Friday, December 30, 2016

Friday "Friend" Update

Our wonderful church secretary is on vacation this week so I will not be able to give a funding update until the beginning of next week. I have really been wanting to find an opportunity to share with you about some dear friends of ours, and this seems like the perfect time.


Our friends Ryan and Sara are going through a very difficult trial right now. I'm hoping that by sharing their story this will further help them meet their needs.


I grew up with Ryan at our church Beacon Baptist, and our parents taught together at the Christian school where we attended. Ryan's mom was one of the best teachers I ever had. God brought Ryan and Sara together in such a precious way, and they were married in 2012. In 2015, Sara gave birth to their sweet little boy Finley.


In September of this year, Ryan and Sara found out they were expecting their baby girl who is due in May 2017. Very shortly after finding out that they would be blessed with this little one, Ryan was diagnosed with Stage III cancer that had already spread to his liver. Ryan and Sara have been such an encouragement to everyone around them. Their faith through this unimaginable trial has been a shining example to everyone they know. Ryan has had surgery, and he just finished going through chemotherapy treatments. Our prayer is that these treatments will be all that he needs for complete healing, but I know this is dependent on how further testing turns out. Because his cancer is aggressive and it has had very ill effects on his liver, he had to undergo inpatient chemo treatments. He had to be hospitalized for 5 days during each treatment, and this escalated the associated costs dramatically. He has insurance, but his plan has a super high deductible per person.
Ryan is the kind of guy to never ask for help. He has continued to work as much as possible through all of this. He never complains, and, when asked "how are you doing," he very often replies "I could be worse."


I know it may seem like an odd thing to share another family's fundraiser on this fundraising site we creating for Josiah. But so many of you have been the "hands and feet" of Jesus in our lives. We know your efforts to help Josiah come from a place of love for others. And, for many of you, your efforts come from a love of God. I wanted to share Ryan and Sara's story so that you could help us by praying for them and perhaps consider giving even a small amount monetarily to help them pay Ryan's medical expenses.
 
You can read more about Ryan and Sara here, and you can also consider contirbuting to their gofndme account:




Thank you all for the loving support you have given our family this year. And thank you for loving others!!


Because of His Amazing Grace,

Christy

Wednesday, December 28, 2016

Christmas

I am thankful for the opportunity to celebrate the birth of Jesus at Christmas! I cannot fathom the love that God the Father had for us. That He would send His only son to be born on this earth, to live a sinless life, and to die in order to pay the price for our sins. Truly Jesus is the greatest gift ever given! Praise His name! 

I am also thankful for the picture of God's sovereignty that is so beautifully displayed in the birth, life, and death of His only son. What a gift to know that Jesus understands our pain and grief, because He suffered more than we can fathom. He knew the Father's will. He knew what He would endure at the cross, and He still submitted to His Father's plan. We do not know what the future holds, but we can trust that God has a plan that will bring Him glory and that will be for our eternal good. 

Our Christmas celebrations had moments of ease and moments of difficulty. Jalen had another seizure on "Christmas Eve Eve," and it was more severe than the previous two. It is a heart wrenching thing to watch him when this happens. Seconds feel like minutes. We took him for an out patient EEG yesterday. What a challenge it was to put him through that testing! It was a reminder to me that Jalen's sensory sensitivities are profound at times. I was so proud of him for doing as well as he did. And he was thrilled with his reward: McDonalds and a trip to LifeWay to spend his Christmas money. We meet with our neurologist soon to discuss what needs to happen moving forward. 

Christmas Eve we headed to my brother and sister-in-law's house to celebrate with our family. My parents have 16 beautiful grandchildren. We are blessed indeed! Josiah loves his family so much, but ALL gatherings tend to be challenging. Sensory Overload! Our support staff worker Shinika, Jeremy, and myself took turns taking Josiah on van rides. He tolerated everything very well considering how hard the past few months have been. There were only a couple of instances of more minor self-injury. It was a great visit overall. I love our family, and I am so VERY thankful that they love and support us where we are at. 


