Another Update

Today was the biggest appointment at Children’s we’ve had to date for Audrey.  The appointment today was at the Biochemical Disease Clinic and it’s the first time we’ve been see by someone who is very specialized.  I was a bag of nerves going in.

This road has been so long, there have been so many dead ends, so many (great) positive results and so very few answers.  So many times people look at Audrey, we look at Audrey and think “There’s nothing wrong with her.  She looks like a happy thriving little girl”, but then something changes.  I don’t know what it is, but something happens and the healthy looking little girl is gone and she’s replaced by one who looks & acts anything but healthy. Going into today I was afraid that it was going to be more of the same and we’d be left with yet another string of no answers.  As long as we’ve waited for today – I didn’t want to go.

In fact I’d spent the last few days throwing out my “fleece” to God, begging Him that if today wasn’t going to be productive, that if they weren’t going to say something we needed to hear that He would have the appointment be cancelled, because I’m just so tired of putting our girl (girls) through this.

The appointment wasn’t cancelled and as I battled the anxiety last night of having to go, this verse popped up in a friend’s status on Facebook and I felt peace start to step in…

“do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

Philippians 4:6-7

I took a breath and headed up to bed, then I grabbed my Bible and flipped it open to see this, a verse my Mom had given me years ago that has carried me through SO much.

And then I fell asleep.

Today, when we walked into the clinic, it was a totally different atmosphere.  There wasn’t any chaos, they were organized and my nervous tummy started to settle.  This clinic is run so much differently than others and I was blown away by the people and the interactions we had, primarily the ones they had with Audrey.

Then our Pediatrician Dr.L came in and all of a sudden it all fell into place.  She’s kind and soft spoken, she asked questions and then she listened – really listened!  She talked to Audrey, she was patient and she didn’t once discredit what we were saying.   All I kept thinking over and over as the appointment progressed was “YES! This is who we needed to see, thank you Lord!”

After a few minutes of explaining what happened she looked right at us and said “I think they did the right thing sending you to us”  Even Audrey relaxed around her, something that isn’t easily accomplished these days and while we had a struggle getting AJ to let her examine her tummy the rest of the appointment went smooth.

She explained that what we could be facing is one of hundreds of different Biochemical and Genetic disorders/diseases.  They are rare and often times very difficult for the average pediatrician to diagnose,  they require extensive blood work and cultures to be done and are almost always a result of things that each parent can be genetically carrying.

It was a 90 minute appointment and this would end up being a 90 paragraph post if I were to explain everything that she said, but here is the long and short of what we learned, what is happening and where we could still use your prayers:

– They are running many, MANY tests on Audrey.  They took sooo much blood today at the lab, more than we’ve ever seen them take and when it was over my little Rockstar was left shaking.  It was hard to watch but we know it’s purpose is for a greater good.

– Some of the blood work that they are doing has to be sent out of Canada.  It will be going for specific tests in search of things we don’t even understand and these results take time to get back.

– Dr. L is very concerned that we develop a plan for in the meantime when these episodes occur.  She’s putting together and emergency package for us, because often times the only way to diagnose a Biochemical disease is to catch it while it’s working.  That means that we will have collection containers, emergency letters with explanations/instructions for other doctors and a game plan for when/if an episode occurs.  I have to carry them with me at all times and in the event an episode happens we head for the closest emergency with package in hand and they are to collect what is needed and treat her appropriately with IV and other things.  It seems a little scary maybe to some but to me it feels like “Hallelujah”  she doesn’t want our girlie to suffer, she isn’t saying she has to tough it out, Dr. L wants us to be able to help her through it!

– We discussed our concern over Audrey being exposed to too many germs and how life is supposed to carry on for us.  Dr. L agrees that these precautionary measures need to be taken and that our best bet is to be careful what Audrey is exposed to.  She’s not suggesting that we lock ourselves in our home indefinitely, but rather that we think ahead and trust our instincts.

– We’ve discussed the fact that Corey and I are concerned with how easily her hemmoglobin fluctuates and she agrees!  Instead of saying “Low may be her normal” she flat out told Corey today that “Low isn’t normal, it has a reason and we need to find it” Can I get another AMEN?!

Please keep praying that answers come soon.  Please pray that if there is something to find, that we find it and it can be addressed.  Please pray and thank the Lord for Dr.L and her team, because today we felt truly blessed by what they brought to the table.  And please pray that Corey and I can find the tools to help both our girls handle this road emotionally. It’s hard to be a big sister watching your little sister go through this and it’s hard to be the one going through it.  Thank you all for your love, support and prayers.  I honestly can’t tell you how much each comment, email, Facebook and phone call mean to us.

Today over all went well.  It was long, it was emotional and it was hard on our little Rockstar, but today more than any other day I felt the hands of God on us.  He’s been guiding us to this day, this clinic and this doctor.  Today He picked up my dry fleece and handed it back to me.  Today He I so clearly heard Him say, “You don’t need a fleece to test my power, you need to trust that long before you worried, I was already there”.

11 thoughts on “Another Update

  1. It sounds like you had the best appointment that her unique case could have had. While you didn’t get any direct answers today, it sounds like things are on the upswing and the right people are paying attention. It is always nice to have a game plan and you have one!
    Also, I’ve been the nurse to many unique cases where patients present me with letters and orders from their specialized physician upon admission. It is always really nice to have that instead of being left to guess and start from square 1 (again and again).
    Mama in the City recently posted..The Nice And Tidy Bedroom

  2. I just wanted to tell you that I truly admire your ability to have Faith in something bigger. Faith has such power, and it obviously gives you a lot of comfort and strength. I'll be thinking about you and your family. I hope you get the right answers sooner than later. I have no doubt that He is with you every step of the way. Take care.

  3. This just plain makes me smile! FINALLY! Good job on trusting your instincts and not letting this go. And may all that bloodwork be the answer!

  4. I am so happy for you guys. We know all too well how difficult it can be not having answers. We just got some answers after six years of fighting, trying to prove something wasn’t right and although it wasn’t the outcome we wanted, it was such a huge relief off our shoulders b/c now we can focus on how to help our baby boy. I’m so glad the Lord gave you prayers and answers today and although it may become a long road ahead, your daughter is lucky to have such an amazing and caring mother to advocate for her and be her voice!

    Our thoughts are with you 🙂
    Jodi Shaw recently posted..trailer park residents face homeless as big shot developer offer them pennies to vacate

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