Front Page Star/ Jaden's story

[Guest guest]

Wow,

I wasn't expecting to see his pic up already! you did a nice

job, thank you!

Jaden's story. What a long story, but I'll do my best to not

babble. My DH and I weren't even in the negotiating phase yet of

deciding whether or not to have kids when I got pregnant. We just

got married in Jamaica on the beach in Negril in Sept 2002, and I

told him quite clearly I was not ready to have kids. I said the

thought of passing a bowling ball between my legs was something I

was not ready to experience yet (thank God for epi's!). But one day

it happened in Feb, just 5 months after we were married. I had a

pretty average pregnancy, all tests were normal, and at the age of

33 this was something I worried about being a first time mom. I

noticed he didn't turn much or shift about much towards the last

month or so. Jaden was then born November 14th, 2003, after 12

hours of being in labor.

I started labor about 1AM that morning. I was up with a book trying

to read because DH was snoring and I couldn't sleep. I felt crampy

and starting timing them. I didn't want to wake up DH yet, cuz if

this was labor, he was gonna need that sleep! But after about 1/2 I

woke him up, asked him to go get his watch. He was almost throwing

a fit about having to get out of bed to go get me something which he

didn't see any sense to, until he finally put 2 & 2 together. Well,

it was a whole different ballgame then, and all the lights in the

house flew on and he went and started the truck. I called the hsptl

and said we were on the way. We made a normally 1 hour and 15

minute drive take only 45 minutes. We passed about 5 cops on the

highway, but no one bothered to pull us over. Made it to the

hospital, and the nurses were almost pushing the epidural on me. I

said no, I'm gonna stick it out w/o any drugs. Well, by 7Am I had

that epi, after having a really bad contraction where it made me

throw up. I said, " get that guy up here and hook me up now " . It

was smooth sailing after that. That is when we decided to call the

parents and let them know we were in the hospital after they got a

good nite's sleep. Jaden arrived at about 1PM in the afternoon, and

I had an episiotomy, and he was delivered via suction. If on that

last push he didn't come, I was gonna go C-section, as he was not

tolerating the contractions well. I pushed like H-E-double hockey

sticks when they told me that. Besides the mark of the suction on

his head, he was born with a beautiful perfectly round head. He

looked just like his daddy.

Fast forward to Feb 2004, near the end of the month. I discovered

the right side of his head was flat! After much research, and my

mother telling me about an article on Dateline NBC, I found the

word " Plagiocephaly " online in their article, and thus started the

ball rolling. I then found this group, and after reading a lot,

knew that I had to take quick action. I noticed that Jaden always

preferred looking to the right when we brought him home from the

hospital, but didn't know enough that it was actually a condition

that would cause Jaden to get a flat head down the road from

sleeping on his back. Well, after reading this board, I learned

that torticollis often times goes hand in hand w/ plagio. I started

sleeping Jaden on his tummy a few weeks after, and bought the

Angelcare Movement Sensor monitor.

I brought Jaden to the pede, and as you all know what I'm about to

say next, got blown off and he said " it'll round out on it's own "

and " his neck is fine, it's not tort " . Well, I knew Jaden did not

have your classic case of tort, it was mild, and therefore the pede

probably was looking for a classic textbook case of tort, as he was

obviously uneducated about this. I brought Jaden back to the pede a

2nd time INSISTING it was tort. Again, " no he's fine, he can turn

his head just fine " . Well, he DID do the right thing by referring

me to a craniofacial surgeon, and I got that diagnosis of mild tort

and moderate/severe plagio. I wasn't happy about it, but this was

our 1st step forward to getting the treatment Jaden needed. I

didn't hesitate once or look back on getting him casted for a helmet

that very same day, and he was fitted w/ his first CranioCap at

5 & 1/2 months old. He took to it like a fish in water. During this

time, he started PT for his mild tort, which is now mostly

resolved. He has full range of motion, but his tilt has come back,

which is very frustrating to me, but we are working on that issue.

We also discovered he has low muscle tone in his left shoulder, and

has mild scoliosis as observed thru his well trained physical

therapist who had such a caring and observant eye. X-rays confirmed

her suspicions. She suggested off the record that we get him to a

chiropractor immediately to get the scoliosis resolved. I just got

his x-rays last week, and are waiting to hear what the chiro says.

He did say quickly he saw some good changes, but has not spoken w/

us yet in depth about them yet.

Exactly 4 months to the date he got his helmet, Jaden was released

and we were told to take it off. We got some great rounding out, as

you will see in his Before/After pics/ CranioCap/Jaden folder. My

biggest regret is not having him wear it for a few more weeks as we

missed out on another growth spurt.

Jaden developed his tort from tight womb constraint and being

delivered via suction (the chiro explained that is 45 lbs of

pressure pulling on his poor little head and neck to get him out!).

