Luke’s Story

Site created on February 24, 2021

Welcome to Lukes site, we are using it to keep everyone updated about his health.  Luke was born with lipomyelonemeningocele https://www.columbiaspine.org/condition/lipomyelomeningocele/ a tethered spinal cord.  His first surgery at ten days at Childrens Mercy Hospital released his spinal cord and replaced it in his spine.  Now his spinal cord is re tethered and he needs surgery again to release the cord.  He will be having that surgery March 16th.  He is currently having testing.  I will do my best to update this site as I can.  Thank you for your thoughts and prayers.   Caringbridge may ask you for donations to support the site, we appreciate the site but these requests are not from us.

Newest Update

Journal entry by Nichole Smith

So lot to update.

Luke is doing well.  Lots of Physical therapy and just regular activity.  Going to the pool most days.  He is getting stronger every week. 

He had developed a lot of tightness in his lower extremities ankles and knees.  All part of his spinal issues.  With stretching, PT, and leg immobilizers over the last few months, He has increased flexibility by 10 degrees in his ankles and knees!  So much hard work.

He will continue PT for several more months to keep working on strength and flexibility will be something he works on always.  The great news is additional intervention and surgery won’t be needed to address the flexibility.

Luke will need a brace on his right leg.  It’s low profile and flexible.  Luke described it as feeling on his foot like a key going into a lock.  It helps his foot go into the groove according to him.  He also needs foot-stabilizing inserts.  They are like little molds that go around his foot and ankles that fit in his shoes.  These are all fitted to him and will need to be replaced every time he grows.  

The exciting news is the neurosurgeon cleared Luke for all activity this week!  He has 18 more months for full nerve healing and has regained some feeling on the bottoms of his feet which is painful with increased activity. We are waiting another year for that to hopefully fully settle.

So bike riding will be happening soon and diving lessons in two weeks.

I haven’t written in a long while because days after the last entry Luke’s dad Loren announced he was leaving.

Life over the last few months has been challenging to say the least.  Our house was in the midst of selling and we(well I was)  actively looking for something on one level so Luke could be in the best situation. 

Luke has had more to deal with in the last six months than anyone ever should have too.  

Luke and I are currently living with my Mom all on one level.  So his need there is being met. So grateful for my Mom and all she has done for Luke and me during this time.  Seriously grateful for this refuge and safe place for my son to heal.

Pictures of Luke’s fun summer below.

Patients and caregivers love hearing from you; add a comment to show your support.
Help Luke Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Luke's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top