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

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

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

What I want you to know

I have so much I want to say, but I’m too tired.

I’m no different than you reading this.

I want what you want.

For my kids to be included, to have fun, to enjoy life.

Luke was giddy with excitement. Costumes were on.

We headed over to the neighborhood Halloween dinner. And...Luke had a major meltdown there. 

It wasn’t because of lack of parenting or discipline. Do you know how hard it is to not know what is triggering your child? Was it the crowd, was it sensory, was it because we practiced trick or treating but not about the party and dinner? It's exhausting to remember to prepare for every little detail when going out in public. 

No one was unkind, but it is so very embarrassing. Imagine if you were "that family". Let that sink in. Your son is acting up. You don't know why. He's so strong. You need to remove him from the situation now. The three of us struggled to get him back to the house. The rampage then continued for some time inside our walls.

Luke’s heartfelt cries literally broke my heart. Hot tears rolled down his face. I cried sitting there on his bed trying to comfort him. Eventually he calmed down. I got him something to eat. We then went over the visual schedule for trick or treating AGAIN. Sarah and I took him out to about 15 houses and he did wonderfully. He was so very happy that he could participate and not miss out on the fun!

Life isn’t fair. I certainly know that. However, Luke has been through so much more than most could ever imagine. Removal from his birth family at 3 months old, profoundly deaf, adopted at 28 months old, bilateral cochlear implant surgery, the hard work of therapy- learning to listen and understand as well as all the occupational therapy, the diagnosis of autism and then ABA therapy. With resilience and courage, Luke surpassed many goals. He still had much to overcome but he could self-regulate his sensory needs, he was doing fantastic in school and he could participate in social activities. His loving, happy personality was always present.

Then life turned upside down for all of us in March 2018 with the overnight onset of PANDAS. Infections. Viruses. Vocal and physical tics. Light and sound sensitivity. Urinary incontinence. Loss of handwriting. Change in personality. Regression in all areas. Violence and aggression. Not wanting to eat. This has been Luke's life and our life for the last 21 months. To say that life is hard is a vast understatement.

Medical care is a constant challenge and battle. Unfortunately, there is controversy over the validity of PANDAS in the medical world like there was about fibromyalgia 10-15 years ago. We are thankful to have a local pediatrician and neurologist who support us. We are STILL WAITING for labs to come in from The Mayo Clinic. Our pediatrician reached out to them yesterday because it appears some promised labs were cancelled and others were not run at all. 

School is another constant challenge. Can you imagine how exhausting it is to advocate and fight for our son with regards to issues at school? Upon our return from Mayo, we have had several school situations that have needed to be addressed. We are Luke's voice and it burns me up how our special kids get lost or mistreated along the way by the very ones who are responsible for educating them. I am sure I am disliked and talked about behind my back. But I don't care---Luke is my number one concern.

Lastly, and this may be controversial, but we never wanted or expected this Special Needs Family Life. In fact, we tried very hard to avoid it at all costs. It's not our thing. Sorry, but it's true. We don't love it. We don't want it. Most special needs families we  know would desire for their kids to be neurotypical and healthy. And why is that so wrong to say? If you don't live our lives, you have no room to judge.

Hear me out, I know people mean well. 

But please, don't let your only conversation with me be about the special needs coffee shop that recently opened-while I am trick or treating with my son. I already know about it. 

I just want to pretend for 30 minutes that we are a "normal" family, not a "special needs" family. 

Just say "Hi". Or "Luke looks like he's having a blast!" Something. Anything. As long as it doesn't draw attention to his special needs. And how we don't fit in. And how he misses out on so much.

Letting you see into our world is therapeutic for me and I hope educational for you.Thank you for standing beside us on this journey. We are excited and praying for successful outcomes with IVIG therapy. Luke will have his first two infusions on 11/15 and 11/16.

If you would like to read more about Luke's medical story or to donate or share, click here

Luke's GoFundMe

-The Crawford Family

That space in between

We've been home a week. Our whirlwind trip to The Mayo Clinic consisted of  9 medical appointments, blood work, a lumbar puncture, a sleep deprived EEG and a 24 hour EEG in a short period of 4 days.

We are incredibly thankful for so many people who were praying for us! Unfortunately, Luke experienced a relapse of a virus that he regularly comes down with while we were in Minnesota. This caused his behaviors to run even more intense. His anxiety and OCD symptoms were also more prevalent due to the stressful situation.

Right now we are in a holding pattern with things. On Thursday, Luke was prescribed a "bandaid" medicine in the interim to hopefully provide some relief in the severity of symptoms. Unfortunately, no relief yet.

