2019- Year in Review

Every year in late December, I prayerfully consider my one word for the upcoming year. My word for 2019 was Healing. It was something that was elusive, but I was determined to cling to. We came out of 2018 broken and beat down. In 2018, Scott had two surgeries and was out of work for 15 weeks between the two. Luke developed an onset of PANDAS in March 2018 that began a downward spiral of his health and subsequently...our lives and sanity suffered tremendously.                                                                                                                                                                                                                                          2019 was one the hardest year of our lives in so many ways. In January, my dad, Luke and I flew to Ohio for appts with a medical specialist there. We were determined to get Luke the help he needed, but it wasn't a good fit.

Luke continued to worsen and we trudged on with his local pediatrician and neurologist in SC trying to find successful treatment.

In April, I was blessed to go on a Rodan and Fields award trip to Cabo, Mexico with my friend Danielle. It was a fantastic time of respite and fun for me that I will never forget!

Summer came and went. Luke and I stayed home while the rest of the family spent a week at the beach. He was sick often, as well as violent towards others and destructive with property. Between Luke's new skin infections and suffering from a grand mal seizure, he was seen 3 times at the Pediatric Emergency Department. We were at our lowest point. IVIG had been denied by our insurance. Clinics in Arizona and at Duke declined seeing Luke. Life looked bleak. We were emotionally, physically, and financially defeated.

 Then September came and the sun began to come out. Life was still super challenging but the IVIG was approved on appeal. Our insurance company coordinated a visit to The Mayo Clinic in Rochester, Minnesota in October. Rachael, our oldest daughter, coordinated a GoFundMe to help with Luke's medical expenses. We were blessed to receive enough to cover our out of pocket for 3 months of IVIG therapy and 3 airplane tickets to Minnesota!

 Although the trip was very stressful and not what we expected, important medical tests were done. Luke had two EEGs and a lumbar puncture, which ruled out Autoimmune Encephalitis. For that, we are grateful .

The week before Luke's first round of  IVIG infusions was filled with prayer and anticipation. November 15th and 16th were finally here! God blessed us with an incredible male nurse to work with Luke. We are so thankful God orchestrated for Kyle to be with us monthly for these infusions.

 Remember my word for 2019? Healing began after Luke's first IVIG infusion. We saw a remarkable improvement that first month. Violence and aggression were gone. Our happy Luke was back! He felt better and it showed-both at school and at home.

The kids and I were able to travel and spend a few days with family at Thanksgiving. A month earlier, I never would have believed this was possible.

 December came and we were able to decorate for Christmas and put the furniture back in Luke's room without fear of him damaging things. We went on a few outings, baked cookies, and other Christmas traditions.

 


We are able to breathe again. Luke will have at least 6 series of monthly IVIG infusions. His next dates are January 10th and 11th.

2019 has been one of the most challenging and turbulent years. Yet through it all God has been faithful and joy has been there too! We may be bruised from the battle, but we are still standing. And we are seeing Healing. For the village that has stood with us, in prayer and through financial gifts, we are humbled and ask God to bless each of you for taking part in our miracle. May God be glorified in the midst of our messy lives!

-Jo Anna

You can read more about Luke's story here Luke's GoFundMe

On the horizon

We are so appreciative of your prayers and support. The days have been long and hard as of late. Luke has had at least one really challenging meltdown daily-usually over an obsessive thought that he cannot recover from. He has also been napping several days a week. This tells us that he isn't well.

Luke's home IV infusions will begin soon. He will be receiving high dose Gamunex-C two days in a row every 4 weeks. These infusions will take around 6 hours each day. He is also scheduled to be admitted to the Epilepsy Monitoring Unit for several days later in October. We have consulted with Cochlear Americas and Luke is not able to have a brain MRI due to the magnets surgically attached to his skull bone. Even if they were to remove them, the shadowing would make the results useless. We are still trying to a lumbar puncture scheduled as both his neurologist and pediatrician want it done.

Since the Autoimmune Brain Disease Clinic at Duke denied Luke into their program, Banner Clinic in Arizona is reviewing his case for the second time. Our pediatrician was told that Banner preferred for Luke to be followed by a clinic closer to us geographically, but since that is no longer an option-they may take on Luke's case. That being said, it is possible that we may be traveling to Arizona in the future.

