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The Fight of His Life Continues: My Six Year Old Grandson Continues His Fight~A Photo Journal

Updated on June 19, 2017
pstraubie48 profile image

Patricia is a mother, a grandmother, a sister, a daughter whose passion is to put into writing things she feels and experiences .

Two sweet peas

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Please share this go fundme site....

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June 19, 2017 part 1

Our journey continues.

Heston Wayne celebrated his 7th birthday a few weeks back...it was a fun day for him to be a little kid. Often he is not a little kid living a 'normal' life...but you would not know it. His life with the jg tube and the distended belly, the sleepless nights filled with pain, the many almost daily bouts with nausea and subsequent vomiting are his new normal. He complains little and does not question why this happened to him.

He becomes very philosophical at times with deep probing questions about death, what it will be like when he leaves the planet, totally unprompted by anyone...he just wonders....He is a happy child ....and he fills the room with his joy....that may sound contradictory...but he does not dear death....just wants to understand it. And his Momma answers him....the words come...but she smiles and reassures him he is not going anywhere for a long time.

He is enchanted by rainbows ...I think I may have mentioned that in earlier posts....he lights up all over when he sees one.

His Momma told him that when he needs one most, one will appear, and that has often happened!!!

In a week he will go in for a new jg tube...they are supposed to be replaced every three month but his have been replaced more often due to unforeseen complications. So about the 26th of this month, if you have a few minutes for extra prayers and sending of positive energy, can you send some his way, please, and thank you?

Little Man's Smile Lights up a Room and Our Hearts

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June 19, 2017 part 2

My Stef has new medical concerns that are of a serious nature. I am not able to disclose those at this time. But, and there is almost always a "but"...she remains the determined Momma who cares for her sons...both of them (as Jay who is now a young man is besought by complicated medical issues and concerns of his own).

She soldiers on ....despite great pain and in the face of adversity that few are able to handle. I am her Momma so of course I think that she is amazing but others say the same of her....she just as her boys is an inspiration to us on a daily basis.

Our lives are filled with many obstacles ....and we can choose to find a way to make sense of what we face as we make this journey or to give up and give in....the first of these choices is the one we, as a family, have chosen.

Please once again, pray for and send positive energy to my Stef if you will. and thank you.

Getting Ready for the Day...tube is out for a bit this morning

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Update ....

Following is what I have just posted on gofundme...

Here is what is now happening with our little man.... Heston will be undergoing 3 procedures in June .. Inpatient procedures and we will be in for several days .. In the mean time we are adjusting formula for his feeding tube as he is still having issues with weight gain and his motility so we are combatting all of that ..

He will be getting an adapted stroller not a wheelchair as he couldn't get himself around anyway. So we are waiting on the insurance approval for that ,we are hoping they will approve it because we need something to accommodate his pump and such he has just simply out grown his jogger stroller.There are days he just has no energy at all to walk and those are the days we need it .. His good days though we encourage all the running and playing he can muster up. Hard to believe he will be 7 in just about a month's time .This past year has certainly been whirlwind but a blessing as well .. Had we not asked for a second we would not be on this path to one day getting him all he needs to celebrate many many more birthdays..

And now his Momma has new serious medical issues...Sssh,she wouldn't want me to tell you.... Thank you thank you so veryuch for helping.


Stimulation of Bone Marrow Begins

This past week, Heston Wayne was given his first injection in an effort to stimulate his bone marrow. He felt unwell for several days afterward and slept most of the days that followed.

Active searches are underway for a match for Heston Wayne. I will be posting photos of him at events where he has been to help find a match.

Please share this article with others....the family needs help financially and in their search for marrow.

And thank you.

Sweet Pea....as this journey was beginning

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Update February 20 Most Recent Hospital Visit

This week was a stressful week....God carries us through the times...I am sure of it. If we did not have His strength, I KNOW that we would not weather this storm. He carried us and still carries us through Stef's illness and Jay's...both of whom are still very ill.

This week Heston Wayne had a bilateral bone marrow biopsy...trying to determine how much closer he is to needing a transplant. The plan was also to rule out other illnesses that may be lurking within.

He also had a new gj tube placed as they must be changed every 3 months.

He was given a new tube which is a way for any food that goes into his tummy to pass out of his body...about a 4 hour process. He is surviving on the formula he receives through his gj tube. His tummy cannot handle food...his tummy becomes so distended it is in danger of rupturing that is the reason for this new tube.

So...this is where we are ....Heston Wayne is very fragile. So please send prayers and Angels to him and to the family.

Their financial situation is difficult as there is much insurance does not cover. So please share this hub to your social media sites. And thank you.

We are so extremely appreciative of the concern and generosity of those of you here on HubPages.

Will keep you updated.

Baby doll in ICU after attempt at ablation

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Thank you to each Hubber to has donated pennies....we need help please...please share and donate if you cn-

A few hours later...in ICU...

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Little Man faces new issues...

Let me begin by stating that Little Man, Heston Wayne, inspires us every day.

He has had more than many of us will face in our lifetime. Make no mistake about it...I know, we know, that many families across this nation and around the world face catastrophic, on-going illness ...we know that we belong to a group that we wish we do not...but the fact remains that we do. So we have chosen to embrace each day as that is what we have been given...today, these 24 hours...1, 440 minutes....We treasure each and every one of them.

Those of you who have been to pstraubie48 pages here on HubPages know that my baby grandson, Heston Wayne, is not the only family member to be besieged by illness. His Momma and his elder brother both have serious medical issues...their stories are here on HubPages...and those medical conditions continue to mount. That is perhaps why we are able to process as best as our minds can possibly do this journey Little Man is on.



What is a cardiac ablation?

According to Mayo Clinic...."Cardiac ablation is a procedure that can correct heart rhythm problems (arrhythmias).

Cardiac ablation works by scarring or destroying tissue in your heart that triggers or sustains an abnormal heart rhythm. In some cases, cardiac ablation prevents abnormal electrical signals from entering your heart and, thus, stops the arrhythmia.

