Opsoclonus Myoclonus Syndrome

I Am Not Crying

I Am Not Crying

I Am Not CryingI Am Not Crying

I swear, I Am Not Crying…yet maybe I am.  Maybe I sat in the bathroom (after disinfecting it) and teared up.  I feel like The Rock in the Jumanji movie where they just get to the jungle and he repeats to himself “don’t cry, don’t cry.”  Yet tears began to flow.

This is not normal.

I will never get used to this sight.  Ever.  These “chemo” chairs affect my soul on a deep level.  Seeing all these babies, children, and young adults…it does not get normal.  It is not just “another day, another treatment.”  It’s not.

Today, someone finished their treatment.  The nurses sang and clapped.  You could see their smiling eyes even though everyone has a mask on.  That warms my heart but still, there is a disease that has ravished these children.  Not okay.

Beginning

We started out in a room and then got kicked to a chemo chair.  These chairs suck.  Drapes separate people, yet the floor is packed.  Nurses move, gurneys come in, IVs get clogged, IVs beep, meds flow freely.  Oncology kids are getting tested for Corona.  The screams I hear are piercing.  It is protocol in these uncertain times.  I get that and respect that.  Honestly, I’m glad they are taking precautions but still.  This is hard.

Lost Count

I have lost count at how many pokes, flushes, bp checks, temp checks, weight checks that he has had.  How many drugs have flowed through his little body, yet it still tremors.  Countless questions about why he isn’t in remission and will it ever happen.  Then countless answers of “Brandi, accept this.  This is as good as he will get.”  The uncertainty of what is to come as he gets older.  I am overwhelmed with grief.

Don’t Get Me Wrong

He has come SO far.  I mean, he is no longer in a wheelchair.  He can walk from point A to point B.  I don’t ever want to sound ungrateful.  Yet, if you have never had a child who has a condition and monthly treatments, then you don’t truly understand what we go through.  I can still be humbled and grateful while still mourning his health.  Does that make sense?  It does to me.

There are 2 people, on this Earth, who actually know what we have been through.  Those people are Hunter and me.  No one else has walked this path.  My husband and children have seen a lot.  Other people have seen what I have allowed them to see.  I don’t break often but when I do, I know it is pitiful.  Those who love me want to remind me and comfort me and point me to the cross.  I truly appreciate that.

Yet

There is a deep-seated pain that is always present.  The constant feeling of “what next or when do we have to use the big meds again?” How I watch him move and analyze every single tremor.  Fear that sets in when someone comes in my house that has been sick.  I live in fear.  Yes, I know fear is a liar.  I know that God is bigger.  Also, I know that He has a plan and a purpose.  I know that Hunter is healed due to the stripes on Jesus’ back.

I know.

Sadly, I know that I’m human.  Fallible.  Subject to listening to the lies of satan.  I know the blessings.  The strides he has made.  I am totally aware.  Honestly, I’m just tired.  I am so tired.  This journey, I want to end.  Not necessarily for me but for him.  I don’t want him to tremor, have rages, OCD, treatments, exhaustion, fear, uncertainty.

I Am Not Crying.

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Opsoclonus Myoclonus Syndrome

Free Items for Children with Special Needs

Free Items for Children with Special Needs

Here is a list of Free Items for Children with Special Needs.  Some of these are found at Meriah Nichols Website.  There are more things listed there, as well.

Ones We Have Participated In

Songs of Love Foundation this one was AMAZING and they are so wonderful to work with!  We just applied for another song for another one of our children.

Weighted Blankets, Lap Pads, and Fidgets they go above and beyond to accommodate you.  We did give them a small donation because they made like 4 blankets, 6 lap pads, and several fidgets.  Again, above and beyond.

Make a Wish and if you go through MAW, you can also receive a scrapbook from Crops of Luv.  Wow.  MAW provided something I never thought I would be able to do.  Not only did they take my HUGE family, but they added in Hunter’s biological brother and sister.  Also, my sister and brother-in-law, who raises those kids.  In total, 13 people were going without a blink of their eye!  Crops of Luv…words cannot express the joy my son had at seeing your creativity with his Disney scrapbook.

Rare Bear Program.  This is such a cool thing.  They ask what your child likes and they try to create a bear with that fabric.  It is very well made and very well loved.

