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Sam’s Surgery

It’s official. Sam’s next, and hopefully, final surgery is scheduled for October 29th! I know I have said that before, but hope is a much better outlook then fear. I will choose hope over despair any day. It’s what gets me through my everyday.

Before Sam’s appointment to see if we could schedule his surgery or not, I fell upon some reviews on his doctor. I felt so sad after reading. Let’s just say, I couldn’t believe, was a little offended, and quite frankly, appalled at some of the comments I read. You guessed it, they were not good.

We have known this doctor for two years now. He has performed two of Sam’s many surgeries. In our opinion, he communicates very clearly, listens to our concerns, pays attention to every detail, and is extremely kind. Our homecare nurses, who have met him, would hands down, agree.

I shared beforehand with the nurse who came with us to the appointment, and who had never met this doctor previously, about the reviews I had read. After meeting him, she too couldn’t believe the terrible reviews he had. She thought he was wonderful. What’s sad, is I thought, maybe, I would find something negative about him. I didn’t and I’m glad I didn’t. I only trusted him more and know he will do everything he can for Sam.

On one occasion, when Sam still lived in the hospital, after another cardiac arrest, he left his clinic, told me we had been through so much, hugged me, and left the hospital. So, when I read people felt his bedside manner was terrible, I wanted to jump through the screen and tell them what he has done for my son and our family, and how wrong they were to make a hasty judgement on an incredible doctor and surgeon who cares deeply about his patients.

So like I said a few years ago, be careful before you “Google it”. This same doctor has also been rated a top doctor by MN monthly for several years in a row. I realize I’m a bit bias, but I think if you were in my shoes, you might feel the same way. He has literally saved my son’s life.

Please pray Sam continues to stay healthy for surgery. He has been fighting something, but seems to be fighting it off on his own for the most part. We’ve had to boost his nebs and give him some steroids, but that’s HUGE progress for him from in the past!

Sam Strong!

Many Thanks to the Gopher Football Program

20180923_182602Because of Sam, his great story, and a simple oar we made for the Gopher Spring Game in April of 2017, we were recently invited to a closed Gopher football practice. We went not expecting much. We were just excited to be up close with the team. Coach Fleck thanked us for coming and sincerely interacted with each of us.

The Gophers went above and beyond. After practice, every single player came by, signed a poster for Will and greeted each one of us personally. Inside, I was a nervous wreck as most of them were high fiving Sam. Remember, a simple cold can easily send Sam to the hospital. After, Sean and I discussed whether or not we should have stopped them. It made me feel better knowing Sean felt the same way. It was so endearing watching Sam’s reactions as well as the players while their massive hands high fived Sam’s tiny hand. Don’t worry, we sanitized the heck out of his hands after. As always, anytime we take Sam in public, we are all on high alert for the next three days, hoping and praying he doesn’t get sick. All clear this time!

It’s not over yet.

20180923_183849After the personal autograph session, we had a personal tour of their beautiful training facility. Will use to say he wanted to go Harvard, then it was Stanford, and now he wants to go to the University of Minnesota and play football for the Gophers. After our personal tour, I’m not so sure his decision will waver again. Both Sean, a Gopher football fan through and through, and Will were in heaven.

On our way home, Will said, “Sometimes, when Sam’s taking up all of my time, I think, I wish you were normal, and then we get to do things like this.” I, of course, started crying. Will responds, “Mom, that’s like the third time you’ve cried today.” There were several reasons I was crying, but mostly, my heart was extra full.

His comment threw me a little off guard. You see, Will has never once complained about Sam and how much work he can be. Will is so good with Sam. I love to watch how much he loves him and interacts with him. I am happy Will feels he can express his feelings. I reassured him those thoughts were completely normal, I was glad he felt he could share them, and not to stop.

Those of you who are not familiar with the Gophers head coach, P.J. Fleck and where his “Row the Boat” mantra came from, take a minute to watch this video.

Do you know there are people out there who mock “Row the Boat”?! It breaks my heart. Like P.J. Fleck told us, when you allow your life to go public, people will scrutinize. That’s true, but you have to be strong in order to put up with the scrutiny, especially when it relates to losing a child.

Although not planned, the other family from the Pioneer Press article was there also. Wow, what an incredible family. I’m not going to lie, it felt a little uncomfortable. I imagine, the wounds are still very fresh as it wasn’t very long ago, they lost their daughter. Although, I believe, grief has no time limit. Time and faith might make life a little easier, but it doesn’t heal the pain and heartache of losing a child. Life with Sam might be tough sometimes, but I’ll it say over and over again, we got to take him home. My heart aches for those who don’t get to do that. Thank you to the Conn family who were so warm and welcoming to us.

