Tuesday, October 25, 2011

Cast #5

Yesterday we went for cast #5. It is hard to believe we have been on this journey for over a year now. Parts of me are very bitter. Very bitter. Parts of me are sad and parts of me are just grateful that we have a course to follow and have amazing friends to support us. Here is the nitty gritty of it.

I knew as us moms just do that Kiya's curve wasn't any better. I tried to be positive but I knew. She looked GREAT for like 3 maybe even four days and then the shoulder drop returned and my heart sank just a little. My hope was for any correction no matter how small but such was not the case. Dr. H says we are basically the same as where we started so around 60 and that Kiya is bascially straight in cast. It is frustrating to us and to him. He even went and double checked her MRI to see if something was missed but nope all clear. So we plug along and keep on casting and praying that someday the correction we see initially will stay even just a little.

To make things even more frustrating we now have another issue to deal with. Two of the doctors heard a heart murmur yesterday. It was mentioned once before 2 casts ago and not last cast at all or by any other doctor. That said Kiya doesn't go to the doctor much so it is very possible that it has been missed. She is due for her 3 year check up at which time we will be seeking a referral for a pediatric cardiologist. We need to first do an EKG and then depending what that reveals do an echocardiogram.  Fun. NOT.

Kiya is also due for an important blood test. One I have been putting off but we need to do it. She HATES needles and having her blood drawn so not at all looking forward to this.

All that said, Kiya weighed in at 30.5lbs and 38.8 inches tall. My string bean is sporting a dark green cast and doing great. Yesterday was rough. She didn't come out of anesthesia as well as she did last time so she was CRABBY. But we pushed forward and were headed home by 12:30ish. She watched more episodes of Olivia than I care to think about but she survived the day. She ate a little and slept great. I am so amazed by her constant resilience. She is amazing.

We were fortunate to meet sweet Lauren and her parents yesterday. It was nice to talk with another family. It was weird to offer support and advice as they are still new to this journey and I am used to being the new kid on the block. It was really strange but I was glad I could offer advice, tips and support.

So there you have it. We survived. We didn't get any straighter but we didn't get any worse so I will take it and move on. It's what we do.

Wednesday, October 12, 2011

Let me get this straight.....


Websters definition: free from bends, curves, angles or irregularities.

My definition: Miracle.

When you've lived for over 2 years fighting Infantile Scoliosis, there are certain words you come to despise: wait and see. water. sand. vomit. casts. surgery. numbers. anesthesia. x-ray...the list does go on. There are other words, if you're a treatment patient of Chicago, you just as equally come to favor: Shriners. Gwen. Linda. Tom. Ruby. Hammerberg. Lucky Cast Club. Hope. Brace.

But there is a word you don't expect. A word so sacred and special, coveted and desired, you just don't speak of it. You don't whisper or even say it to yourself in the quiet spaces of prayer or solitude. You long for it and hope for it and pray for it, but you don't really know if it's ever a word that will become once again, a part of your every day vernacular.

And in the company of your beloved family of friends also fighting; also longing for their day in the sun, it's actually painful to say out loud or in their presence when you finally reach the day the word is spoken.


shhhhhh....did you hear that? That was my gasp. That was my heart. That was my soul lifting in disbelief.

Today, 36 days after Jackson received his brace, we returned to Shriners Hospital in Chicago to find out how well his spine is holding without the protective armor of his cast. We had little anxiety or trepidation because, honestly, we've been pleased with the way he has looked each and every time he gets his "break". I'm always petrified to look each time, but I can't stop myself, and what I see always gives me relief.

Yet there is always that chance. You know the one. It taunts you and looms behind you in creepy dark corners and steals your thunder? Pops your balloon. Kills your buzz? Yes. That one. It tapped me on my shoulder today as I drove us to the hospital this morning but I managed to push it back and bid it farewell once we walked into the hospital.

Jackson was a champ...as always, and in typical Shriners fashion, the warm, loving welcoming of our friends and the spoils of toys, books, games, crayons and smiles made us feel at home. We visited Jackson's friend Tom who takes his pictures and got a sneak peek before we'd return to have our clinic consult with Dr. H.

I am glad I was solo today (Daddy couldn't be with us). I would have probably squeezed his arm or hand so tightly and drained it of its blood supply if he had been. I had to contain my disbelief and giddiness as to protect myself from maybe a twist of reality or mis-read on my part. But I know what I saw. And it was beautiful, but yet that was all I was willing to say to myself. Remember...shhhhhhh, the word we don't speak of.

And then Dr. H met up with us back in our room. He strode in like a gallant knight... with his sword of protection and mighty steed---Oh wait. That was just my thought after the news. He pulled up the x-ray, zeroed in on the picture and proceeded to compare it to the x-ray taken on November 4, 2009. There they were. Side by side. Ever so clearly and candidly facing us. With confidence and what appeared to be surprise, he said it. He said IT.

"It looks straight!"

He proceeded to have Jackson remove his gown and bend over so that he and his observant and loyal interns looking on could also see for themselves as he traced his finger down my son's spine. And he said it....AGAIN! Let me get this straight...you're uttering that which we don't speak of TWICE?!

"It's looking really straight..." I have no real recollection of what was said after that. He lost me at straight.

With solid and excellent news of minimal rotation, aligned vertebrae and not needing to return for an x-ray for another 4 months, I glided out the doors of that hospital. I am not certain my feet touched the ground. I am certain that my superhero himself, held me close, lifted me up, and gallantly threw out his cape behind us. We then flew together with the wind of change and the gratitude to God carrying us home.