Some of our boys with their boxing gear! 
Christmas Day started at 7am. The kids were so excited to start the day! But Josiah woke very off. We settled everyone on the couch while I called my Dad to come and get him. Jeremy and I calmed Josiah until my Dad arrived. He had settled by the time Dad got there, but was ready to go for a ride within a few minutes. Josiah left and Jeremy and I shared a quick moment of sadness in the kitchen before swiping tears away and rounding the corner to celebrate with the rest of our children. There is a profound sadness about this that is difficult to convey. But the "glass half full" side of this is that Josiah has two of the most selfless grandparents who structure their lives around helping to meet his needs and the needs of our entire family. I could write a book about my parents, but, suffice it to say, I do not know what we would do without them. Josiah returned home after his ride, and he and I stayed home while Jeremy and the kids headed off to church. I could tell he wasn't feeling well. He took a nap while I streamed our church service. Napping is always a clear sign that his body is trying hard to regroup. My Mama fixed us a wonderful lunch, and Dad and I took took turns driving Josiah around. We all drove to visit my friend who is in jail. Our visits always remind me to not take what I have for granted. The rest of Christmas Day was filled with ups and downs, but nothing extremely out of the ordinary. It was a good day overall, and again what a blessing to be with family! 

The past few days Josiah has done ok. He still seems off though. He is swinging in his therapy swing for hours each day with his head covered and he is taking a lot of showers. He has had lowered amounts of self-injury overall, but the self-injurious moments he has had have been severe. He smacked his head very hard twice against the concrete outside yesterday. He has a huge knot of the back of his head that is very tender. We do our very best to protect him, but sometimes it isn't possible to keep him from getting hurt. We just keep trying to comfort him and meet his needs.

Our family has so much to be thankful for this Christmas! One of the things we are grateful for is how God is using all of you to meet Josiah's needs. We know that this therapy room and therapy pool are going to make a significant and potentially life long change in Josiah's life for the better. We cannot thank you enough for helping us!

I pray you all had a wonderful Christmas!

Christy     



Friday, December 23, 2016

Friday Funding Update:
December 23, 2016

$32,357.31!!!!! 
We are over half-way there!!! We started this fundraiser less than three months ago, and we are over half-way to our goal of $60,000!!! We are so amazed by the goodness of God! And we are so exceptionally grateful for your generosity!!! 

Josiah enjoying a toy from
Grandpa and Grandma. 
My sister-in-law Alisha hosted a Holiday Vendor Event for us this past weekend that raised over $4,000 for our fundraiser! We are thankful for all of Aunt Alisha's efforts for Josiah! And we are thankful for all the ladies that helped her and shared their wonderful products! Thank you also for our family and friends who sold raffle tickets for the gun raffle, and thank you to everyone who purchased raffle tickets and supported us at the event! We have SO much to be thankful for! 

Our three sweet nieces Sage, Sydney, and Shayla and our "honorary niece" Cora braved the cold three different times to sale hot chocolate for Josiah at their Uncle Josh's store. These girls were such an encouragement to me! They raised over $700 for their cousin!!! 

God is using our family, friends, and community to meet our needs through these fundraisers! Perhaps you would consider hosting a fundraiser for Josiah in the coming year! 

There is still time to get your order in for Norwex products through our friend Darla! Darla is hosting a Norwex fundraiser for Josiah through December 31st, and she is donating her entire 40% commission to Josiah's fund. Norwex has so many wonderful and natural products to offer! Thank you Darla for your loving support! 
http://darlah.norwex.biz/en_US/customer/party/1858224

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This week has held its challenges. Josiah had several difficult days. Jason had dental surgery. And I had the privileged of supporting a friend yesterday during what was no doubt one of the worst days of her life. It was heart wrenching to see her lose everything because of horrible choices she made during a dark time in her life. I was struck with how precious this life is, and how I should never take a single day for granted. I have to remember that being a mother is a God-given privilege. It isn't a right. Even on the hardest days, I need to remember that God has His purposes in all of it. 

