Tag Archives: Kinsbourne Syndrome

Reflecting on Horse Therapy

Horse Therapy

Horse Therapy

Reflecting on Horse Therapy.  When Life Gives You Lemons, squeeze the crap out of them and smile.  Today has been an emotional one for me.  There has been nothing spectacularly bad happen, just somedays, the magnitude of everything hits me.

Mondays are therapy days and we are SO blessed to have such a great team of therapists that work with Hunter every single week.  They keep a smile on their faces and they encourage Hunter (and me).  We all work well, as a unit, to accomplish the greater goal of seeing Hunter succeed.

Heading to Horse Therapy at Cassidy’s Cause

Tears flowed, as we headed to therapy today.  I just couldn’t keep it together and I can’t stand it when I’m overly emotional.  Hunter was good, ready to go, and happily singing to the music we were playing.  I, however, just let the waterworks flow.

We got there and our OT came with a smile on her face and new blocks to play with.  We worked on getting his Theratog on (what a crapfest that thing has been) properly.  Then, towards the end of the session, I asked the unthinkable.

Do you believe this is helping him?

Our OT is phenomenal.  I mean tenderhearted, great at her job, sincere, loving, God fearing…she is awesome.  She said what I was already feeling.  I believe this is what makes our team good.

She knows the flu season is coming and Hunter cannot get sick.  As well as, she sees the ebbs and flows of his condition.  All the way, teaching me techniques and toys that can help him.  We discussed just taking a break.  She knows I need it.  Just a mental break.  There is also the knowledge that we do work with him here.

Next Up:  Speech

Our SLP is the bomb.  She is firm but good.  The diligence of this woman and how she thinks outside of the box, for Hunter, amazes me.  We had the same conversation, only this time, I lost my composure.

She quietly asked if I wanted to go to another room and then I just sat there and cried.  The kindness this woman showed me humbles my heart.  As she said, “I even buy the good tissue for moments like this.”  LOL.  Another God-fearing woman in this facility.  She walks it and talks it.

We talked about what the OT and I talked about and she agreed.  Again, we are going back in January, but she knows that I’m so tired.  We have worked so hard and the ebbs and flow of ATLD1 is just a beast.

Tony Stark

Last up, is PT.  Tony…I am his fangirl.  He is simply the best PT we have ever met and we have met several.  Tony Stark is not his name, but that is the name that Hunter gave him from day 1.

He is our Ironman.  He has let me sit and cry, while he plays music in the background.  I kid you not.  We have brainstormed, tried new techniques.  I’m not afraid of his suggestions and he is open to mine.

Tony has taught me a level of patience I didn’t think existed.  He loves Jesus, his wife, and his boys.  He loves theatre, music, acting, dancing and his talent for working with his patients is amazing.

Again, he agreed.

horse therapy

Coming Soon

Well, January to be exact.  We are taking a break from our 3 hr per week therapy sessions.  In January, we will come back, retest and regroup.  I am hoping to be refreshed.  Hunter will *almost* be 5 by then.  I’m hoping that he will have gained some weight, as well.

Until then, we are going to be going to Cassidy’s Cause.  It is a Horse Therapy in our local town.  As Jesus would have it, Hunter will get to be in the same class as his sister.  He will get to see her, his brother, and his Mamaw.  There is a strong possibility that his Jojo and Papa will be there too.

Our big kids get to go and volunteer so this will be an all-encompassing family outing every week for an hour.  I’m thrilled at how this will help Hunter with his core and strength.  It will also strengthen the bond between siblings, grandparents, and great-grandparents.

Kick Some Butt

When he comes back to his Power of 3 team, in January, he will kick some butt!  He will show the doctors that he will grow, succeed, and beat this terrible condition.  God is good.  I’m so blessed with the people that have come into my tribe to help my boy.  Until then, we do horse therapy and watch how his ataxia improves.

When Life Gives You Lemons:  Related Posts

We Interrupt This Regularly Scheduled Series

The Ache of Reality

 

 

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Reflecting on the Little Lies Along the Way

Reflecting on the Little Lies Along the Way

Reflecting on the Little Lies Along the Way that causes Fear Amongst Children.  Now, before I move on, I want to say that 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.  There is definitely 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.

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 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 heartbeat)
  • 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)

In the beginning….these statements, I got.

I understood, accepted, and 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 doctors 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

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.

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, 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.

Astonishment

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.