Cardiac ablation usually uses long, flexible tubes (catheters) inserted through a vein or artery in your groin and threaded to your heart to deliver energy in the form of heat or extreme cold to modify the tissues in your heart that cause an arrhythmia."


Most Recent Happenings

It is now January 27th....this week has been filled with another trip to the hospital and another time for Heston Wayne to be under anesthesia.

He has SVT (supraventricular tachycardia)....his little heart will race and race ....he is often breathless...The plan was to go in and perform a cardiac ablation to help control his problems.

However minutes into the procedure his heart stopped beating, thankfully, only for 23 seconds. It started again on its on...his heart rate was 19 bpm for about 15 minutes. After he was stabilized he was in ICU for about 12 hours and received excellent care. His Momma was there for him as she is each and every day.

He did have an event recorder implanted which downloads his precious little hearts activity every 12 hours. It is 24/7 monitoring for which we are very thankful.

He continues to have major issues with his ability to be nourished. He has motility issues which will be addressed in March...his tummy becomes greatly distended when he has even a glass of milk or a glass of tea and a few chips. The majority of his nourishment comes through the gj tube which is not working very well at this point.

His Momma established "Heston's Heroes" pages ...if you go to the link below you can read a more detailed report on what is happening with our precious baby boy...and yes we call him our baby (but...not so much to him as he, of course, is not a baby in his mind.)

https://www.facebook.com/Heston-Heroes-102503070150776/




We Thank You

Just know that we are so thankful and feel so very blessed to have the positive energy and prayers of those of you who come to my pages and to Heston's Heroes pages to follow our journey and help us with this journey. Please know that many Angels are on the way to you.

And know that we include each family that has a similar journey in our prayers and send positive energy and good wishes and Angels to each of you also.

Some Quiet Time...Just before his Momma gets him ready for the day

Venting....

Just under the cover is the line that runs from his tummy area to the life-giving formula that is flowing into his body. He still is not gaining weight.

His tummy is often bloated and painful. His Momma vents him at least once a day. Venting is removing excess air or formula that has not passed through his tube.

Heston Wayne pulling the wagon with toys for kids

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The backpack

In case you have not read this in another article about Heston Wayne, the backpack is not just a toy carrying addition to his attire.

It is a way that his formula can remain connected to him as he travels around with his Momma.

Heston Wayne Collected Many Gifts for Kids in the Hospital/Staying at the Ronald McDonald House

The Bone Marrow Drive was held and it was a huge success. Hopefully a match for someone will be found...if not for Heston Wayne, hopefully, for someone in need.

Heston was scheduled to have surgery this month on his heart (doctors have put it off as he is too weak right now). He was concerned that Santa would not be able to find him. His Momma told him not to worry...Santa was magical and he would find him. So, he went off to bed where he spends much of his time now. He came back a bit later and asked, "but what about the other kids ? Will Santa find them?" His Momma reassured him that he would but he came back in a bit with his piggy bank.

"Here, I want to help buy presents for those other kids in case Santa cannot find them." (O, my....the tears flowed when I read this and it was all she could do not to cry.)

She said to him that she had an idea. Ask those who come to the Bone Marrow Drive to bring a gift for those children. He agreed that would be a great idea.

So on the day of the drive, folks came to be swabbed and to bring packages. Packages came all day. At the end of the day the huge boxes were overflowing...183 wonderful gifts for children.

What a delighted little boy there was!

And who says one person cannot make a difference.

On the following Wednesday he, his Momma, and his brother traveled to Orlando to deliver the packages to the Ronald McDonald House and to the hospital where Heston Wayne receives treatment...they were thrilled and so proud of Heston Wayne.

Heston Wayne as he delivers presents

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More news....Bone Marrow Drive Scheduled in Our Area This Weekend and Heston's Toy Drive...

As you know if you have read this hub and others about my grandson, Heston is in bone marrow failure in addition to being on a twenty four seven feeding tube (the third one placed less than two weeks ago as the others were not getting the job done...we are hopeful this one will.).My daughter has been encouraged to have a bone marrow drive as it is a matter of time till Heston will need a bone marrow transplant and finding one for him is very difficult.

Please view this video (my daughter, Heston's Momma was interviewed by one of the local radio stations on Monday)...it will fill in details for you.

https://www.youtube.com/watch?v=u37EKbgPcZ0

Please continue to share and please donate on gofundme.com if you can.

And thank you and many blessings of the season to you and yours. We are soooooooo grateful for the outpouring of love and generosity of others especially those who have never met me or him and only 'know' us via this hub.

God is good every day...He carries us up and over the difficult times and is the wind beneath our wind each day as we arise and embrace the wonder of each new day.

Most Recent News

Yesterday morning, Heston Wayne's Momma was flushing his line that runs to his gj tube and met with resistance in her efforts. She tries not to wake him during this time so he can get continued rest. However she decided to pull back the covers, thankfully, and his clothing and bed were soaked. The fluids including formula were all over him and the bed. So off to Nemours, his hospital in Orlando.

They deemed it necessary to quickly solve the problem. They found the tube had slipped up into his duodenum so it was necessary to place a new gj tube and cauterize the duodenum.

And, the gj tube was extended to 30 inches so that hopefully this will not occur again.

He is home and on complete bed rest for a week including needing assistance in and out of bed to the restroom.

So our reasons to be thankful continue to grow ....we are so thankful he is having these opportunities to become mending. And so thankful for his Momma being able to care for him with the assistance of Jay, his elder brother, and for his Daddy who works so hard every day insuring that the baby has access to medical care through insurance which by NO MEANS covers all expenses.

Feeling thankful, so very thankful, to each of you who are his HEROES.

Love and blessings and Angels to each of you this Thanksgiving Season and always ps

A second view of the gj tube Heston Wayne will recieve

This is a google image of what the gj tube configuration will resemble that Heston Wayne will receive. At present he has only the g tube.
This is a google image of what the gj tube configuration will resemble that Heston Wayne will receive. At present he has only the g tube. | Source

Most Recent News

On the 17th of this month (November), Heston Wayne will receive a gj tube. I have attached two photos that are Google images of what he will have. The hope is that absorption will become possible with this new configuration.

