(((hugs))) from God...

Happy Sunday, sweet Village!  As I posted earlier in the week, we are elated and grateful that it seems as though we have ruled out the initial "scary stuff," as it relates to the cause of Andrew's pneumonias and sinus infections.  He got a booster of the pneumonia vaccine (remember he didn't have adequate titers, meaning he wasn't being protected from strep infections) and he is scheduled to get an allergy test (poor little honey, that's going to be no fun... picture getting poked with 50+ needles on your back and then more on your arm), a repeat CT scan of his sinus' to make sure it's cleared up, and repeat blood work next month.  Will you please pray for wisdom for the Dr.'s and that the treatment is easy and straight forward (especially that nothing scary pops up)?  THANK YOU!!!

Grace going for a drive with Andrew's helmet on...  These two together are all kinds of crazy :-)

I just want to reiterate how much your prayers and support for Andrew means to us!  As I mentioned before, the roller coaster with Grace has become our "normal," however, when it's one of your otherwise healthy kids it literally feels like a sucker punch, knocking the wind out of you, so when God uses y'all to breathe for us when we have trouble catching our breath, it is a priceless gift.  It's all too easy to give into the temptation to think that this isn't fair, but God quickly reminds us that He is above our circumstances and if we keep our eyes focused on Him, we will get a glimpse of His glory and grace, manifest in precious life lessons and "(((hugs))) from Him".  Here are just two super special (((hugs))) from the Lord...  1) Through this most recent scare with Andrew we have had a chance to see Andrew cling to and live out his love and dependance on the Lord.  He has had to take several YUCKY tasting medications that practically make him gag every time and many of them are dosed 3 times a day (which means we have to wake him up in the middle of the night to take it), and he has had to endure MANY pokes and prods that aren't comfortable at all.  Each time he has to do something that is undesirable or scary, he will always ask if we or he can pray first, so from every time he takes his yucky medicine (he's been taking a 3 times a day, yucky medicine of some sort for almost 2 months now) to every shot/blood draw we get to hear him cling to the Lord.  At the same time, Andrew's other half (Abigail) is heart broken anytime he has to endure anything, so she too has not only prayed diligently for him, but she recruits friends, teachers (the kids have some seriously special teachers in their lives), and anyone else that will agree to pray too.  Seeing there faith lived out makes this crazy journey some sweet and is a faith builder for David and I (love how God uses little people to minister to grown up's :-).  2)  You, Village... each comment, text, pizza, or card practically brought me to tears because they each served as reminders that we are not alone on this journey. Our pastor prayed for Andrew and our family last Sunday, and through his prayer, I was reminded of just how powerful God is, not that it was a new concept for me, but God used him (our wonderful pastor) to give me a new sense of "awe" for Him (God).  Unbeknownst to me at the time, a sweet friend caught a picture of this sweet moment.  Abigail is there too, she is just covered up by Grace and I :-)...

Abigail had her last soccer game of the season on Wednesday night where she scored a goal and made a couple of plays that David and I love to relive in our minds (so bummed that I'm awful at video taping games).  We love getting to watch her turn on the jets to come from behind and run someone down who would have otherwise had a breakaway goal.  It was impossible to get a picture of Grace looking at the camera because she was too busy looking at and kissing Abigail that she didn't have time to look at me :-).

David and I had TWO date nights this week (it's rare for us to get one, let alone two back to back)!!!  One was an amazing fundraiser for The Rise School (Grace's school)!  The Rise School is seriously a little slice of heaven...  that's all!  I know that Grace agrees because every morning when we get close to school, she starts clapping and saying "SCHOOOOOOOL" with a giant smile on her face (the kind of smile where she's smiling so big, she can hardly see).  The second night was a night out with some dear friends where there might have been some karaoke involved (in lieu of our campout that got rained out).  

WARNING...  with Thanksgiving around the corner, if you see Grace eating some no bake pumpkin pie (or anything pumpkin really), DO NOT make any sudden moves that would cause her to think that you might steal some of her food because you will see "Grace the crazy banshee" come out...  keep your distance and you will see one MESSY and HAPPY child :-).

Grace is coming to give you a big (((hug))) and kiss to thank you for all of your support, Village!

Update on Andrew...

