This is our story of trying to round out our 10 months old flat head. He has mild brachycephaly\plagiocephaly and will wear a helmet. We hope to share the information and research that we find along the way and continue to learn as we go. Hopefully we can be a source of comfort to you in your own journey as we seek our own comfort in knowing that we're doing what's best for our son.

Monday, January 31, 2011

A Head in Pictures

Birth- 3-18-10
VERY coned head

3-30-10
Nice & Round


5-10-10


5-28-10
Little flattening happening


7-5-10
Looks pretty good from this view


8-15-10
Almost 5 Months Old (Just sitting on his own- still sleeping on his back)
This is where it gets noticable
We asked our pediatrician SEVERAL times about the shape of his head.
He said 'as he sits, rolls over, plays on his tummy, etc it will round on on its own. 
Oh, if we only knew then what we know now.


8-22-10
Ped says 'symetrically flat' not to worry.


10-27-10
Can roll over now.
Sleeping on belly at 6 months.

11-15-10

11-30-10
Started Crawling at 8 months

12-15-10

12-31-10

1-26-11
Now, this is a great improvement over what it WAS at it's worst.
It did round out, but it's still flat.
It's almost as wide as it is long, and that puts his percentages way up.
They prefer your percentage to be around 81%.  That's BJ's goal for Easton.
His is about 97%.  100% is 'flat'.

These pictures will be a good reference point to measure where we've been and where we go.

MIGHT I ADD- THIS IS THE CUTEST KID EVER (CKE)----flat head or not, helmet or not!

Helmet tomorrow.  Mixed Emotions.

Wednesday, January 26, 2011

Head Rounding in Progress

 
We went today for the results of Easton's CT.  The good news is that Easton's brain is functioning properly and had perfect growth and the sutures on his brain are still open. 




For a little lesson on the skull- you have sutures that run along the front, sides and back of the skull.  They are held together by fibrous connective tissues.  Those sutures don't typically close until about 18 months of age.  Sometimes they close prematurely and can cause problems.  One problem being that there is not enough room for the brain to grow or 2 if the head does have flattness, it cannot be corrected once those sutures are closed.  With that being said, Easton passed both of those test.

On to the 'other' news.  I won't call it bad...even though it's not what I wanted...but it needs to be done.

Dr. K (Craniofacial Plastic Surgeon) was very happy with Easton's scan.  Normal brain function and open sutures are a HUGE positive when working with a flat head.  There was no reason for me to believe he didn't have normal brain function- I really didn't even know that was a concern, however, to KNOW that everything is perfect in his noggin makes me very happy.  On to the cosmetic part of having a flat head.  He said that Easton was about a 5 on a scale of 1-10.  He said if we were happy with the shape of his head, we could just leave it alone.  He did say that there may be difficulties when he gets older with althletic helmets and shaved heads, etc but it was completely up to us.  The question he wanted us to ask ourselves  is 'would we be ok with Easton's head if it did NOT change shape?'  Lance's answer was 'no'. 

The window of time to do helmet therapy is idealy starting around 5 months because the child goes through so many growth spurts during this time and the change is faster.  They will not start helmet therapy after 12 months of age.  We are right at the line.  He did say that we would see some improvement, probably not a 'perfectly' round head, but improvement.

We met with an orthotist (BJ) after our appointment with Dr. K.  I was not looking forward to this visit based on our last visit with a different orthotist.  However, the minute he walked in the door he was warm and inviting and comforting.  He was first and foremost concerned with Easton and Easton's well being as well as making sure we knew that this was OUR decision and he was not going to push us one way or the other.  He wanted to know the results of the scan; when I told him the brain function was perfect and the sutures were open he said "well, praise the Lord, that's the most important thing."  He had me at PTL!  I knew this was our man.  I truly believe that God led Lance to this place for a reason.  Lance had done PLENTY of research on helmets and where he wanted to take Easton, so I have no doubt that God used is research to send us there.

After some discussion, we decided to go through with the helmet.  They did a scan of Easton's head by way of a digital device that looks like a radar gun.  He made several passes over Easton's head creating a digital image on his computer to send off to the design center to custom make Easton's helmet.  After a few tries we got a good scan and were on our way. 

This is BJ.  He's our new best friend.
We're going to be seeing lots of Mr. BJ.


They put the little mesh hat on his head so it flattens his hair and gives an exact shape in the scan.



