Sunday, November 9, 2014

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!  

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