We had a very difficult two days, on this last trip to Chicago. When I say we, I mean my whole family.
David and I, and our children. This was Kaitlyn's 7th casting and no one wanted to go this time.
Kaitlyn being the one who didn't the most, of course. This time even Isaac didn't want us to go.
He was uncharacteristically emotional and upset before we dropped him off to his Grandparents house, while we were gone. This has always been hard on him too, but he normally is very easy going and ok. Not this time.
Even I felt like acting like I was two all over again, throwing a fit and dragging my feet in protest.
None of us wanted to go to Chicago, travel for five and a half hours and stay in a horribly dry hotel room and get up before the sun. Only to slap a cast back on Kaitlyn and spend all day in the hospital.
We've been traveling back and forth to Chicago for almost two years now, and it's getting really old and trying on all of us. We've never gone to Chicago for all the attractions like so many, maybe one day we will.
The night before we left for Chicago, I cuddled with Kaitlyn in her bed and we chatted and sang her favorite
songs. I rubbed her little back and we prayed together. I explained again, that we would be going for her new cast in the morning. She said "NO Mommy! Why?!"... she's getting older and wiser every day. I knew the day would come that she would start asking "why?". It's hard to know what to say to her sometimes, she's so smart, but yet she's also only three years old and won't be able to understand why Daddy and Mommy do the things they do. I am dreading the day, if it should come, when she asks me "Why am I different? Why did/does these things happen to me?" I'm not sure what I'll say to her then either. I hope that day never comes, but the fact is it will. I have only God to help me know what to say to her when the time comes.
Kaitlyn has consistently been roughly around 42 degs (in curvature) while *out of cast, for the last three casts.
Her Ortho. Dr. has gotten her little spine down to 14 degs (in curvature) *inside her cast.
For the last three casts I have held out so much hope that *this cast would be the cast that will make a change in her spine. I anxiously await the "talking time" with her Ortho. Dr. after her casting is over.
I've been disapointed each time. He will say that there is no change in her *out of cast numbers this time, but she's responding well with her *in cast numbers. I go each time with so much hope and I guess you could say expectation that THIS will be the cast. Every time we go to leave, I will be sad that there was no change this time.. but always try and stay positive. For my own sanity at least.
On Christmas Eve we took Kaitlyn out of her 6th cast, so that she could enjoy a Christmas without a cast.
She was thrilled to have it off during all the Holidays :) She was out of cast this time for ten days.
The Ortho. Dr. wants the kids to be out of cast for no longer than seven days, before the next casting.
They are given a week for cast freedom, to splash in the tubby and get real dirty.. and more importantly to see how the spine is going to hold. So she was out for just three days longer than the normal seven, we didn't see that as a problem.. we wanted her to enjoy her Christmas to it's fullest.
When we took her cast off, you could still see her curve. To some people she looks/looked pretty striaght and looking great. Even though she may look great, you really honestly can't say until she's had her xray done.
So I never try and go by what her spine "looks" like during her cast brake. Kind of an emotional safe guard for this Mama.
Well, we went to Chicago with barley enough money to get us there and back.. and for our hotel...food.
That's always fun. But certainly, VERY greatful beyond words, that we had just what we needed to get her there! We got to the hospital before the the sun, at 6:00 A.M and Kaitlyn knew right where we were and what was coming. She never once objected or threw of a fit. That's my Kaitlyn :)
She got all checked in and into her little yellow gown and they took her back for her xray. I stayed with Khloe this time in the waiting area. I told David to take a pic of her xray, so that I could see what it looked like.
I think this time, he and I really had such a hope that "today will be the day.. we hear change!!"...
As soon as I saw David walking back into the waiting area, from the pre-op room.. I knew it wasn't good..
just by looking at his face. He gave me my phone and as soon as I saw the photo.. my heart sank.. someone may as well of punched me in the gut. Her xray was worse than it was the last time.. HOW COULD THIS BE?!
WHY?! WHY?! WHY?!! that was running through my mind and more.
David started reassuring me right away, telling me maybe it looks worse than it actually is. When you've seen so many spinal xrays.. you start to know how to read them a little. I wasn't so sure about that.
We waited for her casting to be over and to talk to the Dr., we ate quietly in the caffateria and let Khloe play in the play area. My heart aching the whole time. It was finally time to talk to her Dr.
