Thursday, January 26, 2012

Birthdays and Ultimatums: Those go together....right?

Two items of business for today.

First is a special day, people!!

Today is my youngest's 1ST BIRTHDAY.
Charlotte had a sorta rough start in life, for those who didn't know.  Here she is with her ADORING big sister the same day she was born.---------------------------------->


Think lightning only strikes once?...NEVER. At least not for me...and I have to be OK with that.  It's just reality for us.  We have a kid with's just inevitable for us to have another kid with some sort of issue.  Charlotte's issue just happened to be Tetralogy of Fallot, which is the leading cause of "blue baby syndrome".  TOF is a type of congenital heart defect that manifests with the following signs:
  1. a ventricular-septal defect: a hole between the ventricles in the heart (the lower 2 chambers), which causes red, oxygen-rich blood to mix with blue, oxygen-poor blood;
  2. an overriding aorta, meaning you've got an artery pulling the blood out of the wrong chamber (the "blue", oxygen-depleted blood) and back into circulation throughout the body;
  3. thickening of the ventricular wall of the heart, due to pressure issues; and,
  4. a narrowing (or "stenosis") of the pulmonary valve, which results in less oxygen-rich blood for the lungs.
Soooo.   At the ripe-old age of 3 days old, Charlotte moved out of the realm of being an ordinary newborn and was diagnosed with a potentially life-threatening condition. 

This, after a very ordinary pregnancy devoid of the gestational diabetes I was used to with my other two children, a short 4-hour labor, and a natural, drug-free birth. 

Now, here we were, at age 1-1/2 nursing baby and I hunkered down into a tiny, extremely noisy, 4-seat medical air transport for the 4-hour trip to Lucile Packard Children's Hospital in Stanford, California, for an unwelcome education in all things concerning open-heart surgery. 

How did I deal with the prospect of my newborn's heart being stopped and her little body being put on a machine for life support?  There are some moments as a mom when you just "turn off" and go on auto-pilot....

We sat in that hospital for a little less than 2 weeks afterwards.  The resiliency of newborns is amazing;  they heal like nothing else can.  The doctors at LPCH are pros in the truest sense of the word...but they are pros who continue to LEARN and be CURIOUS about what they do.  They were big on pain control there, explaining that the human body does not heal as it should when stressed by pain.  Welcome to the world of narcotics, little girl!  Mama could have used some!!

Charlotte healed without missing a beat.  She even healed quicker than they expected; in the end, they were trying to think of reasons to keep us in the hospital, but couldn't.  Funny how you can find blessings in the middle of crisis mode. 

Today, Charlotte turns 1 year old.  She is vivacious, hilarious, and animated.  She climbs up stairs, onto her brother's bed, and (almost) onto the couches.  She's adept at crawling and has stood all by herself a couple of times in the past week.  It's like all of this never happened.  Maybe it never did.... 

Babies with Santa's are a great thing...
especially when you've been through
a bad dream...

Now as for Mr. Nathan, what can I say?  He's improving, especially in a lot of areas on his IEP...

...except for expressive, verbal communication

He's 5 years old, and he still cannot talk.  He can communicate, but I don't know he will be able to TALK.  He needs a communication device...not velcro PECS cards with no voice.  A DEVICE that will BE HIS VOICE.  I, for one, cannot sit on my hands any longer about it.  So I've emailed the team at school and laid my cards out on the table.  I've already been through this once with another school district.  But this school district has seen the improvements in the past couple of months.  Hopefully they get on board and support us in this goal.  They've seemed quite supportive in other here's to hoping!

I don't want to have to be my own son's speech pathologist, but if I have to, I will train him on a device myself.  The only reason I can see that the school district resists granting a device is budgetary.  That simply isn't good enough for me. 

I'm awaiting the response of the team after they meet tomorrow (Friday).

So here's to birthdays and ultimatums....I'd say both are different ways of going forward.  And I like progress. :)  Happy 1st Birthday, Charlotte Rose!!!!

No comments:

Post a Comment