Monday, September 10, 2012

We are wearing a new accessory!

The day is here!  I woke Reagan up Wednesday morning singing good morning to her as usual but got all excited and told her that it was a BIG day.  I was sad thinking about the afternoon and R getting fitted for her new accessory that will make an appearance in her life for the next 3 to 5 months.  We got to the Cranial Center and immediately went into the small room where our Cranial Remolding Specialist handed us the smallest pink helmet I had ever seen.  She began to go over some things with us about her wearing schedule, cleaning and do/dont's.  She had us hold Reagan while she put the helmet on her for the very first time and then she had Zach and myself each do it for practice.  It was not hard at all.  once the helmet was on, it did not even phase her.  She did not even realize there was anything on her head.  We spent about an hour going over more things while our specialist did adjustments to the helmet so we had a perfect ft before we were on our way with new StarBand.  For the next 4 days we will gradually work up to wearing the helmet 23 hours a day.

Our Sweet Baby Girl in her StarBand

Helmet Fitting

Wednesday: 1 hour on, 1 hour off, do not wear at nap or at bedtime
Thursday: 2 hours on, 1 hour off, do not wear at nap or bedtime
Friday: 4 hours on, 1 hour off, start wearing at nap and bedtime
Saturday: 8 hours on 1 hour off  
Sunday: 23 hours!

Reagan wore it home from the appointment, which is only about 25 miles from our house but being that it was 5pm - rush hour, it took about an hour to get home.  She rode with Zach and about 10 minutes into the drive he calls me and says it must not be bothering her because our little angel is sound asleep!  This made me happy knowing that it is not hurting her to wear it!  We decided it would be best to keep her at home the next 2 days to monitor her closely (look for redness) to make sure she did not break out or it was too tight and also because with the schedule above, we really did not want daycare to have to mess with it.  Zach stayed home with her on Thursday and I stayed with her on Friday.  She did perfectly fine...piece of cake!  I even had some time on Friday to jazz up her helmet a bit.

Mommy added a butterfly while I slept!

Friday, Saturday & Sunday nights were great.  She slept her normal 10 to 12 hours without a peep!  The only thing that bothered me was a red spot on her forehead.  We are guessing it is from her sleeping on her tummy with her forehead pressed against the bed all night.  We go in on Friday for our first check up so we will address it then.

Now for it to start working so we can see her beautiful little head again.

Our little Aggie Cheerleaders cheered hard but we still didn't pull off a win against Florida!

On a side note...they were definitely telling the truth about it smelling like a dirty foot after wearing for a few hours.  The rubbing alcohol is a life saver and gets rid of the smell instantaneously. 
Let's just hope it continues to work. 

More updates soon....

XOXO, Julie

Tuesday, September 4, 2012

One More Day!

Tomorrow is the big day!  We get our STARband around 4pm.  As the day gets closer, I am starting to have fears of how our sweet little girl will handle having to wear this new accessory.  When I went to wake her up this morning, all I could think was just a few more mornings of head freedom.

One of the before pictures we took at home at 4 months.

I saw this on a blog I recently read related to plagiocephaly and one mom's journey and thought I would try it out.  Zach did this in photoshop, of course hers will be pink but isn't she precious?!

I will keep you all posted after our appointment tomorrow. 
Until then, I will continue to snuggle my baby girl.

Friday, August 31, 2012

Reagan's journey to a round head!

Reagan has always been a really great sleeper, since she was born.  She started sleeping through the night at 2 months and we have not skipped a beat on this schedule...(knock on wood).  When we go on road trips she just sleeps her little heart out.  Keep in mind this is all putting pressure on the back of her head, which at the time was no big deal.

At Reagan's two-month checkup, our pediatrician had some concerns about her developing a flat spot on the back of her head but told us to just increase tummy time and we will just check on it at her 4 month checkup. Over the next 2 months, we increased tummy time, slept her on her side and emphasized that they do the same at daycare.  Zach and I started noticing it more and more and it was not getting any better. At her 4 month checkup on August 7th, our pediatrician recommended us to make an appointment with the Star Cranial Center of Excellence to get an assessment.  I immediately begin to cry when she told me this because all I could think was my poor baby will need to wear a helmet and how could I have done a better job at preventing this!  Our pediatrician immediately consoled me by telling me about her own daughter that had to be treated with a STARband (helmet) at the same age.  Although it was very hard to make the call, as soon as I left the pediatricians office I immediately got on the phone with the star center to set up an appointment for an assessment - I thought if this is what needs to be done, I want answers soon before she got any older.  They were able to get us in the following week.

On August 16, 2012, we met with an orthotist at the Cranial Center of Excellence, where they measured Reagan's head and performed the scan.  The clinician evaluated the scans and said that there were 3 levels and Reagan was not quite one of their severe cases but was in the middle (moderate - meaning proceed with treatment).  She had plagiocephaly (flat head).  The scans showed that Reagan favored her left side more, so in turn it was flatter on that one side.  Her thought was to contact insurance because this type of treatment has to be authorized prior to starting and once they gave the ok we should come back in to get new measurements and unless by some miracle Reagan's numbers reflected a tremendous improvement then she would be fitted for a StarBand (helmet), the cranial remolding orthoses.  After research, I decided to not wait on the insurance and get Reagan back in for treatment.  Reason being, the insurance can sometimes take up to 30 days and if treatment is what she needed I wanted to start it when she turned 5 months and not wait any longer, I mean we are going to do it if the insurance pays for it or not. 

This was not an easy decision and I have had very mixed emotions about it.  We went in on August 27th and the center performed more scans and measurements to see if there was any progress.  There was indeed some progress but not enough to make a difference in proceeding with treatment.  The orthotist told us that Reagan would be fitted for her helmet on September 5th and she would have to wear it anywhere from 3 to 5 months depending on her growth and us following the wearing schedule.  The helmet will be worn 23 hours a day and taken off for 1 hour each day for bathing, cleaning the helmet and our head kisses and snuggling.  Being a Mom, my first thought was how she was going to adjust to having this thing on her head that long each day for months!  Although they told me the babies adjust to it very quickly, I am still worried and sad about it.  So, now we wait....until we receive our helmet on September 5th, Reagan's 5 month birthday, we are just loving on our little girl and giving lots of kisses on her sweet little head.  I feel confident that we are doing the right thing and I know that in just a few months she will have a perfect little round melon!

With this blog, I will attempt to chronicle Reagan's process with her STARband, in hopes to help other teary-eyed Mom's that want to know more about this process.

Before pictures to come....