Our Family Stone

After a very emotional exam by the resident she was so worn out she couldn’t stay awake.

Today we went back to Children’s hospital for appointment 3 of 4 this month.   This past month has been hard, it seems Audrey is back sliding.  The fatigue is back full force and a few times over the past 2 weeks I’ve found her asleep on the floor trying to go out to play with B, or too tired to walk a short distance, the pale/washed out moments have returned along with her tiredness.  She has been complaining of her tummy more again and last night we had an episode that scared me to my core.  Audrey wound up in severe pain wailing and having me ready to pack her up for the emergency,  it came on suddenly with cold sweats, horrible pain and a wail that I can only attribute to these attacks, this is the first one I’ve ever seen this bad or during the day.  Then just before I was ready to leave for the hospital it stopped.  She was exhausted and all of us (my Mom & Dad were over) were left shaken – something is still wrong.

Here’s what came of today:

- We’re happy to report that her EEG was normal – no epilepsy and her ultrasound looked good!

- The doctor’s don’t know what’s wrong with her tummy and don’t know what else to do to check it out.  They warned me today they may never have an answer, I don’t know how I feel about that yet…

- I had to push hard for them to re-run her bloodwork.  We need to know if what we are seeing is happening in her blood, if the abnormalities from January are there or if they are cleared up.  The resident was very hesitant to redo them, not “seeing the point” because we see Bio-Chemical/Metabolic specialists in two weeks but I kept at them.  God was in the moment and I had strength I don’t normally posses, and a few emotional tears but finally he agreed to mention it to the pediatrician

- Dr. F, the pediatrician who really upset me last time (long story) was wonderful, she agreed labs needed to be re-done, she checked Audrey’s urine to be sure no kidney infection and assured me that they both believe us that something is wrong and that she doesn’t think this is my fault (which was implied last time).  I needed to hear that.

- We have ruled out a large majority of the super scary things – amen!  Now we have to dig a little deeper to see if there’s something rare we’re missing.

Now we wait.  We wait for labs, we wait for the next appointment on May 30th and then one on June 18th.   They want us to be careful to keep life normal but not do anything that could cause Audrey excess fatigue, to be careful not to intensify what’s happening.   We still don’t know how we feel about that or what that means exactly.

Something is going on in that body and if I didn’t know it before last night proves to me that something is still wrong with my girl.  So please don’t stop praying!  Thank you all so much for the words of encouragement, the prayers and the support, there is no expressing how much they mean to all of us!

Please keep praying for ultimate healing for her, that if God’s choosing not to heal her that He provide answers, clarity and that the doctors’ ears continue to be open to what we are saying.

There is so much to say, so many emotions to process, so much more that lay ahead and I’ll get to them, but not tonight.  Tonight I’m going to choose to be thankful – nobody told me she was dying today, nobody told us we couldn’t go home, nobody said that I was making her sick and tonight I still get to watch both of my babies asleep in their beds.

I’m choosing to believe this:

“My Father who has given them to me, is greater than ALL; no one can snatch them out of my Father’s hand.” John 10:29

If my heavenly Father is holding her close than I don’t have anything to fear.

A week ago Audrey made a decision, she was done sleeping in her “little” bed and was ready to move on to the Big Girl bed.  It’s been something she’s talked about on and off for a few months, but a milestone I was kind of looking forward to pushing off.

The move from a little bed to a big girl bed meant that the baby stage was officially over.  She will always be my baby, much like her rapidly growing big sister will always be my baby, but as these stages pass sometimes I feel a little sad.  Maybe it’s not sad that I feel, maybe it’s nostalgic.  They grow so fast. *sigh*

Anyways, she finally made the decision it was time to make the move, so we went shopping.  She chose a bed set, we bought sheets, we hunted down the right mattress and then we were ready.  Daddy was at work and I decided it was time to assemble the bed…

I am a carpenter’s daughter.  My Dad has built many beautiful homes, treasures and gifts over the years and I’ve not be oblivious to the things he does.  I know what a scroll saw is, and the purpose of a jigsaw, I know how to read a blueprint (sort of ish) and that rainscreen isn’t something you put over your windows to keep out rain.  I know the difference between a hammer and a screw driver (don’t ask me if it’s a Phillips or a Robertson, or a John Deere – I know which end goes in the screw…) and I’m pretty confident in my abilities to read directions.

I’m also stubborn and I was going to build this bed by myself.  The end.

Audrey and I set to work hauling out the heavy pieces and reading the mostly non-english instructions.  There was dropping of things, hunting for parts and maybe a little inner cursing when I dropped the headboard on my head, for the 3 time.  It took 1.5 hours (because we had to search for missing dowels), a whole lot of sweat, some blisters (Dear man who invented the Allen Key – you are a jerk) and then a whole heck of a lot of vaccumming, because once you move one piece of furniture and clean, you might as well move & clean behind it all.

Then we were done and this happened….

All of a sudden I had two big girls, in two big beds and I forgot about being sad.  They were happy and settled and it was good.