Aiden Kemp's Journey Continues

Yay we made it!!! They have taken possession of the new/used wheelchair van and had just a small amount remaining amount due to the seller. We thank all of you who have supported this effort and helped raise the funds for the van. Grandpa Hultquist did some modifications to Aiden's wheelchair connections so that everything works great.  And Aiden's journey continues!!!  Your continued support helps  to provide the necessary equipment and supplies for Aiden.

DONE!!!! We are reaching out to our amazing community of Aiden supporters to share a rather urgent need to raise funds for a wheelchair accessible van.

Aiden had a full spinal fusion on February 24, 2017 in Seattle. Unfortunately he developed some post surgical complications which have left us with the urgent need to get Aiden a wheelchair van.

It has now been two months and getting Aiden in and out of the family car has been an extreme struggle. We have found a van and have had several fundraisers and can't quite make the total needed. We need about $6500 more!

This van will become Aiden's vehicle when he starts driving in the next couple of years. We will be buying with this in mind and hope to have it set up to use hand controls when the time comes. These vans are crazy expensive and due to the urgency of this situation we are mobilizing his GoFundMe and social media to make this happen.

We have been so grateful for the tremendous support over the last 3 years and please know how critically important your words of encouragement and financial gifts have been. Thank you. Thank you for lifting us up and making this crazy journey bearable.

For daily updates and progress you can follow Aiden's story on Facebook at "Aiden's Battle with TM."

This is more on Aiden’s Journey with TM (Transverse Myelitis). It is one filled with every twist and turn that you can imagine. This GoFundMe account is being set up to help pay the medical expenses that are not covered by insurance and the ongoing fight to seek out alternative treatments to aide in Aiden’s recovery and quality of life. Below is the story of where this journey began on Mother’s Day 2014. As I wrestled with what to share of all the posts from his original GoFundMe campaign; and re-read each and every one of them from start to finish; I realized how far he has come from that fateful night. Yet his journey will continue for as long as God’s plan is at work. We all have shed rivers of tears, expressed much sorrow for what has been lost, and marvel that this Child of God has more courage, bravery, faith, hope, and determination than most of us will have in a lifetime, in just a year and a half. I will only be posting the last few posts from Danielle when we revived Aiden’s GoFundMe as to where he is now after this period of time. Below you can read where he started this journey…….

This is what happened to our grandson Aiden from his mom Danielle in the beginning:

Aiden got sick with what we thought was just a cold or flu. The first 3 days were excruciating headaches, followed by random fevers and a cough. Following the first week I began chatting with our nurse practitioner because it was lingering and we had been warned to watch for pneumonia. His lungs were clear, and all was just about the same until the evening of Mother’s Day. Grandma Hultquist treated us to lunch we had a blast skipping rocks on Lake Coeur d’Alene. On the drive home, Aiden complained his back hurt. He was really whiny through the evening and kept asking, “Mommy, hit my back! Please hit my back!” He was complaining of pain on both sides in the kidney area. We assumed dehydration and kidney problems, and pushed the fluids and gave him cranberry capsules. He was well hydrated, and we sent him to bed.

At 3:30 am we woke up to him screaming, “MOM, I can’t move my legs! I can’t move my legs!” He woke to use the bathroom and tried to move… he couldn’t. He had lost control of his bladder as the paralysis had moved up. He could feel pressure on his legs but nothing more. We dressed him and moved him to the couch while he screamed in pain. His legs did not move, his head started pounding... The pain was so extreme he threw up in the car on the way to Sacred Heart. His hands and arms were shaking and trembling. He would beg “Mommy, push on my forehead. No, stop. Push mommy. Stop!” We got checked in, and as time progressed and blood work was collected, and diagnosis began, the paralysis moved up his tummy. By the time they got him back from the MRI and settled in the PICU it was at his nipple line. He had them all baffled. Cases of Transverse Myelitis are rare and it took almost 12 hours for a diagnosis. We are praising the Lord they started high high doses of steroids and it stopped progressing!!!!

What is Transverse Myelitis??
Transverse Myelitis is a neurological disorder caused by inflammation of the spinal cord. You are welcome to look up the longer definition, but in layman’s terms: swelling in the spine can destroy myelin which is the fatty insulating substance that covers the nerves. It causes scars that block the nerves from communicating with the rest of the body. In Aiden it caused the spinal cord to swell from the bottom moving all the way up to between his shoulder blades. Aiden is paralyzed from the nipple line down. We are blessed he has the use of his hands and a good clear mind… it could have been much worse.

Now What??
Aiden’s diaphragm is now too weak due to the paralysis to breathe on his own. He is on a ventilator indefinitely. The first surgery went well and accomplished the goal of making life easier to live. Instead of having tubes in his mouth, and requiring him to remain sedated, he now has a trach (tracheostomy) which is where the ventilator is now attached. He also has a feeding tube and port to administer the plasma treatments and additional procedures. There is hope that he will learn how to push air up through his vocal cords with time! I think we are all eager to hear his voice again. Our hope is that he will continue to gain strength and be able to swallow stronger so we can fulfill his wish to drink WATER.

Friends and Family;
We need you all to know that it is a SLOW recovery. We are talking a 1 year at BEST case scenario. And there is a chance there will be no recovery. That life will change permanently for him. That is the great unknown in this story.

The treatment plan was as follows:
Steroids: High, high doses to reduce the inflammation in the spinal cord. So far, there is not enough improvement so they are adding the next treatment.
DONE
Plasmapheresis: They remove the blood and as it goes into the machine it removes his “bad” plasma and they return the blood and add in new “clean” plasma… think of it like cleaning the blood. The treatments are every 48 hrs, and he will have 6 treatments. We are praying we are going to see some pretty good improvements as these treatments progress.
DONE
Chemotherapy: We are still not seeing a vast improvement, next up is to add a one-time dose of chemo to kill his immune system. You see, this is an auto-immune response within the body. The body freaks out and starts attacking itself rather than the virus. Chemo starts today.
DONE

Now, there comes a point where we can do no more. Then life is as we have it now and we head into therapy and make adjustments. This is going to be A LOT of hard work. There will be frustrations on his end (as you can possibly imagine) and for his parents.

As one set of his grandparents we are acutely aware of the stress that this horrible disease puts on everyone both mentally and physically, but we all persevere with our faith and the support and prayers of everyone. The additional stress of financial burden is one that no one wants to talk about.

This is where our Aiden is today after weeks, months and yes almost two years of life and death struggles, many tears and prayers, and a lot of unknown outcomes. He is without a doubt the most amazing child of God, anchored in faith, optimistic and with the most joyful spirit. He has taught all of us great lessons of what it is to truly be brave in the face of the unknown. God has great plans for this young man and we all remain in awe of his great power. Aiden is truly an inspiration.

Aiden remains paralyzed from the nipple line down and he is in a wheelchair. He has moved forward in life learning and coping with all of the changes as they come. His parents though unearthed at times with the changes in Aiden’s health remain steadfast in their faith and their conviction to seek every medical and alternative treatment that will help Aiden’s chance for recovery and quality of life.

Here is a conversation from earlier when Aiden was still in Sacred Hearts Children’s Hospital PICU:

Aiden said tonight, "I wonder how many people are praying for me." I wish we knew, but my guess is it would blow our minds. He talks so candidly with his sister about life. She said something about him walking again, but he matter of factly said, "I may not walk again..." and their conversation continued on. Following the phone call with Annika, he said, "You know what mom? I still think I'm going to walk again."

HOPE.

It is pivotal part of being human, the very nature that calls us to look to the Savior.

Where does my hope come from?
My hope comes from You, MAKER of heaven and earth...