We've been MIA.. Dakota's update!

[Guest guest]

Sorry I haven't been able to be too active on this site, but it just

moves WAY too fast for me at times! Here is our story, and then

update..

AFter months of fighting, and changing ped's I got a referal to take

Dakota to a plastic surgeon for his plagio problem. He also suffered

from torticolis, and I did therapy at home for it (now resolved!

Yeah!). By the time he was casted he was 6 months, and 7 when he got

his helemt; STAR band. Due to an unexperienced orth, and a 'mis'

manufactured helmet (atleast that's what they told me, but his helmet

still hasn't been sent in to be tested!!) he really didn't get to

wear it much. In my opinion it did more harm than good, but I

eventually won that battle resulting in him getting a second one

(paid for by Hanger). STill it needed weekly adjustments, and he was

8 months by the time he got it. He continued with it, but since it

needed so many adjustments he didn't get to wear it enough. Since he

also needed to wear glasses at the same time we had to figure out how

to modify the helmet to get them on, but we eventually figured it

out! At 10 months he graduated, but only has shown about 65%

correction.

He grew a total of 1 inch all the way around, and filled in 1 cm of

the gap. Still his therapist, his early head start visitor, and a

few others (including myself) still think he needs more correction.

Since his plastic surgeon is no longer in town I am lost on who to

see. At his 9 month check up I asked to ped for a referal to see

another DR, and she said she'd call me with his name/time... Well,

that was TWO months ago, and I JUST heard from them last week!!

That's after calling everyday since my appt, and no luck! Here soon

I plan on changing ped's again, but I can't seem to find one I like

(trying to find one who will give me a good 2nd opinion on the plagio

problem! LOL). NOw, according to the ortho Dakota was seeing she

said that the specialist he will be seeing usually graduates the kids

from their helmets after they have grown an inch around, and like I

said Dakota has done that... So, I know to get him in a third helmet

will be quite a fight considering they are now 11 months old, and

it's been such a long struggle so far.

Maybe it's just all the comments I get that bother me, but people are

always comparing the boys (twins).. Complete strangers are quick to

point out Dakota's 'large' head (they are the same size just

different shapes!), and they don't see that it's from the

plagio problem.. They are ID twins, so they should look MUCH more

alike than what they do! I know I shouldn't compare them, but this

plagio has definatly shaped his head differently. Just nerve racking

considering all the time we put into having him in the helmet, and

not really seeing any results. Honestly, he spent more time out of

the helmet than in it, and I am so disapointed!

What I really need are some winning words in order to convince this

DR to approve another helmet, and for him to convince medicade to

cover it! From what I hear it's going to be a strugle considering

he's almost 1 year old, and his soft spot is the size of a dime now!

Thanks for listining!

Amie, Mom to Dakota (STAR grad), and Dayton!