Quick update and prayer request...

Quick update on Grace's two appointments this week and a prayer request...

-Grace had her liver ultra sound on Wednesday and it is with great praise that the spot on her liver has shrunk substantially!  The spot is now less than the size of a dime and they are assuming that it's calcification from the TPN (Grace didn't get to eat for the first 3 weeks of her life, so to keep her body functioning they gave her whats called TPN, which is comprised mostly of dextrose/sugar) that was accidentally dumped into her liver when the central line from her umbilical cord migrated and lodged itself in her liver, dumping everything they were giving her (TPN, various medications, etc) into her liver.  The best news is that we are going to follow up with them one more time in a year and then (Lord willing) we shouldn't have to follow up with the liver specialists anymore. It's so exciting to scratch one specialty off the list, now we pray that we don't need to add any in it's place :-).

-Grace had her cardiology appointment on Friday and again we were amazed and grateful that she did great for an unseated echo (watching Clifford the Big Red Dog certainly helped)...

It is again with great praise that her cardiologist said that "her echo looked great!"  Which means that it is unchanged from the last echo 3 months ago.  I was convinced that the gradient across her valve was going to be a lot higher and that we were going to have to head to Boston soon, so when those words came out of her mouth I couldn't help but exclaim "praise the Lord!!!"  Her gradient last time was a 9 and this time was between 5-9 (so they call it a 9), which is such fantastic news.  In general, our Dr.'s in Boston say that a gradient of 12 is when they start talking about going in to dilate the valve.  I have no idea how long it will take Grace to get to a 12 (could be our next cardiology appointment or in 6-9 months or more for all we know), but we are grateful that it looks like it will at least be when the big kids are back in school, which is a blessing because it means that they will be busy and somewhat distracted from focusing on their looming fear of Grace having to go back to Boston.

Look at this big girl at her Cardiology appointment!!!

Thank you SO much for your prayers!!!

PRAYER REQUEST...  Lord willing we leave for Family Camp tomorrow (Sunday) and as I mentioned before, the enemy gets very busy just before Family Camp, this time has proven to be no different :-/.  Will you please pray that nothing gets in our way of attending and enjoying Family Camp in any way shape or form?  I have to CONSTANTLY give God the fear that someone is going to get sick or hurt just before we go or while we are there.  We truly covet your prayers, thank you!!!

For those of you not on Facebook, here is what we've been up to as we go through closets to put together outfits for "theme nights" at Family Camp...

Dressing up our Gracie Doo in everything we find!

Here is Abigail on the left (she's 3 years old there) and Grace on right (almost 3 years old)!

-the kids had their 2nd swim meet on Monday evening!  I absolutely love that there is a team photographer at every meet.  It is such a treat to see so many great shots that he gets of the kids each week.  Here are a few from this week...

Grace's sassy face...

Scariest minute of my life...

The scariest moment of my life took place on Tuesday at 7:00 pm...  Grace was eating a snack and Tucker (our 12 year old miniature schnauzer) was following her around in an attempt to sneak  a snack out of her hand as he some times does.  He is such a sweet little guy (he lets Grace do just about anything to him, including sit on him while he's laying down), when he tries to take her snacks it is a very gentle approach; however, Grace gets very upset at him when he does this.  As Grace was eating grapes, Tucker had already tried to nibble a piece out of her hand once, so she was upset and telling him to get away.  She followed me into our master bathroom in an effort to get away from him, but he followed us in there and I assured her that Tucker wouldn't come near her.  I heard her cry and when I looked at her she was bright red, mouth wide open, and silent crying, so I got down to comfort her and as I went to pick her up, her eyes rolled back, she slowly fell backward, stopped breathing, turned blue, and her body went limp.  I scooped her up, her body was like a rag doll, and began screaming for David; it was at that moment that I was convinced she was dead because she was literally lifeless.  David rushed in and began hitting her back, in case she was choking on a grape or something (remember she choked on something a few months back? requiring the Heimlich  :-/ ).  It was about that time that she regained muscle control and started to breathe again.  She cried a bit and was a little clingy after that, but by God's grace she was back to her normal self within about 10-15 minutes.  I had her do every trick I could think of (smile, raise your arms, jump, talk, obey a command, etc) to make sure she was indeed back to her normal self and she passed the test with flying colors.  After paging her pediatrician, she suggested that we take her to the ER because.... because she's Grace and we wanted to have her evaluated to make sure there wasn't anything else going on.  Five of many evidences of God's presence in this situation:

1) The big kids happened to be at my sis-in-law's house the night that this horrifying episode took place (it would have been so traumatic for them to witness).  They were attending a sports camp at her church for a couple nights.  David and I had been looking forward to some date nights (with our sweet tag along in tow...  i.e. Grace); however, Grace the date crasher had other plans :-).

