Medical Issues, Opsoclonus Myoclonus Syndrome

New Video from NORD

New Video from NORD

New Video from NORD

Here is a brand New Video from NORD. For those who have no clue what NORD is…it is the National Organization for Rare Disorders. This site does not have run-of-the-mill type of conditions. By “run of the mill,” I mean those diagnosed frequently.

Awareness

This site is all of the hardcore, rare, little to no treatment type of condition. I am very excited that Mike Michaelis and his team have worked hard on the OMS Life Foundation.

Who DOES NOT buy things from Amazon? If you do, you can go to Amazon Smile and make all your purchases there. It is the same as Amazon, only this time, a percentage of what you buy goes to a charitable donation.

Amazon Smile does not cost you a dime:

  1. Choose your charitable organization and type in “OMSLife Foundation” (in Cypress, TX).
  2. Select that option.
  3. Anything you spend will help the foundation raise money and increase awareness of H’s condition.

NORD Rare Disease Video Library

“The NORD Rare Disease Video Library houses educational videos on rare diseases for patients, caregivers, students, professionals, and the public. NORD works with medical experts and patient organizations to develop the videos, which are made possible by individual donations, educational grants, and corporate sponsorship. NORD is solely responsible for the content.”

All About Opsoclonus Myoclonus Syndrome

All About OMS

If you click on the above link, it will take you to an awesome video that explains OMS very simply. All the things in my head have formed into a video. I am pleased as punch for them to highlight this condition.

OMS is not a “money maker” because it is so rare. That means funding and research are not done because there is nothing for big pharmaceutical companies to make. These kids are like human experiments. It is all trial and error.

Let’s bring light and awareness to this condition and help kids get a PROPER diagnosis and begin proper treatment. I don’t want another family to deal with everything H has.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Reflecting on an Anniversary I Would Rather Ignore

Reflecting on an Anniversary I Would Rather Ignore.  It has been 5 years.  So much is the same, yet so much has changed.

But, on this day,

Dys- Learning Disabilities

Our Lives Changed Forever

Anniversary I Would Rather Ignore.

What began as a somewhat normal day.

Turned into……

A nightmare.

Get up at 8:15 am

G got H up and ready to eat breakfast.

He ate normally.

Noticed he was a bit needy.

He wanted to be in my lap, at all times.

He was a bit whiny.

The boys saved me and took him to their room to play with Legos.

That lasted for 10 minutes.

I kept hearing N say “buddy, you are not in trouble…why are you shaking and screaming?”

I called him back into the dining room.

We snuggled.

He still was throwing a fit.

I had him sit on the step to calm down.

As he shook, he cried.

I told him to stop shaking and he could get up.

He stopped.

He ate lunch.

N put him down for a nap at 12:30

We were all relieved because we would have no screaming time.

At 4:15, we got him up.

He was carried downstairs (as normal) and put in my lap.

We snuggled until he woke up.

I told him he needed to sit on the potty (5 steps away).

I put him on the floor.

He screamed.

He Fell

I thought his legs were asleep, so I picked him up and rubbed his legs.

After about 5 minutes, I put him back down to go to the potty.

He fell again.

Concern began to enter my throat from the depths of my toes.

I had N go across the room (about 10 steps away) and I had H walk to him.

He wobbled like he was drunk, cried, shook, and fell.

A Year Ago Today

That’s when I knew……

Our lives would be forever changed.

Please pray for a miracle.

Romans 4:18a “Even when there was no reason for hope, Abraham kept hoping—believing….”

Romans 4:20-21 “Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever he promises.”

Jeremiah 29:11 “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

2 Years Ago Today

He walks, unassisted.

We had our wheelchair ramp removed.

He can ride a tricycle.

Most of the time, he can feed himself.

He struggles with this speech.

Also, with behavior.

Wobbly legs, but better.

Shaky arms/hands are still troublesome.

He runs.

The Meds are working.

God is good.

We have come a long way, but there is still a long way to go.

 

 

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

The Prophecy and The Call

The Prophecy and The Call

The Prophecy and The Call. Last December, we were at church and getting ready to worship. We have been church hunting for a while and landed on Christian Fellowship. Honestly, we knew the pastor and his wife, as well as a few families. We had not been going very long, but it was different than what we were used to attending. This was originally written on June 21, 2017.

People Watching

Before service started, there was a welcome, and then our pastor called up a man because he had a “word” to give some people in the congregation. We have learned that this is somewhat normal but still very abnormal to our family. We were not used to that. So, we sat and watched this man pace back and forth in front of the congregation.

I am a people watcher/reader, and the thing that caught my eye was that he never opened his eyes when he was pacing or talking. He kept touching the insides of his hands. You could tell that he was uncomfortable but obedient. He said that he had had this word from the Lord. Also, he wanted to make sure that it was from Him and not from this man’s flesh. However, he realized through his sleepless nights that this was from the Lord, and he had to be obedient.

The Word

He said he had a word for someone in the congregation, so we sat, listened, and watched him pace. He made his way down the aisle we were sitting on and stopped in front of Big Daddy. I felt like all the oxygen had been sucked out of the room, and my mind was whirling. He asked Big Daddy to stand up. I looked to the altar, where our pastor was standing, and he gave me a look, a nod, and a smile that it was okay.