We are so thankful for the following individuals and their family who sacrificially donated towards Luke's medical treatment:
Daniel Blink , Elijah Caudill, Luke Kerry

Kevin McCarthy, Ben Uloko, Michaela Scott 

Amber Esch, Karsyn Bell, Alyssa Yanez 

Nathaniel Hargrove, Gracie Comer, Melvin Argueta  

Payten Gray, Zachary Covely, Dylan Parker

Dalton East, Brendan Popella, Dante Mckenzie 

Brent Rutledge, Gabriel Tedder, Sam Elter

A Dunbar, Valerie Wieners Massie, Tracy Stimpson

Kelly Bunch, Oscar Pecina, Jayne Warbinton 

Ada Goren, Corrie Weaver, Betsy McCarren

Lauren Blevins, Kristin Thomson, Valbona B 

Carley Jolley, Christina Knickle, Jim Ciesielski  

Wanda Curley, Laura Wayland, Michael Young,

Jenni Carowan, Robert Cline, 3 anonymous donations

If you would like to contribute, click on this link Luke's GoFundMe

-The Crawford Family

One year under our belt: Gotcha Day in Pictures (May 2, 2012)

When you know that you know that you know...

Alternate title: God Wants To Ruin Your Life

As we are quickly approaching our one year mark of having the boys in our family, I feel compelled to tell our story of how the Lord led us specifically to these little boys. God works in big ways and small ways, in loud booms and in quiet whispers. Each family's journey is unique. L and J's referral picture was taken in July 2011.

When we have our "hard days" with our kids from "hard places", it helps us to know that God has directed our path to these boys. It is His Story. That gives us confidence and comfort in knowing that He knows the outcome and He is with us each step of the way. We pray that this story encourages you as much as it does us. This was written in August 2011, just a few days after receiving our boys' information.

For our 10 year wedding anniversary (May 2007), Scott gave me the option of a piece of jewelry or for us to go on the Christian MusicBoat Cruise from Miami to Jamaica. I chose the cruise. That spring, I began to be interested in researching foster care and adoption. I really didn't know why I was so intrigued by it. But God kept putting people and situations in my path that involved those 2 topics. The topper was on the cruise when David Nasser preached from Isaiah 6. The title of his sermon was "God wants to ruin your life." Well, it was there that God told me (not in an audible voice) "I want you to adopt." I "saw" a vision of two little boys of latino or filipino heritage? In my spoiled, sinful state, I didn't like that proclamation very much. In fact, I wrestled with God the rest of that trip. I was MISERABLE. Scott didn't know why. I wouldn't tell him. Our trip pretty much sucked thanks to me. I just prayed that if this was in fact from the Lord, that Scott would also come to that same conclusion. I wouldn't push him. In fact, I prayed privately about this for about 6 months before I even mentioned the subject of adoption to Scott. At first, he thought I was crazy. But I asked if he would pray about it. He said yes. We began praying about it as a family as well. Of course, the girls were onboard from the get-go.

On Monday, Jan 12, 2009 Scott called me right before I went into my BSF leadership meeting. He told me he believed God has called us to adopt, he was onboard, and let's started! I was so happy. Deep down, I never even thought we would get to this point. I knew it was God. Just a few days earlier, I had learned about an adoption information expo that was going to happen at a local church. I asked Scott if we wanted to go to the "Hands of Hope" Adoption expo that weekend. He said yes. It was there that we began our process together.

When we received the initial info on Samuel (SHF listing) in Jan 2010, everything looked good. Even though I believed the Lord had called us to brothers, I really thought "Samuel was the one". It was only after we asked additional questions and received the email (through ICAB) from the foster mother in February 2010 that the Lord made it very clear in several ways of confirmation that Samuel was NOT the one.

Ever since then, we have prayed for clear confirmation from the Lord. Some sort of connection or something to confirm to us who our children are. Here's what I believe is the connection: The date of the adoption expo was January 17, 2009. The date of the social worker's first visit to Jansen's home was January 17, 2009. Luke of course wouldn't even be born for another year. When I read through their cases again the other night, the Lord reminded me of that date. I went through our adoption paperwork and found a bulletin from that expo. Although I may be crazy, I believe the Lord showed me that as confirmation that he planned for Jansen and Luke to be in our family. To me, that is no coincidence.

I know that God's plans are not our plans. I truly hope that I am not going to be disappointed again by unfulfilled expectations. I pray that we are in the center of God's will and that the Lord continues to confirm. Isaiah 30 says 20 Although the Lord gives you the bread of adversity and the water of affliction, your teachers will be hidden no more; with your own eyes you will see them. 21 Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.”

Jo Anna