Re: For Amy in MN

[Guest guest]

Hey Amy,

Glad that he's doing so good with it!! It's also great to know

that you have a lot of support with him wearing the cap - we did too,

but i hear some stories that other family members arent so sure about

it. I kind of miss it... I LOVED to decorate it.

I will not be there THAT early... our PT is set for 10:00 all the way

through June. We normally get there early, but youll probably be

gone.

SMO's are the little brace things for their feet. He will wear them

in place of shoes. They have a velcro strap, BUT they come pre-

decorated. Steve said if I were to get them plain then the stickers

would just keep peeling off. 'sigh' so I have to have ones already

done.

Tru-Colors is great - I too, spent WAY too much there. Average I

think I spent 25.00 a week in stickers. Now, I have a HUGE folder

full of all the extra stickers. I am going to do a scrapbook with

them, with all his pictures of his different helmet designs.

Talk to you soon!

Kim

> > > > Hi Amy,

> > > > I haven't seen you post in awhile and was wondering if Jaden

> > > > received his CranioCap yet? I know it took about 2 weeks

> before

> > > Jax

> > > > received his and figured it had to be about that long by now

> for

> > > you.

> > > > If he received it, how's he adjusting? How about PT, how's

> that

> > > > going? Dr is now back from Iraq, did you ask about

> seeing

> > > > him?

> > > > Hope all is well!!

> > > >

> > > > Kim

[Guest guest]

Hi Amy,

Good to hear that you got the right dosage for the lil guy.

Hopefully it will help!

Things here are a lil bad.. Jax had another seizure tonight. I don't

even know what to do anymore.. they are REALLY bad... i mean, they

are bad REALLY bad to me, but last time they said it was minor and

did nothing. So, I dont know if I should just keep dealing with them

or what. I'll have to call his neuro tomorrow and see. Its stressing.

VERY.

So, are you gonna take Jaden to PT or OT up that way?

Kim

> > > Howdy everyone,

> > > First off, I am sorry I haven't posted much. I have been

> waiting

> > > and waiting for today to come, and that is to find out if Jaden

> has

> > > scoliosis or any other abnormality. I looked at his x~rays

> myself

> > > at some length, determining on my own that he has scoliosis, as

> I

> > > happened to see a slight curve in his spine. I was right. The

> Dr.

> > > said it's mild, and wants to keep a close watch on him and will

> see

> > > him again in 6 months. Since being on this board and on the

> tort

> > > board, I have learned from everyone that a certified pede chiro

> > > might be able to correct this, and I suggested this to him. He

> was

> > > not against it (Kim in MN, it was Dr. that I spoke w/

> > > today). Then Jaden saw his PT, and she asked me what he said,

I

> > > told her, and she said, " off the record, DO IT, get him to a

> chiro "

> > > and she is going to email me w/ contact info for someone who is

> > > qualified to help him. In the meantime, I have been feeling

> guilty

> > > that his tort is not coming along as good as it should have by

> now,

> > > and asked her to give us a goal of how much to do his exercises

> > > every day, she said 8 x's, but that I should actually make the

> > > football hold the way to hold him from now on no exception.

And

> I

> > > have also been using the kineso tape on him for a week but

> haven't

> > > noticed any difference, so we are taping not only the sides of

> his

> > > neck but the back also (his right trap). Good lord, I was

> having a

> > > hard enough time doing the sides, now I have to do the back? I

> > > usually tape the sides when he falls asleep, but how the heck

do

> I

> > > do the back? I'll just have to have hubby help while he's

awake

> > for

> > > this one. And on top of all THIS crap, Ann told me she will no

> > > longer be w/ Gillette after the end of this month, meaning I

> have

> > to

> > > find a PT who is just as good as her w/ Jaden. I heard thru my

> mom

> > > who works at a local hsptl that another local hsptl has an

> > excellent

> > > PT program (Virginia hspt;), so I'll be giving a call over

there

> > and

> > > choose the best one that I think Jaden will agree w/, and then

> have

> > > him/her do a phone consult w/ Ann before our last session w/

her

> > > before Jaden starts PT w/ the new person.

> > >

> > > What a lot to deal w/. I am feeling guilty that I am just not

> > doing

> > > enough for him, and I really believe that his tort won't get

any

> > > better if his scoliosis isn't corrected, because you can see

his

> > > spine on his x~ray tilting in the opposite direction in order

to

> > > accomodate his tort to help " straighten " him out. Am I right

to

> > > think this? I always believed that things need to be aligned

> from

> > > the bottom before they can be aligned up.

