Would you commit to pray for Luke for 7 days?

Luke’s IVIG infusions are scheduled for this coming Friday and Saturday.

Would you commit to pray for Luke for 7 days?

Sun 11/10: For PEACE in our home

Mon 11/11: For Luke’s anxiety and fear to be minimal during the infusions

Tues 11/12: For Luke to be compliant and do what is asked of him during infusions and for him to not rip IV out.

Wed 11/13: For Luke to show no aggression or violence

Thur 11/14: For an important IEP meeting for Luke at school and telephone appointment with Luke’s neurologist.

Friday 11/15: For the 2 nurses who will be here administrating the medication.

Sat 11/16: For minimal side effects and for the infusions to be successful in treating Luke’s condition.

To read more about Luke's story or to share or donate, click here Luke's GoFundMe

Brain Inflammation...A small snip-it into our lives

This morning was not a one-time only event. The severity and details vary but this is a taste of what we are dealing with and how unwell Luke is. We love Luke. This neuro-immune disorder is wrecking havoc on our son and on our family. Luke is a 9 year old boy who has taken naps 3 days in a row. His OCD is off the charts.

It took 45 minutes of concerted effort to get Luke out of his bed and downstairs this morning. Kicking, hitting, holding onto the mattress, and more. He then refused to go to the bathroom, but, after much coaxing, I managed to get clothes on him.  He refused to eat any breakfast, but with Scott’s help, Luke took his medicine/supplements and had a few sips of water.  Luke also emphatically refused to wear his cochlear implants -so I put them and his breakfast in his backpack. He scratched and hit and threw things this morning. 

Jansen took the bus to school so he didn’t have to deal with the drama or embarrassment. Scott and I got Luke into the van. He took off his shoes and threw them at me. He then covered his eyes during the ride to school and cried real tears. When we got close to the school he held my hand. As he got out of the van, he hit me. 30 seconds later as he was walking towards the school doors, he looked back and signed “I love you” to me. 

This. Is. Hard. 

We want our Luke back. 

Would you join us in prayer that the IV Infusion treatments will be successful?

-Jo Anna

Luke Crawford's GoFundMe Page

Update on Luke; IVIG arrived today

 Scott and I were very reluctant to verbalize our need for possible fear of judgement or fallout . Our journey has been so unexpected and challenging. Rachael has asked us for months to be humble and share our family's story. 

With that being said, the update below was written by our oldest daughter Rachael: For the past year and a half, my nine-year-old brother, Luke, has been suffering from a neuro-immune condition. His dysfunctional immune system has resulted in frequent viruses and infections as well as psychiatric symptoms such as violent behavior towards himself and others, extreme OCD tendencies, and abrupt motor or vocal tics. He has deteriorated during this time and recently experienced a gran mal seizure at home. Luke is internationally adopted, nonverbal, deaf (he has the assistance of cochlear implants) and was diagnosed with autism at age three. He is also suspected to have Type I Ushers Syndrome which causes blindness in early adulthood.


Prior to this illness, Luke was potty trained, used some sign language, understood a good bit receptively by hearing, and could do kindergarten level reading and math. He was a joyful child who loved life! Thanks to a wonderful interpreter and multiple private therapies, Luke was able to reach goals that no one thought he could reach, and his future was bright!
All of that progress began to deteriorate when Luke fell sick. Our family, a household of six, searched out treatment with conventional medicine (multiple specialists in and out of state, bloodwork, tests, and prescriptions) as well as functional medicine (natural methods including essential oils, diet/medicinal foods, and supplements). Nothing seems to make a lasting difference, especially with the violence. Hitting, kicking, scratching, biting, and throwing objects are now a part of our daily life. Over the last six months, Luke has broken our TV, kitchen window, several toilet seats and we have holes in the walls. Mom is also living proof of the violence with scars and scratches evident on her arms. The financial toll of all of this is overwhelming.


From January to May, Luke had medical appts in three states. My parents spent over $5,000 out of pocket on Luke’s medical care during this time. Since June, Luke has been to the emergency department three times, had one ambulance ride, was placed under general anesthesia twice for tests, and has seen multiple providers in two states and had a chart review by Duke and the University of Arizona. The bills are beginning to come in and are estimated to be at least another $5,000.


