Thursday, May 13, 2010

The Initial Unveiling

So far we've been at the children's hospital every day this week.  We get a break today, and then we are back down there tomorrow.  Fortunately, it has all been good stuff!!

Monday, we went for a check-up with Abbie's gastroenterologist.  I was a little concerned because she is skinny these days.  After her intestinal infection in March, and then the surgery, she has lost some weight these past few months.  Not only was the doctor not worried, but the reason  he was not worried made me almost sing.

"The body has a hierarchy of needs, when it comes to distributing calories.  The brain gets fed first.  With the gains she is making, it is obvious that her brain is getting what it needs."  Woo-hoo!!  He also said that her quick recovery from a long surgery, as well as how much taller she is getting, shows that her body is healthy and getting what it needs.  A great visit.

Tuesday we went for a follow-up with the orthopedic surgeon.  I was startled a bit, but excited, when he decided to take the casts off a week early.  Here's what her matching clubs looked like:

Her thumbs were completely swaddled in fiberglass, so we could barely see the glint of the metallic pin holding her thumbs in position.

Kyle decorated this cast within two minutes of Abbie being home after the surgery.  Too bad that he used the smelliest, most industrial black marker ever made.  Poor Abbie was sitting amid fumes for a couple hours, but knowing her brother loves her more than made up for it.

 The fingers were well-padded, which also hid the pins holding her second and third fingers in place.

As the first cast came off, I caught my breath and must have groaned a bit, because Dr. B. said "Hey,  you can't gross out now!"  To which I replied, "There is a paperclip sticking out of my daughter's thumb.  I just need a moment."

I apologize for the blurriness of the following photos - a combination of using a phone camera, holding her with my other hand, and trying not to look too closely....  

Abbie will certainly have her longest thumbnails ever with that shiny trellis underneath.  The pin extends a good ways down the bone.

The incision along the "life line" is healing well, and it sure is nice to be able to see all of her palm again, without her thumb in the way.

Yep, those pins go right through her skin and into the bones of her fingers.  Dr. B is using them to give those joints a good chance to get used to their new positions.

As creeped out as I was looking at the pins, initially, we are now pretty used to them.  We just have to take care to keep them wrapped/padded/covered so that they don't catch on anything.  Can you imagine?  Ouch!!

Speaking of "ouch"...Dr. B. is planning to take the pins out in his office next Tuesday.  I trust him immensely, and he apparently does this all the time, but still...this is my baby girl, and I am a little squeamish and a little concerned in thinking about this.   We have lots of tools in our pain management bag, and I'll be  packing all of them with me.

We also took the dressings off her hips, which look great, and her knees, which are also healing well.  She has been cleared to begin range of motion exercises again, so back to work we go!

Before we went to get her casts off, Abbie and I sat outside reading Psalms.  Suddenly, it hit me.  This date could have marked the day she died.  On May 10th, we were advised to disconnect life support, and after hearing the reasons why, consented to do so the following day.  Abbie voted to the contrary later that evening, but the effects of having to make that decision have never left me.

May 3rd may remind us every year of what we have lost, but May 11th sings to us about what we still have -- and she is beautiful! 

Tuesday, May 04, 2010

Mile Marker Six

I didn't realize that this would be the year when May 3rd would fall on Monday until the twins and I were  going through the calendar recently to plan their 13th birthday bash.  I momentarily caught my breath, and then determined that it was not going to matter.

In the week since that realization I have pressed deeply into  Paul's exhortation to let go of what lies behind and press forward.  God was so gracious to me in making today look and feel so different than the first day of our journey six years ago.  Rainy, voggy, steamy -- it in no way resembled the bright, shiny day our lives changed.

But, don't you know, whenever we make bold statements, like "it is not going to matter" we are sure to be tested severely.  And, so it has been today.  As I type, Abbie is an inpatient once again, having been admitted through the ER because of bilateral pneumonia.  Can I tell you though, I will simply not be moved...I will not.

After I had dropped Genevieve and Abbie off at the ambulance entrance to the ER, I parked nearby.  Casting Crowns' "Praise You Through the Storm" came on the radio, just as I was looking up to see the beloved church steeple that saw me through so many nights.  I laughed.  Out loud.  With joy.  I realized that I am not the woman who arrived at this hospital in an ambulance and in shock all those years ago.

Entering the ER I hardly glanced at Trauma 1, where Abbie was saved, and the sounds and smells didn't turn my stomach.  All day long I had practiced not dwelling long on memories of that day when normalcy died.  So, by the time I reached Abbie's bed I might as well have been strolling through the mall.  I am not kidding. God wasn't exactly carrying me like he did that first horrific night, it was more like we were dancing together.

I realized that it has become easier lately to let go of what lies behind (the hardest part being not dwelling on memories of who she was before she was hurt), because I feel like I need both hands available to receive all the exciting things being unleashed in Abbie's life.

This girl is utterly amazing.  Lying on a gurney with junky lungs, she was still using her eyes to read along with me the novel we are just starting.  She paid attention to every conversation.  When her pediatrician mentioned that she'd had knee surgery, Abbie turned her head to look at her in shock, and you could almost see her thinking "Wow!  Even doctors have to go through this sometimes."

I just can't convey how great she looks, how attuned she is to everything going on around her, and how freely she was swinging her casts around tonight.  Tears of awe are falling as I look at her. So brave, so strong.  She is not the same little girl who started this grand adventure, either.  She has been refined more ferociously than I can imagine, and yet she grins.  I am just so grateful that she chose to stay with us.

The week before Abbie's surgery Kyle brought home a little gift for Abbie from school.  I had no idea who sent it, and was tickled to read the card from his English teacher.  She has obviously been following Abbie, which always touches my heart, but what really endeared her to me was when she wrote about Kyle, who can drive her crazy at times, yet it still one of her favorites.  I know just how she feels!  She noted that Abbie has an appreciation for Robert Frost, as does she.  I had expected a little booklet of Frost's poetry in the package, so was stunned when a beautiful pendant appeared instead.  Its words sum up these years so beautifully:

Two roads diverged in a wood...
And I took the one less traveled by,
And that has made all the difference.

May God bless you for your faithful support of our family.  I am certain  my assignment in Heaven will be drafting Thank You cards, because I will need an eternity to catch up on the ones I owe.  Thank you for traveling this narrow road with us...YOU have made all the difference.

To God be the glory.