Free Cake from Icing Smiles.  We have just applied to this, so I will keep you posted.

National Park Pass This includes anyone who is in the vehicle with your child.  The child HAS to be in the vehicle.  We have used this quite a bit and it is a lifesaver.

Disney Parks Disability Access Service Card.  They actually gave Hunter a card to the Avatar ride because he wasn’t tall enough to ride it.

Ones We have Not Yet Applied For

Bikes: here’s a comprehensive list from the Friendship Circle’s blog of places to turn to for an adaptive bike. (note: scroll down – the formatting of their post is a little different and it kind of threw me off for a minute).

Bikes, Wheelchairs, Adaptive Equipment and more: Variety’s “Freedom Program” funds a lot. Check out the program here. Apply for help here.

iPads: Danny’s Wish awards iPads to kids with Autism. Applications are open from Sept-December 31st every year; iPads given out in April.

Angel Flight: free air transportation for any legitimate, charitable, medically related need.

First Hand Foundation: providing gas money, parking and transportation related to a child’s care, vehicle medications, equipment and more.

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Hunter’s Song

Hunter’s Song

Hunter’s Song.  Excuse me, I may have to cry…it will only last a moment.  Songs of Love Foundation is such an amazing foundation and worth every penny of any donation of support they get!

About Songs of Love

The Songs of Love Foundation is a national nonprofit 501(c)(3) organization that creates free, personalized, original songs to uplift children and teens currently facing tough medical, physical or emotional challenges. Each “song of love” is professionally produced with lyrics containing the child’s name and references to all of his or her favorite activities, things, people, and pets. Songs are written and performed in any language in the musical style that the child likes best (kids, pop, R&B, rap, rock, alternative, etc.), by many talented singer/songwriters. Each “song of love” is delivered pre-loaded on our Song Of Love USB 8GB drive.

As each child is unique, so is every “song of love” composition. Since 1996 the Songs of Love Foundation has reached out to over 33,000 children in over 500 hospitals and health care facilities in all 50 states and the world.

There is much focus on raising awareness and money in order to find a cure for a variety of life threatening illnesses and lifetime disabilities. The immediate needs of children who go through serious medical and physical challenges are often overlooked. The “songs of love” have often been played to alleviate pain and trauma during painful and scary hospital treatments. The song recipients have played their “songs of love” in all kinds of situations and settings.  Such as car trips to the hospital, show and tell at school.  Also for family and friends, and even for the doctors and nurses. The children have their “songs of love” always available to them whenever they are feeling down.

How I Heard About Them

I am in a support group for OMS and my son also went through the Make a Wish Foundation.  This little flyer was in our packet when we left.  It is a simple little sheet and it was free.

I filled it out and sent it in…in return was something that brought tears to my eyes and absolute JOY to my son’s ears!  He LOVES his song and asks for me to play it all the time.  Please, click on the link and listen!  Go to the Songs of Love Foundation and see if you, your child, or someone you know could benefit from a little happiness and joy.

Here is his personalized song.!

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When OMS Roars It’s Nasty Roar

When OMS Roars It's Nasty Roar

When OMS Roars It’s Nasty Roar

Folks, not gonna lie.  This week has sucked the life out of me. When OMS Roars It’s Nasty Roar it is very nasty, indeed.  What started out as a normal week has ended with an intense fear overtaking my body while OMS takes over Hunter’s little body.

Some Highlights

Monday, Jude had a baseball game at Carlisle county.  It is about an hour from us.  We knew that our oldest daughter would be out of town.  Therefore, we had our son-in-law over for dinner every night.  Because of that and the intense baseball schedule, Bart and I took shifts with who went to what baseball game.

Monday night, Bart went and I stayed home.  I had the rest of the kids, so we are doing homework and I’m cooking supper.  Tuesday night, I got supper done early and I hit the ballparks.  Lucky for me, in that time, I got eaten up with mosquitos.  Also, I had 4 ticks, the size of a pinhead stuck to my back.

Go ahead, be jealous.

Come Wednesday

The kids had to get up early because it was grandparents day at school.  Hunter’s Mamaw, my sister, came at 7 am to eat lunch with him.  He was SO excited.  She said that when she rounded that corner and he saw her, they each ran to each other screaming.  For real…how sweet is that?

She said he didn’t eat much and was quite upset that she couldn’t stay the whole day.  Luckily, they were having the book fair.  She ended up buying her freedom with a couple of books for him.