This man, whom we had never seen or met, told Big Daddy to hold onto his hand. Big Daddy is not a tiny man, and his hands are ginormous, so when he stands, he is noticed. This man said that the Lord was telling him to “Hold on. Hold on tight to the rope and do not let go. To trust and hold on tight.” I felt an energy move through me, and tears flowed freely. This was strange because I don’t usually cry or get swept up in my emotions. The moment was fleeting, but the air was thick, and I knew, in my soul, we were in for a ride.

Come the beginning of 2017, so many things happened.

My daddy had quadruple bypass surgery. Then, my niece was sentenced, and my nephew was close behind her. My daughter went to military school due to her behavior. Also, we had a family issue involving another baby that was devastating. Oh, let’s not forget my oldest daughter called off her engagement. She was downsized at work. We were also fighting with insurance companies for my son’s needs surgery. Add that to my Lady getting sick. Then, the straw that broke the camel’s back happened. We were reminded to “hold on” throughout the first six mths of 2017.

Even More

Big Daddy and I tried hard to win a case during the incident involving a family member. It was simply out of our hands. We knew what we could do to help the situation and were willing, but it was not our call. As I spoke to a friend, she said I needed to “hold onto hope.” She also noted that the Hebrew meaning of “hope” is “rope,” so hold onto the rope. I caught my breath, texted her back, and asked her who had told her that. She said it was a word from the Lord to me. I asked her if she knew the man who had said the same thing in December, and she did not know him. That is twice the Lord has said to “hold on.” I felt like we had held on pretty well.

My Sister

Then the call came. My sister called me on Tuesday, June 6, 2017. Now, she rarely calls me on a Tuesday. We’ll talk on Monday 🙂 I asked her if everything was okay, and she said she woke up to an odd text. She said it was from a friend, a former neighbor, that she used to walk with around her neighborhood. That friend said that the Lord placed my name on her heart and that she was praying for me. I have never met, spoken to, or even seen a picture of this woman. She knows me from what my sister had said, and I’m sure I wasn’t the topic of every conversation, although I am awesome like that. I told my sister I did not like that, and that meant that something was fixing to happen. My sister told me to take it as a blessing, but I was unsettled.

Daddy

After he got sick, H and I spent almost two weeks in the hospital. I missed my family, was tired, and was over it. The doctors had told me 1005 things, and none of it was good. Thankfully, one day, my sister (H’s Mamaw) came up to give me some respite on MRI day.

She came in and handed me my flatter than a flat pillow, my granny’s quilt, and a gift from my daddy. Again, I am told to “hold on” in some form or fashion. I carry that with me to this day. It reminds me that my heavenly Father and my Earthly father love me and know it will all be okay!

 

 

Depression, Medical Issues, Opsoclonus Myoclonus Syndrome

My Hero and His Sidekicks

My Hero and His Sidekicks

This post was originally written in 2018.  This is the story of My Hero and His Sidekicks. After an unnecessary Chemo and IVIG 2-day trip to the hospital (we no longer go to this hospital), my anxiety took over my body. It has snowed/iced while we were 4 hrs away at the hospital. My tribe took over and saved the day.

Fella

My man caught a ride, in the nasty winter weather we had, rode and 1 1/2 hrs to where H and I were stopped because my sanity could not do it any longer after two days of no sleep because of sitting in a hospital room. We got food and chatted the whole way home about nothing and everything. He never hesitated.

Future Son In Law

This boy, who wants to marry the girl in the picture, dropped everything to drive my husband 1 1/2 hrs to where I was. He never hesitated or complained. He just asked how we (meaning the baby and me) were and that he was happy to help. This girl in this picture called me on the way home, made me laugh, encouraged me, and chatted my ear off to keep me from wailing.

My Daddy

This ripe old man made me a strap of leather that says, “Hold on tight to God” He made this for me because he knew from the beginning that I would need something tangible to touch to remind me of Christ (and his) love for me.

My Sisters

She and her family prayed fervently for me and spoke wisdom to me while I had my moment driving on the ice. Even though she was tired, she stayed on the phone with me until I had calmed down.

This other sister, well, I can handle just about anything until I call her and she says “hey,” and then I cry. Her voice soothes my soul, and she calms me to my core. She listens and gets mad at the appropriate parts of my stories. She gets quiet in other parts of my countenance, researches, and prays. God knew what He was doing when he created these people to be in my tribe.

My Oak

This mama of mine…this mama of mine…this mama of mine, there are days when I think I cannot breathe without talking to her 500 times a day. She is my rock. I am so thankful she is a FAITHFUL and driven prayer warrior. She listens and worries; Martha has excellent ideas, is encouraging, and never makes me feel stupid. Ever. She always says I’m a good mama, and I learned from the best.

Peach

This pretty girl shoveled the sidewalk, did and put away ALL the laundry, had all my diffusers going, made supper, and loved me and H when we got home. She watched kids, she delegated, and Peach worked on her homework so she could be ahead. She let me sleep in the next day and fixed dinner plates.

Boo

This boy had the kitchen spick and span before I got home. He shoveled the snow/ice away from my garage door, so we wouldn’t get stuck trying to get in our driveway. Amazingly, he loved on H and me like he had not seen us in years. He makes my heart smile.

Gigi

This girl had her chores done, her exercises done, and her schoolwork done. She also helped unload all the excessive crap we hauled home, and she put it all away. There was no drama, no nothing. She played and calmed H while some chaos was swirling around us, getting things put up.

