Thursday, July 18, 2013

Here We Go Again!

When Elizabeth was born, she had many life threatening issues.  A three chamber heart was one of them.  It had to be repaired at birth and is called Truncus Arteriosis.  She will need many more open heart repair surgeries the rest of her life.  She had major lung and breathing issues and a trach.  She was failure to thrive.  She had digestive issues as well and got the bulk of her nutrition thru a g-tube.  Those were the things we focused on and gave our direct, daily, 24/7 attention to.  Praying and trying to find that delicate balance called “healthy” for her, by the grace of God. 

One of the more minor things we dealt with was that she was born with Torticollis.  Basically that means weaker neck muscles on one side than the other.  Hers was pretty severe.  Severe to the point of her only holding her head in one position while awake and when sleeping.  Not being able to turn her head or hold it in the other position at all.  Over favoring one side, only turning her head to one side.  Because of this her soft skull started to deform and misshape.  It actually started to collapse in the shape of a parallelogram, if you were looking at her from straight on, in the face.  

(See how her right eye socket is collapsing and her head so flat on that side at an angle)
Making one eye socket smaller than the other.  Her jaw started to move to one side and the inside of her palate became misaligned.  We started intense therapy to strengthen her neck muscles on the weak side and had her wear a special neck brace that made her use mostly the weak side.  As we were getting her neck stronger the doctors at the Cranial Facial Clinic made her a special helmet to reshape her head and get it back to a more rounded and balanced shape.  

It took many months of wearing this helmet, till, thru growth, the low parts grew and expanded to meet the higher areas and everything looked more normal.  Basically as she grew her head filled in the inside of the helmet.

Looking at her now, one would never know she went thru it all.  I only know as her mom because I lived thru it.  Also, when doing her hair into pony tails and making a part down the middle,  I cannot put a straight part on her head from all the high and low parts still to this day.  Her hair covers a lot of what they could not fix.  You can also see, when you look at her neck, there are good thick neck muscles on one side and not the other.  She is still weak on that other side. 

But….now she is 10 years old.  And it is time to fix the inside of her mouth where some misalignment/misshaping  happened at that time.  Her lower palate is windswept and very narrow.  Her upper palate is also very narrow. 

So here we go again.  William just got out of braces a few weeks ago.  Now is the time Elizabeth has to go into them. 

In the rest of this post will be a few pictures, some of them being the inside of Elizabeth's mouth.  So if they will make you squeamish you might not want to see the rest of this post.  I am putting them on here as someone might be facing the same with their child and like to see what the orthodontist has had to do.  

First, a few weeks ago they did impressions of her palate and teeth and placed in spacers to spread her teeth apart where they would need to put bands around her back teeth to anchor the appliances and braces.

Then a few weeks after the spacers were put in we went early one morning to have everything put on.  

We were at the orthodontist for over four hours having the braces put on and appliances put in.  The appliances will be turned by a key daily to spread her palate out and widen it.  Bless her heart.  She was such a good girl laying there for so long.  With her mouth open wide for most of that time.
This is when they were gluing the brackets on her teeth.

 In the roof of her mouth is the upper appliance that will be turned twice a day with a key for several weeks spreading her upper palate out.  Widening it. She will then need to wear it for four  months while the palate grows back together.
This is the lower appliance that will be turned with a key once every other day to widen her lower jawline.

Needless to say we would appreciate extra prayers for the next few weeks.  She is the one child in my home with low pain tolerance and mix that with impulsivity and behavior issues......  she is in a good deal of discomfort even with pain meds.  She also does not feel like chewing at all.  So we have been feeding her a lot of specially prepared soups, yogurt, pudding, and overly cooked veggies.  She no longer has a g-tube so she needs to eat.  When she feels puny the first thing that goes is her appetite.  She will have to have that key turned daily for several weeks then the appliances will be left there for four months while the bones grow back together again.  :(  Then they can work on straightening and aligning her teeth and bite. 

It is always so hard to see our children go thru things that are hard, uncomfortable or painful.  Hard things that we can’t bare for them or take from their plate.  I am so glad that there are ways to fix these things.   

This will be yet another chapter to her story.  Her life.  Hard things that bring us closer to each other and closer to God.  

God is so good.  I am forever grateful for His mercy and grace.  For salvation and my husband.  For these children that God has blessed us with.  Elizabeth has come so miraculously far.  All the Glory is His and His alone.

Joshua 1:9  Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.

May Gods abundant blessings be poured out from heaven upon you today and always, 



  1. What a brave, strong girl. Sending her all my most positive strength and thoughts. ~ Susan, I have thought it often, you have a brillian spirit and soul.

  2. Thank you Tracey for taking the time to write and encourage us and for keeping us in your thoughts. You are very kind. Blessings.