Although I am very happy he was delivered safely and healthy, I know

it could have been life or death if he was not taken out in time, I

wish the pede's did a tort/plagio check on each visit after he was

born. Because of their ignorance, I started my own grass

roots " Jaden's Plagiocephaly Awareness Campaign " and give out

literature to parents and health professionals to better educate

them about plagio.

Just before Jaden was done w/ his 1st helmet, I tried w/ all my

might to get him into a 2nd helmet, but to no avail. I kept hitting

walls everywhere and took it as a sign that it was just not meant to

be. Family and friends said his little noggin' looks great. But

every nite I gave him a bath I had regrets. I saw the " squareness "

and still do. Infact, I just took pics last nite and am adding them

to his file under before/after/local helmets/craniocap/jaden. I

would love everyone's opinion on what you think, and if he'd benefit

from a 2nd helmet. I have been meaning to post to the group about

this, as I am still uneasy about his head shape. I keep going back

and forth on this issue. And just for kicks, last week I called his

old pede, and said our insurance won't cover a 2nd helmet w/o a

letter of medical necessity (this was the reason why I couldn't get

him into a 2nd helemt, no one would write this letter), he said he'd

write it. I about fell over. Why didn't I call him months ago! I

could have put Jaden in a 2nd helmet right away! Now he is going on

11 months old!

Because of his low muscle tone in his shoulder and his tort, Jaden

has been delayed w/ his crawling skills. But he is now doing the

army crawl, and gets what he wants. We have been doing lots of

balance ball exercises, kinesio tape, and work every day on his

crawling. It's such an important step that we can't skip crawling,

because I don't want him to continue having low muscle tone in that

shoulder. He shows signs of wanting to walk, which is great, but

even our PT agrees, crawling must come first.

It's been a very long learning experience. As I look back over the

year, Jaden has stayed amazingly tolerant of everything he has had

to go thru. From PT appts/ helmet adjustments/ chiro visits/ pede

visits/ silent reflux/ eczema, Jaden is amazingly beautiful inside.

He is so kind and gentle, and such a good baby. You'd never know by

looking at him that anything is or ever was wrong. We are so

fortunate that all the issues he's had to deal w/ are mild. I

couldn't be prouder of him. And I thank everyone here on this board

to give me the information I needed to get Jaden all the help that

he so rightly deserves. The moderators have been a huge help, and

because of the huge info on this site, I did not hesitate to get

Jaden into his helmet.

Again, please look at his pics in the before/after and let me know

what you all think. Like I said, family memebers think his head is

just fine. Am I being to critical?

~Amy, mommy to Jaden 11 mo's MN

--- In Plagiocephaly , " stripes6060 " <taime@o...>

wrote:

>

> Hi All,

> The Front Page Star for the next 2 weeks is Jaden! Amy, when you

get

> a chance please share your story with us.

> Thanks,

>

[Guest guest]

Hi Amy,

Thanks for posting Jaden's story. I did look at his pics and based

on them and the fact that you're still questioning your decision,

I'd go for the second band if you can. You never know when you'll

hit a growth spurt, and I honestly think Hannah's third band did

more than her second one and she was 15 mos vs. 9 mos at the start.

, mom to Hannah, DOCgrad 7/29

Cape Cod, Ma

> >

> > Hi All,

> > The Front Page Star for the next 2 weeks is Jaden! Amy, when you

> get

> > a chance please share your story with us.

> > Thanks,

> >

[Guest guest]

Hi Amy...thanks for sharing Jaden's story with us. I checked out

his pics and I have to agree with . If you are not happy with

the shape of his head now, I think I would go ahead and push for a

second band. A lot of moms here have had babies Jadens age get

really good correction. Let us know what you decide to do.

Becky ('s mom) in Pgh, PA

> > >

> > > Hi All,

> > > The Front Page Star for the next 2 weeks is Jaden! Amy, when

you

> > get

> > > a chance please share your story with us.

> > > Thanks,

> > >

[Guest guest]

Hi Amy,

Jaden is a cutie. Thanks for sharing your story. I really like your

attitude towards the cause of the tort. Some folks fail to recognize

the urgency of some deliveries may cause some minor issues. You have

done such a great job getting Jaden the therapies he needs. Tort is

very annoying it seems to creep back up when you least expect it.

It's really something that needs to be monitored until the baby is

walking well (ie running) and or 18 months old. We're still watching

na and she's been walking since 10 1/2 months - she is now 16

months. Growth spurts and illnesses tend to bring it back. Keep

working on that crawling - you are so right it will help his upper

body strength a lot!!

Now about the shape of his head. I sense you are not fully satisfied

with the end result that you would like more correction. I agree

with you that there is room for more correction. He looks good -

improved over the beginning of treatment however I do see some

remaining flatness especially in the birds-eye-views.

Let us know how we can help you make the decision or take the next

step in his treatment.

mom to na

DOC Grad

Tort Resolved

SC

> >

> > Hi All,

> > The Front Page Star for the next 2 weeks is Jaden! Amy, when you

> get

> > a chance please share your story with us.

> > Thanks,

> >