He may also have pancreatic stimulation at that time depending on how well he tolerates the anesthesia...he has a heart condition now so putting him under is problematic. So please send along more positive energy and prayers for him.



This is a Google image of the gj tube...this is what Heston Wayne will have on the 17th. He presently has the g tube only. (I make no claims to this photo.)
This is a Google image of the gj tube...this is what Heston Wayne will have on the 17th. He presently has the g tube only. (I make no claims to this photo.) | Source

Sweet Little Heston Wayne always has a smile for Nini

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My daughter does use the GranuLotion to care for my grandson. I asked her why she recommends it and she said:

"Because it knocks out the granulated tissue. And the granulated tissue is very painful to Heston Wayne so I work real hard to keep it at bay."

Update #1

Heston Wayne and His Momma are home....He is sleeping.

No further testing will be done at this time. During the testing he had numerous attacks (svt's) and the doctor did not want to put him under anesthesia again tomorrow.

He will wear an event monitor that will provide 24/7 telemetry recording his heart's activity.

Cardiomyopathy has not been ruled out. But the doctor would like to see the results of these recordings before going forth unless he has a severe attack. Under that circumstance he will be taken to the hospital.

So we do not know anything new but we feel comfortable with this cardiologists plan of action and his concern for Heston Wayne.

Thank you to each of you who is following his journey, our journey.

that's his Mario hat...a favorite character of his at present

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Another Miracle

On the morning of May 27th, 2010, another amazing miracle appeared on this wondrous planet. A perfect little baby....ten fingers, ten toes, a glint in his eyes told us that he would be special and unique just like his brother before him.

And, since I am his grandmother, Nini, to him, I can attest to the fact that he is A M A Z I N G!!

He makes every day brand spanking new!!!

Can you tell he is adored??

Even his name is one-of-a-kind....Heston Wayne. He is named after two remarkable individuals: Charlton Heston and John Wayne....quite a name to live up to and live up to it...he does.

He is inquisitive, vocal, opinionated, clever, talented, loving, thoughtful, long-winded, enthusiastic, intelligent (very), and warm-hearted.

And...He is very ill. He is been through so much in the six years he has been on the planet.

No Diaignosis Could Be Found

Several posts about Heston Wayne have been published here on HubPages...some of them going back several years before his ill health really took hold. Things were going on but no definitive diagnosis was ever made until the last about 8 months. Things were festering and developing but, as is the case with other rare illnesses, it was difficult to pinpoint the reasons for his continuous tummy pains, frequent violent headaches, little interest in eating, and on and on.

He was finally diagnosed in Boston at Dana Farber with Shwachman Diamond Syndrome this year. (The link provides information about that diagnosis),

Cardiomyopathy is a condition where the heart muscle is abnormal. Cardiomyopathy makes it harder for your heart to pump and deliver blood to the rest of your body. Cardiomyopathy can lead to heart failure.

source: Mayo Clinic

What is Happening Now....

In the other hubs I have shared about Heston, details about his condition are provided.

This hub is about what is happening at present.

About six weeks ago when he visited the doctor, his Momma was told that his heart is beginning to weaken, that it is having to work too hard now, much harder than it should.

She was cautioned to be certain he avoided sustained physical activity when playing. This directive has not been difficult because this once bundle of energy little guy who loved to run and play outside, often sleeps 12 to 14 hours a day, due to fatigue and lack of energy.

His g tube is his new normal

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His Little Heart Has to Work So Hard to do Its Job

His heart has sustained injury, for lack of more adequate terminology due to his body's inability to absorb the nutrients that it so desperate needs.

In the last few weeks he has had frequent bouts of tachycardia often several times a day. Many times it happens just as he settles in to try to sleep.

His doctors are quite concerned and are exploring the cause today.

Transesophageal (tranz-ih-sof-uh-JEE-ul) echocardiography (EK-o-kar-de-OG-rah-fee), or TEE, is a test that uses sound waves to create high-quality moving pictures of the heart and its blood vessels.

NIH ...source as well as the doctors with whom my daughter is conferring and who will perform the procedure

Today and Possibly Tomorrow

Today--Heston Wayne will be sedated and doctors will perform

  • an transesophageal echo
  • an MRI
  • Depending the results of these procedures, tomorrow he will have a cath and a biopys to determine if he has myopathy.

"Ok, so I am trying to play this game!!"

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Where YOU Fit in this Picture....

All I ask is that you send positive energy, prayers, love, good vibes, and all of the other positives you can muster up.

Please also share the word that we are still raising money on gofundme for Heston and I am still asking for folks to send pennies to my address: POB 554 Hawthorne Fl 32640 The formula he is on costs costs approximately $850-$1080 a month. AND it is not covered by insurance. So we need help.

At the first of the year, the cycle for the $12, 000 a year deductible will begin anew....yes, that is a LOT of numbers. It makes us wonder WHY we have insurance when the deductible is so high.

So please help.

And once again, thank you so very much.

As soon as I know something definitive I will let you know.

Hopefully this post explains why I am not here like I wish I could be.


Bless each of you...Angels are on the way. ps

Just relaxing....

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In July, my daughter's high school class sponsored a golf tournament in Daytona for Heston. Heston wanted to stand out and wave as each cart headed out to play.

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Sweet Baby Angel Boy Snuggled Up and Resting

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Sometimes a Ride in a Buggy is a Good Thing

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Just the Sweetest Little Face....Love Him So Much

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He is MY Hero....

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This is My Profile Photo..He was at Ronald McDonald House last visit to Nemours Hospital in Orlando.

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Acknowledgment

All photos in this article are used with permission ....they were taken by Heston Wayne's Momma....sscottdunnam

A Few Months Back when he got the ng tube which was not sufficent

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Waves of nausea and vomiting after placement of the tube

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© 2016 Patricia Scott

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    • pstraubie48 profile image
      Author

      Patricia Scott 2 months ago from sunny Florida

      Thank you so much, Shyron. And if you can please pray for his Momma....we need more Angels for her too. Please know that I send prayers up for you too.

