busybee

His spirit is strong, his arm - not so much.

My son.

The most uncooperative photograph subject to ever exist.

Just wanted a couple shots to document the busted arm...

What he lacks in photogenic qualities, he makes up for with his spirit - that is for sure.  This boy has not ONCE complained about this heavy, clunky cast or the pain of the broken arm within it.  Amazed by him, I am.  Yoda, I am not.

In other news...  My house is a disgusting display of complete disarray. (No, I am not Dr. Seuss either.)  I'm trying very hard to hold it together.  But chaos, and piles, and boxes, and empty walls, and not knowing where any of my stuff is = SHORT TEMPER AND TWITCHY.

Alyza announced to me that she was going to help me pack, and later I noticed this addition to the pile...

 

We may not know where our toothbrushes are...  But winter boots and backscratchers??  CHECK!!

the past 2 weeks.

(Let's do bullets, shall we)

In the past 2 weeks....

• I got booted from my house.
• The landlords who have been nice to me all along called me selfish and difficult.
• (All I asked them for was one extra month - during which I was going to PAY them.)
• (GOD,  WHAT A SELFISH BITCH I AM)
• (I SHOULD SERIOUSLY BE SHOT.)
• Deep breath, aaaaand we're letting go now.
• In the middle of a lovely dinner date with Jon & Angie, I got a phonecall from my ex telling me that he and the kids had been in a car accident.
• My heart stopped beating.
• Once I had been resuscitated, I was relieved to hear that everyone in the car was ok.
• Especially Gramma Pat!  (Who else will bathe the kids during Steve's weekends?)
• (Just Kidding, Steve!)
• Turned down a rental offer on a DREAM home.
• Like, it had a separate closet JUST FOR SHOES.
• A SHOE CLOSET!!!!!
• A.
• CLOSET.
• FOR.
• JUST.
• SHOES.
• (with little compartments!!)
• It wasn't the right house for us. 
• Something right will come along.
• (Lucky Panda says so.)
• Upon safely returning to New Hampshire (accident free) Keegan decided to go ahead and break his arm.
• He picked a green cast, which matched his shirt and hat.
• (I'm pretty sure he only did that to make my day.)

(Happy thoughts for a quick recovery are very appreciated!!)

That's all for now.

exclamation point

About a year ago, right here on this very blog, I wrote...

I know in my heart-of-hearts that my non-verbal little boy is not just "speech delayed."  I know it.  There is something bigger going on and it is unbelievable to me how strong that feeling is.  Every possible "diagnosis" we've heard so far has just not felt right to me, and I don't think I'm in any sort of "mommy denial" either.   I'm pretty realistic about it, no matter how hard any of it is to hear... 
 
I just want to know my boy.  EVERYTHING about him.  Even if that "everything" includes a monster in his head...  

Amazing how a whole year later, I am still on that same boat, in the same big ocean, floating along, not even a fraction of an inch closer to a shore.  ANY shore.  Freaken EASTER ISLAND for all I care, just GET US TO A SHORE ALREADY!!!
 
To back-track a bit...   A month ago, Steve & I ventured back to Dartmouth to meet with two doctors specializing in genetics.  To make a long story short, they stripped him down to his birthday-suit, and combed over his body in what I can only accurately describe as a live-autopsy as they quietly bantered back and forth about things like a prominent forehead, larger-than-normal ears, wide-set eyes, some weird thing about his eyebrows that I can't even remember.....
 
I was half-expecting them to start tapping on his belly like a cantaloupe at the grocery store.
 
When they turned around to look at us again...  They told us, basically:  "Your son has dysmorphic features, and we believe there is something going on here that could be genetic."   They made sure to make good bed-side and tell us what a sweet, good-natured boy he is.  Yeah.  They haven't seen him at dinner-time, but I digress....
 
We then took our "dysmorphic" son off to the lab where they took eight vials of blood.  This time, when the phlebotomist stuck the needle into his arm Keegan whispered "Oss, Hursh" which is Keeganese for "Ouch, hurts."  But he did not scream, or kick, or even cry.  I was absolutely amazed, and absolutely devastated at the same time.  What 3-year-old doesn't cry when a needle is shoved into his arm?  One that is a seasoned veteran, was the only answer I could come up with.
 
