Prayer Request

For those of you who believe in the the power of prayer, please pray for my uncle. He is currently in the hospital with Covid. We are praying they can get his oxygen levels up. Please pray for God’s peace that passes all understanding for his family during this time of uncertainty for them.

Lord,

You are good and we thank you for that. We ask for you to give your breath of life into Uncle Jerry right now. We pray his oxygen levels will go up and he will be able to go home soon. Give his family your peace that passes all understanding while they wait.

In Jesus Name,

AMEN!

Thank You!

A BIG thank you to those who donated to the Ronald McDonald House Charities-Upper Midwest! Our team, Sam Strong, raised $1,805!!

Click on the logo below to read more about this awesome charity.

Ronald McDonald House Charities, Upper Midwest logo

I promise updates are coming soon on Mr. Superman Sam. Summer is flying by! For the most part, no news is good news!

2021 RBC Race for the Kids

As most of you know, we hold the Ronald McDonald House (RMH) charity very close to our hearts. It’s a home a way from home for families like us who have experienced a child’s serious illness or injury.

The walk is scheduled for August, 7th, but will be virtual again this year. Although Team Sam Strong can’t walk together, it doesn’t mean families do not have a child with a serious illness or injury and are stuck “living” in a hospital.

Eating and sleeping are not on your mind when you are watching your child fight for their life. RMH offers these essential things to families so they can focus their time and energy on their child.

Please consider making a donation today. Every little bit helps!

Click here to donate to Ronald McDonald House Charities Upper Midwest and help Team Sam Strong reach our goal!

“This is the house that opens its arms, that feels like home, that embraces the children, that comforts the parents. This is the house where families meet, to eat and sleep, to find their strengths and dry their tears, to look forward with hope to better years.”

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Thank you SO much in advance for your donation.

HOME!

After seven days, Sam was able to come home! We are very thankful he is feeling better and it was a short stay, in our world.

If I added correctly, Sam has spent ten plus months of his life in the hospital and he’s only four. That also means he’s spent much more of his life at home. I’m not discounting the time in the hospital. I’m also not saying tears aren’t shed from exhaustion and other things on my part and pain and exhaustion on his. I’m not saying this isn’t REALLY, REALLY hard. I’m not saying to ignore the bad, but in my experience when we focus on the good instead of the bad, it’s harder for the negative to steal your joy.

FaceTime allowed me to stay on the phone with my daughter, off and on, for over three hours to “help” her bake a cake. She had some bumps along the way, but she didn’t give up. It was still pretty good four days later, when I was home to try it. I was a proud mama.

Every time we’re here, most of my family adapts with ease.

Every time we’re here, we meet more great nurses, doctors, respiratory therapists, etc.

Every time we’re here, I learn new tricks to help Sam and I adapt to living in a hospital.

Every time we’re here, Sam steals more hearts.

With an IV in, Sam can only use one hand. I get mesmerized by how he uses his one hand to play when he starts feeling better. The smarty pants even uses his mouth to push toys and objects in place.

This is the life of Sam. We didn’t choose it, but we have learned to adapt, be flexible, and make lemonade out of lemons. And this guy is SO worth it all.

Can’t Catch a Break!

This poor kid! We’ve landed ourselves in the hospital again. His pulmonologist said to bring him in if his symptoms didn’t get better. We brought him in on Tuesday morning. You would think by now, I would pack a “just in case” bag, but I really didn’t think we would be staying. Wrong.

On day two, after all the lab work ups, x-rays, and an ultrasound, Sam has two different tracheitis’ and rotavirus. His medical team and I were actually happy for the rotavirus diagnosis and not something more serious. It’s always nice to have an answer and not continue, what feels like, the guessing game.

He’s being treated for the tracheitis’ and they want to rest his tummy for a few days with IV fluids. He’s still miserable, but I am confident it won’t last too long. Hopefully, we can bust this joint in the next day or two. Hospital stays do not get easier the more you have.

On a side note, his dilation went well last week. He did need to be dilated, BUT his surgeon said we could start planning Cincinnati!!!

Thanks for praying for our sweet little boy and the rest of our family.

Sam Strong!

Covid and Then Some

April was not so fun in this house, but thankfully we have all recovered. Most importantly to us, Sam is okay and we kept him out of the hospital.

It started with me not feeling too great. I already tested negative for Covid earlier in the week because we knew we had been exposed. When I started feeling cruddy, I tested again. Negative. Whew.

I had several rough days. Thank you Lord for home care nursing! On a normal day with Sam, we are incredibly thankful for our home care nurses. When he gets sick, even more grateful. Add me getting sick on top of all that. Home care nurses. No words.

Sam tested negative too, but then started getting sick a few days after I was feeling cruddy. Oh shoot. He was really sick for a good six days. He was on oxygen for four days and all the home therapies we could do that aren’t legal in most homes. We did get very close to having to bring him to the hospital, but we were able to keep him home. Again, home care nurses. Priceless.

About a week later, after I had started feeling better, I couldn’t smell or taste anything. Wait a minute!?!? I went and tested again. As I suspected…positive for Covid. What?! Those of you who have experienced these symptoms of Covid can understand how annoying it is! I’m happy to say it didn’t last too long.

Sam’s pulmonologist sent a nurse to the house to test Sam. Positive. Bummer. There was a lot of praying on my part, that he would be okay and we would be able to keep him out of the hospital.