Little Lies Along the Way

^^Photo compliments of Megan Miles^^

Reflecting on Come What May

Come What May.  Hope…..my theme word since May 2015.  Hope showed back up on July 8, 2018….B and I were late for church again (let us have a SHOCKER moment), luckily, he left the kids and me off at the door.  That allowed us to find a seat (in front of our favorite humans, Mr. Cliff and Ms. Jan.  While the kids sat down, I scurried Hunter off to his class.  For the purpose of playing with his “brother” and then I could sit in peace for a few minutes.

Well, God is the God of peace, but He also has an agenda.  As sweet Grace was doing worship, she started a song that I had never heard of “Come What May.”  Gracious.

Come What May:

In death and life, I follow You
In every season, this be true
‘Cause I chose this path and I made this vow
And I will never turn around

Nothing can hold me back from Your love
I’m following You, Jesus
Whatever may come my way

To live is Christ, to die is gain
I give it all for love’s true name
It brands my heart, and now I will rise
To bear the name of Jesus Christ

Nothing can hold me back from Your love
I’m following You, Jesus
Whatever may come my way

Come what may, I will obey
‘Cause I find my joy in bringing You praise

I will obey You, God, whatever man may say 
I stand on promises I know my God has made 
With no regrets in me, my lips will praise Your name 
And though the earth gives way, I will not be afraid 

‘Cause You are the Lord of Lords, You open every door 
You stand in victory, and now my heart is Yours 
I will trust in You, God, and I will not be moved 
When persecution comes, I choose to stand with You

I bolded what stopped me in my tracks.  Again, my head was down, I was singing in my spirit and then when those, unexpected verses (still, I did not know this song) came on…..my body started to react, and my hands were flying up in the air worshipping Jesus.  I almost, just almost, stood on the chair to get closer to God (kind of like southern women who make their hairs real big….the bigger the hair, the closer to God status).

In A Moment

In a moment, I looked over and saw Richie (our pastor) standing by Bart.  He asked if we would be willing to share our testimony about what has been going on.  We said yes, but my mind (flesh) was screaming…I have nothing to say.  I mean nothing is in my head. What on earth?

Things have been tough around my neck of the woods.  Every single child is struggling with something, as are Bart and I.  Our marriage is strained, our minds are twisted, we are feeling very alone, unloved, and with all that is going on……..we still have the massive needs of Hunter.

When this song was over, Richie said that he felt like the Lord was leading him to ask us to speak because man is telling us so much…yet we are trying so hard to seek His face.  There are days, when I seek His face, with my eyes shut.  You know, when children play hide and seek…if their little eyes are closed, they can’t see you and you can’t see me, but we can turn our heads to a voice….that’s kind of like the life we all had been living.

The Baseball Cap…Let Hope Arise

Come What May

Finally, we have answers to our medical questions, in regards to Hunter.  Yet, his doctor is still trying to get us to nail jello to a wall.  First, he has strep, then he has Cerebellitis, then there is the diagnosis of OMS (Opsoclonus Myoclonus Syndrome), next is possibly SCA (Spinocerebellar Ataxia). In the end, he does have 1 copy of the MRE11A mutation on chromosome 11q21, which correlates with ATLD1.  Yet that was still an incorrect diagnosis.  We are back to Opsoclonus Myoclonus Syndrome.  Our fifth (and third) final diagnosis.  Blah blah blah blah.  I am SO sick of listening to the voice of man dictating every aspect of Hunter’s life.  Sick.  Of.  It.

As we got up there, we made it through the testimony….only to be blindsided by a baseball cap……

 

Reflecting on my Slippers

Reflecting on my Slippers

Reflecting on my Slippers.  I have never been a slipper kind of gal.  All slippers 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 want 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 just to give her a vague answer because I really didn’t need anything, but she wanted to give me something.  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.

The Years of Hospitals

In May of 2015 is where my slippers 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 slippers: black, gross, dirty, and washed too many times, well, they are 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.

Reflecting on When I was Gonna Kick Some Butt

Revisit Gonna Kick Some Butt

 

Reflecting on When I was Gonna Kick Some Butt.  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 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…..it’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.

Other Moments

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.

Therapy

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 choppily 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 Opsoclonus Myoclonus Syndrome is neurological.  Pleased to hear he has good articulation, though.

Sleep

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.

Exercise Routine

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.

Gait Walker

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.

Reflecting on my Breakthrough in Letting Go

Reflecting on my Breakthrough in Letting Go

Reflecting on my Breakthrough in Letting Go.

