Monday, October 1, 2012

We finally are on the road to straightening a ugly spine of our cute little boy.


With 503 miles behind us, I feel like we are now on the right road of getting chase's Progressive Infantile Scoliosis straightened out. We left mid morning for Chicago.With the only thing on my mind was knowing this probably will be the first of many trips to Chicago.

I hated to think what chase was thinking of everything going on. One long trip staying in a weird place where he had to sleep and it just wasn't like home. Then the driving in Chicago is SO crazy. I don't know how he could take a nap in the crazy driving. But he did enjoy the closet doors in the hotel full length mirrors he spent most of his time in the hotel room admiring the cute baby in the mirror.  

The whole time we was in Chicago waiting for 9a.m. Friday to come. I felt that feeling you have waiting in the doctors office waiting room when your waiting for test results. That unknown fear. The feeling I have had since I knew chase's best chance of beating this ugly spine condition would be getting him in to a doctor that does this type of casting. I still have this heavy feeling on my heart for chase. What he has to go threw. I know in the end he will be better but its going to be a long road. 

Friday 9am could of not came any slower. We got there and felt like for ever waiting for them to call "Chase".Once back there we didn't have much wait at all to see the nurse then a intern and finally the doctor. Everything the doctor said I have already read on the internet. The intern need to learn some more stuff before she should be aloud to see patients. She looked at me and shock her head like I took my son to a witch doctor when I told her my son has been seeing a chiropractor for his torticalis in his neck. For one she practically refused to think he ever had it in the beginning because he don't show it now. When she was telling Dr Hammerburg Chase's medical history she mentioned that he had torticalis and parents have been taking him to a chiropractor for it. And he looked at his neck and was stated "well he don't have it now". All that was said. But down to the main part of the appointment. Chase had x-rays done and good news is the curve is still at 60 degrees(Cobb angle) Bad news is its still at 60 degrees and hasn't went down. Dr. Hammerburg's feels casting will be better for chase.But the better results with casting is seen in lowing degrees. 60 degrees is a pretty high number. This curved developed in 4 months or less. We don't know how fast it grew ,we just know the time frames of a chest x-ray chase had to get done 4 month before we took him to the doctors because his ribs just started looking weird. A curve of 80-100 can be dangerous. Progressive Infantile Scoliosis is the leading orthopedic condition to be fetal for infants. No one hates likes hearing that. But its something that makes you even hug your kids a lil bit tighter.

Saturday Mike had to work,so it was just me plus the 5 kiddo's. Once they came over and had to pick one up out of town. Which it was a good car ride to clear my mind. All the kids in a good mood and singing alone with the radio. Just going do some country road(which the kids love because its one hilly little road). Which I know pretty good because I use to drive it home a lot when I lived 10 miles away from Litchfield. How simple life us to be then. I had my friends over for dinner and went to the drive in for the last time this year. Mike and Chase stand back from tiredness. It was good spending some one on one time with the kids. But I couldn't help but still think about my little baby boy that was sleeping in his crib. 

Even when not at a appointment for chase or in Chicago.For what he is going threw and this family with him is always on my heart.I see how people and kids look at him with just the brace on not knowing why he has it. It breaks my heart that my little boy isn't getting attention for his big blue eyes or that he should be a baby for Gerber advertisement like a lot of people says he should. But because he is different and people just don't know what progressive infantile scoliosis is. I know he will be OK threw this. Its just the long road, the ignorant people, the challenges, and the unknown that's on our hearts.     

So right now we are just playing the waiting game again. Dr Hammerburg's nurse will be calling sometime this week to be telling us when Chase's first casting day is.

2 comments:

  1. Wonderful, informative blog, my dear one. I can't believe you had the patience to start and finish such a long blog. You truly have matured in the past couple of years.

    I'm so proud of you and confident that you will do everything for the good for Chase. You are so on top of things.

    Mike's kids are lucky to have you in their lives...you give so much for Chase but you have lots of time and love left over to spare.


    This is one proud Momma...WTG Punky!


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  2. Monica,

    Thank you so much for the beautiful comment your left on my blog. I'm so thrilled for you that you have your first casting appointment! Bex was 63 degrees and he was 19 months at first casting, so you can have a lot of hope. My best advice is to stay the course, don't give up even if the curve gets stuck at a number for a while. We got very little correction in the middle of casting for almost a year (Bex got better in the first few casts, then stayed around the same for 4 or 4 casts, then suddenly got better and better!). Don't give up, you will not regret this choice for your child, you are doing the best thing for your baby. The embarrassing parts are fleeting. You get to pass the message along someday and help the next family and child! It's not easy at all, it really can be so painful for the parents, but it's all worth it, every minute. Sending you love and hugs and email me any time at girltomom@gmail.com Love, Heidi

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