Funny side story...  While we were setting up a follow-up appointment, I handed Keegan the basket of stickers for him to pick one.  Neither Steve nor I was paying any attention to him, and he handed the basket back a few moments later.  Still talking with the receptionist I didn't even look down at him.  When we got out to the elevator I heard him say "oops" and I looked down to see Keegan bent over, and scrambling to pick up the 17 STICKERS he had just dropped...  17 STICKERS?!?!!?  Steve and I both laughed!  Maybe I was supposed to be a responsible parent and reprimand him, but I decided instead to let him keep all 17 stickers... 
 
Yesterday we headed back to visit this time with our neurologist.  It was a frustrating appointment that I just do not have the energy to explain, but basically since Keegan has been seizure-free for over 14 months, it's time for us to consider weaning him off the seizure meds, and seeing what happens...
 
While we were there, we received one of the 2 chromosome studies back.  It was a Microarray Chromosome Analysis which showed an abnormality (duplication to be exact) of Keegan's 12p12.1 chromosome which is overlapping some part of his BCAT1, DAD1L, and LRMP genes, also interfering with his LOC196415.  (If I had a picture of myself scratching my own head, I would insert it here.)  Because of that, A FISH analysis (Fluorescence in situ Hybridization) was completed, which was non-conclusive.  The only thing noted on the report is that the parents blood should also be studied, and that the only known syndrome with any link to that type of mutation is Pallister-Killian Syndrome.
 
To quote the neurologist  "I'm going to google it just like you are."
 
(Any wonder why I am starting to lose my faith in doctors?)
 
The other test we are waiting on results for is Fragile X Syndrome.  I'll let you do your own reading on each of those syndromes, if you're curious enough to know the realm of what lies ahead...  My office-mate and I spent some time poking around the web today, and she stumbled on some weird (AND CRAZY COMPLICATED) breakdown of the 12p chromosome, and then we both panicked and bailed out because our ears started spitting out steam.  I googled some info on Fragile X and Pallister-Killian, and cruised through the list of "symptoms" always stopping for a pause at the one that reads "mild to severe mental retardation."
 
Now.....   I don't care how retarded you are.  You could be the most mentally retarded, retarded person on the planet Retard...  But somewhere, there is a Mother that belongs to you and she is pausing on that phrase thinking "No.  Not my baby.  NOT MY BABY!!"  And she's never able to get past it.  And the moment she read those words for the first time while she researched some rare and strangely unknown disorder that you may or may not have, everything inside her came unraveled and fell completely apart.  She felt devastated.  She hurt for you all the way to the inner depths of her soul and all the wind fell out of her sails.  She wanted to hit rewind.  Close the web-browser.  Go back.  Do-over. 
 
Not my son.
 
Not my Keegan.
 
No.
 
Yet, I always come back to that gut feeling.  Not wanting there to be anything wrong with him, but knowing that something definitely is.   Knowing it is more than just delays, or Apraxia and an inability to form words.  Feeling that the seizures were SOMEONE'S way of tipping us off.  Believing in that, as batshit-insane as it may sound.  Wanting to get to the bottom of this, whatever this may be.  Wanting there to just be SOMETHING ON A LAB REPORT to point at and say "AH-HA!!  GOTCHA, SUCKER!!!"   So that we can read the case studies, and figure out what therapies work best, and give this boy a fighting chance at the best possible life he can live...
 
Keegan's Monster has been eluding us for over two years now.  And though I'll never stop, I am getting tired of chasing after it. I am so very tired of my son being a big giant question-mark.  I am ready for him to be an exclamation-point.  A really big one, in a font like IMPACT or GILL SANS ULTRA BOLD, because that is who he is.  Even with a damaged 12p12.1 - an exclamation point, all-the-same.

 

Not exactly...

Well, it's not exactly the all-american portrait of a little boy and his dog...

 

But it's the best we can do around these parts...  And I'm really not sure it gets much cuter than this!

Problematic.

