Re: Almost Hopeless - Thanks Sharon!

[Guest guest]

Kathleen,

I do remember writing you a couple of weeks ago. And I also remember

you saying that you live in central PA & were getting treatment in

Hershey. Sorry I asked you a second time - duh! I could have sworn

that when I first joined this group a couple of months ago that there

was someone else in the group from your area. Maybe one of the

moderators of the group knows who I mean. I was hoping that might be

a good connection for you to make - but I could also be remembering

wrong.

Jack's helmet does sound kind of big and cumbersome. It also sounds

sort of difficult to get on - all those bolts and velcro! And now a

chin strap too! No wonder Jack doesn't like it! I'm sorry, I don't

mean to sound so critical, that isn't fair of me.

Our experience has been quite different. Evan's helmet was made in

Cleveland (about 90 minutes away from us). Evan has been in his

helmet for about 7 1/2 weeks. We are just now starting to really

notice some improvement. But he was also just over 8 months old when

he got the helmet. Our helmet is made of clear, lightweight plastic.

It has a big hole cut out on the top, so we can still touch and kiss

the very top of his head and see his beautiful red hair! The helmet

has no padding inside. The helmet is all one piece and has a big

slit on the left side, above the ear. The slit allows us to kind of

open up the helmet to get it on Evan's head. Then once the helmet is

on his head, we

close it with two big velcro straps that go over the slit. Our

helmet is interesting because it has " air bladders " in it. I

personally think they could use a nicer word than " bladders " but they

didn't ask me! The air bladders are attached to the inside of the

helmet and are placed over the parts of his head that are

bigger/bulging. When we put the helmet on, we have to inflate the

little bladders with a special tool they gave us. At first I thought

it seemed so high maintenance and difficult - but it really is easy.

So the air bladders put pressure on the bigger parts of his head and

then, over the smaller/flatter spots on his head, the helmet is

bigger and rounder, so Evan's head will grow into. The pressure of

the air bladders also make the helmet fit securely. Until we inflate

those crazy things, the helmet is quite loose.

Okay, that probably didn't make any sense! But that just goes to

show you how totally different helmets can be!

Evan has adjusted quite well to his helmet. It makes it head sweat a

lot, but he does not seem to be uncomfortable in it. It is also so

light that it has not hindered his movement or balance at all.

I wish I had some great advice for you but I don't. I'm sure that

after all the hassles you've been through, the idea of going through

it again to get a different kind of helmet or a DOC band isn't very

appealing. I suppose that would be another option for you.

Has your doctor had a good success rate with these helmets?

I wish you all the best and do hope you keep us informed. Maybe if

anyone else in the group has a helmet similar to yours, they will be

in touch with you.

Follow your heart and your gut and you will make the right choices for Jack.

God bless-

Sharon & Evan (11-22-99)

>Hey Sharon,

>

>Thanks once again for responding to my email (you also wrote me a

>few weeks ago). Yeah, we are pretty discouraged.

>

>Jack's helmet is made of a thick (1/2 - 3/4 of an inch) styrofoam-

>like padding covered by a heavy plastic shell. The helmet is split

>into 2 pieces but held together by 3 bolt-like pins which have velcro

>strips on either side of them. We are supposed to put the helmet on

>loose (pull helmet slightly apart) and then, once it's on, pull it

>together by sliding the bolts into this groove and then securing that

>by placing a velcro strip over the bolts on each side (where the

>velcro is already attached to the helmet). It's a nightmare.

>

>We live in burg, PA and have been going to the Hershey Medical

>Center (in Hershey).

>

>Is your son, Evan, still in a helmet or the band? How is it working

>out for your family? Did it take a while for him to get used to it?

>

>Again, many thanks for your interest and support. All the best to you

>and your family.

>

>Kathleen

>

>

>

>

>

>

>> I'm sorry to hear you are having such difficulty with Jack's

>helmet.

>> I was hoping it would fit so much better for you after the

>adjustment

>> last week. The helmet does need to be a little bit big - did your

>> doctor/orthotist have anything to say about that?

>>

>> What is Jack's helmet made out of? What about it is so heavy - is

>> there a lot of padding or something? It's just hard for me to

>> imagine and all helmets are made so differently. It just doesn't

>> seem like smart design to make a cumbersome, heavy helmet for a

>baby!

>>

>> Have you asked your doctor/orthotist if they have any suggestions

>for

>> how to improve this situation for you? Where are you located?

>Maybe

>> someone else in the group has a helmet made by the same folks as

>you.

>> Or perhaps you could ask your doctor/orthotist for the names of

>other

>> helmet parents in your area who you could talk to. They might have

>> some practical suggestions for you. I'm sorry I can't help you

>more.

>> Good luck.

>> Sharon & Evan (11-22-99)

>>

>> >

>> >Hi Everyone,

>> >I wrote several weeks ago regarding my (now almost 10 month old)

>son,

>> >Jack. He got a helmet a few weeks ago and for the first week it was

>> >too large and kept falling off. Last week, we went in for a

>refitting

>> >and they made it smaller. It now fits better but still seems a bit

>> >too big. My second concern is that it seems so heavy. It's really

>> >cumbersome and as soon as we put it on Jack, he simply takes it

>off.

>> >They did give us a strap which we tried over the weekend. When we

>> >tried to secure the helmet with the strap, Jack screamed and cried

>> >like never before. The strap is so cumbersome (as is the helmet).

>> >It's a cloth-like strap which goes around the entire helmet. I'm

>> >starting to feel that this is just not going to work for us. My

>> >husband and I are so discouraged. We didn't think it would be this

>> >difficult. Jack will just not keep this helmet on his head. Does

>> >anyone have any suggestions at all or any similar situations?

>Please

>> >help if you can. Thanks for listening.

>> >

>> >

>> >