Kathryn's Pages

Hi Everyone,

Thoughts of you, our Caring Ally, press on my heart today as I pray for you. I just wanted to send my love and as always, our thanks for your much-needed prayers and love.

The following was part of an online daily devotion that I’ve come to depend on. Click here to find it.

“No king is saved by the size of his army; no warrior escapes by his great strength. A horse is a vain hope for deliverance; despite all its great strength it cannot save. But the eyes of the Lord are on those who fear him, on those whose hope is in his unfailing love, to deliver them from death and keep them alive in famine.”  Psalm 33

Today, my prayer for you is that God is your refuge and strength! Psalm 46

Kathryn’s function is still better than it was before Ketamine. Her pain has returned and it seemed that we were losing ground fast and doctors were not ready to try more Ketamine. But we are trying a few alternative treatments (more later), and we see some promise of help in them.

We found a good deal on a condo a few miles from Sunset Beach, NC and we are vacationing there now. Joe had interviews so could only be with us for a short time, but Kathryn is able to be here (first vacation travel that she has been able to tolerate in years!!) and we are finding fun things to do despite rainy weather.

LOVE YOU GUYS!!

Kathryn rode a bike yesterday.

I know that doesn’t sound like a big deal… Oh Lord, how to put into words how very much that means to us?

Years ago, probably 1 or 2 years into CRPS, after a treatment that had given Kathryn some relief, I made her ride a bike. We were in Pocahontas Park, she was 11 or 12 years old… she should love to ride a bike -right? She was higher functioning at that point than she has been during much of the last 5 years… all kids love to ride bikes -right? I was going on the advice of clinicians that we should push her through the pain, so I made her ride.

At first she was mad that I should do such a thing, that I would force her into such pain when she already hurt so badly. Then she cried in agony… and the pain didn’t stop when she got off the bike, it never stopped.

Once or twice since then she would sit on a bike and try… for just a bit, with friends who wouldn’t push, they didn’t understand but they didn’t push.

When young children get CRPS they are at a communication disadvantage that can be nightmarish. They often don’t understand that the horrible pain they are experiencing is unusual, that it is not the norm. Children with CRPS may struggle to do what their parents ask and what is expected of them often not realizing that those around them cannot fathom the pain they are up against.

With CRPS, as a form of treatment clinicians often push patients to use their body despite the pain… horrible pain that most of us could not imagine.

Today there was no need to force a bike ride, Kathryn chose to ride and she enjoyed it! She was shaky and tired when she got home… that’s all, just tired. Thank you God for ZERO CRPS pain today!!!! Thank you for clinicians that won’t stop as they fight this monster!!

NOTE: I want to share with you my favorite encouragement and insight -written by our dear friend and pastor, Michael Seifert. Please click HERE

Three weeks PAIN FREE!! Kathryn is doing more each day!!

Uncle James and Kathryn are both feeling so much better and getting their strength back. Time to finally celebrate their birthday together!

For 5 years Kathryn often needed to leave the party early or not go at all. Kathryn was 10 years old when this CRPS monster changed our lives. This week we are enjoying a young lady whose energy is increasing each day. YEA!!! SOOOOOOOO THANKFUL!!!!!!!!

Joe drove Kathryn home from treatment almost 2 weeks ago but this weekend was the first time for them to hang out at his place with her PAIN FREE!!

Joe was Kathryn’s life line during the long and difficult treatment and we all came back tired and wondering what would happen next.

During the last five years, going to Joe’s place was distraction -a place Kathryn could forget about her pain for a bit. She could sometimes push herself to go a little harder there and do a little more -surrounded by very kind and fun (older than her) young people. During bad flare-ups Kathryn couldn’t do much while there but she craved a different venue, and Joe’s place was a God send.

Kathryn is doing very well and getting stronger! She and Joe did some walking downtown today, hung out with friends, went out to eat and rested.

Dave and I rested at home as well (Dave has been working very long hours again this week)

I have found myself very sleepy when I stop -taking rest from thoughts of Kathryn’s pain. This kind of rest has been a long time coming and we are so grateful!!!

LOVE TO ALL!!

Each day without pain is a gift!! Kathryn’s CRPS pain continues to be zero!

