God sized things...!

December 13, 2011

Hey all...
I can't even begin to write into words right now how overwhelmed with joy and amazement I am, but I'm going to attempt to because I've been too emotional to talk anymore and you all need to be rejoicing with us!!!  Tonight, at 7pm, I got a call from Kai's geneticist at Duke.  She started off by saying they hadn't been able to get a very clear picture of his brain during his MRI last Friday, as he had started to get very anxious when they got to that part and he freaked out a bit.  (in case you hadn't already heard, Kai had a major MRI Friday at Duke, and they weren't able to fully sedate him because he had eaten that morning and they had forgotten to tell me not to feed him, so he had to be in the pediatric MRI tunnel, which is 1/2 the size of a regular one, for over an hr with just valium to calm him...yeah, wasn't too pretty after 1/2 hr, so they had me climb into the tube WITH Kai for the remaining 30 min of the scan!!!  Yep...talk about a TIGHT squeeze and claustrophobia!!).  Anyways...that's besides the point.  The dr continued to say that they WERE able to get a good picture of his entire spine during the first 1/2 hr though, and they were able to clearly see the areas that they needed to see in order to see if he had the abnormalities in his cervical spine that were "necessary" to put the label of Ataxia Telangiectasia...and PRAISE GOD!!!!!!!!!!  There were NO abnormalities, so they have officially ruled out AT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  You can't even begin to imagine our relief and thanksgiving right now for a total miracle!!!  I truly believe this is a miracle too, as if you look it up on google, Kai fits the definition of the disease and the majority of his specialists were convinced this is what he had.  But God.....   I am way too emotional to talk right now, but I can't say thank you enough for all your prayers and encouragement this far.  The journey is far from over, but we'll take it one day at a time, one miracle at a time.  I wish I could begin to explain to you how much this means to us, and especially coming today.  We have had an incredibly tough past 3 days with Kai, as he seems to be completely "off" in his balance, falling CONSTANTLY, dropping everything, unable to sit at the table without falling off the chair, falling and sending bowls of cereal (full) flying all over the kitchen, and on and on.  Not to mention the anxiety of surgery this week Thursday.  I had just run with a friend this morning and cried the whole run telling her how I just didn't get why God was allowing all this and that I couldn't take it anymore.  I needed answers.  As I wept, she told me to go back and read Hebrews 12 and know that God gave me this race, and He already had it marked for me but my job was to get in His word and read the map and let Him do the rest as I left my cares at His feet.  I was reminded of all the people who God used because of their faith...something which I lack SO much of.  I'm so glad all God requires is that of a mustard seed :)  Sometimes, I don't think I have even that, but I'm so thankful for each of you, who have prayed with faith on our behalf.
Like I said...the journey is FAR from over.  Essentially, this puts us back to square 1 with a diagnosis.  They do know Kai has some form of Ataxia, but they are unsure of the specific type.  And he WILL have surgery this week Thursday.  They feel pretty strongly it's more important now than ever, as it will give us a much closer look at his muscles and what's going on with them, and hopefully point us in some direction of a diagnosis.  They are strongly feeling it's some form of mitochondrial disease, but no idea what form, as there are 1000s.  Please continue to pray for both him, for us, and for the wisdom of his HUGE team of doctors.  Please pray especially on Thursday, as he will go into surgery and have 2 biopsies done...1 as a fresh sample they will examine under microscope immediately, and another that they will flash freeze and examine later for more information.  It's a pretty major surgery for him because of his Ataxia.  His heart poses a threat when put completely under, as it can also become Ataxic and as you can imagine that would cause major problems.  They will have a BIG team of anesthesiologists in the operating room with him because of the threat, and quite a few extra hands in there with the surgeon as well, but please just pray for Kai, for his body, for healing in miraculous ways, for our strength and patience in all of this, and for his doctors to see God glorified in all of this.  Thank you in advance!!
With tearful thanks and overwhelming joy....
xoxo