Great news and not so great news

As some of you heard earlier today, we had successful MRI.  The fluid pooling in her spine is completely gone, and her back and brain look great.  The pressure is off her her neck area, and the rest of her back is "normal," for her anyway.  Dr. Swift was very pleased.  He did mention wanting an X-ray on her spine soon just to check out the curvature.  She's curving to her left more and more as she grows so he just wants a better look at that.

So the not so great news...the sleep study results.  I thought for sure they would be inconclusive as Zoe had a semi-sleepless night during the study, but they did find that Zoe has obstructive sleep apnea.  From what I am learning, there are two types of sleep apnea, central and obstructive.  Central sleep apnea is a condition in which your brain stops sending signals to the muscles that control breathing, causing you to actually stop breathing temporarily.  Obstructive sleep apnea is a condition in which the airflow pauses or decreases during breathing while you are asleep because the airway has become narrow, blocked, or floppy.

If you didn't already know, Zoe is quite the snorer.  We have to turn the monitor down to the softest volume at night and turn it away from our bed because we hear her so loudly...I'm sure she would love that I'm sharing this with the WORLD right now :)  Common problems are sleepiness and low energy during the day, unrestful nights (waking up groggy), and Dr. Swift suggests her low oxygen levels during the night may be an indication of her heart working overtime.  There are several reasons why anyone might have this type of sleep apnea, but he suspects that she either has really large tonsils (that's an easy fix, right?!) or perhaps she has a very weak or floppy throat.  There's also a procedure for that.  He's instructed us to see an ENT to get that fixed.

We have known about her throat for awhile now and how desensitized it has become.  The surgeries have helped, but not completely corrected the lack of feeling in her throat.  Throughout her feeding therapy sessions, she has become a safer eater, but her issues are not completely resolved.  Obviously, we know she's two and she's gonna be grumpy and irritated and irrational a lot of the time, but I would like to think that some of her "emotions" and "firey" attitude could be contributed to not sleeping well.  Ever.  Of course I'm sure Jay would disagree and say she's just my daughter.....hahaha

Anyway, let us know if you have any amazing or not so amazing ENTs you would recommend or not recommend :)  We have zero experience with that.

Sorry if this was TMI...

Grateful

I just wanted to brag for a moment on my sweet husband, Jay. I am so grateful for him in my life. The same guy that "forgot" to get my number the day we met was the same guy that proposed just a short 8 months later. He's the same guy who never went to a choir concert in his life until me. (Since then, he's been to more rehearsals, musicals, concerts, and musical venues than he ever anticipated.) He's the same guy who rode on many a school bus...be it a field trip to CiCi's pizza or whatever concert we were headed to.  He's the same person that has always stood up to me and other people when something is not right. He's the same guy that made me buy 3 pregnancy tests and take them ALL the day we found out I was pregnant with Zoe. He's the same man who laid there right beside me and wept with me when we received the disturbing news of Zoe's diagnosis.  The same guy who promised me "you're stuck with me" when we were told the divorce rate of special needs parents was 80%.  The same person who has literally stuck with me through the ups and downs, the highs and lows, and the good and the bad. And he has loved me unconditionally throughout my crazy career transformations. He's the same guy who makes the effort to get home early enough for dinner time with Zoe so that she can eat dinner with her whole family...just to turn around and go back to work after her bath.  Again, I just wanted to brag on him and give thanks FOR him. I couldn't have gone through the last 6 years without him.

We are also grateful for you. All of you who pray for us, love on our sweet Zoe, and help out when we need a break.

We need your thoughts and prayers...Zoe is undergoing an MRI early Monday morning.  Standard follow up procedure from her laminectomy back in September.  Unfortunately (but actually fortunately), we've always discovered the need for another surgery when we have an MRI.  We are hoping for a good (aka boring) report Monday. Love you all and have a fantastic Sunday!

Hope

We are having a wonderful time with sweet Madison while she is here in Texas.  So glad she made it, even if it was a day late!  Thankful she still got a flight and came to spend her Christmas break in Dallas.  Hoping she cherishes these times as much as we do.

I'm officially calling 2012 the "year of the unexpected."  There was absolutely nothing predictable about 2012.  From Zoe's two very significant surgeries, to selling our first house, to moving in with my parents just to move again 6 weeks later, to quitting my teaching job and beginning an adventure of being a stay-at-home mommy, to training and running a marathon, you name it, nothing was anticipated or planned on ...I'm still amazed I don't have a single grey hair yet, at least that I know of anyway.

Even just one of those events named above could send anyone into the looney-bin...glad Jay hasn't locked me up yet.  Even though we are still navigating our way around this one-income thing, even though our child hasn't decided she wants to walk yet (or is physically capable of walking), even though Jay still doesn't feel he has "arrived" at his perfect dream job just yet, God has provided everything as we have walked through this year together.  We have so much to be thankful for and SO MUCH to hope for in the upcoming years together as Team Grall.

Recently, Jay set a record for the number of hours he's logged in a week at work...drum roll please......105 hours.  Yep, that's right.  During that week, I was in and out of rehearsals and concerts, Zoe was in between baby-sitters and mother's-day-out, and Jay was in a concrete vault, ALL in the week leading up to Christmas.  We ended up one night at Toys R Us at 10:30 shopping for Zoe's Christmas presents consisting of sequin dress-up clothes, a marble maize tower thingy, and a Rapunzel tower, and had the best time...because we were together.  Our time together is so precious...whether it's 5 minutes shopping for Christmas gifts or 2 hours sipping hot chocolate.  I'm glad I ended up with someone who works hard for his family, is diligent to the Lord in his work, loves his daughters with all his heart, and still finds ways to make his wife smile.