He said that there wasn't any good change again, with her *out of cast numbers and that this time they got her spine to 16 degs. *inside her cast, instead of the normal 14degs. He was disapointed and frustrated that her spine hasn't been able to get any correction *outside her cast. He said that she's still able to get really good numbers *inside her cast, but her spine just seems to sling shot right back to were it was when she's out of her cast. He said that she's nearly 3 1/2 and that they can't cast children forever. That we may have to think about internal help, if the exrternal help (her cast's) arn't going to do the job. Growing rods.. (rods... rods..... inside my little baby...) Of course, I knew that, that could always be her future.. but I wasn't ready to hear that from her Dr. yet.... in no way, shape or form. My stomach was in such tight knots... my eyes burned.. I just wanted to get away from him.. I didnt want to hear this.. not yet.
These Mehta Casts were designed more for infants to two years old, as they have the most growth rates and their little spines are much more easier to train to "grow straight" then an older child. My baby is 3 1/2 and time is continually not on her side, with the possibilty of these casts making her straight or straighter.
She started casting at a great age, 13 months. But because of her two big surgeries and the time they each took for recovering and healing, and all those months that she was so sick.. she missed a great window of time while she was young and growing rapidly. I'll never know why she had to have those surgeries or why she had to be so sick all the time, why she had to miss out on all that valuable time. I can't change any of that.. but oh how I wish I could. Would we be in a diffrent sistuation right now, would her curve be better by now? I wonder that all time.. and it drives me nuts!
He made it clear, in so many words... that if she would continue to not get any correction like this.. that
we will have to make the decsion to either try bracing and/or go ahead with the growing rods surgery.
He said that, as of right now.. he's not "proposing surgery" and that we'll keep trying some more.
But for how much longer? I'm not even sure..
As soon as he left I went straight to the bathroom and balled. I didn't want to hear growing rods surgery.. I didn't want to hear that.. AGAIN.. she had no correction.
Kaitlyn's future for her scoliosis.. is so unclear to us right now. When I found out that she had scoliosis and I had researched about it and all the horrid facts surrounding it. I vowed that I would NOT let her go through horrific back surgeries every 6 months. I wouldn't let that happen to MY baby.
That's why I spent days researching to find another way.. I found casting and the ISOP website and great people to show me how to get started with casting. I still believe that GOD showed me the way.
If it weren't for these last 6 casts, I shutter to think about how much worse her little spine would be today.
They have held her straighter for the last two years, they have kept the MONTSER scoliosis at bay..
I am SO thankful everyday for these casts. I just wish with ALL my heart that her spine would respond outside her cast and learn to grow straight.
We also learned that while she was out for those ten days, her spine had regressed by a couple of degrees.
So now she's around 47 degs outside her cast, from what it was before, 42 degrees.
Scoliosis is a Monster, a monster who's only mission is to take my little girls spine and curve it into a mangled mess, to alter her little body and threaten her life. Scoliosis is a Monster who takes SO much away from her short childhood and away from our family. It really feels like a loosing battle sometimes, like this Monster called Scoliosis is winning. We can't let it win.. it's been my mission everyday since she was 10months old to BEAT it.
So, what I have to ask of my dear praying friends and family.. is to continue to pray fervently for our daughter.
Twice as hard in fact. I feel like the only thing stronger than this Monster is indeed PRAYER!
We are trying so very hard not to get to the place where we can't dig ourselves out of the dark pit of no hope.
We are tying to stay encouraged in the Lord, and know that He has this all in hands.
But, as you can imagine this last trip to Chicago has left us feeling desperate and disheartened.
Kaitlyn has on cast #7, God's perfect number :) David says maybe this really will be the cast for change, since it is God's perfect number :) I really like the sound of that and maybe.. just maybe it will be?! :)
Also, Kaitlyn will be getting another MRI while she's on her next cast break. This will make MRI number 4 for her :( and I have to say that I am dreading it. Her Neurosurgeon ordered it to check on things, since her last surgery. I have a very strong hate for MRI's. She has never had a MRI that has revealed "good news" or even "no news". They have all been well... horrible news. SO I beg of you to PLEASE pray that her next MRI will go well and that for once we hear "everything's good on the MRI". Pray for this Mama's nerves :)
Thank you all who do take the time to read my blog post updates, and for praying for her.. I can't thank you enough! May God bless you all in return :)