Medical Issues, Opsoclonus Myoclonus Syndrome

9 Simple Ways to Prepare For a Hospital Stay

9 Simple Ways to Prepare For a Hospital Stay

9 Simple Ways to Prepare For a Hospital Stay {With a Medically Fragile Toddler}

Here are 9 Simple Ways to Prepare For a Hospital Stay. I have compiled this list because long, extended hospital stays have been my jam between 2015-2018.

~ Buy a nice overnight bag: preferably with a zippered bottom and a shoulder strap

I got this WEEKENDER BAG from Modcloth. I got a cashback from Rakuten (formerly Ebates) and found a coupon online.

~ Have a toiletry case that can be folded up

A bag for your toiletries. In it, I have a toothbrush, toothpaste, trial size dry shampoo (this is a must), face wipes, and deodorant. I pack a razor, body wash, shampoo, conditioner, hair bands, the baby, a toothbrush, and toothpaste. You must not forget a mini first aid kit, fingernail clippers, or lotion. Everything I keep at the house, only smaller 😉

~ Electronics Bag

Spare phone cord, earbuds, tablet charger

~ Crossword puzzle/pen

~ 2 Extra sets of clothes that will stay in your bag at all times

I have some for H and me.

~ Spare pair of slippers/fuzzy socks/flip flops

~ Small Backpack

I keep H’s special “hospital” toys, extra pull-ups, and extra wipes.

~ Mini-med holder

Here, I have a week’s worth of my regular medication. I found some SMALL BAGGIES where I keep: Tylenol, ibuprofen, car sickness meds, meclizine (I have Meniere’s Disease), stomach pills (Pepto in pill form), Zofran, children’s Tylenol and syringe, Aleve, and tums. I have them all labeled well and keep them all together in this small bag.

~ Candy

Never miss the candy!


I keep my weekender packed with these things all the time. That way, when I go for a hospital stay for H, I am ready without stressing out over what I need to bring or overpacking.

It is horrible to be alone with a sick toddler heading 4 hrs away for a hospital stay and having to haul him, his stroller, and a bunch of bags and knowing that I have to pack it all, by myself, in one haul because I cannot leave him alone in the hospital room.

I learned that the hard way.

Now, all I have to grab on go day is my coke, his sippy cup, some snacks, a couple of movies for the trip, my tablet, his tablet, and his blanket because everything else is always packed and sitting in my closet.

Having a medically fragile child and living hours away from the closest children’s hospital is not fun, but I have to make things as easy as possible to keep my sanity.


Life or Something Like It

Wonder From the Eyes of the Typical

Wonder From the Eyes of the Typical

Wonder From the Eyes of the Typical

Wonder From the Eyes of the Typical kid has inched into my brain. I use the words “typical” and “atypical” loosely. In my world, there are no “typical” kids or people. We are all a bit screwy from time to time. That is what makes the world an exciting place to live. Not being all alike, it gives areas flavor and personality.

My Reason

I used that terminology because of the movie “Wonder” that I watched last night. You can find a Christian review on this film at Plugged in Online to learn more about the different content of this movie.

They used the word “typical” in the film while referencing their oldest daughter, Via. Their youngest son, Auggie, was born with a deformity. He, too, was a biological child. For the most part, I enjoyed this movie, though it hurt my heart.

My Thoughts

This movie did not depict the strain that raising a medically fragile child can have on a marriage. The ‘parents’ seemed to get along great, and there didn’t seem to be underlying anger/hurt/resentment towards one another.

That, right there, is why this is a movie and not real life.

Raising children with special needs, whether mental, physical, life-altering, terminal, etc., have a great deal of strain on any couple. The pressure does not discriminate on whether the parents are married, co-parenting, etc. It isn’t easy. I know why people do not stay married. The all-consuming nature of special needs children is just that, all-consuming.

The Typical Child

What I feel they were pretty spot-on with is the feeling of the older daughter. The child in the shadows. The child you just let skate on and upward with because they know not to make waves. These children have learned to problem solve, maintain, and stay calm on the outside when their insides are screaming.

Guilt begins to permeate.

This movie made me think about my ‘typical’ kids and what they have seen/heard throughout the years. The pain is unbearable at the thought that I have swooshed them under the rug because I was busy putting out fires of my ‘atypical’ kids.

My kids’ needs range from minor to significant things. We have dealt with everything from Dyslexia to Mild Mental Deficit. Splash in Reactive Attachment Disorder, Fetal Alcohol Syndrome, Deafness, and Opsoclonus Myoclonus Syndrome. You will have my kids in a nutshell.

Be Careful Little Eyes What You See

My kids have seen SO much over the years. I’m so blessed that they are so aware of God and follow (mostly) in His forgiving ways. To think back, it makes me shudder to remember the looks on their faces when the violence would ensue.

I can still hear the still, small voices saying “mama stop” when I had had enough. The fear that would splash across their faces when one child would rage for hours on end. This child destroyed anything and anybody in the path of the tornado rage that was bearing down on us.