 
We chose a baby blue helmet and we'll pick it up next week.  He will begin his treatment with a week transition period where he wears the helmet 1 hr on 1 hr off for a day then gradually build up to during naps and then night time.  After that week he will wear the helmet 23 1\2 hours a day for 4-6 months.  He said we should see some results after the first full week of treatment.  I'm encouraged that we will see results that fast.  He also feels that even just the slightest improvement is going to make a big difference!  The results typically slow down towards the end of treatment so it will be interesting to watch how he progresses.  He's very hands on wanting to see us every few weeks to take measurements and make any adjustments necessary.  We will also see Dr. K monthly to do the same. 

I'll have to say I felt defeated when we left the doctors office.  This is not something I wanted for Easton.  This is not what I would chose for my son.  However, if his head were to never change and someone made fun of him one day for the shape of his head, my  heart would break.  I want to know that we did all we could for him to correct this problem. Cosmetic as it may be, I still think it's necessary for a boy to have a nicely shaped head.  His daddy definitely feels that way.  So, did I want to do this?  NO.  Do I want to have to deal with this?  NO.  But, my child is healthy and happy and smart and this is what needs to be done.  It's really no different than braces or glasses if you think about it.  Just a little less common than those 2.  I do feel blessed that we are able to provide this treatment for Easton, that God led us to the 2 doctors that we saw today, that his CT was perfect and that God gave Lance the nagging desire to do something about Easton's head.  We truly are blessed!

So, we begin our head rounding journey.  I'll keep you updated with our progress! 

Monday, January 24, 2011

Head CT

As of last night, Sunday night, I had decided to go with Lance on his opionion to sedate.  I can't say I was happy with the decision but it was made.  I prayed, I tossed, I turned, I prayed, I felt sick to my stomach, I prayed.  Every time I woke up I was thinking about all the 'what if's' of today.  I thought all weekend about the what if's.  I don't know if I should even type this for fear that some might think I'm a loon...but whatever, it's my blog, so...I'll go on.  I kept thinking, what if this was the last bath I gave him, what if this was the last time we took him to church, what if this was the last time I nursed him.  What if, what if, what if?  You see, I have this tiny problem that I can get my mind worked into quite a mess over the what if's.  I'm a worrier by nature.  I'm also a planner. And when I don't know if my plan is going to work, I get a little worked up.  I worry.  So, I was worked up.  To say the least.  Somehow, Lance was cool as a cucumber---or either wasn't letting me in on his feelings; but, I kept praying...and worrying.  I rememeber somewhere  hearing a quote that said 'if you are worrying, you aren't praying' but I assure you I was doing both.  Right or wrong, I was doing both.

As previously mentioned, the last time Easton could eat was 3am.  So I woke him then to feed him and put him back down.  *He did pretty good when he got up considering he didn't have his morning feeding.*  And let me tell you, we.are.routine.  SO, for him to be out of his routine, I thought he did marvelous.  

After we got all checked in it was time to go back.  The nurse had a note in her chart that we were going to try it without sedation.  I told her we had changed our mind...that we didn't want to waste our time or hers if he wouldn't go to sleep.  She said families do this all the time without sedation.  All babies will eventually fall asleep.  *She was very open to the idea of doing it without sedation and very willing to let me try whatever I wanted.*  After asking Lance what he thought and him saying *'it's up to you'* my mind was made.  I wanted to try nursing him to get him to go to sleep.  She did inform us that he would have to be strapped down to a board to have the CT done and I could either nurse him strapped in, try to strap him in awake and get him to fall asleep or strap him in once asleep. 

So, she turned the lights down low, pulled the curtain shut and I nursed him.  He was wild as a buck.  He was tossing and turning, looking around, watching Lance, playing with the rocking chair.  Everything BUT falling to sleep.  When we were finished I could tell he was sleepy so we decided to try getting him to sleep on the board so we didn't have to move him once he was asleep.  The nurse came back in and strapped him in.  Ok, picture the board as a 3 foot piece of wood covered in some swaddling blankets with a foam piece at the head to keep his head still and 12 inch veclro sections to go over his body at his shoulder and at his knees...  He was all strapped in and she laid him across my lap in the rocking chair and we rocked.  I prayed.  Lance played solitare on his phone while we waited.  He was a bit peeved at this point (with me---for chosing to nurse and not get it over with quick).  I rocked.  And prayed.  Rocked. And prayed.  Every time I'd peek my eyes open Easton's were getting a little heavier with each sway of the chair.  I continued praying over him until the snoring distracted me.  I was beyond amazed.  This kid DOES NOT nap...much less strapped to a board, in a strange place with strange noises...and when I want him too.  But, today, the day it mattered, *he did.  HE.FELL.ASLEEP!*