      Angels are once again on the way ps

    • Shyron E Shenko profile image

      Shyron E Shenko 2 months ago from Texas

      I am still saying prayers for you beautiful, courageous grandson. He is the most handsome little boy with a big heart. I treasure the heart and place them on the corner of my dining table so that every time I pass the table I think of Heston.

      With much admiration, I had to come back to reread his story.

      Blessings always

    • pstraubie48 profile image
      Author

      Patricia Scott 2 months ago from sunny Florida

      Thank you as always Manatita for your words of encouragement. Heston Wayne came home from hospital yesterday after almost a week. God is in the house....

      Angels are on the way to you once again ps

    • manatita44 profile image

      manatita44 2 months ago from london

      Thanks again,

      Another aspect of this great and courageous journey. Thanks for the journals. Appeal noted. God bless your Hearts. All my Prayers.

    • pstraubie48 profile image
      Author

      Patricia Scott 2 months ago from sunny Florida

      Hi Peggy...yes, it would be awesome to meet in person. It really depends on how my family is doing at that time whether I can come or not. Keeping my fingers crossed.

      Know that Angels are headed your way. ps

    • Peggy W profile image

      Peggy Woods 3 months ago from Houston, Texas

      Hi Patricia,

      Let me know if your plans gel to visit Texas. Would be wonderful to be able to meet you in person.

    • pstraubie48 profile image
      Author

      Patricia Scott 3 months ago from sunny Florida

      You are so precious, Peggy. We are so blessed despite all that has happened. Stuff happens to every family...it is a choice how we deal with it. We choose to live now...and to try not to worry...the operative word is 'worry' as we know that worry changes nada.

      Angels once again are on the way. ps I MAY be in Texas end of Sept or early Oct for a short visit in Austin.

    • Peggy W profile image

      Peggy Woods 3 months ago from Houston, Texas

      Dear Patricia,

      My heart bleeds for you and your family. You have had and continue to have so many trials when it comes to medical issues and the resulting financial burdens resulting from it. I still have your last letter and will answer it soon.

      It was nice to see that Audrey Hunt found your notice on my Facebook page. Will share it again and hope others read it.

      May God bless you.

    • pstraubie48 profile image
      Author

      Patricia Scott 3 months ago from sunny Florida

      Dear Audrey

      Thank you so much for sharing your kind words....the more prayers and positive energy we have for our family the more power we have to fight against all that they face. Do understand please that Heston Wayne, His Momma, and his brother Jay are soldiering on....each day is a new day to embrace and enjoy despite the adversities.

      Know too that Angels are on the way to you. ps

    • pstraubie48 profile image
      Author

      Patricia Scott 3 months ago from sunny Florida

      Dear Peggy

      Thank you again and again for your kind words. Since I wrote to you, even more things have happened....it is frightening but we continue to believe our mantra....live today...and God's strength and goodness will see us through. Baby goes next week to get a new jg tube...he is eating only a miniscule amount by mouth and is very lethargic. Prayers and positive energy still much needed. Angels are on the way...loving thankful Angels are on the way to you, special Peggy. ps

    • Peggy W profile image

      Peggy Woods 3 months ago from Houston, Texas

      Received your recent thank you note and letter Patricia. So very sorry to know that your daughter is now facing more serious health concerns. My prayers continue for you and your entire family and will send more $'s as soon as we can. Will share this again and hope more hearts are opened enough to send some extra dollars your way.

    • vocalcoach profile image

      Audrey Hunt 3 months ago from Nashville Tn.

      My heart hurts for this precious boy. I found your hub through a link on Peggy Woods Facebook post. I hope and pray that enough donations are made to help with these enormous costs. I'll certainly spread the word and do what I can.

      My love, concern and prayers to Heston and all the family.

    • GalaxyRat profile image

      GalaxyRat 3 months ago from The Crazy Rat Lady's House

      I am praying for him... and for your family. I hope everything goes well... thank so for the update. All my hugs go out to this amazing little child. He is a fighter... reminds me so much of my early life as a premature quadruplet, and all my thoughts go out to y'all.

    • Peggy W profile image

      Peggy Woods 5 months ago from Houston, Texas

      Hope you are taking a few moments of time for yourself Patricia. Your entire family is relying upon you and I know you are their tower of strength. May God's angels help lift you up and support you when you get tired as I am sure you must at times. Sending prayers your way as usual.

    • pstraubie48 profile image
      Author

      Patricia Scott 5 months ago from sunny Florida

      You are so very welcome, Bob. You are one of our Angels and we are so thankful. It is a journey for sure and now my daughter has received new (devastating ) news about her health. All we can do is know that God is in the house and feel comfort from those who care. Know please that Angels are on the way to you and your family ps

    • Bob Bamberg profile image

      Bob Bamberg 5 months ago from Southeastern Massachusetts

      Thanks for the update, Pat, as many of us are very much interested in this amazing little boy's progress. Please give Heston a hug for us and tell him that a lot of people are trying to help him get well. Thoughts, prayers and pennies!

    • pstraubie48 profile image
      Author

      Patricia Scott 5 months ago from sunny Florida

      Thank you, Peggy. You just do not know how important your help is. Hugs and love and many Angels are on the way to youp

    • Peggy W profile image

      Peggy Woods 5 months ago from Houston, Texas

      I'll share this again on Facebook and hopefully a few hearts will be touched to open their wallets and send some dollars your way. My prayers continue for you and your family dear Patricia.

    • Greensleeves Hubs profile image

      Greensleeves Hubs 5 months ago from Essex, UK

      Just seen this Patricia - I have not read the previous hubs about your family's illnesses, and specifically Heston's condition, so I will have to go back and try to read from the earliest article. But I saw this as the most recent update.

      So sorry to hear that you and your family have been going through this. The heartaches and trauma of illness are enough to bear without the financial worries. I shouldn't make political points here, but it does make me more thankful than ever that here in the UK, our Health Service is paid for through taxes. I believe that conditions such as this would be covered by that. No one should have to face the burden of paying for vital health care of this kind.