Sometimes I don’t even realize I’m trying to control a situation.  For a year (or more) the Lord has not moved.

Then I sit back and I reflect.

I think about all the phone calls, the late nights researching, the bookmarks I’ve saved, the groups I have stalked, the tests I have read and reread…..but…

Where was my Jesus?

I realized:  ~my depression was stronger ~my prayer life had waned ~my mood was somber ~my temper was short ~my resolve was shorter ~my study life was nonexistent ~my relationships were strained and ~my desire to go to church was void.

On June 17, 2018….I found Jesus again.

I say that knowing that I have always had Jesus.  He has never left me or forsaken me.  Today, He imprinted on me.  He gently turned my head back around to face Him.  I allowed things to happen that I would generally never allow, out of fear.

Fear has no place anymore.

As I wheeled my son in church, late, past 1044 people (not really but it seemed like a lot when your baby is in a wheelchair), I kept my head down.  I tried not to make eye contact with anyone.  If I did, I would melt in a puddle of tears.

Then I turned around.

There stood friend #1 and before I knew it friend #2 walked up.  There was a brief moment where I explained a few things.  Then I had to walk away because I was fixing to lose it.  In no way did I want to release that control and let anyone see me cry.  From the hallway, I hurried back into the sanctuary and we were in the middle of worship.

I couldn’t even open my mouth or my eyes.

I just stood there, in the pew, with my head down.  There were no thoughts in my head.  At that moment, I was trying to hard not to cry because I was with my children.  When they began another song, I found myself walking to the altar to pray.  My feet were moving without the permission of my mind.  I knelt down….and still, there were no words in my head, out of my mouth, I just sat there and absorbed the music.

Mamoo……

As I was praying, I felt a hand and I looked over and Ms. Mamoo was praying over me.  She is the most eccentric woman, I have ever met.  She is stunning with bright blonde and pink hair.  Her legs are to die for and she is about 86 years old.  There is a strength in her.  She kept telling me to “hold on” that healing would happen.  That I need to hold on.  I felt my body release.  Then, I heard these sounds that in thinking back, was me moaning in an animalistic type of way.

The music stopped.

I scurried through a door to gather myself, alone for a moment.  I walked around the corner to check on Hunter.  He was beginning to meltdown because he could not pick up a whale snack.  He kept dropping it and shaking.  As I went in to help him, the ladies said there was a man at the door that wanted to speak to me.

I have never seen him before.

This man was emotional and he asked me to bear with him.  He said he saw me wheel my son past him.  That he felt the Lord leading him to pray over him.  At that moment, he asked permission to do so.  I went back in the room and scooped Hunter up.  In his next request, he asked me if he could hold Hunter.  I was okay with it…strangely, so was Hunter.  Hunter was completely at ease with this man.

His prayer…

What a beautiful prayer of healing this man prayed over my son, in the hallway of the church.  I will never remember all the words he said.  I do remember the stillness of Hunter.  The electricity that was in that little huddle and the tears that were shed by me and this man.  I was humbled.

Faith.

Our sermon was on faith and how you have to basically tie a knot at the end of the last thread you are hanging onto.  You must trust that if you slip, you will land on Jesus’ hand.  This sermon was exactly what I’ve been battling with for the month or so.  Jesus has been working on me to have faith.  To stand strong, to release control because He knew Hunter before He created the earth.  He knew who would carry him and He knew who was going to raise him.  God knew that Hunter would go through this.  He already the perfect provision in mind if I would just get out of the way and stop controlling the situation.

At the end…

I went to get my son.  Hunter was gently placed in his chair and I wheeled him into the sanctuary.  Looking up, I saw Richie, our pastor, and before I knew what I was doing, I wheeled him up to the altar.  At that moment…..the Lord gave me another huge chunk of my rainbow.  As I looked up, people from all over the sanctuary were coming forward to lay hands on Hunter, Bart, and me.  Mamoo anointed him with oil, as she prayed.

There stood men and women, of all ages and children…..all I could hear was a gentle roar of prayers being spoken over our son.  In the midst of that, I felt a hand on my shoulder….it was a familiar hand, with a familiar smell, and a slight tremor….Ms. Jan, through the crowd, touched me.  I never saw her face…I just felt the warmth of her hand and I could hone in on her voice.  Hunter never moved.  He never cried.  He just sat there and took it all in.

