Little Lies Along the Way = Fear Amongst Children

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Before I move on….I want to say I have MAD respect for nurses, nurses aides, child life people, and all the other “worker bees” in the hospital.

Mad.  Respect.

These are awesome and under appreciated people.

With that being said….I have learned a lot of things over the last 10 mths of Hunter’s illness.  I know they heart behind these statements.  I know the ease these sweet nurses are trying to give to these kids….but with my kid….you aren’t helping much.

  • 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 special medicine to help you take a nap (placing 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 really have a heart (checking heart beat)
  • This is gonna squeeze your arm just a little bit (tourniquet for IV)
  • This is gonna 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 big donut (MRI)

These are just a few statements that I’ve heard being used with Hunter.   In the beginning….these statements, I got.  I understood.  I accepted.  I even played along until I began to see small changes in him and extreme fear.  He was resisting “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.

I know I come across as this hardass mom who using too technical of terms with my 4 yr old but this is his life.  This is his new normal.  Hospitals.  In and out of hospitals and doctors offices.  The past few doctor and hospital visits, I have changed my tune.  For instance, this morning, Hunter had to have an MRI done and a spinal tap.  Child life came upstairs to talk with him and play with him until he was sedated and going back for his procedure.  They brought this awesome doll, with a hospital gown and some 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 that I use real 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, that we have changed how we deal with things.  I also explained that he likes to be called Kid.

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, a belly button, and some chest/back hair LOL 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.  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 out Bob’s IV when Hunter got his IV flushed..we even put the sterilizing cap on the end.  I covered everything I could think of.

The ladies were in awe of how Hunter responded, how much he knew, and how I chose to handle things with him (I totally 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 condition for him.  In order to take the fear away, I want him to be a student (even at this age) of what is going on in his body and by doing that….it gives him some control.

This has been a scream free hospital stay.  He 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.

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^^Photo compliments of Megan Miles^^


Confabulation: The “True” Story

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According to Merriam-Webster Dictionary,


1to talk informally 
2to hold a discussion 
>>>>>>3to fill in gaps in memory by fabrication<<<<<<<

A major characteristic of brain-damaged patients is the tendency to confabulate—to hide and dissemble about their damage.  —Peter R. Breggin

Now, I have stumbled upon another site called FASD FAMILIES and though it is geared more towards younger FASD kids, it has a ton of useful information.  One has to realize that, say a kid is 16 years old, physically.  On a good day, with a few hiccups, they are developmentally, emotionally, or mentally 8 yrs old.  When they are escalated, you are dealing with a 4 year old.

This is at no fault to the child but to the situation of why they have FASD, which causes prenatal brain damage that they deal with for the rest of their lives.  The poor decision of a mother (or father), leads to a lifetime of struggles to their children.  This author defines confabulation, as well, and I thought it was PERFECT.

CONFABULATION: The fancy word is confabulation. Some would say it’s lying. I think it’s more like their version of the story becomes their truth because they don’t know the difference between truth and reality. Once they tell a story, they accept it as gospel.

^^^^^^^^^^^^^^^^^YES, HOLLA, PREACH IT, YOU GO GIRL^^^^^^^^^^^^^

I have had a shitastic day with my oldest dd, 17…..I mean, if it wasn’t one thing, it was 500 others and the excuses flowed, the lies confabulations were on point and I fell for it.  I freaking fell for it.

These are the mistakes I made (in no particular order):

  • I asked a question, I knew the answer too.

  • I began escalating because she was escalated.

  • I’m not even in town to deal with it because I am in the hospital with another child.

  • I used too many words.

  • Other people were involved, though they were stepping in for an absent me not realizing they were jumping into quick sand.

  • We talked too long.

What an evil vicious cycle FASD is….or any of it!  FAS (Fetal Alcohol Syndrome), FASD (Fetal Alcohol Spectrum Disorder), PFAS (Partial Fetal Alcohol Syndrome), ARND (Alcohol Related Neurodevelopment Disorder), ARBD (Alcohol Related Birth Defects).  It is a horrific, invisible disease.

I feel as if I have failed as a parent because I cannot get through to these children, though we are the only family they remember.  That damn Amygdala brain (primitive brain that remembers in utero to 3 yr memories).  It is always there.

