What doesn't kill you makes you stronger

That is so cliche (and a very popular Kelly Clarkson song) but the absolute truth!  Today, October 1 marks the three-year anniversary of finding out about Zoe having spina bifida.  I was about sixteen weeks pregnant going in for my sonogram to find out if we were having a boy or a girl.  The first tech saw the hydrocephalus (water on the brain), and the specialist we were referred to that afternoon confirmed the hydrocephalus and was able to see the hole in her spine.  The rest is history.

In the last three years, I have learned more about life than the first twenty-seven.  I have learned to say (and spell!) the word myelomeningocele, I learned to catheterize my child, I learned about sleep deprivation, I learned how to say "no" to people, and how to be kinder to those closest to you as well as complete strangers, I learned that when you love something so much, sometimes it just not the right timing and you have to let it go, I learned to plan a family budget and live off of one income, I learned not to afraid of a wheelchair and that they can make anything look cute these days.  I have accomplished more professionally in the last three years...I experienced teaching both middle school and high school choir, learning about the importance of community and strong families, took a choir two years to UIL and making Sweepstakes, I felt the pride in my students and all of their awards and recognition, I fell in love with high school aged kids, then I felt the pain in laying it all down.  I have started running, cooking, and volunteering more at church.  I have also learned about the importance of therapy and therapists who work with young children, I've learned about the importance of prayer warriors, I have learned how to enjoy an afternoon of crafting and finger-painting and fake tea parties and lego people, and how much fun it can be to just slow down.  Life has been a roller coaster these last three years, and I'm done just hanging on.

What I didn't realize until early this morning is the significance of October 1.  October is not just breast cancer awareness month, it's also spina bifida awareness month.  Zoe and I were on a jog together and it hit me that the anniversary of Zoe's diagnosis is also the beginning of a month of awareness, education, and support of her and others like her.

I heard a statistic recently that there are fewer cases of children being born with spina bifida now.  Sounds awesome, right?  There is also a significant increase in early detection, which is great too!  The only problem is that so many families who are confronted with the saddening news of their child's condition are aborting the pregnancy, and there are many babies just like Zoe being diagnosed prenatally before ever getting the chance to fight for their own life.  I can't tell you enough how blessed we are by our little girl.  We had many opportunities to terminate the pregnancy.  I'm so glad we chose life.  We chose to listen to our hearts.  We chose Zoe.  Interesting how Zoe's name means "life" in Greek.

Now, I just want to reiterate that I totally believe in prenatal care.  If it weren't for the technicians, the doctors, and the countless specialists we saw during my pregnancy, we would not have been as prepared emotionally or physically for the trials to come.  We are also extremely fortunate to have Dallas right in our own backyard and have access to highly qualified, world renown physicians and specialists available to us.

So take your folic acid supplements if you're trying to get pregnant, see your doctor for regular visits, and get the best prenatal care out there.  You are and always will be your child's best advocate, healthy or not.  Oh, and wear yellow to support the furthering of spina bifida awareness.

Zoe-3 months old...one of my favorite pictures!!

We are home!

We all felt great being home last night.  Zoe was asleep in the car when we left the hospital, was greeted by a warm bath, cried through the whole thing since it was torture I'm sure, then propped up in our bed on a new bean bag for the 950th showing of Tangled.  We got started on the medications, and like clockwork I got up very three hours to administer something to her so she would sleep peacefully.  We both (ha! ALL three plus the dog) got a GREAT night's sleep.

Family and friends stopped by for a little bit, and Zoe's chipper spirit was back.  Smiling, giggling, hugging, kissing, and bossing around (of course) is back in full swing.  She can't do much of anything physical yet, but I'm not expecting her to.  Dr. Swift said she would let us know when she's ready to do any of that.

We are up and relaxing this morning.  Jay headed into work for what he hopes to be a short day.  It seems like a nice cloudy day which always makes for a calm environment.  Thanks again for all of your prayers.  I wish there was a way Zoe could hug each of you because she would.  There's just nothing better than seeing your child start to feel better and function like her old self.  God has a plan for all of this, and sometimes it feels there is no rhyme or reason, but I'm constantly reminded of what was said in Isaiah 55:8-11,

"For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." "The rain and snow come down from the heavens and stay on the ground to water the earth. They cause the grain to grow, producing seed for the farmer and bread for the hungry. so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it."