We expect all of Luke's test results to be back by the end of this week. Once they are all in, we can schedule appointments in the next week or so (with Luke's pediatrician and neurologist) to go over individual results and proceed from there. That being said,  both of Luke's EEGs were essentially normal, which is a huge praise! From the labs that have already come back, Luke does have abnormalities with his immune system and metabolism that need to be addressed.

Luke's treatment plan will still include IVIG therapy. His first infusions are scheduled on 11/15 and 11/16. They will last 5-6 hours each day. I have created a social story to help prepare him and I am praying the process will go well. We covet your prayers.

We are humbled by those who have given to Luke's GoFundMe to help with the high costs of  IVIG therapy and for our trip to The Mayo Clinic. Thank you for blessing our family by sharing, giving, and validating Luke's worth.

Medical bills will begin to roll in from Minnesota in the near future. If you would like to share, read more about Luke's story or to donate, please click here Luke's GoFundMe

-The Crawford Family

Ready...set...go....

Thankfulness and Important Prayer Requests

Our week at Mayo is almost upon us! Bags are packed and we are ready for the adventure that awaits us...

In all seriousness, the best way we can get through the challenges of this week is to laugh.

But first, we will be thankful.

A special thank you goes out to the following individuals and their families who recently donated to Luke's medical expenses and trip:

Radhika P, Debbie Dupre, Nichole Jeffrey, Miki Wilhelm, Ginnie Sedlak , Gen Reid, Linda Joye, Terese Eddy, 8 anonymous donations.

We are thankful for God's timing  and for Scott's coworkers that helped make this trip possible with despite his schedule.

We are ever so thankful for those who have been praying for our family during this difficult time.

Prayer requests:

* Safety, health, and protection during our travels and stay

*For "good' behavior by Luke out in public, at the airport, on the plane, at the medical clinic

* For a spirit of peace over Luke. (He has been very anxious lately and his obsessive-compulsive tendencies have been constant.)

*For calm, cool, and patient parents!

*For clear discernment and wisdom for the medical practitioners.

*For a clear plan of action.

*For us to be a testimony of God's goodness to everyone that we come in contact with.

*For others to seek Luke's worth and for those around us to be patient and joyful.

If you would like to read more about Luke's story or to donate, click here:Luke's GoFundMe

PANS/PANDAS Awareness Day-October 9th

On PANS/PANDAS Awareness Day, I thought I would throw out some numbers-Luke's numbers.
Since the onset of his symptoms in March 2018, Luke has seen the following doctors due to infections or symptoms of the disorder:
2 Pediatricians
3 Neurologists
1 Cardiologist
1 Urologist
1 Physician specializing in Autism
1 Psychiatrist
1 ENT Physician
1 Audiologist
1 Dermatologist
1 Allergy Specialist


That's 13 Different Doctors in 3 states in 18 months. His medical file his been reviewed by The University of Arizona and Duke University. Luke's pediatrician and I believe that both organizations dismissed Luke because of his unusual history and various, additional special needs.

During this time, Luke has suffered from numerous strep infections, ear infections, sinus infections, two confirmed cases of the flu, skin infections, and viral infections. He had one observed grand mal seizure in August 2019. His condition has waxed and waned, but he has continued to deteriorate more and more as time goes by.

Luke has had more than 120 lab tests run in the last eighteen months, primarily blood tests, but also flu and strep swabs, urine cultures, stool tests, plus an EEG and CT scan. Think on that for a moment. 

It first started out with the appearance of physical and vocal tics, as well as unexplained crying/kicking/screaming outbursts. However, during the last 18 months, Luke has experienced all of the symptoms (in some way or another) on this list, including: handwriting changes, sensitivity to light and sound, tics, anorexia, obsessions, hyperactivity, irritability, behavioral regression, urinary incontinence, aggression/rage, anxiety, and more.

This condition is believed to affect approximately 1 in 200 children. I continue to share our family's story because I believe that Awareness=Diagnosis=Treatment.
Our kids at least deserve this much.

We are thankful for the opportunity to be evaluated by The Mayo Clinic in the near future. And we are humbled by those who have continued to pray for our family and for those who have donated to Luke's medical care. It truly takes a village and this journey is not yet over.