We have tried therapy, meds, regular dr visits, pastoral counseling, reading the Word, writing the Word, putting positive people in their lives, talking till I am blue in the face…nothing gets through.  Nothing.

Now, the big question is….


The quick answer is “I have no clue.”  The longer answer is “I REALLY have no clue.”

I guess it is time to not only continue to study about OMS, to help Hunter…but to find the answers.


Let’s Talk About Them Slippers…..

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I have never been a slipper kind of gal.  They irritate me.  I have to bunch my toes up, when I walk in them, or they will fly off my feet.  I don’t like big slippers, I don’t like little slippers.  I don’t like animal slippers, I don’t like fancy slippers.  I do not like slippers.  I do not like socks, but that is for another post.

In 2014, my daughter asked me what I wanted for Christmas….I had no clue and I tried to just give her a vague answer because I really didn’t need anything, but she wanted to give.  That is her Spiritual gift….She *LOVES* giving gifts that bring joy to people.  Loves it.  I didn’t want her wasting her money on me….but she insisted.

So I said, get me some slippers.

I knew that I probably would never wear them, but it was an idea, I could put wear them around the house on Christmas Day and then retire them to the closet until the next Christmas.  Problem solved.

Well, these are the slippers that she bought for me.



Little did I know…..I would form a bond with these slippers and they have forged their way into my heart and they are very very special to me.

When I opened my gift…I did the act of surprise face and then I promptly put them on and oohed and ahhed over them.  She was pleased.  That is all that mattered in my book.  I did, notice, however, these were not like the slippers I thought they would be.  They were more like fuzzy sock type of slippers and though I do not like socks…I do when it is super cold….so I did put them on and they did the job.

In May of 2015 is where my became a part of my journey.  That is the month that my Lady had her first, of many, strokes.  I stayed with her during the day and most nights.  She was in and out with recovering from her stroke and her MANY UTIs….so.  very.  many.

The next year, daddy had a stroke.  I was blessed (is that the right word) that I knew who to talk too, what to say, what questions to ask, and what doctors/tests to request because I had already walked through that with Lady.  I spent several days with him during the day and evening.  Flash forward a year and daddy had quadruple bypass surgery.  Then Hunter got sick and was in and out of hospitals,, then a few months and my Lady went to a nursing home….then back to the hospital….then back to the nursing home.  My slippers and I saw my Lady for the last time on September 30, 2017, as she took her last breath on October 1, 2017.

My slippers have walked many many hospital halls and nursing home halls, seen many ERs, lots of wall decorations, supported me in many conversations with doctors, specialists, and nurses, wheeled lots of wheelchairs, walked from floor to floor and hall to hall, absorbed tears while I hid in the bathroom, and so much more.  Alyssa has bought me other slippers for Christmas and I do wear those, around the house because I like them.  These particular, black, gross, dirty, washed too many times slippers…..they are so special to me.  I keep them packed in my “to go” bag at all times.

Thank you, Alyssa…for giving me something I never really wanted.  They have a lot of memories.


Gonna Kick Some Butt

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I almost used the “donkey” word cause that is how I feel right now.  Progress with OMS is slow….like a snail moving from Alaska to the Florida Keys kind of slow.  We have semi okay days and then crap on a stick days.  Today has been a mixture of both.


Mornings are hard.  He typically does not want to eat much and his OCD (from the OMS) is off the charts.  He has to have every chair in place, every blanket in place, every shoe either in the shoe bucket or lined up, he has to touch every door and he chants the same sentence over and over and over and over and over and over (annoying, huh), and over again.  When we say to stop…’s almost like he can’t.  He hears me and he acknowledges that I’m speaking, but he can’t stop himself from doing all these things.  So, he usually ends up back in his bed, where the first rage of the day happens.  I got part of one videoed today.  It’s lovely.


Then there are moments when he is super sweet and loving.  He is almost completely potty trained (I think I’ll do another post on that topic).  He is doing great.  It is tough because he can’t stand still long enough to get his pants down and then when he bends over, he falls over, then he can’t get stable enough to get on the potty, then when he tries to get up he shakes and knocks the pee in the floor….then we have another production.  Still, he is almost potty trained and I view that as a score.