> > >

> > > So that is about it. I have also decided to give Jaden Zantac

> as

> > > needed when I see him " chewing " from a burp because I just

don't

> > > want his esophagus scarred. I have to call his pede and get

the

> > > correct dosage, as he's now 17 & 1/2 lbs and just turned 7

> months

> > > old on Monday! YEY! The pede said I'd " know " if he needed it

> or

> > > not when I questioned whether or not to keep him on it, because

> I

> > > believed it was making things worse, but I am seeing that it

was

> > > just a coincidence now. I myself use Zantac, and I don't like

> > using

> > > drugs, so I feel comfortable having him use this because I have

> had

> > > a good response to it also.

> > >

> > > Oh and one more thing, we are trying the tape on the back of

his

> > > neck for now, because she suggested the use of a collar for his

> > > tilt. Can someone explain to me what a TOT collar is or if

> there

> > > are different kinds of collars out there, what their benefits

> are

> > > and how long they are used for and during what circumstances,

> ie:

> > > sleeping, napping, and so forth? and if they interfere w/ the

> > > wearing of a band? I told her I wanted to try the tape first

> > before

> > > we consider that. I mentioned it to my hubby, he grimaced,

> because

> > > apparantly it's hard enough seeing Jaden in a band, let alone

> > > a " collar " . He can't wait for that band to come off, he thinks

> > > Jaden is just so adorable and loves looking at the " whole "

> little

> > > man.

> > >

> > > His orthotist feels his head is coming along nicely and is

> rounding

> > > out well. I told Steve that I still have concerns about the

> > quality

> > > of his cap, but we did speak about it at some length, and I

> > > expressed my concerns about his facial asymmetry. I forgot to

> > bring

> > > Jaden's pics to show his weekly/monthly progress and the one of

> his

> > > improved ear alignment. I'll do that next week. I asked him

> what

> > > measurements they use to tell if his head is " round " , and the

> > answer

> > > he gave was since it's a passive band, they usually complete

the

> > > rounding on their own after they grow out of the band, which

> makes

> > > sense for their band. I'm explaining it crappy here, sorry

> about

> > > that, but it all made sense to me when we spoke. I am so

> mentally

> > > drained right now so it's hard to think, we had a very long day.

> > >

> > > Thanks for listening everyone, I know it's a long post. Please

> > > chime in and answer my questions if you can, I'd appreciate

it.

> > >

> > > ~Amy, mommy to Jaden 7 mo's MN, plagio/mild tort/mild

scoliosis,

> > > started CranioCap 4/23/04

[Guest guest]

Kim,

I just posted a bunch of crap and lost it. Basically, in a

nutshell, I will pick out a new PT for Jaden up north here at VRMC,

and if I don't like him or her I will switch. He doesn't need OT at

all, he's right on target for his age skills I believe.

As for you and Jax, I am so worried for you. Is there any way you

can insist they get him in to Urgent Care tonite and have him

admitted for overnite observation since the seizure was so bad? (I

know I am posting so late you probably won't even read this in

time!) Like you said, you just don't know what is gonna happen next,

so if I were you I'd get his butt back in there. I'd hate for

something major to happen at home! Ask them about portal shunting

of the liver, it can cause seizures. You should NOT have to deal w/

him, nor precious JAX for that matter! Get him in asap, and insist

they get to the bottom of this! Be a hard*ss about it. Sorry, I

know I am being pushy, I am just worried for ya.

I myself had a crying bit tonite, just wanted to give up w/ the PT,

and taping and the band altogether. It's frustrating, all of it.

But I managed to get the sides of his neck taped while he slept

after his bottle (he woke up and fussed, but I got it on), and then

when I put him down I managed to get the tape on his back also.

WHEW. Who knows how long it'll stay on, but I am confident that I

got them in the right spots. And today I coulda swore he was doing

better at the football hold. As frustrating as it is, I'd rather do

the taping at home by myself, rather than bring him somewhere else

to do it, only to have him fuss and cry bigtime. Someone on the

tort board mentioned he was too young for taping.... what?! I

wouldn't think Ann would suggest it if it would do any harm, and I

don't see HOW it can harm him, but only help! The way I look at it,

why should he have to use it after he regresses from his tort? Why

not use it now to help improve it? I just don't get it.