Please pray for us during the upcoming days. Holiday celebrations are often very hard for kids with Autism. The change of schedules and trappings of Christmas are often completely overwhelming to the senses for these kids. I pray Josiah can tolerate being with family, and that we will all enjoy the celebration of Jesus's birth! We serve a wonderful Savior, and we are so very thankful for the blessings He has given us this year! 

Thank you for the part you have played in encouraging us! I pray your Christmas is wonderful! 

Christy  

One of the cutest pictures ever! Jalen and Jason trying on glasses! 


Tuesday, December 20, 2016

Perseverance

This past Sunday was a rough one. Josiah woke, and, per usual, he was ready to go. I drove around the county while Jeremy got the rest of our crew ready for church. Even the slightest noise was agitating him. So I waited for Jeremy and the kids to leave for church before trying to return home. Once we got home, Josiah did as he typically does and headed straight for the shower. Pattern and consistency are our friends, and so we take the same steps to ensure his safety. I removed the razor and soap from the shower. He likes to lick the razor, and he always gets soap in his eyes if it's left in the shower. I removed the shampoo and all the other products, because its so much fun for him to pour them all out. And I made sure the toilet paper was safely tucked away under the sink. I noticed the trash can was full. Since Josiah likes to dig trash from the can, I quickly walked to the kitchen to grab a trash bag. 

30 seconds. I was gone 30 seconds, but that is all it took. Josiah opened the cabinet and got the toilet paper out. He demolished it in the shower, and I returned to find the drain completely clogged and 1.5-2 inches of TP laden water standing in my shower. And, of course, Josiah was standing there covered in bits of wet toilet paper from head to toe. 45 minutes, two towels, two trash bags, two rolls of paper towels, a measuring cup, and a plunger later, the drain was clear again. I then rushed to get ready in time for Sunday School. Since it is the one service I get to attend each week, it is very important to me to make it. I was still concerned about the shower so a decided I needed to take a bath. But how does one accomplish this with no one watching Josiah? In this case, I'm thankful that Josiah has no inhibitions. There is an innocence about him that only ten year olds like him still have. So I locked him in the bathroom with me, and I quickly jumped in the bath.
Josiah snuggled in a blanket at Papa and Meemaw's house
I almost made it. I was probably 2 minutes from finishing when I felt Josiah's cold legs against my back. Yep, he decided a bath with Mom looked like too much fun to resist. I hurriedly finished washing while praying he would not pee on me. We finished our baths, got dressed, and rushed to the van to head for church. We were 5 minutes late, but we made it. 




The above describes about two hours of a day that just continued to grow ever more challenging. It's our normal.

We each have our own normal. No matter what challenges God has brought into your life, all we can do is to continue to trust His plan and do the next thing. I think that is what true godly perseverance is. Trusting God and Doing the next task He has given you to do. Even if that task involves wet toilet paper and clogged drains.





I wanted to share this video. I love it. Chris reminds me of Josiah in many ways.



We would so appreciate it if you would consider helping us reach our fundraising goal. You can make tax deductible donations by giving online here: (http://www.beaconbaptist.com/donate/) or by writing a check addressed to Beacon Baptist Church  1622 Kirkpatrick Road, Burlington, North Carolina 27215 (please write "Josiah Verroi Fund" in the memo line). We are so grateful for your loving support! 

Christy

Friday, December 16, 2016

Friday Funding Update:
December 15, 2016

My last post "What A Day" has now turned into "What A Week!" We have had a gastro appointment, dentist appointment, pre-op appointment, eye-doctor appointment, and a waiver review meeting all this week! AND I completed all of the preparations for our waiver home modifications request. It is right at 30 typed pages long! Please pray that we receive approval! This petition is for additional modifications to the therapy room we raised funds for in Phase 1 of our fundraiser (see "The Project" tab). These are safety measures we are petitioning for primarily to protect Josiah when he is having periods of extreme self-injury. For example, shatterproof windows (he has put his head through five windows to date), padding on the walls (he has put his head through our sheet-rock several times), and padding on the floors (to protect the back of his head when he beats it against the floor). These modifications are very expensive so getting waiver approval for these safety modifications would be a HUGE blessing! We should know their decision by the first or second week in January. Thanks for praying! 

