RE: wheelchair, CPAP, BAHA...

May 25, 2005

Michele, I know what your going through, I have a 14 year old son and the

trials and tribulations of teenhood!!!!!!

May 25, 2005

Michele,

there are versions of the " Umbrella Stroller " for bigger kids and adults. I

forget the name, but I am sure someone here will have it. If not, I will ask

the PT in the morning. They are usually blue or purple, fold up, very sturdy

and often insurance will pay. They are comfortable and easy to fold and light

to handle, but sturdy. They are not outrageously expensive and I think your

idea of this as opposed to a wheelchair is a good one. For Aubrie, who can

walk, it may be less stigmatizing yet she will also find it helpful to her.

Actually, the people in the wheelchair clinic will know exactly what it is and

will probably have one or two for you to see and for her to try.

Let me know if I need to get information from our PTs for you.

Good luck--I will be interested, too, in the BAHA stuff!!

pam

May 25, 2005

(((((((((((((((((((((((((((((())))))))))))))))))))))))))))))))))

just remember that no mater how much of a 'teenager' or even 'grown-up'

becomes -- you will always be his favorite mommy

Cole

>

> Hi! We have an appt Thursday with the wheelchair clinic to get fitted

> for a wheelchair. What I'm interested in is an umbrella stroller type

> chair that will work for Aubrie when she tires. I'd like it to be

> compact and portable. She doesn't fit in a regular umbrella stroller

> anymore cuz she's too tall. Plus she looks like a baby. It's more

> appropriate to look like a 7-yr old with physical disabilities than a

> baby. Any tips are appreciated.

>

> Tomorrow, we meet with the SLP and resp tech to begin CPAP therapy.

> Wish us luck that Aubrie is cooperative! I'll let you know how it goes.

>

> At the end of June we have an appt with a new audiology clinic to pursue

> a BAHA. I am very excited for that! I've been wanting this for years,

> but couldn't get anyone to support the idea. We requalified for our

> state Division of Specialized Care for Children assistance with medical

> expenses. The new coordinator is awesome. She's really the one who's

> made the CPAP and this BAHA thing happen. She's one of those angels

> that come along in the strangest places. An angel in the midst of

> bureaucracy -- go figure. Again, any tips on the BAHA are welcome.

>

> Thanks guys. On the down side, I'm getting very weary of all the

> " stuff " that interferes with daily life. I'm so swamped with stuff and

> so overwhelmed at the upcoming summer. Today, we walked to the little

> ice cream shop after school. I had errands to run on the way and hoped

> that the walk would get some of my nervous energy taken care of. All

> was well til I noticed Aubrie playing after ice cream -- except she was

> had stopped to sit in the grass trying not to poop. So we had to hurry

> to a nearby friend's who luckily had some panties her size and a baggie

> for the soiled ones. Argh! Can we not just get thru one minor event

> without something?? I know it's a very minor thing -- at least she is

> potty trained and eating ice cream! But now I'm wishing for more. And

> I need to get over it and quit getting frustrated with our

> " not-quite-normal " life. All the appts coming up is really aggravating

> me. We saved all this stuff for summer and still she missed over 1/3 of

> school last year. Yikes. She's going to miss well over 1/3 of the

> summer fun a typical kid would have. And she's going to hate the CPAP

> therapy. But she's simply got to do it. If it will be possible for

> people to understand her speech, she's got to cooperate and give it a

> try. There's so much to manage. I'd love to take a month off from all

> things CHARGE, but it wouldn't be worth trying to catch up. Kind of

> like taking time off work only to come back to an overflowing inbox.

>

> Another thing that's bothering me is how much I have to leave

> alone because we're at appts or something. He's fine, but I'd really

> prefer to be here more. There's no way around it. In the summer, I add

> something fun to our dr days so that he comes and we have a family

> outing. During the school year, I can't take him out all the days she's

> out. I'm really feeling like I lost him when she was born. He was at

> the natural time of separation from mama -- kindergarten year -- when

> she was born. I've always looked at that as a good thing because it

> helped so much -- vs him being 2 or something and still very needy of

> me. But this teenage separation thing is making it all seem worse and

> bringing it all up for me. I don't know why right now, but it's there.

> " Whoa " is me -- I'd better stop it!

>

> Thanks in advance for any tips on wheelchairs or BAHAs and thanks for

> listening to my whining.

>

> Michele W

> Aubrie's mom 7 yrs and 13 yrs

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at

www.chargesyndrome.org<http://www.chargesyndrome.org/>or by calling

1-.

>

> ------------------------------

> *

May 25, 2005

That sounds like the one our friend has. I can't remember the name

offhand, but I sent the info with our paperwork before our appt. Thanks!

Michele

pam.ryan@... wrote:

> Michele,

> there are versions of the " Umbrella Stroller " for bigger kids and

> adults. I forget the name, but I am sure someone here will have it.

