6 More Weeks of Helmet

As Natalie is starting the 18th week of wearing her star band, I’m a little disappointed to be told today at our appointment that she will be wearing it for at least 6 more.  It’s not unexpected, though.  She’s growing very slowly now but not without progress in the star band so we’ll keep doing it.  Several of her numbers at today’s checkup were within normal limits but her anterior symmetry(front of the face) number could still come up a little more.

I usually see the cross section of the head that just shows the shape in general so didn’t realize that her ears were pretty far off from symmetrical.  This scan shows where her ears were on day 1 in red and where they are today in blue.  Pretty cool to see the progress over the last 4 1/2 months.

 

 

For those that are interested, here’s the section I usually come home with.  It shows Day 1 in red and today in blue.

And here’s a nice round baby head shot!  Keep on growing, Natalie!

Happy Late First Birthday, Natalie!

Last summer, we were surprised with the plus sign on a pregnancy test.  My first thought was, “Oh, it’s Natalie Grace.”  Strange thing to say since we weren’t thinking of having any more children and, to be honest, it was a bit of a shock.  I had had a dream about her not too long before.  My dreams are often a little strange, though, so I didn’t really take it as a message that we were going to be blessed with another child.  But, blessed we have been.  It has been a crazy year but she has already changed our family.  Our eyes have been opened to disabilities around us, showing me Down’s Syndrome is not something to fear.  Yes, I know she’s behind other children her age, but it doesn’t make me love her any less.  She’s doing exactly what God planned for her to be doing in the time he set aside.  And, because she does things differently than what is ‘normal,’ we treasure those milestones all the more. 

In one year, Natalie has gone from a fragile, quiet, preemie that couldn’t hold her head up to a plump baby whose eyes sparkle when someone is smiling at her and whose voice can hardly be contained when she sees dinner!  I find myself grinning at her throughout the day just to see that face light up.  Zach has discovered the easiest way to make her laugh is to burp many times in a row.  I’m embarrassed to say that I’ve called upon his services when she’s bumped her head sometimes to calm her down quickly!  He has also told me he often prays for Natalie with his class even a year later.  Our sweet Julia has recently started helping out with reading the 10 books a day.  It’s just so amazing to see both my girls sitting on the floor together reading a book! 

There are still plenty of unknowns for Natalie’s future but there is also peace that she is right where she needs to be.  Thank you to everyone who has shown Natalie so much love in this first year of her life.  We are so blessed to have family and friends who have loved her and us without question!

Amy

Time Flies- 11 months old!

Wow, time has really gotten away from me these past few weeks.  It got me thinking that time with Natalie is a unique gift.  Most parents will say that kids grow up so fast.  The first year is especially quick as they change from a small sleeping-all-the-time infant to a jabbering-into-everything toddler.  Because Natalie’s low muscle tone has caused her gross motor development to lag behind, it’s hard for me to think of her as almost being a year old.  It’s as if her delayed development forces me to pay attention more and definitely causes us to celebrate small victories that might have been missed for a typically developing 3rd child.  Time for her goes a little slower and therefore allows us to enjoy her as a baby longer.

Here’s what’s been going on with us.  The day before our first check up for her star band progress, David had a car accident.  The car was not totaled but it was not drivable for 2 1/2 weeks while being repaired.  I had to postpone our first star band appointment to get some errands taken care of for the car.  We went the next week and Christina said she could already tell the cranial band was helping.  We won’t get Natalie scanned until the next appointment, though.  Tomorrow starts her 5th week of wearing the star band.  Natalie has completely adjusted with only some small redness and extreme smelliness when we take it off of her for the one hour a day.  We had a stomach bug go through the house last week so she had to take a small break from wearing it but we are all back to normal now.

I did end up painting the helmet again so got some pictures of the original pattern.  This second time seems to be working better, though, with very few scrapes in the paint job.  I used a spray primer and then the pink spray paint the first day.  The second day, I brush painted on a varnish.  The third day, I painted the butterflies and another coat of varnish.  I’m still having some trouble at the strap with paint peeling but, for the most part, it’s staying on this time.  I just love seeing her little pink helmet head to match her smiling pink cheeks!

 

 

The big kids are out of school for Christmas vacation and anxiously counting down to Christmas.  I think they tell us several times daily how many more days are left.  David and I will both be working this week so it’ll be a challenge to find ways to entertain them before the big day.  I’m hoping to get some Christmas cookie decorating in and then of course visits from two of their out of town aunts will help.

Below is an impromtu shoot in front of our Jesse tree.  We add a new ornament every night to show how the old testament stories pointed to the coming of Jesus.  So far we have a globe, apple, rainbow, sky full of stars, ram, jacob’s ladder, coat of many colors, burning bush, trumpet for Jericho.  We seem to keep falling behind so will probably end up skipping a few to get to the end.

                         

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

Walk for Natalie

Update: To keep Google from being confused, we are removing references to last years fundraiser and team name.  Please view the 2012 blog entry (http://bit.ly/Mis8tF) and the 2012 team page (http://bit.ly/MirYSZ)

We just decided to start a ‘team’ for the 2011 [fundraiser] in Freedom Park, albeit a little late in the game. Lots of people came up with cute names so I had to go with the alliteration route too.  We decided to go with Natalie's [N---].  We are still new at figuring things out but thought this would be a great way to meet some other families and help raise a little money for Down’s Syndrome.  If you are in Charlotte and would like to walk with us, we’d be glad to have you on our team.  The walk is October 1st in Freedom Park.  There will be kid-friendly events starting at 2.  The walk starts at 4:30 and there is a hot dog supper at 5:30. 
From the [fundraiser] website:  ‘The goal of the Buddy Walk is to promote acceptance and inclusion of people with Down syndrome. Your support will help all people and families living with Down syndrome to enjoy a more successful future.’  More information on the walk can be found HERE.
Here’s a link to our fundraising page if you’d like to donate:  [Natalie's N---]
Thanks for all the love and support we have received with Natalie.  Though we have a long way to go, I can definitely say things are so much brighter today than 8 months ago.
Amy