Heavyhearted for Our Boy

My mama is currently driving Josiah around town so that I can quickly write this update. I do not know where to begin. In my last post, I mentioned that Josiah had been very off the past few days and that he had been self-injurious. After sharing that post, things got dramatically worse for our boy. His self-injury has reached an all time high. He has been having 40-50 episodes each day. Every few minutes, he is beating his head with his hands or beating the back of his head against the floor. He has required 2 on 1 care at all times. And all the things that typically calm him are not working.

A few days ago, it became very clear that he was in pain and that something was medically wrong. Josiah is non-verbal so he cannot tell us what is hurting him. And so we are left to guess. I shared our concerns on Facebook, and I asked everyone to pray for wisdom. We have been suspicious of Josiah having lower gastrointestinal issues for some time. He has been seen by a GI doctor at least twice. But they have always said that they believed he had some constipation issues and nothing else. That night I did a very specific google search for "GI issues in non-verbal severely autistic children." There is typically very little information describing how medical issues present for non-verbal kids. I found a link to an Autism Speaks video that was very interesting. It didn't confirm anything for me, but it did peak my interest even more. And I began wondering if Josiah's troubles were more upper GI related. I then noticed a video in the search results that was over 30 minutes long. Josiah started waking up so I had to lay down with him and make a mental note to watch the video Sunday morning. Josiah woke the next morning in terrible pain and he became instantly self-injurious. I cannot begin to describe what it is like to wake to this. It is devastating every single time. I got him ready quickly and we started to ride in the van to calm him. I turned the video on so that I could listen to it while driving. As I listened to this pediatric GI doctor speak, it was like he was telling a story all about Josiah. It was a light bulb moment! This was what was wrong! Jeremy and I listened to the video again after he got home from church, and we then headed to the drug store to hopefully find something that would give Josiah relief. (See video below. I hope it helps another family!)

The next morning our wonderful developmental pediatrician called me and agreed that we may very well have figured this out. He gave Josiah the preliminary diagnosis of GERD (Gastroesophageal reflux disease). "GERD is a chronic digestive disease. It occurs when stomach acid or, occasionally, stomach content, flows back into your esophagus. The reflux irritates the lining of your esophagus and causes GERD." From everything I have read, this can be exceptionally painful. And for a kid with Josiah's severe sensory issues, it is no doubt excruciating. He is miserable. Since starting treatment (which is a story in and of itself for another time - medicating AU kids is challenging to say the least), we have seen some improvement. But he is still in terrible discomfort and his self-injury (while slightly less) has continued. We are being referred to a pediatric GI doctor for an official diagnosis in the near future. 

We are so heavyhearted for what our sweet boy is enduring right now. But we are thankful that God has answered our prayers and is giving us wisdom to figure out what is wrong. PLEASE continue to pray for Josiah. After a week of almost non-stop self injury, we know how desperately he needs this therapy room. Keeping him safe during self-injury is so very hard! He needs the therapy room so that we can maintain his safety and so that he has a quiet place to work through is sensory challenges. The therapy pool will be even more helpful now that we know Josiah is living with the chronic condition of GERD. It will provide his body comfort and calm in a way that nothing else can.

To those who have given to this fundraiser, we cannot thank you enough. To those who are heavyhearted for our boy and want to help, this is the perfect thing that you can do. We long to ease his pain and to comfort him. And we feel confident that God is using this fundraiser to provide a way for us to do just that. 

Thank you for praying for our sweet boy! And thank you for giving to help change his life for the better! 

Because of His Sustaining Grace, 

Christy 

PS- Since we did not post a Friday Funding Update due to the Thanksgiving holiday, we are going to share our current total now and then again on this coming Friday. We are currently at $22,322.22. We are so thrilled with the progress that we have made thus far! Please continue to pray for the waiver petition that we will be submitting very soon. This has been slightly delayed due to the holidays and my needing to constantly care for Josiah. 

