Re: Excited... but do not want to get my hopes up

November 10, 2010

I know exactly how you feel. My sons last cast will be removed jan.13th. He

will then be brace/cast free for 6 weeks to see if his spine holds. What if he

does regress?? Then he will be in a brace and what will that be like? He has

been in a cast for 15 mos and it is all he knows. What if he cries for it

back?? So many questions and no concrete answers. Such is the scoli journey.

Best of luck to you!

Troy <troy.willmann@...> wrote:

>Novella has her cast off date scheduled for December 8th. I want to be excited

but I cant help but wonder if this is only temporary. She will be one day shy of

8 months old on the cast off day. She has scoliosis and hip dysplasia and has

been in a mostly full body cast since August 17th. She has very low muscle tone

so I am excited to get her up to speed. However, her curve to date in cast is

22* which is down from 46* in three casts. I hope by December 8th the curve is

even lower. She has never been x-rayed out of cast since the first cast was put

on so I an nervous to see what her curve is out of cast. She is set to be put in

a brace for 20 hours a day until walking age and then they will re-evaluate her

situation and her curve and maybe we can talk about less bracing hours per day

from then on (Best case scenario). I want to be so excited for her but I can't

help but wonder if she will regress. Scoliosis is such an " unknown " and i just

want to be able to enjoy her but i am not sure if i will be able to because i

will always be worrying about if her curve is getting worse again. Novella is

also scheduled for an MRI 2 days before her cast off date so I am nervous about

that and wish it would have been done sooner. She also is schedule for genetic

testing early next year. It seems the worries never end. I so took for granted

how healthy our first child was and never expected to be going through this for

as long as we have been.

>I was waiting in the x-ray waiting room on Monday and a lady sitting next to me

saw Novellas cast and said " Well that kind of puts a damper on things doesn't

it? " and he daughter followed up by saying " Man that would suck. I would hate to

be in a cast like that " . At first i was offended but then thought, " Well you are

exactly right " . This does put a damper on things and i am sure it does suck for

her to be in this cast. However, there are worse things in life and I get to see

Novella smile everyday. If she is still smiling so can I! Thanks for listening.

>

November 10, 2010

Troy,Beautiful (if she is still smiling so can I). You sound like such a wonderful parent!Expectations are one of the most difficult parts for me. Why wouldn't they keep casting longer, if I may ask, when there is still so much growing time, especially under age 2? How is her hip doing now? Welcome to Cast! Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Troy <troy.willmann@...>infantile scoliosis treatment Sent: Tue, November 9, 2010 8:29:56 PMSubject: Excited... but do not want to get my hopes up

Novella has her cast off date scheduled for December 8th. I want to be excited but I cant help but wonder if this is only temporary. She will be one day shy of 8 months old on the cast off day. She has scoliosis and hip dysplasia and has been in a mostly full body cast since August 17th. She has very low muscle tone so I am excited to get her up to speed. However, her curve to date in cast is 22* which is down from 46* in three casts. I hope by December 8th the curve is even lower. She has never been x-rayed out of cast since the first cast was put on so I an nervous to see what her curve is out of cast. She is set to be put in a brace for 20 hours a day until walking age and then they will re-evaluate her situation and her curve and maybe we can talk about less bracing hours per day from then on (Best case scenario). I want to be so excited for her but I can't help but wonder if she will regress. Scoliosis is such an "unknown" and i just want

to be able to enjoy her but i am not sure if i will be able to because i will always be worrying about if her curve is getting worse again. Novella is also scheduled for an MRI 2 days before her cast off date so I am nervous about that and wish it would have been done sooner. She also is schedule for genetic testing early next year. It seems the worries never end. I so took for granted how healthy our first child was and never expected to be going through this for as long as we have been.

I was waiting in the x-ray waiting room on Monday and a lady sitting next to me saw Novellas cast and said "Well that kind of puts a damper on things doesn't it?" and he daughter followed up by saying "Man that would suck. I would hate to be in a cast like that". At first i was offended but then thought, "Well you are exactly right". This does put a damper on things and i am sure it does suck for her to be in this cast. However, there are worse things in life and I get to see Novella smile everyday. If she is still smiling so can I! Thanks for listening.

