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

One Month Progress Update

 If you had told me a month ago, that our family would be able to drive 8 hours on Wednesday, celebrate Thanksgiving with family on Thursday, and drive 8 hours home on Friday ---I wouldn't have believed you. On top of that, Luke participated in Christmas bingo with his siblings and cousins like a champ!

 But thanks to God, the prayers of others and the IVIG, we did it! Don't get me wrong--Life is still challenging. Luke still has autism. Transitions can still be hard. However, we are seeing incremental improvements which allow us to get out of the house more often so we can enjoy life and make memories.

 Luke's anxiety and aggression have almost disappeared entirely. His OCD tendencies aren't as extreme. We are able to redirect him easier. He is happier and more compliant. At school, Luke has been more attentive, has more expressive communication, and exhibits excellent behavior. He hasn't gotten sick and has stayed healthy.

  We feel like our family has a new lease on life. We just put Luke's dresser and drawers back in his room-they were removed months ago because he would pull them out and throw them during his fits of rage.

 We decorated the house over the weekend for Christmas- without fear of things being broken and destroyed. Prior to IVIG, we wouldn't have been able to do this.

  On Saturday, the kids and I were able to visit friends and do Christmas crafts with them. Luke was great for the first two hours before behavior challenges popped up, most likely due to too much sugar! But we are counting the blessings for understanding friends and for the time we shared.

  Right now, the plan is for Luke to have 6 months of IVIG therapy. Luke's second round of infusions is scheduled later this week (12/13 and 12/14). The same fantastic nurse will be here.
Would you please continue to pray for compliance, little to no fear/anxiety, minimal side effects and successful outcomes?

I would have lost heart, unless I had believed that I would see the goodness of the Lord in the land of the living. Psalm 27:13