      As I say, I have only just been made aware of this, but I will read through some of the other hubs. In the meantime thoughts are with you and I sincerely hope that the news about your grandson and the rest of your family will get better with time. Alun X

    • Nadine May profile image

      Nadine May 6 months ago from Cape Town, Western Cape, South Africa

      Patricia this is the first time that I have read this article about your grandson Heston. I first went to some of your previous posts to find more about his illness, but the videos are not there anymore. He is so fortunate to have you as a grandmother. All the photos of Heston are lovely. Does he have any brothers or Sisters? Sorry to ask, but I have not been able to read more about your story today. What a difficult journey he already has to experience being so young. It must also be so very hard to watch the suffering the parents go through, you being the grandmother, and to think that a medical aid does not pay all the costs is truly diabolical.

      I am now sending lots of positive energy, love and good vibes to the whole family and send visions that abundance is showing up on your bank account for the medical bills and more...enough to wipe off any debt forever and ever...

      Oh I read now that Hester has an older brother...He also needs some cheering up, so please show us some photos of him with his brother.

      Greetings from Cape Town

      Nadine

    • manatita44 profile image

      manatita44 6 months ago from london

      Thank you for sharing Patricia. It is a very warm and yet very real situation which requires support from us all. I trust that you are being helped and that you will continue to be helped through the human mediums of the Divine. May God continue to bless you all in these trying times.

      I am 65 yrs, home and not working through illness myself, but I have sent you a small donation. I've also sent the details and picture via twitter and Facebook.

      Let me say that you have behaved admirably and continue to behave admirably for so many years! I'm sending you, family and especially your grandson, all my Heart's concern at this special time.

    • pstraubie48 profile image
      Author

      Patricia Scott 6 months ago from sunny Florida

      Thank you, Alicia....all I can say is that we remain hopeful. We are so blessed to have so many who care and who help us with this walk.

      Angels are once again on the way to you ps

    • AliciaC profile image

      Linda Crampton 6 months ago from British Columbia, Canada

      Heston Wayne is such a brave and kind boy! I'm sorry that he, you, and your family are going through such a difficult time. I hope the fact that you now have a diagnosis for his condition will eventually lead to good news. My thoughts are with you.

    • pstraubie48 profile image
      Author

      Patricia Scott 7 months ago from sunny Florida

      Thank you Jackie He is struggling physically but his spirit is a light to each of us....God is good...thank you for sharing and your blessings.

      Angels are once again on the way to you ps

    • Jackie Lynnley profile image

      Jackie Lynnley 7 months ago from The Beautiful South

      I will start sharing this again and hope this wonderful beautiful boy overcomes all that comes at him and becomes that wonderful adult with so much understanding and love and reward for his perseverance. He deserves so much and I know he will receive more than we any can fathom.

      God bless.

    • pstraubie48 profile image
      Author

      Patricia Scott 7 months ago from sunny Florida

      You are so right...Persp....he does have a purpose...he was meant to be on the planet. Thank you for caring and stopping to comment. We feel the love from so many who take the time to send their love. Angels are headed your way this morning ps

    • pstraubie48 profile image
      Author

      Patricia Scott 7 months ago from sunny Florida

      Thank you so much for caring enough to stop and share your thoughts with us. Our Little Man fills us with awe each day...an extra prayer would help this morning as he is sick on top of his usual challenges.

      Angels are on the way this morning ps

    • pstraubie48 profile image
      Author

      Patricia Scott 7 months ago from sunny Florida

      Thank you, Shyron....he is Amazing...I am his Nini and of course I will say that but others say that to us as well. He is a trooper and soldiers on every day living his new way of life. This month is filled with much that is challenging but we move on through it with him.

      Thank you for the hug...I will hug him for sure...and Mario is a favorite for sure...I get him little tiny Mario toys when I can find them...he loves the color red so I also hunt for little things that are red also.

      Hugs and love and Angels are headed your way ps

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      Patricia Scott 7 months ago from sunny Florida

      Thank you Peggy for continuing to uplift our Little Man. He is truly an inspiration to us each and every day. He takes it all in stride. Many new things are in store....next week two major surgeries...so please continue to send those prayers.

      Know please that you and yours are remembered in my prayers daily. Angels once again are headed your way. ps

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      Peggy Woods 7 months ago from Houston, Texas

      Just want you to know that your darling little Heston Wayne and your entire family remain in my prayers. Hope you are holding up as well as can be expected Patricia. Thinking of you! Thank Heston Wayne for his lovely thank you note. It really touched my heart.

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      Demas W Jasper 7 months ago from Today's America and The World Beyond

      And to think you took time to read one of my Hubs, and even the time to comment!

      We are all in this together, sons and daughters of a loving Heavenly Father.

      As a pope once said, "There are no coincidences." Manolie and I believe that. Heston has a purpose, just as we do. He is living his with courage and long suffering, along with his devoted family. What a triumph that is.

      Send the whole family our love and know that we are praying always for him and others in need.

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      BODYLEVIVE 7 months ago from Alabama, USA

      You have an angel with a pure heart. Right now Heavenly Father, Heston Wayne has endured more than any child should, he's your son and I ask of you, that you will heal and restore his broken body. Father, you couldn't have brought him this far to leave him this way for the rest of his little life. I speak restoration over this child in the Might name of Jesus. Amen.

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      Shyron E Shenko 8 months ago from Texas

      Patricia, sending all the blessings it is within my power to send, Heston Wayne is my hero, and I love him and I love Super Mario, and every time I hear about Mario, I think of Heston Wayne, give him a warm and gentle hug for me.

      Thank you, for keeping us updated.

      Blessings and hugs my dear friend.

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      FlourishAnyway 8 months ago from USA

      Thanks for the update. He seems like such a precious child. My heart is with you.

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      Peggy Woods 8 months ago from Houston, Texas

      Hi Patricia,

      I just read Mike Friedman's book THE CARRIAGE DRIVER and enjoyed it. It does make one think! Some of us are in this life for a long time and others a short while. Just think of the impact your young Heston Wayne has already made on many people's lives. Many people who live long lives only create a ripple. You can rest assured of his place in heaven when he is called!

