I took Elijah to the doctor today. His home health nurse and early intervention seemed concerned about the shape of his head. At 24 weeks, when most babies are still floating around in the womb, Elijah was placed on his back for 24 hours a day. This was due to his chest tube and the ventilator. After coming off the vent he was placed on CPAP. This put constant pressure on the sides of his head. So his head has always been shaped funny and he has torticollis (tight muscles in the neck). We had hoped that his head shape would go back to normal, but it don't seem to be doing that. A baby's head is "moldable" until the sutures in the bones close. This happens around 18 months of age. So it is very important that we do something now or his head will always be shaped funny and this can cause him lots of problems later on. This means that Elijah will have to wear a DOC band on his head, think helmet.
He will wear it 23 hours a day until his head is reshaped. The bad thing about this is that the closest people who do this is in Charlotte, NC. It will mean weekly or biweekly trips each week, because the band has to be constantly adjusted. It is times like this that I hate the area I live in. We have had to travel so much this past year to see every specialist imaginable. It is going to be hard on us financially and we will probably have to rent a car each time because my old van is about to wear out, it is very close to going into the shop and I am very afraid of what they will say when it does! I will have to make these trips by myself because Brian won't be able t take off work, and each time he takes off sets us back. I know I need to continue to trust God that he will provide as he has done since the day Elijah was born. I get frustrated and worried sometimes but I don't want to let my faith in God waver. How can I when he has done so much for us. If not for God's power and grace Elijah would not be with us right now, and with a healed heart! It is by Gods grace that we are still in our home, and not even late on our payments, when Brian has took a HUGE paycut since being laid off at General Dyanamics and me unable to work. I know things will work out, and I thank God for all he has done for us, and all he will do!
If you want more information about the DOC Band go to www.cranialtech.com this actually affects full term babies as well, due to being on their backs alot! You can also see pictures of the bands on this web site.
1 comment:
I know what you are going through! My second child had
torticollis ... we went to Atlanta which was closer to have
a computer generate her head shape and send it to NC
for a helmet. Crazy! I had to do neck exercises... stretch
that muscle... then the helmet... and people would stare.
But now she is two and all that hard work paid off... So hang
in there!!! ( Tip: if your baby just screams and whales from
having their neck stretched.... then let them go to sleep in
your arm.... let their shoulder drop under your arm so that
their head is on your forearm... then you can let the shoulder
drop lower and lower as they sleep and it will stretch the
muscle while they are relaxed ). This is just my personal
advise.... what worked for me. Because my best friend's
baby had it... and she had no luck with the stretching
physical therapy...... the baby just tenses up and fights
it... and I personally think it does more harm. So I let my
baby sleep through her "stretch" sessions while I held her.
I did have to WEEN her from being held all the time later...
but better that than her head being deformed for the rest
of her life.
Visit my blog... I am praying for you.
Kathy
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