Re: Re: cast retreat for our kiddos

[Guest guest]

I think its a great idea! But, we'de have to do a state by state

estimation of patients and go from there. The registration fee would be a

must as all of ISOPs funds are going towards this years ET Tutorial (s).

Lets brainstorm on this a bit....Im wondering if a prompt/U.S. map on

www.infantilescoliosis.org might help in the assessment of how many

families would be interested in each state...

Free and safe locations may be tricky too. Any ideas on that? Lets start

brainstorming on this ladies. We've talked about this for years and maybe

now we have the constituency base to do it!

HRH

> Joy I have been thinking the same thing about wishing my daughter could

> meet other kids in casts so she would see she's not alone. One little boy

> lives close to us but he graduated and is 0 degrees now!! : ) My son has

> heart defects and we belong to a group called Little Hearts, they meet

> once a summer and plan a day long event, they do a picnic lunch and games

> etc so all the heart kids and their mom's can meet! There's a registration

> fee to help pay for the food but it's not huge. Maybe we can all do

> something like that by region? (assuming you are in the U.S which I know

> many in this group are not)..New England, Southern US, Northeast ect..that

> would be so awesome! if you are reading this what do you think??

>

>

>>

>> > Kieran is going for cast 9 at SLC Shriners Wednesday January 11. He

>> has been cast since he was 20.5 months old with an initial curve of 85

>> degrees, rotation of 90 degrees and RVAD of 110. He has had problems

>> with his spine and ribs since birth. He still has no other issues.

>> >

>> > Kieran is now three and a half. He has been fully potty trained,

>> including night trained since he was 2. He pulls his own pants up and

>> down. He is not good at wiping himself due to not being able to reach

>> well so we help him. Kieran loves the cast saw. He thinks it's neat

>> and sits calmly and patiently while they remove his cast. Afterwards

>> he walks around the room with his massive curve, rotation and other

>> thoracic contortions saying to me, " mom, just let me wiggle a little. "

>> He is most stable in his cast.

>> >

>> > Today I convinced him to lead up a step with his left instead of his

>> right leg and he almost fell down the stairs. He tried a few more and

>> found he did not have the ability to take the stairs that way. I would

>> like to work on this with him but think that doing stairs with his

>> left leg leading is not the right place to start. I have no idea where

>> to start and I am baffled by his extreme scoliosis. His standing in

>> cast curve was a little over 40 degrees or so last cast with a very,

>> very high RVAD -- his ribs are pointing up on the right side and

>> nearly straight down on the left. This is his biggest challenge with

>> his scoliosis aside from the number of years he is clocking with

>> severe scoliosis. I have no idea where to begin to improve his

>> situation any better, I just know that I have no interest in surgery

>> for him.

>> >

>> > So we'll keep going and hope that whatever we do it works.

>> >

>> > Kieran is in preschool, swims quite a bit in a dry suit, likes skating

>> lessons, although I have yet to take him just by myself, and to dance.

>> He hopes to play soccer.

>> >

>> > I hope all of you and your kids are doing as well as could be expected

>> under whatever circumstances prevail. Happy New Year to Everyone!

>> >

>> > I will post how Kieran does in cast 9. First cast I feel I am just

>> waiting to hear the numbers instead of having my heart set on one that

>> I never get to hear. Although that may change between now and when the

>> doctor measures his curve on the xray next week.

>> >

>> > Take care and all the best to everyone!

>> >

>> > Shauna

>> > mother of Kieran, , and Kelsey Leamy

>> >

>> >

>>

>

>

>

[Guest guest]

Nice...Great idea! I'll fwd this suggestion to my IT Director to see if

this is doable for ISOP and will keep you posted.

Thanks a bunch!

HRH

> Google Maps would be really handy to get everyone's location. You set up

> a shared map, give them the link and directions on how to add their

> location and then everyone in the group can see the map and see where

> everyone is located. The map could be embedded on your website too for

> others to see if you wanted as well. If you'd like more detailed

> information let me know .

>

>

>> >>

>> >> > Kieran is going for cast 9 at SLC Shriners Wednesday January 11. He

>> >> has been cast since he was 20.5 months old with an initial curve of

>> 85

>> >> degrees, rotation of 90 degrees and RVAD of 110. He has had problems

>> >> with his spine and ribs since birth. He still has no other issues.

>> >> >

>> >> > Kieran is now three and a half. He has been fully potty trained,

>> >> including night trained since he was 2. He pulls his own pants up and

>> >> down. He is not good at wiping himself due to not being able to reach

>> >> well so we help him. Kieran loves the cast saw. He thinks it's neat

>> >> and sits calmly and patiently while they remove his cast. Afterwards

>> >> he walks around the room with his massive curve, rotation and other

>> >> thoracic contortions saying to me, " mom, just let me wiggle a

>> little. "

>> >> He is most stable in his cast.

>> >> >

>> >> > Today I convinced him to lead up a step with his left instead of

>> his

>> >> right leg and he almost fell down the stairs. He tried a few more and

>> >> found he did not have the ability to take the stairs that way. I

>> would

>> >> like to work on this with him but think that doing stairs with his

>> >> left leg leading is not the right place to start. I have no idea

>> where

>> >> to start and I am baffled by his extreme scoliosis. His standing in

>> >> cast curve was a little over 40 degrees or so last cast with a very,

>> >> very high RVAD -- his ribs are pointing up on the right side and

>> >> nearly straight down on the left. This is his biggest challenge with

>> >> his scoliosis aside from the number of years he is clocking with

>> >> severe scoliosis. I have no idea where to begin to improve his

>> >> situation any better, I just know that I have no interest in surgery

>> >> for him.

>> >> >

>> >> > So we'll keep going and hope that whatever we do it works.

>> >> >

>> >> > Kieran is in preschool, swims quite a bit in a dry suit, likes

>> skating

>> >> lessons, although I have yet to take him just by myself, and to

>> dance.

>> >> He hopes to play soccer.

>> >> >

>> >> > I hope all of you and your kids are doing as well as could be

>> expected

>> >> under whatever circumstances prevail. Happy New Year to Everyone!

>> >> >

>> >> > I will post how Kieran does in cast 9. First cast I feel I am just

>> >> waiting to hear the numbers instead of having my heart set on one

>> that

>> >> I never get to hear. Although that may change between now and when

>> the

>> >> doctor measures his curve on the xray next week.

>> >> >

>> >> > Take care and all the best to everyone!

>> >> >

>> >> > Shauna

>> >> > mother of Kieran, , and Kelsey Leamy

>> >> >

>> >> >

>> >>

>> >

>> >

>> >

>>

>

>

>