 Reunited again... Grace missed her Tither and Bubba in a big way while they were at Camp Aunt Becca!

***I wrote this on Saturday and unfortunately on Saturday night it happened again, but not nearly as bad as the first time.  This time the culprit was a giant bug on the outside of the widow that Grace was sitting next to in the car (she HATES bugs).  This time Abigail and her friend were in the car with David when it happened.  Abigail tried her best to calm Grace down until David could stop the car and get in the back to help, but when she saw Grace's eyes roll back she got really scared and hid her face so she wouldn't have to see it.  In some ways, I'm glad she was able to see a more mild version happen so that we could talk to the kids more in detail and practice what role they can play to help Grace be safe during a breath holding spell.  I'm really praying that this doesn't become a new "normal."

2) The wait time at our ER can easily be 5-10 hours, however, when we walked up to the ER at about 8:00 pm, David and I wondered for a moment if they were closed because the waiting room, that is usually swarming with people, was completely empty.  We were in a room within 10 minutes of arriving.  That's unheard of (even when we play the high risk heart baby card)!!!

3)  I kept reliving in my head what had happened to Grace and could hardly control random bouts of crying because it was so scary.  Also, I hated to think that we would now have to follow up with neurology to manage seizure activity, etc.  However, with a single Facebook post, I was assured that our Village was standing in the gap for us, praying diligently for favorable results, and once again your prayers became tangible as I felt God's peace sweep over me.
4)  Every Dr. and nurse that interacted with Grace that night in the ER worked hard to win her trust and it worked, she cooperated with all them and had a great attitude about being in a scary place where she knows she is usually poked and messed with.
5)  We were elated to hear that what Grace had experienced was a "breath holding spell", not a seizure (HUGE PRAISES)!  Apparently, this can be triggered by being frightened which is what happened in Grace's case, she was worried that Tucker was coming close to her while she was sitting on the floor eating, so she began crying and sort of hyperventilated.   As they were about to deliver us our discharge paperwork at about 3:00 in the morning, I asked the Dr if he was at all concerned about her oxygen sats being in the low 80's while she was sleeping and that is what caused them to get a chest x-ray and ultimately diagnose her with pneumonia.  Had Grace not made a big statement by turning blue and passing out, we wouldn't have gone to the hospital and received the pneumonia diagnosis as early as we did (at that point the only symptom that she had was a cough).

She broke out...

  In case you have never heard of a breath holding spell (like us), here is the hand out that the hospital gave us about it.  I would especially like to draw your attention to the section titled "Treatment after attacks of breath-holding"...  you are suppose to "give your child a brief hug and go about your business."  Ummmm...  yeah, that's exactly what I did :-/.

EVERY year for the past 4 years the enemy has tried to keep us from going to Pine Cove Family Camp!  Maybe I should put it in my calendar each year, so that we are ready for the attack.  The first year we went to Family Camp we got the diagnosis of Grace's very broken heart two days before leaving.  I didn't want to go because I didn't think that I could slap a pretend smile on my face when my heart was broken inside.  Despite my desire to skip Family Camp all together, we went and to my amazement the families and camp counselors that we met there helped to mend my broken heart by praying over us and encouraging us with God's truth and love.  The next year Grace was just a few months out of her second major open heart surgery, so it seemed CrAzY to take her to Family Camp where I couldn't control the germs and we were still learning what her new "normal" was.  Last year, Grace had parainfluenza 3 which put her in the hospital for 9 days and she discharged just days before we left for Family Camp and this year, well you know the story!  Will you please, please, please pray that the attacks for this year are over and that we will be able to not only attend Family Camp (we leave a week from today), but that we would have a phenomenal, uneventful time?

-in other news...  the kids had their first swim meet this week and they did great!  It was long (5+ hours), HOT, and a blast!

 -We have LOVED watching the Women's World Cup! We especially love to cheer for the short players ;-).

PRAYER REQUESTS:  Grace has an ultrasound on her liver this week to check on a spot that has been there since the liver injury that she sustained at one week old (when her umbilical line migrated and punctured her liver, dumping everything she was receiving intravenously into her liver).  Will you please pray that her liver is completely healed and that God would get all of the glory?  Grace also has her next cardiology appointment this week.  Will you please pray that she does well for the unsedated echo, that the gradient across her mitral valve has not gone up at all and if anything has gone down, and again, that God would be glorified?

