Update June 11th

We wanted to take a moment to give everyone an update on Kayla’s progress so far.  We brought Kayla back with us to the Ronald McDonald house Friday night.  It is very exciting and she is so happy to get through the in-patient portion of her stay which lasted a total of twenty days.  After a weekend with us she started out-patient on Monday.  We drop her off at 8am every morning and pick her up at 4:30 to spend the evenings with us.  Usually this portion lasts only a week but as with the in-patient portion she will have her time extended at least one maybe two weeks per the medical director. While this is hard to hear that we are going to be here up to 6 weeks, we are thankful that she is getting treatment that she needs and that it’s improving her functionality.   

 

As for Kayla’s physical update, her mobility is slightly increasing each day, she is currently using a walking stick with the walker being used for great distances.  This change in mobility control is causing new parts of her body to hurt but she is fighting on.  The rest of her body is still in considerable pain with the vast increase in muscle usage since last Thursday when she gave up the wheelchair completely.

 

The main concern now for us as parents has been her pain management.  That is the one area we feel that this program is really lacking in and of course is the biggest issue that she is dealing with on a day-to-day basis.  She said today that she can not believe how her pain tolerance is growing.  Unfortunately not in a good way, she says she continues to be amazed at how her pain increases each day and she still pushes on.  This is killing us as parents to watch her go through this hard time in her life and all we can do is pray and try to get her the best treatment she can.   

We have been introduced to a Neurologist in San Diego who deals with CRPS in children and is considered an expert in the field of newest pain management.  The treatment is cutting edge and is in the early stages. This treatment is only used under Dr. Sabjen’s guidance as she follows the research in the newest nerve pain management.  The doctor has a two-week maintenance cycle that has produced positive results in CRPS nerve pain. One of Kayla’s new best friends who “graduated” from Cleveland Clinic program is leaving for CA to be seen this week to be seen by this doctor.  This girl has come a long way with her mobility but is in constant pain just like Kayla.  We are praying for results and answers to curb the pain.  We just know we have to push on until she is finds some relief, whether it is Ohio, California or where ever, we just want our girl to have pain management of some degree.

 

Kayla is still suffering from short -term memory loss and can’t concentrate for long periods of time.  We are grateful for this place along with others who are working diligently to create relief for such a misunderstood diagnosis.

 

We are sure of God’s blessings in every piece of this process. We ask for prayers in line with God’s will for all of us, discernment in our decisions for Kayla’s care and the miracle of being pain free.  Kayla has learned a lot about what she is capable of when her faith is aligned. Thank you all for loving us and supporting our family through this struggle.  God Bless! 

May 25th

• Today was Kayla’s 1st day pass given from the hospital.  She was allowed to go out with us for up to 8 hours and “breath” for a bit.  It has been nice to have our family together again, and the sound of the 3 of them talking in the back of the car.  Kayla has had to walk for 5-8 minutes every hour with the assistance of the walker.  Except for these times she is still in the dreaded chair.

  The last couple days have been hard on her, she has been experiencing dizzy spells and blurred vision.  We think this is due to some of her meds that were upped and have readjusted with the help of the hospital.  See a little improvement today, hoping that will be gone in the next day or two.  The increased pain has not changed and still an ever present part of her life.

  We had a informal sit down with Kayla’s Dr yesterday and he thought that she will have to be in the inpatient program a week longer then originally expected.  This will be reevaluated again after next week.  From what he said she is a worse off then he originally thought and unfortunately every child is different in the program.

  She has therapy tomorrow morning then we get to take her our for a couple of hours for the holiday.  Wishing everyone a happy holiday weekend!

  The Smith’s

May 17, 2013

Another difficult day for Kayla today.  She is experiencing pain all the way up her arm into her left shoulder.  She is staying as positive as she can as she battles the pain.  We took her to the museum of natural history today as a distraction.  It worked for about an hour.  Kayla also battled an hour of physical therapy in the pool at the local ymca with Aaron.  She is strong and courageous, we have a true fighter! Can’t wait until Monday!!!!

Kayla

This is what Kayla hopes to get back to very soon!

May 16, 2013

The countdown has begun! Kayla will begin the Cleveland Clinic Rehabilitation Rehab Clinic on Monday, May 20th.  She is really looking forward to getting started.  The pain has spread to her entire left hand in the last day but she is staying positive that she will have full use of her legs and hand shortly.