November 10, 2010

Novella's hips are now stable after 2 closed reductions but they still need to

make more progress covering the fermoral head. I think our doctor is taking

Novella out of the cast due to her development. She has been in the cast since 4

months and been in a hip brace since 4 days old so she is pretty limited on her

development. He believes that building her trunk muscles will eventually help

her and the curve will correct itself along the way. He says he is optimistic

about her curve and believes that since she is so long her curve and hip

dysplaysia was a result of it in the womb. I hope he is right. I am glad he is

thinking about her development but if her curve starts to go back up I will not

hesitate to get her back in a cast. I think if Novellas hips were not casted and

needed to be braced he might have kept her in the cast longer but being in the

full body cast has really taken it's toll on her development. Thanks for the

support.

On Wed Nov 10th, 2010 2:10 AM EST NIck Guthe wrote:

>Troy,

>

>Beautiful (if she is still smiling so can I). You sound like such a wonderful

>parent!

>

>Expectations are one of the most difficult parts for me. Why wouldn't they keep

>casting longer, if I may ask, when there is still so much growing time,

>especially under age 2? How is her hip doing now?

>

>Welcome to Cast!

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners,

>currently down from 62 degrees to 20 in cast)

>

>________________________________

>From: Troy <troy.willmann@...>

>infantile scoliosis treatment

>Sent: Tue, November 9, 2010 8:29:56 PM

>Subject: Excited... but do not want to get my hopes up

>

>Novella has her cast off date scheduled for December 8th. I want to be excited

>but I cant help but wonder if this is only temporary. She will be one day shy

of

>8 months old on the cast off day. She has scoliosis and hip dysplasia and has

>been in a mostly full body cast since August 17th. She has very low muscle tone

>so I am excited to get her up to speed. However, her curve to date in cast is

>22* which is down from 46* in three casts. I hope by December 8th the curve is

>even lower. She has never been x-rayed out of cast since the first cast was

put

>on so I an nervous to see what her curve is out of cast. She is set to be put

in

>a brace for 20 hours a day until walking age and then they will re-evaluate her

>situation and her curve and maybe we can talk about less bracing hours per day

>from then on (Best case scenario). I want to be so excited for her but I can't

>help but wonder if she will regress. Scoliosis is such an " unknown " and i just

>want to be able to enjoy her but i am not sure if i will be able to because i

>will always be worrying about if her curve is getting worse again. Novella is

>also scheduled for an MRI 2 days before her cast off date so I am nervous about

>that and wish it would have been done sooner. She also is schedule for genetic

>testing early next year. It seems the worries never end. I so took for granted

>how healthy our first child was and never expected to be going through this for

>as long as we have been.

>I was waiting in the x-ray waiting room on Monday and a lady sitting next to me

>saw Novellas cast and said " Well that kind of puts a damper on things doesn't

>it? " and he daughter followed up by saying " Man that would suck. I would hate

to

>be in a cast like that " . At first i was offended but then thought, " Well you

are

>exactly right " . This does put a damper on things and i am sure it does suck for

>her to be in this cast. However, there are worse things in life and I get to

see

>Novella smile everyday. If she is still smiling so can I! Thanks for listening.

>

November 10, 2010

My niece Idadora had the full body spica cast for hip dysplasia (2 casts and and 2 surgeries). It's interesting to think they might be connected- scoli and hips sometimes. You sound like you are right on top of it. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Troy Willmann <troy.willmann@...>infantile scoliosis treatment Sent: Wed, November 10, 2010 7:57:03 AMSubject: Re: Excited... but do not want to get my hopes up

Novella's hips are now stable after 2 closed reductions but they still need to make more progress covering the fermoral head. I think our doctor is taking Novella out of the cast due to her development. She has been in the cast since 4 months and been in a hip brace since 4 days old so she is pretty limited on her development. He believes that building her trunk muscles will eventually help her and the curve will correct itself along the way. He says he is optimistic about her curve and believes that since she is so long her curve and hip dysplaysia was a result of it in the womb. I hope he is right. I am glad he is thinking about her development but if her curve starts to go back up I will not hesitate to get her back in a cast. I think if Novellas hips were not casted and needed to be braced he might have kept her in the cast longer but being in the full body cast has really taken it's toll on her development. Thanks for the support.