His therapy is tough on his little body.  He is usually sore and flustered for a few days after.  He is worse, muscle tone wise, then when he was when he was assessed the first time a month ago.  We have a baseline and we ARE gonna move up….channeling those good thoughts.  Another score was his speech.  He speaks very choppy and staccato.  He loses his words or has to think about them and he gets, again, very flustered.  His SLP said that his articulation of words was that of a 5 yr 2 mth child!  Very exciting stuff.  She is going to treat his fluidity like she would stroke patient because OMS is neurological.  Pleased to hear he has good articulation, though.


We’ve had to up his sleep meds…and yes…they help his sleep and his behavior BUT he began itching incessantly.  It was pathetic.  Everything itched and when I would hold his hands to keep him from itching, he would rub his face on anything he could get ahold of.  We backed it back down and he isn’t sleeping as well, but he isn’t itching anymore either.  There is nothing more mind numbing then when you have mosquito/flea bites or an allergic reaction and you cannot stop itching.


Tonight, we began our exercise routine.  My goal is 2x per day, with the incentive of outside play for a bit.  It is still really cold outside, so he cannot stay out for very long.  If I can get more in, I will, but it is all in how well his mind and body tolerate it.  We are doing ankle stretches, hip stretches, hip rotations, compression massages on his back, light massages on his bag and legs, bear crawls, sit ups, push ups, and crawling.  The goal is to get his core muscles more stable and to gain some strength.  We do not want regression we want progression.


I recently ordered his gait training walker and I ordered a weighted vest to wear so he can have some stability when he walks.  We also use hand weights and weighted utensils.  There is also this blue sticky stuff the OT gave us.  It is reusable and you put on a surface and it sticks to that surface, then you put a plate/bowl/cup/toy on it and it stays in place to help from everything moving because of his ataxia.  We got a thing to hold a crayon/pencil in his hand and some sensory things to squeeze for his hands.  I want to be proactive because if I’m not….I’ll crawl up in a fetal position and cry.


I ain’t got no time for that.


Opsoclonus Myoclonus Syndrome: What is It?

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What is Opsoclonus Myoclonus Syndrome (OMS) /Opsoclonus Myoclonus Ataxia (OMA)?


Opsoclonus Myoclonus Syndrome (OMS) also known as Opsoclonus Myoclonus Ataxia
(OMA) is an extremely rare neurological disease which appears to be the breakdown of an autoimmune process involving the nervous system . While OMS can occur at any age, most cases involve children under the age of three years old. Most OMS children have a normal birth and development until age 12-36 months (average). At that point, something triggers the immune system into overdrive and it can’t shut itself down.


About half of all OMS cases occur in association with neuroblastoma (a cancer of the sympathetic nervous system usually occurring in infants and children). When the  immune system cannot find a neuroblastoma, it begins attacking the base of the brain.


* Gross and fine motor functions affected
* Speech impairment occurs
* Vision (“dancing eyes”) problems are exhibited
* Severe ataxia (balance) problems arise


“Because this rare movement disorder is so unique, some neurologists may never see a case in their entire career,” Dr. Pranzatelli – .


This disease affects roughly one child in 10 million annually, or about 60 people per year worldwide.


Signs and symptoms


OMS is commonly mistaken for other illnesses such as Cerebellar Ataxia or inner ear infections. Prompt diagnosis often determines the severity of the long term impact on the child. Symptoms of OMS include:


*[Opsoclonus](rapid, involuntary, multivectorial (horizontal and vertical), unpredictable,
conjugate fast eye movements without intersaccadic quick rotation of the eyes intervals)


*[Myoclonus] (brief, involuntary twitching of a muscle or a group of muscles) *Ataxia both truncal and appendicular *Dysphasia (a language disorder in which there is an impairment of speech and of comprehension of speech, caused by brain damage)


*[Mutism] (a language disorder in which a person does not speak despite evidence of speech ability in the past, often part of a larger neurological or psychiatric disorder)




*Irritation or malaise




*Strabismus (a condition in which the eyes are not properly aligned with each other)




*Sleep disturbances.


*Loss of balance, inability to walk


*Loss of fine motor skills




A child afflicted with OMS can quickly regress from healthy and active to a child who constantly cries, throws tantrums, and loses all sense of balance and fine motor skill. This regression happens seemingly in a matter of a few days or weeks.




