Large Family Happenings, Life or Something Like It

Baby Shower, Bridal Shower, Birthdays, Bathrooms

Baby Shower, Bridal Shower, Birthdays, BathroomsBaby Shower, Bridal Shower, Birthdays, Bathrooms

Can I just say that I can sometimes overwhelm even myself?  Well, I do.  More times than not, I get myself into more things than I should.  So, now I’m in the middle of a Baby Shower, Bridal Shower, Birthdays, Bathrooms.  In between November and the end of March, and (of course) the holidays, there is a lot happening.  We have about 12 birthdays and anniversaries.  Then there is my first grandbaby that will make her appearance.  Now, we have to slap in a baby shower, bridal shower, and a 5-day hospital stay and you have my life in a nutshell.  All birthdays went very well.

Baby Shower

With that being said, a baby shower is a must.  Due to covid restrictions, we did a virtual baby shower at my house.  My sister came and my kids.  We ate, she opened gifts, and we had fun.  She got a ton of stuff for Charleigh Mae and they are very thankful.

It is so surreal to see your daughter pregnant with her first daughter.  She is so beautiful.  This pregnancy has not been easy for her.  She has struggled with all-day sickness, loss of appetite, and all the other fun things that happen.  Yet, she has handled it beautifully.

She is going to be such an amazing little mama.  I can’t even contain my excitement.  Who would have ever thought I’d be excited to be a grandmother.  Honestly, who ever thought I was mature enough to be a grandmother.  Yet, here I am.

Bridal Shower

We had scheduled the shower for a week before the wedding.  I just couldn’t get it all done in such a squashed amount of time.  Sadly, Alyssa got really sick before the shower.  We knew she didn’t have covid19, so we assumed it was a bug or the flu.  Since we weren’t sure, we decided to postpone it.  If it was a stomach bug, Arkie could have gotten it and there are a lot of immunosuppressed people in our lives.

Arkie never got sick, but other things ended up happening.  We had a hospital stay (Hunter) and a snowstorm because that is just how things roll.  It got pushed back to the day before the wedding.  We were trying to get a date that his mom could be there, but due to the storm, it just didn’t happen.

It got done and they had a good time. We were all tired but the kids seemed to enjoy opening their gifts.  Luckily, we got great pictures that I will send to his mom.

Rehearsal

That was something as well.  It seems nothing wanted to go smoothly.  This snowstorm just threw a wrench into all the things.  His family was not able to travel to the rehearsal because they got more snow than we did.  I hated that for them.

We were able to get in and get a lot of decorations done.  Most of the people who were in the wedding was able to come.  I’m so glad there is a trial run because that’s when I got all of my squalling out.  Those songs she picked.  Geez.  I was crying, my mom, the girls…it was a cry fest.

We ordered pizza and just came back to the house to eat.  After eating, they opened gifts.  Then, we cooked for the wedding.  It was a long and crazy night.  After all that was done, we snuggled for a good long time.  Sigh, that girl has my heart.

Bathroom Remodel

To add to our fun, we decided to do a remodel on our bathroom.  A few years ago, my boys got into a scuffle and things happened.  One boy aggrevated another boy.  Then, the other boy pushed the one boy.  That boy’s butt went through my wall.

I have not used that bathroom in a long time because I get so mad that all I see is his full butt print.  There are 2 cheeks and a crack.  I bought stuff to redo it, my way, because we weren’t getting it done any other way.  Bart stepped in and did some work.  Then, he made some phone calls.

Once that happened, all the things happened.  We now have a new shower, the toilet was already fairly new, bought new flooring.  Our friend ordered new closet doors.  The next big thing is to get the sinks out, new ones bought, and installation.

Go Big or Go Home

So, all this stuff, at my house, happened with a torn up bathroom.  That and a front closet FULL of Charleigh Mae’s gifts, a corner in the living room FULL of Alyssa’s gifts, and birthday presents.  Upstairs was full of wedding stuff.  I mean, there is stuff every where and I haven’t known which way is up and which way is down.