On Wed Nov 10th, 2010 2:10 AM EST NIck Guthe wrote:

>Troy,

>

>Beautiful (if she is still smiling so can I). You sound like such a wonderful

>parent!

>

>Expectations are one of the most difficult parts for me. Why wouldn't they keep

>casting longer, if I may ask, when there is still so much growing time,

>especially under age 2? How is her hip doing now?

>

>Welcome to Cast!

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners,

>currently down from 62 degrees to 20 in cast)

>

>________________________________

>From: Troy <troy.willmann@...>

>infantile scoliosis treatment

>Sent: Tue, November 9, 2010 8:29:56 PM

>Subject: Excited... but do not want to get my hopes up

>

>Novella has her cast off date scheduled for December 8th. I want to be excited

>but I cant help but wonder if this is only temporary. She will be one day shy of

>8 months old on the cast off day. She has scoliosis and hip dysplasia and has

>been in a mostly full body cast since August 17th. She has very low muscle tone

>so I am excited to get her up to speed. However, her curve to date in cast is

>22* which is down from 46* in three casts. I hope by December 8th the curve is

>even lower. She has never been x-rayed out of cast since the first cast was put

>on so I an nervous to see what her curve is out of cast. She is set to be put in

>a brace for 20 hours a day until walking age and then they will re-evaluate her

>situation and her curve and maybe we can talk about less bracing hours per day

>from then on (Best case scenario). I want to be so excited for her but I can't

>help but wonder if she will regress. Scoliosis is such an "unknown" and i just

>want to be able to enjoy her but i am not sure if i will be able to because i

>will always be worrying about if her curve is getting worse again. Novella is

>also scheduled for an MRI 2 days before her cast off date so I am nervous about

>that and wish it would have been done sooner. She also is schedule for genetic

>testing early next year. It seems the worries never end. I so took for granted

>how healthy our first child was and never expected to be going through this for

>as long as we have been.

>I was waiting in the x-ray waiting room on Monday and a lady sitting next to me

>saw Novellas cast and said "Well that kind of puts a damper on things doesn't

>it?" and he daughter followed up by saying "Man that would suck. I would hate to

>be in a cast like that". At first i was offended but then thought, "Well you are

>exactly right". This does put a damper on things and i am sure it does suck for

>her to be in this cast. However, there are worse things in life and I get to see

>Novella smile everyday. If she is still smiling so can I! Thanks for listening.

>

November 10, 2010

U have a great attitude and apparently the ability to make this tough girl cry

I'm sure things will progress okay! Maybe your doc will be right. Delving

into the great unknown is such a grand experiment isn't it? I also focus on my

smiling little guy. He rarely complains of his brace and takes it in stride, so

we do too. Whatever or however you and your family has adjusted to the situation

....it's the norm of your life bc you live it. I don't think outsiders

understand. I'm sure it sucks too... But if your daughter is anything like Ben

she doesn't know any better bc it's what she's used to! My first child is

healthy as a horse even though he was 6 months premature. He never required

special help and met all milestones on time. Go figure. I thank god every day he

was 1st. I watched for milestones as a hawk and so when Ben didn't meet his I

knew something was wrong.

Best of luck for miss Noelle, I will be crossing my fi gers for you all.

T

Sent from my iPhone

On Nov 9, 2010, at 10:29 PM, " Troy " <troy.willmann@...> wrote:

Novella has her cast off date scheduled for December 8th. I want to be excited