You keep me posted about Jax, let me know what the doc's say when

you bring him in. Like I said, be a hard*ss, and don't take " no "

for an answer. There is no reason why you guys have to go thru

this. I'll be hoping for the best for you all.

~Amy & Jaden

> > > > Howdy everyone,

> > > > First off, I am sorry I haven't posted much. I have been

> > waiting

> > > > and waiting for today to come, and that is to find out if

Jaden

> > has

> > > > scoliosis or any other abnormality. I looked at his x~rays

> > myself

> > > > at some length, determining on my own that he has scoliosis,

as

> > I

> > > > happened to see a slight curve in his spine. I was right.

The

> > Dr.

> > > > said it's mild, and wants to keep a close watch on him and

will

> > see

> > > > him again in 6 months. Since being on this board and on the

> > tort

> > > > board, I have learned from everyone that a certified pede

chiro

> > > > might be able to correct this, and I suggested this to him.

He

> > was

> > > > not against it (Kim in MN, it was Dr. that I spoke w/

> > > > today). Then Jaden saw his PT, and she asked me what he

said,

> I

> > > > told her, and she said, " off the record, DO IT, get him to a

> > chiro "

> > > > and she is going to email me w/ contact info for someone who

is

> > > > qualified to help him. In the meantime, I have been feeling

> > guilty

> > > > that his tort is not coming along as good as it should have

by

> > now,

> > > > and asked her to give us a goal of how much to do his

exercises

> > > > every day, she said 8 x's, but that I should actually make

the

> > > > football hold the way to hold him from now on no exception.

> And

> > I

> > > > have also been using the kineso tape on him for a week but

> > haven't

> > > > noticed any difference, so we are taping not only the sides

of

> > his

> > > > neck but the back also (his right trap). Good lord, I was

> > having a

> > > > hard enough time doing the sides, now I have to do the

back? I

> > > > usually tape the sides when he falls asleep, but how the

heck

> do

> > I

> > > > do the back? I'll just have to have hubby help while he's

> awake

> > > for

> > > > this one. And on top of all THIS crap, Ann told me she will

no

> > > > longer be w/ Gillette after the end of this month, meaning I

> > have

> > > to

> > > > find a PT who is just as good as her w/ Jaden. I heard thru

my

> > mom

> > > > who works at a local hsptl that another local hsptl has an

> > > excellent

> > > > PT program (Virginia hspt;), so I'll be giving a call over

> there

> > > and

> > > > choose the best one that I think Jaden will agree w/, and

then

> > have

> > > > him/her do a phone consult w/ Ann before our last session w/

> her

> > > > before Jaden starts PT w/ the new person.

> > > >

> > > > What a lot to deal w/. I am feeling guilty that I am just

not

> > > doing

> > > > enough for him, and I really believe that his tort won't get

> any

> > > > better if his scoliosis isn't corrected, because you can see

> his

> > > > spine on his x~ray tilting in the opposite direction in

order

> to

> > > > accomodate his tort to help " straighten " him out. Am I

right

> to

> > > > think this? I always believed that things need to be

aligned

> > from

> > > > the bottom before they can be aligned up.

> > > >

> > > > So that is about it. I have also decided to give Jaden

Zantac

> > as

> > > > needed when I see him " chewing " from a burp because I just

> don't

> > > > want his esophagus scarred. I have to call his pede and get

> the

> > > > correct dosage, as he's now 17 & 1/2 lbs and just turned 7

> > months

> > > > old on Monday! YEY! The pede said I'd " know " if he needed

it

> > or

> > > > not when I questioned whether or not to keep him on it,

because

> > I

> > > > believed it was making things worse, but I am seeing that it

> was

> > > > just a coincidence now. I myself use Zantac, and I don't

like

> > > using

> > > > drugs, so I feel comfortable having him use this because I

have

> > had

> > > > a good response to it also.

> > > >

> > > > Oh and one more thing, we are trying the tape on the back of

> his

> > > > neck for now, because she suggested the use of a collar for

his

> > > > tilt. Can someone explain to me what a TOT collar is or if

> > there

> > > > are different kinds of collars out there, what their

benefits

> > are

> > > > and how long they are used for and during what

circumstances,

> > ie:

> > > > sleeping, napping, and so forth? and if they interfere w/

the

> > > > wearing of a band? I told her I wanted to try the tape

first

> > > before

> > > > we consider that. I mentioned it to my hubby, he grimaced,

> > because

> > > > apparantly it's hard enough seeing Jaden in a band, let

alone

> > > > a " collar " . He can't wait for that band to come off, he

thinks

> > > > Jaden is just so adorable and loves looking at the " whole "

> > little

> > > > man.