THANK YOU, Village for your fervent prayers!  We truly covet them!

This is the story of our lives :-)

Celebrations Galore...

For those of you that follow our blog regularly, thank you for sticking with us and I apologize for the brief hiatus.  We have had some pretty awesome, jam-packed weekends the past two weeks, making it almost impossible to find the time to do the many special moments justice.  Here is a quick rundown of what we've been up to...

-Abigail turned 8 years old two weeks ago!  Here is what I posted about her on Facebook on her birthday:

I can't believe that Abigail is 8 years old today (time has gone so fast) and I can't believe she's only 8 years old today (the Lord has grown her so much over the past 8 years, at times she is wise beyond her years)! There is so much that I admire about this kid (not because we are great parents, but because God is great) from her love for others (especially those with special needs) to her work ethic, and forgiving heart. I'm a better person for getting to be her mommy that's for sure. My prayer is that God would protect Abigail's sweet heart from being consumed or crushed by the "world" and that she would always find her identity and joy in Christ alone.

Abigail is the type of kid that doesn't ever ask for ANYTHING and if you ask her for gift ideas she can almost never think of anything besides... a long dress (that's the one thing she consistently thinks of) or new soccer cleats that don't have pink on them because the ones she used this season were hand-me-downs, so she didn't get to chose the color.  Since she is so low maintenance from that stand point, and doesn't like us to spend money on her unnecessarily, we racked our brains trying to think of something that we could do to bless her... She has had the same room decorations for the past 5 years and while she wouldn't ask for it on her own (even after Andrew got his room redone earlier this year) we knew she would love a new "big girl" room that is decorated with special touches, all of which I can't do because I don't have a creative or crafty bone in my body.  However, I do know the sweetest, most thoughtful, and crafty people on the planet...  our decorators (their company name is Frills)!!!  We met them when we first moved to Texas 9 years ago and they have not only decorated many houses/rooms for us over the years, but they have blessed us in countless other ways along our journey from late night texts of encouragement when I was feeling broken, missing, and worrying about Grace and David in Boston, to making sure that our big kids had extra special blessings around Christmas (as they too were missing their daddy and sissy) just to name a few.  We surprised Abigail with her new room on her birthday and she could hardly believe her eyes... I couldn't either!  I knew they were great, but her room exceeded my expectations...

 Another view of her seating area...

It has been a tradition for the past few years that for Abigail's birthday we go camping with our dear friends (which includes her best friend).  Well, we started Abigail's birthday (which fell on Sunday of Memorial weekend) just before 6:00 am with the ear piercing phone emergency alerts for a tornado warning, so we woke everyone up and ate donuts in the teeny kids bathroom (that is in the middle of the house) for about 40 minutes.  We actually had a great time hanging out in there, it just made for a very early start to the day. Due to the torrential down pour and flooding we had to change our plans at the  last minute from camping to "glamping" in a hotel room.  She still had a super special birthday with an impromptu scavenger hunt, swimming, movies, and lots of laughs.

Lots of swimming...

Scavenger hunt fun...

Yummy dinner and more time with friends...

"Glamping" ended up being a blast...

-We got to celebrate four family members birthday the following weekend, one of which was David's dad's 70th birthday.  We surprised him with a morning at Top Golf with just the grown ups and to celebrate Abigail we rented out an indoor soccer field and had a grown ups versus kids game that was a BLAST for all!  Let's just say that the 70 year old birthday boy was the MVP as he played like a 20 year old, diving for balls to running at people like a freight train.  So grateful he didn't hurt himself or anyone else (especially a kid)...  no seriously, I was praying about that the whole game!  We also got to celebrate Allen, our brother-in-law's, birthday (who has the same birthday as Abigail), as well as our nephew Caden's birthday!  It was a great celebration all around!

Team youngsters...

Team old folks...

Even Grace scored a goal...

Top Golf...

-Grace had her first gymnastics class which was such a highlight for me because it was further evidence that she is alive and thriving (there was a time when I didn't think I would ever get to see toddler Grace).

-We finally heard back from Grace's Dr.'s in Boston!  They said that the valve is definitely narrowing, but they don't think it's time to intervene yet.  Praise the Lord!  The other blessing is that in my communication back and forth with her cardiologist in Boston, I was reminded about how much he loves Grace and is committed to looking out for her and us in every way possible.  We have our next cardiology clinic appointment in two weeks where they will take another look at the gradient across her valve.  Village, will you please pray that the gradient is the same or even lower than before and that we could buy even more time until going back to Boston?  Thanks in advance our faithful prayer warriors!

