checked the spine and noted it's relative normalcy each visit until now. During yesterday's appointment, a second doctor was brought in for consult, x-rays of the neck, spine and hips were immediately ordered and completed, and a sedated MRI is scheduled for March 18th.  The consult doctor, who was very kind, showed me a simple test he uses to determine if a child's spinal cord is tethered; Deak totally bombed it. 
After the bombed test, I kind of checked out.
I looked normal, answered questions, made comments confirming that the doctor's suspicions were most likely accurate, and I even smiled.
I stuck my heart in my pocket, and moved forward.
Numb.

Numb until now.
Until stupid google kept flashing on my screen asking me to search it.
Stupid, stupid, google.

Google says what the doctors said yesterday:
*Tethered cords tend to worsen progressively and become more noticeable when pressure is continually used on the spine. (Deak's new standing, cruising, climbing, walking stuff is undoubtedly the culprit).
*Tethered cords can cause muscle weakness and nerve damage, making usage of the lower motor extremities more difficult.
*Tethered cords are sometimes associated with a Chiari Malformation of the brain.  (This malformation happens to be in the almost exact same spot that Deakon's pre-term tumor reared its' ugly head).
*Tethered cords symptomatically effect people very differently and on a continuum. The lesser of which do not require any management, but most of which require neuro-spinal surgery.  The surgery is necessary to relieve pressure on the nerves and presumably allow motor and other functions to thrive on a normal level.  Nerve damage can be irreversible.
*Tethered cords, although treatable...really, really suck.

I only lasted about 4 minutes on google.
I had to hold my heart close to read the stuff, and my heart hurt too badly.
I'm determined to not worry about the future, until it becomes my reality.
Until then...the heart will stay firmly planted in it's pocket.
I am cautiously hopeful the MRI will be normal.
I am completely hopeful my little guy will be okay regardless.

Nothing like a possible neuro-surgery to help one quickly get over a bull-dozed home.

Thursday, March 3, 2011

Beautiful.



Deak will gently tap his head forward touching my mouth, messaging for a kiss.
When the lights are out, and she's freshly tucked in, Abby will sweetly say, "Good night, love you."
From behind, I will feel two hands beginning to rub my shoulders while Blair genuinely asks, "How was your day?"
I feel beauty.

The way Deak smiles with his entire face.
The way Ab can smile with the corner of her lip.
The way Blair will smile only when he means it.
The crystal blue green eyes of all three.
I see beauty.

I will unknowingly watch Abby wrap her brother up into her arms, wrestle him still, and ask him "How was the bus today?", or "How is preschool going?" 
I watch Deak smile big, look up into her eyes and begin to jump in excitement.
Abby silently acknowledges that he has answered her questions and sneaks a kiss on his head before he crawls out of her arms, races to the book basket and brings back one of his favorite stories for her to read.
Inevitably, Abby will answer his request by saying, "One more, Deak."
He will clap and hop on his cute little bum with bursts of joy.
Ab will laugh.
I know beauty.

Beautiful encompasses more than physical appearance and stylish clothes.
Beautiful is confident, kind and empathetic.
Beautiful is a state of being.

We are so happy to be involved, even briefly, in a film that celebrates our family's experience with beauty and hope.
My eyes have been forever changed, thanks to Deak. 
And, thanks to Deak-we get to share that with the world.
Go to http://www.iambeauty.me/ to see the film's trailer.
Close to completion and reliant on funding, the release date has yet to be set. 
It is hopeful it will be soon.