Day 2

We had a really rough night last night!  We knew it was going to be hard but last night was one of the hardest things to witness!  The nurse couldn't really control his pain and after many calls to the doctor and dealing with "Momma Bear", she was able to give some relief.  As soon as he fell asleep, they were in to take blood, etc.  Everyone says the hospital is not a place for sleep.....I totally agree.  Today, through a lot of tears, he was able to transfer to a wheelchair and go around the hospital for a bit. 

 

 

The following picture is John Thomas in the playroom.....a little less than thrilled and you can tell by his precious face, he's hurting. 

John Thomas:  "Why do I have to have this fixator and be in the hospital?  Why do I have to hurt?"

Parents:  "We don't know the answers to those questions and in fact; we're wondering the same thing ourselves.  But have you heard the word FAITH?"

John Thomas:  "yes"

Parents:  "Do you know what that means?"

John Thomas:  "kinda"

Parents:  "It means believing and hoping with all of your heart that Jesus is going to take care of us...no matter how bad it looks right now.  We have to believe that and take it day by day."

John Thomas:  "OK"  (tears running down his face)

 

Oh how our hearts hurt right now. Please, dear Jesus, take away this pain and heal our boy!

 

 

John Thomas misses his sister very much...we all do.  He was able to FaceTime with her but was really too weak to carry on much of a conversation.  He also misses his puppy, Paisley. He loved his picture from her.

 

 

Dr. Paley thinks we may be released tomorrow....just depends on how well he can get around.   We'll go back to Quantum House after he's released and start the dreaded physical therapy. Thank you for your prayers.....they're carrying us through this dark time. 

#GodIsFaithful  #EyeOfTheTiger

 



We're praying for an amazing 2016,
Brad and Janay

What a day!

It is sunny and a very humid 88 degrees here in West Palm Beach.  I think it was 34 degrees when we left home on Monday.  We love the palm trees!

John Thomas was in a lot of pain after surgery.  It was so heartbreaking to watch!  Praise the Lord for Nurse Ellen.  As soon as John Thomas was admitted into her care, she has been able to keep his pain managed.  We are so grateful! 

Here's the first glimpse of the fixator.   Since the caps are orange, John Thomas said it's for the Longhorns.    Oh how this smile melts our hearts!

John Thomas loves Rocky!  He has seen all of the movies and even recently watched the latest one, Creed.  You can imagine his delight when Brad found Rocky III on the TV....I think they're going to have all of the Rocky movies on this channel tonight.  High Five, Jesus!

We have a long road ahead of us!  Dr. Feldman said that the hip did collapse and hopefully this fixator with 6 pins will do its job.  John Thomas will wear this for 4 months....we've actually already scheduled the removal for May 5th.  There is a chance that another surgery will be needed.  Brad and I are praying along with you, our prayer warriors, that this will heal our Mr. Man and no more surgeries will be needed.  Please keep us in your thoughts and prayers as we begin physical therapy and pin cleaning tomorrow:   trying to get used to our "new normal".   Through your generosity, love, and prayers, we believe with all of our hearts that John Thomas is on his way to BIG steps! 
#GodIsFaithful

All our love,
Janay and Brad

 

 

 

 

 

 

 

 

 

Almost time.....

Almost time....so glad he was given some "happy juice".  He was getting so nervous.  Praying for a successful surgery and recovery.

#GodIsFaithful

We're here!

Quantum House will be our home away from home for the next 2 weeks.  It houses up to 10 families whose children are being treated at St. Mary's.  We have our own private bedroom and bathroom but share a kitchen, dining room, and playroom.  John Thomas is already excited about meeting new friends and playing golf on Wednesdays!  The staff has been so wonderful in welcoming us.  Special thanks to our angel, Jennifer Scott, for making the arrangements for us to stay here.  It's very rare that there is an opening.


Today was a day for pre op tests.  Even though we really didn't have to wait that long at these appointments, it was hard because we know what's ahead of us. What has seemed like an eternity of waiting is now here....tomorrow is the big day.   It was reassuring for us to see this map.  People from all over the world come here for treatment.  Why?  Because this is the best place to be for perthes and limb lengthening.