My kids didn’t have anyone over. It was not safe at times. They saw me cry more times than I could count. I have learned, over the years, to be mindful of catching my emotions before they run amuck.

Did I lose track of them in those years? Was there too long of a delay before I had had my belly full? Did my other children go unnoticed because of the acts/behaviors of one or two kids?

Be Careful Little Ears What You Hear

The things my kids have heard are horrible. The threats, the evil spewed out, the anger that flows like lava. They have listened to it all. One day, amid a storm (figurative, not literal), I noticed my son. God love him. He was corraling the other children to the back of the house.

I realized that day that he was moving them to safety. He wanted to protect their little eyes and ears from all that was going down. It was at that moment that I took control back.

No more was I going to let Satan rule my house. I was done, oh so done. Everything that I was “taught” to do by the so-called foster care rules, my church, my family, friends, other caregivers, therapists, and doctors…nothing worked.

It was time that I saw the other little faces, and I stopped the insanity that had ruled my home, mind, and heart for too long. I began to stop seeking approval from those that did not have my family’s best interest in mind. There were no more doctors, medications, or therapists. I was done.

James 4:7

Submit to God. Resist the devil. He will flee.”  James 4:7 This was the verse I would chant while the world raged around me. We made tough decisions in regards to one of our children. A decision that I tried to back out of, but my family and my physician said it was for the best. Tough decisions are sometimes the hardest ones to make but also necessary for survival.

Reflecting on our past is not all a bad thing. I must be mindful to capture the thoughts that are not of God and put them in the place they should be in my mind. From the beginning of time, he knew the children that I would have, and He has made perfect provisions for each of them. I’m so thankful that He has guarded the hearts of our typical and atypical kids from remembering everything.

Hang tough, fellow mamas in the trenches. God has our backs!


Medical Issues, Opsoclonus Myoclonus Syndrome, Vacation Days

Make A Wish Foundation

Make A Wish Foundation

Make A Wish Foundation

Yesterday, my cell phone rang, and I didn’t answer it. I do not answer numbers I do not recognize, as I know it is probably a telemarketer, and I do not want to deal with that. If someone needs me that is not a telemarketer, I know they will leave me a message. Little did I know it was the coordinator for the Make A Wish Foundation.

Well, this time, this person left a message.

I checked my message and realized that I genuinely needed to speak to this person. Hesitantly, I called back because, on one side, I didn’t want to hear what she had to say. On the other hand, I did want to hear what she had to say. I’m sure I’m not the only person ever to think/feel that.


This lady was from the MAKE A WISH foundation. I had, on a whim, filled out the info for this foundation to see if H qualified. Sadly, I thought that kids, who had cancer or were terminally ill, got to make a wish for a final trip for themselves and their families before Jesus called them home.

Times Have Changed

Times have changed. The Make A Wish foundation still does that for terminally ill kiddoes, but now (they may have always done this, but it is new to me), they extend this wish to kids with life-altering diseases. I had to check my pride and sanity and not admit that he has a life-altering illness to complete this paperwork. Sadly, I cried through the whole thing. Maybe he isn’t as bad as I think he is. Perhaps this is just an “it will pass” type thing.

Medically Fragile

Then I heard the words, “your son is medically fragile.” I listened to the words, “the longer he stays symptomatic, the more permanent brain damage is done.” Next was “we want to help him maintain and not lose any more abilities.” Then, my 3 yr old son looks at me and asks for his walker because it hurts to walk or he can’t do something. That gut punches me.

Mounds of Paperwork

I filled that paperwork out about a month ago. I didn’t forget about it, but I didn’t pursue it either. Then, I was facing it, and the phone rang. I did not answer it. There was a moment when I listened to my voicemail. Then, I felt the warmth of tears filling my eyes. I called. H was going to be granted a wish. I am humbled. I am sad. I’m excited for him to be allowed to be a kid without being surrounded by medical staff. I have all these emotions that I have a hard time processing.

Processing Emotions

I thanked them profusely. There was a point when I tried to explain to H that we would see Mickey Mouse. Also, I told my other kids, my husband, and my sister. I should have had a more exciting inflection in my voice. My kids should have been more excited. Yet, we all knew the magnitude of his condition and that his case was reviewed, and just by reading it on paper, he qualified.

We will get excited, eventually. I will plan things. We are SO grateful for the opportunity, and it will be nice to get away for a little bit without stressing about 5000 different things. I meet up with a couple of adoptive families I have come to love through Facebook. There are so many good things that will come out of this.

God is Still Good

God is good. I foresaw this ordeal before He created the Earth. He is showing us another bit of my rainbow, and I’m so thankful. But I’d rather see my son healthy than going on a vacation. Until then, we are heading to Disney.

Thank You, Make a Wish and Give Kids The World

Thank you, Make A Wish Foundation. Please know that you can donate your time, flight points, or volunteer your time for this excellent foundation. One day, when I get done raising kids, I foresee myself doing all I can to see other families in my situation have some joy during their hard times.