God is good, all the time and all the time God is good.

Reflecting on When Enough is Enough

Enough is Enough

Taking the Gloves Off and Reflecting on When Enough is Enough.

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.

In the Details

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.

Be Assertive

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 a nap.

 

    • Opsoclonus is constant.

 

    • Inability to hold utensils and feeding himself

 

    • 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

So Many More

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 doctors.  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.

Determination

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 and he will win.  There will have no side effects because he will be the exception to the rule.

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

 

Reflecting on Getting Shots

Getting Shots

 

Reflecting on Getting Shots.  Who Likes Getting Shots?  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.

IVIG

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.

IV Team

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.

The Drip

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.

Waking Up

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.

Chemo

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.  Now, the B-cells 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.

ACTH

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, puffiness, 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 every day for up to 3 yrs?????????!!!!!!!!!!!!!  It is, however, supposed to work quickly….with his symptoms anyway.

Goal=Remission

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.

Frustration

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.

Faith

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.

 

Reflecting on a Moment I Won’t Soon Forget

I Won't Soon Forget

 

Reflecting on a Moment I Won’t Soon Forget.  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.

Saying Thank You

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.

Donnie

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 a big church and then he would leave as quickly as he could.

Realization

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.  Amazingly, he was there because he wanted to be there.  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 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.  In that time, he fell in love with my mama again.  Also, 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.

Jesus

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, besides 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 🙂

 

So Many Decisions

So Many Decisions

We are Faced With So Many Decisions

With So Many Decisions to make, it is almost overwhelming.  We have to weigh the pros and cons of each thing.  How does A work with B and what if you throw in C to the mix, how does that affect A and B?  Can they all play well in the sandbox together?  What are the side effects?  If A has a side effect, we give medication to offset that, right?  What if C doesn’t agree with the medications to offset the side effects of A?

Confused?  I am.

Decision 1

Which hospital?  Currently, we are at UK Children’s.  We are pleased with his current physician, but the drive is 4.5 hrs and that is tough.  I have to schedule it on Fridays so Big Daddy can go with me.  We leave at about 6 am and get home at about 12 am.  It is a long hard day.

We have an appointment at the end of the month with Vanderbilt Children’s hospital.  It is only about 2 hrs away.  The hospital is amazing, but that is one of the places that Hunter was misdiagnosed at this hospital 2 yrs ago.  That knowledge has put a sour taste in my mouth, to say the least.

I have no idea what we are going to do.  We loved UPMC in Pittsburgh, but to travel that far away is tough.  Doable, but tough.  They had an amazing staff.  Dr. Kavita Thakkar runs the OMS clinic and she is just so kind and good.

Decision 2

Port or no port? He is beginning to develop scar tissue from all the many IVs and blood draws he has had.  We are going to have to do something and I’m thinking a port is what we need to do.

This will help with blood draws, his IVIG can go into it easily, and soon chemo (or plasma exchange).  I feel like this is going to be a good option for us.  What hurts my heart is I don’t want my 5 yr old to need a port.

Decision 3

Cyclophosphamide, Rituximab, or Plasma Exchange.  I am almost 100% certain that Ritux is out.  Hunter had 3 doses of that and it really did nothing for him.  He has to have chemo or the plasma exchange even though he does not have Neuroblastoma.  The longer he is past onset of symptoms, the less likely he is to develop cancer.

Basically, this is maintenance when he is “in remission.”  He will have up to 6 treatments of one of these drugs.  Any more after that can cause lasting damage to his body.  Who am I kidding, we are pumping this child FULL of toxins…heartbreaking.

Decision 4

Part of this decision was made for us.  In order to keep our current neuro, she suggested that we try to do the above (Decision 3) options at home.  In doing that, we would only need to go to Lexington every 3-6 mths.  Sounds good, doesn’t it?

It does until it doesn’t.

We thought we were good to go with having infusions done at the house.  In the 11th hour, the company decided they would not do it.  Their reasons?  1.  He had convulsions (Uhm, no.  He has tremors.  Convulsions and tremors are not the same things).  2.  It takes too long.  They wanted to push it in 3-4 hrs and this is a 6-7 hr push.  I will not yield.  3.  The doctor knows *nothing* about OMS.  Well, sir, no you don’t…but you can learn.

Now we are hearing they want to train us on a different method of infusion, at home.  We are supposed to meet with them at the end of the month to discuss the pros and cons of this approach.

I am not holding my breath.

 

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