Once he was good and asleep the nurse came and carried him to the CT room (out of the holding area, down a long bright hallway, into a dark CT room and onto the CT table with beeps and hums and noises) and he remained asleep.  Lance held his hands.  I stood back in awe.  Praising my Jesus.  Almost to the point of tears.  *My child was asleep on the CT table without meds.*  I could not help but stand there and smile as I watched the red laser pass over his face and scan his little head.  God heard my prayers, our prayers, and answered them.  Easton stayed asleep through the entire procedure only waking up when the tech undid the velcro on the board at the end. 

I am amazed.  I am in awe of the power of prayer.  We prayed.  He answered.  I want to shout it from the roof tops "look what my God did!"  I want to paint my truck "God answered my prayers."  I want to put out a news cast.  I want to tell everyone exactly what I prayed for and got exactly what I asked for.  I want to sit at the feet of Jesus and praise Him for who He is and for His power.  There is no doubt to me that He was present with us today.  I have no doubt that it was ALL HIM who got Easton to sleep.  I have no doubt that it was HIS plan, not MINE, for me to nurse him and not have him sedated.  God is so good.  He is so faithful.  He is so compassionate.  He is so gracious.  He is so merciful.  He is love. 

Saturday, January 22, 2011

CT Scheduled

As I'm sure most of you have noticed, Easton has a bit of a flat head.  It's been a nagging issue in our house for some time now. We've asked his pediatrician for months what he thought about it and he kept saying 'when he starts sleeping on his belly, sitting up, crawling, etc it will round out.' Well, he's been doing all of those things for almost 4 months now, and it's still pretty flat. It's not near as coned as it used to be but it's still flat in the back. We visited an orthopedist (the man who SELLS the helmets) to see if he thought Easton was a candidate for a helmet and he said that he was (big shocker- that's his money maker!!!). I'm sorry- I'm a little bitter about that whole situation.  He took some measurements of his head and his head is about the same size width as it is length so a helmet would help mold it into a more round shape.

In order to see if he is TRULY a candidate for a helmet we first have to get a CT scan of his head and then meet with a Pediatric Plastic Surgeon who will then refer us to a specialist.  They would then take a digital scan of Easton's head and fit him with a helmet that he would wear for 3-6 months. 

With that being said, we go Monday for the CT.  This absolutely scares the bajeebers out of me.  I don't want to do it.  I don't want him to have to be sedated to have this scan.  A friend at his school had this same procedure on her son and she told them she didn't want to have him sedated so they allowed her to nurse him and get him to sleep and then they did the scan.  My prayer is that this will work on Easton as well. 

He cannot have anything to eat after 3am on Monday morning.  The procedure will be at 8am.  My prayer is that we can get him up a little earlier than normal and once we get to the hospital he'll be so tired and hungry, he'll nurse then konk out.  If this does not work we would have to wait 4 hours (so his tummy is empty) and do the procedure with the medicine.  Now, this is NOT full anesthesia, this is simply a little 'elixir' that will make him sleepy and still.  So, that helps me, but still, I want to try it first without the meds and see if he'll be still.  If he does have the medicine he can't go to school (and I can't go to work) so we might as well try it first without the medicine. 

I've been praying about this day for a while now.  We've had it scheduled for 6 weeks I guess.  I don't think I really realized just how nervous I am about it until today.  The what if's fill my mind and my thoughts daily.  I know that's Satan.  I know that's fear and fear is not of God.  I know these things, but I still think on them.  I wish I could banish them from my mind and thoughts.   I can really get myself in quite a mess when I let my mind wander. 

Instead of continuing the what if's I will say this...

Please be in prayer for our day on Monday.  I will be a nervous wreck.  Easton will not be happy that he can't eat.  Lance will have to deal with us both.  Please pray that Easton will lay on that table for the procedure and be still as a mouse and that he won't need to be sedated.  I'm going to believe that he WILL lay there still enough for them to get the images that they need.  And if he doesn't, please be in prayer for the sedation.  Pray that everything goes smoothly and he wakes up just fine from it.  Just pray.  Pray for us, please. 

We won't have any results until Wednesday when we meet with the doctor.  At this point, I don't even care about the results I just want everything to be ok on Monday.  I'll update as soon as possible on Monday!

We appreciate your prayers!