Re: Sandy - from Tommy's mom

[Guest guest]

Sandy,

Thanks for the reply. Today is going much better thanks to the

wonderful support from you and the others on this site. I really

don't know what I'd do without you guys!

-Laurie

> > Hello all!

> > Where do I begin? Please forgive me, this will be a book.

I

> > haven't written in forever because I haven't had time to get on

the

> > internet.

> > Tommy got his helmet last Friday. First of all I am

> aggrevated

> > that it took so long. From the day the specialist said he

needed

> > the helmet to the day he actually had it on his head it was a

few

> > days over a month! This is ridiculous!! For such a time

sensitive

> > issue I was appalled at how long it took. One week for

insurance

> to

> > ok it and then 3 weeks for the helmet to come in.

> > As we were instructed Tommy has been wearing his helmet on

and

> > off all week. First 3 hours, then 6, then 12...tonight is his

> first

> > night wearing it all night and tomorrow we begin the 23 hours

> > straight. I am depressed this evening and my husband is sick of

> > listening to me. He went to bed - the jacka@* while I'm in here

> > crying. Don't get me wrong - I love the man - but I'm

frustrated

> > and I feel I'm all alone in this sometimes. No one really

> > understands.

> > I hate the helmet. Oh sure, it's cute I suppose with the

> little

> > cars and planes, but still...it is a big ugly helmet on my

> beautiful

> > little baby boy. When I look at him now, it is so hard to see

past

> > it. When I used to take him out in public I loved it. I always

> > carry him in the baby bjorn looking outward and everyone looked

at

> > us and smiled and commented on how cute he was. Now when people

> > make the same comments I wonder what they are really thinking.

> Many

> > people don't mention the helmet, but I know they are not blind

and

> > must be wondering what the heck. I'd rather they just ask

instead

> > of pretending like there isn't this big eyesore on my son's

head.

> I

> > did speak to a few people about the helmet. Some conversations

> went

> > good, others not so great.

> > While waiting in the waiting room at PT, 2 old ladies

> > asked " What was wrong with my son's head? " - kind of a rude way

to

> > ask, but whatever. So I told them about the torticollis and the

> > plagio, and they asked if I knew about this before he was born.

So

> > clueless!! Then later, while outside Toys R Us, a woman went

out

> of

> > her way to ask about his helmet. She was really nice.

Apparently

> > her 2 month old son has plagio, but not torticollis, and was

trying

> > repositioning to correct it. She's trying to avoid the helmet

if

> > possible. I told her about this group, so hopefully she'll

join.

> > So anyway, back to my depression...last night I was sitting

on

> > the front porch swing with my little guy. He had the helmet

off,

> > and I was snuggling with my face against his soft sweet-smelling

> > hair. Those days are over, now I will have my face against a

cold

> > plastic helmet or scatchy velcro. The sweet smell of baby

shampoo

> > is replaced with the smell of sweat. While I was nursing Tommy

> > tonight, his helmet dug into my arm.

> > Enough about me, what about the poor baby. I try to put

soft

> > cuddly clothes on my little guy, so he is comfy. Now he has

this

> > big uncomfortable helmet on. It is a bit big so when he moves

it

> > crushes his ears or digs into his face. It leaves him sweaty

and

> > hot. It is harder for him to shift his head back and forth (and

he

> > had been so close to rolling over!)

> > A couple of questions (for anyone who is actually still

reading

> > this book!):

> >

> > 1. With the cooler weather coming, how do you handle the hat

> > situation with a helmet? His little ears and the top of his

head

> > are exposed. Can something be put on under the helmet? Or

should I

> > try to find some huge hat to go on over it?

> >

> > 2. How do I keep the velcro clean? It is white velcro. Tommy

> will

> > soon be eating squash and peas and I would be a fool to think

some

> > won't eventually wind up on his helmet - particularly the velcro

> > which he plays with the most.

> >

> > So I guess that is it for now. I will post pictures of him,

once

> > I can get them downloaded off the camera. Despite my sour mood,

I

> > must admit Tommy really is doing quite well with this. He has

been

> > napping, playing, eating as if nothing has changed. I just wish

I

> > could get used to it. I used to love taking him out in public.

> Now

> > I feel like we're a freak show. Everyone is staring and

wondering

> > what on earth is wrong with my baby. I still think of him as my

> > perfect little boy. God, I'm such a downer tonight...I can't

stop

> > crying...maybe I just need sleep. It really could be a lot

worse.

> > Sure his ears are not aligned, but a friend of the family's son

> > literally has only 1 ear. He is 5 and going through some

> > constructive surgery right now to make him a ear. Even though

the

> > surgery should make him look normal, he will still have no

hearing

> > on that side. So really, I am blessed that my son's problems

are

> so

> > small. I really need to cheer up and dig myself out of this

little

> > hole of self pity. It's not that bad.

> >

> > Anyway, any advice on how to cope with this stupid helmet

would

> > be much appreciated. Thanks to everyone who took the time to

read

> > my book. Goodnight all.

> >

> > -Laurie (Tommy's mom)