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.

 

 

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.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

The Key to a Successful IV

The Key to a Successful IV

The Key to a Successful IV

Here is The Key to a Successful IV. Friends, neighbors, countrymen, lend me your eyes. We have figured it out! A couple of months ago, H got a slight cold. In a healthy child, that would look like a low-grade fever, snot, cough, or just feeling yucky altogether. In an OMS child, however, it is a different ballgame.

Flare-Up 101

A cold spells trouble when you have a child with OMS, which you likely do not because it is 1 in 5 million:

  1. I noticed his eye turning in slightly.
  2. I saw a slight cough.
  3. I noticed he couldn’t hold a pencil, fork, or work legos.
  4. He would be standing up, with nothing touching him, and he would suddenly fall over.

This can last for the duration of the fever, or it can last for an extended period. Not every cold (God willing) will lead to this, but it likely will. So, tremors began, and fear set up camp in my spirit.

ER Visit

We were not due for IVIG when he got this little cold. Sadly, we get it in the chemo ward of the hospital, so if he has any signs of anything, he can’t come for fear of getting another child sick.

We set off to the ER. His dr was aware, though she made no contact with us during his illness, ER visit, or stay. That will be addressed at his next appointment because that was not okay. Also, I called the ER and told them I was on my way and what was going on with him.

Upon Arrival

We didn’t even get triaged. They quickly went through some basic things and got us into a room almost immediately. The nurses couldn’t even look at his chart because the on-call neuro looked it over. We were very pleased with our ER visit and the diligence and kindness each person showed us.

Decision of Admission

The neuro team decided to admit him for IVIG. The decision didn’t surprise me, but I dreaded the IV part. H has some pretty severe PTSD because of all of this. There are no amount of distractions that can prevent him from screaming his head off. Though, they have tried and tried over the last 2.5 years. It is almost always a nightmare.

The nurse came in, and I immediately apologized for what was happening. She understood and told me not to worry. I told her he was scared of white jackets, stethoscopes, gloves, cleaning stuff, and a rubber band. She smiled and said no problem.

Then Magic Happened

She took off her coat and stethoscope and informed her helpers to do so. As they entered the room, she asked me to watch her and her helpers thoroughly clean and sanitize their hands.

Then, she put in his IV with NO TEARS and NO SCREAMING, like zero. He even watched. It was the most bizarre thing I have ever seen. He thrashes and screams as soon as he is touched. Yet, this time, nothing.

Fast Forward to Not One but Two IVIG Treatments

In the last treatment and this one, I have asked that they not wear gloves. I wanted to see if it was just a fluke. Guess what? It isn’t a fluke! He has not made a sound when he gets his IV in. It is the most fantastic phenomenon ever. Those parents with medically fragile kids will understand how exciting this is for me!

We have our IVIG routine down pat, though it is not our favorite thing to do in the world. I wish he were well, but he is alive, and I will take that any day of the week and twice on Sunday!

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Annual Retesting for Opsoclonus Myoclonus Syndrome

Annual Retesting for Opsoclonus Myoclonus Syndrome

I dread hospital days. Usually, I start getting anxious about a week prior, and then it hits hard the day before. This time, I got a head start on packing, and I would pack light. Last time, I packed too many snacks and clothes. The first time (almost 4 yrs ago), I packed little to nothing for a two-week stay. I have one bag for both of our clothes, a book, and my slippers. Then, I packed my purse and had my little bag of bathroom things, essential oils, and electronics. One bag. One purse.

I’m ready.

Once I’m Ready

Then, I am ready. I have a coke in the fridge, water, and we are rolling. This time, however, was different. First, I was supposed to check in on Memorial Day. Doc said that we should put it off till Tuesday. Okay, fine. Adjustment.

Monday night, I went to do the pre-visit on Telehealth, and it had that I was SUPPOSED to come on Memorial Day. I messaged. No response. I called. No response. I messaged hours later. No response. Are you sensing a pattern?

My Whole Mojo was Thrown Off

Tuesday comes, and I start calling. Guess what? No response. I called admissions, and they said they had him down for coming Monday. There were no orders for him to be admitted on a Tuesday and not come (a long drive for me).

I messaged the office four times. I called three times. Then, I called admissions again. Finally, after my whole mojo was thrown off, we left at about 3 pm. It rained the entire way down, so that was an added fun element in the non-existent sun.

Getting in Our Room

We got settled, and a neuro doctor came in. She was letting me know what was going to be done. Then, we talked about his new or increasing symptoms of rage, OCD (or tics), vitiligo, and other things. I informed her that she needed to look at his last visit and whomever the two neuros were that took his cath out, they were not to get near my son. Her eyes widened.

