Re: Re: Jen - story updates

[Guest guest]

Thanks Jen!

It would be great to have all the stories posted/updated before Olivia and I leave. Like I may have mentioned before, the docs feedback on the website was that the individual stories were most educational and valuable to them.

Please try and get stories and updates to me via e-mail before we leave.

Muchisimas gracias!!

HRH

Re: Re: Stories/Updates

This e- mail has really made me realize that I need to get Madison's story posted. (sorry ) I don't check the e-mail too terribly often, but this one caught my eye for some reason. At any rate.....My daughter, Madison, was first casted when she was 8 months old, by Dr. D'Astous in SLC, UT. Her cast was changed every six-eight weeks. She wore a cast for 15 months total and is now in a TLSO. We will be going to pick up her second one next Tuesday actually. Her original curve at first application was 54 Cobb and 45 RVAD. After just the first application she went down to 26 Cobb and 20 RVAD. (these measurements are to the best of my recollection) When the third cast was applied her curve actually increased and she had developed a compensatory curve. This was was explained to me because her rotation and wedging were being corrected. She wore a total of 7 casts. When the final cast came off (7/05) her RVAD was zero and her COBB was 12. After just having x-rays done last week her RVAD remains at zero and her COBB is at 5. The only problems we ran into was skin breakdown one time, which we had treated locally at a diabetic wound care clinic. We just had her cast trimmed down a little bit where the breakdown was occuring and within 3 days she was fine. As for after effects, what I notice first and foremost is a VERY straight spine with incredible posture. Upon Dr. D'Astous's recommendation she is receiving PT twice a week to help strengthen her torso and improve her balance. I can see improvement almost every session. Where she was experieincing pulmonary disfunction, all seems to be well now. She goes back for a follow-up on that 2/24. Considering the alternatives, I think she's doing great. I feel like I have tried to tell you all the poitives and negatives involved. In my personal opinion, I think the whole experience was tougher on me than her. She took her first steps ( she was 14 months old) in her 5th cast, at Shriners while walking with Dr. D'Astous, so it seemed very fitting to me. I guess because she learned to walk in the cast is why she has the balance issues, which really aren't that noticeable. And of cousre being in some type of brace or cast (born with sublexed hips) since the day she was born has attributed to the muscle atrophy in her torso. Because I can see constant improvement, I don't hesitate in saying I would do it all over again if I had to. You are going to be suprised how resiliant your little one is. I wish you and your family the very best.

As I stated in the begining I am HORRIBLE about checking the posts. If you, or anyone, would like to chat, I would be more than happy to talk to you. I live in TX (CST), and my only request is please don't call before 0700 or after 2000 my time. Otherwise, I am home all day usually and available for you. 325-651-9160. Sorry this is such a long e-mail, but I hope gives some of you new parents hope and maybe some who are in the journey and getting frustrated and renewed sense of hope. Happy New Year to each and every one of you.

mosunshinebaby <mosunshinebaby@...> wrote:

Like, , Chesney, Lacie, Kenzie, Lexi, Tess...What was their curve degree before 1st Cast?What age did they receive their first cast?How many casts have they gone through?What are their angles now?How old are they now?Just interested in seeing others outcomes from this if any of you have time, I would really appreciate it. I don't mean to ask all girls either, just because I have a daughter, would be interested in boys answers too even, anyone really who has time to share the above info and any additional info. would be appreciated! Even via personal e-mail if you want.. thanks so much!>> While looking through some of your pictures I can't seem to access > most of your e-mails b/c it's not listed in your profile. I'm just > wondering about some of the stories behind the pics & how your kids > are now. We are just entering into having my daughter's first cast put > on and I'm curious what lies ahead (how many casts, how responsive > kids curves have been etc.) Some of the baby girls w/pics posted > remind me of mine & I'm curious to know how things are going for them.> > Also, I think you're on this sight too Ian's Mommy (right?). He uses > an actual plaster cast with fiberglass outside & gortex type lining > too so it can get wet. Is there a specific name that I should find out > about the cast they're planning to use? And/or specific names that I > should be having used on her? Is there anyone here who had only had to > cast there young infant once or twice & had success??? Or is that > complete wishful thinking? Any input or advice is appreciated! She's > only 15 mos. so we want to make sure this is done right while she's in > the rapid growth period. Thanks.>

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