      So sorry to hear that you are having major sinus problems. I suffer from them also. If you have never tried a neti pot...I would recommend it. It definitely helps!

      Prayers and good wishes are winging their way over to you and your family.

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      Patricia Scott 8 months ago from sunny Florida

      O my Peggy...I am writing this response through tears.....you touched my heart. He is on a mission from God...we say so often he was meant to be on the planet....he inspires us daily...I hope this makes sense as I can barely see the screen of my laptop

      Thank you so much for caring...as I have said so many times, your kind words and concern and prayers give us so much strength.

      God's peace and many Angels are headed your way this morning ps

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      Patricia Scott 8 months ago from sunny Florida

      Thank you so much always exploring.....I hope you realize that we feel the prayers that are coming his way...please continue them...his struggle continues and God's strength is seeing us through.

      Wishing many wonderful things for you and yours in this new year.

      Angels are bringing blessings this morning ps

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      Peggy Woods 8 months ago from Houston, Texas

      You wrote this about Heston Wayne: "He really does think of others....he is so careful to not hurt anyone's feelings and if he thinks he has, he is quick to ask forgiveness."

      We should all be so loving and forgiving. He is one special little boy! His mission on earth undoubtedly has the angels above smiling.

      Wishing you and your entire family a blessed new year ahead.

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      Ruby Jean Fuller 8 months ago from Southern Illinois

      I wanted to tell you that we had a special prayer for Heston at church on Christmas day. The church learned about his struggle and who he was named after. My prayers are forever ongoing. God bless...

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      Patricia Scott 8 months ago from sunny Florida

      Thank you so much, colorulone. We are so genuinely touched by the prayers and good wishes that we receive.

      Heston Wayne brings so much joy to our lives ...we are truly blessed.

      Hoping all is well with you. Angels are once again on the way ps

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      Patricia Scott 8 months ago from sunny Florida

      Thank you always exploring for your kind words. It is a wonderful time of the year and we are so thankful for each blessing and wish of goodness that comes our way.

      Hoping all is good with you and yours and wishing a blessed New Year to you all as well. Angels are once again on the way to you ps

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      Patricia Scott 8 months ago from sunny Florida

      It is always so nice to come to this page and find a message from you, Peggy. We are all uplifted by the good thoughts that we receive. He is so amazing, Peggy. He really does think of others....he is so careful to not hurt anyone's feelings and if he thinks he has, he is quick to ask forgiveness. We are indeed blessed to have him in our family.

      Thank you for your concern and unwavering support.

      Angels are on the way to you all this morning ps

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      Susie Lehto 8 months ago from Minnesota

      Patrica, I hope your Christmas is a happy one. And, a very special blessing for Heston. I have been thinking of him and sending prayers his way.

    • always exploring profile image

      Ruby Jean Fuller 8 months ago from Southern Illinois

      Patricia, Heston is still in my prayers. God bless him and the family. Sending love's energy this Christmas Eve...

    • Peggy W profile image

      Peggy Woods 8 months ago from Houston, Texas

      Thanks for the update Patricia. Keeping you and Heston Wayne and your entire family in our prayers. He is such a little trooper and the toys that were collected for other kids, via his suggestion, is inspirational for everyone. Despite his severe illness...he still thinks of others. Bless him and bless all of you. Sending prayers and more pennies your way.

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      Patricia Scott 9 months ago from sunny Florida

      Thank you Peggy...I have had trouble getting my comments on....I responded to a number of these quite a bit ago and they did not show up so I am doing so again.

      Thank you thank you for all of your good wishes...and they are returned to you ps

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      Patricia Scott 9 months ago from sunny Florida

      Hi Peggy...yes, it was and so much good came from it. She has had her own physical issues so I have been called away from HubPages. And it is such a busy time as you know that there just do not seem to be enough moments in the day to get around to everything.

      We were so touched by Heston's desire to reach out to others...he inspires us each day.

      Hoping you and your family have a lovely Christmas and a blessed New Year. Angels are on the way ps

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      Peggy Woods 9 months ago from Houston, Texas

      Hopefully my last comment was recorded. Am definitely sharing this! May God bless everyone involved in this fight for good health for not only Heston Wayne but others as well. Virtual hugs and real prayers are being sent your way.

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      Peggy Woods 9 months ago from Houston, Texas

      Wow...that was a great interview that Stephanie did hoping to bring in more bone marrow donors. It is heartbreaking to think that in some cases of perfect matches the donors backed out only to have people die as a result. Shameful! I am too old or would do it. Sending more prayers your way. Heston Wayne is an inspiration to so many people. He is certainly special in the eyes of God. Bless you and your entire family! Sharing one again.

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      Patricia Scott 9 months ago from sunny Florida

      Hi btrbell...he is an inspiration to us daily. He has adjusted so well to his new life. It is simply amazing to us all. His brother did the same thing (and still does at age 21) after his similar journey as a young child

      Hoping all is good with you. We just keep on keeping on.

      Angels are once again on the way to you ps

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      Randi Benlulu 9 months ago from Mesa, AZ

      What a precious little guy he is! I love seeing how amazing he is. I just wish ge didn't have to go through all this! Poor little guy. Thinking of all of you and praying for strength. ❤

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      Patricia Scott 9 months ago from sunny Florida

      Hi flourishanyway

      It is difficult but you can't really tell him that. His new lifestyle is his new normal...he has adjusted so well...it is amazing. He, like his brother, whose youth was very similar to Heston Wayne's also adjusted to the stream of doctor visits that he endured without complaint, as if that was how things were so he would live his life despite being ill.

      How blessed we are to have these two precious boys (one now a young man) in our lives.

      and thank you for stopping to read and share your thoughts.

      Angels once again are on the way ps

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      FlourishAnyway 9 months ago from USA

      Such a difficult journey for such a young fellow, and so tough to watch for loved ones, I'm sure. May you have all the peace and strength and resources needed as you continue on this difficult path forwards.