About half of all cases are associated with neuroblastoma cancer, and most of the others are suspected to be associated with a low-grade neuroblastoma that spontaneously regressed before detection. It is hypothesized that a virus infection causes the remaining cases. OMS is not generally considered an infectious disease. OMS is not passed on genetically.


Treatment of OMS


There is no known definitive cure for OMS. However, several drugs have proven to be effective in its treatment. Some of the medications used to treat the symptoms are:


*Corticosteroids Used at high dosages, this treatment can accelerate regression of symptoms. Subsequent very gradual tapering generally follows. Most patients require high doses daily or every other day for months to years before tapering. These medications go by the name ACTH and Prednisone, to name a few.


*Intravenous Immunoglobulin (IVIG) These infusions are given on average every 4-8
weeks for years. Most OMS children are required to have an outpatient hospital visit for these treatments.


*Chemotherapy treatments include Cytoxin and biotherapy treatments include Rituxin at various levels and for various lengths of time.


*Other medications are used to treat symptoms without influencing the nature of the disease (symptomatic treatment. These include:
*[Trazodone] can be useful against irritability and sleep problems *Plasmapheresis (“washing the blood”, showing similarities to dialysis for severe, steroid-unresponsive relapse .


Treatment of OMS should not be delayed. As soon as OMS is diagnosed, immunotherapy should be given, even before tumor removal. Surgical resection of the tumor may not help the symptoms of OMS; other treatment is usually necessary. Because chemotherapy is also immunotherapy, it should work to treat the tumor and the OMS. While “the cure” remains elusive, a handful of doctors are researching OMS.


Often, our OMS children are part of their research and their experiments in order to progress a cure. This often requires traveling great distances to meet with one of these specialists. They will often require spinal taps to determine the B cell and T cell levels of the child. Also, CT scans, MIBG scans, and other testing is normally a semi-annual or annual event for these kids. Once the specialist sets the treatment protocol for the child, they work with the local neurologist and/or pediatrician. At times, an OMS child may be working with a team of doctors including pediatricians, neurologists, OMS specialists, oncologists, endocrinologists, and others. When there is not agreement on treatment, parents need to resolve the conflict and the child normally suffers during the wait.


What is the Prognosis?


Remission may be more common in viral or idiopathic cases than in children with
neuroblastoma. Relapses frequently occur with minor illnesses; viral infections may play a role in the reactivation of disease in patients that are exposed. Children with severe opsoclonus myoclonus at the start have the highest risk of permanent neurologic problems. Other problems that may arise are learning and behavior problems, such as attention-deficit hyperactivity disorder, conduct disorder, and obsessive-compulsive disorder, which often require treatment with medications specific for those problems. These problems emphasize the need for early diagnosis and treatment.




Neurological symptoms may return during illness, fever, stress, sedatives or anesthesia, tapering or discontinuation of immunotherapy, and after immunizations. Because of the
susceptibility to relapses, it is imperative to keep OMS children away from sick individuals.  What is a common cold or a flu bug can cause a relapse in an OMS child and send them back to the hospital. Such relapses are common and usually occur more than once. Rarely, many years may elapse between episodes. Relapses should be treated. Usually children who responded initially to immunotherapy will do so again, even to a single agent.


Treatment Complications


As much as we all would like to eradicate opsoclonus-myoclonus, overly aggressive
chemotherapy or immunotherapy can devastate the immune system, causing life-long aftereffects. Infections in children receiving immunosuppressive drugs must be taken seriously and receive medical attention early.


Common myths about OMS children


OMS children have special needs that will ultimately help them be successful citizens in the future. These children do not necessarily need dependent care for the rest of their lives, but they do need some help to achieve these goals. Some common assumptions about OMS kids that friends, family, and school administrators make include:

MYTH: These kids will always be behind and require dependent care.

FACT: With proper treatment and focused care OMS children can lead a life independent
of facilitated care. OMS children have grown up and gone to college, gotten
married, and raised their own children. They need a hand, not to be looked down

MYTH: Special Education for all activities is required.

FACT: While OMS children may have certain needs, careful attention needs to be made
to ensure a child is not labeled as “Special Education” for all classes. Often, the
kids are just needing special accommodations for certain classes; such as one on
one facilitation for certain subjects.

MYTH: Speech development is another indicator that OMS children will be behind.