You might look at this picture and see a little boy who fell asleep with a lolly-pop.

But what I see is the blatant mistreatment of a sugary delectable.  It's pretty clear to me that Keegan needs to be punished for this behavior.

I mean, what kid falls asleep MID-LOLLY-POP?

(Certainly no child of mine!)

Because, when you injure your face, you get a fish. Those are the rules.

Keegan's face got a little worse before it got better.  The bruising is mostly faded to a lovely shade of pale-yellow now (how very spring of him), but the scrapes are still looking pretty ominous. 

We got lots of stares and sideways-glances at our local Walmart yesterday while we ran our errands.  I suppose that'll happen, when it looks like your kid was attacked by Skeletor.

So, last weekend while we cleaned the basement, we found a small goldfish bowl tucked away in a dark shadowey corner.  It wasn't long before Alyza's sweet little corneas discovered it sitting on my kitchen counter, and the incessant begging began.  In the span of 6 days, I was asked to go to the pet store approximately 7.5 million times.  If you are laughing because you think I am exaggerating, you should probably stop.

I was on the cusp of caving-in to the begging.  Mostly because I am a softie, who loves spoiling her kids, but also because Alyza cleaned the living-room for this fish.  Yes, I often use housekeeping as a mechanism by which to determine the true level of her want for something.  If she will clean for it, she really wants it.  Trust me on that.

But it was Keegan who broke me down, when he pointed to the empty fish bowl and said:  "ish, eeeeese, muh?"  Spend some time deciphering that, and I guarantee you will be at the pet store buying ALL the fish you can fit in your mini-van before you can bat an eyelash.

So without further adieu...  I introduce you to Swimmy...

 

And just like that, my cats lives have meaning again....

That's gonna leave a mark...

It looks much worse in person than it does on this cell phone picture Steve snapped....  Mr. Keegan had a pretty nasty spill today.  Everyone was upset - even little Alyza who wanted desperately to tell me what had happened to her brother, but could not get the words out in between her worried tears...

All it really comes down to is that his clumsy feet got the best of him, and he ate pavement.  Literally.

Poor Dude. 

there are sounds going in!

Keegan had his 5th audio screen (to date) this morning.   

I am happy to report that although he was extremely (and uncharacteristically) NOT INTERESTED in participating in the test today, he passed with flying colors.  Yes, according to the little chirping contraptions they poked into his ears as he protested, Keegan is hearing perfectly.

Going to these hearing tests is always fun for me. It's a busy little audiology office, and they also do hearing aid adjustments. The waiting room is usually filled with elderly patients who are waiting for adjustments or new batteries, etc...  When Keegan and I walk in, you can literally see every single face light up.  He makes me smile every single day, but I love (love love love) those moments when get to share him with others...  He may not have much to say, but he certainly can win over the heart of a little-old-lady any day.

I am officially going to add hearing to the list of things Keegan is really GOOD at.  Way to go, Buddy!!

Keegan's YouTube debut...

I am almost ashamed to admit that I have spent a slightly ridiculous amount of time on YouTube trying to find videos of kids with apraxia to watch so that I can compare them to my Keegs.  Yup, I'm totally comparing like a neurotic Momma Bear.  Mostly, it is out of curiousity.  Do those other kids sound like my Keegan when they speak?  Do they move like him and bump into things and fall over constantly?  I wonder, I wonder, I wonder... 

I've been desperately trying to find a local support group so K & I can meet other kids, but I don't think there is one.  And the video's I have found are ok, but not great.  I want to HEAR the kids speaking, not just watch them be less-than-cooperative in their speech therapy sessions...   So that's part of the reason I wanted to make my own...  Who knows how many other Momma Bears there are trying to find something to compare.  Maybe K & I can help them out on their journey as we make our way on our own.

I also wanted to give Keegan something to compare himself with.  Because I think in the next few years, Keegan is going to change dramatically.  At least I am very hopeful that this will be the case.  So, I want to document it. 