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      Patricia Scott 9 months ago from sunny Florida

      Thank you, Rolly. We are so blessed that so many care about him. He is a doll...that is all I can say. He and his older brother have both stolen my heart.

      Thank you again for your kind words.

      Angels once again are headed your way ps

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      Rolly A Chabot 10 months ago from Alberta Canada

      Hi pstraubie48...

      Special hugs and prayers from Canada for your grandson Heston... know that you are dearly loved as all the family continues on this journey... sending healing angels...

      Hugs and Blessings

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      Patricia Scott 10 months ago from sunny Florida

      Thank you, Audrey....we are blessed...one day at a time ....is how we make this journey.

      Love and blessings for a lovely Thanksgiving Angels are once again on the way to you. ps

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      Audrey Howitt 10 months ago from California

      Hugs, hugs and more hugs! Thank you for your beautiful spirit!

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      Patricia Scott 10 months ago from sunny Florida

      Thank you, Gypsy Rose Lee. He has new issues since I posted the most recent update and do not know what they will mean. But we have today. And we revel in him and the joy he brings us.

      Angels are once again on the way to you ps

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      Patricia Scott 10 months ago from sunny Florida

      Thank you Nell for your kind words. He is fragile and has more new issues but we are so thankful today for each new day for us and with him.

      Wishing you a lovely and blessed Thanksgiving ps

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      Gypsy Rose Lee 10 months ago from Riga, Latvia

      God bless that sweet little boy. He is adorable and it breaks my heart to think of all he has to suffer. I now God is looking out for him and I will put him into my special nightly prayers. Hugs to you and love to Heston.

    • Nell Rose profile image

      Nell Rose 10 months ago from England

      Bless him poor little guy, hope everything goes well for him.

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      Patricia Scott 10 months ago from sunny Florida

      Thank you Martie for your kind words. All of the positive energy and blessings he receives helps more than you know.

      Angels are on the way to you this morning. ps

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      Martie Coetser 10 months ago from South Africa

      Auw, I am so sorry to hear about your grandson's fight against Shwachman Diamond Syndrome. It is almost unbearable, seeing our children and grandchildren suffer pain and discomfort.

      I'm sending lots of positive thoughts wrapped with love. May Heston Wayne receive all the love and strength he needs to fight this horrible syndrome, and may his parents and grandparents, too, receive the blessing they need.

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      Patricia Scott 10 months ago from sunny Florida

      Thank you, happymommy...yes he had the surgery and got home about 5 last evening. He is not feeling great and has a fever so they may have to return to the hospital. We are hopeful not.

      Your thoughts are so appreciated.

      Have a blessed and lovely Thanksgiving ps

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      Patricia Scott 10 months ago from sunny Florida

      He IS amazing, Jodah. They got home from the hospital about 5 last night...he is in a lot of pain, more than was foretold, and has a fever. They may be returning to the hospital today. We are praying not.

      Thank you for stopping...

      Angels are once again on the way ps

    • Happymommy2520 profile image

      Amy 10 months ago from East Coast

      Hi there. I just read your post that your little guy is getting surgery again. I will say some prayers for him for at least the next few days. I wish your family a happy & healthy Thanksgiving!

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      John Hansen 10 months ago from Queensland Australia

      Poor little guy. He is so brave and from the pics looks so positive. Sending good vibes, wishes and prayers his way. He deserves a miracle.

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      Patricia Scott 10 months ago from sunny Florida

      Shyron, you are so dear for taking the time to compose little passages for our lovely boy. We remain ever hopeful that this new surgery will help.

      Angels are keeping busy tonight coming your way ps

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      Patricia Scott 10 months ago from sunny Florida

      Thank you Jemuel for stopping to read and comment. I will read your comment to Heston Wayne. He will be very touched no doubt. He knows of so many who care and show concern for him.

      Angels are once again on the way to you ps

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      Patricia Scott 10 months ago from sunny Florida

      Your quote from Aristotle is so spot on...am adding it to those that help keep me grounded and centered. Little Man is amazing...thank you so much for your kind words and thoughtfulness...we feel the caring and concern from around the world. If you view other comments I have written today you will see that Heston Wayne has a big week ahead. Please keep him in your thoughts and thank you so much.

      Angels are once again on the way to you ps

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      Patricia Scott 10 months ago from sunny Florida

      Thank you so much , lawrence...and we KNOW the power of prayers. If you read other recent comments I have made, this is a big week for little man. He will have another surgery so many prayers are needed and welcome.

      Sending Angels and prayers and blessings all the way to New Zealand.

      ps

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      Patricia Scott 10 months ago from sunny Florida

      Thank you Peggy....we so need financial help to pay for his formula and other needs that are not met. I keep wishing I would win the lottery but it is necessary to buy tickets to do so.... :D

      He is an amazing little man and we remain ever hopeful that good things are coming. We are truly blessed in so many ways.

      Hoping for you and yours a wonderfully blessed Thanksgiving.

      Angels are always on the way to you ps

    • Shyron E Shenko profile image

      Shyron E Shenko 10 months ago from Texas

      "The ideal man bears the accidents of life with dignity and grace, making the best of circumstances." __ Aristotle

      I just read the quote above and instantly thought of Heston.

      Angels, pennies and lots of love with all the blessings it is within my power to send are on the way

    • Shyron E Shenko profile image

      Shyron E Shenko 10 months ago from Texas

      Patricia, thank you for the update on

      Our inspirational hero

      Heston shows us how to inspire

      When things are not going right

      Without grumbling, griping or complaining

      He touches all who hear of him

      We admire his strength of character.

      We all love you Heston.

      Blessings and hugs dear friend.

    • jemuelO profile image

      Jemuel 10 months ago from Cebu, Philippines

      Keep on fighting, brave Heston! I am sending my prayers to you. I know this has been a tough journey, but hang on tight there... you are courageous and amazing kid.

      Thanks Patricia for keeping us updated. I can't wait to read about Heston's recovery in the next few days.

