Keeping up with the Williams Family

The past couple of weeks have been extremely difficult in our family.  There have been many people who have shown us their love and support and who have taken the time to love on Payton specifically but I want to take a minute to tell you all about something that happened to us yesterday.  You know, in life we cross paths with many different people.  Being in the ministry over the years, we have had the privilege of serving God with several churches and literally thousands of different people.  There are always those few that stand out as extraordinary people and lasting friendships.  Typically in each church, there are one-maybe two families that we stay close to and continue to keep in touch with and see from time to time.  However, in 1997 when we moved to Batesville, Arkansas we never dreamed that we would become so close with an entire church who would continue to love us and take care of us long after we served together with them in ministry.  Batesville First Church of the Nazarene is a church full of people who CARE.  During our years there, they took such good care of us and loved on us like crazy.  They were always giving us gifts.  From recognizing all of our birthdays and our anniversary, each year and every holiday this church was so giving and spoiled us like crazy.  The people in this church have a real gift for looking beyond themselves and recognizing when someone else is in need and then taking the extra step to help meet that need.  It was hard to leave Batesville when God called us to a new direction in ministry in Texas .  We literally felt like we were leaving family behind – not just a church with a few close friends – but an entire congregation full of moms, dads, grandparents, aunts, uncles, sisters, and brothers.  Even though we are no longer their “responsibility”, this past year this church has continued to love on us and support us as we have gone through everything this year has held for us.  We have so appreciated the prayers, cards, messages, and phone calls to encourage us this past year.  Then, this week once again we were touched by this group of people in a way that a mere “thank you” cannot even cover.  We received a monetary gift in the mail that was so sacrificial that everyone must have had to sacrifice and dig deep to give.  We are so blessed, honored, and touched by this gift.  There is no way to appropriately thank this group of people for their love and sacrificial giving.  Once again, you have allowed yourselves to be used by God to bless us and help us during a time when we needed it most.  We love you all dearly and miss you so much.  Thank you for thinking of us and for sacrificing to make things better in our corner of the world.

Today began the hard work of physical therapy for Payton.  We did our usual walking the halls and talking about everything under the sun.  At least we are on a different floor this time so the view is not the same.  The therapist had her walking up a step and back down several times.  When she returned from an hour of therapy she was not in pain.  Her face was flushed and her leg was mottled colors which shows that she would have been in pain without the epidural but she was feeling nothing.  Her doctor is so awesome - once again he got the location of the epidural exactly perfect and her right leg has full feeling and function and her left leg is now only numb from the knee to the ankle.  That is a miracle to zero in that close!  Last night she slept well.  She was doing that really slow and deep breathing that people do when they are deep in sleep and resting comfortably.  That was wonderful for this mama to see.  She had a busy day today with nurses and people who remembered her from being there in October coming to see her.  She made such an impact on so many people during those 23 days we were there in October that these people remember her and wanted to see her again and wish her well. 

Today she went to a Christmas party for the patients and won a GIANT stuffed puppy.  No joke - lying in the bed next to her it is almost as big as she is!  That really lifted her spirits.  When Dr. FG came in this afternoon he said if she keeps up her progress we will be on target to go home on Monday afternoon.  So, continue to pray that she keeps progressing as the level of the epidural is turned down she will continue to be pain free.  The scariest part is when they start really turning down the levels.  It has been turned down some since it was put in but that was just to decrease her level of numbness from the waist down to just her leg.  Dr. FG’s assistant told me this morning that they really did not think this epidural would work this well so quickly.  The severity of her pain and the way the leg looked on Monday when they saw her really made them concerned that this would be another long battle.  Thank God that she has responded so well and quickly! 

So, that is the news for today.  We appreciate your prayers and comments on the blog.  Thanks for the support you all have given to us during this difficult time.

The procedure to put the epidural in went fine and Payton was settled into her room by late afternoon.  The night was fairly restful for her sleeping off the anesthesia and resting without pain.  She was totally numb from the waist down which causes a few problems so this morning at 6 am the doc turned her epidural down some.  By Lunch time she was able to walk with crutches a small distance to the nurses station.  Tomorrow she will get another wax treatment like lat time so we will get another “Wilson” only he will be green.  Ha Ha  Tomorrow will also begin intense physical therapy twice a day so please pray for her.  It is very hard work. 

The epidural is keeping her leg pain free just like last time so hopefully those nerves will reset themselves again and she will go home without pain.  The doc is hoping to send her home on Monday but in case she has to stay they have told us that Christmas Day around here is quite the event.  There will be famous people here but they cannot tell us who but they said last week the Dallas Cowboys and Mavericks were here so I guess it won’t be them! 

Thanks for all of your prayers for Payton (and her parents).  We will update more tomorrow.