There is nothing like the smell of your
brother's head in the morning!
Josiah is slowly improving in terms of his GERD. We are so thankful! Please continue to pray for him. Josiah is non-verbal, but he often screams in excitement. His throat clearing (due to the reflux) has been so hard that his screams are very horse and, at times, can barely be heard. We are treating him with a reflux medication and a medication that coats the throat and heals any sores caused by the GERD.   



Drum Roll......... $25,272.02!!!! 
In two and a half months, we have raised over $25,000!! AMAZING!!!! We continue to be blown away by the generosity of everyone who has given or raised funds for our boy! Thank you doesn't come close to conveying our gratitude sufficiently!

We have a couple of big reminders for today!

Please consider visiting the Norwex fundraiser page that our friend Darla set up for Josiah. She has graciously extended this fundraiser through December 31st, and she is donating her entire 40% commission to Josiah's fund. Norwex has so many wonderful and natural products to offer! Thank you Darla for your loving support! http://darlah.norwex.biz/en_US/customer/party/1858224


HUGE REMINDER FOR TODAY!!!


My sister-in-law Alisha is hosting her Holiday Vendor Event for Josiah TODAY Friday, December 16th from 5:30-8:30pm at the Diamond Oils Training Center (120 W Main St. Gibsonville, NC 27349). This event will have over 11 vendors from all across North Carolina. A few of the vendors are doTERRA, Thirty One, 4 different LuLaRoe Ladies, Mary Kay, Fosnet Security, Lila Rose, Premier Jewelry, Pampered Chef, Annie's Knit Hats and several local crafters. Each vendor will have a item to give away at the in house drawing at 5:30pm. Please make plans to join them right at 5:30pm so you can be entered to win. They will be doing an ON TIME drawing at 6:00pm, and there will be donation jars all around the center for Josiah. Alisha is also raffling off this gun!!! It is an amazing prize! Raffle tickets are $20 each! You can purchase tickets via PayPal, and you do not have to be present for the raffle. So out of town folks should feel free to participate. We have more raffle tickets available for purchase so don't hesitate to contact us today for yours! This event is open to everyone so please spread the word and invite your Facebook friends and family. For any questions or to buy a raffle ticket please contact Alisha at 336-516-0007. We are praying that God will provide a lot of funding through this event! Please pray with us and join us today if at all possible! You can see the event on Facebook by following this link: 


This week has not only been very busy, but its been filled with its fair share of sadness as well. Mrs. Laura Racke and Mr. Gerald Counts are two precious people who I have had the privilege of knowing and attending church with at Beacon Baptist my entire life. Both of these sweet saints went home to be with the Lord this week. God used Mrs. Racke in my life as a shining example of a faithful and unconditionally loving wife. He used "Uncle" Gerald to teach me lessons about loving others and the joy that comes from sharing the hope we have in Jesus particularly with hurting people. I will miss them both greatly. Heaven grows sweeter. Until that day....

Thank you to everyone who is supporting us in this long season of need. Thank you to those who continue to pray for us, and who realize that this difficult road we are walking will not end until Heaven. God is faithful, and we so appreciate your loving support and prayers!

Because of His GREAT grace,

Christy 

Wednesday, December 14, 2016

What A DAY! 

I try to post updates here on Tuesdays and Fridays, but this update is coming to you on a Wednesday. Because yesterday was so CRAZY! We started our day with the much anticipated gastroenterology appointment for Josiah. It went well. We were able to see the GI doctor who had helped us with Jalen in the past. I had really liked her approach before so I had been very hopeful that she would be able to see Josiah. She was great! She listened to my concerns and agreed that we should continue treatment for GERD, but we decided that Josiah needed some stronger medication than what he has been taking. The plan is to treat him for one month on these new meds. If we do not see a substantial improvement, then we will plan towards having more invasive testing done. I came away relieved and grateful! Please pray with us that these new medications will help. Josiah has improved, but he is still struggling a lot. 