Thank you to P.J. Fleck, the rest of the staff, and all of the players who made my son’s (and secretly my husband’s) day, and maybe year. Sam probably won’t remember it, but I know, the rest of us will.

Row the Boat!

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Sam Strong Oar
Can you find our “Sam Strong” oar?!

Thank You for the Prayers

Thank you for continued prayers for my cousin’s husband. The reason for my the emergency surgery was because he had the strongest or worst type of a MRSA infection. The infection started in his shoulder and moved to his spine. So scary! Unfortunately, he is more susceptible to MRSA because of other health conditions, which make it harder for his body to fight off.

The good news is, he has been doing a lot better! He has been able to walk more with a walker. Please keep him and the family in your prayers as he continues to recover.

Sam Update

I recently realized I hadn’t given an update on all Sam’s procedures done at the beginning of June. No news is good news, right?! Pretty much…

As we suspected, Sam’s MRI was mostly normal. We have nothing to worry about. His pediatrician was a little worried about his head size only being in the less than one percentile. I wasn’t worried, his head fits his tiny body. The MRI only proved that.

All of Sam’s biopsies came back negative. Yay! They did find some gastric tissue in his esophagus, but that isn’t anything they are worried about. It most likely happened at the anastomosis, or in layman’s terms, when they connected his esophagus to his stomach way back when.

Both Sam’s GI surgeon and GI doctor were stumped on what was going on with him. It didn’t seem right dilating Sam would solve the retching issues for a little while. His GI doctor suggested Sam might have Cyclic Vomiting Syndrome as it seemed to be the only thing that would make sense at this point. It still doesn’t make sense why dilating his esophagus would seem to solve the problem the last few times, but for whatever reason it did. Bottom line, his GI surgeon knew that didn’t sit right with him so he consulted Sam’s GI doctor. Everyone is doing what they can, when they can. Trust me, I know they lose sleep over Sam.

After the day of unsolved mysteries, they decided to do two things. They started him on a new med that would treat the Cyclic Vomiting Syndrome, and also put in an order to do testing while he’s having the obnoxious episodes of retching. We are way past the time he would have terrible days of non-stop retching so the new med seems to have solved the problem. This time, like so many others, goes to show what happens when doctors collaborate. We are so blessed to have the care team Sam has.

Sam has been doing awesome. Now, knock on wood. His GI surgeon and ENT surgeon talked and decided they are very happy Sam is doing so well, but they would both like to see him do really well for two to four months before we talk about scheduling his next big surgery. That means Sam has to stay healthy along with very little retching episodes until the end of August. So far, so good.

We’ve never gone longer than a month without something going wrong with Sam. It’s been over two months since Sam’s had any issues! It’s kind of a weird feeling. There’s a part of me sitting on edge waiting for the next thing. And the other part is rejoicing and hoping/praying this will continue. Pray it does!

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Mateo

Sweet, little Mateo is going to be okay. He’s pretty banged up, but considering his fall, he should be a lot more than that.

Read the comment below from Denisse, Mateo’s aunt, to see how he is doing.

He is truly a miracle. God bless him and his family. Pray for them and Mateo’s continued healing.


Jamie, thank you for sharing this post about Mateo. This is Denisse, Alma’s daughter, Mateo’s aunt. Your beautiful words, prayers and support mean a lot to our family. I couldn’t hold my tears when reading your post and looking at Mateo’s beautiful face. We went thru a real nightmare but we could always manage to find hope in God, knowing that Mateo was conscious the whole time and after the terrible fall I knew an angel of God was with him since the first second, till know and forever. Mateo is living testimony of God’s fidelity and love. We are forever thankful for all your prayers and with God’s grace.

Please continue having him on your prayers, he is doing great with every second that passes, doctors are in awe but I’m sure they can see the hand of God. Mateo is out of intensive care, he does not have any brain or internal damage. He only has two fractures in his face but the specialist said that he won’t require surgery (upon further evaluation). His little face is very swollen. He can see, move, play and recognizes all of us. He is active and eager to get back on his feet and go home.

Thank you again for having him on your prayers and hope to meet you and little Sam soon! I have read about him and hear a lot about him and can’t wait to meet the special bundle of joy and love he is.

Blessing to your family,

Denisse