> If not, I will ask the PT in the morning. They are usually blue or

> purple, fold up, very sturdy and often insurance will pay. They are

> comfortable and easy to fold and light to handle, but sturdy. They

> are not outrageously expensive and I think your idea of this as

> opposed to a wheelchair is a good one. For Aubrie, who can walk, it

> may be less stigmatizing yet she will also find it helpful to her.

> Actually, the people in the wheelchair clinic will know exactly what

> it is and will probably have one or two for you to see and for her to try.

>

> Let me know if I need to get information from our PTs for you.

>

> Good luck--I will be interested, too, in the BAHA stuff!!

> pam

>

May 25, 2005

I sure hope so. You know, we're getting to the stage where we are

getting stupider every day. It's not too bad really, but he does have

teen attitude. It's not mean or ugly, just aggravating.

Michele

Angelcole wrote:

> (((((((((((((((((((((((((((((())))))))))))))))))))))))))))))))))

> just remember that no mater how much of a 'teenager' or even 'grown-up'

> becomes -- you will always be his favorite mommy

> Cole

>

> >

> > Hi! We have an appt Thursday with the wheelchair clinic to get fitted

> > for a wheelchair. What I'm interested in is an umbrella stroller type

> > chair that will work for Aubrie when she tires. I'd like it to be

> > compact and portable. She doesn't fit in a regular umbrella stroller

> > anymore cuz she's too tall. Plus she looks like a baby. It's more

> > appropriate to look like a 7-yr old with physical disabilities than a

> > baby. Any tips are appreciated.

> >

> > Tomorrow, we meet with the SLP and resp tech to begin CPAP therapy.

> > Wish us luck that Aubrie is cooperative! I'll let you know how it goes.

> >

> > At the end of June we have an appt with a new audiology clinic to

> pursue

> > a BAHA. I am very excited for that! I've been wanting this for years,

> > but couldn't get anyone to support the idea. We requalified for our

> > state Division of Specialized Care for Children assistance with medical

> > expenses. The new coordinator is awesome. She's really the one who's

> > made the CPAP and this BAHA thing happen. She's one of those angels

> > that come along in the strangest places. An angel in the midst of

> > bureaucracy -- go figure. Again, any tips on the BAHA are welcome.

> >

> > Thanks guys. On the down side, I'm getting very weary of all the

> > " stuff " that interferes with daily life. I'm so swamped with stuff and

> > so overwhelmed at the upcoming summer. Today, we walked to the little

> > ice cream shop after school. I had errands to run on the way and hoped

> > that the walk would get some of my nervous energy taken care of. All

> > was well til I noticed Aubrie playing after ice cream -- except she was

> > had stopped to sit in the grass trying not to poop. So we had to hurry

> > to a nearby friend's who luckily had some panties her size and a baggie

> > for the soiled ones. Argh! Can we not just get thru one minor event

> > without something?? I know it's a very minor thing -- at least she is

> > potty trained and eating ice cream! But now I'm wishing for more. And

> > I need to get over it and quit getting frustrated with our

> > " not-quite-normal " life. All the appts coming up is really aggravating

> > me. We saved all this stuff for summer and still she missed over 1/3 of

> > school last year. Yikes. She's going to miss well over 1/3 of the

> > summer fun a typical kid would have. And she's going to hate the CPAP

> > therapy. But she's simply got to do it. If it will be possible for

> > people to understand her speech, she's got to cooperate and give it a

> > try. There's so much to manage. I'd love to take a month off from all

> > things CHARGE, but it wouldn't be worth trying to catch up. Kind of

> > like taking time off work only to come back to an overflowing inbox.

> >

> > Another thing that's bothering me is how much I have to leave

> > alone because we're at appts or something. He's fine, but I'd really

> > prefer to be here more. There's no way around it. In the summer, I add

> > something fun to our dr days so that he comes and we have a family

> > outing. During the school year, I can't take him out all the days she's

> > out. I'm really feeling like I lost him when she was born. He was at

> > the natural time of separation from mama -- kindergarten year -- when

> > she was born. I've always looked at that as a good thing because it

> > helped so much -- vs him being 2 or something and still very needy of

> > me. But this teenage separation thing is making it all seem worse and

> > bringing it all up for me. I don't know why right now, but it's there.

> > " Whoa " is me -- I'd better stop it!

> >

> > Thanks in advance for any tips on wheelchairs or BAHAs and thanks for

> > listening to my whining.

> >

> > Michele W

> > Aubrie's mom 7 yrs and 13 yrs

> >

> > Membership of this email support groups does not constitute

> membership in

> > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome

> Canada

> > information and membership, please visit

> http://www.chargesyndrome.ca, or

> > email info@....

> > 7th International

> > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> > Information will be available at

> www.chargesyndrome.org<http://www.chargesyndrome.org/>or by calling

> 1-.

