The Journey Begins

Well, today was the day.  The day that I have been both dreading and looking forward to for some time now. Rhett got his helmet today.  And so, the journey begins...

When my alarm went off this morning, I was already awake.  I had been up thinking worrying about how today would go.  I was so anxious.  I was worried for my little boy.  Worried that he would be uncomfortable.  Worried that he would cry.  A lot.  Worried that I wouldn't know how to comfort him.  Worried that he would not understand.

Even though I was nervous, I was ready to begin this journey so that we could begin to help our little boy as soon as possible.  I'm so glad that Tim was able to go with me today.  He was calm, positive, and kept me from freaking out!  He is a rock for our family, and I needed him today.

After bad SA traffic, a bathroom stop, and a stop to feed both babies, we finally made it to Austin!  Here is Rhett getting his helmet on for the first time.

He looks really upset, right?  HA!  It's like he didn't even care!  

The proper name is not actually 'helmet' but rather 'band.'  The fancy, medical name for it is a cranial orthosis.  Many have asked how it actually works.  The band works by applying a mild holding pressure in regions where the head is already too prominent, while encouraging growth in the adjacent flattened regions.  The band is used on infants between 3 and 18 months of age because this is the period of rapid brain growth.  Because each child's head shape is unique, each band is customized to address the infant's specific deformity.

 Isn't he cute?

After the clinician put the band on, we had to hang out in a waiting room for 15 minutes.  They wanted to make sure that Rhett didn't have any skin reactions to the band, as well as make sure that the measurements were correct.  I was really doing okay until they left us alone in this room.  I was holding Rhett and went to kiss his head.  And my lips were met with plastic.  I got a little emotional and frustrated that we were having to go through this.  Tim gently reminded me that it is not forever, and that we are doing the best thing for Rhett.  I kissed his cheek instead, and got a little smile from my sweet boy.

 Rhett showing daddy his band

 Here the clinician is marking the band so that she can trim the inner layer to fit better

Rhys just hanging out watching her big brother

 Waiting while Rhett's band is getting trimmed

 precious baby girl

 Daddy making us laugh!

 "It's okay Rhett, your head will be okay."

 "Just suck on my finger..."

 "You can suck on my thumb too..."

"Or even my arm..."

They were so funny while we were waiting.  The clinician finished trimming the band to fit Rhett perfectly, and then Tim and I both had to practice putting it on and taking it off of him.

 Mommy practicing

They also took measurements of his head again. They will do this every week when we visit. 

Rhett will wear his band 23 hours a day.  We will take it off for one hour a day.  During that hour Rhett will get a bath and we will clean his band.  We will also take it off when he works with the physical therapist each week, and during the day when I do his exercises with him.

Rhett did okay wearing his band in the car on the way home.  It was SO hot today, and he was sweating pretty bad.  He slept most of the way home though.  When we got home, it was time for a little oatmeal cereal and bananas!

YUM!

After a yummy dinner, daddy gave Rhett a bath and I cleaned the band.  It has to be cleaned with rubbing alcohol and then sat out to dry.  He only wore it for a few hours today and it already stinks.  Such a boy already!

Since the band and Rhett's hair have to be completely dry before we can put it back on, I used the extra time we had to snuggle and kiss all over his little head.  And he let me.  He is my cuddle-bug and I just enjoyed every moment of it!  I nursed him and Tim put him to bed.  That nervous feeling came over me again.  I was worried that he wouldn't be able to get comfortable, wouldn't be able to sleep, etc.  He fussed for about 3 minutes, and then....we saw this:

That is a pic from our video monitor.  And yes, he is OUT!  

I am so very thankful that today went so well.  Thank you all for your prayers.  We will keep you posted on Rhett's progress.  We will be going back to Cranial Technologies weekly to get the band adjusted.  They told us today that we should see progress within a week.  That is amazing to me, and I'm truly grateful for modern technology.

And so, the journey begins...