Dr. Paley is on vacation, so Dr. Feldman will be doing the surgery tomorrow.  It is scheduled for 8:30 a.m. (Eastern Time) and our arrival to the hospital is 6:00 a.m.  The stay in the hospital can be 1 to 3 days....depending on his recovery.  It' still hard to imagine the pain that Mr. Man will need to go through for the next 4 months.  Praying that we are able to take one day at a time.....sometimes even hour by hour.  Thank you for your sweet comments on FB, texts, messages, and verses of scripture that we're clinging to.  This has been my favorite one today:

Be strong and courageous.  Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go.  Joshua 1:9

Hug your kids super tight tonight....we're sure missing Jules but know that she's taken care of.  Thanks  Neecy, Cinny, Jeanne, Sara, and June for welcoming her into your homes.  Thanks to my sweet Daddy and Lollie for taking care of our furry little girl, Paisley.  Until tomorrow....


Love,
Janay and Brad
#GodIsFaithful

Our cup overfloweth!

 

Wow!  We are speechless!  Thank you for your generosity and kindness!  Special thanks to our cousin, Laurie, for setting up the account.  We really have no words that describe our gratitude.  Thank you to Co Co, my 5th grade teammates, and EIS staff for your generous gift.Thanks to the Coppell Administrative team for your gifts, as well.  We will be able to get John Thomas everything he needs for his recovery thanks to amazing people that we've met along the way.

 Thanks to my Bonham girls.....forever steadfast and faithful friends.

Since I was a kid,  I have been a Texas Longhorn fan.  Adam Bonnette has made us Aggie supporters for life.  Adam emailed his Aggie network the Go Fund Me link and there was an overwhelming amount of support from people that we've never met within two days.   I've always heard about the "Aggie family", and because of Adam, we got to experience it first-hand.  Perhaps it's time for us to trade in our burnt orange for some maroon shirts.  Adam- thank you for reaching out to us.  We are forever grateful!  #gigem #GodIsFaithful

All our love,
Janay and Brad

Another surgery is needed

After many hours of waiting, Dr. Paley told John Thomas and Brad that he would need another surgery.  It seems that the bone is growing away from the socket.   The surgery 10 months ago did exactly what it was supposed to do.  The bone grew without any collapse- and that has been our steadfast prayer.   Here is the x-ray.

The surgery's official name is a hip distraction with an external fixator.  We have scheduled the surgery for Dec. 30th.  This is going to be a very painful process for our Mr. Man.  He will wear this for 4 months and be on crutches.  He will spend several nights in the hospital and will need to stay in Florida for a minimum of 2 weeks.  Here is an x-ray of an external fixator.

 

 

Here is an example of what it could look like on John Thomas.....an "external view".  Brace yourself...

 

We are still in shock and trying to "process" all of this information.   John Thomas was very upset as expected when he was told the news of another surgery and getting "that thing" put on his leg.  Jules has been the steadfast big sister!  She says that she will take good care of her little brother...and knows that it's going to be a tough job!

 

Here's what we know- we serve an awesome God!  We believe that he will heal John Thomas in these next 4 months and after this, will be well again.    We have the most amazing family and friends.  Your texts, emails, hugs, FB posts, are so appreciated and uplifting.  There is absolutely no way that we could get through this without your support.  We are grateful for your continued prayers and love for our family.  God's got big things in store for Mr. John Thomas....and with His mercy and grace, beyond a shadow of a doubt, we will witness big steps for John Thomas in His time.

#GodIsFaithful

 

All our love,

Brad and Janay

 

 



Going on 4 hours of waiting for the doc......

He is being such a trooper....and so is his daddy!  Going on 4+ hours of waiting to see the doc....Dr. Paley is a popular guy!  Hang in there, buddy!

A sweet message

Thank you, Mrs. Wszolek and 1B for making John Thomas' morning!

And they're off!

Brad took this picture at Love Field this morning.....watch out Florida- Mr. Man is on his way!

We have good news and bad news!

We have August 10th circled on the calendar in anticipation of getting the brace off.  We have crossed off the days and had many conversations about this trip.....but we're not going to be making that trip to Florida after all.  Dr. Paley was very gracious in allowing us to send an x-ray.  The parents' intuition kicked in...John Thomas had mentioned a couple of times that his leg was hurting.  The red flags went up and panic set in.  We scheduled an x-ray for Friday and emailed it to Dr. Paley.  Had the hip collapsed? Would we go back to square one?  We just knew we would have to wait for the answer, because it was a Friday.  What doctor emails you back before a weekend?  Dr. Paley did.  The good news is that the hip hasn't collapsed...a stroke of God's mercy and grace.  As you can see in this x-ray, his right hip still needs to grow.

