Audrey Up, Up, Update

 

IMG_5388I know it’s been a while since the last Audrey update and believe it or not, that’s a good thing.  If you’ve been around these parts for very long, or you know us in “real life” (I always feel like that should be said in a dramatic, narrator’s whisper) then you’ll know that the past 4 years with our Audrey girl have been hard, to say the least.

Her health has been a constant struggle, filled with emergency room visits, hospital stays and many, MANY doctor’s appointments.  Even today, as I type we have no answers for what has happened and is continuing to happen in her body, some days I truly wonder if we ever will.

These past 6 months have been better for her.  We’ve had waves of time where she isn’t complaining of tummy pain (!), where she’s growing at a normal pace (!!) and where, dare I even say it – everything seems normal.  Up until just over a month ago, we were riding high on one of those waves and I even started to think “maybe it’s all over?”

Then she began complaining of her tummy, and most recently her back again.   We started noticing major hair loss (at least this time without bald spots!), the funky smelling pee is still there and she randomly lost 2 pounds – nooooo.

All of those things put together had us heading back to Dr. H for her scheduled 6 month blood work and a check up. Here’s where we’re at:

– It’s been months since the original referral was sent to the GI team at Children’s Hospital and we’ve yet to receive any appointment information.  Dr. H is going to call and “put the pressure on” to at the very least get an appointment date for Audrey.

– Until that appointment happens there is little that anyone can do both Dr. H and the Biochemical Disease docs at Children’s.

– While Audrey has lost weight by everyone’s scale in the past month, her charted growth is increasing at a regular rate.  Meaning that as long as she doesn’t lose any more weight, it will be ok.  We have to just keep an eye on it.

– The tests that we received the special funding for from MSP have yet to return.  Hopefully they’ll hold more answers and maybe we’ll be able to move forward with that information.  The wait time on that is unknown.

– The hair loss, pain, bruising (we’re finding odd bruising, from random things), funny smelling urine and a few other odd abnormalities have no explanation but hopefully they’ll disappear soon.  If not, maybe one of the above things will give answer to their cause.

– As always we will be doing out best to protect her from getting any major illnesses as her body doesn’t need to be taxed or put to “the test”.

Then there is this thing with her blood work, which contained THE BEST NEWS EVER – for the first time in 3 years Audrey’s hemoglobin has moved into the normal range!!  It’s just barely over the edge but it’s the first time her  body has shown signs that it’s capable of doing it’s job and making enough blood.  This is HUGE for us!  The last time it was even remotely this high was a week before she went into the hospital last year.  Praise the Lord!!

While Audrey’s other symptoms are proof that whatever’s happening in her body is still occurring her blood work gives us some peace.  If her body can get to this place, to start showing signs of healing, maybe the rest will follow suit.

Please keep praying for our girl, that she’ll heal completely.  That she’ll wake up one day and every symptom will be gone.  That I’ll never again have to sit beside her hospital bed and wonder what’s next.  That this leg of her life’s journey is over.  More importantly though, please PRAISE God with us for His faithfulness.  Through this entire journey, with both our girls we have never once felt anything less than His comfort, grace and support.

Thank you once again dear friends for all that you do.  For the love, prayer, support, emails and so much more that you’ve showered our family with.  I can never, ever express how much it has meant, and how deeply it runs.

**The photo totally doesn’t express how happy we are with Audrey’s lab results, but it’s one of my favourite.  That expression is only a tiny snippit of her goofy personality!**

 

2 thoughts on “Audrey Up, Up, Update

  1. God has indeed blessed us with that dear little girlie, with both little girlies. I praise God for His mercy and blessing in her test result and keep praying that the rest will disappear and that you can all move on into brighter days. Love always, Mom

  2. That is very good news! I think of her often and had hoped no news was good news. May all this go away and so she (and you) can enjoy life, pain free!

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