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Journal entry by Jamie Grant

Several people have ask me if I've stopped updating Sam's journey. Definitely not! I am still writing, but with a different social media outlet. I started a blog to not only continue Sam's story, but also the family life of a complex child. Sam still has more obstacles to conquer and it is my hope you will continue to follow his journey at www.supermansam.com/blog and keep him in your prayers. 
 
Sam Strong! Faith Over Fear!

Thank You and Lots of Love,

Jamie

P.S. Feel free to share his blog!

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Journal entry by Jamie Grant

Sam's dilation went really well last Friday, but we didn't get a lot of answers. He went from having up to thirty retching episodes in a day to only one on Saturday, the day after his dilation. Since then, he has had maybe one or two episodes a day, which is baseline for Sam.

His GI surgeon isn't sure what's going on. At the last two dilations, Sam esophagus was not strictured, but when he gets dilated, it solves the retching issues. We all agree, Sam's seems to hit a threshold and can't tolerate his secretions anymore, hence the constant retching. Last week, starting on Tuesday up until Friday's dilation, he had almost eighty episodes. It's almost to the day, one month after the previous dilation, when the episodes start to become obnoxious. Poor guy was pretty miserable the week of his dilation. Hopefully we'll get more answers tomorrow. It will be a big day for us and Sam. 

We are hopeful the MRI is only precautionary and they won't find anything we don't already know. We are also hopeful Sam's GI surgeon and GI doctor will be able to find fixable answers to Sam's retching issues. After knowing Sam's ENT surgeon for quite a while now, we are aware he will be looking at his airway, but probably won't schedule his next surgery until all of his GI stuff gets figured out. We feel so blessed to have the care team we have for Sam. They treat him as if they would their own child. 

Tonight, I bitter sweetly write my last CaringBridge post. I can't believe it's been almost two years since Sam was born. It's been the longest and shortest years of my life. We have learned more than I ever thought possible and been through more than I could ever imagine. Although, it hasn't been easy, I wouldn't change it. Everyday, I get to love a little boy who continues to inspire me and so many others. 

Our journey is not over yet and I believe Sam has even more lives to touch. My newfound love of writing has inspired me to continue Sam's story, but through a different avenue. I am nervous and excited to share my blog with all of you and anyone else who wants to know more. 

For continued updates on Sam and the life of a family with a medically complex child, please go to www.supermansam.com 

Thank you for all of your continued support and prayers for our family and I hope you will continue our journey with us.

So Much Love, 

Jamie, Sean, Ryan, Will, Abby, and Superman Sam 

Journal entry by Jamie Grant

Unfortunately, Sam is scheduled for another dilation on Friday. He's had a pretty rough day with a lot of retching, which is usually a tell tale sign of needing another dilation. We are hoping the symptoms are due to needing another dilation and he's not brewing anything. Pray this is the case. Or even better, pray he just gets better. Poor guy. So tough. 

Just keep swimming, just keep swimming, just keep swimimg, swimming, swimming. From the wise words of a little blue fish, named Dory.

Journal entry by Jamie Grant

Last year, a group of us participated in the first annual Ronald McDonald House Family Walk. We had such a great time and after talking with some of you, I realized more would of liked to have joined us. That being said, the 2nd Annual RMH Family Walk will be on August 4th in St. Paul. We would love for you to join our team, Sam Strong, of course, or make a donation on our behalf. 

You can join our team, by clicking on "Ways To Help", under "Support Links" click on "RMH Family Walk". Once at the RMH site, click on "Join A Team to begin fundraising". Click on "Join As A New Participant", scroll down, under "Team Name", type in "Sam Strong" and click on "Search For A Team". Scroll down and "join" our team! Otherwise, once at the site, you can click on "Donate and make a difference". Make sure to type in "Sam Strong" under "Recognition Name". Thank you in advance for joining our team and/or donating! 

Why we walk? I still get emotional when I think of RMH Minneapolis. For seven months, I had a free meal cooked me. For seven months, I had a bed when I asked for one, and during really tough times with Sam, even when I didn't ask. For seven months I had a nice, warm shower when it was often well overdue. For seven months, I had a friendly smile greet me each time I walked in. For seven months, I had a place to get away for a moment without the feeling of being in a hospital, while only being a few steps away from Sam. I could go on, but I think you get the point. This charity has touched me and I know, so many more, on a personal level and that's why we will walk again.