> > > >

> > > > His orthotist feels his head is coming along nicely and is

> > rounding

> > > > out well. I told Steve that I still have concerns about the

> > > quality

> > > > of his cap, but we did speak about it at some length, and I

> > > > expressed my concerns about his facial asymmetry. I forgot

to

> > > bring

> > > > Jaden's pics to show his weekly/monthly progress and the one

of

> > his

> > > > improved ear alignment. I'll do that next week. I asked him

> > what

> > > > measurements they use to tell if his head is " round " , and

the

> > > answer

> > > > he gave was since it's a passive band, they usually complete

> the

> > > > rounding on their own after they grow out of the band, which

> > makes

> > > > sense for their band. I'm explaining it crappy here, sorry

> > about

> > > > that, but it all made sense to me when we spoke. I am so

> > mentally

> > > > drained right now so it's hard to think, we had a very long

day.

> > > >

> > > > Thanks for listening everyone, I know it's a long post.

Please

> > > > chime in and answer my questions if you can, I'd appreciate

> it.

> > > >

> > > > ~Amy, mommy to Jaden 7 mo's MN, plagio/mild tort/mild

> scoliosis,

> > > > started CranioCap 4/23/04

[Guest guest]

Hi Amy,

you were right, I didn't see this until morning. I am going to call

the neuro here in a few, just to get their input. I don't know if

they will repeat the MRI sooner, but something.. the seizures really

are minor but to ME they are awful... as im sure, you can understand.

It's just seeing the lil guy like that... and then just JOLTING

back .. it's really odd. Scary stuff.

He's been sick again, so maybe that's the cause... it's just UGH get

it right.. figure it out and let us go on. I'm seriously gonna have

to go buy some color for my hair.. it's turning greay. No lie!

Sheesh.

So, did Dr refer you guys to see anyone else about the

scoliosis? I dont really know much about it and what treatment

happens, but did he discuss it at all, on what will happen? Did you

call a chiro? I know that they make the braces right there for

scoliosis, but does it always come to that? Like I said, I have no

clue..

I'm exhausted... watched Jax throughout the night with fear of it

happening again AND im trying to work right now. ARGH. I wish they

would lay me off or something lol.

Kim

> > > > > Howdy everyone,

> > > > > First off, I am sorry I haven't posted much. I have been

> > > waiting

> > > > > and waiting for today to come, and that is to find out if

> Jaden

> > > has

> > > > > scoliosis or any other abnormality. I looked at his x~rays

> > > myself

> > > > > at some length, determining on my own that he has

scoliosis,

> as

> > > I

> > > > > happened to see a slight curve in his spine. I was right.

> The

> > > Dr.

> > > > > said it's mild, and wants to keep a close watch on him and

> will

> > > see

> > > > > him again in 6 months. Since being on this board and on

the

> > > tort

> > > > > board, I have learned from everyone that a certified pede

> chiro

> > > > > might be able to correct this, and I suggested this to

him.

> He

> > > was

> > > > > not against it (Kim in MN, it was Dr. that I spoke

w/

> > > > > today). Then Jaden saw his PT, and she asked me what he

> said,

> > I

> > > > > told her, and she said, " off the record, DO IT, get him to

a

> > > chiro "

> > > > > and she is going to email me w/ contact info for someone

who

> is

> > > > > qualified to help him. In the meantime, I have been

feeling

> > > guilty

> > > > > that his tort is not coming along as good as it should have

> by

> > > now,

> > > > > and asked her to give us a goal of how much to do his

> exercises

> > > > > every day, she said 8 x's, but that I should actually make

> the

> > > > > football hold the way to hold him from now on no

exception.