Honestly, I wouldn’t know how to do something 1/2 way.  I have got to do it all they way and then add a little spice.  It’s what dreams are made of.

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Family Update February 2021

Family Update February 2021Family Update February 2021

Here is our BUSY Family Update February 2021.  For the shortest month of the year, it *feels* like this month lasted 428 years.  So.  Very.  Busy.  That meme cracks me up.  I’m not sure if it is my guardian angel, my mama, sister, or therapist.  Maybe all of them do that when I tell them something new.  Tis my life.

School

Still, Job Corp is not open.  I believe, to date, one has opened, so that is progress.  Right?  Noah got accepted into MSU and got his financial aid going.  He is figuring things out, so I don’t have to.  We’ve decided that Hunter will have his therapies at school.  Virtual therapy is STUPID.  It is seriously the dumbest thing ever.  He will only be at the school for an hour and a half.  Physical therapy, Occupational Therapy, and Speech will all be done weekly.  Maybe we will see some progress.

As for the boys, Jude is doing well.  He is learning to take his time.  The school gives him the ability to redo his assignments, but not tests or quizzes. He is learning to ask questions and study.  It has been a journey.  Daniel is struggling.  With FASD, it is hard.  Teachers “see” one thing (virtually), yet life is another.  We are going to take him 2x a week for tutoring.  After much back and forth, we adjusted his 504.  Praying that is going to help.

Happenings

There have been lots of birthdays this month.  Grayce, Hunter, Alyssa, Mimi, daddy, and several nephews have celebrated.  Also, we had a wedding shower for Alyssa on Hunter’s birthday.  That is one way to crunch it all in.  Originally, we had a separate day to do their share. Sadly, Alyssa got the flu or a stomach bug.  She was pretty pitiful.  We were not certain what she had, so we canceled until the 19th.  That would be one day before her wedding.

The rehearsal didn’t quite go as planned because there was a major snow/ice moment.  We considered postponing the wedding.  It was touch and go.  Alyssa was a wreck.  Arkie was a rock on the outside, still unsure of what lies beneath.  We got that done, without Arkie’s family.  Sadly, they got more snow than we did and just couldn’t make the trip.  I know that was a hard decision for them to make.

Once home, we did their shower.  Luckily, both my moms were here.  Hannah and Savannah were here.  Once the parents left, we started cooking.  We were all so tired but got it done.  Then, my girl came and snuggled with me until about 2 am.  Sigh.  Worth it all for that moment.

Wedding

All in all, we got it done.  My daughter was breathtaking.  Simply breathtaking.  Arkie.  I tied his tie and saw this sweetness in his eyes.  He really is a sweet boy.  Change is just hard.  Alyssa.  Stunning.  His family was able to come home.  The sun was shining.  Her pictures will be so beautiful with her flowers and the snow.

My mom knocked it out of the park with her flowers, doors, and all the things she creates.  She is brilliant.  My other mom was so helpful.  I’m so thankful my aunt was able to come.  The boys kicked in and helped clean up.  The food was good, the company was good.  Alyssa was so full of joy.  Arkie was so excited about his apple pies.

Health

Big Daddy was diagnosed with diabetes.  He has lost a lot of weight and his sugar levels are really good.  My plantar fasciitis sucks pond water.  That is in my right foot.  In my left foot, I’ve lost feeling in a couple of toes and the top of my foot.  It is due to a bone spur.  Eventually, when I lose feeling in more toes, we’ll address it.  My essential tremors have calmed down as have my psoriasis.

We have some upcoming appointments with Daniel to have him assessed for autism.  Honestly, we have always suspected it but as he gets older, things become more prominent.  Also, we have some upcoming appointments for Jude.  We are hoping to get some help with his FND.  Hunter had a massive treatment that I will address in another post.  So, stay tuned.

