Star Band Week One

Natalie started wearing her star band on November 15th!  My first try at putting it on her made her cry but I’ve gotten better as we’ve gone along and we’ve had no tears since.  She’s been handling the change pretty well.  We started with one hour on, one hour off and today two hours on, one off.  The first day, she cried a little bit when she was on her back with the helmet on.  Today, she fell asleep on the floor while playing with it on.  Tomorrow she’ll wear it 4 hours on, 1 hour off and during naps and night time sleep.  Feels like a big jump but I think she’s already getting used to it so hopefully it won’t disturb her sleep.

 

Putting on Natalie’s Helmet

She’s also rolling all over the room now.  She just started rolling last week so I was a little worried the extra weight of the helmet would slow her progress.  It doesn’t seem to be bothering her a bit.  The pink helmet is easier for me to see pop up off the floor from the other side of the room so now I’m actually catching her rolling more often!

I couldn’t resist painting the helmet so we had a wild day once we got the star band.  I needed to get it painted and dry as fast as I could.  I like the way it turned out but am not sure if the paint will stick the whole time she has to wear it.  So far so good.  I taped it all up and spray painted the whole outside with a pink paint that said would stick to ‘most’ plastics.  Then I used acrylic paint for the butterflies and flowers and finished up with varnish to hopefully keep it from chipping.  We’ll see how it goes.

So, we’ve officially started the process.  In two weeks, we have an appointment in two weeks to check on her progress.  Though I’ll miss seeing that little head of hair, I think the cheeks make up for it!

Amy

Scan Day

We just got back from Natalie’s new scan for her cranial remolding helmet.  It was very quick.  We’ll go back in a week and a half to get the star band fitted and she’ll be wearing it from then on.  I did ask if it would hinder her progress with physical therapy.  It might take some getting used to but since it weighs only weighs 1 1/2 oz hopefully it won’t bother her that much

Natalie in the waiting room before and this after missing her morning nap!The back of her head on 11/2.

Laying in the scanner.

Natalie with Julia after the scan.  We picked the band with ‘sweet hearts’ instead of camouflage and soccer balls so Zach was not willing to be photographed!

The Helmet Journey Starts Tomorrow!

I am writing now as an amazed and stunned woman.  Some of you know this story but I’m starting from the beginning for any who might be reading from links at Alexandra’s P.H.A.T.E.   What I find so cool about this story is that we really thought it wasn’t possible at all but God had different things in mind for us.

Last Monday, I took Natalie to Level 4 Orthotics to discuss whether she needed a cranial remolding helmet or not.  We’ve been noticing a flat spot for awhile but had hoped it would get better with her learning to sit up more.  Since she is not sitting up yet at 9 months due to some delay in gross motor skills from Down’s Syndrome, it seemed to David and I that the flat spot was getting worse.  Natalie has also loved to look right from the day she was born.  Our physical therapist is always checking to see if she has torticollis and it seems Natalie just likes that side better.  After being scanned, I was told that her head shape was a Level 3 out of 5 in terms of severity.  Below is an image of her head shape currently.  When we started talking about cost, it became clear that it was not something we could afford.  Our insurance has a very high deductible so we would have to pay 100% of the cost.  Natalie needs physical therapy right now to help with her low muscle tone that comes with Down’s syndrome so that had to be our top priority in terms of finances.

I decided to look for help on the internet.  I happened to post on Facebook about it and my sister-in-law suggested looking for a used helmet.  Not sure that it was even possible, I started searching anyway.  I found a group called Alexandra's P.H.A.T.E., a group that, through a partnership with Orthomerica, is able to provide 12 helmets a year.  I e-mailed Gary Tate Natalie’s information.  One week later, I received a call from Level 4 saying that through Blake Norquist, Orthomerica had agreed to provide Natalie with a star band.  We are so thankful and stunned at how quickly this all was orchestrated!  We have an appointment tomorrow to have her scanned again since babies head shape grows so fast.  Can’t wait to take lots of pictures of the process!

Amy