FACT: While OMS children may have certain needs, many OMS children can achieve
scholastic milestones when given the opportunity. Delays in speech development
should be seen as a teaching opportunity to assist the child in achieving
milestones, not as a predetermined sentence on their future.

MYTH: Attendance issues are because parents are overprotective regarding their OMS
child’s illnesses.

FACT: The immune system of OMS children is greatly compromised. Parents need to be
mindful that when illnesses are rampant in the classroom, it can cause great harm
to their children. A minor illness passed to an OMS child can begin a relapse
with potential to hospitalize the child.

MYTH: Parents allow misbehavior in their children. Their poor behaviors, mood swings,
non-responsiveness, and OCD tendencies are because parents enable these

FACT : OMS children routinely exhibit behavior issues and have bad moods. This
disease attacks the brain and creates issues which do not allow children to
function normally at times. Their behavior issues and bad moods are not
“learned” issues, but rather outward evidence of the damage that has been done to
that part of the brain. These bad behaviors may come on suddenly or the child
may be aware it is coming on. OMS children at times may also go into a nonresponsive
state and give the appearances of being rude and disrespectful. In
reality, the child is trying to process the instructions or the present situation.
Processing certain instructions such as directions somewhere, may seem simple to
many, but create tremendous confusion for an OMS child.

MYTH: Parents are mistreating their children by not immunizing their OMS child.

FACT: While not proven, there are strong links between OMS children and
immunizations given to young children. It is a strong enough case that the
pharmaceutical industry has now created a fund which provides compensation for
certain OMS cases filed within 2 years of diagnosis.

MYTH: OMS children don’t fit in well at school.

FACT: OMS children have not always had an easy childhood so far. They have spent a
lot of time in hospitals and doctors’ offices and may be apprehensive about those
visits. They often are secluded from the public for months and years and may be
behind in social skills. They don’t always get an opportunity to be in large groups
and that may scare them.

Reference materials for more information
* Wikipedia – Opsoclonus Myoclonus Syndrome
* Dr Pranzatelli –
* OMS Parent Web Site –
* Facebook groups
* OMSLIFE – Opsoclonus Myoclonus Syndrome Support Group,
Opsoclonus Myoclonus Syndrome Support,
OMS Families – Opsoclonus Myoclonus, Sindrome de Kinsbourne


Taking the Gloves Off

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Enough is enough is ENOUGH.


I, we, the whole family, has had enough.


As forward as I am, I have tried to step back and let the professionals do what they do best.  I have tried to hard to not be the mom who does too much research and interject my opinions.  I have been as good as I feel like I can be because I want the best care for my son.


Now, don’t get me wrong.  I like our current doctor.  He normally responds to my emails (though not so much lately), he has agreed to confer with a specialist (Dr. Mitchell) in LA to bounce ideas off of each other.  I’ve sent him my YOUTUBE channel to show him his progress.  I’ve kept detailed records of daily symptoms after starting his ACTH shots.


I think it is time for me to be a bit more assertive.  Probably much to his chagrin.  I am going to be doing lots of homework on OMS and I’m going to be asking a lot of questions on my facebook support group.  These people are a wealth of information.  They have had success and they’ve had failures and I want to glean from them.


Our Current Issues


    • Constant Shaking.  Worse after nap.


    • Opsoclonus is constant.


    • Inability to hold utensils and feeding himsef


    • Fine motor skills are struggling


    • Gross motor skills are struggling


    • Not sleeping well


    • Distinct speech issues


    • Glassy eyed wild screaming fits where his whole body stiffens.


    • OCD is rearing its ugly head


    • I believe he has had some acid reflux.


    • Rages


    • Not wanting to eat


    • Unsure of everything and everyone


There are many more issues….but my brain is shutting down.  I will research each and every one of these things and I’m going to fight for what I believe will help him….even if it means stepping outside of myself and trusting Jesus and changes drs.  There is a great dr in Boston and another wonderful lady in LA.


Big Daddy and I will sit down and evaluate his symptoms and how we can holistically help him or if we need help from the world of the medical field.  We will discuss whether we will remain and trust our current dr or step out on faith and go to LA or Boston.


There will be nothing that will stop me from figuring this out.   Nothing.  God goes before me, He is behind me and He has me flanked on the right and the left.  I also have my family holding my arms up and intervening on Hunter’s behalf.  I will not shy away from asking for prayer and specific prayer for him.  This “condition” will not define my son.  He will overcome.  He will win.  He will have no side effects.  He will be the exception to the rule.