> >

> > ------------------------------

> > *

May 25, 2005

The one my friend has is the MacLaren Special Needs Stroller. I think

it'll be ideal. If they'll pay for the sunshade (due to the colobomas)

and the net for stuff underneath, I'll be overjoyed! Of course, my

friend bought hers herself and got it in 2 days. Since I've got to go

thru all the right channels, it'll take ages... but I'll hope for the best.

Michele

>

May 25, 2005

YES!! McLaren.

We have kids who have them with the sun shade and insurance paid for it all.

You will need the justification letter, but that should be easy enough--she

needs it for her " special health needs " and the sun shade is eye protection--I

don't think you will have trouble, but it will probably take time. But...you

could have it in time for Florida!!

pam

May 25, 2005

You can find the stroller at www.adaptivemall.com. It is called the McLaren

Stroller and it has many accessories. I am attempting to get one for my son

, he's 5. I know how you feel. People look at him in his double stroller

and say " what a cute baby " . It bothers me so much that I ask people how old

their children are (usually in a stroller too and about 1 or 2 years of age) and

then I tell them that he is 5 years old. I know how you feel.

As for your struggles, I think we can all sympathize with your frustration. I

think it is terrific that you plan a family day out of Doctor appointments. I

might have to try that with my kids this summer. Thanks for venting because you

gave me a great idea.

Bernie, Mom of 5 cHARGE, and Amber 8

Michele Westmaas wrote:

Hi! We have an appt Thursday with the wheelchair clinic to get fitted

for a wheelchair. What I'm interested in is an umbrella stroller type

chair that will work for Aubrie when she tires. I'd like it to be

compact and portable. She doesn't fit in a regular umbrella stroller

anymore cuz she's too tall. Plus she looks like a baby. It's more

appropriate to look like a 7-yr old with physical disabilities than a

baby. Any tips are appreciated.

Tomorrow, we meet with the SLP and resp tech to begin CPAP therapy.

Wish us luck that Aubrie is cooperative! I'll let you know how it goes.

At the end of June we have an appt with a new audiology clinic to pursue

a BAHA. I am very excited for that! I've been wanting this for years,

but couldn't get anyone to support the idea. We requalified for our

state Division of Specialized Care for Children assistance with medical

expenses. The new coordinator is awesome. She's really the one who's

made the CPAP and this BAHA thing happen. She's one of those angels

that come along in the strangest places. An angel in the midst of

bureaucracy -- go figure. Again, any tips on the BAHA are welcome.

Thanks guys. On the down side, I'm getting very weary of all the

" stuff " that interferes with daily life. I'm so swamped with stuff and

so overwhelmed at the upcoming summer. Today, we walked to the little

ice cream shop after school. I had errands to run on the way and hoped

that the walk would get some of my nervous energy taken care of. All

was well til I noticed Aubrie playing after ice cream -- except she was

had stopped to sit in the grass trying not to poop. So we had to hurry

to a nearby friend's who luckily had some panties her size and a baggie

for the soiled ones. Argh! Can we not just get thru one minor event

without something?? I know it's a very minor thing -- at least she is

potty trained and eating ice cream! But now I'm wishing for more. And

I need to get over it and quit getting frustrated with our

" not-quite-normal " life. All the appts coming up is really aggravating

me. We saved all this stuff for summer and still she missed over 1/3 of

school last year. Yikes. She's going to miss well over 1/3 of the

summer fun a typical kid would have. And she's going to hate the CPAP

therapy. But she's simply got to do it. If it will be possible for

people to understand her speech, she's got to cooperate and give it a

try. There's so much to manage. I'd love to take a month off from all

things CHARGE, but it wouldn't be worth trying to catch up. Kind of

like taking time off work only to come back to an overflowing inbox.

Another thing that's bothering me is how much I have to leave

alone because we're at appts or something. He's fine, but I'd really

prefer to be here more. There's no way around it. In the summer, I add

something fun to our dr days so that he comes and we have a family

outing. During the school year, I can't take him out all the days she's

out. I'm really feeling like I lost him when she was born. He was at

the natural time of separation from mama -- kindergarten year -- when

she was born. I've always looked at that as a good thing because it

helped so much -- vs him being 2 or something and still very needy of

me. But this teenage separation thing is making it all seem worse and

bringing it all up for me. I don't know why right now, but it's there.

" Whoa " is me -- I'd better stop it!

Thanks in advance for any tips on wheelchairs or BAHAs and thanks for

listening to my whining.

Michele W

Aubrie's mom 7 yrs and 13 yrs

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca, or email

info@....

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information

will be available at www.chargesyndrome.org or by calling 1-.

---------------------------------

May 25, 2005

Hi Michele- Ethan will be getting a Kimba wheelchair in a few weeks. It really

looks more like a stroller and our PT recommended this one over the MacClearan

(sp?). It is expensive ($3k+), but public aid has picked up the expense for us.

Go to www.ottobockus.com to get more info on it.

Jody