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Journal entry by Jamie Grant

As I write today, my eyes are welling up with tears. Last week, I sat in a sanctuary chair and listened to a daddy, aunties, a brother, and a grandpa, courageously get up onto a stage in front of a crowd of people, not long after their sweet five year daughter, niece, sister, and granddaughter had past away. This family had clearly endured so much in her short five years of life, but the overarching theme was faith, hope, and a whole lot of love for a little girl with an infectious personality. They had a gift of truly knowing, first hand, that each day we get on this earth is an incredible gift. I think most would agree, the loss of a child is absolutely heart-wrenching. There are many questions I will have for the Man up Stairs one day, but until then, I have to and will trust in His perplexing plan. When I have a hard day, I remind myself, it could be so much worse. 

Sam recovered really well at his last dilation! He was all smiles before we left the hospital. He did get dilated, but his GI surgeon is very hopeful, Sam won't need another one and we are too. He has been doing awesome and continues to impress and warm our hearts daily. 

On June 4th, Sam will have an upper endoscopy, bronchoscopy, and an MRI on his brain. His GI doctor thought it would be a good idea to take a look with his GI surgeon to keep everyone on the same page. Sam's ENT surgeon/doctor wants to look at his airway to navigate the next steps for Sam's cleft surgery. And his pediatrician has wanted an MRI done on Sam for a while now, but didn't want to put him under sedation unless he was already going under. Talk about teamwork! It will be a big day for us and Sam, but nothing he can't handle. Sometimes, I think it's just as hard on us than it is on him. Again, perspective, it could be so much worse. 

I don't know about you, but we are thoroughly enjoying this weather. You can feel a little couped up when you can't go anywhere, but outside and/or to a hospital. As much as we love our friends at the hospital, we like to stay away from there. Apparently, winter didn't want to end this year. The weather opens up a whole new world for Sam and he loves it! 

Hang in there with whatever hardship you are going through. Keep your head up and remember, everyday might not be good, but you can find something good in everyday. 

Lots of Love,

Jamie, Sean, Ryan, Will, Abby, and Sam

Journal entry by Jamie Grant

On Wednesday, Sam will go in to have another upper endoscopy with a "possible" esophageal dilation. I quote possible because based off Sam's symptoms, we are pretty sure Sam will need to be dilated again. Poor baby. Pray all will go smoothly and recovery will not be like the last one. 

Tomorrow, Sam will see an immunologist as recommended by his pediatrician. We are hopeful there is nothing more Sam has to deal with and we will not be surprised by anything. High hopes. Low expectations. 

We saw Sam's pulmonologist (respiratory doctor) last week. She is the doctor who makes the call on whether or not Sam can go places besides walks outside and the hospital. Walks outside, what's that like?! ; ) I was kind of expecting her to loosen the reigns a little, but she didn't. Wah. Wah. Needless to say, I was a bit bummed. I clearly wasn't practicing my high hopes, low expectations motto. I made myself change my attitude by putting my thoughts on the many things I have to thankful for. It didn't take long for my heart to be filled with gratitude. Her reasoning makes total sense. She doesn't want anything else to get in the way of his next big surgery. We really can't argue with that. 

We might have left out the part where we brought Sam to Grandpa and Grandma's for Easter. Our hearts were awful full that day. We didn't want the day to end. Even Will mentioned, with appreciation, he felt like a "normal" family. Sam was a little shy, of course, but warmed up towards the end. I think Sam's aunties were pretty happy he let them snuggle up with him. It's all about the little things. 

My cousin is out of the hospital and doing better each day. Pray continued healing for her. 

Staying Sam Strong!

Jamie, Sean, Ryan, Will, Abby, and Sam

Journal entry by Jamie Grant

My cousin did wake up on Sunday and seemed to be slowly recovering. They had even moved her to the post partum floor. If they would not have been at the hospital they were at, my cousin would not be here today. Another miraculous story where it's awful hard to deny a Greater Power stepped in to help. Unfortunately, yesterday they moved her back to the ICU. She had a blood clot in her lung. She is doing better. Their world has completely stopped, while the rest of the world keeps on going. Continue to keep my cousin and her family in your prayers.

Don't feel bad if you want to skip all Sam's medicalness and only read about his awesomeness, or even better, just look at the cute pictures. In a nutshell, Sam is a complicated guy.