I quickly emailed the teacher and let her know that he didn’t each much.  It is imperative that ALL kids eat a good breakfast and drink.  For OMS kids, it is a requirement.  They can start a rage at any moment.  Water and protein help even out those brain waves.

Pickup Time

When I picked up the boys from school, Hunter ran to the van.  I noticed his voice was raspy.  Honestly, I didn’t think a lot of that because that is how I get when I am tired.  I asked him if anything hurt and he said that the back of his neck hurt.

He told me that Mamaw was at his school because she “needed” him.  Also, he said that he was sad because she couldn’t stay but she bought him books.  He had had a good day and asked if he could play the Wii when he got home.

I told him he sure could, but only after he rested his eyes.  He emphatically said, “mom, my eyes don’t hurt…my neck hurts.”  I understood his plight and told him that we would put oils on him.  He could take a little nap and when he got up he could play the Wii.

Thankfully, he complied.

The Rest of Wednesday

I wanted him well rested because that night, a daughter was bringing a boy around for us to meet.  We had had issues with another child the night before and this night.  So, there was no break between me cooking for the masses, the issues with a kid, and Hunter.

When he got up from his nap, he had a dry cough.  I checked his temp and it was low grade.  Then, I noticed his eye turning in.  Watching him, his hands were shaking more and he was stumbling and falling more.

My gut was screaming but I had to keep it together until the end of the night.  We had to make it through meeting this boy.  We did make it through, by the skin of our teeth.  Started Tylenol and kept him home from school for the rest of the week.

ER Visit

This led us to the ER.  They were wonderful, in the ER, but I was not blown away by the doctors who were on-call.  Also, the fact that his regular neuro made no attempt at responding to any correspondence that I sent.  That was disheartening.  The nurses were amazing though.

We did IVIG and within about a month of his little cold, he began to return to his baseline.  This is scary.  A cold is usually gone in a few days with no lasting effects.  In Hunter, a cold sends him to the ER and being unable to stand, hold anything, speak clearly.

We don’t know, at the time, whether this will last for a brief time or a longer one.  PTSD is in full force because this is the first time he has been sick since being diagnosed with OMS in June 2017.

We Survived

We are all doing our best to keep him as healthy as possible.  Yet, things happen.  Sigh.  This condition sucks but God is bigger.  I choose to keep my eye off the storm and onto the cross!

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The Key to a Successful IV

The Key to a Successful IV

The Key to a Successful IV

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

Flare-Up 101

When you have a child with OMS, which you likely do not because it is 1 in 5 million, a cold spells trouble.  First, I noticed his eye turning in slightly.  Then, I noticed a slight cough.  Next, I noticed he couldn’t hold a pencil, fork, or work legos.  Lastly, 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 of time.  Now, not every cold (God willing) will lead to this, but it is likely that it 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 really even get triaged.  They quickly went through some basic things and then got us in a room almost immediately.  The nurses couldn’t even look at his chart because the on-call neuro was looking 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. This didn’t surprise me but I dreaded the IV part.  Hunter has some pretty serious 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 apologize for what is fixing to happen.  She totally understood and told me not to worry.  I told her that he was scared of white jackets, stethoscopes, gloves, the cleaning stuff, and rubber band.  She smiled and said no problem.

Then Magic Happened

She took off her coat and stethoscope and also informed her helpers to do so.  As they came into 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

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 totally isn’t a fluke!  He has not made a sound when he gets his IV in.  It is the most amazing 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!

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Excuse Me While I Cry

Excuse Me While I Cry

Excuse Me While I Cry

Well…if you will Excuse Me While I Cry, I would appreciate it.  Hunter’s teacher, Ms. Kim, sent this to me last week.  He spelled his name by himself for the first time ever.  Let me explain the “by himself” part.

Hunter has Opsoclonus Myoclonus Syndrome.  His condition is 1 in 5 million.  It affects everything from speech to feeding himself to walking, excessive shaking, low muscle tone.  Basically going from a 3 yr old normal child to a 3 yr old newborn who shakes violently.

Backend of Condition

The “front-end” of the condition is what I described (oh so briefly) above.  The “back-end” of his condition is low functioning, memory loss, learning disabilities, cognitive, and sleeping issues.  Oh, let’s not forget the rages and fits.

