Sunday, December 18, 2011

A crown for Kingston

I'd like to welcome you to this blog, it's going to be about our youngest son, Kingston, and his journey with the DOC Band.  What is a DOC Band?  First of all, the DOC in DOC Band stands for Dynamic Orthotic Cranioplasty...yeah...big words!  What exactly is going on?  Well, here goes!

Kingston, at three months

Kingston is our third son, a very adorable, peaceful, and joyful little guy.  He came into this world perfectly healthy and as cute as can be!  We soon realized that after we brought him home his swing was his favorite place to be (besides being in our arms).  He slept great in the swing, so great that it became his nightly sleeping place.  When you have three kids I think you sometimes get in survival mode and if you find something that works and enables you to get some more shut-eye you are going to do what works!  Kingston began sleeping full nights in the swing and it was very nice!  So fast forward two months to his two-month check-up and he's still as good as can be.  The doctor made mention of his head being slightly flat, but said that at the moment it was nothing to worry about.  Another two months of swing sleeping and being cradled in our arms on our left side for right hand feeding went by and last week I took him for his four-month check-up (at a new doctor) and had concerns about his head shape.  We had started to notice that one ear was slightly lower than the other and that his head was really flat in the back.  I asked the doctor what his opinion was and he said that Kingston's head was definitely not normally shaped and that in most circumstances he wouldn't recommend any treatment, but for Kingston he thought he would need to see the specialist.  So we left the appointment with a referral to a place called Cranial Technologies located in Austin.  We scheduled the appointment for the consultation and did some research into what exactly we were getting into.  We then went to the appointment and were very pleased with the staff and the way we were treated and informed about the steps we should take to correct his head shape.
Kingston has Brachycephaly with Plagiocephaly.  Whoa, some more big words!  Basically, it just means the poor kid has a really funny shaped head.  What caused it?  The doctor said that she could tell it most likely started with his position in the womb.  The shape of his right ear and shoulder look as if they were crammed together while he was squished in the small space of my belly!  She also said that his right side neck muscles were tight, also known as Torticollis, which can contribute to his preference to turn his head to a certain direction causing part of the flatness.  The other cause is most likely the swing and the way we hold him.  I am not very ambidextrous when it comes to feeding my babies, I have to hold them in my left arm to feed with my right, it's just naturally comfortable.  So therefore another reason his flat spot worsened.  The combination of all these things led to the flatness to worsen and now here we are, on a journey to correct his sweet little head!
We are so thankful that this is his only problem!  He is a very healthy little boy and the shape of his head is not harmful (unless it became extreme) to him.  No brain problems, no sickness!  The journey we are about to embark on will really only be hard on us, the parents!  They say the babies adjust very well to the DOC Band, so that is good.  The band isn't painful for them, which is great.  What will be painful is the price, time, and (most likely) the odd looks from others when he'll be wearing the DOC Band.   I am choosing the positive route.  The cost of the DOC Band is not covered by insurance and the price tag is about $3,800!  Yikes!  We will also be having to travel to Austin at least once a week for six to nine weeks to have the band adjusted, which will be extra gas money.  But in the long run, the cost is nothing compared to being able make sure he has a nice little head.  The time part won't be too hard, but having to make arrangements for trips to Austin each week while having one in school and another in pre-school and working grandparents, it might cause a little stress.  And as far as the odd looks from people, well...I can handle that part!  Thankfully, it's winter time and we can put a winter hat over the band when we go out in public.  Even if we don't, he still has the cutest little face and we don't have to worry about anything.
Our next step is the DSi appointment.  This is where they will get a scan of his head shape so that they can make the DOC Band to fit his head and so that it allows the shape to change.  15 strategically-placed cameras will capture an image that is accurate within a fraction of a millimeter! I had read the older process they used to make the helmets was a plaster mold of the child's head, which seems like it could be difficult (especially with an infant) so the digital process seems like a great development!  It's completely safe because it's just cameras.  Kingston should have to wear the helmet anywhere between six to nine weeks.  They say the average treatment time is three months, but since we caught it before it got severe and since he is a younger baby the treatment time is shorter.  They don't treat children past 18 months because the skull finally hardens and becomes permanent.
We were given stretches to do with Kingston to help loosen his neck muscles, which will also help the position he sleeps in.  We have started putting him to sleep in his crib and he is doing great.  He spends more time upright as he gets older, we have a Bumbo and a Jeep Walker that he likes to wheel around in with the help of his silly older brothers.  I am glad to know that there was/is a reason he did not enjoy tummy time like his brothers did.  The doctor said that because of his head shape it made it a lot harder for him to actually try to lift his head up while on his belly.  We are to continue tummy time as normal, so that he can work on those muscles.
Now, it's on my mind as to how we will decorate his DOC Band.  They actually have a calendar with pictures of DOC Band babies, and it's pretty cute! many ideas!  So stick along with us to see our journey.  I think that we will refer to the band as Kingston's crown, because Wesley likes to call him King and every king needs a crown!  :)  We would love your encouragement and prayers during this time.  We are so glad that this is not anything worse and that he is still a healthy, sweet baby.

Oh, and I forgot the part that he will be having to wear the band for 23 hours a day!  Sheesh!

Here are some links that give some great information on what exactly is going on:

About Plagiocephaly

Before and After pictures

A business that donates decoration for the Doc Band

**Stay tuned for the next blog:  I will post pictures of Kingston's Photo Study (his head shape pictures) so you can see exactly what we are talking about.**