As we were leaving UNC, I got a text from Judah's wonderful teacher saying he had smacked his head on a pole very hard while outside. Talk about a goose egg! Judah was tough, and I thought it was so sweet that Olivia was able to come and comfort him while he was in the office. She is a second Mama to her brothers, and I am thankful for her help!

Less than an hour after arriving home, Jalen came walking up to me with this very glassy-eyed look on his face. I recognized the look instantly. A few months ago, he had approached me the same way right before having his first seizure. Sure enough, about the time I said, "Ja, are you having a seizure," he vomited all over Jason and myself and started convulsing. I yelled for Jeremy to come and help. The seizure lasted about two minutes. It was worse than the first. I called Jalen's doctor, and he urged us to go the ER. After Jalen's labs came back clear, we left the ER with a plan to take him back to neurology and schedule and EEG soon. 



In the words of my Daddy, "NEVER a dull moment!" Oh and have I mentioned how wonderful my parents are? I have to call them so often to come to the rescue. They never miss a beat! Best Papa and Meemaw ever! I often tell them that we are keeping them young. But, on days like today, I'm not so sure. ;) 



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I know this post is getting long, but I have just a few reminders. :)

Don't forget to place your Norwex orders with Darla before December 31st! Darla has so graciously extended this fundraiser for Josiah. 40% of all order sales go to Josiah's fund! Grab some Christmas gifts and stocking stuffers! Norwex is an awesome product! Follow this link to order: http://darlah.norwex.biz/en_US/customer/party/1858224.


Don't forget about my sister-in-law Alisha's Holiday Vendor Event that she is hosting for Josiah this Friday, December 16th from 5:30-8:30pm at the Diamond Oils Training Center (120 W Main St. Gibsonville, NC 27349). This event will have over 11 vendors from all across North Carolina. A few of the vendors are doTERRA, Thirty One, 4 different LuLaRoe Ladies, Mary Kay, Fosnet Security, Lila Rose, Premier Jewlery, Pampered Chef, Annie's Knit Hats and a few more local crafters. Each vendor will have a item to give away at the in house drawing at 5:30pm. Please make plans to join them at 5:30pm. They will be doing an ON TIME drawing at 6:00pm, and there will be donation jars all around the center for Josiah. Alisha is also raffling off this gun!!! It is an amazing prize! Raffle tickets are $20 each! You can purchase tickets via PayPal, and you do not have to be present for the raffle. So out of town folks should feel free to participate. This is open to everyone so please spread the word and invite your facebook friends and family. For any questions or to buy a raffle ticket please contact Alisha at 336-516-0007. You can see the event on Facebook by following this link: https://www.facebook.com/events/669666283204260/?ti=icl



Thank you again for everyone who is giving to help us! Days like today make this fundraiser for Josiah seem all the more important. Our boy needs this so badly! Thank you to everyone who is helping us make this a reality!

Because of HIS amazing grace,

Christy




Friday, December 9, 2016

Friday Funding Update:
December 9, 2016

$23,597.02!!!!! 
We started this fundraiser a little more than two months ago, and we are well over a third of the way there!!! AMAZING!!! God is so GOOD! We are forever grateful to everyone who has given so far! Josiah is improving steadily. He is far from being back to his "baseline," but we are very thankful for the improvements we have seen. Our specialist appointment to consult about his GERD is on December 13th. Please pray for continued direction. He is still experiencing significant discomfort on and off throughout the day. His self-injury has significantly decreased, but is still an issue multiple times per day. 

We have some exciting fundraisers that we want to share with you!

Darla has graciously extended her Norwex fundraiser for Josiah! 40% of product order sales placed with the following link will be donated to Support Josiah through December 31st! Norwex is a wonderful product and a great Christmas gift idea! Thank you Darla for all of your efforts! Click this link to order! 
http://darlah.norwex.biz/en_US/customer/party/1858224.


