Maysa on the News - I need your input everybody!

[Guest guest]

Hello everyone,

Maysa's ortho has asked us whether we would agree for Maysa to be

featured on News Channel 9 for wearing a helmet to help correct her

plagio/brachy in the next few days or so. First we were a bit

surprised and after thinking about it for a minute I thought " Hey!

This is our chance to get the word out and to help raise the

awareness about it all " . Therefore, we said that we would agree. I

do not know yet when they will be coming to our house or when it will

actually be aired, but I am quite excited about it all.

What I need from all of you is your input on what I should say,

mention, talk about, show, share. In other words, if your child was

to be featured on the news, what would YOU talk about? I already

have quite a few items on my list but as resourceful as this group

has been, I can't wait to hear from you.

For those of you who need a little history, shortly after she was

born, we noticed that Maysa had her head tilted to the right all the

time but didn't know that she had torticollis. She developed plagio

as a result. At her 2 months check up, the doctor told us to

reposition, showed us one stretching exercise, and told us not to

worry too much about it that it would round out on its own. I

remember asking her what if it doesn't. She said that some people

eventually end up going for a helmet but never explained things the

way I feel she should have. At three months, she was scanned to rule

out craniosyntosis. After that we had to switch insurance because I

was on extended maternity leave and starting seeing new doctors. At

her fourth months check up, it seemed to us that the repositioning

only led to the development of brachy as well. Again, the doctors

brushes it off, tells us to keep repositioning and wait until her 6

months check up. Well by that time, I am really starting to worry.

She has a sister who is 2 years older that her and when I take

pictures of the two of them, I can clearly see that my youngest as a

wider forehead than her older sister...

I then start to look for more information on my own. I go online and

find out that a " flat head " actually has a name: " plagiocephaly " . I

then find out about this group and subsequently providers in my

area. I go and visit 4 different helmet/band makers (The DOCband,

Eastern Cranial Affiliates, Orthoamerica and Hanger). We ultimately

decide to go with Eastern Cranial Affiliates.

Maysa starts her treatment at 5 and a half months and does pretty

well the first month she is in it. During her second month, her

growth slows down a little, I break one of her ear flaps while

cleaning the band and I start to worry that she is not going to get

the correction we are hoping for. At her two month rescan, the ortho

says that she has outgrown her helmet sooner than expected and that

he will make another one for her free of charge. He things that she

will be in it for another 2 months or so. Maysa is now 8 and a half

months old, in her second helmet and looking so much better than when

she started treatment. The first helmet took care of the plagio, we

are hoping that the second one will correct her bracky.

Sorry if this is long, I really tried to give it to you in a nutshell.

I look forward to hearing from you,

Leila, mother to Maysa