Zoe finally home and huggin' on her Mama.

Bananas, Chocolate Milk, and Rapunzel...again

Pain was controlled all night and she slept like a champ.  Even through me giving her pain medicine orally, she was able to get some well deserved sleep. I woke up curled up next to her this morning, and she asked, "Mom? Want to wake?"  It was very sweet.  The doctors think she will get to go home later today. They want us to get her up and moving, but she just starts crying with the slightest adjustment so I'm pretty nervous about transporting her to the car.  We will see.

So as you can probably tell by the title, she's scarfing down a banana, munching on Cheerios, sipping on chocolate milk, and watching Tangled for the 900th time it feels like. We may venture to the playroom in a little bit and see how that goes.  I'll update you all once we're home.  Thanks for all your thoughts and prayers. We love you!

Feelin' better!

She's starting to come around!  Both Zoe and Mama got a nice 2+ hour nap this afternoon in addition to her on and off naps this morning.  She's currently enjoying a combination of goldfish and reese's pieces and sipping chocolate milk right now, excited about her visitors who are about to start trickling in.  We can't exactly reposition her yet as she's still in some great discomfort when we try but Dr. Price, Dr. Swift's partner, has assured us Zoe will let us know when she's ready.  Dr. Price is thinking we may go home tomorrow at the earliest.  Zoe will continue to want to lay around in between naps, but activity will resume soon.

Praise the Lord for a quick turn around!  Sleep definitely does a body good, and so does chocolate milk according to Zoe.

Rough Night

The doctors just came and checked on her, and they think she might go home today. That would be awesome, only if the the I.V. could come with us too. She was very uncomfortable during the night even with all the morphine, Valium, and Codine/Tylenol combo. I ended up in bed with her around 3:30 just to keep her calm and let her try to sleep. I think she would look around briefly and not be able to see me, so she would cry out, "Mama!" in her hoarse little voice. I just wish there was more I could do for her. Currently, Zoe is sipping on cold apple juice watching Toy Story. She's been sweating all night, but she yells if you take off any of her friends or blankets. She's a grrrreeeaaat patient ;)

During the night, I was praying over her sitting in her bed, and I prayed specifically for angels to just watch over her and be in this room. I specifically prayed for one to sit at the end of the bed. At that moment, I felt the presence of the Lord immediately and Zoe went to sleep instantly. She was so peaceful for a good two hours too.

My mom reminded me of a scripture this morning that was very energizing and encouraging. Isaiah 40:27-31

27 Why do you say, O Jacob, and speak, O Israel, "My way is hidden from the Lord, and my right is disregarded by my God"?
28 Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable.
29 He gives power to the faint, and to him who has no might he increases strength.
30 Even youths shall faint and be weary, and young men shall fall exhausted;
31 but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

We are open to visitors today. Zoe would love a visit from some friends. Hopefully we can get her in the wagon soon and take her for spin around the floor. She's not interested in moving right now. We are at Medical City, Room 615D. Also, Starbucks Via packets are the greatest invention ever. Besides neurosurgery of course.

Finished

When Zoe was starting to wake up, Dr. Swift came out and said, "She's a little ticked off."  We knew exactly what that meant.  She was not happy (screaming, crying, and shouting at everyone) when we first saw her in recovery, but she's finally starting to calm down and quickly approaching a well deserved nap.  I don't know who looked cuter on the tiny little hospital bed...Zoe with her Angelina Jolie lips and quivering bottom chin or Jay snuggled up tightly next to her. Leave it to Woody and Buzz to calm her down though.  Thank goodness for Disney.

We are currently in our private room and hoping to lay low for a few hours.  She's not up for much visiting at the moment.  Dr. Swift said the surgery was very successful in that they inserted the tubes for draining and didn't actually have to cut into the lamina.  He said he's never done this exact procedure on someone so tiny (glad we didn't know that ahead of time!), and it was quite difficult and took longer than expected.  Which was why we were still waiting to see her 5 1/2 hours later.  Thankful it's over.  Now for the hard part...the dreaded recovery.  The nurse informed us that she's got pain at the incision at the base of her neck, but possibly all the way down her spine as well.  Poor thing!!

Thanks for all the messages of encouragement today.  I feel like the next 24 hours will be the hardest on all of us, but God will continue to surround us with His presence and peace.

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