The bad news is that the brace will  not be coming off on August 10th.  John Thomas will be in a brace for 6-9 more months.  You can't imagine how hard it was telling a 6 year old boy that he will need to stay in the brace longer.  He will be starting first grade in a brace and sports will have to wait.  He took it much better that we ever imagined.  The Fall and Winter should be a little easier in that it's not hot outside (hopefully), and we won't have to hear about not being able to go to any water parks. We will have another x-ray in September. Our prayer is that as we continue doing those dreaded stretches, the hip will rebuild at a miraculous rate.....no collapse. 
Thank you for your prayers for John Thomas and our family.  Thank you for loving him and Juliana in such a way that gives us strength to finish strong.  The finish line is in sight......just a little bit longer on our journey towards big steps for John Thomas.
#GodisFaithful

Dr. Paley's report

After a long morning, Dr. Paley said that the x-ray looks great!  There is no sign of collapse at this time.

What’s next?  We have to do the stretches 4 times a day…..which he hates.  It may be later than  August before he is able to walk without the brace.   (He doesn’t know this though.)  He will be able to swim this summer but no water parks, diving boards, etc.

Thank you for your continued prayers!  #GodIsFaithful

 

 

 

X-rays

We're anxiously awaiting the news from Dr. Paley regarding John Thomas' xray.  Praying for no collapse of the hip.

Our Angel

Crazy boy

Florida, here we come! (again)

Brad and John Thomas will fly to West Palm Beach, Florida on Sunday.  I can't believe it's been 3 months since the surgery.  Dr. Paley will meet with them on Monday and go over the x-rays.  We're praying for no collapse of the hip and that everything is coming along.  We're also  praying that he'll  be able to lessen John Thomas' time in the brace for the Summer.  It has been hard missing out on birthday parties and playing sports...can't wait for him to be completely healed.  He has been such a trooper through it all!    Thank you for your thoughts and prayers!  #GodIsFaithful

Life as "normal"

Thank you for your continued prayers for John Thomas!  We are trying to continue as "normal" as possible.  While John Thomas does great at school, the nights are very hard.  He's very frustrated and angry about wearing the brace 24/7.  He doesn't get a good's night sleep, since he has to sleep in it, and that just makes things even harder for him.  We so appreciate Mrs. Wszolek and everything she does at school to help him be successful.  Please pray for strength, patience, and that the brace is working.  We will not know until future x-rays if the hip hasn't collapsed.  Prayers that it will stay strong and the bone building protein injected during surgery will be successful. Thanks again for your love and prayers. 

First Day Back

John Thomas was anxious yet so excited to go to school today.  His teacher, Mrs. Wszolek, and his classmates have been so sweet sending him messages throughout the week.  It's hard to imagine that this time last week we were waiting to see Dr. Paley.   We will see him again in 3 months, and I'll continue updating the blog then.  Thank you for your continued prayers and support.  #GodisFaithful

We're home!

Juliana decorated the house for John Thomas' home coming.  She is such a great big sister!  He loved it!  It feels good to be home....there's no place like it!  #GodisFaithful

Room Service

Tonight we stayed in and ordered room service!  This has been our hardest day.  He was very excited to eat in the bed all nice and comfy.  #GodisFaithful

Paradise

Today has been a tough day!  Physical therapy was rough and John Thomas is super sore.  We went and sat at Blowing Rocks at Jupiter Beach for some peace and tranquility.  Once again we're amazed at God's beautiful creation!  We can't wait to get home tomorrow night! #GodisFaithful

K1 Friends and Mrs. Wszolek

Mrs. Wszolek and the rest of our K1 friends sent a video to John Thomas the day of his surgery.  He watches it over and over.  He says that he wants to save this video forever!  Thank you, Mrs. Wszolek, for sending it to him!  Thank you K1 friends for making him feel so loved!

Surgery yesterday.....walking today!

As soon as the brace was on, John Thomas was walking!  We are in awe of the miracle that has taken place right before our eyes!  Thank you, Jesus!  More physical therapy the next couple of days and then back to Coppell we go!  

Aunt Lernie!

We are so glad that Aunt Lernie drove up from Orlando to be with us.  Today we took a break to enjoy this beautiful weather in West Palm Beach.

Physical Therapy and Brace

Today was a busy day!  John Thomas had Physical Therapy this morning and then he was fitted for his brace this afternoon.  He did great!  I am still so humbled and in awe of the Paley Institute.  Families from around the world come to see Dr. Paley and his team.  Some of the families sell everything they have to get here.  It really is a miracle that we are able to be here!  We are so grateful!

Good night for now.....

