Another surgery

Zoe needs to have another surgery.  Her MRI from Tuesday revealed that the surgery in January did not resolve all of the issues.  The swallowing delay and aspiration has been resolved, but the additional spinal fluid that was pooling in her spinal column has gotten significantly worse.  The Chiari decompression surgery had a less than 50% chance of correcting that problem, but we did not expect it to get worse.  Dr. Swift asked if her arm strength had weakened at all.  We haven't seen anything; however, as I mentioned in another blog post, she hasn't made any significant strides in physical therapy as of late.  He said that he didn't want to wait for her to begin showing big symptoms because that could set us back in her physical development.

She is going to have a laminectomy on September 11.  She will also have a shunt tap that day to make sure the shunt is functioning properly.  If she needs the shunt revision surgery, they will perform it at that time.  We aren't certain of the recovery time, but they said it wouldn't be as bad as the decompression surgery...I don't see how anything could be that bad!!!!  From what I understand, they will go through the back around C7 and insert a tube to drain the fluid.  This will become permanent and will function like her shunt.  We are looking at 3-4 days in the hospital again...guess we'll be getting her iPad before Christmas.  Hahaha.

Dr. Swift says kids are developing so rapidly at her age, and that Zoe's main symptom may be that she's just not developing at her full potential.  We are all about getting Zoe to her full potential, so please join us in prayer on this next adventure.

On a side note, she's been sentencing like crazy lately!  Tells people, "It's so good to see you!" and "Hi, how are you doing?!" and likes to tell people, "I'm two and she's thirty!" (pointing at me of course) She is also becoming quite my little buddy...cuddling, singing, reading, playing babies and dolls.  I swear she would sell her grandmother's soul to the devil for a stamp if she could.  (I've started giving her stamps every time she uses her "sweet voice" and does polite and helpful things.) She's also getting a walker next week.  We are hoping she starts to get interested in it in the next few months.

We will be celebrating Jay's birthday this weekend too!  It's very convenient that he gets a holiday weekend every year for his birthday.  Thanks for all your prayers and we will keep you posted.

the gralls

Water, Weirdness, and Waiting

What a fun week.......at times.  I'm officially a stay-at-home mommy now.  I felt incredibly weird and out of sorts when all of my (some of my!) friends returned to work last week.  I couldn't stop checking Facebook for all of the updates, and I also found myself checking my work e-mail...which I can still log into!!  Super weird.  I'm finally feeling like that chapter is closed though.  This is my new life, and I'm thrilled.

Zoe spent quite a bit of time in the water this week.  We went to Hawaiian Falls last night for "Special Friends Night" with Prestonwood.  She loved the water, her friends from church, and joyfully shivered her way through the lazy river and the "wavey" pool.  It's been weirdly cooler this week....quite tolerable, especially for August in Texas.  Her lips were blue and her lower lip quivered the entire time, but we loved it!  

I bought a slip n slide for five bucks yesterday....instant entertainment for about an hour.  Zoe didn't quite get the hang of it, but her awesome neighbors are trying to convince her.  

We are in a bit of a holding pattern for physical therapy.  Our assignment this week is to "back off."  She hasn't done anything new in the last two weeks so we are going to back off a week.  Turns out, our super independent, ridiculously strong willed, "spirited" and "tenacious" toddler could quite possibly show some regression if we push a little too hard.  She's not standing unless she has a couch or something to lean on, which is fine, except for she doesn't want to do it anymore.  She's OK on hands and knees or looking out the window for a couple of minutes on her knees, but that's it.  I'm getting a little frustrated, but I'm constantly reminded that it's up to her.  She has to want to do it.  

Zoe and I met a precious little girl with spina bifida this week at Scottish Rite.  She was nine.  She was in a wheelchair and she and Zoe hit it off right way.  She asked me very sweetly, "Can she walk?"  I told her she couldn't, but it was a little early to tell if she would or not.  She responded very sweetly and told me that she could a little bit, but she wasn't very good at it.  Her mom has to help her stand up in her stander.  She was so sweet and understanding and accepting about it.  Such a healthy, happy little nine-year-old.  That's all we want for Zoe.  I'll take her anyway I can get.  It doesn't mean I'll pray less or accept less...what is "less" anyway?  I'm in love with a tiny blonde with beautiful little curls, a squeaky little voice, tantrum-ing two-year-old who has her whole life ahead of her and deserves the best.  I want her to be just as accepting as this other little girl we met.  God is in control and holds her future.