We want the Luke we know and love back! The next step of treatment is IVIG infusion via home health nursing. Intravenous Immunoglobulin Therapy gives you antibodies that your body can’t make on its own. Due to its high of manufacturing and administering the product, IVIG is an expensive therapy. The total cost of IVIG therapy ranges from $5000 to $10,000, depending on the patient's weight and number of infusions per course. Our insurance recently approved Luke’s appeal but our estimated costs will be a minimum of $1800.


Both of my parents are hardworking; my dad works full-time, and my mom works part-time; even with the chronic medical conditions they too face like Type I Diabetes and Degenerative Disk Disease/Chronic Systemic Inflammation. My dad had two surgeries last year and was out of work for four months recuperating. Any costs mentioned do not include the other five family members. I’m currently in college and next year there will be two of us in college. Assistance such as Medicaid takes years on the waitlist. Luke has been on the waitlist for over five years and has an estimated five more years to wait. My family does not qualify for other kinds of assistance.

Please consider helping us support Luke’s medical treatment needed in the coming months. Any donation amount will be greatly appreciated. Thank you for reading and sharing our cause!

Click on the link below:
Luke's GoFundMe

Happy 4th Birthday Luke and Mom's two wishes

Luke loves technology. This picture accurately portrays our little man. Playing on the IPad makes his day.

Luke continues to grow and make strides developmentally in all areas. His eye contact, appropriate displays of affection, and listening skills are his 3 greatest areas of improvement. Luke has a long road ahead of him, but we are thankful for his accomplishments this far. We have a great network of providers who truly have Luke's best interests at heart.

Two attainable goals I would love to see Luke accomplish this year are:
1. Begin speaking some basic words
2. Successful potty training

Mark 10:27
Jesus looked at them and said, “With man this is impossible, but not with God; all things are possible with God.”

Happy 4th birthday to the little boy who holds the key to my heart more fiercely than I could ever imagine, who drives me crazy at times, and who has brought me to my knees in prayer more than anyone or anything else in my life. I can't imagine what life would be without you.

2013- The Year in Review

dichotomy
di·chot·o·my
noun
1.a division or contrast between two things that are or are represented as being opposed or entirely different.

This one word accurately portrays our year. Trials. Love poured out. We have felt so loved by family and friends this year. Sharing life with others has made our journey more joyful and genuine, even in the hard times.

I'm not going to lie. The last 5 years have been difficult for our family in numerous ways: financially, physically, educationally, etc. Each year the intensity has multiplied. Nonetheless, we are thankful. We are thankful for the time and resources God has given us. God never leaves us or forsakes us. We have been saddened to see friends and family go through unthinkable hardships and yet remain hopeful and steadfast. We have witnessed beauty for ashes.

Some of our 2013 highlights and lowlights:

January- Luke began attending the Hearing Impaired Preschool program at Diggs-Latham Elementary. I traveled to London and had a fabulous time with one of my closest and dearest friends.

February-Scott started a new job at Wake Forest Baptist Health as director of the Cancer Center Pharmacy. Scott was a victim of an automobile accident but only sustained minor injuries. Due to multiple ear infections, Luke had surgery to insert ear tubes for drainage.

March-Luke's genetics appointment revealed 2 DNA variants associated with Usher Syndrome (deaf/blindness syndrome). Thankfully, no visual symptoms are present yet, which means no diagnosis is necessary at this time.

April, May-Scott attended Summit9- a national adoption conference in Nashville, TN. We celebrated Luke and Jansen being home one year.

June, July-Jo Anna and kids traveled to PA twice to visit family. We made a stop in OH to visit the Robinson family. We visited Louisville, KY. Our family celebrated Rachael's 13th birthday week at Myrtle Beach. She also had a party with 11 of her closest friends which included a limo ride, pizza at Mellow Mushroom, and dessert at Midtown Café.

August, September-Jansen started kindergarten at Diggs-Latham Elementary School.

October, November-This was the 5th year that Scott volunteered at the Together for Adoption Conference. This year, the event took place in Louisville, KY. Luke had surgery, once again, to insert ear tubes.

December- Scott got a concussion at work, tore a ligament in his foot, and suffered from an awful GI bug that required a hospital visit.

We are looking forward to see what God has in store for us in 2014.

Jo Anna

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