I'm hoping that 2013 will be a little calmer; hoping we can catch our breath, for a little while at least;  hoping Zoe's transition to public schools and private therapy will be an easy one; hoping for a surgery-free year; hoping for a miracle; hoping for a family vacation; hoping (and expecting!) a few date nights along the way; hoping for my family to draw nearer to the Lord; hoping for first steps; hoping, just hoping.

Here are a few things coming up for the Gralls this year:

Zoe has a sleep study and a follow up MRI this month.  We have also started feeding therapy back up again due to several different components, mostly she's just not improving in her ability to eat.  She will be transitioning to public school for PPCD and we will be looking for a new private therapist. ECI is for children birth-three; therefore, we need to find someone between now and February 17!  We are also looking into lots of fun and new challenges for her including hippo-therapy, swim lessons, and ballet!

Jay is considering adding swimming and biking to his work out regime and might start experimenting with the triathlon.  He is also going to keep doing an awesome of job of spiritually leading his family by taking us to church and hopefully find an area of service in his "spare time."

Brooke is still figuring out this whole stay-at-home mommy thingy and is taking on too much of a work load (go figure!).  I'm still trying to master the art of saying no...I will hopefully have another race in my near future after a quick visit to the doctor to have my foot looked at.

Maddy is being "confirmed" this year in the Catholic church!  So she has a very big March.  She will also start high school in the fall.  She's still interested in continuing soccer and tennis.

Thank you for keeping up with us and for all of your prayers!  Happy new year to you and yours.  Enjoy 2013.

Did all of this really happen in just a month?

I'd like to take a moment and update you about the last few (5 to be exact!) weeks, but I think an update in pictures would be just fine...

Had a lovely week with Jay's parents here during the week of Thanksgiving;

Hosted our very first Thanksgiving with the family;

Visited Santa Claus and told him her "secret" wish for Christmas (haha that's a good story)...Still TBD;

Watched LOTS of Gift of Christmas :)

Visited Aunt Beffy and Christina and wore silly hats at Lovejoy;

Giggled a lot and saw lots of Christmas trees;

Ate LOTS of cupcakes;

Spent lots of time with sweet friends;

More sweet friends at church;

Sang lots of Christmas songs..."Frosty the Snowman" in particular;

Went to work with Mommy and wore lots of silly things;

Ran a marathon;

Gift of Christmas;

Wore lots of pigtails;

Spent time with my favorite person in the world besides Daddy, Beffy;

Saw the Nutcracker with Gramma and Papa;

Visited the beautifully decorated Gaylord;

Saw Choo-Choos with Papa;

Opened Christmas presents from Santa;

Found a temporary replacement (a very LARGE, blonde, girl version) for the Baby Jesus who got lost at some point;

Declared her fairy wings were not fairy wings at all, but ANGEL wings;

Got matching pajamas;

Swam in the snow with our cousins.

We have done quite a bit of first's as you can tell!  We are still waiting on "Sissy"(Madison) whose flight just got canceled today.  She will be here tomorrow night now instead of today, so the next 10 days should be more partying, hanging out, vacation days for Jay, and resting. For now, Merry Christmas and more updates to come later!

Philippians 4:13

"I can do all things through Him who strengthens me."

I'm finding a lot of comfort in this verse tonight, for both me and for Zoe.  We received news from a doctor today that Zoe will never walk.  We were informed that Zoe will be in a wheelchair for the rest of her life and we need plan accordingly.  We saw an X-ray and it confirmed what the doctor had been thinking.  It's literally going to take a miracle to correct her right hip which is completely out of socket and straighten her left hip which is so tight and crooked.  The muscles in her legs are just not made to walk........all of this is "medically speaking."

We went to Scottish Rite today to have Zoe evaluated for bracing for walking.  Even though she's so young, she's been expressing a lot of interest in walking and recently started using her walker.  We are of course holding her in place while she hangs onto the handles, but she loves to play in it!  She's made so many break throughs recently...potty-ing in her Elmo potty, crawling into her bed, crawling up to windows and furniture, and we thought an evaluation would allow us to either move forward with appropriate bracing or wait a little bit longer for a future appointment with bracing.  But today we were told we need to make her as high-functioning and independent in her wheelchair as possible; that bracing was a waste of energy and only necessary for 30 minutes a day for exercise only.

I guess we shouldn't be too surprised.  I suppose we've just held our breath since the day we brought it home that she would not need this wheelchair one day!  That it would be temporary.  That it would make her equal with her little friends at church and school.  We've been so hopeful and patient, and she's just so amazing that we have all assumed she would walk!  I'm not losing hope, but it's definitely fading at the moment.  We absolutely are responding with enthusiasm for her, wanting of course to make the most independent and spunky Zoe there is, but we feel like we've been set back just a little bit, OK a lotta bit.  I just don't get it.

Thankful for all of you and your prayers.  We have so much to be thankful for, especially this week!  We are completely surrounded by wonderful family (by the way, Jay's amazing supportive and loving parents are here all this week from Florida!!) and so many friends have traveled in and made an effort to come visit Zoe!  She's blessed beyond measure.  We are blessed beyond measure.  However, if you think of it this week please lift up Team Grall as we move forward with this news.  

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.