Yesterday's appointment

[Guest guest]

Good morning all,

Well, after a very long day, yesterday, I have good news and bad. The good news is that Shane will continue to be treated at Shriner's in Philly with Dr. C (BIG THANKS TO HEATHER FOR THAT). The bad news is that Dr. C confirmed what Dr. V at Stanley at New York Presbyterian told me. Shane will inevitably need to have surgery to implant growing rods. I am so upset by this. His 10/6/10 scoliosis x-ray was measured by 3 different orthos at 3 different facilities. They measured his middle curve (he has 3 (a top, a middle and a lower)) a 52º, 53º and 55º respectively. When he was casted by Dr. V on 1/11/11, they never took an x-ray after. They gave me what looked like a sonogram and told me that, "it looked like the curve is now in the mid 20's". Yesterday, Dr. C ordered an x-ray for Shane in the cast and the middle curve he now measured at 38º. So, there is some change but we won't know if it's going to hold. Dr. C did tell me that Dr. V did a great job with the cast and that it looks great. He said that because of Shane's age (3 years old) that he will leave this cast on until April. He said that at this age, they change it every 3 months. So, I thought we only had to wait 4 more weeks to find out if the curve will hold out of cast, but now it's 8 weeks. I feel like I'm starting the countdown all over again. I will be continuing with Shriners in Philly and with Dr. C. Those people are AMAZING and very compassionate. Dr. C's plan is to cast Shane every 3 months (with a 2 day break) until 1st grade. Then put him in a brace until his early tween-teen years (if it works). If the casting starts to show no more improvement, then they'll stop the casting. If he makes it into a brace and it shows regression, then they'll go back to casting. But, regardless, Dr. C feels that at some point he will need the growing rods implanted. This is the one time I hope that the doctors are wrong. All I have is HOPE and I have to hope that the casting will work until he's old enough to get his spine fused without any implants.

Thank you, everyone, for your help and advice as I continue to get Shane the proper treatment. I know I'm in the right place (both here and Shriner's). I don't know where Shane and I would be (treatment wise, mentally, emotionally, etc.) if not for this group and . You guys are the best. And just because Shane is on the right course, I'm not going anywhere. I AM HERE TO STAY. And I will continue to raise money for ISOP. We need to get the awareness out there to help other children get the proper treatment.

Have a great day, everyone.

SUZY ºOºsuzy3333

In a message dated 2/8/2011 9:03:00 A.M. Eastern Standard Time, suzy3333@... writes:

I am taking Shane to Shriner's in Philly today. I am hoping that they take Shane on as a patient and not hold it against us that he has already been casted elsewhere. I am also hoping that they tell me that the cast Shane was put into on 1/11/11 is appropriate and that we didn't do it for nothing. After speaking with (she is an angel that without her, I would be clueless), I fear that he's in the wrong cast (his starts at a little under the armpits). I fear that because of the curve on top that maybe he should be in an over the shoulder cast. He has 3 curves. I don't know how you guys post the x-rays on here. If I could figure it out, I would post it to show you.Anyway, wish me and Shane luck. And if you know of any questions I should ask Dr. C, please, please, please, let me know. I'll be checking my email throughout the day. Have a great day, everyone. I will update tonight when I get home (and the babies go to bed). , I will call you tonight as well.Suzanne