Catfish

This boy took care of all his chores without complaining, and he did his schoolwork. That is quite a challenge some days, but today he did it. He also goofed up and got caught in a sin act, but he quickly admitted what he had done was wrong and apologized. I’d say that is a win-win situation.

Bro Man

This Bro-man got all his chores done and all his homework done, as well, with no complaints. He is loved tremendously by H. He is his lego man person, and their relationship is so precious. I think I’ll keep him.

On this particular day, it took MY village to come and rescue this weary woman’s soul. I’m so thankful that God perfectly ordained each of these people to be in my tribe and to love me and H so well. God is SO good….all the time. I sure do love My Hero and His Sidekicks.

Medical Issues, Opsoclonus Myoclonus Syndrome

Little Lies Along the Way = Fear Amongst Children

Little Lies Along the Way = Fear Amongst Children

Little Lies Along the Way = Fear Amongst Children. Before I move on, I want to say I have MAD respect for nurses, nurse’s aides, child life people, and all the other “worker bees” in the hospital.

Respect.  These are fantastic and under-appreciated people.

With that being said, I have learned a lot of things over the last ten mths of H’s illness. I know the heart behind these statements. I see the ease these sweet nurses are trying to give these kids. Yet with my kid, you aren’t helping much.

Things We Heard

  • Let’s give your arm a hug (preparing to take bp)
  • Let’s clean off your germies (preparing for an IV)
  • It isn’t going to hurt. We are just going to put a straw in your hand/arm (placing the IV)
  • We are going to go downstairs, and they are going to give you a special medicine to help you take a nap (putting under for sedation)
  • Let’s tickle your armpit (taking temperature)
  • Is there a bunny rabbit in your ear (checking ear)
  • Let’s see if you have a heart (checking heartbeat)
  • This is going to squeeze your arm just a little bit (tourniquet for IV)
  • This is going to sound like a rocket ship (the numbing thing that scares the crap out of me)
  • Let’s give your arm a drink (flushing the IV)
  • Let’s take some happy juice (something to calm them before sedation)
  • We are going to go downstairs, and you can take a nap while we take pictures in a giant donut (MRI)

In the beginning, these statements I got.

I understood. I accepted. I even played along until I began seeing small H changes and extreme fear. He resisted “hugs,” afraid of loud noises (rocketship), would spit his water out when he drank from a straw, and when we came to the hospital, he would FREAK out.

If I had a rare hospital visit or stay for my kids, which I have had in the past, I wouldn’t hesitate to do this.  For minor things, I get it.  Saying these things helps kids overcome their fear.  Yet, when you have a child who is in the hospital all the time, it doesn’t work.

H stopped using straws.  He stopped drinking juice or most liquid.  H didn’t want to ever eat a donut even if he saw me eating one.  He resisted hugs.  Tickling him is a thing of the past.  He associated all these good things with fear and hospitals.

I know I come across as this hard mom who is using too technical terms with my 4 yr old, but this is his life. Hospital life is his new normal. Hospitals. In and out of hospitals and doctor’s offices. I have changed my tune during the past few doctors and hospital visits. For instance, this morning, H had to have an MRI done and a spinal tap.

Child Life

Child life came upstairs to talk and play with him until he was sedated and went back for his procedure. They brought this fantastic doll with a hospital gown, markers to draw on his face and pretend medical equipment so he could play with it.

They began using those terms, and I kindly told them I used accurate terminology with him. I discussed with them his irritational fears over things, and because of my lack of knowledge and the previous nurses trying to put him at ease, with what I’m assuming they have learned, we have changed how we deal with things. I also explained that he likes to be called Kid.

The Doll

So, we got out the doll, and I taught the Child Life people and the nurses how we do things. We first drew a face, hair, glasses, freckles, belly button, and chest/back hair on his doll. Then, I drew some veins on his hand. I showed him his veins and my veins. I talked to him about the IV going in and what it does. The funny thing is he knew what most of the stuff did because we have talked about this so much.

We took a wipe and cleaned the area. We counted to 5 and then “inserted” the IV…we even used the same tape they used on him. We flushed Bob’s IV when H got his IV flushed. We even put the sterilizing cap on the end. I covered everything I could think of on Bob.

Astonishment

The ladies were in awe of how H responded, how much he knew, and how I chose to handle things with him (I understand other parents using the above terminology). I explained to them that he has a life-altering condition, and this is now a part of his life. I wanted to take the fear out of the unknown and normalize his situation for him. To take the worry away, I want him to be a student (even at this age) of what is going on in his body. Doing that gives him some control.

This has been a scream-free hospital stay. H has been compliant, polite, and confident. I’m so incredibly proud of him. I cannot even describe how much this baby inspires me to continue to run the race looking forward.

 

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Spotting the Zebra

Spotting the ZebraSpotting the Zebra

Here we are, Spotting the Zebra. Dr. Ehert has been so good to us. So thorough, and she even fielded questions from my sister, H’s grandma. She wanted us to be discharged to Frazier Rehab, across the street, for an indefinite time.

I want to go home, even for just a night.

I realized I needed to see my kids, my kids needed to see me and H. I needed my shower and my bed, even if it was just for a few hours. We had declined the offer to go to Frazier, and I set up speech (he had lost some of his speech), Occupational therapy, and physical therapy. If the doctors were not satisfied with his progress, we would go.

