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

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

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