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Tracy Rheault LaVista, NE Follow

$680 of $5,000

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Henry Frost is a vibrant, comical, and beautiful little five (almost six) year old boy.  His life has been extremely complex, and he has been through more in his short time on earth than most will endure in their entire lifetime.  Henry was born in December of 2013, and within the first 24 hours was transferred to the NICU at Methodist Women’s Hospital in Omaha, NE. He stayed there for twelve days while hundreds of thousands of dollars worth of tests were performed in an attempt to determine what was causing Henry’s health concerns.  Surprisingly, all those tests came back in his favor and he was sent home, having had the diagnosis of Arthrogryposis Multiplex Congenita placed on him. This is a condition characterized by constricted joints that do not have full range of motion and includes hypotonia, or low muscle tone.  

Over the course of the last almost six years, Henry has endured over half a dozen surgeries and multiple extended ICU stays that included a five-week stint for pneumonia, Entero-68 virus, and rhino virus all at the same time.  By the time he turned one year old, he had spent over 10% of his life in a hospital. He actually had his first, second, and third birthdays in the hospital. This incredibly strong boy has gone into respiratory arrest on several occasions, two of which have required CPR in order to restore him.  He has participated in occupational, physical, speech, and feeding therapy for years in order to strengthen his body and increase his quality of life. At one time, he was involved in eight therapy sessions, over four days, every week.  

Henry is the consummate fighter with a positive attitude that can only be attributed to his love for Jesus and trust in Him.  He brings such joy to the world that it is often difficult to believe that he is only five years old. Most recently, he has been fighting for his health during another bout against pneumonia that has placed him in the PICU at Children’s Hospital for three weeks.  During this time, we have been blessed by God with doctors and nurses that saw through the original arthrogryposis diagnosis of his NICU stay. We are in the process of waiting for the results of some extensive genetic testing that may lead the doctors to a new diagnosis that will allow Henry to receive the correct treatment.  In the meantime, he has been placed on a drug that we are praying will allow his nerves to talk to his muscles more adequately and increase his strength. But even with that, there are mounting ICU bills and the prospect of multiple trips to the Mayo Clinic in Rochester, MN where the expert in the field of neuromuscular syndromes is located.  This will lead to additional time away from family, especially his sisters whom he loves dearly. We will be attempting to balance his care with his time in kindergarten in an effort to ensure he keeps up with his schoolwork, which he also loves and thrives on.

We have been very fortunate to have friends and family pour blessings on us, offering prayers and dinners to Courtney and our girls as she balances her work hours with managing the girls and their schedules at home.  All the while Toby stays with Henry full time to manage his care and ensure his safety. Unfortunately, even in the ICU Henry poses challenges to the nursing staff that require someone to be in the room with him at all times.  
We feel extremely blessed by God, even in the midst of this storm, that Henry is still with us.  Not only that, but in the middle of a time of suffering, doctors have given him an opportunity for hope with new treatments and medicines to manage his muscle weakness.  The fact that the Lord has intervened in our lives to offer us confidence in the future reinforces our trust and love for Jesus, our Savior. We pray that all can gain a greater sense of trust and knowledge of God’s undying love for us, even through the suffering of our son Henry.  Please don’t let his pain be in vain. Let God work through Henry to increase your trust in God, through whom all things flow. God bless you all.

The Frost’s – Toby, Courtney, Shaylie, Jaclynn, and Henry
 

Louise and Don Lockman

2019-11-18 00:49:36

In honor of our Great Nephew “Henry Frost” We love you!

Brandon, Jackie, Jacob, Cooper, Hazel, and Stockton Nelson

2019-11-15 19:00:46

Many thoughts and prayers to you all. The Nelson's

Aston Hunter

2019-11-15 16:51:59

Thinking about and praying for Henry each day!

Josie

2019-11-13 04:35:28

Love and prayers to you and your lovely family

Tracy Hanzek

2019-11-12 18:34:30

You are in our prayers!

Jipps

2019-11-12 18:15:40

Praying for all of you. Gayle and Steve jipp

Henry Frost Update
November 22, 2019, 9:30 pm

Good morning friends and family,

It has been a rough week for Henry.  Monday evening he woke up around 9:30 pm and had debilitating stomach pain that led to severe vomiting.  His pain subsided about 45 minutes later, but once again Dad has a significantly greater amount of grey hair as a result.  We immediately began looking back through his test results for something that might lead us to some idea of what could be the culprit.  A previous xray and ultrasound had suspected an enlarged liver, gallstones (yes, gallstones for a 5 year old), and some debris in his bladder.  So the next morning I began setting up appts to get him evaluated and Wednesday he had five separate dr. appts.  

Another ultrasound that revealed that he still has 'sludge' in his gallbladder, but no stones that they believe could cause bile duct blockage.  A chest xray to rule out any return or advancement of previous pneumonia which showed the same as upon discharge (this is no surprise as severe as his pneumonia was, it will take months for his lungs to recover).  A scope of his vocal cords to ensure there were no lesions and they were closing appropriately to avoid aspiration, they looked great.  An orthodontist stop to check his palette separator (which for those that don't know has been in for about 6 months and slowly expanding his upper palette until it breaks to make for more room in his mouth) and to address the teeth that were knocked out during intibation.  All was good there, no issues.  And finally, a trip to his feeding specialist to see how he's doing with his chewing after having not eaten for over 3 weeks and he was at baseline already from before hospitalization, so that is awesome.

The Drs. believe that he did have a larger gallstone that was passed on Monday causing the pain and severe vomiting.  However, do not believe there are any more that will cause issue.  All in all, after the scary start to the week and mentally exhausting day of appts., he has done well since then.  We will start working on school work that has been sent home for him and continue PT and OT next week with the anticipation that he may try half days of school in a week and return to school in two weeks.  Until then we continue to wait for genetic testing results to return, which will determine our timeframe that we will travel to visit the Mayo Clinic.

In respect of everyone's inboxes, this will be the last update I send out unless it hits the fan.  We have received so much incredible support it's amazing.  God is good!  I have been told by quite a few people that my writing has helped them in some way so after some prodding from Courtney, I have created a website where I am going to try to begin blogging/writing.  If you are interested, please stop by my website below or facebook page and join to continue to see updates.  Thank you all so very much for everything.

I can do all things through Christ who gives me strength. (Philippians 4:13)

www.humblethoughts.com

https://www.facebook.com/Humble-Thoughts-of-a-Sinful-Wretch-112524393546884/

Read Latest Update

Campaign Creator Avatar
Campaign Created by:
Tracy Rheault LaVista, NE Follow

$680 of $5,000

14 % Complete 11 donation(s)
54 day(s) left
13

Recent Donations

$100

Louise and Don Lockman

19 days ago

In honor of our Great Nephew “Henry Frost” We love you!

$25

Adalynn King

20 days ago


$50

Brandon, Jackie, Jacob, Cooper, Hazel, and Stockton Nelson

21 days ago

Many thoughts and prayers to you all. The Nelson's

$100

Elliot

21 days ago


$50

Aston Hunter

21 days ago

Thinking about and praying for Henry each day!

$15

Josie

24 days ago

Love and prayers to you and your lovely family

$100

Melissa

24 days ago


$100

Kara

24 days ago


$30

Tracy Hanzek

24 days ago

You are in our prayers!

$10

Jipps

24 days ago

Praying for all of you. Gayle and Steve jipp

$100

Carin Borg

25 days ago



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