According to Sam's GI surgeon, the area and reason for the last three dilations, usually only needs to be done once. Once again, Sam's GI surgeon commented on Sam's knack for not doing things the routine way and going by his own rules. Yeah, Superman has that same characteristic, just sayin'. 

The night before Sam's dilation, we were close to making an ER visit. His GI doctor said to take him in if he doesn't stop the retching he head started every three to five minutes. Although, it was a hard night, we were glad we avoided the ER.

The next morning was rough with a lot of retching. We were headed to the right place. Poor buddy. At that point, our hope was Sam would need another dilation. His GI surgeon was worried if he went in and Sam didn't need to be dilated, we would have a whole other slew of problems. Thankfully, Sam did need to be! 

Poor guy wasn't as quick to recover this time. He was pretty miserable. Because Will and Abby were home sick earlier in the week, with different symptoms, we were a little nervous Sam was maybe brewing something, on top of trying to recover from his dilation. Thankfully, it turned out to only be a rough recovery. In hindsight, it made sense, being they stretched wider than the last dilation. 

Our next step is to watch for symtoms. If Sam starts having more frequent retching, we will call, and they will put him on the surgery schedule for another dilation as soon as possible. Hopefully, we will not need to make the call and we can begin to talk about resceduling his cleft surgery.

Besides the medical junk, Sam is doing really well. His therapies have been beyond amazed with his progress lately. One of them reminded us of where he was at a little over a year ago. When we first brought Sam home, at seven months old, he was like bringing home a newborn, not even able to hold his head up on his own. Even with all of the procedures and surgeries he's had since he's been home, he has many characteristics of, although slow, a normal developing toddler. He can now easily pull himself to stand and tends to be a stinker at times, testing his limits. He's realized we all react real fast when he pulls on his feeding tube. Not funny little boy! 

Now for the best part, the pictures. For a little boy who isn't able to talk, he sure knows how to express himself well. 

I hope you enjoyed your Easter. No matter what hand you have been dealt, I hope you can find strength, hope, and courage by leaning on the One who gave his life for you. 

Lots of Love,

Jamie, Sean, Ryan, Will, Abby, and Sam

Journal entry by Jamie Grant

My cousin just had a baby girl. The baby is okay, but my cousin is in critical condition. I don't know a lot of details, but I do know she could use any extra prayers. We are a family who believes in the power of prayer! Please pray for her healing and God's peace that passes all understanding for her husband and the rest of their family. They also have a little boy. 

Lots of Love,

Jamie

Journal entry by Jamie Grant

Sam will be going in for another possible dilation tomorrow. Based on his symptoms of more retching, they are doing another endoscopy to see if Sam's esophageal sphincter is stricturing again. Pray for him as he's goes under anesthesia, yet again. 

I will update on his awesomeness and medicalness when I have more time. I just wanted to make sure we got lots of prayers for tomorrow. Yeah, yeah, I know medicalness isn't a word, but it should be. : )

Thank you for your prayers,

Jamie, Sean, Ryan, Will, Abby, and Sam

Journal entry by Jamie Grant

Yesterday, we had a nice surprise. Sam was scheduled to have surgery on July 6th, but because they had an extra team of surgeons on, they were able to get him in yesterday morning. It's a very scary thing to send your brand new baby away not knowing the outcome and just having to wait...

Surgery 1 went well! Sam was given a feeding tube in his stomach in order to keep his esophagus empty over the next few months and have his stomach grow. They need to do this because his stomach is not attached to his esophagus (Tracheosophageal Fistula). Over the next few months, there will be surgeries in between. For the (hopefully) final surgery, they will try to stretch the esophagus to attach it to his stomach.

Thank you again for your continued prayers!

Love,

The Grant Family
Sam’s Story

FOR CONTINUED UPDATES ON SAM, FOLLOW HIM AT http://www.supermansam.com/blog

Our precious, little Sam James Grant has been a surprise to us in many more ways then one. Surprise...we're having another baby!?!! Surprise...he/she is 3 weeks early!! Surprise...it's a boy!!!! Surprise he's choking!?!? Surprise...he's not breathing!?!? Surprise...your son has down syndrome?? Surprise...we are immediately rushing him to the Children's Hospital NICU??? Surprise...your son has Tracheosophageal Fistula???

Never, did we imagine any of this. No one does. It's a lot to take in.

We are so blessed with the amazing support system we have. Thank you so much for your continued prayers. We will do our best to keep you updated with our surprise blessing.

Love,

The Grant Family


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