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The Reality of my Nightmare

The Reality of my Nightmare

In The Reality of my Nightmare, my guest blogger writes about her interpretation of the trials I have been walking through.  She writes it as if she were me.  I read it the morning of my friends funeral.  She is pretty spot on in all that she said.

The Reality of my Nightmare

Writing this seems like a nightmare

I am waiting to wake up from this nightmare because of how real it feels. But when I open my eyes, it will all go away. No. This nightmare is real. I can’t believe this is happening to me. Why? Why me? What did I do wrong to cause these people to knock on my door? Who has been watching me and observing my every movement?

I am afraid

Afraid to raise my voice even the slightest bit because someone might be watching. Also, I am afraid to take my child to the other room for fear that someone might think I am going to punish them. Afraid to go out in public with my child for fear that someone will judge me the wrong way and call them again. Why me?

Raising Kids

Raising kids is hard, especially 7 of them. They are all so different in so many ways.  Yet, I would not change a single hair on their head because I love them so. I love my kids with every fiber of my being. I would gladly take any strife or burdens off their shoulders.  Honestly, I would put them on my own if it helps them and their future.

My kids are special

Some have mentally challenging issues.  Then, there are others who have some physical issues that need my constant attention. Being a mom is hard. Tiring even. Yet, I am glad God chose these beautiful children to be mine.

I love fiercely and I will do anything in my power to protect them from the world and its temptations. Sometimes, I help others before I think about myself and my needs. I have run myself ragged going in all different directions to help those in need as God calls me to do. Honestly, I try to open myself up to other moms in different clubs and organizations that my kids participate in. I try to help them and converse with them when they need a friend or a shoulder to cry on.

But You

You took care of my child when he played sports on your team.  He became best friends with your kids.  I thought you loved him like one of your own. He stayed at your house and slept over so many nights.  Every time, he had a blast when he came home beaming from ear to ear.  He would tell me all about how fun it is at your house.

Invitation then Betrayal

I invited you into my home which we manage to keep clean amongst the chaos of having multiple children and animals in the house. And yet, you betrayed my trust by calling them. Why? Why me?

You know my child is well-fed.  We give him clothes and things to play with.  Furthermore, we keep him involved in sports. Importantly, we teach him the love of Jesus in everything we do. We fight for him daily because he is different. And that’s okay because I love him so much.

How Would You Feel

You are a mother with kids of your own. How would you feel if someone called them?  They showed up at your doorstep asking to be invited in.  Then ask you probing questions about your home and relationships with your kids? And what if you found out that it was a supposed “friend” who called them on you.

How would you feel?

Betrayed?

Confused?

I should hope so.

Because that is how I felt.

Terrifying Agony

The terrifying agony that my kids could be ripped away from me with no warning. Sadly, the wailing and uncontrollable sobbing happened in my car when I got the call. My heart can’t take it anymore.  I am so tired of having to justify myself to these people. Justify every action that I do and every word that comes out of my mouth.

How would you feel?

Would you demand an explanation from your “friend” and say some nasty things to them in retaliation? Would you constantly be looking over your shoulder to make sure no one was watching you if you ever had to punish your child in public? Or are you one of those parents that let their children run amuck and let them do whatever they want?

Either way, I want you to know that it is understandable if you did not know the family or if you had never been in their home and seen how the family operates. It would be understandable if you didn’t know me or my son at all.

But you did know us.

I was at every game. I talked to you all the time. And yet, you still called them. I thought I could trust you. You have betrayed my trust. But I choose to let God be in control of my situation. I choose to let God be the judge of your actions when you get to Heaven instead of judging you, which I am not called to do.

Honestly, I choose to love like Jesus with skin on and be the city on a hill for you. I choose to let God listen to my sorrowful prayers and collect my tears in a jar. Furthermore, I choose to let God pick me up and comfort me because he knows I am the mom He called me to be. I am not perfect. But God does not call us to be perfect. He calls us to be his disciples and to love our neighbor in his Word.