-Both of the kids are on swim team, which has kept us very busy with 5-6 days a week practice, but I'm blown away by how much the kids love it, especially Andrew, because they work them hard and he is our kid that doesn't always want to push himself too hard.  In fact, another odd blessing is that this is the first sport that Andrew is better than Abigail at.  While they aren't overly competitive with each other at all, it is very apparent that Abigail can smoke him at anything that involves running (not only is he 18 months younger than her, but she's just naturally fast, so he doesn't have a chance).  They have their first swim meet tomorrow!

-The kids had their last day of school this week!  Here is what I posted on Facebook:

"So, I can't believe that I'm not at all emotional about Andrew graduating Kinder and Abigail 2nd grade. Instead, I'm blown away by God's goodness and faithfulness in hand picking the two most phenomenal and perfectly matched teachers for each of our kiddos (and really our whole family smile emoticon. What an amazing year!!!"

Seriously, these teachers have cultivated a love for learning in Abigail and Andrew, but have loved them well and ministered to them all along the way.  We are proud of Abigail for making honor roll and Andrew got the Mr. Goodbar award (Kindergardeners get "candy bar" awards) that said "You are a true gentleman!  You are a good friend, a good helper, and a good role model!"

 Abigail's sweet class (she's in the top row on the far right)...

We now officially have a 1st and 3rd grader!!!

-So, you know how hot it's been here in Texas, right?  In case you don't, it's been in the 90's and our two year old A/C unit went on strike and our house got REALLY HOT, really fast.  The service people couldn't come out for over 24 hours later, so we had to stay the night at my parents house and try to stay out of the house as much as possible because it was unbearable at 88 degrees.  We set up fans and of course, fans on the floor with a toddler named Grace had me mortified, so I had what I thought was a brilliant idea (I don't get those very often, so I'm owning this one :-).  She is used to standing on a piece of tape on the floor with her name on it at school, so I put a piece of tape with her name on it, on the floor at a safe distance from the fan and explained to her that if she wanted to stand in front of the fan she had to stand on her name.  We practiced a few times and she not only complied like a champ, but she loved it!  She would call one of our names, run to her piece of tape, stand on it and clap saying "yaaaayyyyy!"  Then she would want each of us to do it too.  

Despite the major inconvenience of not having A/C in Texas, God gave us many teachable moments throughout the process.  We got to talk abut and reflect on how blessed we are to live in this amazing country where we have so much more than we need.  We talked about how so many people in other countries don't have nearly the same comforts as we do and yet they have so much gratitude for what they do have.  In one of our efforts to stay out of our HOT house, the kids, my mom, and I went out to eat.  While we were there, I have no earthly idea how it even came up, but we ended up having an amazing 40 minute discussion about God's design for dating, marriage, and sex (all topics that we have discussed plenty of times, but they were especially engaged this time)...  yep, I said it, my 6 and 8 year old know about sex (don't worry, they know full well that they aren't suppose to talk to other kids about it :-) thanks to an amazing, VERY age appropriate curriculum called "God's Design for Sex."  We have only been through the first two books of the series so far.  Despite my best efforts to make sure that the kids used quiet voices, I can't help but wonder if a family a few tables down heard some of our conversation (the parents that is, they had a baby and toddler) and thought that I was a crazy parent, but I just couldn't miss one of those valuable "shoot the gap moments." I didn't make up the term, I heard it in a parenting training and it stuck with me :-)

What is Shooting the Gap?

A term that describes the attempt of a defensive linemen or linebacker to gain leverage and pass rush through the space or "gap" in the offensive line. 

You know those moments when your kiddos, out of nowhere, will ask a very deep/loaded question, full of teachable moments and you don't know when and if you will have their undivided attention about the very important subject again.  So, you answer their question and all those that come after until the "gap" slams closed and they go back to their silly business.  I wish I could tell you details about our conversation because you would both die laughing and be encouraged that kids can totally grasp and handle an age appropriate discussion about these important topics (it's WAY more awkward for the parents than the kids, I promise :-). It is important to us that the kids hear about these topics from a biblical perspective before they hear about it anywhere else and that it's an ongoing, evolving conversation as they get more mature.  

Now that you probably think we are the craziest parents in the world... we hope that you have a blessed week!  

Grace just wanted you to know that she's thinking about you and pondering what an amazing Village you are!  (((hugs)))