Re: wishes/To adaptive equip.

December 29, 2004

Hi !

We just submitted a request to MAW, and if Maddie qualifies (which the doctor said she would) we were going to ask for some sort of a swingset/slide thing (like you see at the parks) for her. She loves to be outside, but is so left out when her sisters are climbing the ladder and swinging and sliding on the set we have now. I have a ten month old as well as the three girls, so it's hard for me to give Maddie the extra help she needs. Can you give me some ideas as to what you are asking for for Zach? I'd like something she can climb herself (steps, maybe?) and slide down safely. Thanks!

Holly Rubio

Re: wishes granted

zachs is life threatening, but it has a good prognosis. Yet we find zachs immune system weakinging leaving him more suseptible to pneumonias which in fact are more dangerous for him. I think from what i gather is u dont need a fatal disease , yet children living w/ a life threatening ailment. I bet logan would qualify. See we can afford trips to disney etc so we had to think long and hard what zach wanted. He can't relay himself a s well to express what he wants. I gave him some options and he chose one which in the long run is something that we wouldnt have been able to get for him that will make his life more fun and more independant. He is getting an adaptive playground. For the back yard so he doesnt have to struggle w/ the ones we have and i dont have to stand right behind him as much. He gets it this spring/summer if we have a place to put it we're building a house well been building permits for the last year to build the house.

Atleast we have land to put the swing set on:)

Kim wrote:

Also you might inform your genetics doc that MAW is trying to change their image and they no longer just grant wishes for children with terminal illnesses...but children with chronic illnesses which surely he has.

Darla,

I was wondering about this,,do you know what kinds of illnesses MAW qualifies on ? Logan has been "officially" dx with failure to thrive,possible cerebral palsy,hypotonia,pectus excavatum,static ecephalopathy,and juvenile arthritis. He also carries the possible dx of mitochondrial disease,possible myopathy and/or a possible connective tissue disorder. I don't want to get a wish,if we don't qualify for it,,but on the other hand,I am so scared that he has something progressive,,and by the time he is dx,he will be wheelchair bound. As it is,he can't ride his new bike (with training wheels) that we got him for Christmas,for more than 5 minutes,because his legs get too tired,,but he used to be able to ride his tricycle with no problem.

What do you think ? Also,Katelyn has bipolar and OCD,,and while it isn't really a life threatening illness,,it sure is life changing !

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY __________________________________________________

January 2, 2005

Hi Holly:

We just got done completing a 14,000 square foot playground that is 90% accessible.

Besides the equipment I would highly recommend getting the surfacing for

underneath the equipment. That way if a child is in a wheelchair or uses

a walker they won't have to contend with the uneven ground. You could even

have a path from your house out to the play equipment. May be by working

with your occupational and physical therapist you can look at cataloges to

see what is out there. There is plenty of equipment with straps for support

and we got a climbing mountain that had wide steps so a child with AFO's

can use them easily. There is a Jenn swing that is a swing that lays back

(picture your child sunbathing in the chair) and it has straps on it for

support. We have a seesaw that can hold four kids and the two back seats

have a back and straps on them. We ordered our equipment from Gerber products

here in Madison, WI. They have a web site. Will try to find it if you are

interested. How big of an area are you doing? Can you have a ramp system

to connect two areas? We also got from Play World a piece of equipment called

Talking Bob. It is a stand alone talking device. You spin the "nose" talk

in to it and it repeats what you said back. You can get it in different

forms, space ship Bob, underwater Bob, Human Bob where he talks like a munchkin.

So besides actual equipment you may want a few play panels to play with.

Just a few thoughts for you to think about.

Nerenhausen

mom to Leah

Holly Rubio wrote:

Hi !

We just submitted a request to MAW, and if Maddie qualifies (which

the doctor said she would) we were going to ask for some sort of a swingset/slide

thing (like you see at the parks) for her. She loves to be outside, but

is so left out when her sisters are climbing the ladder and swinging and

sliding on the set we have now. I have a ten month old as well as the three

girls, so it's hard for me to give Maddie the extra help she needs. Can

you give me some ideas as to what you are asking for for Zach? I'd like

something she can climb herself (steps, maybe?) and slide down safely.

Thanks!

Holly Rubio

-----

Original Message -----

From:

sarah

To:

Mito

Sent:

Wednesday, December 29, 2004 5:50 AM

Subject:

Re: wishes granted

zachs is life threatening, but it has a good prognosis. Yet we find

zachs immune system weakinging leaving him more suseptible to pneumonias

which in fact are more dangerous for him. I think from what i gather is

u dont need a fatal disease , yet children living w/ a life threatening

ailment. I bet logan would qualify. See we can afford trips to disney

etc so we had to think long and hard what zach wanted. He can't relay

himself a s well to express what he wants. I gave him some options and

he chose one which in the long run is something that we wouldnt have been

able to get for him that will make his life more fun and more independant.

He is getting an adaptive playground. For the back yard so he doesnt

have to struggle w/ the ones we have and i dont have to stand right behind

him as much. He gets it this spring/summer if we have a place to put it

we're building a house well been building permits for the last year to

build the house.

Atleast we have land to put the swing set on:)

Kim wrote:

Also you might inform your genetics doc that MAW is trying to change their image and they no longer

just grant wishes for children with terminal illnesses...but children

with chronic illnesses which surely he has.

Darla,

I was wondering about this,,do you know what kinds of illnesses MAW qualifies on ? Logan has been "officially" dx with failure

to thrive,possible cerebral palsy,hypotonia,pectus excavatum,static

ecephalopathy,and juvenile arthritis. He also carries the possible

dx of mitochondrial disease,possible myopathy and/or a possible connective

tissue disorder. I don't want to get a wish,if we don't qualify for

it,,but on the other hand,I am so scared that he has something progressive,,and by the time he is dx,he will be wheelchair bound. As

it is,he can't ride his new bike (with training wheels) that we got

him for Christmas,for more than 5 minutes,because his legs get too

tired,,but he used to be able to ride his tricycle with no problem.

What do you think ? Also,Katelyn has bipolar and OCD,,and

while it isn't really a life threatening illness,,it sure is life changing !

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital

myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100

% BOY __________________________________________________

January 2, 2005