My house may be messy sometimes and my kids may drive me crazy most days, but in what reality is a house always tidy and the kids always clean and well-behaved? I would love to meet those people and that family.

Haven’t you ever made a mistake as a parent?

Because if you say no that is a bold-faced lie. We fail daily at things but the key is to learn from those mistakes, move on, and leave the past behind us. Those failures are also successes. I have put several of my kids through a full education (and I have homeschooled them for many many years as well).  Two of them have graduated from college, with honors, which is a huge accomplishment.

Mama Pride

One of my kids is married with a baby on the way.  I could not be happier for my sweet child. My smallest child is excelling at things that doctors told us would be impossible.  Yet, with me by his side, he has survived those odds.

The moments of pride I feel for the children that I raised surpasses the moments of sadness that I feel when things like this happen. I choose to find the beauty in the ashes. I will stand tall and not be shaken by people’s opinions of me and my family.

My Choices

So I will also choose to continue to stand by my children and attend every activity, club, and sporting event that they are in. And if you other moms judge me or whisper tall tales about me that are not even true, I will smile and turn the other cheek as God has called me to do. Even if it is the hardest thing I have ever done.

Cruelty of Others

People can be so cruel nowadays and they always look at the plank in someone else’s eye rather than focusing on the speck of dirt that is in their own eye. Words can definitely slice through a person and bring them down when we should be standing together as moms and supporting one another rather than bringing them down and jumping to conclusions by calling the organization before they have the facts straight.

No, we mom’s are not perfect. But we are doing the best we can with the circumstances we are currently in and with the children that the Lord has blessed us with. I will continue to be the city on a hill and shine my light bright for my kids and for you.

And I know deep down in my heart that God will be pleased with my strength and integrity, and when I get to Heaven He will say, “Well done, my good and faithful servant.” I can not wait for that day to come.

In the meantime

I will continue to be the most amazing mom to my kids and be a faithful spouse to my husband. Showing them the light of God.  Continuing to shield them from the World will be a lifelong journey, but I would not change one thing about it. Not for you and not for any other mom who says a spiteful word towards me.

I will pray for you even though it is painful. Because in my darkest moments is when I cling to Jesus the most, and when my faith is tested, I come out stronger than ever because my Redeemer is with me. No more hiding. No more fear. I will not be afraid.

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Update on my Family

Update on my Family

Update on my Family

Well, I guess it is time for an Update on my Family.  It has been a while since I’ve given one and I guess it is long overdue.  Can I just say, I am SUPER glad September is over!  That whole month weighed so heavily on my heart.  Reading the stories, reflecting on my journey, and just allowing myself to feel.  Suicide is a real thing and it is out of control if you ask me.  Please, check on your friends and family.  Spread love and kindness.  Help.  Be an ear.  God is so much bigger than that moment of uncertainty!

Bug & Ben

They are still married (yay) and are doing well.  Still young, still got a lot to learn, still navigating all the things but all in all, things are good.  They are both working from home, so that is a LOT of togetherness!  In that togetherness, they forgot to be socially distant and are now expecting a little one.

Let me repeat.

They.  Are.  Expecting.  A.  Little.  One.

One more time for those in the back.

I AM GOING TO BE A GRANDMOTHER.

Breathe.  It’s fine.  I’m fine.  Breathe.

Don’t get me wrong, Flash and I are excited to meet each other.  Hunter named the baby Flash because well, he is 6.  We don’t know if it is a boy or girl.  Honestly, I could care less.  I used to think that was a crock of crap when people said that.  Now, I get it.  I truly don’t care.  So, I am going to be Lolli and Big Daddy will be Pop.

Get it?  I wanted us to be Harriet and Nels or Alice and Mr. Edwards.  Only Bug agreed with that, no one else did.  Whatever.

Peach

My girl did it.  She graduated college with her Bachelor of Science.  Sadly, her last semester had to be done virtually because of stupid co-vid, but she did it.  Come November, she is walking for graduation.  I could not be more proud of her.  I mean, geez.  She is brilliant and beautiful.

