One Year Later…

I started to write this a few days ago and saved it as a draft. It was as I was saving it that I realized that I had accidentally written the title as “One Tear Later”.  I had to laugh to myself at how that seemed appropriate. We have shed some tears since last August 15th. Lucy more so than me.

I can’t believe it has already been a year and yet it feels like it has already been many years. I know I have updated several times since and Lucy is still doing great. One year just seems like such a milestone. She still has a good opening. It’s around 29 mm before her stretches and 30-31 mm afterwards. We only have to do them 4 times a week. Of course, these stretches are not my favorite thing to do so we end up putting them off and only do them a few times. She is holding the millimeters nonetheless.

 

It has been discovered that Lucy will need to have her artificial joint replaced with a larger one sooner than we thought.  Originally, we thought she would only need one more surgery when she was done growing, but it seems as thought she will outgrow this joint pretty soon.  Lucy’s jaw can only grow horizontally, not vertically.  And the horizontal growth is iffy, because the part of her jaw they removed had the main growth center in it.  There is another growth center in the lower part of the jaw, but it usually remains inactive.  There are some things we can do, some oils and cold laser, to help stimulate this area to grow, as well as much prayer.  If this growth center does not kick in she will most likely need a replacement in a few years.  If it does it may give us another few more years.  It all just depends on how uneven her face develops.  This is for cosmetic reasons, but functional reasons as well. If one side is not growing it can throw everything off.  I know this next surgery will be easier as she will be older and we will know what to expect.

Our surgeon pointed out on our last visit that we are banking on him being around long enough to do these surgeries.  This blunt honesty is one of the reasons we picked him, but truthfully I had never thought of that aspect before.  He has no plans of retiring, but he said his body/hands may give out before he wants them to.  I am confident God will sustain him or provide a suitable replacement.  There is no sense in worrying about it, especially since there is nothing that can be done about it except pray.

Other than that life is proceeding normally.  Lucy will be starting kindergarten in a few weeks.  She has already started reading.  She has also grown three inches since her surgery.  Another huge milestone is that the horrible eczema she had all up and down the back of her right leg (it was her right jaw that was removed) has completely cleared up.  Right now, I don’t have access to my pictures that I wanted to post showing the dramatic difference, but oh well.  I’ll have to do that later.  I guess it was a few  months after her surgery that I noticed it was almost gone and then a few months later it was completely gone.  This is great news as most eczema is caused by allergies and poor digestion.  We knew her digestion would get better once she could chew, but it’s nice to see visible evidence!!

Thank you all for you support and prayers and for being here to listen.  It is so nice to know that I will be able to call on all of you again to pray for Lucy when she has her following surgeries.  I would like to ask that you pray for two other intentions…

Lucy’s godmother’s son has been in and out of the hospital for years.  He recently had a surgery in Cincinnati that they thought would be a corrective surgery and lessen his pain and problems.  Unfortunately, he developed an internal infection near the site of the surgery on his intestines and is currently in Cooks Children’s in Fort Worth.  He had to have yet another surgery to place a drain in on the infected area.  His name is Adam and he had is large intestines removed as a baby because of a rare condition.  This has caused years of pain and problems.  We are very grateful he is alive, if it had not been for these interventions he may not be with us, but please pray that they can come to a crossroads where this condition doesn’t cause so much pain and so many problems.  Please pray for the infection to clear up, his body to heal, and for his perseverance.  He is only 9 years old and this has taken a toll on him.  Also, please pray for peace for the whole family.

The other intention is for the family of one of Lucy’s friends.  She is the oldest of 3 children, her two siblings have Joubert’s syndrome.  Her sister is 3 and blind with no motor skills and her little brother Dominic was born Wednesday 8/15 by c-section because he had hydrocephalus (severe excess fluid around the brain).  He weighed 11 lbs 9 oz.  He is surgery today  to place shunts to relieve the excess pressure.  His prognosis is not known at this time.  Please pray for this family and for Dominic’s continued health/recovery, if it be God’s will.  Praise God he was baptized and confirmed on the day he was born.  At the very least, I pray that this families vigilant witness to life will have an effect on the culture of death that surrounds us, especially in the genetic/hospital communities of which they will have direct contact.

Thank you again!  Here is a family picture minus Jake from our trip to Colorado…One day I’ll get one of the whole family.

 

 

In Christ’s Peace,
Katie