Until now I have not been able to grasp words or feelings. Until now I have just put one foot in front of the other. But this morning I walk past her room and she is not on her bed!  She is in school today, still tired and sometimes sore, but no torturing pain!

Now the tears come! Now feelings finally surface! Finally, release! Five years of watching my baby in pain and not being able to help! Dear God you gave me the strength I needed each day! You walked beside me!

Many of you spent much time with Kathryn in the last five years where she made sure that you could not see her pain. I was nearly always aware of it. She was always with it.

Much learning and life was missed and right now that does not worry or sadden us. How can it when I look at her bed and I look at the couch and she is NO LONGER LYING THERE IN PAIN!

Crying joyfully to the Lord   -Rita

   LOOK MOM, A PAIN CHART WITH NO INK!!!!

“Erupt with thanks to the Eternal, for He is good
and His loyal love lasts forever.”  Psalm 107:1 THE VOICE

A SPECIAL PRAYER REQUEST: Please pray for healing for our brother-in-law James (alias Uncle BrmBrm) He has been very sick and in great pain with Pancreatitis. He is in the hospital now and has been hospitalized several times in the last year with this.

Kathryn is now five days free of CRPS pain!

THANK YOU GOD!

Thank you EVERYONE for your prayers and help that come in countless loving ways.

Thank you to THE MANY WHOSE NAMES WE DON’T KNOW who have been praying and helping for so long.

Thank you CLINICIANS WHO DARE TO DO MORE.

Kathryn is very tired but excited and happy. She was DETERMINED to go back to school this week but when she did, the overpowering fatigue that was forecasted became inescapable.

She went to school 2 half days and everyone was so welcoming- she loved seeing everyone again!! But she hit a wall of fatigue and was forced to “cry uncle.”

During the last five years, especially in the first two years, Kathryn’s CRPS pain was temporarily lowered to a 2 or 3 on the pain scale for short periods of time when treatments were effective. This is the first that her CRPS pain is at zero in the last five years!

As expected, she has muscle aches and soreness from using muscles that have not been used for a while. Interestingly it seems that Kathryn can again recognize the difference between CRPS pain and muscle/joint pain more distinctly.

“Are any in your community suffering? They should pray. Are any celebrating? They should sing praises to God. Are any sick? They should call the elders of your church and ask them to pray.”      James 5:13-14 THE VOICE

This is the first night in a very long time that Kathryn has fallen asleep PAIN FREE!
Tired but NO PAIN!

Leaving the hospital this afternoon

I don’t have the skill or energy to put our emotions into words.
Our thanksgiving is humble and tearful.

This is Kathryn’s Dad, Dave. We are post 16th birthday and counting.

Kathryn is doing fine this afternoon, although she’s quite “loopy” her pain is often at a 3! To her a 3 feels like a zero would feel to us who don’t have constant chronic pain. To get that 3 lower and to attempt to get the pain to stay down, she must go through two more days of treatment that will be tough.

I re-arrived at Kathryn’s ICU room in NC last night from Richmond at around 11:15 pm and I don’t think I’ve ever seen an ICU room decorated so well! Balloons, cake and cupcakes, presents, cards – they had quite the bash for Kathryn’s 16th!

I listened to Dr. Bill Ury audios for at least 2 hours on the road, and that made the drive fast and enjoyable.

On Ketamine the patient loses short term memory so Kathryn declares and repeats every 10 minutes with tears of joy that “I can go back to school now!” It is on her “MOST WANTED” list!!

I want to send out a sincere and heartfelt thanks to those who are involving themselves with us on this latest journey. Won’t mention names (cause you know who you are anyways), but thank you so much for all the prayers, generous support, help, cat and house sitting, gifts and time you have given to Kathryn.

Bye for now -Dad

  Despite the Ketamine induced memory loss, Kathryn can still remember that her 16th birthday is tomorrow.  

Uncle Johnny and Aunt Janina are coming to NC today to help us celebrate. We moved into a room at Winston-Salem Ronald McDonald house yesterday and they will be staying there with us- Yay!!

At only 27 hours into treatment now Kathryn’s pain is beginning to lower. She is on a very low dose and side effects are being controlled easily with less meds than expected. Soooo thankful!