Self-Injury and Exhaustion 

Isn't this picture precious! These sweet babies of ours asleep. What you can't see is what happened just a few minutes before Josiah finally snuggled down next to his baby brother. In the throws of upset and then hyperactive agitation, he smacked himself in the face repeatedly. And then he laid down on the floor and beat the back of his head over and over again until I was able to muscle him up and restrain him. It is an excruciating experience! For him and for us.

My body is reminding me tonight of how hard this past weekend was. I ache all over from wrestling Josiah again and again trying to stop him from hurting himself. Our final count on Saturday was 18 episodes of self-injury. You may be wondering what constitutes an episode. An episode is a "meltdown" from start to finish that involves self-injury. It counts as one episode no matter if it lasts seconds or several minutes. In the best case scenario, it only involves very hard open hand smacking of the face. In the worst case, it involves beating the back of his head against the floor or putting the back of his head through windows and walls.

We are SO thankful for the support of my parents and our care staff. Without their help, the hardest days would be unbearable.

Please pray for us as we try to finish our petition for further home modifications through Josiah's waiver. These modifications are in addition to what we are fundraising for. We are so close to having all of the paperwork completed, but there is still one major hurdle we are trying to work through. Some of the things we are petitioning for are shatter proof windows, padded walls, and padded flooring. These things will help us maintain Josiah's safety during meltdowns. We are also asking the waiver to fund a bathroom for Josiah's therapy room so that we can manage his sensory needs at night with the shower and so that we can manage his incontinence. As I have explained to many people, Josiah's medical and behavioral issues work like a big circle of dysfunction. There are many catylists for why Josiah is self-injurious. Some are insomnia, communication frustrations from being non-verbal, pain, etc. For example, his Autism and brain damage cause insomnia which worsens his sensory issues which worsens his self-injury and aggression which worsens his insomnia. On and On! We are praying that this room will help us manage ALL of these issues. And we pray that, once these issues are better controlled, we will see improvements in all areas of his life at home. school, and in the community. We know this therapy room isn't a "cure" for Josiah's severe needs, but we believe it will help tremendously! Your prayers are so appreciated!

Would you consider partnering with us to build this therapy room and therapy pool for Josiah? We have come so far in terms of our funding, but we still have a good way to go. People are always asking us what they can do to help. This is it! It doesn't matter how much you have to offer. Every dollar counts, and we are grateful for every donation no matter how large or small!

On the darkest days when we are struggling to hold on, we still KNOW that God is in control! He has a plan! He is faithful!

Because of His Amazing Grace,
Christy

Friday Funding Update:
November 18, 2016

We serve a gracious God! If you had told me when we began this fundraiser that, in just six weeks, we would be over one-third of the way toward reaching our goal of $60,000, I don't know that I would have believed you! I am AMAZED by God's faithfulness, and I am so encouraged by the love and support of our family and friends and even complete strangers! My heart is overflowing with such excitement for all that this means for Josiah!

Yes! I said over one-third! As of yesterday, we are officially at $20,222.32! I tend to use too many exclamation points when I write, but this post deserves A LOT!!!!!!!!

So as not to bog down our church secretary too much, I am getting a list of the people who have given just three times during the fundraiser. So that will be at the $20,000, $40,000, and $60,000 markers. It is important to me that we express our gratitude to everyone who has helped us make this happen for Josiah. Your "thank yous" are coming! And, for those who are concerned, I only get a print out of the names who have given. I do not know amounts. I got the first list of givers yesterday, and I was so emotional reading the names! Your love and concern for Josiah and our family has been like a huge hug from Jesus! We will never be able to thank you enough!

A few quick reminders:

Claudette and Jenni are hosting a LuLaRoe clothing fundraiser for Josiah! You can check them out at www.lularoe.com. So Comfy!!! The event is this Saturday November 19th from 10 am-12pm at 320 Doggett Dr, Graham. Everyone is invited!!!

