Tuesday, April 21, 2015

they stick together

Kemeri's cast removal was yesterday. This had to be one of the sweetest things ever...When Kemeri became apprehensive about the loud noise so near, Kendi grabbed her hand for reassurance & held it the whole time.

Her incision is healing beautifully, but there's still a bit of swelling. The most amazing thing was seeing visible movement in her thumb already. I'm anxious to see what happens once OT begins in a few weeks! In the meantime, she is sporting a snazzy pink splint with orange straps (we all kind of raised our eyebrows at the color selection, but it actually looks quite fun!).

Thursday, April 9, 2015

a recap of surgery day

We were up bright and early at 5:00 a.m. this morning and out the door by 5:40 a.m.  We had to be at the hospital at 7:10.  Kemeri was such a trooper about the early road trip.

Once checked in, she was dismayed to discover plain blue jammies laid out for her.  She wanted to know where the ones with sparkles were.

Her special item of choice to keep with her today was her dolly she just got for her birthday (remember, the one with a hand and scar just like her!).

Sparkles were heavy on this child's mind.  When they asked her what color cast she might like, she immediately said, "Pink AND purple WITH sparkles".  Hmmm.  I happened to look into the gift shop while walking downstairs, and this guy caught my eye.  Pink, purple, AND sparkles.  Being tired and having one's baby in surgery for 4 hours is not a good recipe for restraint, so of course I did.  I was also concerned that the request for the multi-colored cast complete with sparkles may have been too tall an order.

Behold, a pink AND purple cast for my girl AND her special doll.  Not only that, the doctors dug around and found a silver sharpie to draw a flower on each cast for "sparkle". Bless them.

The doctors (she has 2 specialists) were happy with the tendon transfer and feel it is well secured in her thumb.  They were both fascinated, though, because as they were examining the options, they discovered that Kemeri is missing the nerve that most people have in that part of the hand.  The reason they were fascinated is because by all rights, she should have no feeling in her thumb.  That's not a good thing, especially in children because they are unaware of injury or inadvertently causing harm to an extremity.  However, she has some kind of sensation going on there.  What an amazing blessing!

Sweet girl asked, "You come snuggle 'wif' me?"  So, into her hospital bed I went.  I am reminded in these moments when all she wants is the comfort of Mommy just how very far we've come.  Love her beyond words.

Wednesday, April 8, 2015

hand surgery {take 2}

Last year, I posted this update following Kemeri's first hand surgery.  She has continued to make some progress, but not quite as much as her specialists think is possible.  She has a very slight amount of "squeeze" between her new thumb and the rest of her hand, but not enough to be super helpful.  We were told in the beginning that more than one surgery was a possibility, and here we are.  We are scheduled for tomorrow morning to have a tendon transferred with the hope that it will enable her to have more strength and movement in her thumb (think zippers, buttons, & all kinds of other everyday things people don't typically think twice about).  Thankfully, this surgery is not as intensive as the other one, so the recovery time should be less.

I do want to address something as best I can.  Someone recently made a snarky comment that put me a little on the defensive (I try not to go there, but you know, I'm human).  The decision to opt for surgery on Kemeri's hand is NOT for cosmetic reasons and was not made lightly.  After lots of research, discussions, opinions, etc., we decided surgery was worth pursuing to increase the practical functionality of Kemeri's left hand.  To be honest, her specialists have talked of doing a toe transfer, but we didn't feel like that was an avenue necessary since Kemeri has one fully formed hand.  If that's something she chooses to pursue down the road, we would fully support her in that.  However, the best chance for success with the tendon transfers and release are while she is young, so those decisions we had to make for her based on what we felt was in her best interest now.  Every child with a limb difference is unique in what might be a good intervention or not.  We love our Kemeri Abigail's little hand, period.  We are not trying to make it look a certain way, but we are trying to bring her some strength and greater functionality.  She is talking openly about her surgery tomorrow and is excited that we are trying to make her thumb move more so she can hold things with her left hand...she practices all the time!  Anyway, I never, ever mind someone asking about our decisions at all!  It's really quite amazing and interesting to see and learn about all of the different options, so I am more than happy to share.  I just don't do so well with assumptions that are contrary to reality. :)

I will try to update from the hospital tomorrow...we would love your prayers for a successful surgery!

Monday, April 6, 2015

it's like independence day

Easter, 2015.  We colored eggs & threw some chocolate & jelly beans in baskets. (Really, because that decorative grass stuff? Just no. The kids requested its banishment several years ago because it never leaves.  Smart kids.)

I really do love that the big boys joined in of their own free will. Seeing the kids doing things together makes the whole egg coloring thing worth it.

Easter was very reflective for me this year.  I even talked to Joe about it before church.  And then we get to church, & the sermon was in that same place of reflection.  It's so easy to go through the motions of these holidays without really feeling the significance of what it meant for Jesus to take my place on that cross and to rise again.  As I have been rolling it around in my mind and heart, the word that keeps coming to mind is "freedom".  Not only did Jesus' death free me from my sins, but His life and death have given me the freedom to live life beyond just surviving it.  I am free to love, hope, and dream, even in all my imperfections.  I am free to live in a way that doesn't look like the American dream, but in a way that brings joy that the American dream can never supply. I am free to question, to wrestle, to stumble...all the while seeking Jesus in me and in you.  

It's like Independence Day from sin, death, indifference, conformity, and the measuring sticks of this world.  We are free to create communities of grace, love, forgiveness, generosity, compassion, and hope with the unique passions God has instilled within each of us.

That's it...I think next Easter, we need fireworks.  Brilliant explosions of light in the sky on Easter seem way more appropriate than chocolate bunnies.  Who's in? 

Christ has set us free to live a free life. So take your stand! Never again let anyone put a harness of slavery on you.  ~Galatians 5:1

Christ is Risen...He is Risen, Indeed!!