If you would like to read more about Luke's journey or to donate, please click here: Luke's story

Hope-filled paths

   

I guide you in the way of wisdom and lead you along straight paths. I know how confused you sometimes feel-and how much you long to find the way forward. You have tried so many different things; you have been so hopeful at times. Yet your hope-filled paths have led to disappointment. I want you to know that I fully understand how hard your journey has been. I also assure you that I can bring good out of every bit of it.
 This is the way of wisdom: trusting Me no matter what happens in your life. It is through trust that you follow Me along the right path. There are so many things that seem random or wrong as you go along your journey. Yet I am able to fit them all into a comprehensive plan for good-My Master Plan. So don't be fooled by the way things appear at a given point in time. You are looking at only a very small piece of a massively big picture. From your limited perspective, your journey may be confusing, with puzzling twists and turns. However, from My limitless, big-picture perspective, I am indeed leading you along straight paths. - Sarah Young

If you are struggling today, I pray that this devotion would encourage you as it did me.
-Jo Anna



Read about Luke's story here

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

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

Comfort zone? What comfort zone?

Have you ever been in a continual stage of uncomfortable growth?

I have, I am.

And I H-A-T-E confrontation.

But as a parent who has a child with multiple special needs and is not yet verbal, I must BE HIS VOICE.

I often get tired of battling the school system, the medical system, and the list goes on...

Endless emails and phone calls.

Researching therapies and interventions.

I don't care if said people don't like me.

But I have a problem when they dismiss my concerns.

I have a problem when requirements are not being met.

So... bring on Momma Bear.

There's more than one way to skin a cat.

And all the special needs mommas said "Amen."

To be continued...

Observations and lessons learned while traveling with a child with special needs

We had a quick trip to Cleveland-less than 48 hours round trip! We like our new provider, he is brilliant. Our appointment lasted about 4 hours. We have a plan in place. We have a myriad of lab tests ordered that once the results are back, will further help to guide us. Here are some nuggets I have gleaned from our trip:

1. Prayer works. I don’t mean like a genie who grants me a wish. God hears our prayers and the prayers of others on behalf of us. Our first travel day-Monday-went smoothly and I give that credit to God for answering prayer. It’s okay to ask for intercession from others! Thankful for my community of prayer warriors.

2. Special needs families live in a totally different way than “typical” families. The planning is intense. We are always hypervigilant and on high alert, attending to our child’s needs and proactively trying to intervene before things go awry. Structure and planning help things to go more smoothly.

3. There are still genuinely nice people in the world. A kind and compassionate mom we didn’t know showed me kindness on two returning flights. Luke was really struggling and I was receiving the brunt of it. To actually be SEEN and not judged was a gift. We need more people like her in the world.

4. Roll with the punches and keep your sense of humor. Be as flexible as possible. Our challenges to get through security in Cleveland was truly comical. First time I’ve ever been patted down by a female officer! Evidently, my insulin pump and Luke’s cochlear implants were a concern. Just remember that these hiccups will make for a great story one day!

5. Don’t be afraid to request help. Two of the best decisions were to ask my dad to come with us and to request wheelchair assistance from the airlines. An extra set of hands is invaluable. Having an escort and wheelchair to help us navigate a large airport and get Luke from Point A to Point B was such a lifesaver, especially when our gate was changed last minute.

6. It’s okay to grieve, but then appreciate what you have. I often miss our old life. The easy, “perfect” life. The life where we didn’t have to plan everything, the life with no meltdowns, the life without communication frustrations, the life before specialists and therapies, the life where money was abundant and life was fun. These thoughts often crop up when traveling for a medical appointment. I compare the life I am living to the life I used to live. But wake up Buttercup! Don’t miss the beauty and purpose of your current life. Others are watching. Your child needs you. Rise up. (Preaching to myself here.)

7. Brave is what you do and brave is who you are. Never forget this. There are so many unknowns and so many questions to answer. If your child isn’t getting the medical care they need or deserve, you need to look elsewhere. Yes, it’s scary. Yes, it’s expensive. But getting on that plane to see a new provider may be the very thing your child needs to begin his journey to healing.

8. Practice Gratitude. We can find many things (big and small) to be thankful for every single day. Diligently look for them. The trampoline in the doctor’s waiting area was definitely one of them!

9. Seek the advice of others. I suggest seeking advice from others who have been there done that (BTDT). The special needs moms you trust and align with in vision. The ones that are have been on the journey longer. The ones who have traveled with their special kiddos. These moms have great insight and are usually willing to share their wisdom.

10. Give yourself grace. You are doing the best you can and you are doing better than you think! You feel as though you have the weight of the world on your shoulders. But dear, it’s not for you to bare alone. Remember to practice small ways of self-care, even when traveling.