I only have a second, but I couldn't wait to update our precious Village of prayer warriors...  Once again, God has taught us/grown us so much through this roller coaster ride with Andrew's health, I can't wait to share with you all of the details when I have more time.  I have to tell you though, we tangibly felt your prayers over the weekend and today (test day), so thank you so very much for standing in the gap for us!

TO GOD BE THE GLORY, Andrew's test was not too traumatizing, it wasn't comfortable, but it wasn't super painful, it lasted less than an hour and the best news of all is that the test was NEGATIVE!!!  No cystic fibrosis!!!  

So proud of this tough guy (David took him to the zoo after his test)...

...AND we are so grateful for each of YOU!!!

Urgent prayer request...

"Hi Village, I hear that you have prayed me through some pretty scary times, so I thought I would call you and ask you to please pray for my Bubba, he is so special to me.  Here is what's going on..."

Andrew's blood test revealed that his immune system is working just fine, however, they found that his titers (antibodies that are acquired from a vaccine) for strep pneumo are low, which means that he needs to be revaccinated with a pneumococcal vaccine to protect him from the type of bugs that are the likely cause of the pneumonias.  Also, he is scheduled to get tested for allergies in mid December to figure out if poorly controlled allergies is what's creating a breeding ground for the sinus and lung infections.  Here is where the super big prayer request comes in...  his doctor wants to rule out cystic fibrosis, so he has a sweat test (the cystic fibrosis test) on Monday, the 17th, at 9:30 am, assuming they can get enough sweat from him, we should get results by Monday afternoon.  The doctor said that she was 90+% sure that he doesn't have it, but she just wants to check to rule it out.  We are trusting in God's provision, but tempted to worry about all the "what if's"... will you please pray that my Bubba doesn't have cystic fibrosis, that we (especially my mommy) can have peace as we wait for the results and turn the "what if's" to "even if's?"

Isn't my Bubba cute? 

Look at the picture of us that he drew at school this week!  Can you believe my Daddy couldn't figure out who was in the drawing?!?!  The scar on the chest and pony tail look just like me...  silly Daddy!

Thank you so much, I knew I could count on the Village that is helping raise me, my Bubba, and Tither!!!  LOVE YOU!!!

Agh! Sickies go away...

This Thursday Andrew's pediatrician wanted to see him to make sure that his pneumonia had cleared.  David took Andrew to the appointment (since I was at work) with a list of questions that I gave him in hand.  Our wonderful, amazing, and super thorough pediatrician answered all of my questions, but there were still a lot of unknowns as to the "why" behind the recurrent pneumonia, so despite him looking better, she wanted us to see an Immunologist.  God intervened and blessed us with the opportunity to get in to see the Immunologist that SAME DAY...  that kind of stuff only happens when you have a special needs kids that has had 5 open heart surgeries and is considered high risk, not our otherwise healthy kids.  On a side note, you know that you are a frequent flyer at the hospital (in need of a punch card like I've suggested before) when you are at the ER with your otherwise healthy kid (in this case it was Andrew last week) and despite being told it was a 7-8 hour wait, you hear the nurse call the name "Grace" and you jump up like you hit the lottery and are getting expedited care,  before you realize you are there with one of your other kids...  Back to the story, the Immunologist happens to have late clinic hours on Thursdays and there was a cancellation, so I was able to take Andrew late on Thursday evening and after a two and half hour appointment, we learned that his lung function is great (praise the Lord), and after a CT scan of his sinus' we quickly found the culprit of the pneumonias...  he has pansinucitis (which means every single one of his sinus pockets, canals are blocked).  Therefore, unless we clear the sinus infection he will likely continue to get pneumonia's.  We are still doing a battery of other tests to rule out any other underlying issues and to try to identify the source of the sinus problem (we are thinking and hoping that it's allergies that we can address with better maintenance therapy).  We are super-duper grateful to have some answers (and quick answers at that), however, we are still waiting on a number of blood tests, etc.  Village,  will you PLEASE pray that there isn't any serious underlying issues and that the solution will be a simple one like better allergy treatment?  This has been another big reminder that none of our kids are "ours," they are all God's and since He is perfect, good, and just, loving them (and us) more than we ever could, He can be trusted.  Therefore,  I'm practicing handing my worry over to Him whenever I feel it creep in and receive His spirit of peace in return (I have to do this minute by minute sometimes, but it's the best way for me to keep focused on Him, not my earthly fears).  As I've mentioned before, it is extra hard when we are faced with a health scare with one of our otherwise healthy kids, we expect the roller coaster with Grace, but when the big kids have something come up, it can take me out at the knees in a whole new way.