Trying to find that “big girl job” has been tedious, but she is working.  It is not her dream job but that will come.  She really is good at what she is doing, it is just hard emotionally.  Her niche is geriatrics.  She loves the elderly and has such respect for them.  The love and grace she shows in working with them…the respect.  She is her mother’s daughter.

Echo has a friend now.  My Ted moved in with them and so did Maureen Kitty.  She is a plant mama and has a cute little apartment that she has decorated so pretty.  This girl of mine…she is going places (just not too far from me!)

Gigi

It’s been a hard summer.  Honestly, it’s been a hard 13 years.  I am not going into any detail because my head and heart simply can’t.  This month, she will be attending school, away from us.  She will be learning a trade and life skills to move forward in her life.  This has been a hard decision for us to make but it is necessary.

For 2 months, we were blessed with the best gift, at the perfect time.  A friend offered to let her come to her house for a couple of months to let life settle a bit.  It gave us all time apart to heal and reflect on what is best for her and the rest of our family.

I pray the Lord guides her every step.

Boo

Well, he still has a female friend and has mentioned moving out.  As I choke back on my vomit and tears, I now refuse to discuss it.  I was pretty good about the girls moving out, but why oh why am I struggling.  Geez.  His little female friend has captured my heart.  She is a sweet girl, though we often talk about making space for Jesus when they sit too close to each other!

He is still in college and loving it.  I think he wants to be a sports journalist.  He loves sports and he has discovered that he loves writing.  In his job, he left his first job for another and then left that one for the first one because he was going to be promoted.  He is a hard worker but his room is a pigsty.  I just don’t get it.

Catfish

Due to the events of the summer, D is away at school until December.  Some things occurred where it was necessary for him to be away.  I email him.  He writes (when he remembers) and he calls every Friday.  Some are good calls and some, he just misses his mama.  I sure do miss him but I know he is learning so much.  Thankfully, this school is geared towards the career that he is wanting to pursue.

Sadly, he got co-vid (well, he and 13 other boys).  That was crappy but luckily they were asymptomatic.  We have had to send him a lot of soap LOL and shoes.  He is wearing them out!  Thankfully, he is learning and working through the events of this summer and processing some of his choices.  I am super proud of him.

Jude

He doesn’t have a nickname…wonder how that happened?  I’ll have to think of one.  He is “virtually” schooling from August until December.  I am hoping he will be back in school in January.  The past year, we have been struggling and fighting to figure out what has been going on with him.  This summer, we finally got our answer.

He has Functional Neurological Disorder.  In normal terms, he has narcolepsy.  Let me tell you, it is not like what you see in the movies.  It has been so hard.  In the midst of all the testing for Idiopathic Hypersomnia (which turned out to be FND), we stumbled on Epilepsy.  Yep, you read that right.  He also has Generalized Epilepsy.

Triggers

His triggers are stress and lack of sleep.  We have had TONS of stress this summer and he has narcolepsy, so there is your lack of sleep.  He had his first grand mal seizure and that is something I never want to see again in the history of ever.

Kid

Good grief.  He is busy.  So.  Very.  Busy.  He talks.  All.  The.  Time.  He is virtually schooling and doing pretty well.  Amazingly enough, he has promoted up a reading level…to HIS reading level on HIS grade!  He is reading so well.  Treatments are going as well as they can.  His OMS is still there and prevalent, but he compensates like a beast.

He is getting so tall and loves being outside.  His favorite thing to do is run.  “Mom, I just need to run.”  I can think about it when he was in a wheelchair.  Most days, I just sit and watch him run back and forth through the yard and I smile.  This child is fearless.  He brings joy to my heart.

As For Us

We are healing, as a family.  Big Daddy is adjusting to working from home.  I’m looking at going back to work part-time.  We have A LOT of kittens.  When they are weaned, we are getting the mama’s fixed so we don’t have to worry about that anymore.  I know you want to know their names…right?  In no particular order:

Karen, Inez, Joan, Janis, Joplin, Lloyd, Linda, Lonnie, Ronnie, Roger, Kim, Pat, Wenago, Tibebu, Ephraim, and Bart.