Anyway, when Hunter holds anything to write or cut with, a teacher will place her hand over his and put pressure on it.  He has hand/wrist/arm weights and he does use those but he doesn’t like too.  So now, they just do hand over hand to give him stabilization.

When he wrote his name, he DID NOT NEED any hand over hand.  He copied the letters he saw BY HIMSELF.  Alone.  WITH NO HELP!  I feel like I am screaming.  Frankly and unashamedly, I am!

Let’s Just Keep on Going

Now Remember

A year ago, we were told to bring him home.  That he would succumb to his condition.  Now, he is learning, growing, writing, and spelling his name!  God is SO GOOD and so faithful.  I am in awe.

He chiggers me so badly somedays.  I mean, you all know a 5 yr old can get all up in your stuff and jump up and down on your last nerve.  Clearly, in this video, he was wound tighter than a drum.  Yet, the alternative as to where he was a year ago.  I will take this wild child over that sad little boy any day of the week!

Miracle Child

I had a doctor tell my other mom last week that he was a Christian but that the day of miracles is over.  That he could explain everything with science.  God didn’t do miracles anymore…that’s why He created doctors.

I just smiled and said, “You should meet my son.”  He didn’t have much to say to me after that. Here is a video of him a year ago.  Now, tell me that my God didn’t and isn’t performing a miracle in this child?

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Medical Update

Medical Update

Medical Update

Here is our current Medical Update.  We went for his 3-month neurology check-up yesterday.  So thankful that it is a closer drive and for the most part, uneventful.  Add that to it was an afternoon appointment and that meant home earlier.

Thankfully, I had 1 freezer meal left from my massive freezer cooking session.  I was able to get the rice started and the food ready before I even left.  One less thing to worry about.  Also, a friend stood in the gap for me. She came and babysat one of my children, finished supper, and picked up another child.  Then, she got the privilege of seeing through a child and having to discipline her.

Fun times.

Missing our Navigator

I did not have my navigator with me, so I missed my wing-woman a lot.  Alyssa had been going with me to all our doctor’s appointments and IVIG appointments.  Who said having adult children would be stressful?  It is, but still, she has been a huge help.

Anxiety Attack

We pulled in and I got him out of the van and immediately, he started showing signs of intense anxiety.  I let him bring his flamingo.  He wrung the neck of that poor bird.  When he put it in my purse, he started wringing his hands and the bottom of his shirt.

Normally, he is talkative, smiling, and willing.  This time, he was anxious, scared, unsure of his surroundings and agitated.  I put some oil on him and on me.  The nurse called us back and he would not even move.  That is so unlike him.

Reasoning

I kept telling him that we are just here for a visit and that there were no IVs today.  He didn’t care.  It was almost as if he were refusing to do anything.  He would not stand on the scale.  When it was time to measure him, he would not stand up against the wall.  Nothing.

Mini Nap

We got back to the room and I told him that he was not being kind to the nurse, which he wasn’t.  That he needed to listen and do what he has always done.  He was scared and tired.  I made him sit in my lap and close his eyes.  That is his least favorite thing in the world to do.  God forbid he would fall asleep and miss something important.

I got on my phone and I turned on Debbie.  She has sent me some songs that I have kept saved on my phone all this time.  We listen to her every time he gets scared.  Within 30 seconds, he was asleep.  He probably slept on me for 30 minutes.  When the doctor knocked, he never moved.  His body simply melted into mine.  Hearing Debbie relaxes him so much.

Conversation with Doctor

I’m glad he fell asleep.  It gave the doctor and me quite a while to talk things through.  We spoke for about 20-25 minutes before she even touched Hunter.  I appreciated that.  She is a mom of young children so she gets my plight and she allows me to have my moment.

All in all, he is stable.  He is not in remission, though she believes that remission is on our horizon.  Yet, even though he may get into remission, flare-ups are par for the course.  It sort of is what it is.  We have determined that he is allergic to some filler that is in his steroid, which causes him to itch.

She also made note of the fact that his IVIG makes him WILD the next couple of days.  He isn’t just wild…he is wild-eyed and not stopping for about 2 days.  I guess that is a side effect.  Honestly, I would rather him be wild than be sick or have headaches which are the normal side effects.

