Tuesday, August 21, 2012

Back on Track (22 Months!)

Yesterday, just as I had hoped, Scarlett was back to her happy, playful self when I got to the hospital.  She was insisting on sitting up, grabbing EVERYTHING, was IV free and handling her meals and medications well.  The doctors were only partially convinced, but once they knew we only lived half an hour away, they agreed she was ready for a jailbreak.  She was discharged with just Vicodin for pain and we were home in time for lunch.  She goes back for a follow up Thursday, but finally seems to be feeling well after weeks of building pressure from a malfunctioning shunt (the problem was identified as some slight protein build-up in the valve.)

In the ER
Finally asleep after hours of screaming (sorry to all the other families in the PICU...it was our turn to be the noisy neighbor!)
Starting to feel better, as evidenced by the constant grabbing of wires.  She was particularly annoyed by the head wrap and her glowing thumb.
Mellowed out with some good drugs.
Unfortunately, she still needs a shunt.  She may always need it, she may not, but for now we have to live with it.  Shunts are notoriously difficult for some people, so we just have to hope this one is the right one for a while, and keep an eye on her.  Now that we have seen the neurological symptoms hit so violently a few times, we will be better prepared (but still freaked out!) next time.

It's amazing how quickly she has bounced back from the terror over the weekend.  She woke up this morning early, all smiles, ready to play.  She hasn't had any medication for more than 12 hours, and is right back on her regular schedule.  She is clear to go to school on Thursday, even with exposed stitches on the back of her head.  If we had to wait for her to be completely suture-free, she may never leave the house!  Her emergency backpack, extra clothes, diapers, pile of registration forms and a picture of mommy and daddy are ready to go.  

I am still waiting to hear about a job for me - it is absolute torture not knowing, but I am still pretty confident something will work out, even if it is at the last minute.

And, since we missed it...Scarlett Grace is now 22 months old!  She has lost a little weight with all this drama, down to 22 pounds, 4 ounces.  She now has a whole slew of "tricks" that she will do with us.  She waves bye-bye, claps for "Yea!", gives a tiny, gentle high-5 and, most recently, does the goofiest grin.  I really feel like she is ready to pick up more, and I think her school, where everyone signs and speaks simultaneously, will give her the push she needs.  
The goofy grin!
 She had been so sick most of this month that she hasn't wanted to play much.  However, as soon as she was feeling better yesterday, she was pushing herself from laying to sitting.  She could use the crib bars to pull her self up, too.  She can pull herself from sitting on my lap to standing at a table or the couch.  She still hates the notion of crawling, but can stay on her hands and knees sturdily.  In getting her ready for school, we had to make sure she had an appropriate chair for the tiny teaching table.  After asking every therapist and worrying about it, I decided to just give their little plastic cube seats (for "typical" kids who can sit independently)...and she was fine!  Her feet just barely graze the floor, and she can reach the table.  With just some minor modifications, she should be able to use the regular chairs with no problem - a small but meaningful win for us.

This month has not been all hospitals!  We went to Happy Hollow Park and Zoo , an amusement park for preschoolers.  Scarlett got to feed goats, pet a zebu and ride her first carousel.

She also got to go to her first Relay for Life.  It was very touching how excited everyone was to see Scarlett.  Last year we had hoped to go, but she was much too sick.  This year, three different events invited us, and we made it to one, and will go to another this weekend.  Since Scarlett was youngest survivor, the Relay team from our local Disney store put together a special present for her!  She is ready for some serious princess play.
Thanks to the "Volunt-ears" from the Disney Store for Scarlett's special gift!
 She also got the gear from the American Cancer Society, including a survivor medal.  It was very hot, so we couldn't stay too long, but Scarlett did the Survivor's lap and visited all the team booths.

Too hot for smiles.
Thank you to everyone who had a special treat for survivors!  Seeing so many survivors and supporters at the Relay really reminded me what an amazing thing she has overcome, and how lucky we are to have her with us.

22 months old means just two months until Scarlett's 2nd Birthday Blood Drive!  More details will be coming soon, but if you want to help, or have something neat we can raffle off, email me at scarlettgrace2010[at]gmail[dot]com!


Darla said...

Wow, what a lot of great news all at once! I hope things continue to get better and better. What a little sweetheart and a toughie!!

Praying for Hope said...

What a perfect, little toddler.

Jennifer said...

Im so happy to hear that she's back to her usual self -- she gave us all quite a scare!

Her grin is adorable -- a trick my 21 month old just learned this week as well :)

DANA said...

It's been a while since I have stopped by to check on Scarlett! This past year I became very ill with Lyme Disease and was undergoing IV therapy until last week because I found out I'm expecting and need to wait to finish treatment until after I deliver. Anytime things get rough I think of your sweet girl and get inspired! Give my little inspiration a high five from me! Happy 22 months to both of our baby girls! Almost 2?! We have come a long way since our days on BBC :)

Melissa said...

It is so wonderful to hear that she is feeling better!!