I hate brachy

[Guest guest]

I am so frustrated! I KNOW I just need patience its just hard when I see so many

posts of people having nice results or at least SEEING results in a short

time...Jayden has had NONE so far. I know he just needs a good growth spurt and

we might see something. But for now...gah! The doc band has caused way less

problems though. I have to take it off several times a day for a quick dry and

it goes right back on but other than that...no staph infections nothing. I have

had fun decorating it although even with Acrylic and modge podge you get a good

week maybe of flawless paint job or its touch ups. I just choose to redo it

often lol. Oh how I wish I could go back and make sure this never happened to my

son. he had the DOC band off for 3 days because of a red spot and since we fly

to phoenix the ortho said to leave it off till she could adjust. Im more

comfortable with his helmet ON and people staring at THAT, then for people to

see what his head actually looks like. It can bring me to tears cause it looks

so bad to me. And of course its hard to hear from a place like cranial tech that

Brachy is the harder of all three conditions to fix and though I might see some

improvement it wont be much because of 1 being so hard to fix and 2 starting

later and having less growth. sigh. Anyway wish us luck. and lots of growth

[Guest guest]

Hang in there – it always seems worse when you are

caught “in the moment”. Tyler has made

some great strides with his Plagio and is just starting to make some really

noticeable improvements with his Brachy. Other than a misshapen noggin,

he is doing really well and I’m sure your babe is, too! After

seeing so many children with serious, debilitating issues when we go to

Children’s Hospital, I feel “lucky” that I only have to deal

with this annoying, lame helmet/band. I don’t like it either, and I

get a little annoyed at times too, but just remember that it bothers us more

than it bothers them!

For the Brachy, I have dealt with similar

frustrations. The band does not “fix” what has happened, it

just helps to improve upon the current shape. The positive is that many

children start to “pop out” in the back as they get a little

older. Since you have the band, you will be able to take advantage of

this time of growth by re-directing it. Tyler has had his

band since January 23rd and we are now starting to see some real Brachy

improvement. (Though, it’s no where near what we are hoping for

either.)

Try to give yourself a day to take a break from looking at head

shapes. (I know - it’s hard for me, too!) I like to leave his

helmet on for 23-1/4 for 23-1/2 hours so I have less time to obsess…

seriously!

In the whole scheme of things, it is (hopefully) only 3

months. Then we can move forward and just enjoy our little ones for the

beautiful beings they are!

Best wishes to you and Jayden. I’m sure it will

work out in the end. Keep us updated – we’ll be happy to

congratulate you when you see improvement!

J Jenna