PLEX

We will probably do PLEX (Plasma Exchange) in the summer.  This is aggressive and it will be her first case of OMS that she does this on.  Normally, a dr will do ACTH (does not work for Hunter), Rituximab (does not work for Hunter) and IVIG (makes him wild).  If we do not do Ritux (a type of chemo) another option is Cyclophosphamide (more intense chem).  I really would like to avoid that.  He does not have cancer and our goal is to get rid of B cells.  That would certainly do it but he would have chemo side effects.  PLEX can do the same thing, yet it is still a hard thing to do.

PLEX is like dialysis only it is for your blood and not kidneys. It is a 5-day hospital stay and then after that, we do IVIG.  IVIG puts in new, healthy B cells in hopes that his body will start producing it on its own.  It is hard.  All of this is hard.  I just wish it would go away but I will continue to praise Him in this storm.

Plan of Attack

She prescribed him a LOW dose of an SSRI to help with the anxiety.  It may or may not work.  Hunter tends to not respond well to any medications.  Good times.  For now, we will still do Symphony of Cells on him and relaxation techniques.

Mobility Dog

She is all for him getting a mobility service dog.  Since we are unsure of what the future holds for him, physically, she is writing a letter of support for this process.  This will help him in so many ways.  Mobility dogs are amazing and it could just open up so many things for Hunter.

God is Bigger

Sadly, the cost is astronomical.  We will have to do fundraisers and tighten our belts.  The waitlists are also long.  I am choosing to trust if the Lord wants this to happen, it will.  Miracles happen and Hunter is a walking/talking miracle.  God is bigger than all the long lists and money issues.

All in all a good visit.  We keep things the same, for now.  There is a plan.  Oh, we will meet with a Neuro-Immunologist soon so we can have another doctor familiar with our case if need be.  The thing about that is, when Hunter gets sick, I call Neuro.  If he is bad sick, we go to Vanderbilt.  No more hospitals up here because they are not familiar with OMS.  If for some reason our doctor is not there, we need a backup.

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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 the run of the mill type of conditions.  By “run of the mill” I mean those that are diagnosed frequently.

Awareness

This site is all of the hardcore, rare, little to no treatment type of conditions.  I am very excited that Mike Michaelis and his team have worked so 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 through there.  It is the same as Amazon only this time, a percentage of what you buy goes to a charitable donation.

This does not cost you a dime.  First, go to choose your charitable organization and type in “OMSLife Foundation” (in Cypress, TX).  Second, select that option.  Finally, anything you spend will help the foundation to raise money and more awareness for Hunter’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 that are in my head, they have formed into a video.  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 all the things that Hunter has.

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Opsoclonus Myoclonus Syndrome

Who Knew Almost a Month Ago

Who Knew Almost a Month Ago

Who Knew Almost a Month Ago

That that hankering to cook for a month was a nudging from Jesus?

Not I said the fly.

I just knew that I wanted to cook and I wanted to cook a lot.  Well, I say that and I need to add that we were fixing to get meat.  We buy a cow every year and the time had come for our cow to be processed.

What I Thought was a Necessity

There were about 8 roasts that needed to be used before we got more.  I wanted to cook those up.  In doing so, I thought I’d just get a big pack of chicken as well.  Also, I scoured all the goodies that I had forgotten about in my pantry/fridge/freezer area.

Once all was said and done, I had enough meals to last from June 6 to July 21st.  Today, I was looking at my list and my calendar.  Once looking and taking more inventory of things, I have until July 31st in meals.

In the end, it wasn’t the roasts that *had* to be cooked.  It was the prompting of the Lord to cook and prepare for this upcoming trip.  We had NO intentions of going this month because of so many reasons.  He just worked it out.

WOW.

Do you know how easy that makes my life?  I don’t have to think about anything.  There is a calendar that I keep on my fridge.  On that fridge, I have down what we are having, so I do not even have to use my brain.  My kids look at the day and go to the freezer.

The reason why I have been able to stretch it is that we have had to have been able to eat leftovers.  I did not account for that at all.  Normally, we don’t have a lot of leftovers and what we do, we eat for lunch.  That saves on our grocery bill because I do not have to buy as much for lunches.

Quick Decision

All that being said, we made a spur of the moment decision for Hunter and me to go to St. Augustine for treatment.  We went this time last year and he needs a one-day treatment.  By having suppers ready, I do not have to add that stress to my plate.  Big Daddy does not have to worry about what is for supper.  It is done.