Jennifer's 31 fundraiser ends on November 21st. Get your orders in soon! These bags make great Christmas gifts! Jennifer is donating her 25% commission to Josiah's fundraiser! Order online here:
https://www.facebook.com/events/207311006373819/

Darla's Norwex party ends December 10th. If you haven't tried Norwex, you should! Its a fabulous product! Norwex would make a great Christmas gift as well! Darla is donating her 35% commission to Josiah's fundraiser! You can shop and place orders here:
https://www.facebook.com/events/1199334796799934/ 

We would love for you to check out these fundraisers for Josiah, and perhaps consider hosting one yourself! God used Kathy's estate sale to bring in over $4200! He used Crystal's cupcake sale to bring in over $1100! And He used our profit share event at All That Jas to bring in $300! That is close to $6,000 for Josiah in just three fundraising events! Thank you to these ladies once again!!! 

We can't wait to get started on Josiah's therapy room! And we are well on our way to raising the funds needed for his therapy pool! It will be life changing for him! This is a video of our boy in the tub early this morning! He is a water baby for sure!

Because of His Grace!

Christy

What Are You Going To DO?

It's the question people wonder. It's the question many people ask. And its not just them. We work with A LOT of professionals in the field of special needs. They see how severe Josiah's disorder is. They know that he will just continue to get bigger and stronger and faster. And they too wonder what we will do. 

Riding in the van and very sleepy!

Have you heard the quote, "I don't know what the future holds, but I know who holds the future." It sounds "cutsie," but the point it's making is exactly what I believe. Jesus has been so very faithful to our family! He has kept His promises to us. We trust in Him, and He directs our paths (Proverbs 3:5-7). BUT, let me be clear, He has not promised that the path will be easy. He has not promised that we will have all the answers. And so we pray and we work. We pray that Jesus will continue to sustain us. We pray that He will give us wisdom to make the best decisions for Josiah.

And we WORK! We work very hard to think and prepare three steps ahead. We think about what Josiah's needs are currently and what they will potentially be down the road. Our hope, our goal, and our life's work is to keep Josiah in our home and with our family for the rest of his life. 

This fundraiser is helping us accomplish that mission. Josiah currently needs this therapy room and therapy pool, but he will continue to need it especially as he gets older. By supporting Josiah through this fundraiser, you are helping us keep him in our home. You are helping us meet his safety and sensory needs. And you are helping us feel even more hopeful that we will be able to do this in the future. Jesus is faithfully providing the help we need to accomplish this for Josiah. And He is providing that help through all of you! 

We can't praise Him enough. And we can't thank you enough for helping us make this happen for Josiah!

Because of His Amazing Grace,

Christy 

Friday Funding Update:
November 11, 2016

In just 40 days of fundraising, we have raised $17,056.85! Our hearts are full of gratitude and love to everyone who has given! God is using you to accomplish great things! After a challenging day yesterday, I was watching Josiah fall asleep. All I could think was, "This is going to happen, sweet boy!" He has no idea about this outpouring of love for him, but he will be reaping the benefits very soon. I cannot wait to see how God is going to use this therapy room and therapy pool in his life. We are so hopeful! And hope is such a precious gift! 

Because of your incredible generosity, we now have enough funds to complete Phase 1 of our project! We are in the planning phase now!!! It is so exciting to not just dream about the possibilities, but to actually be planning. 

After starting our fundraiser, we were informed about a service through Josiah's waiver that we could petition for. This service would greatly enhance our plans for his therapy room if we are approved. It takes a tremendous amount of work to petition for services, but it is so important that we try. Because we are submitting this petition, construction will not begin on the carport for another couple months. But this delay will be worth it for the potential long term benefits to Josiah. We need your prayers! This petition feels like a long shot at times, but we know that God is able to have this approved. And we are trusting His plan no matter what! It is a comfort to know that the therapy room is GOING to happen because of your generosity. This petition may just add some serious "bells and whistles" that would be a tremendous help in caring for Josiah and in keeping him safe. Please pray for us as we complete the tedious task of submitting all of the paperwork. 