We are back at the hotel ready for a long winter's nap.  What a whirlwind the past 24 hours have been....but so worth it!  We will start physical therapy  tomorrow, and John Thomas will get his brace.  He will wear it 24/7  for 6 months.  While he's wearing it, he can walk...no wheelchair!  Still no jumping or running, but he will be able to swim and ride his bike.  Thank you for your prayers!  We can definitely feel them.  We know that our boy has been touched by the Master's hand. :)

Praise God from whom all blessings flow!

Dr. Paley did the "core decompression" procedure this morning.  This consisted of him drilling a hole into John Thomas' hip.  He then injected the bone with "bone building" protein.  This will speed up the bone building process and hopefully keep the head of the hip from collapsing.  He injected two muscles with Botox.....this should help greatly with the pain John Thomas has been in.  We are so grateful to have our boy back!

We met our angel, Jennifer Scott!

  We met our angel, Jennifer Scott, yesterday.  We will be forever grateful to her!  Because of her reaching out to us, we were able to come to Florida.  What a blessing she is to the Paley Foundation!  Oh, how we miss her at FUMC-Coppell; however, her ministry continues here with Dr. Paley's patients.

We finally got to meet Dr. Paley!

Dr, Paley and John Thomas yesterday after the consultation.  He truly is a miracle worker!  My favorite quote from him is, "I don't do wheelchairs.  John Thomas will be in a brace and walk out of this hospital."  Truly humbled and grateful.

It's almost time for take off!

Today has been filled with lots of emotions!  Our wonderful Pastor Tom prayed over John Thomas during church. We are so grateful for FUMC-Coppell.  We had visitors and more gifts!   Our cups runneth over as showers of blessings continue to fall upon us.  We will leave bright and early in the morning. (actually it will still be dark).  The next post will be after we meet with Dr. Paley and his team regarding the upcoming surgery on Tuesday at 8:00.  Thanks again for your outpouring of love and kindness!
#GodisFaithful

Showers of blessings!

At lunch I was surprised with these gifts for our family.  I am again speechless.  EIS is a very special school...we take care of each other.  I love all of my teammates!  #Godisfaithful

The countdown has begun!

The weather is gorgeous today!  John Thomas is enjoying being outside playing on the hill with his friend, Ryan.  This time next week, he'll be in recovery and the surgery will be behind us.  6 more days.....

Balloon Soccer

John Thomas enjoyed playing "balloon soccer" in P.E.  I love getting pictures of him during the school day!

Surprise!

My sweet homeroom class and EIS Care Committee surprised me with 2 baskets of gifts for John Thomas and a basket of gift cards to restaurants for our family. My heart is full!  #GodisFaithful

Headed to Florida!

Brad, John Thomas, and myself will fly to Florida on Monday, Feb. 2nd.  After the consultation with Dr. Paley, we will decide which path we should take for our boy to get better.  If agreed, the surgery for John Thomas will be on Tuesday, Feb. 3rd.  We are so grateful for this opportunity and anxious for our boy to feel better!  Thank you for your continued prayers for  John Thomas and our family!

Divine Intervention

Our previous childrens' minister, Jennifer Scott, found out about John Thomas' diagnosis.  She is on staff at St. Mary's Children's Hospital in West Palm Beach, Florida.  Her daughter, Abby, is a patient of  Dr. Paley.  Jennifer reached out to us and urged us to come to Florida for a second opinion.  After Dr. Paley saw the x-rays of John Thomas, he said we needed to find flights to Florida a.s.a.p.  John Thomas is a candidate for a procedure that can be done in the first phase of Perthes that will shorten the recovery time, put him in a brace and out of the wheelchair.

Visit to Scottish Rite Hospital

We went to Scottish Rite on Jan. 7th in Dallas.  We were hoping for a different treatment plan.  It was so hard to keep John Thomas in the wheelchair, and he was in a lot of pain!  Dr. Kim was wonderful but confirmed the diagnosis that we received in Dec.  The treatment plan was to keep John Thomas in the wheelchair and to have a walker for home. At this point, Dr. Kim said that he would be in the wheelchair 12-18 months, depending on how his body healed.   We were scheduled for another x-ray in March.  Dr. Kim wanted to make sure that the head of the bone didn't collapse. 

We thought it was a pulled muscle.

On Dec. 12th John Thomas was diagnosed with Perthes disease. 

This disease caused from bloodflow not getting to the hipbone causing the bone to die.  There are 4 phases of this disease and can last from 1 year to 2 years.  John Thomas was ordered by the doctor to be in a wheelchair indefinitely.