Of course, this is a neuro I had never met, and she wasn’t aware of the plasmapheresis trauma. Tough. Just tough. I will say that our IV team (the team consisted of 1 person) was unbelievably phenomenal.

Blood Tests and Co-vid Test

He had a lot of blood drawn for several different tests. Also, he had a co-vid test which was HORRIBLE. He grabbed the stick, shoved it up to his nose more, and SCREAMED. Then, he broke it.

Good times.

Luckily, he slept well and was overall good.

Day 2 begins the round of testing.

Day 2

Today, geez. It started with someone scaring the crap out of me at 5 am. I slept on and off between 1 and 5. Well, we are up now. Neuro said that H tested positive for Co-Vid. There is some added fun.

Where on Earth?

I have no clue how this even happened. H has not been symptomatic at all. Honestly, he goes nowhere, so the people (my kids and husband) coming in and out of the house must have brought it in.

I asked for a day two retest, and they did. Guess what? It was positive too. Now, we are on another floor, in complete isolation. We are still getting testing done, but he will be moved to the last on the list.

Lots to Do

He is supposed to have an MRI and an LP (Lumbar Puncture) today, under sedation. If you have sedation, you can’t eat or drink. He is hungry and thirsty, which will make for an unhappy boy. His blood tests came back normal, except his iron is low. That is fixable. All the other doctors will be coming in today. Some stranger is peeking in his window and waving. Quite creepy if you ask me.

Positives and Negatives

Positive: People don’t bother us.

Negative: Co-vid. Grumpy child. Isolation.

Also, a HUGE negative is that we are now being discharged because he can’t be under sedation for 20 days. Bloodwork was done, and we got urine on him. The Rheumatologist and behavioral specialist will see him, BUT the most important thing is the MRI and the LP.

So, we have to come back in 20 days. The fun never ends.

So far, everyone else in my family has tested negative.

Day 3

As you might remember from yesterday’s post, lots of stuff happened. So many delays, a co-vid scare, and a tick on him are the highlights. Mix in being hungry, exhausted, and frustrated, and there you have our first (and only) 2-day stay at the hospital. Let’s talk OMS, shall we?

Opsoclonus Myoclonus Syndrome (OMS) is difficult to diagnose. It is easier when a child has a paraneoplastic type or neuroblastoma. Yet, being idiopathic is just a shot in the dark. Sadly, Vanderbilt has not done as well, in our opinion.

Is it God Speaking?

The 1-day screw-up or the 2-day delay was that God said, “stay home?” Nah, God hasn’t spoken to me in a while (in my opinion, not His). I press on, determined to get an answer with one of my many phone calls or messages.

We get there, and most go smoothly. We get to our room, and things start falling into place. Nurses come in and do their thing. We get the IV going, tests begin running, and questions are asked. You know, all the things. The co-vid test was a NIGHTMARE, but we got it done.

Is He Speaking Louder?

At 5 am, the neuro walked in to inform me that H tested positive for co-vid. I told her it had to be wrong because we had been nowhere. He has no symptoms. She said it was positive and that we were being transferred to the co-vid unit.

Excellent.

They decided to retest him at 530 am. Fun, I know. Regardless of the outcome of that test, the aliens came in and whisked him down to the “red-headed stepchild” ward. I kid you not; that’s what people call it.

My mom called and said, “Brandi, can’t you just go home?” I told her no because we needed these tests. That was my third warning and our second positive test.

In the Meantime

My family, back at home, is getting tested right and left. It’s a lot of people to get tested. Yet, once it was all said and done, everyone tested negative. It wasn’t surprising, and I still questioned whether or not the test was accurate.

Yet, we had an attentive resident who seemed to “see” me. We had a wonderful nurse who put H at ease in every aspect. I ignored all the warnings and second-guessed myself, and we pressed on again.

Final Say

He didn’t just give me signs, feelings, phone calls, and such. This time, He just said, “leave.” The powers that be came in and said there was nothing they could do for 20 days. We should go on home and come back.

That was loud and clear.

On Our Way Home

As I turned down the road home, rain began pouring down. My boy woke from a nap, it began to storm, and the sun’s rays shone down. I prayed for the Lord to give me a sign that all would be okay. I looked in my mirror and saw a HUGE double rainbow. It was glorious.

I had H turn around, telling him the story of Noah and the ark. H informed me that he knew all about the ark and the flood. We talked of salvation, the Holy Spirit, God’s promises, and such.

We turned on some praise and worship. H was raising his hands and singing so loudly to each song. It warms my heart to know that he has been through so much, and he still praises Jesus. I felt peace and warmth blow through my body.

By the way, H and I tested on the 3rd and are CO-VID FREE!

Maybe, God is moving.