I cannot believe how far we have come! We know that, with God's help and your efforts, we can reach our goal of $60,000! Please continue to share our story with others, and ask them to consider giving to help Josiah! 

Because of HIS GREAT GRACE,

Christy

Time Change 

My Mama has often said, "The person who created time change obviously didn't have special needs children!" I couldn't agree more. Time change was always something I enjoyed. Do you remember when you were a kid and your teacher would move all the desks in class? Time change always gave me that same feeling of excitement and newness. I felt this way even after Olivia and Jack were born. But then I became a special needs mother and realized how horribly time change affects these kids. I will say that so far Josiah has done better this year than he has in the past, but we all agreed yesterday that the change is catching up to him. He spent from 12:30-7:00pm riding in the van with just a few pit-stops back at the house that only lasted a couple of minutes before he needed to go again. And he was so sad! 

This is a precious picture of Josiah watching his Papa's
soccer team compete at the state championship.

Jeremy and I agreed that we would not post pictures of Josiah on the blog when he is exceptionally upset or pictures of the damage he has done to himself after episodes of self injury. We want to share his story, but still protect him by not sharing too much. But, suffice it to say, these times of sadness and self-injury break our hearts and leave us longing to find a way to help our son. And that is why we are doing this fundraiser. It's why we are pleading for your help. Having a therapy room and therapy pool for Josiah to access whenever he needs to will make a tangible difference in Josiah's life. It will help us comfort him better in times of sadness, and it will help us prevent episodes of self-injury by giving him the environment that has proven to be most calming for him. 

We cannot thank those who have given enough! We have been encouraged so much by the progress that we have seen so far! We have a ways to go to get to our goal of $60,000, but we believe we will get there. We are making progress not only by the individual gifts that have been given, but by several fundraisers and profit shares that friends have hosted for Josiah. Every gift and every fundraiser counts!!!! We have had friends host an estate/yard sale, a bake sale of Crystal's Cupcakes, and a profit share event at All That Jas. We have several fundraisers going right now, and we have several more to come. 

Our friend Darla is hosting a Norwex profit share event for us. Norwex is a fabulous product! You can place an order online, and 35% of the profits will go to Josiah's fund. Check out the Norwex products and place your order by following this link:
https://www.facebook.com/events/1199334796799934/ 

My college friend Jennifer is hosting a 31 profit share party for us. We love 31 bags! You can place an online order here, and 25% of the profits will got to Josiah's fund. 

https://www.mythirtyone.com/…/shop/Party/EventDetail/9571466 

Thank you again to everyone who has given to help Josiah and our family. God is using you to encourage our family in a tremendous way!

Forever grateful,

Christy 


*Important Update: When you give online via PayPal, you follow this link (http://www.beaconbaptist.com/donate/) to our church website. The church has graciously added a tab under the "designation" section that now says "Verroi Fundraiser." We hope this will make giving a little less confusing. :)

Friday Funding Update:
November 4, 2016

Josiah with his infamous string hanging from his mouth. :)

I would have never imagined that one month into our fundraising, we would be at $10,181.85! And this doesn't include a pending donation from our friend Kathy's estate/yard sale that she hosted for us this past weekend. We are so close to being able to complete phase one of our project!!!! And it couldn't come at a better time. Josiah has been very up and down this week. He has had periods of tremendous peace, calm, and joy that have very quickly turned to episodes of heartbreaking sadness and self-injury. The upcoming time change has historically thrown him off for weeks to even months. So we may be gearing up for an even harder season. We are praying this isn't the case, but it is just another reason why this project is so important for Josiah. Completing the therapy room phase of our project will provide a quiet place for Josiah to get proper sensory input via his therapy swings and various equipment designed to help kids with Sensory Processing Disorder. Once we finish the therapy room, we will be working hard to raise the funds necessary to complete the therapy pool! The consistent water input that this pool will afford Josiah, will make a huge impact on calming his sensory needs. 