The Hospitalist said that there were really no more tests to run and that we could go home because A) they had no clue what he had, B) there were no more tests to run C) I begged. So, without a diagnosis., we hustled and got out of that hospital. We drove for about 3 hrs and then my phone rang. It was Dr. Ehert. She said that we left without seeing her. I explained that we saw Dr. Bhalla (her fellow) and that she cleared us to go.

Then there was a pause.

She asked me how far out of Louisville we were. I told her I was about 3 hrs from there and a 1/2 hour from home. She explained so gingerly that one of his tests (1 of about 200) came back positive and that we needed to turn around and get back up there to start steroids. I asked her how urgent it was and if I could go home for a bit, and she was hesitant.

She said the sooner they start it, the sooner he could get better. The treatment was to last for five days. She never mentioned a diagnosis, but her voice had a definite concern. I told her that I was going home. There were things I needed to do like getting a shower, seeing my kids, and sleeping in my bed. Ultimately, I would be happy to leave in the morning as long as his life was not in danger. That is what I was going to do. I had to mentally prepare myself to be up there for that long again.

We got home, and it was sweet.

He was so excited to see everyone, and everyone was excited to see him. I jumped in the shower and blew off all that nasty hospital funk. It was glorious. I slept so well that night. About 9 am the following day; we headed out again. I felt more prepared. I knew what to pack and was mentally ready. We got up there, and we could bypass the ER and go to quick admitting. They were expecting us. We met up with the beloved IV team again, and we got an IV started for him and Superman 🙂 They told me they would give him high doses of steroids for the next five days.

Steroids are supposed to make you eat and make you a bit irritable. I could not get this child to eat anything. He wouldn’t even eat a cookie. He did sleep some, but it was restless. After three doses of steroids, he could stand on his own and maybe take a step or two. His tremors lessened. His voice was not as shaky, but his eyes were everywhere!

Phone Call from the Beach

Early the following day, at 1 is, I finally shut my eyes for a moment, and it comes to the nurse. She said that I had a phone call. I think, “who on earth is calling me, on a nurse’s cellphone, at 1 am.” It was Dr. Puri. He is a pediatric neurologist who was calling me from Myrtle Beach. I asked him why he was calling me while he was on vacation, and Dr. Puri said he wanted to ease my nerves.

He is a phenomenal doctor. I have been told that he is well-loved and well-educated and has seen some bizarre things. There was an assurance that there was no worry of childhood MS, which is what I thought he might have because of his symptoms. He said because no lesions were found anywhere. It is doubtful that he has this, he said he believed it to be another autoimmune disease, and he assured me that they, as a team, would figure it out.

New Neuro

In comes Dr. Sweeney. I came close to dismissing him because he looked at my son’s age. I thought that he was a youth volunteer. He said that the team had assembled and discussed our case. They wanted to run more tests but felt pretty confident in the diagnosis. He kicked every other doctor off the case because this was strictly a neuro case, and there was no need for a bunch of Drs telling me their opinions and interrupting our day when they didn’t need to.

We did another MRI of his brain and spine (with contrast) and another CT scan of his chest, abdomen, and pelvic region. They knew what they were looking for now. We did a follow-up urine test, and they “attempted” to draw blood while he was asleep…6 sticks later, they still could not get enough blood. At that point, I put my foot down and told them that if ANY IVs or blood draws were necessary, ONLY the IV team would do this for me.

All Tests Were Normal

Once all these tests came back (normal, I might add), Dr. Sweeney stopped the steroids (he had had eight doses of them), and he started him on IVIg (immunotherapy) for about 6 1/2 hrs. He said when that was finished, we could go home. There was nothing else for them to do or any more tests, at the moment, that they could do. I could do the same thing here as they could there.

They did want me to take him to Frazier for a couple of weeks. I explained that we already had therapy and equipment in place, and they were satisfied with that for now. We would readdress it when we came back for our follow-up appointment. All tests were clear except for high pressure with the spinal tap, and that test was positive for Oligoclonal Banding.

Spotting the Zebra

Dr. Sweeney captured the rogue zebra in a not kind of way. He thought that he had misdiagnosed him with OMS. Sadly, he felt he had Spinocerebellar Ataxia. SCA is confirmed through genetic testing. Whereas OMS is a clinical diagnosis. It turns out that he does not have SCA, and he does not have ATLD1. We are back to the OMS diagnosis.  

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Is it a Rogue Zebra or Something Else

Is it a Rogue Zebra or Something Else

Is it a Rogue Zebra or Something Else

We got to the Norton’s Children’s Hospital ER, and I realized that the calmness I once felt was now moving into the “they are paying a lot of attention to us” moment and “oh crap.” Nurses were moving quickly. We were seeing attendings and not interns or residents. My mama’s gut was screaming, but my outer shell was trying to convince my inner shell that things were okay, and they were overly attentive.

 

All Eyes Were On H

 

Without much of a blink, I had the ER attending, the neuro attending, the peds attending, and there was one other one, but I could not think of who that person was. They got him in a gown. I blinked, and the next thing I knew, they were putting in an IV, drawing vials of blood, and testing his urine. It all happened so fast.

 

Explaining the Last 2 ER Visits

 

When I talked to the attendings, I explained that we had just been to Vandy and what they had said. I told them I might be overly cautious, but it seemed H was getting worse. All I wanted was two doctors, two different hospitals, and two different states telling me the same thing. Once that was done, I would be good to go. The last thing I wanted to do was to stay.