I’m done walking around the mulberry bush….never was my strong suit…, I’ll do it my way (with God’s guidance, of course).


Specific Prayer Requests


**figuring his sleep schedule out.


**kicking around melatonin or trazadone


**Switching drs.


**Work on rages and how to better handle it without me losing my shit.


**Asking for help more


**Not feeling guilty about taking time for myself to rejuvenate.


**He has a 3 hr assessment next week for OT, PT, and SLP…anxious for that and to see the results


**15-16 is set for IViG and Chemo


**Meeting with our current dr and me being bold (asking for CBC and FA testing) and not just agreeing to agree.


A Moment I Won’t Soon Forget

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This past Sunday, Big Daddy and I decided that we would go to church with my mama.  See, her Sunday School Class (the Empty Nesters), as collected money the past 2 Christmases and donated it to our fund for Louisville.  We put ALL donated money in a plastic money bag and we have marked it Lville.  We use this for gas, to and from, snacks, food, and hotel stays.  I made last years donation stretch quite a bit…almost until the end of the year.  This year, they surprised us and did it again.  We are so humbled and grateful.


My days are short and busy, so getting to the store to buy a thank you card seemed like an impossible task….also…..I just didn’t know if I could find one that could do justice in expressing ourselves.  These people had never met us.  They have never met my son, they just know what my parents tell them and it is hard for our parents to understand the ins and outs of this life altering thing that Hunter has.  I thought it would be best to personally go, introduce them to Hunter and the rest of my family and answer some questions, as well as, thanking them.


We got there and their SS teacher, Donnie, stepped out in the hall.  When my crew walked in (everyone but my oldest daughter), the look of surprise on my daddy’s face and my Martha’s……that was a good moment.  After being introduced to everyone and them, so graciously feeding my kids LOL….I looked over and there stood my daddy.  With the fellas, drinking his coffee.  See, the thing is is that, growing up my dad came for holidays and if one of us girls sang.  That was it.  I never knew him to go to SS, he would slip in for those brief moments in big church and then he would leave as quick as he could.


In my adult life….I’m pretty sure I’ve never seen him in a church (except for weddings).  My mom faithfully has always gone…dragging her kids behind her 🙂  I was overwhelmed with the sight of him standing there.  He wasn’t there because he was forced.  He was there because he wanted to be there.  He is surrounded by men and women, of God, who love him.  He CHOSE to go.  He drives by himself.  It is cold outside…like bitterly cold and since his medical issues (stroke 2 yrs ago and quadruple bypass earlier this year), he can’t hardly handle the cold.  Yet, there he stood.  With that grin on his face….taking it all in.  He has been in church since God shook him to the core about 11 years ago.  He fell in love with my mama again.  He fell in love with God again.  His SS teacher is a retired cop, he knows the things my daddy has gone through.  He can sympathize and empathize.  They are like a little match made in heaven.


I am in awe of the goodness of Jesus.  I’m blessed to have parents who love each other.  I saw my daddy….in a sunday school class….because he *wanted* to be there.  My heart.  My parents have stood in front of me protecting me from the world, beside me as I made tough decisions, and behind me to hold me up when I start to fall.  They have done anything that I’ve asked of them and then some.  I can never repay them.


My rainbow is growing 🙂


Who Likes Getting Shots

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This past week, we have started a new regime of medication for our zebra.  This is not a fun one….nor are the other medications that he has to take.  This one, however, is just stinky on all fronts.


Our first line of defense in fighting OMS is getting IViG treatments once a month.  This means, we (Hunter and I) either leave SUPER early in the morning to get to Norton’s Children’s Hospital by 8 am or we leave the night before.  We get there, register and then we head to the OMO area where kids are there to get their treatments for whatever they need it for.

We have a wonderful nurse who has been with us every time we have gone.  He is going on this 6th treatment.  When we get there, we do the standard answering questions and getting his vitals.  Within about an hour, they come in (usually the IV team, which consists of 2 women whom I am convinced are angels from heaven) and start his IV.  This is never a fun thing, especially for a toddler.  After that is finished and tears are dried, Kim (our nurse) comes in and gives him Tylenol and Benadryl to help offset any potential side effects.  We then wait for about 30 minutes until Kim comes back and starts is IViG drip.  She gets the blood pressure cuff on his leg, he watches a 1/2 of a movie…gets slightly evil and then goes to sleep.  He may sleep for an hour to 2 hours.  She comes in every 15-30 minutes to adjust the time.  We run this IV for about 6-10 hrs depending on how his body is reacting.