> > And

> > > I

> > > > > have also been using the kineso tape on him for a week but

> > > haven't

> > > > > noticed any difference, so we are taping not only the sides

> of

> > > his

> > > > > neck but the back also (his right trap). Good lord, I was

> > > having a

> > > > > hard enough time doing the sides, now I have to do the

> back? I

> > > > > usually tape the sides when he falls asleep, but how the

> heck

> > do

> > > I

> > > > > do the back? I'll just have to have hubby help while he's

> > awake

> > > > for

> > > > > this one. And on top of all THIS crap, Ann told me she

will

> no

> > > > > longer be w/ Gillette after the end of this month, meaning

I

> > > have

> > > > to

> > > > > find a PT who is just as good as her w/ Jaden. I heard

thru

> my

> > > mom

> > > > > who works at a local hsptl that another local hsptl has an

> > > > excellent

> > > > > PT program (Virginia hspt;), so I'll be giving a call over

> > there

> > > > and

> > > > > choose the best one that I think Jaden will agree w/, and

> then

> > > have

> > > > > him/her do a phone consult w/ Ann before our last session

w/

> > her

> > > > > before Jaden starts PT w/ the new person.

> > > > >

> > > > > What a lot to deal w/. I am feeling guilty that I am just

> not

> > > > doing

> > > > > enough for him, and I really believe that his tort won't

get

> > any

> > > > > better if his scoliosis isn't corrected, because you can

see

> > his

> > > > > spine on his x~ray tilting in the opposite direction in

> order

> > to

> > > > > accomodate his tort to help " straighten " him out. Am I

> right

> > to

> > > > > think this? I always believed that things need to be

> aligned

> > > from

> > > > > the bottom before they can be aligned up.

> > > > >

> > > > > So that is about it. I have also decided to give Jaden

> Zantac

> > > as

> > > > > needed when I see him " chewing " from a burp because I just

> > don't

> > > > > want his esophagus scarred. I have to call his pede and

get

> > the

> > > > > correct dosage, as he's now 17 & 1/2 lbs and just turned 7

> > > months

> > > > > old on Monday! YEY! The pede said I'd " know " if he needed

> it

> > > or

> > > > > not when I questioned whether or not to keep him on it,

> because

> > > I

> > > > > believed it was making things worse, but I am seeing that

it

> > was

> > > > > just a coincidence now. I myself use Zantac, and I don't

> like

> > > > using

> > > > > drugs, so I feel comfortable having him use this because I

> have

> > > had

> > > > > a good response to it also.

> > > > >

> > > > > Oh and one more thing, we are trying the tape on the back

of

> > his

> > > > > neck for now, because she suggested the use of a collar for

> his

> > > > > tilt. Can someone explain to me what a TOT collar is or if

> > > there

> > > > > are different kinds of collars out there, what their

> benefits

> > > are

> > > > > and how long they are used for and during what

> circumstances,

> > > ie:

> > > > > sleeping, napping, and so forth? and if they interfere w/

> the

> > > > > wearing of a band? I told her I wanted to try the tape

> first

> > > > before

> > > > > we consider that. I mentioned it to my hubby, he grimaced,

> > > because

> > > > > apparantly it's hard enough seeing Jaden in a band, let

> alone

> > > > > a " collar " . He can't wait for that band to come off, he

> thinks

> > > > > Jaden is just so adorable and loves looking at the " whole "

> > > little

> > > > > man.

> > > > >

> > > > > His orthotist feels his head is coming along nicely and is

> > > rounding

> > > > > out well. I told Steve that I still have concerns about

the

> > > > quality

> > > > > of his cap, but we did speak about it at some length, and I

> > > > > expressed my concerns about his facial asymmetry. I forgot

> to

> > > > bring

> > > > > Jaden's pics to show his weekly/monthly progress and the

one

> of

> > > his

> > > > > improved ear alignment. I'll do that next week. I asked

him

> > > what

> > > > > measurements they use to tell if his head is " round " , and

> the

> > > > answer

> > > > > he gave was since it's a passive band, they usually

complete

> > the

> > > > > rounding on their own after they grow out of the band,

which

> > > makes

> > > > > sense for their band. I'm explaining it crappy here, sorry

> > > about

> > > > > that, but it all made sense to me when we spoke. I am so

> > > mentally

> > > > > drained right now so it's hard to think, we had a very long

> day.

> > > > >

> > > > > Thanks for listening everyone, I know it's a long post.

> Please

> > > > > chime in and answer my questions if you can, I'd appreciate

> > it.

> > > > >

> > > > > ~Amy, mommy to Jaden 7 mo's MN, plagio/mild tort/mild

> > scoliosis,

> > > > > started CranioCap 4/23/04