So freaking cute.  I love cats.

I guess that is all for now…until next time.

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3 Years Ago Today

3 Years Ago Today

3 Years Ago Today

At 4:30 pm, 3 Years Ago Today, our lives changed forever.  Opsoclonus Myoclonus Syndrome began to rear its ugly head.  Our lives were altered.  There has not been one person, in our home, that was not affected by this devastating condition.

This day comes and goes, for most people.  In our world, today, we see Co-Vid19, racism, and protests.  It seems like everything is falling apart.  In lieu of those horrendous things, I stop today and give thanks that my son is still alive.

Treatments

In the course of 36 mths, he has had

  • A bazillion IVs
  • 28 IVIG treatments which equal almost 250 hrs in a hospital
  • 2 Lumbar Punctures
  • 3 MRIs
  • 1 EEG
  • A bazillion labs
  • The second highest genetics battery of testing
  • 5 diagnosis’
  • 46 ACTH shots in the thigh
  • Countless high dose rounds of Dexamethasone
  • 3 rounds of Chemo
  • 5 hospitals
  • Countless stays in said hospitals
  • A Make A Wish trip
  • Wheelchair-bound for months
  • Gait walker dependent for months
  • Ramp installation
  • Multiple rounds of high/low-frequency acupuncture
  • Bioimpedance
  • Amish Iridology
  • A death sentence

My Son

He is a warrior.  This child has been prayed over by hundreds of people.  Donations have helped us travel many miles to seek help.  Many tears have been shed.  Faith has been torn down and redeveloped.  Hope has abounded.  In 2017, our lives changed.  2018, we were given a new diagnosis and told to take him home until he “succumbs.”  In 2019, we got the “old” diagnosis back and were given hope.  Now, in 2020, my baby is not only alive but has graduated from kindergarten and lost 2 teeth.

How I Feel

My gut aches.  I am physically ill at the pain that he has gone through.  There has been great pain.  No one will ever know what he and I have been through together.  There is a bond that we have because through it all, it’s been Hunter and me.  Bart has been amazing.  He goes when he can.  The support, love, devotion, and still have to deal with other kids and a full-time job.  My children.  Family.  Church.  Friends.

I know Christ died on the cross to heal Hunter.  It just has not manifested, completely in his body.  We still do treatments every month.  He still struggles in some areas and tremors are always there.  We still worry about when he gets sick and a flare-up.  I still carry around the “what-if” guilt.  It is still there and I am now praying for deliverance for that guilt.

My Baby

He is busy.  Mouthy.  He pees on kittens occasionally.  There are still some fits, tremors, eye twitches, and speech issues.  Yet, there are no more rages (praise God), no more ACTH shots, no more OCD (for the most part) issues.  Treatments are easier because he is a pro at getting an IV.  Meds are taken with grace and not a fight.  He is aware that he has OMS and is learning about his condition.

My baby runs, plays baseball, jumps, dances, and says things like “Taco Tuesday and Hump Day.”  He has changed his name from Hunter to Kid to Mario.  I’m no longer “mom” because that is old, done, gone…I am not Princess Peach.  He apologizes when he is wrong.  Loves to have me smell his hair and say “it smells like rainbows and sunshine” after a bath.

He is alive.  Death from OMS is not in his future.  God has big plans for him and He has allowed me to be front and center.  The phrase God is good all the time and all the time God is good runs through my head.  I never thought I’d be able to say that and mean that again.

Yet…He is good.

 

Medical Issues

Hunter’s Song

Hunter's SongHunter’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

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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, at 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 a 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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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 to.  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

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 them 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 they 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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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.

Yesterday, at Vanderbilt Children’s Hospital, the thought came back up.  I saw this honey of a boy walkthrough 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.

You can zoom in to 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

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.

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