Josiah's cousins Sage, Syndey, and Shayla, and his "honorary cousin" Cora are hosting another fundraiser for Josiah TONIGHT at Garden Valley Market (1037 Chapel Hill Rd, Burlington, NC 27215) from 5-7pm. Give a donaton and enjoy a cup of Hot Chocolate! The girl's enthusiasm about raising funds for Josiah has been a blessing to their Aunt's heart! Please come out and encourage their efforts! They raised over $300 at their last hot chocolate stand! In the words of one of Josiah's favorite cartoons, "SMALL IS POWERFUL, Believe it!"


My sister-in-law Alisha is hosting a HUGE and EXCITING Holiday Vendor Event for Josiah on Friday, December 16th from 5:30-8:30pm at the Diamond Oils Training Center (120 W Main St. Gibsonville, NC 27349). This event will have over 11 vendors from all across North Carolina. A few of the vendors are doTERRA, Thirty One, 4 different LuLaRoe Ladies, Mary Kay, Fosnet Security, Lila Rose, Premier Jewlery, Pampered Chef, Annie's Knit Hats and a few more local crafters. Each vendor will have a item to give away at the in house drawing at 5:30pm. Please make plans to join them at 5:30pm. They will be doing an ON TIME drawing at 6:00pm, and there will be donation jars all around the center for Josiah. This is open to everyone so please spread the word and invite your facebook friends and family. For any questions please contact 336-516-0007. You can see the event on Facebook by following this link: https://www.facebook.com/events/669666283204260/?ti=icl

Holding Meemaw's Hand 

We are so very grateful to everyone who has hosted a fundraiser for us! Jenni raised over $500 at her LulaRoe event, and Jennifer made a donation to Josiah's fundraiser from her 31 party. As I have said many times before, every dollar counts!!!!

AND THANK YOU  to everyone who has made a donation via PayPal or by mailing a check to BEACON. We have been amazed by how God is using your generosity to help us reach our goal of $60,000! 

Because of His grace,

Christy



Tuesday, December 6, 2016

I Can't Understand 

The past several weeks have been hard on our kids. It's nothing new. Just a lot more of IT than usual. As much as I try to describe what Josiah's self-injurious behaviors are like to witness, it is simply impossible to grasp unless you see it first hand. His sister and brothers have a front row seat for this heartache, and I cannot fully grasp what that must be like for them. As I often tell them, "I know this is so hard for you. I also know that 
I can't understand fully, because my childhood was very different from yours." It is important to acknowledge that I can't understand, but it is much more important that I remind them WHO can understand. 

The baby fussed for just a second in his sleep this morning, and Josiah bolted awake at 4:30am. I managed to redirect and calm him until 5:45am, but then he very suddenly became overwhelmed and lost it. He started being self-injurious and aggressive right outside the boy's bedroom door. In those moments, it feels as if the entire house is holding its breath and waiting to see if this will be brief or if it will turn into something much more severe. It turned, and Jack was by my side. I managed to get Josiah calm after much exhausting physical effort. I gave instructions to Jack and Olivia to listen and care for their younger brothers while I sat in the van with Josiah. I called Papa to come over and get Jo, and he and Meemaw managed Josiah while I rushed to get the kids out the door for school. And so their day began. 

The baby keeps saying, "Don't leave me, Mom" every time I have to take Josiah for van rides.

Judah worries about not doing a good job in school since he has to finish so much of his homework independently. He gets concerned that I will forget his lunch when I have to manage Josiah's meltdowns while rushing the kids off to school with a promise that I will bring their lunches later. 

Jalen covers his ears and says, "Stop crying Josiah!" Several days ago when Josiah was having a particularly bad meltdown, Jalen ran to his computer and turned on the music video "Traveling Soldier" by the Dixie Chicks, because he knows that song calms Josiah. It was so moving, because Jalen has autism as well. 

Jack's teacher sent me his
prayer request from school.
Jack gets quiet. He doesn't say much about what he is thinking and feeling. But his profound concern is palpable. 

And Olivia mothers. She watches babies and helps with dinner. And yes she tells me how cruddy this all is at times. And I agree. 