 

Dancing Eyes

 

I blinked again, and when I looked up, H’s eyes were dancing all over his head. It reminded me of one of those reptiles with a third eyelid. Quickly, I got up and hung my head out the door for the attending. I stood, where my face was not visible to H. Before that moment, I was cool as a cucumber the whole time. Sadly, when that third eyelid thing had to be fixed, that scared me. That’s when things started moving a bit faster.

 

Not a Normal Mama

 

I am not the type of mama who always is at the hospital or doctor’s office for every snot rocket, complaint, bent finger or toe, or even blood gushing. I do not subscribe to that in my life. If mama is quiet and the kid is quiet, things can get done and assessed. I told these people that. I apologized for even taking their time because I was sure that everyone would agree.

 

They disagreed.

 

Not even in the slightest.

 

A 6-Day Stay

 

My previously healthy 3-year-old was poked, prodded, sedated, and infused. I was alone (Big Daddy was home with the other kiddos), with a 3-year-old, surrounded by doctors, residents, interns, students, and nurses. There was not one person who would give me a straight answer. I finally cornered one of the doctors, and I told her I was a nice person. I tolerate it a lot. I am also a forthright person, and I do not beat around the bush. The one thing that can get a bee up my drawers is when people are dishonest or dancing around things for me.

 

I understand that they do not have all the test results. I know that they do not know, for sure, what this is. They know what tests they are running, why the people are running them, and what they are ruling out. That is the stuff I want to know. I will not lose my cool. There will not be a time when I will panic, faint, cry, or scream. My job is to be a student of whatever is going on.

 

Student Doctor

 

One sweet little student doctor, who looked like my son’s age, stepped out of his box. He got down on H’s level. This sweet man played with him, connected with him, and was genuinely concerned about him and me. There were days when he would stop by and ask random questions because he was going home and researching. Out of his graciousness, he made me a list of all the tests. Which tests were pending and which had results (and he gave me the results).

 

Also, he took the extra time to write down what disease each test was for, what was ruled out, and what they were looking for within the tests. That list became gold to me. Every time a nurse came in, she would check to see if a specific result had come in. This is what I needed. The list calmed my soul, and I felt empowered and in the loop.

 

The Hospitalist

 

There was another doctor; she was a pediatrician and was the hospitalist for the week. She slammed me between the eyes. This doctor said that he would not get better and that it was an autoimmune disease. They could not pin it down, but the fact that every single day, he was getting worse and much weaker. She said that I needed to see the gravity of the situation. I need to make adjustments at home. I needed to set up therapy. They wanted him in Frazier Rehab for an indefinite amount of time. I was going to be the one who had to feed him. We had to get him fitted for a wheelchair. What was happening was our new life, and I needed to prepare myself.

 

Time for a Meltdown

 

I believe that conversation was the first time I truly had a meltdown. Amazingly, I did not do so in front of all the doctors. I waited until they left. Before my moment, I got my son watching a movie. Then, I stepped into the bathroom and called my sister, H’s grandma. That is when I lost my composure. I could hear H in the other room sweetly saying, “mama, don’t cry. Come out of the bathroom and don’t cry.” I came out. Then I washed my face. Next, we watched Cars for the thousandth time.

 

Choosing Joy

 

I purposed not to let this dictate his life or mine. Adjustments? Fine. I can do that. Therapy? Fine. I can do that. When the doctors came to do rounds again, there were about 12. All of them were timid around me. They would not look me in the eye. I guess they thought I was going to break down. There was a moment, and now my moment was over. I told them that even in times like this, I choose joy. According to God, this would not defeat us. OMS was just a part of our story.

 

I explained that these doctors would see something similar in their future. When they do, they will remember H. Hopefully, they will know what tests to run and what to look for within his body. Also, to realize that God will be glorified. The tone in the room changed. They began to tell me they were praying for us and encouraging me, saying that God can still do miracles.

 

Next, we meet our Neurologist team. 

 

 

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

A Journey of Healing

presentation1

A Journey of Healing

I will only discuss this last leg of our journey as we step out of our finite “reasonable” box and into infinite faith.

Hope

Our journey is hard to explain without sounding like I live on another planet. So trust that God is good even when we don’t understand. That with Christ, all things are possible. HOPE. Here is a taste of what the Lord has been showing me.

Several years ago, my friend shared the story of her daughter’s journey with Lyme disease and how this place, this whack-a-doo treatment, and faith saved her daughter’s life. She tried to explain it to me, but I had no clue what she was talking about, so I listened, asked questions, and rejoiced in her daughter’s healing.

I have mentioned this place to several friends, who struggle with autoimmune issues, and I just put a bug in their ear, and then I give them Les’ number. Take the middle man out of it. I praise Jesus every January because that is when Les and her family stepped out on faith and tried something different than traditional medicine.

June 6, 2017

When H woke up from his nap on June 6, 2017, our lives changed forever. Our first dx was from a local hospital. In reality, a chigger should not EVER go there, but whatever. They diagnosed H with Strep, though he tested negative. “Give him these antibiotics, and he will be fine in 10 days.”

Uhm, did you get your degree from a Cracker Jack Box?

He cannot walk.

Hospital 2

We left and immediately drove to a children’s hospital out of state. We stayed there for several hours and then got the second dx. They said he had Cerebellitis. It is a common diagnosis when a child presents with the symptoms he presented with when we got there. The dr said it would run its course (virus type thing), and he should be better in 10 days.