When it rains it pours, get this...  Abigail has pink eye, Grace is dealing with cold like symptoms that include spitting up (we aren't sure if she has a bug or if it's teething related and of course we are always ultra cautious about the possibility of it being heart related), I have a cold, of course Andrew feels fine, but is on various medications in an effort to clear up his crazy sinus infection, and as of me writing this tonight David is starting to feel yucky :-(.  Will you PLEASE pray for quick healing for our entire family and that if it's not too late, David would be spared from illness?  Thank you, sweet Village!  Your prayers mean so much to us all of the time, but especially right now!

Since this has become a blog post full of medical related stuff, I have a praise to share with y'all about how God is using Grace to change the way Down Syndrome children with the complex heart defects (like Grace) are treated.  Due to all of the debate and questions that Grace's case raised at our home hospital last year, they decided to look at their own data to see what their outcomes were like over the past 15 years.  One of the reasons that this data is so valuable is because it will likely provide more concrete information for parents of children like Grace to make more informed decisions about their child's care.  When we received Grace's diagnosis, we were in essence told what they were going to do for Grace despite our hesitation and uncertainty (all of the data that we had read suggested that the long term survival of the strategy they were presenting us with was very poor).  As we inquired about how many patients they had like Grace, what her prognosis would be if we moved forward with their suggested palliation, etc, there was a dance full of guesstimates and reference to ONE patient that was similar to Grace (but not very far into their treatment and the age of that child always seemed to change, so it didn't give us much comfort).  Fortunately for us, despite the huge lack of data for us to base our decision on, we knew that our all knowing Heavenly Father knew just what was best for Grace, so a lot of prayer is what guided our decision to go to Boston.  Our hope and prayer is that the findings from this new study will shape the way Dr.'s manage patients like Grace and that families feel like they are better informed and have options that would cause them to seek the Lord's leading for their kiddos.  The data that our home hospital compiled is being presented at the American Heart Association conference in Chicago next week.  Pretty cool, huh?!?!

I have done a terrible job of picture taking this week, but then again you probably aren't interested in seeing pictures of all the sickies :-).  I have to say that despite feeling pretty awful right now, Abigail and Andrew sure know how to make their momma smile... they are always in search of what they can do to bless me, so I have a ton of cards, drawings, rainbow loom bracelets, snuggles, they helped us clean up the playroom and clean out their closets (getting rid of the 3t and 4t clothes that Abigail still fits in, but are ready to be retired until Grace can wear them)...

and Andrew happened to bring home a project from school where he had to fill in what he does when he's afraid...

Needless to say, I'm grateful that the Lord uses these sweet kiddos to provide some perspective on what really matters when you feel like you can't catch a break :-).

Thanks for continuing with us and praying us through this journey, Village!  

What a difference a year makes...

Well this has been another eventful week, both good and bad…  Monday evening, Andrew started to feel a bit warm, then spiked a fever, he has continued to have a cough for weeks and his oxygen saturations were in the low 90’s.  Our threshold is pretty low after all that we went through with him 2.5 months ago with pneumonia, so I had David take him to the Dr.  They sent him for a chest X-ray and labs, sure enough…. pneumonia AGAIN (but a different location this time)!!!  We took him in for a rocephin shot (a strong antibiotic that is suppose to work quickly).  This shot didn’t help Andrew at all last time when he had pneumonia, so we were praying that it would work this time and we could stay out of the hospital.  Thankfully, the rocephin shot, an oral antibiotic, and breathing treatments have kept him out of the hospital this time (praising the Lord big time for that), now we are just interested in figuring out why he would have pneumonia twice in two and a half months.  Will you please join us in praying that there isn’t a serious underlying cause for the recurrent pneumonia, but something that can be treated easily?  