The kids have their Christmas concert tonight. The program starts at 7pm, but Josiah has been completely exhausted by 7:30pm. And, since things are so hard for him right now, his schedule dictates everything. Jeremy will go to the program while I stay with Josiah. It's our normal. And it's hard. 

I pray this fundraiser will make a huge difference for Josiah. I pray it for his sake. I pray it for all of our children's sake. 

This is an old picture, but one of my favorites.
Jack, Josiah, and Olivia
God is in control. He has purposes even in these challenges. I pray that God is using Josiah to prepare his siblings to be compassionate Jesus followers who are more fit to love Him and others. Not in spite of their childhood experiences. But perhaps because of them.

Thank you to everyone who is helping us reach our goal. We are profoundly grateful!

Christy





Friday, December 2, 2016

Friday Funding Update:
December 2, 2016

Improvement!
We have a long way to go, but Thursday was the first day in over a week and a half that I saw glimpses of JOY in Josiah! Yesterday he had 10-12 episodes of self injurious behavior. That is a huge improvement considering, a few days ago, we were at almost 50 per day. He was also able to stay at home for as long as two hours before needing to leave for another van ride! We had been spending all day driving in the van. On Wednesday, Josiah's WONDERFUL doctors decided to double his medication dosage. I think it has made all the difference. We can tell that Josiah is still in discomfort. He is experiencing pain especially when he eats. But yesterday, he wasn't beside himself and completely out of control all day long. We pray that he has an even better day today! And we are praying that the Lord will continue to give us wisdom as we figure out this new normal. I wish that Josiah didn't have to live with GERD on top of everything else that he endures, BUT I know that God has purposes even in this. And we are praising our Heavenly Father for the grace He has shown us thus far. 

As far as the funding update, we are so grateful that God is continuing to provide! Our current total, as of yesterday, is $22,782.02! We are overjoyed with the progress that we have made thus far! We have several friends and family who have fundraisers up and going for Josiah right now. Be sure to check them out below! We are so grateful for all of their efforts to help raise funds for Josiah! 

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/ 





My sister-in-law Alisha and friend Ronna are helping their kiddos host a fundraiser for Josiah at Garden Valley Market (1037 Chapel Hill Rd, Burlington, NC 27215) today Friday, December 2nd from 5-7pm. They are accepting donations for Josiah, and, in return, you will get a cup of hot chocolate or cappuccino and a cookie or brownie. Garden Valley Market sales fabulous Christmas trees! Come enjoy a delicious treat while you pick the perfect tree! 




Alisha is also hosting a Holiday Vendor Event for Josiah on Friday, December 16th from 5:30-8:30pm at the Diamond Oils Training Center (120 W Main St. Gibsonville, NC 27349). This event will have over 11 vendors, from all across North Carolina. A few of the vendors are doTERRA, Thirty One, 4 different LuLaRoe Ladies, Mary Kay, Fosnet Security, Lila Rose, Premier Jewlery, Pampered Chef, Annie's Knit Hats and a few more local crafters. Each vendor will have a item to give away at the in house drawing at 5:30pm. Please make plans to join them at 5:30pm. They will be doing an ON TIME drawing at 6:00pm, and there will be donation jars all around the center for Josiah. This is open to everyone so please spread the word and invite your facebook friends and family. For any questions please contact 336-516-0007. You can see the event on Facebook by following this link:
https://www.facebook.com/events/669666283204260/?ti=icl

On Thursday, I caught this precious moment with Josiah and his baby brother Jason. (See video below.) It is so encouraging to see these moments of JOY! Thank you to everyone who is helping us raise these funds for Josiah so that we can bring greater safety and even more JOY into his life!

Thank you all for praying and giving!

Christy

(I prepared this post Thursday evening. Our sweet boy woke self injurious Friday morning. I still believe we are making progress, but this is a reminder of how much this truly is a roller coaster ride. I'm praying the rest of today improves. Please continue to pray with us!)



Tuesday, November 29, 2016

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.