-Jo Anna

Prayers appreciated- upcoming appointment for Luke

As most of you know, Luke became ill in March 2018 with a pediatric autoimmune neuropsychiatric disorder. To say that life has continued to be most challenging is an understatement. My dad, Luke, and I will be flying to Cleveland on Monday. Our appointment with the specialist is on Tuesday and we will fly back to NC on Wednesday.

I am asking for prayer, specifically in these ways:

*safety, health, and protection during the entire trip

*compliance from Luke in doing what is asked of him

*for Luke to be free from anxiety and fear

*no aggression or outbursts from Luke (especially in public)

*good, quiet behavior on flights

*kind, understanding airline staff and folks around us

*wisdom and discernment for the specialist

*good, productive first appointment

*for a treatment plan to be suggested that we can successfully implement, ultimately leading to reduction in symptoms and healing for Luke


We cannot thank you enough for your love, support, and prayers.

-Jo Anna

Isn't it Ironic?

Life has a funny way of working things out. Things you never thought you would do or say often come to fruition later on in life. So ironic! I never cease to be amazed at how far I have come, ahem, or rather how much I have changed.

I never wanted to get married right out of college. Ha! Scott and I graduated and got married the very same month at the young age of 23.

I said I would never drive a minivan and be “that mom.” Ha-ha! Never say never. And by the way, I do love my minivan.

When we were going through the adoption process, our family felt strongly that we were not equipped to deal with a child who had a significant lifelong intellectual disability. And yet God gave us Luke!

Raise your hand if you hate being at the center of controversy and you avoid confrontation like the plague? This is sooooo me. And yet here we are, with a child who is deaf, who wears cochlear implants, who is nonverbal, and uses sign language. When we first brought Luke home, we received so much grief from others on both sides of the argument over the decision to give him the gift of hearing. Why, oh why, do people have to be so divided? Are we not his parents? Is it not our decision to make? EVERY person’s story is different. One size doesn’t fit all. Let me assure you that we have Luke’s best interests at heart.

You see where I’m getting at don’t you?

Life is ever changing. The process of learning and growing never ends until you take your last breath on this earth.

Let’s talk about advocacy for a child who had multiple specials needs. School issues, medical insurance issues, provider issues, communication issues, therapy issues, childcare issues, lack of resources available. Not to mention there is NEVER enough time or money!

I can tell you from experience, that when a child receives a diagnosis of the big A word (AUTISM), parents feel anxious and uncertain. The magnitude of the situation weighs so heavy. Too many unknowns to wrap one’s mind around. Almost immediately, parents move into the research and learning phase. So overwhelmed with all of the information and being inundated by differing opinions of various treatments available, parents often follow the advice of their beloved pediatrician. Traditional medicine compartmentalizes each symptom. The resulting norm is to send the child to multiple, different therapies to help the child narrow the gap between “normal” development and their deficit. The traditional medical community does not look at healing the root cause but at treating the symptoms.

After a while, we figured things out a bit. We found our way to navigate this world of special needs. Luke made some dietary changes that helped with behavior and we continued his therapies. In came our breath of fresh air, Kelly, and Luke began to blossom! He made remarkable progress in all areas over the span of 3 years. Although it has always been a dance of one step forward, two steps back—we had come so far.

Everything came to a screeching halt in March 2018. Overnight, Luke developed vocal and physical tics, crying outbursts/anger episodes, changes in handwriting, and light sensitivity. We learned that Luke developed PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). Since then, he has lost about 3 years of gains, especially in the areas of behavior.

Isn’t it ironic that our longtime pediatrician who was the first one to diagnose Luke with PANDAS turned her back on us and couldn’t/wouldn’t try to help us? And that this disorder is controversial? And that our large, local pediatric healthcare system as well as an even larger one further east in the state doesn’t support or acknowledge this diagnosis? Why is it so hard to recognize PANDAS as a medical condition?

Thankfully, we have a new local pediatrician who is supportive. We have traveled to SC for medical appointments and we will be in Ohio later this month to see a specialist. All out of pocket. Traditional medicine has failed my son. Yes, we have tried the medication route. The waitlist for Applied Behavior Analysis Therapy is around a year. We have moved to an even cleaner diet and biomedical/functional medicine approach. We won’t quit on our son-we can’t! What would you do?

I have learned so much over the last 10 months. My perspective has broadened. I now see how naïve and close-minded I was on certain things prior to this journey. I am thankful for those dear ones who have helped me navigate this new world and not feel so alone. And so with that, I humbly encourage each one of you to learn, grow, and be open to new thoughts and possibilities.