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

The silent battle of special needs and medical care

Most people are aware of the constant battle for advocacy in the educational system when it comes to special needs. But there is another looming battle that special needs families face on a daily basis-medical care. Medical discrimination is real. It is something we personally deal with on a regular basis with Luke. I have many personal stories I could tell about Luke. But it is not just us. Hear me: Individuals with autism and/or other special needs are much more likely to experience medical discrimination.

I was reminded of this again this morning thanks to FB Memories. Two years ago,  we went to Duke to see pediatric ophthalmology for Luke's newly developed lazy eye. We waited 3 HOURS before we even got placed in an exam room. When the doctor finally did come in, she spent 5 MINUTES with us. I explained that the onset of his lazy eye had occurred a few months earlier and I would like to know how to treat it. Did he need to wear a patch? What would be the course of action? She said that nothing needed to be done. I told her that I would like it treated-Luke didn't look this way before.  I left furious. Although she apologized for the long wait, that doesn't make up for the 90 minute drive there, more than 3 hour wait, 5 minute visit with no resolution, and a 90 minute drive back home. If I had brought in a verbal, pretty little girl, do you think she would have come up with a treatment plan for her? I do. I believe that because my son had special needs and was non-verbal, he wasn't provided adequate medical care.

Or what about the time I took Luke to the Emergency Department because I was sure he had C. diff. Clostridioides difficile (also known as C. diff) is a bacterium that causes diarrhea and colitis (an inflammation of the colon). The resident told me it was just a virus and I was just an overly worried mother. It took me another week before he was diagnosed and received treatment because I had to go through the process of getting  a stool test ordered by the pediatrician and all the steps of having sample evaluated. Not only am I also a medical professional, but I am a mother who knows my son. Respect the input of caretakers.

Luke's medical symptoms often get dismissed as "it's just autism". This is just WRONG. Because he cannot verbalize or pinpoint what is wrong, most of the time he is not even given an adequate exam. Unfortunately, there is a  lack of the standard of care for individuals with autism. Did you know that individuals with autism spectrum disorders have a higher comorbidity burden than the general pediatric population, including higher rates of seizures, psychiatric illness, and gastrointestinal disorder? .And yet, these comorbidities are not often addressed. THIS NEEDS TO CHANGE.

Similar to the school system, when a child is medically complex and doesn't fit in one or two boxes, providers often do not know what to do with them. Parents are left exasperated. And the children's needs are not adequately cared for. Luke has been passed over by medical programs at several medical institutions in multiple states because of this very bias. Luke has multiple diagnoses: deafness, autism, Usher Syndrome, PANDAS, as well as mitochondrial, metabolic, and immune dysfunction. And he is nonverbal. He is not less of a human. He deserves appropriate medical care. And we are not alone. I could share additional personal stories as well as story after story of others who experience this bias.  THIS NEEDS TO CHANGE. 

The purpose of this post is to educate others- those who know nothing of the battle we fight, and those parents who are in the midst of this very battle themselves. Awareness is the first step to addressing a problem. We must all do our part to give these families a voice to receive appropriate medical care for their loved ones.

** I am thankful to share that Luke is currently under the primary care of a wonderful, attentive pediatrician and neurologist who are addressing his medical needs.**

Be BOLD,
Jo Anna

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

Cutting for a Cause - Follow Up

On January 15th, 2012 friends of ours at Progressive Image Day Salon held an adoption fund raiser for us called Cutting for a Cause. We made $1500 towards our adoption costs from 2-6pm that day.

Debbie Jones (co-owner of the salon) had asked to change their usual partial ad in Forsyth Woman magazine for their business to include a promo for CFAC. The editor found our story so compelling that they chose to give us a full ad that described our adoption story in great detail, along with Progressive Image's efforts to assist. We were so honored...and somewhat embarassed by the exposure. BUT, God used this to bring folks in the door for the event that would not have otherwise, and He connected us with new friends and resources.

Fast forward to the beginning of June...
We had been home with our boys for about a month (arriving here on May 8th). Carolyn Peterson from FW contacted us about a follow up. Jo Anna did an outstanding job explaining in further detail our story and they included some wonderful pictures of our new family. Here is the link to this month's issue. Our story is on their page 46. http://www.forsythmags.com/backoffice/Web%20Pdfs/07-12WEBpdfs/FF07-12Book.pdf

We have been blessed to adopt, though you may say the boys have been blessed to be a part of our family. Jo Anna and I were called to adopt, after we had been adopted into God the Father's family through His Son, Jesus Christ, sealed with the Holy Spirit unto eternal life. As my lovely wife said in the article, not everyone is called to do so. BUT, if you are a Christ-follower you have an obligation to do something. I personally feel honored to be a part of the Together for Adoption organization, involved with exhibitor planning and on-site coordination for the conferences. "We believe the theology of Adoption is transformative on so many levels: for the Church, for churches, for Christian experience, and for mobilizing and empowering long-term engagement in the global orphan crisis." Our national conference is coming up this September 14th and 15th at Cross Pointe Church in Atlanta, GA. If you want to learn more about how you can get involved, this is an excellent place to learn how you can do so. Or, maybe you are feeling the 'tug' to adopt or be engaged in foster care - I can't think of a better place for you to be that weekend. Visit the website by clicking on my first badge on the left for more details. Thank you for partnering with us as we are living in THE story!

Scott

Bringing L and J Home...FOR GOOD!

Deuteronomy 31:6 "Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.”

Today YOU have a unique opportunity. Two precious young boys, J and L are waiting for a forever family...specifically OURS. We were officially matched October 13th and the USCIS approved their visa applications on February 7^th (Scott’s birthday). The authorization to travel is expected in the next 6-8 weeks.

As you may already know from our original post, we are stepping out in faith to adopt these 2 little toddler boys (our girls are 9 and 11) with the younger having complete hearing loss. God has brought us this far, and He will not leave or forsake us...EVER. Jo Anna is possibly not returning to work in any substantial way...any time soon. In addition, L's medical bills alone will be impacting the family budget. Currently, we are confident that we can provide for our soon-to-be family of 6, but the initial costs are immense. This is where you come in. You get to be a part of something so much bigger than ourselves. You get to be a part of a story and get to help unite a family with their little boys. L and J are about to be orphans no more. Please help us so we can travel without having to worry about funds.

In celebration and in an effort to raise the funds for this trip we're offering a chance for your very own iPad!

Here's how it works. A fellow adoptive family was kind enough to donate a brand new iPad because they understand the financial strains put a family that chooses to adopt (in our case, 2 children at once). There is a helping others paypal donate button on my blog in the upper left hand corner. You can donate there by Paypal or credit card.

Donate $25 for 1 opportunity for the giveaway.  You may choose to donate more than once. ***DEAL: 2 opportunities for a $40 donation! Also, If you believe in what we are doing please consider spreading the word:

1. Repost on your blog or Facebook.
2. Tell others via email and other media.

We believe this will be our last fund raiser, with the goal of finishing off the purchase of airfare (2 adults and 2 children). Cutting for a Cause contributions made up the difference for this and accommodations. Entries will be numbered in order of donation receipt (displayed on blog) and the giveaway will be random.



The fine print disclaimer. In order for this FUNdraiser to happen we must raise at least $3000 for it to be ON! We need just 120 folks at $25 each to do this. We will announce when we hit that point and once we do, the giveaway will end 7 days later. This is NOT a r-a-f-f-l-e, please do not mention that it is. This IS helping to bring children into their forever family!