So we are just waiting on Zoe to decide what she wants to do.  I have absolutely no idea where she gets  her stubborn, hard-headedness, and sensitivity (haha), but I certainly know how to handle it.  The apple does not fall far from the tree...

She discovered her love of peanut butter!  It's official -- she belongs to me now!

Eating a "big chicken" while DOG eye-balls it.

Buddies

Attempting to slip n slide, even though she didn't like it much....try again???

Her new braces (hot pink camo!!) and her first pair...she's grown so much in the last 18 months!

Sweet Megan stopping to play with Zoe between slip n slides!

Her new wheelchair gloves!

Long time no see!

We have had several big things happen back to back around here, but finally things are settling down a little bit....

There's been a big change as most of you know.  I will not be returning back to Lovejoy High School to teach this fall.  It has and will continue to be a very big adjustment for me, but it's been the best (and hardest!!) decision I've ever had to make.  When you come face to face with your reality, it always has the potential to be a little daunting.  I realized that although my heart, my talents, and my strengths are utilized best standing in front of a choir, my calling right now is to serve my family full-time.  I am very excited about this new revelation, but I've been very overwhelmed by the tug of emotions with leaving the job and people I love.  I had the perfect job, the best students, the most talented and dedicated colleagues, and a very fulfilling career ahead of me, and I chose to leave all of that behind in order to follow a different plan.  God is in control and knows exactly what He's doing.  I wouldn't have chosen everything to happen in this order, but that's not always up to us.  I will be thinking of all of my sweet friends and students as they go back to work and school in the next couple of weeks.  I love you all, and I will be here for you when you need me.  You are amazing and inspiring, and it's been an honor to work with each of you.

On the home front, we have just completed several big projects at the house!  Yard work, cleaning and organizing, then re-organizing because you're not real sure where things should go in a place you've just moved into.  We hosted our family from Florida for a few days, and Maddy was here for a visit.  Zoe now has new flooring in her room that matches most of the rest of the house!  She has the freedom to go anywhere her little heart desires in our new house and has the curiosity and mobility to get into all kinds of trouble now.

She is keeping me busy to say the least.  I look forward to Mondays and Fridays when our sweet Jenna comes to help out ( /entertain/clean/play!).  She has really blessed our family so much this year, and we are very sad to see her leave for college in a couple of weeks.  She has touched our lives in a very special way and has been with ME through thick and thin this year.  Zoe is a better person because of her giving spirit, selfless attitude, and diligence to serve those in need.  Jenna, we will miss you!!!!!!  We are also in desperate need to fill her shoes....if you know anyone 18 or older who can help us with our respite hours and doesn't mind playing with Zoe a few hours a week, let me know!!

It's August already, and things are finally slowing down just a bit.  We are learning to cook on our new Big Green Egg, going swimming......lots, adjusting to a more relaxed schedule, searching for the best Mother's-Day Out program, I'm finally running again, and we are of course praying for Zoe as always.

Here are some hi-lights from the last few weeks.

Maddy (AKA "Sissy") came for a fun visit!

We squeezed in a trip to Arkansas to stay at Reba and Johnny's lake house!  Cliff diving, swimming, and good food....Zoe especially loved cheering for everyone as we jumped off the cliff.  

Zoe had her first ice cream cone from CHICK FIL A (also known as "Chicken-Fil-Laaayyyy")
Also, Zoe's first tattoo.  Hello Kitty naturally.

Dallas Arboretum is always a hit, except for now in this heat...I think we'll wait another month of so before venturing out there again.

We loved out visit from Papa and Gramma.

Rachel came too!!!

Our first tea party with a couple of very sweet friends from down the street.

Our new floors and a big girl bed! 

Silly time right before bedtime.