Once he wakes up from his nap, he immediately starts with the Opsoclonus (eyes darting back and forth) and then the shaking starts.  I try to get him to eat lunch, but it is hard.  Last time, I ran to the cafeteria to get him a salad and he ate that pretty well.  Once we are done, we get everything out and we wait another 30 minutes or so and then we drive home for 3 1/2 hours.  Sometimes we stop for supper and sometimes we just get gas and eat junk on the way home.  He *rarely* sleeps on the way home, so that makes for a super fun time.


This January, he will have his third dose of Rituximab (chemo).  He had one about a week after he got out of the hospital, in June and then another 2 weeks after that.  Our goal is to kill off the B-cells that his body is producing.  See, he has either *had* cancer and his body did its job, produced the B-cells and attacked the cancer, reabsorbing it back in his body….but now, they think his brain is a foreign body, so they are now attacking his brain.  Or, it is idiopathic…..he might have had a virus (which he was never sick)…..OR he could get cancer within a few years (neuroblastoma, in his chest cavity).  Most kids have the NB, have it removed, but are still symptomatic.  In January, we will be admitted for 23 hrs and do IViG and Chemo…..good times, again, will be had by all.


Our newest course of action is to add in ACTH.  It is like a steroid on steroids….I have also heard it described as a synthetic hormone that helps your brain to produce Cortisol.  Whatever it is…it is a beast of a medication.  Kids are on this for years. …well, they are on this and when they are weaned, the become symptomatic again and have to restart.  Some kids can move from this to a dex pulse.  Some kids move to oral steroids.  It causes irritability, weight gain, puffyness, jitters, insomnia, hyperactiveness, and all the other things that come along with steroids.  This is not an IV drip, though.  This is a daily shot that I have to administer…IM (in his muscle), in his thigh……with an 18 gauge needle :/  I would use those big ol needles when I would draw blood from a cow and I’m expected to shoot this into my baby everyday for up to 3 yrs?????????!!!!!!!!!!!!!  It is, however, supposed to work quickly….with his symptoms anyway.


Our goal is remission.  I have talked to other moms and their kids took 2 yrs-7 yrs to get into remission.  To be in remission means you are asymptomatic and taking no meds.  These sweet families have encouraged me and helped me understand this is not a sprint…it is a marathon.  The longer Hunter is symptomatic, the more permanent brain damage occurs.  These kids have lasting side effects from the OMS and from the steroids.  There is ADHD, OCD, Rages, learning disabilities, low functioning, and many more things that he could deal with for the rest of his life.  That is a hard pill to swallow.


I get so frustrated when he can’t go to sleep, when he goes from happy to crazy screaming, when he gets violent, or slings food everywhere because he cannot hold his own fork.  If I get so frustrated, I cannot imagine how he feels…..but…..then there was God.


God is still on the throne.  He allowed this to happen for a reason…..this is not catching Him by surprise and He has the perfect provision in mind for Hunter and our family.  I will continue to hold onto hope……I may be swinging from one little frayed end of that rope, but I am hanging on nonetheless.


Kick in the Gut

Image result for I love someone with opsoclonus myoclonus syndrome


So sick of OMS……repeat SO SICK OF OMS.


I was speaking to our doctor’s nurse (she is fantastic btw), and we were discussing how we can get the OT/SLP/PT here at the house through home health.  It has been approved through insurance, but we are finding difficulty in anyone who will work with pediatrics.  It has been a bur in my saddle.


I called our local hospital and they said they could do it.  Yay.  Then the nurse from our doctor’s office called and said she was facing resistance.  She said that because Hunter is “medically fragile” that they will not see him.  He is not a do therapy and get better kind of kid.  He is a do therapy and maintain his status type of kid.