Yep. That did not sit well with me.

 So, we made some calls to a friend who worked for a Neuro. Another friend has boatloads of experience with Neuros because her daughter has TM. Also, we talked to our parents and my sister (H’s Mamaw). Then we decided to take him to a different children’s hospital and see if that neuro agreed with the first neuro.

Hospital 3

We came home, spent the night, and then I got up early with H and headed to another hospital, alone, genuinely thinking this neuro would agree with the last neuro. Yep, that didn’t happen.

That was the beginning of our worst nightmare.

It is so easy to praise God when all is good in the world. When things are running smoothly, and all things are moving and grooving in a good flow. I picture my family and me sitting around a campfire singing Kumbaya. Then, you see your fire starting to go out, and it is getting cold outside, and you are frantically searching for anything and everything you can burn to get that fire back.

Before you know it, a bird flies overhead and pees on your ember. Your flame is gone, and you are sitting there, cold and in the dark. You think it can’t get much worse but have eaten that last s’more. Now you have no heat, light, or food. It is doable, sucky, but doable. Then the monsoon hits, and you feel like you will never be out of this space, and your fire will never come back.

Offical “Clinical” Diagnosis

Our official clinical diagnosis was made at another hospital. Sadly, there is no definitive test you can do. There is no amount of MRIs, LPs, blood work, X-rays, or EEGs. Nothing can officially say this is what you have. It is a combination of symptoms and what they equal up to after you test for everything else on the planet.

Opsoclonus Myoclonus Syndrome was 1 in 10 million. Once this diagnosis took hold, I did TONS of research. I joined a wonderful online support group and received encouragement and a wealth of information.

Protocol by Dr. Frank Pranzetelli

We started high-dose steroids while hospitalized. We also started our first of many IVIG treatments. IVIG was done monthly. Closely following coming home (in the hospital for about 12 days), we start Rituximab (a type of chemo). The total on that was about four treatments. Since those were not working, we moved to add in ACTH. Acthar (ACTH) is a shot that we give him daily. It is another type of steroid. We did this for about three mths. All this did was to MAGNIFY his rage, insomnia, and severe OCD tendencies. My sweet little boy was not there anymore. He was like a raging animal that always stayed in a fight or flight mode.

Second Opinion

I was getting a second opinion without permission! Dr. Lightner answered so many of my questions. She was open, honest, and forthright, and in-my-face wording helped me immensely. Dr. Lightner was a breath of fresh air, though I did not care what she said.

 She stated that H’s condition was more progressive. Dr. Lightner did not see the ocular flutter, which, to her, ruled out OMS. She wanted to run all the tests again. The previous test had been a year ago. Note that she was wrong. He did have OMS. H was assessed correctly and diagnosed at UPMC in Pittsburgh by the amazing Dr. Kavita Thakkar.

Part 2: Have You Ever Tried to Nail Jello to a Wall?

 All tests returned the same, and while he was at the hospital, the ocular flutter reappeared, making her believe that it was OMS (confusing, I know). So, in the end, we felt confident in this “clinical” diagnosis. She said, in her opinion, she would try the protocol again, but that is something I needed to discuss with our regular neuro, as she was confirming a diagnosis.

Zebra versus Okapi

In the medical field, a ZEBRA means an unlikely diagnostic possibility. It comes from an old saying used in teaching medical students. These students are taught how to think logically regarding the differential diagnosis: ‘When you hear hoofbeats, think of horses, not zebras.’ H was not a horse. We THOUGHT he was a zebra. Then, we discovered that he is NOT a zebra. He is an Okapi (incidentally my all-time favorite animal). They are incredibly rare.

 Unconventional Treatment

As we were finishing up an “unconventional” treatment plan for our son, we decided to give our family a bit of respite—SonRidge Health and Healing Center in St. Augustine, Florida. Dr. Marty Monahan took over the business with Jack Garvy retired.  

I have 11 people in my immediate family. Everyone is going in a different direction. We have one struggling with depression, one planning her life, and one who can’t keep her head above the waves. There is one who is ready to launch, one whose deficit and valley get larger and larger, and one who is stepping into puberty. Then there is the one who can either walk or not walk based on any given day and circumstances.

Add that to a mentally exhausted mama, an overworked daddy, and a strained marriage, and you see that we all needed new scenery.  5 Days After my Son’s Treatment.  

This Happened: My Boy is WALKING

My Boy is WALKING after three intensive days of therapy. I can’t even adequately verbalize my emotions. Amazingly, I watched him stand up by himself. As a result, this was a moment I will never forget. Then, because He is incredible, he RUNS to the ocean. I’m so thankful that I caught that on my camera. I got the best video; ironically, my camera attached a still shot. Yes, it is framed in my house. H, running to the ocean, carrying a stick. Fearless, confident, and strong. I’m amazed at God’s goodness. We still have a long road to go. Realistically, this is an unknown condition. God has healed him. We are just waiting for the complete manifestation of that healing in his little body.

Let’s Absorb

My Boy is WALKING!!!!!!!!!!! He is still shaky, but he is out of that damned wheelchair. Honestly, he does not even need the gait walker. He gets tired quickly, but when he is up, he runs. It is a miracle from God. I know that the stripes of Jesus have already healed him. Today, I have seen with my eyes instead of hearing with my ears.