Now the good news…  Halloween a year ago was the worst day of my life (thats a pretty big statement with all that we’ve been through).  Grace’s heart had a complication arise after we returned home from her third open heart surgery in Boston.  Grace was being watched on the cardiac step down unit at our home hospital when she went downhill fast, they called the Rapid Response Team, had to emergently intubate her and send her to the ICU.  David and I felt that everyone of the medical staff at our home hospital questioned why we opted to take Grace to Boston, except for our amazing cardiologist who has always been our biggest and best advocate.  David and I fought the temptation to feel judged and question if we had not heard God correctly and made a fleshly decision for Grace’s care, as we found ourselves constantly defending our decision to the medical team that was taking care of Grace.  It felt as though everyone had given up hope on the survival of our little girl except our cardiologist (remember, the chief of surgery told us that Grace was about to be a “checkmate”)… until Halloween day when our cardiologist was suppose to have a big meeting with the chief of surgery to figure out what our options were for Grace (was it safe enough and realistic to send her back to Boston, were they willing to try any intervention here and if so what, or did they think we were out of options).  I left David and Grace at the hospital to go home to take the big kids trick or treating and wait for our cardiologist to call with the outcome of their meeting.  I clutched my phone for dear life, anxiously waiting for it to ring with our cardiologist's name on it.  It felt like it took forever for the phone to ring with the right name on the caller id, and as we were about to walk out the door to trick or treat the call came.  I could tell immediately in our cardiologist's tone of voice that for the first time, she too had lost hope for Grace, the only thing that they could offer was to undo everything Boston had done in two surgeries, which would just be buying us time.  What I was hearing didn’t seem real because it felt like we were out of options that offered any sort of long term survival (the main reason we went to Boston to begin with).  By this time, a group of us were already trick or treating and I was following behind trying to hold myself together as my wobbly knees were the only thing keeping me from crumbling to the ground in despair.  I called David and told him that I needed him to come quickly because I just needed him to hold me and help keep the kids from feeling the magnitude of the situation (I knew I could only sort of hold it together for so long).  He  rushed to my side, and in the mean time I begged God to reassure me that we heard him correctly and that He hadn’t given up on Grace.  I ran into a friend that God somehow always brings around when I need someone to hold me up or stand in the gap for me.  This friend appeared in front of me and I just about collapsed in her arms and explained what was happening.  God used her to speak into my heart when she said “God has not said that this is over and until He does we will fight for life!”  She prayed over me and told me that another mutual friend and super special family from Family Camp would be praying without ceasing for us.  It was that moment that I felt an ounce of relief and hope as I was reminded that God was still in control, not the medical professionals.  I love and appreciate medical professionals, but they are NOT God!  David joined me shortly after that and as I refocused my heart and mind back on God, He gave me another beautiful reminder that He had this and that in His strength we would get through this.  This is the beautiful scenery that He provided me with that was like water to my soul at that moment.  Most of you know the end of the story, but the next day I received a life giving phone call from the VP of my division (whom I absolutely adore as she and her family will forever be a special part of our family at work) who reassured me that they were prepared to help get Grace back to Boston, if that is what was going to save her life.  They more than held up on that promise and just days later Grace and David were medically flown back to Boston where she had two more open heart surgeries and spent two and a half months.  

Fast forward a year and by God’s grace alone, we got to trick or treat as a whole family and Grace is alive and well, not to mention she LOVED trick or treating!  We aren’t huge Halloween fans by any means, but there was something so amazing about getting to celebrate God’s goodness and provision as it shined brightly in our hearts on a day that is so often dark and scary.  I just want to remind you that no matter what you are going through, GOD IS BIGGER!

WHAT A DIFFERENCE A YEAR MAKES!!!

Our trick or treating crew...

Our little Rag Doll, Minnie Mouse, and Spider Man...

I have no idea what these crazy Daddies are suppose to be, so let's call it a hodge podge...

Grace LOVED trick or treating!!!

The most precious little besties!  Remember Abigail has the hardest time deciding what to dress up as because she's never been a dress up, make believe kind of girl.  Since her first idea of being someone with Down Syndrome wasn't a realistic option (but I do love her heart), her next idea was to be whatever her best friend, Ju Ju, was going to be...  

Even Tucker and Twinkie got in on the fun...

Grace even let me hitch a ride with her ;-)

a little post trick or treating silliness with sweet friends...

Praying you have a blessed week, sweet Village!  (((hugs)))