Re: Support group- Patty

January 23, 2010

Patty,

Our last cast change in Dec. was similar, we actaully went 2 degrees backwards, but I just compared the last two "in cast" X-rays, and I do think the lower spine looks better in the latest one. It's just not the main curve.

I was so disappointed, and shocked at the idea Bex could be in casts and then braces until he's fully grown, I think I'm just now getting over being depressed about it after a whole month. So I just wanted to say I know how upsetting it is. We were told from the beginning that it could be 2 years of casting and that we could easily get no correction in 3 or more casts in a row, and I still didn't believe it! It's hard to not have any expectations, but I am looking onward.

Big HUG to you!!! Heidi, Bexon's Mama, (2.5 years old, in 5th cast from Salt Lake City Shriners, currently down from 61 degrees to 23)

To: infantile_scoliosis Sent: Sat, January 23, 2010 7:38:22 AMSubject: Re: Support group

Tasha,

Thank you. I did go into this knowing it was caught late and knowing that we may end up needing surgery eventually but I'm still holding out hope that she will get better. I'm just taking it day by day and trying not to be the pessimist that I usually am. She got her first cast back on July 1 so we are almost a full 7 months into casting. It actually doesn't feel like it's been that long. I didn't ask about rotation but I called the secretary to ask and she said she will get back to me. Patty, mom of Isabella, 2 years old, in 4th cast (Rochester) & mom to & Evan

From: Tasha Fontenot <ryanswalkyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Sat, January 23, 2010 8:32:01 AMSubject: Re: [infantile_scoliosi s] Support group

Patty,I am happy to hear she is feeling better. Thank God it was a short lived bug! Hang in there with the casting. I know for us it was a L O N G 14months, but I would do it all over again. It was always hard for me to read the wonderful news about other children having great results, when was barely coasting along. I had to keep reminding myself EVERY child is DIFFERENT! They will all respond differently to casting. I know this is Isabella 4th cast, but when did her casting journey begin? You said she looked better.....I bet her rotation is down. Did her doc mention it? went through a period of time when he would FREAK out when we turned the corner and he saw ish Rite. He knew what was going to happen. He did NOT like the nurses or

docs......they were always very understanding about it too. I just tried to comfort him the best I could. Even outside(post office, grocery store, etc.)the hospital if he saw a nurse in scrubs he would freak. It eventually got better.Thanks for updating us. Keep us posted.

TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Fri, January 22, 2010 10:44:20 PMSubject: Re: [infantile_scoliosi s] Support group

Tasha,

Thanks for asking about Isabella. You probably read my other post to Joan but I will repeat that we think it was just a virus and I guess she just had trouble getting through it after going through her casting and everything. She was really making me nervous last Friday when she wouldn't stay awake but ended up coming around mid to late afternoon. And as for her casting, Isabella now realizes where she is at and started crying the minute she saw the doctor's office and then again at the hospital. She actually did better this visit with cooperating for xrays. I'm not sure what is going on with her numbers. The doc pulled up her xrays from all 4 visits and the last one differed from what I thought it was. Instead of going into all of that, I will simply say that from his measurements, there was a little improvement but from what I thought the numbers were last time, there was no improvement so I was confused and

frustrated. I will say though that this is the first time that I thought her back actually looked a little better to me so I was comforted by that.. Our doc continues to tell us that he doesn't know how much correction we will get and that we will just take it one cast at a time. I could tell from talking to him though that we have a very long road ahead of us. Patty, mom of Isabella, 2 years old, in 4th cast (Rochester) & mom to & Evan

From: Tasha Fontenot <ryanswalkyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Fri, January 22, 2010 9:10:12 PMSubject: Re: [infantile_scoliosi s] Support group

Patty,Is everything OK with Isabella? Please update when you have time and feel like it.

TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Fri, January 22, 2010 7:07:21 PMSubject: Re: [infantile_scoliosi s] Support group

I am way behind on posts as we had a casting last week and some problems at the end of it and tonight I was just blown away by what happened the last few days. All I can say is I'm in agreement with this post from Tasha and hope that it's all over. Patty, mom of Isabella, 2 years old, in 4th cast (Rochester) & mom to & Evan

From: Tasha Fontenot <ryanswalkyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. . comSent: Wed, January 20, 2010 9:42:38 AMSubject: [infantile_scoliosi s] Support group

I have held back trying to think about what to say. I went to bed thinking about all the DRAMA that unfolded last night. And I woke up thinking about it. I prayed about this morning....needless to say it has been on my mind. What went on last night got way out of hand. This is not what this group is about. Anyone new reading this PLEASE do not let this cloud your views of this SUPPORT group.We ALL have helped in some way to promote ISOP. And we do not have to prove that anyone. No one is better than the other.There are many ways to help: -answering questions to a new, very frightened parent -selling bracelets for ISOP- telling a stranger about

IS -holding a fund raiser- giving money to Shriner's, ish Rite or ISOP(its YOUR money....YOUR choice!) -making videos -sending info to pediatricians

-being a part of this SUPPORT group(every view is needed! you may not click with everyone, but you may click with someone)Bottom line is we are going to have different views. ****Attacking one another for what ever that reason might be is wrong and should not be public knowledge!!! *** What kind of message are we sending to new members?! My heart is sad this morning and confused about what this group is all about. And now good parents are leaving the group. This is shameful!We should stand behind each other and be happy for anything that is done to help get the word out about Early Treatment. YES, ISOP is what got casting to the US and I am ever so grateful! BUT that may not be your passion.My son, , did not benefit from Mehta treatment with casting, BUT I vowed to spread the word. That is MY passion. I don't have lots of money to give, but I know what to

tell people about Infantile Scoliosis. That is what matters to me. Sure without ISOP I would not know anything about Early Treatment, but without Texas ish Rite Hospital for Children would probably be looking at surgery. I have been on the group now since July 2006. I have got SUPPORT here and have seen the support grow.. Lets not go in a direction that changes what this group should be about.I am ready for a new day and to be a support to anyone here on the group. Come on people lets show new members how great this group really is!!!! Love you ALL!!!! TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantil escoliosis. org/stories. html

January 23, 2010