Meet My Okapi Miracle

What a miraculous moment. God is always good, yet when you see your son walk unassisted for the first time in MONTHS.  You CHOOSE to give God the glory because He is the only one who deserves it.  God is writing H’s story. He has been writing since before He created the Earth.  I get to sit on the sidelines and enjoy the view.

He has all the provisions in place for H. For what he is dealing with and all trials that he is currently going through.  God is good. He is faithful.  Our family will heal. Our son WILL heal.  He is strong, kind, brave, and good. I will hold onto this moment for the rest of my life. My heart almost explodes every single time I see it.

He just got up, running to the ocean. The ocean is his haven and his safe place. The bathtub, not so much. The shower, not on your life. He is not even fond of the swimming pool.  When you see the ocean’s vastness, one would think he would be afraid. 

Fear. It is not in this boy’s vocabulary regarding the ocean.

He is simply fearless.

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

My Ache of Reality

Before He Got Sick

My Ache of Reality

 

My Ache of Reality

In My Ache of Reality, my heart physically hurts. There are moments when I see myself going about my day. Then, all of a sudden, tears begin to flow freely. I am not in control of this onset of emotions, sadly. If I were in control, I’d stifle those suckers instantly. It is uncontrollable and unexpected. I do not enjoy these moments.

 

H is better, for the most part. He is still walking most days. There are some foods that H can feed himself. There are days when he can hold a pencil (with assistance). On a good day, H can sit on the potty (almost by himself). All of these things, he can do part ways. Also, there are things he can do, all the way, occasionally. Every day is a day and every day is different. I never know what to expect day in and day out.

Remembering

What spurred these emotions on was sorting through my external hard drive one day. I organized the 10s of thousands of pictures I have had since 1994. Looking through my photos/videos of 2015 and 2016, I began to feel the heaviness. See, in November 2015, H moved in with our family.

 

He was “normal” that morning, on June 6, 2017. Then, after lunch, he took a nap, and our lives changed forever. I remember calling my sister (his Mamaw) and saying, “Kim, there is something wrong with the baby. He can’t walk. We are headed to the ER.” She met us there. From that moment on, it was a whirlwind for the next two weeks. I had almost two years of him being a healthy, typical little boy.

 

I Don’t Remember

 

Those healthy days, I don’t remember. How sad is that? He does not remember it either; that is even sadder to me. This realization cuts me to the core because I do not know what our future holds; on the flip side, I know Who has his future. It can be so scary to even think about. Will he ever walk without assistance? Will he ever feed himself? Dress? Do schoolwork? Go to college? Have a family? Hold a job? I know he is only 4.5 years old, but time marches on now, doesn’t it.

 

I find myself questioning God and the why’s of it all. H had already endured *so* much in his little life before coming to us. He saw so much hurt, pain, violence, neglect, and now this. Why can’t he be? Why can’t he live everyday life? What more does this baby have to go through?

 

Then, I hear this one question rolling through my mind, like on a carousel.

“If I never heal him, this side of heaven…will you still love me?”

 

That question is so easy, yet so hard. It is easy because, of course, I will still love Him. He is my Savior and my foundation. The knowledge that He is my Alpha and Omega is overwhelming. I want my son to be healed, this side of heaven, and to be okay. I desire to see him have a full, healthy future. The reality is, is I don’t know what his future holds, and it makes me angry.

 

Anger is secondary to fear and sadness. I fear that I will lose my son. There is a fear of people making fun of him, him getting hurt, or having to go back to the hospital. I am sad because there is no treatment. There is no medication, no protocol, no help, or knowledge available. Fear and sadness could overwhelm me if I allowed them to. In having a propensity to depression, I have to be mindful of my mental state in all of this.

 

Anger

 

I’ve been super angry with Jesus through all of this. My love for Him has not changed, but I am mad (remember, fear/sadness). Last night, we had a meeting…Jesus and me. This meeting happened after Big Daddy prayed over me, and I was fixing to go to bed. There was a lot of yelling, mainly (entirely) because I had to get this all out.

 

When I came out of the bathroom, I saw my still son, sleeping peacefully. I sat by his bed and held his little hand. There were no words spoken and no thoughts in my head. I sat there in silence, staring at him and holding his hand.

The Ache of Reality

There was so much said, so many tears that fell, and finally, peace. I can officially say, not just with head knowledge but heart knowledge, that I will still love my Jesus. Being alive has brought together our family in a way I never dreamed it would come together. Our tribe has come together and rallied.

 

There is a relationship between my brother and me. That never existed before. The love my brother has shown my baby is mind-blowing. My sister and I function as a unit instead of separately. That began before H even moved in with us but has grown stronger by the day. My other sister has faithfully helped by providing pull-ups to being a massive prayer warrior. My parents…I can’t even. The support and love that has been shown affect every fiber of my being.

 

H has shown people perseverance in the face of pain and uncertainty. It melts your heart when he smiles after IVs, chemo, IVIG, ACTH shots, traveling for hours/days, and extended hospital stays. There may be a moment when he cries, but then he tells whomever, “thank you.” Amazingly, he has shown grace through his misdiagnosis and tenacity in his ability to compensate for his deficits.

Hope

It has been prophesied over me, my family, and H’s healing. I have learned that, in Christ, H is completely healed. The power of my words and the words that surround H is just that, mighty. I can hear the medical truth yet still know that he is healed. The Holy Spirit, in me, allows me to pray and thank God for the healing He has already done for H. HOPE is the keyword in our journey. I have HOPE in the circumstances that we are going through. This HOPE can only be found in the arms of my Jesus.