My Village

Another reason we can pick up and go is that I have a village.  I have Big Daddy, my mama, my big girls, my son-in-law, and a dear friend who picks up the slack to watch my kids.  If it weren’t for those people, I could not do what I do.

I am so grateful that they are willing to help me and my family.  It is such a blessing.  They all want Hunter well, so there are so many prayers by so many people.  To actually have people willing to be the hands and feet of Jesus so I can travel with him…precious to my soul.

Prayers appreciated for next week.  Safe travels for Hunter and me, an uneventful week, and my family holding down the fort.

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Beads of Courage

Beads of Courage

Beads of Courage

We have been trying to get Beads of Courage since this journey began 2 years ago.  I first learned about them from a fellow blog mom Renee’s Little Earthling Blog.  Her son’s story was where I read about it.

Norton’s Children’s Hospital

At the 3rd hospital, Norton’s Children’s Hospital, we approached a nurse and she sent in the floor Child Life Worker to talk to me.  This was Hunter’s 2 day IVIG/Chemo time at the hospital.  We had to fill out a form to see if he qualified.  There are certain conditions that a child has to have in order to qualify.

Cancer and Blood Disorders
Cardiac Conditions
Burn injuries
Neonatal ICU Families
Chronic Illness

Do We Qualify or Not?

At that point, in assuming we qualified, we had to go through a list of procedures and count how many of each he had had from the past to the present.  Daunting task.  I sat, for those 2 days and I counted.  I read lots of med reports and looked through my calendar to remember.  Hunter deserved every single bead because of all that he had been through.

As I painstakingly remembered and documented, I gave the document back to the Child Life worker at Norton’s.  We never heard another thing from them.  They said because he didn’t have cancer, that he didn’t get to participate in this program, at their facility.

Moving On

I never approached UK Children’s Hospital or UPMC about the Beads of Courage because I figured they wouldn’t let him participate either.  The thought passed through my head a few times but I let if flit on through.

Beads of Courage

Yesterday, at Vanderbilt Children’s Hospital, the thought came back up.  I saw this honey of a boy walk through with a smile on his face from ear to ear.  He was proud and excited.  Yes, he was facing a long chemo day and that is hard.  Yet, he could take some time and string each bead on his necklace.  As I saw that, I thought I would ask again.

New Day New Hospital

Katie, our Child Life worker, came bopping over and she said she was fixing to talk to us about this opportunity.  I told her what had happened in the past.  She just said that Hunter absolutely qualified.  Since we were never given the opportunity, things had changed a bit in 2 years.

What she did was give me the form (below) and I just checked everything that he has had done over the last 2 years.  On the back, I wrote down the things that required great bravery and those were special beads.  Then, we calculated the days he has been sick.  He received beads for every 100 days he was sick.

Hunter’s Choice

Hunter got to pick out a bag that was made by a woman in Arizona.  He carefully chose each bead as Katie tried to explain to him why he was getting it.  That was not so much on his hearing level LOL.  He just wanted to choose the prettiest bead.

Beads aren’t the be all and end all but it is something that he can know is consistent.  Hospitals are not consistent.  You have different nurses, different techniques, different reasons we are there.  Beads…they are colorful, bright, exciting to kids…they bring joy.  He can sit and look at each one and know that he did something amazing.  That he took steps to better himself and his health.  He is strong.

Beads of Courage

You can zoom into the booklet and see all the ways you can earn a certain bead.  When we all got back, I sat and looked through all the beads.  I read the reasons why and then Alyssa did the same thing.  She helped him sort them all out.  He sat and strung each bead one by one.

Pure Joy

Beads of Courage

Clearly, he was excited about the beads.  I have seen some cool ideas on how to display them online.  He earned 3 more yesterday, but we will get them on clinic day next month.  He needs another 100-day bead, a stick bead, and a clinic visit bead.  We will add it to his bag and string it when we get home.

Donate

You can always donate towards Beads of Courage anytime.  The website I have highlighted above has a tab about donations of money or beads.  The Predators donate money towards this program for Vandy.  Gives you the chance to put a smile on a kids’ face.

Beads of Courage

Related Posts:

Going the Extra Mile

Time to Get Over Ourselves

Choosing for My Heart to be Broken