DQ treat day

It's time again for the annual Children's Miracle Network fundraiser at Dairy Queen. August 7th go to Dairy Queen and buy a Blizzard Treat and a portion of the cost will go to Children's Miracle Network.

CMN has done so much for our family, paying for our gas to get to Springfield dr appts and St Louis. They also paid for us to stay at Ronald McDonald House in STL. They are a great organization! We will be there for sure and hope to see you too!

Sarah

New saying for you to use

On Sunday we were going out the door to go to church and Damon tripped at the end of the walkway and fell on his knees in the gravel and scraped his knee. He didn't act like it hurt him at all until I put a bandaid on it. Then he was parallyzed (sp?) until I took it off. Today he noticed it and started saying "booboo hur" (booboo hurts). So I kissed it for him. Then he leaned way down and kissed it too. :)

Tonight Myles and I were frosting a cake and Jeremy was folding laundry. He and Myles were talking about something and Jeremy made some statement and Myles responds with "Liar, liar pants for hire." We laughed so hard at him!


The hourly rate for his pants is....just kidding. I love my kids!

Sarah

She-she

Jeremy and I are in Branson, having fun together. Today we saw the Amazing Acrobats of China and they really are amazing. Before the show started they taught us how to say hello (ni hao) and thank you (she she). Funny thing is, that's how Damon says thank you! And even funnier, Myles said it the same way when he first learned how to say it. My children are geniuses!

Yesterday I got to talk to a friend and fellow heart mom. I've mentioned Cade on here before, I think, and his mom Bree and I talked for a while yesterday. Cade is
2 1/2 and is doing wonderfully well. She said she loves to go to the cardiologist because they are amazed everytime they see him. We both agreed that we are so thankful and grateful for how well our boys are doing. There are so many HLHS kids who are still struggling.

I've "met" (not actually in person) so many people because of Damon's heart condition and I'm overwhelmed by how caring everyone is. When you share something like this in common, you are instantly friends. It was great to get to talk to her. I hope everyone has a great weekend! Talk to you all later.

Sarah

Sir Talks-a-lot

Damon has been yaking it up lately. He's starting to put words together, like "Mama hep" (mama help). "Mama, sna" (mama snack). Oh no, uh oh, yeah baby, no no Mya (no no Myles). He also can give him self a spaken. I asked him last night if he wanted one cause he kept climbing over the side of the couch and jumping on it. He said "yea" and I said do you know what a spaken is? and he started spaking his arm. Yeah and he's climbing too. He likes to climb Myles' bunk-bed ladder, and this little stool we keep in the kitchen or Myles to stand on. He pushes it up to the edge of the counter and climbs up there and gets into everything he can, which is usually my purse and all it's contents. Today he go into the junk drawer (you know everyone has one) and got out three pieces of gum and was chewing through the first one, had the second one unwrapped and was working on the third before I found him.

We have a handfull! Talk to you all later.

Sarah

In better hands

Sam passed away last night, around midnight. His family are Christians and they know that Sam is in heaven with Jesus and he is totally healed. In their post they were very strong but they have a long hard grieving proccess ahead of them. Please pray for the Sucher family.

When I read that he had passed away, I told Myles because we've been praying for him for the past three days. He was very upset and didn't understand how Sam could've died since we prayed to Jesus for him. I tried to explain that sometimes God just wants people to be in heaven with Him, but I think he is still confused about it. Please also continue to keep Damon in your prayers. I know if my heart that Sam didn't have a lack of people praying for him. God's will was for Sam to come home and put an end to his struggle. But I shutter to imagine what the results would be if no one were praying for Damon. Have a safe and happy holiday weekend. Thank God for the freedom we have in our country, and the freedom we have in Him.

Sam

The following is the post on Sam's website this evening. Sam is the little boy I asked you to pray for today. I know I have a special compassion for families in our similar situation, but if this doesn't rip your heart out, I don't know what would. Please lift this family and this little boy up in your prayers.

Posted July 2nd:
This is the third time that I have tried to type this, or rather post it. Twice it has disappeared. It is just a sign of the type of day we have had. It started with a bad report from the nurse, followed by the cardiologist who mentioned taking Sam off ECMO because of the complications. That would essentially be pulling the plug. The cardiac surgeon continued the bad news by coming by to tell us Sam was not eligible for a transplant while septic and was therefore off the transplant list, at least until the infection clears and he is culture negative. In addition, his sepsis and poor circulation have caused micro clots in all four extremities. They are very mottled, the right hand and left foot are completely purple. If he cannot improve this, he would likely not be put back on the transplant list.
The transplant team came by deliver a formal letter telling us we were off the transplant list. The social worker and child life specialist came by to see if we needed help telling Chandler and Jacob and if we wanted castings of Sam’s feet and hands. Wouldn’t you be crushed? On a week that seemed to hold so much promise, instead we have to decide how much further to go. On a day when hundreds of people are praying for Sam, what we see is all bad news with little likelihood of improvement. This whole unit is a miracle in my opinion and the methods, machines and techniques are medical wonders. The people are fabulous. None of this is enough. We are in need of a true miracle from God if Sam is to survive with good function.
Though we have tried to be hopeful, I confess to being terribly depressed. There seems so little positive to grasp at. I want to trust, to be faithful and hopeful. I want peace and most of all I want healing. Is it really not God’s will to heal my son? Yes, I truly know that God will give him not just a perfect heart but a perfect body. I know that he is a gift of God and only on loan to us, but is it too much to ask for more time here and now. There are so many things I want to do with my son, so much I want him to learn. I want him to grow physically and spiritually. I want many more years of shared memories.
Hundreds of you prayed for Sam today. Please continue to do so. Perhaps he is to be a sign of God’s healing power when even the miracles of modern medicine do not suffice. Certainly His medicine is more powerful, infallible. Lord, please let me see my son healed. I do not know what else to say. I am emotionally drained and physically exhausted. Please continue to pray for us all.
John and Tanja

Pray for Sam

Life has been going on as normal around here for the past few months. While I will never forget what we've been through, or what we are still to face, sometimes it fades away in the hustle and bustle of everyday. Damon is healthy and growing (slowly) and happy and his heart is doing just what it should be doing. But tonight, while I should've been sleeping I found another heart warrior named Sam who isn't doing as well.

Sam is in the ICU on a machine called ECMO, which is keeping him alive until he receives a new heart. From what little I read, I believe that Sam has HLHS like Damon and he is over 2 years old which means he's had at least the first two surgeries, possibly the 3rd. But his little heart is still sick so he had to be put on the transplant list at the beginning of June and right now he is not doing well at all. Tomorrow, July 2nd, believers from around the world are going to agree in prayer for Sam. Please join me in praying for him, around 12 noon. Pray that his vitals will improve, that he can come off ECMO, that his perfect heart will become available. Pray for the family of that lost loved one that will provide that perfect heart. Pray for Sam's family. For strength for them, and encouragement. Pray for God's will to be done and for the Comforter to be with them during this time and whatever lies ahead.

When I read about kids like Sam, I have so many questions. And the devil trys his best to put fear in my mind. (Sometimes he succeeds.) I ask myself why my son is doing so well and theirs isn't. Why did his heart fail after being fixed? Who knows...only the Father I guess. What promise do we have that Damon's will be fine? None. But we still are to trust in Him. He is still trustworthy. A long time ago, I came up with this statement that I use and think of often. "There is no promise in what tomorrow brings, only in who holds tomorrow." Tonight I cling to that truth.