Sean tested positive. The next day he started feeling cruddy. He was all excited to be able to get some things done around the house, but he was down for the count for almost ten days.

Will and Abby both tested negative, but had to do distance learning until their quarantine was up. Have I ever mentioned how much I love distance learning? Oh yeah, cause I don’t, not even a little. Because Abby ended up testing positive, she was able to go back to school a few days before Will. I’ve stopped trying to make sense of all the Covid rules.

During all this hoopla, I found out my grandma passed away. She was ninety-five, went peacefully, and although she was dealt a hard hand of cards in life, she lived a good life. Her legacy? She loved Jesus, taught us to pray, read our Bible, and have a relationship with Jesus.

Towards the end of her life, she could barely speak. I know she recognized us when my sister and I saw her for the first time in a long time. She clearly said two of my four children’s names. It wasn’t by chance she squeezed the two names out I have fought for on my knees in prayer countless times the past four plus years. I believe it was her heart that said those two names that day.

We didn’t get to go to her funeral, but this is where technology is a blessing. Thank you to my brother-in-law who held his phone up the entire funeral service so I could “be there”.

Me, and how I remember, my sweet Grandma.

While Sam was sick, he was scheduled to have an upper endoscopy to check on his esophagus. As we suspected, surgery needed to be rescheduled.

To recap, Sam’s last dilation was in January. His surgeon told us, when Sam can go for six months without a dilation, he’ll give us the “a-okay” to go to Cincinnati.

Tomorrow, Sam will have his rescheduled procedure. It’s been almost exactly four months since Sam’s last dilation. We are hoping and praying, he will not need to be dilated.

Sam Strong.

Faith Over Fear.

The Extra Chromosome

Today is World Down Syndrome Day. With Sam’s complex medical needs, this has only been another day to us. 

Sam has an extra chromosome.

Sam can’t eat anything by mouth. One hundred percent of his nutrition is via a feeding tube. He breathes through his neck. His current list of diagnoses is longer than I thought could be possible.

If I could take away all the pain and suffering he has gone through, I would.

There aren’t any easy days with Sam, but the beauty of his captivating personality and infectious smile make every day worth it.

I know without a shadow of a doubt, the part I would keep is the extra chromosome.

If you were to take away Sam’s extremely high medical needs, he is the most happy-go-lucky little guy. He smiles with his entire body, from the top of his head to the tips of his toes, and lights up any room he enters.

There are no, “buts” on my love for Sam. I love him unconditionally. Period. End of sentence.

I would give anything to have a healthy little boy with an extra chromosome. Given the chance, I would not take that part away from him. 

He makes me better.

I believe people who have an extra chromosome give us the tiniest glimpse of God’s love for us. The love in my little boy’s heart makes my heart want to explode simply thinking about it.

Sam has an extra chromosome and I am grateful for it.

Today, like any other day, I celebrate Sam’s extra chromosome.

The 10th One

Sam spent his first seven months of his life in the hospital. Since then, he has spent a lot of time in and out of the hospital. Unfortunately, it’s the nature of being a child with a trach (breathing tube). I can’t even begin to tell you the amount of gifts our family received while Sam was in the hospital, and still receive. The outpouring was and is overwhelming in the most heart warming way.

Of the many gifts you receive when you have a child in the hospital, the ones that are tailored to your child’s diagnosis or situation hit you in a way that goes deep into the heart. The gift says, “I have been in your shoes.” For a moment, you don’t feel completely isolated. Someone else has been there. This is a powerful thing.

Jack’s Basket and Fiona’s Hope were those gifts for me. Jack’s Basket is a nonprofit that gives baskets to families to celebrate a diagnosis of Down Syndrome. Enough said. Fiona’s Hope gives baskets to families who have had an extensive stay in a hospital with their child. Again, enough said. To find out more about these two incredible organizations, click on their names.

A long time ago, these two organizations sparked something in me. For over three years, I have been dreaming of giving a basket to families who will take their baby home from the hospital with a trach (breathing tube). A basket that says, “I have been in your shoes.” A basket that says, “You are not alone.” A basket that says, “Although our stories are uniquely different, we share this commonality.”

One year ago in March of 2020, just when Covid was starting to invade us, I delivered my first basket. My heart was overjoyed to be able to bless a family with items that clearly show, they are not the only ones on this journey.

Now, almost a year later, I recently delivered my eleventh basket!!! It’s crazy to think that many babies have gone home with a trach just in Minnesota this past year. The curve balls thrown at each of these families are unimaginable. Each story is unique, but share one common theme.

So, what’s the big deal about the tenth one, you ask? Well, I told myself, after I am able to deliver ten baskets, I have to put it out there. So, here I go. My hope is to be able to bless as many families as I can who have been dealt this difficult, but incredibly rewarding, hand of cards.

Each basket is filled with items that have been or are useful to us. Do you want to see what’s inside the basket?! Click here to see the new page I added to find out more about what’s in each basket.

If you would like to request a basket or donate items, click here to contact me.

If you would like to make a monetary donation, click here. At this time, the donation you make will not be tax deductible. I am in the process of starting a 501(c)(3) nonprofit organization and when that happens your donations will be tax deductible.

Although I feel nervous about “putting it out there”, I am extremely excited at the possibility of being able to brighten a day of more families whose lives have taken a turn down an uncertain road. Things have moved a lot faster than I anticipated!! This week, I will be reaching beyond Minnesota!!