I’m surprised I heard anything past “medically fragile.”  I think I did miss a lot because tose 2 words, used in a sentence with my son, cut me to the core.  The definition of medically fragile is defined as a chronic physical condition which results in a prolonged. dependency on medical care for which daily skilled (nursing) intervention is medically.  Maybe I knew that, deep down…..but hearing it forces me to come to grips with the diagnosis that my son has.


The longer he is symptomatic, the more chance of him having permanent brain damage because this is a neurological condition.  I sit here and watch him and I see that he is shakes….I see that he struggles with walking….I hear his speech issues….his food issues….his eye twitching…..and I think he is medically fragile.  There is no cure.  There are massive drugs he has to take to maintain his health but those drugs have massive side effects that has adverse effects on his health.  It is a double edged sword.


This disease is horrible.  It is uncertain.  It is uncurable, by man’s standards.  I hate it but I’m reminded of my sweet friends Mr Cliff and Ms Jan… I was telling them the latest in the saga of our life, at church one morning, Ms. Jan looked at me and said “but Brandi, you have to remember this one thing…..1 Thess. 5:16-18 “Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” *Emphasis is mine*  It does not say “be joyful when things are great and everyone is behaving and healthy.”  It says to be joyful ALWAYS.  Be thankful in ALL circumstances.


So…what am I thankful for?


He is alive.


He is with us.


He has an amazing support group.


He has doctors who are going above and beyond.


We get the same nurse for every treatment.


I have a great relationship with his mom.


I am able to email his mom and keep her up to date.


My sisters.  My brother.


My parents and my mother in law.


The support of so many people that I know and love and that I don’t know.


A wonderful church, who prays for him.


All our prayer warriors.


Kids who see a need and meet it.


There is so much to be thankful for………….even on the bad days.


Another Update **This was from 12.10.17**

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It has been 6 mths since Hunter was diagnosed with Opsoclonus Myoclonus Syndrome. It has been a LONG HARD road.  I cannot even describe how hard it is to watch him, day in and day out.


Everyday is hard.  I cannot even remember what it was like when he was “normal.”  Where he was 98% potty trained, speaking well, able to eat, sleep….just being sweet.  Now, our days are filled with Parkinson type shaking, slow and methodical speech, hypersomnia or insomnia, not eating well, not drinking well, rages that are beyond a 3 yr old rage.  His eyes dancing, falling all the time….I mean it is hard.


We are all tired.  Hunter is frustrated.  We are, currently, at the hospital getting another round of IViG therapy.  It is a 7-10 hour IV push.  If we do it too fast, he is throwing up, lethargic, arms/legs hurting, head hurting, and all sorts of fun side effects.  When we can stretch it out, some, he has some symptoms but not all of them.  He is usually symptomatic for about 7-10 days after treatment.  Then we have about 10 days of little symptoms, and then it gears back up before our next treatment.  He only has opsoclonus when he is tired…..but within 30 minutes of starting the IV, his eyes started dancing.


Our attending physician (pediatric neurologist), spent a lot of time with us, today and for that, I am grateful.  He listened to my fears, we talked things through, he was as encouraging as he can be with me and he is wonderful with Hunter.  This disease is 1 in 10 million…………most doctors, nurses, ERs, or pediatric neurologists never see this in their lifetime and there is no cure because we don’t always know the reason for onset.  Most times is neuroblastoma that is encapsulated within the chest cavity.  It can and is removed but it does not stop the symptoms.


There is a treatment that we are adding.  ACTH (a mega type steroid that helps your body to produce the hormone cortisol).  It is a beast.  Side effects sucks.  We will do that in combination with IViG (immunotherapy) and Rituximab (chemo).  We start this new drug in January, so we shall see. It is hard to administer (IM shot) and it is hard to get off of.  The longer my son has these OMS symptoms, the more it takes affect on his brain and causes permanent damage.


One day, there will be a reason for OMS and there will be a cure….heck, it could be Dr. Sweeney who finds the cure, on Hunter….who knows.  I’m thankful for the knowledge of Dr. Wendy Mitchell and her consult with our case….just because she is kind and she has seen a lot of these patients.  I’m thankful for our OMO nurse, Kim………., Dr. Sweeney for listening, emailing me back, wanting all information.


God is good….even in times of trials and pain.  He is teaching me.  He is refining me.  He is telling me that I do not control every aspect of life and I cannot control OMS, but He can because He is bigger.


May a cure be found.


Any questions……..please ask!