So here he is, speaking on camera for the first time!  I know that to most of you it may not be the most enthralling video footage, especially since I should be shot in the head for having such an annoying voice, and Keegan's hair makes him look like he just stepped out of the forrest after being raised by a pack of disheveled goats for the past three years.  I am a big advocate of the regular haircut, K's Dad is not-so-much, and we are currently in a stand-off.  :)

However, this is actually NOT Keegan's true YouTube debut.  The following quick little cell-phone video was posted just days after his arrival to this world.  My favorite part is when the little binky starts moving at the end and his eyes get all confused.

Enjoy!

PS...  A special thank you to Jeff for graciously letting me use his video camera, and for helping me get the footage onto the internet.  On occasion, he is actually handy to have around. 

and then, there was a diagnosis.

Where to even begin...

There is good news, so I will begin there...  Keegan is not autistic.  Both doctors shared a resounding "NO" when Steve & I mentioned it as a concern.  We explained that neither of us felt it was the right diagnosis but that it had been mentioned so much over the past year that we couldn't ignore it.  Both doctors agreed, Keegan is not anywhere on that spectrum.  I'm not sure that anyone in the room knew what to do when I burst into tears, including ME.  I didn't realize that it would hit me like it did...  I just kept thinking about that lady at the grocery store, and how I had let her affect me these last few months...  But it's over now.  We can put this mountain behind us and focus on the long trail ahead.

For months now, I had been focused on something else, and had done tons of my own research.  I have a friend, a fellow Momma-Bear, with a boy much like my own...  Sarah and I exchanged a few emails over the summer about Sam, she also shared Sam's progress on her own blog.  To say that it gives me hope, is completely understated.  Sarah, thank you for your support.  I'm going to think about you and Sam any time I feel sad or frustrated... 

Keegan has (finally) been diagnosed with a severe case of verbal apraxia, and also general dyspraxia over the rest of his body.  What this means is that Keegan's brain knows that it wants to send words to his mouth, and movements to his arms and legs.  But somewhere between his brain and his body the signal gets "lost in translation" so all that can happen is a sound, and body movements that are clumsy and not executed well... 

It was explained to us that this is similar to what happens after someone experiences a stroke.  They may lose functionality with certain motor skills or in the muscles of their face/mouth, affecting their speech.  And once they have lost it, they do not ever get it back completely.  But they can strengthen the skills that they DO have through intense speech therapy and various other types of occupational and physical therapy.  Keegan's case is similar.  He may never be able to speak or move as precisely as he would like to - we will have to wait and see.  In the mean time, we have to get a plan together for vigorous therapy (more than once a week), we have to visit a geneticist, and we have to have a 24-hour EEG done...  It was also suggested to us that we also devise a plan to give Keegan alternative methods of communication, even exceeding sign-language. 

It's a strange combination of feelings that I walked away with yesterday.  Validated, knowing that my gut has been right all along.  Happy to have an answer and finally a sense of direction.  Scared about all the battles we have yet to fight with teachers and insurance companies and doctors.  Hopeful that he will continue to progress and thrive.  And, of course - absolutely devastated over the news itself. 

Here's a little snip off a website that explains it pretty well...

As a result, even though the child knows what he wants to say, he cannot say it correctly at that particular time. Sometimes he cannot even begin. Either the wrong sound comes out, or many sounds are left out all together. At that particular time, the motor plan is not accessible. These errors are not under the child's voluntary control so he often cannot correct them, even when trying his hardest. Frequently, a child will be able to produce a sound or word at one time and not be able to say is again when he wants to. A parent may hear words when the child is playing alone or when he is angry, but when asked to say the same word, he can't. This can be very frustrating for both the child and the parents.

When I think about him being stuck in a body that he can't control, it definitely feels so surreal and unfair.  I can't really do anything right now except feel sad.  Of course, I know that everything is going to be OK.  We will figure it out and we will make the absolute BEST of it all.  And above all, I am ready to fight whatever battle I have to fight to get him what he needs.  But I am still sad.  He is such a good boy.  I am swimming with questions that I know I will eventually discover answers to...  But there is only ONE question I would really like to understand...

Why?

Just Why?

If someone could explain that one, I would be happy to pull up a seat and listen for as long as you need to explain it...