Payton checks in at the hospital at 10am and her procedure will be under general anesthesia sometime after 11am.  She is what is called an “add on” at the hospital which is kind of like flying stand by.  Her doctor reported to the OR scheduler that he was available from 11am to 3pm to do procedures so Payton has to be there one hour before the earliest time in case a room is open then.  Basically we wait until a room is open so we could be waiting until 3pm before she goes back.  That will be difficult.  Payton does not know that because she is so worried about being hungry I figured she would totally panic if she knew she might have to wait until 3pm.  We will deal with that as it comes!

We will update tonight and let you all know when she is safe and settled in her room.  Please pray that everything will go well.  There are so many variables that make this first 24 hours difficult and Payton is worried about all of it.  After this procedure those first several hours can be pretty miserable and she is not looking forward to that part of it.  I feel so bad for her…poor baby…

Maybe the word “tragedy” is too strong of a word but right now it doesn’t feel strong enough.  Payton has endured an extreme injustice and is paying dearly right now.  A friend of hers got upset with her and in an act of anger she stomped on Payton’s bad leg right in the place where the RSD has been.  Within hours her pain was returning in full force and within a week she was even vomiting from the severe pain.  We saw our doctor (Dr. FG) today and he thinks the only way to get her back to having no pain is to “re-do” the epidural.  At this point with only a little over a week into her return of pain he believes it will only take about 14 days.  She is supposed to go into the hospital tomorrow (Wednesday) providing our insurance company approves an epidural this soon after the last one.  She will be in the hospital until Christmas Eve and then hopefully will get to come home for Christmas.  Dr. FG said he would do his best to get her home for Christmas even if she has to go back to the hospital the next day.  The catch is if the insurance wants to wait a few weeks that gives her more time to be in severe pain and more time for the RSD to settle back in which will mean a longer epidural when she finally gets it.  So, we are praying that insurance asks no questions and just approves the procedure. 

We are asking that you all please please pray for us.  I don’t think we as a family have ever been this down in all of our lives.  We were just getting our lives back and moving on from the terrible year and things were good.  It really makes you realize how one moment of poor judgement can ruin a lot for a multitude of people.  Please feel free to come and visit us at Children’s Medical Center of Dallas.  Since Tim is working nights at UPS now I will be the only one at the hospital with Payton.  No trading off and letting me get home and rest - just one more reason why this whole thing just makes us all so hurt and angry.  My body just can’t take that kind of abuse but there is no choice in the matter this time.  I know it hurts Tim as well because he wants to be working nights about as much as he wants to be submerged in boiling water.  I know he would rather be helping out at the hospital. 

Please pray for our spirits and that Payton will have a pain free Christmas.  Pray also that this epidural will work efficiently and quickly without any complications.  This will be her 7th time to be put under general anesthesia in 7 months! And of course pray for the strength and stamina of Tim and I since this time will be very difficult with his other job.  Please pray for Payton’s emotional health as well.  She is extremely hurt right now and feels betrayed.  I think that aspect of it makes it even more difficult to handle the physical because her emotions are all over the place.  We will keep you updated as things develop.

Well, we are still all at home and doing very well.  It has been so nice to be back home all together as a family.  We missed each other so much!  Payton has been feeling great.  She went to the church district girls retreat and spent the night with the youth pastor’s wife and all the teen girls from our church.  She kept calling me (Pam) just to say how much fun she was having and how good it was to be there!  Everytime the phone would ring my heart would jump but she was just so overwhelmed with the fact that she was there and felt good.

She has been on her bike a couple of times but mostly she has been roller blading and jumping on the trampoline!  She has also jogged twice just a very short distance about 6 houses up and back!!!!  That is so amazing - I cried the first time I stood at the door and watched her run.  She has been so active that she has had sore muscles in other parts of her body just because she has been so inactive for so long.  It is so nice to have her back active in the family activities and feeling good.  We went to Zane’s Karate tournament as a family and it was so much fun because not only was Payton there with us but she felt good and enjoyed herself, too.  Payton will be the first to give God all the glory and to say that He has given her this remission.  We are thankful that God has made her feel better and given new life to her and new meaning to her life.  We are trusting for a lifelong remission in symptoms but if not…we know that God is the great physician and that He will provide just like he always has for our family.

Take some time out today to hug your kids, hug your family members and spend some time together.  It goes by too fast to take anything for granted!

It is so wonderful to be at home!  We have been catching up on sleep and chores around the house that have gone undone for a long time.  We had a fun evening together last night for halloween.  Payton and I passed out candy and Tim and Zane went begging for candy.  Then, Payton walked about a block with the boys to get some candy of her own!  I had to go pick them up because she couldn’t go any further but what a great thing that she made it as far as she did.  She had some pain last night and had to take medication but today she did fine.  This evening she rode her bike up the street and back and jumped slowly and gingerly on the trampoline!  She is so enjoying doing things that she has not been able to do in over a year and we are having a great time watching her!   Zane is also enjoying having her back as well - he has missed playing with her outside.

Continue to remember her in prayer as this process seems to be a little forward and back but she is still just an amazingly stong young lady and even if she is having a little pain she is pushing through so she can continue to heal those confused nerves. 

