Walker's Pacing Journey

$9,950 of $20,000 goal

Raised by 110 people in 58 months

2346775_1438286191.8775_funddescription.
2346775_1438286152.7504_funddescription.Walker has CCHS which causes him to stop breathing when he goes to sleep and his breathing is sometimes affected while he is awake. To help him with this he has a trach so that he can be hooked up to a ventilator every time he goes to sleep. He is ready to be free of his trach, in order to get rid of it he must have another way to be ventilated at night. The best way for this to happen and the best thing for his quality of life is to have Diaphragmatic Pacers implanted. His trach has always been a part of him and is all he's ever known, but he is ready to be more independent and wants to be more like everybody else. To get this done we will have to travel to UCLA Children's Hospital. It is going be a long process for our family  and will require at least 4 trips to LA and we need all of the support we can get. Walker needs the support. Please help us raise money for him to make his dream come true. To learn more about his disorder click here   www.cchsnetwork.org

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Just wanted to update you all on our progress. We have what we hope to be our final trip planned to go back to CHLA. The plan will be to take out his trach if all his tests look good. We will be gone for roughly 3 weeks depending on how things go. Walker is excited and we are excited for him, after all this was the goal. But mommy is having quite a bit of anxiety thinking about not having his trach there anymore, but I know it's best for him in the long run. Please keep him in your prayers that all goes well and he tolerates it well, also for safe travels for our family. I will update again soon. Thank you all!
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Happy New Year! I haven't updated in a while, I apologize. We have been busy, busy, busy. We have been doing great. Walker is pacing all night long now, it has been tough getting to this point. Lots of trial and error and sleepless nights. This whole pacing thing has not been easy, but it has gotten much easier recently. He loves it and other than he can't always sleep in the position he wants to, he is adjusting well.
He is looking forward to having his trach removed this year (hopefully sometime in the Spring we will return to CHLA for this)! While he is very excited, mommy and daddy are terrified! It will be bittersweet. I want him to move forward for sure, but it is going to be scary. It has ALWAYS been there and if something happens he can be easily vented. But we will adjust like we always have.
We hope you all had a great 2016 and pray that you will have an even better 2017! God bless you all and thank you for your support through our journey.

#nakedneck2017
Walker sleeping with no vent, just pacers and his monitors.
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We are on our way back to California to go have Walker's pacers turned on for the first time! Praying he tolerates it well and that all goes good. We will be admitted the 8th, 9th and 10th. Please keep praying for him and wear your shirts for support if you have one. Thank you All! I will update again soon.
#paceWalker
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Sorry I haven't updated in 8 days. Walker is doing great with his recovery. He is having very little pain, usually none at all. Taking ibuprofen during the day and some prescription pain medicine at night. I took his chest tube dressings off Thursday night and they have healed very nicely. We told him he is gonna have to come up with one heck of a story to tell the girls about his scars. He had previously said a bear attack, we will see if he comes up with anything else...lol. Thank you for all of the support and prayers. We appreciate it all so much!
Brothers
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Read a Previous Update
Kim Steuber
44 months ago
1
1

While I haven't seen the Day family in a long time, I will never forget meeting them and caring for Walker in the NICU. I was the nurse who discharged him and vividly remember carrying him to the car patting his bottom so he wouldn't fall asleep and stop breathing. I had the opportunity to visit in their home where Amy and Josh had everything Ealker could need. Amazing family. Getting Ealker this surgery would be a dream come true.

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Melody Day
48 months ago
1
1

This is our oldest grandson. He has been waiting for this surgery all his life. Life with the trach and being on a ventilator every night has been all he's known. Carrying all kinds of equipment, oxygen, go bag (to bag him if he quits breathing), having a nurse that goes to school with him (to suction him and to notice when he has periods when he starts to breathe inadequately and starts to get bluish)... it would be a whole different world for this very loving boy. This family has been through a lot from the day of his birth. He spent the first four months of his life in the hospital. Then they came home complete with nursing care (a young couple with their first child). Their home has never known the normal most of us take for granted. Listening for beeps and alarms has been their normal. They have been awesome parents taking the best possible care of him and his two younger brothers and staying strong as a couple. Please help them to raise the money they so desperately need to finance this surgery and the many cross country trips it will take to make it happen. Walker and his family deserve this opportunity for normalcy. Thank you!

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Mary Gladfelter
37 months ago

Walker, you've got this! You are one of the sweetest boy I have ever met. You and your family are in my prayers.

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$9,950 of $20,000 goal

Raised by 110 people in 58 months
Created October 10, 2014
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GS
$100
Gale Stewart
26 months ago
TT
$30
Tricia Thorpe
26 months ago
GP
$100
Gary Pearson
26 months ago
$50
Anonymous
37 months ago
$100
Christine Marston
37 months ago
RG
$50
Raj Gill
37 months ago

Good Luck!! --Dr. Gill

EL
$100
Erica Lawal
37 months ago

Go Walker. What a brave young man!! A superhero

MH
$20
Michelle Hayes
37 months ago
KB
$20
Krysten Bishop
38 months ago

Hoping for a speedy recovery!

RP
$25
Robert Paterno
38 months ago
Kim Steuber
44 months ago
1
1

While I haven't seen the Day family in a long time, I will never forget meeting them and caring for Walker in the NICU. I was the nurse who discharged him and vividly remember carrying him to the car patting his bottom so he wouldn't fall asleep and stop breathing. I had the opportunity to visit in their home where Amy and Josh had everything Ealker could need. Amazing family. Getting Ealker this surgery would be a dream come true.

+ Read More
Melody Day
48 months ago
1
1

This is our oldest grandson. He has been waiting for this surgery all his life. Life with the trach and being on a ventilator every night has been all he's known. Carrying all kinds of equipment, oxygen, go bag (to bag him if he quits breathing), having a nurse that goes to school with him (to suction him and to notice when he has periods when he starts to breathe inadequately and starts to get bluish)... it would be a whole different world for this very loving boy. This family has been through a lot from the day of his birth. He spent the first four months of his life in the hospital. Then they came home complete with nursing care (a young couple with their first child). Their home has never known the normal most of us take for granted. Listening for beeps and alarms has been their normal. They have been awesome parents taking the best possible care of him and his two younger brothers and staying strong as a couple. Please help them to raise the money they so desperately need to finance this surgery and the many cross country trips it will take to make it happen. Walker and his family deserve this opportunity for normalcy. Thank you!

+ Read More
Mary Gladfelter
37 months ago

Walker, you've got this! You are one of the sweetest boy I have ever met. You and your family are in my prayers.

+ Read More
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