    • lawrence01 profile image

      Lawrence Hebb 10 months ago from Hamilton, New Zealand

      We're praying

    • Peggy W profile image

      Peggy Woods 10 months ago from Houston, Texas

      Continued prayers and good wishes are headed your way. Will also share this again and hopefully those who are in a position to help will do so.

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      Patricia Scott 10 months ago from sunny Florida

      O thank you so very much for taking time to stop and send good wishes to our little doll. We are so humbled by each and every one who reaches out....He is an amazing little doll.

      Angels are on the way to you this morning ps

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      Patricia Scott 10 months ago from sunny Florida

      Thank you Peggy...we are so blessed and so grateful to have so many who care about this little man. We just keep hoping we can find a way to provide for all of his needs.

      Angels are on the way to you, dear Lady, for your kindness.

      Angels are on the way to you this morning ps

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      Patricia Scott 10 months ago from sunny Florida

      Thank you, always exploring--- this week is a big week. All good wishes and good thoughts are needed and appreciated.

      Hugs and Angels on the way to you ps

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      Patricia Scott 10 months ago from sunny Florida

      He is a precious little guy, for sure. We are so blessed that he came into our lives and we are doing everything to help him begin to gain weight and be on the road to recovery. He has so many issues for a little guy that it is amazing to us how well he handles all of this.

      thank you so much for your thoughtfulness in stopping to read and comment. Angels once again are headed to you ps

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      Shauna L Bowling 10 months ago from Central Florida

      Patricia, my heart breaks for you, Heston and all of his family. What's amazing is how positive he is despite his illness and hindrances. I'm sure he's an inspiration to you all to remain strong and keep up the good fight.

      My prayers are with you and sending positive energy your way.

    • Peggy W profile image

      Peggy Woods 10 months ago from Houston, Texas

      Your precious little grandson is enduring so much and it is heartbreaking to know about it. Will definitely keep him in my prayers and will send another small check your way. Keeping you in my prayers as well! Why some people have to suffer so much in this life will undoubtedly be answered when we get to the next one. Bless you and your entire family!

    • always exploring profile image

      Ruby Jean Fuller 10 months ago from Southern Illinois

      Patricia, I still pray for Heston nightly. God bless you and the family...

    • colorfulone profile image

      Susie Lehto 10 months ago from Minnesota

      Heston Wayne, is adorable, Patricia. My prayers and thoughts are with him and the family. I wish I could give you a huge right now m'dear. It is terrible how healthcare costs increase and the deductibles are so high.

      God bless.

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      Patricia Scott 10 months ago from sunny Florida

      Walking with Heston Wayne through his journey is deja vu as we walked a very similar walk with my eldest grandson, Jay. We were told time and time again he would not survive past age 6, 9,, 13....but God is in the house and he is still on the planet and he is 21!!!! So we remain ever hopeful that answers can be found to help him gain weight and that his other medical concerns can be addressed in a timely manner.

      Angels are on the way today...thank you for stopping by ps

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      Devika Primić 10 months ago from Dubrovnik, Croatia

      Heston is courageous and so sweet. To go through so much is such a journey for him.

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      Patricia Scott 11 months ago from sunny Florida

      We are so blessed, Theresa....God is indeed carrying us up and over the difficult times. We are concerned but keep our eye on God's promises.

      Hoping all is well with you...I think of you often.

      Blessings and many Angels headed to you and your family. ps

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      Faith Reaper 11 months ago from southern USA

      Bless his precious little heart. Thank you for keeping us posted on this difficult journey and your sweet Heston, Patricia. I am stepping up my prayers!

      He is such an adorable child and a strong little fighter too.

      I'm sorry I missed this one some how and thankful you visited my page to prompt me to check here.

      It is evident just how loved he is in this life. May God continue to give you the strength to continue to persevere through these trials.

      Hugs and much love and Angels already there as always

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      Patricia Scott 11 months ago from sunny Florida

      O Nell...we are so thankful for your good thoughts. We treasure every day and hope answers come soon.

      Angels are on the way to you this evening. ps

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      Patricia Scott 11 months ago from sunny Florida

      So very appreciative Blossom of your kind words. We are so thankful for all of the good vibes and prayers that come our way.

      Angels are headed to you this evening. ps

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      Patricia Scott 11 months ago from sunny Florida

      Thank you so very much, Happymommy. We feel surrounded by God's love.

      We remain hopeful that answers will come.

      Angels are headed your way this afternoon. ps

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      Patricia Scott 11 months ago from sunny Florida

      O Hi Rachel...thank you, dear lady, for your kind words. Please if you can, share this message with your friends too. We need help.

      Know that hugs and Angels are headed your way this morning ps

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      Patricia Scott 11 months ago from sunny Florida

      O Dreamer Meg....I do so wish I could have/be writing about something else but I do so adore him and want to get the word out as we need help to provide his medical care.

      Angels are once again on the way to you ps

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      Patricia Scott 11 months ago from sunny Florida

      Thank you, JG....we are so thankful for all prayers....and I do have to agree...he is adorable....He is a joy--it breaks my heart to see him in pain and not well.

      Know that Angels and prayers are on the way to you ps

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      Patricia Scott 11 months ago from sunny Florida

      Thank you always exploring for your kindness and for sharing his needs at church. We do so each Sunday at our church and many are praying. I do so believe in the power of prayer...we have seen it work!!!

      Prayers and Angels are on the way to you this morning. ps

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      Patricia Scott 11 months ago from sunny Florida

      Thank you for the prayers, Ms. Dora. We can feel the love and are so thankful for your concern and for God's strength and power.

      Angels are on the way to you this morning. ps

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      Dora Isaac Weithers 11 months ago from The Caribbean

      What a precious little boy! Sent up a prayer that God will strengthen him, you and all the family and that God's favor will smile on the entire situation.

    • Happymommy2520 profile image

      Amy 11 months ago from East Coast

      I remember reading about your grandson a few months ago. I will be sure to light a candle for him this week when I go to mass. I will also check out your donation page. Lots of luck!

    • Nell Rose profile image

      Nell Rose 11 months ago from England

      I feel the same as Bill, its so hard to read something like this, but I can only hope and say prayers for the little man, xx