Well, we made it!  We got home before noon today.  We all collapsed and slept for about 3 hours and then we went out to eat at El Chico for dinner.  Payton had been craving mexican food for her entire hospital stay so we went and had a celebration.  It was so much fun to laugh and be together as a family again.  The best part is that although we are all exhausted - we all felt good.  Payton is on activity as tolerated.  She is free of crutches except right now she is using one crutch on our stairs until she builds up the strength in her legs more.  The doctor told us that she will be in physical therapy for the next year.  She will start out at twice a week for about 24 weeks and then move to once a week.  We have found a therapist who has helped another patient of Dr. FG’s and it is really close to our house so we are hopeful that it will workout for Payton as well.  At this point she can take ibuprofen for any leg pain and it is cutting it completely.  That is absolutely such a miracle!  To see her actually walking normally without a limp, without crutches and with a SMILE on her face is enough to make this momma cry!  Her courage is so amazing!  Anyone who has talked to Payton the last couple of days has mentioned how her personality is back and that is so true.  It feels like we got our baby girl back and I forever give God all the glory for that!

Please continue to pray for us as we transition into what life is like for us now.
1.  Pray that we will get an awesome physical therapist.
2.  Pray that we will make a good connection with a psychotherapist who can really help Payton deal with any pain that she may continue to have.
3.  Pray that Payton will not have anymore pain.  Even though RSD is considered chronic and is something that she will supposedly have to deal with in the future, pray that for her it is over and that she will never have pain like that ever again.

Keep checking back in with our blog.  We will continue to keep you all updated on Payton’s progress this way.  Thank you so much for all of your thoughts and prayers on our behalf.

Last night Payton told her doctor that this was probably the hardest thing she would ever have to go through in her life.  He told her that she quite possibly could be right and that she handled herself with such grace.  Then Payton said “well, since I have been through the worst there is nothing that life can hand me that I can’t handle.  If I made it through this then I can make it through anything.”  That is the mind of a survivor and my hero!

Yes - it’s true - after 22 days we are finally all going to be back home together!  Over the weekend Payton began to have severe back pain to the point of needing morphine to control it.  It turns out that the epidural catheter had worked its way out of the epidural space which is within the spinal colum and was lodged in her back muscles.  This morning they removed the catheter and said that she had not been getting the benefits of the medication since Saturday.  The good news through all of that is that she was having only very minimal leg pain!  Since removal of the catheter early this morning she has done great. She worked hard in physical therapy and even played a short round of soccer!  This evening when the Dr. FG came in he said she can go home in the morning!  YYYYYYYYYYYYYYYYAAAAAAAAAAAAAAAAAAAAYYYYYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (that is from Payton)

She is going home with continued physical therapy for about a year, some oral medications, and activity as tolerated.  The doctor explained that this is not a cure for RSD and there is always a chance of flare ups in the pain but now we have it under control and we know what works for the really bad pain.  So, our WAR (williams against rsd) continues but we have won this battle!!  This is an answer to prayer and we have been thanking God every step of the way. 

So, we will continue to update this blog.  Over the next week we are calling it “re-entry” as we work to get settled back into life and establish a “new normal” for Payton.  Of course stress, health and fatigue are things that can cause RSD to show its ugliness so we will also be working on tools to help her manage those things and to get her stamina back as she regains her strength.  Please pray as we get in with a new physical therapy group and a pain management therapist who will be teaching self-hypnosis among other things to help Payton deal with her illness.  It is always nerve wracking breaking in new doctors!!  Ha Ha

Hi everyone!  It has been a few days since we updated our blog but that is because we have been up and around and busy with physical therapy.  Today, however, is a lazy Saturday and Payton and I (Pam) are hanging out at the hospital together.  We ordered a late breakfast, took a nap and went to the game room.  We also spent a few minutes chasing down a juvenile delinquent!  You see, we spent a lot of time decorating the door to Payton’s room.  We painted these really cool window stickers that are made to stick on her hospital room door.  They are really cute.  So, there is a group of 3 brothers whose baby sister is a patient on our floor and the brothers are left to roam free all day.  Today they decided to destroy the stickers from our door.  A few days ago they took 2 of them and I talked to the mom but today they were at it again so Payton and I “took the law into our own hands”!!  Ha Ha

Payton is doing great - still on target for next week being our LAST!!  It may be Friday before she goes home but we are hoping that is the latest.  The epidural will be turned off on Tuesday or Wednesday.  Today the epidural was changed so that one of the medications was stopped and the other medication was actually turned up.  The purpose for this is to see if this second medication is helping her pain because if it is……it can be taken orally and has no side effects and would be something she could take at home.  That would be wonderful!

Zane is home from Oklahoma now.  He got home Friday night and it really was so good to see him!  We are officially on the home stretch now…

Ways to pray today:
1.  That Payton does not have to stay any longer than Friday this week.
2.  Payton has developed a bad head cold and feels pretty rotten.  Please pray that this will be gone quickly!
3.  Pray for continued strength for Tim and Pam as they trade off time at the hospital and time home with Zane.