We are very excited about the upcoming fundraisers that friends are hosting for us. A local company in Elon called All That Jas is having a profit share event for Josiah this Friday and Saturday. 10% of all sales will go to Josiah's fund. You can check out their website here: http://www.allthatjas.com/  Come shop today at 11:00am through tomorrow at 5:30pm! We are so grateful to Josiah's support staff member Nicole for setting this up, and to All That Jas for being so generous! We can't wait!


Our friend Crystal is a professional baker, and she is hosting a cupcake sale for people who live locally. She makes the most amazing cupcakes. Place your order by November 7, 2016 by emailing Crystal at 
crystalnguthrie@yahoo.com. Here is a list of the types of cupcakes and prices (worth every penny):
Yellow Cake with Almond Buttercream or Chocolate Buttercream
Chocolate Cake with Almond Buttercream or Chocolate Buttercream
$25/ Dozen
$15/ Half Dozen
Red Velvet Cake with Whipped Icing
Carrot Cake with Cream Cheese Icing
$35/ Dozen
$20/ Half Dozen
You have got to try Crystal's Cupcakes!

We have several other fundraisers in the works: a pool party at the aquatics center, profit shares from a Norwex and a LuLaRoe party, and a few other events people are looking into for us. Perhaps you have an idea for a fundraising event you could host for Josiah! With each fundraiser and each donation, we get one step closer to reaching our goal of $60,000 and changing Josiah's life for the better. Please consider partnering with us! 

Thank you to everyone who has given so far. We are forever grateful to each of you for investing in the life of our son!

Because of His Grace,

Christy 

Josiah on one of his many rides with his support staff member Shinika

Sensory Issues and Five Ninja Brothers

Holidays are particularly hard for kids who have Sensory Processing Disorder. SPD is very common in kids who have Autism, and Josiah's sensory issues are very severe and complex. Celebrating Fall and Halloween with festivals and Trick or Treating is almost impossible, but we try. We try to help Josiah manage his sensory needs and we try to never push him to the point where he becomes self injurious. But we feel it is important to try our best to include him whenever possible. 

This year our boys dressed like Ninjas! Jalen and Jason seemed especially excited about matching. Judah thought Jason was adorable, and Jack was such a good sport and happily dressed like his younger brothers. He said, "They love matching me so I figured it was ok." So I snipped the ribbons off of a pair of ninja pants and put them and a silky black shirt on Josiah, and, with that, we had our fifth Ninja. You can tell by the pictures that it is so very hard for Josiah to gather himself in order to be included. But he tried hard. And his brothers were very still and quiet so that we could snap a few pictures. 

Jo didn't go to any doors for candy, but his sister Olivia graciously took his bag to each door. And Jo rode in a wheelchair that my parents have for him. He finds comfort and security sitting in his wheelchair and stroller, and it is much safer to have him contained when in public due to his risk of flight or running away. Josiah made it almost the entire way with our family, but became too overwhelmed near the end. So Meemaw took him back to the house quickly. 

Josiah with some of his cousins. :)

It's been a challenging few weeks, and it was nice to have a good night overall! 

I don't know how to sufficiently thank everyone who is helping us change Josiah's life for the better. This therapy room and therapy pool will help us much more effectively treat Josiah's sensory issues. The outpouring of love and financial support has been more encouraging and uplifting than I can possible convey! If you haven't taken the time to read Josiah's story, please do. He is a precious gift to our family, and we know that God is using his life to bring about His good will and purposes. Please consider helping us accomplish this goal for Josiah! Our goal of $60,000 is huge, but God is proving Himself faithful to accomplish this, and He is using so many of you to help our sweet boy! 

Please share our story, follow our website for updates, like our Facebook page, and give. 

Forever grateful!

Christy

Josiah's Cousin Joel and Brother Jason