 

I’m thankful for the people that speak that healing into existence. That healing is Truth from the Almighty. They remind me of what the Lord has shown them, and they tell me. These are the words that I need to hear because they come when I feel like hope is dwindling.

Snuggling

As we snuggled in bed last night, I asked him if he would be better. I didn’t allude to his illness or anything else. I thought he would respond according to his behavior because it has been less than stellar. He looked up at me and said, “Yes.” He said, “I’m going to stop shaking.”

 

H has hope. Therefore, I have hope. We know on Whom our HOPE is built.

My Hope is Built on Nothing Less

My hope is built on nothing less
Than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

His oath, His covenant, and blood
Support me in the whelming flood;
When every earthly prop gives way,
He then is all my Hope and Stay.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

When He shall come with trumpet sound,
Oh, may I then in Him be found,
Clothed in His righteousness alone,
Faultless to stand before the throne!
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Time to Get Over Ourselves

Time to Get Over Ourselves

2 Day Hospital Stay

In this post, Time to Get Over Ourselves, H, A, and I have been at Vanderbilt Children’s Hospital for two days for his infusion. This is the hospital that misdiagnosed him the second time. Now, after 2 yrs, we have found a specialist who has seen his condition.

Now, she has not seen a lot of cases, but at least some. She is willing to learn as we go, and she talks WITH me, not AT me. The last time I checked, I was H’s expert. She respects that, and I appreciate that.

Infusion Time

This is our first infusion at this hospital. It is pretty different from the last three hospitals we have had infusions in. All three other places (Norton’s, UK Children’s, and UPMC) have done one full day of IVIG. We have always had a private room and meal services. That was nice.

Here, however, is a WAY different ball of wax. We are in the cancer infusion section. It is one large room with about 12 of those hospital reclining chairs. Each person comes in and grabs a seat. There are private rooms, but that is for different cases.

As I Look Around

As I look around, I see these children that have ranged from bitty babies to 18 yrs old—everyone here for chemo. I have seen entirely bald children, some with sporadic hair pieces, some with just thinning hair or bald spots, and some that have not lost their hair.

Parents, they are tired. They are overwhelmed. These parents have bags full of everything their child/ren could need/want during their infusion. I have seen a range of emotions, from irritation to anger to frustration to intense sadness. My heart aches as I wonder which of those categories I have fallen into.

Sweet Mama Precious Baby

This one sweet mama, her daughter, looked to be about 3. When we got here, the little girl was wallering in a chair that was too big for her. Then, mama got in the chair, and this baby melted into the warmth of her arms.

She slept until she didn’t. Once the meds hit, this little girl cried, screamed, thrashed, and more. The mama tried to get the daddy to hold her, and this little peach did not have it. She was angry at her father and did not want him to touch her. This blessed little person wanted her mama, but she didn’t.

Calm in the Storm

Finally, a nurse took them to a private room, where she continued to scream for 45 minutes. My heart ached for them all. Eventually, she fell asleep, and the mom quietly retreated out of the room for some untainted air.

I approached her with kind eyes and a warm tone when she came back in. She apologized if her daughter disrupted us. That is the last thing I wanted. I gave her tips on what we do when H rages. The things that worked for us during his hospital stays. We laughed together quietly. She was able to express herself freely because I got it. I understood. We are all in this together. Honestly, this is not where anyone in this room wants to be.

Macarena

At one point, the nurses started clapping and singing the Macarena song. It was something fun they made up to sing to a patient who had completed their chemo treatments. All patients sang, clapped, and smiled at this victory. A and I fought hard not to have a complete come apart. What a beautiful moment.

Emotions of the People

I’ve seen smiles, perseverance, tears, victories, triumphs, and frustration. The nurses work hard to do their job, and they do it well. My heart aches that we are even here. Yet I know that cancer is not what is attacking H’s little body, and for that, I am thankful.

Completely overwhelmed.

Stop complaining about things that are SO minor. Honestly, the mundane crap and trials of life are just that; mundane crap. It will not matter in a week or a month. Seriously, we all need to get over ourselves. These things we get irritated over are nothing compared to what I am looking at now.

Wanna see strength?

Sit in the cancer ward of the hospital. I just saw a 6’2″ man walking with his 18 mth old balding son. This tiny fry marched confidently to the toy cabinet. Daddy opened it and crouched down as he picked something to play with while he had his treatment. I could not hold back my tears.

Time to Get Over Ourselves

Love more. Forgive more. Hold your family close; even if you don’t like them, you must LOVE them. Stop being petty and snippy. It may take a while to absorb all I’ve seen fully. There is a lot that I need to say to people who have hurt me or whom I have hurt.

Stop talking about living a simpler life, loving more, not holding grudges, etc. Do it. People can say or “post” what they do all day and twice on Sunday. That does not mean they live the life they say they live.

Stop talking. Start doing.

This.

This place is where the rubber meets the road for me. Just as I think all people need to visit a developing country to make them appreciate life more and what they have. This place is somewhere everyone needs to see to humble themselves and be grateful.

Ideas

Donate your time, money, and gently used or new toys to a children’s cancer ward. They need it, and it brings them joy for the time they are here. Thank a nurse, dr, EMT, firefighter, police officer, or military person/family.

My heart is changed.