Procedures

Overall, Sam’s procedures went well. When we checked in, there was gal training, the receptionist told her, ”Sam is a frequent flyer here.” He put on the charm for the gal training and she was, of course, taken, ”That smile,” she said. "He just made my day." Yeah, he does that.

The PTSD unfortunately kicked in way before we saw the purple pj’s. As soon as we walked through the second set of automatic double doors, he knew exactly where we were. Poor buddy, became instantly stressed, but made sure he brought on the charm for a few minutes to show off how, he knew without being told, to step on the scale and then pointed to the place on the wall where he would get measured. He bounced off the scale and stood under the wall chart to be measured. Many familiar faces said, ”Hi Sam!” in the process.

The purple pj’s came into play now. The stress level was pretty high at this point. So thankful for the nurse who thought of and agreed to wait for the Versed to kick in until we put on the dreaded purple pj’s. Later, the anesthesiologist said, ”Just leave him in his diaper!” That’s exactly what we did, even after the Versed kicked in.

“I know what’s about to happen to me and I don’t like it.”

Oh boy do I love and hate Versed all in one. It takes Sam’s stress away almost instantaneously, but also makes him really loopy, which can be a little creepy to watch your baby experience.

The MRI results we don’t know yet and the ENT portion went well. Sam’s ENT is a bit new to us. He was very excited to look inside Sam’s airway as he hasn’t yet seen it. He confirmed Sam has a Type II Laryngeal Cleft. Shoot, it's still there. Sam’s previous ENT is getting close to retirement and moved to Arizona to help start a new program. Although we were very sad to loose him, the transition has gone very well. His new ENT trained closely, and is on a first name basis with the Sam’s doctors in Cincinnati. Bonus.

We felt like a deer in headlights with the GI portion, but for the most part, we got it all sorted out the next day. Unfortunately, they placed a gj-tube in Sam again, which is a more complicated type of feeding tube then Sam’s had for a while. Sam did not need to be dilated and there weren’t any clear anatomical answers for his GI concerns. We will wait for the biopsy results.

“Glad that’s over.” He didn't even seem to notice how they snuck on the the purple p.j.'s during surgery.

Now let’s hold onto our seatbelts, and pray nothing holds us back from getting on that airplane next week! The planning and preparation for traveling with a kid like Sam is insane, but what a privilege. Thanks to our friend who nominated us in 2019, the MN Vikings, and the Best Christmas Ever, we’re spending Christmas on the beach!

Merry Christmas!

Wishing you and your family a very Merry Christmas!

Best Christmas E...v...er!

Well, I'm overwhelmed again and it's not because things aren't going well. Again, it's the opposite.

We were shocked and surprised when our friends showed up at our door the week before Christmas with gifts...so...many...gifts. I tried to ask what was going on and everyone just ignored me. Then, strangers started to follow with even more wrapped presents! The presents kept coming and everyone kept ignoring me! After the gifts were literally overflowing in our living room one of the strangers with the sweetest, kindest smile began to talk. I don't remember much of what she said. I remember hearing, We are here with the Vikings and the Best Christmas Ever and your friends nominated you...

I don't know if I was sobbing before or after that, I just know the tears were flowing off and on A LOT that night.

The sweet gal from the Vikings had our friend read what she wrote to nominate our family for the Best Christmas Ever. You know when the tears are falling so fast down your cheeks, you can barely catch the next one? Yeah, that was me during that little reading. I just kept thinking, we do not deserve all of this. Yeah, I still feel that way, especially after all we've been blessed with in the last few months.

We were given SO MUCH stuff, from a trip for our family to anywhere warm to Sesame Street pjs for Sam. Things we could easily do without, but those things put some pretty big, heart felt smiles on my kids faces. Okay, okay ours too. I got a KitchenAid mixer, something I've always wanted, but either couldn't or just didn't feel right about buying in the past.

We have been beyond blessed by our family, friends, and strangers the past three years, but this year has been over the top.

Honestly, I'm still in shock and it all feels so undeserving. I get a lump in my throat each time I think about the whole thing. Why us?

I guess I tell myself it wasn't for me, or Sean, or Sam. The Best Christmas Ever was for Ryan, Will, and Abby. You see, when you have a complex child, everything revolves around that child. If you haven't seen the movie Wonder, I would highly recommend it. The way it depicts each member of the family with a complex child is spot on. The sister of the boy who is medically complex in the movie says, "August is the Sun. Me and Mom and Dad are the planets orbiting the Sun." Although she deeply loves her brother, she feels left out sometimes. I could write a book about the mom guilt feelings I have with my other three kids since Sam has been born.

It really is incredible what can happen when people use their pain to help others. Click here to learn more about the Best Christmas Ever and read the story about this amazing dad who decided to pay it forward year after year to families who have been dealt a tough hand at no fault of their own. We were blessed this Christmas because one person tried. And we weren't the only ones blessed, all that partook were uplifted. We can't thank all involved enough. Sometimes, thank you doesn't do justice. At the end of the day, it's my hope, my kids will see His work in all of this.