Amazed by You

Damon is getting more confident every hour it seems with walking. He is choosing to walk now more than crawl. Although last night he was walking in the living room and he was heading toward the step and wasn't slowing down so I grabbed him up. I'm not sure if he thought he could just step right off of it or what, but I wasn't going to wait and see. He is so observant. He will pick up an object that he's seen me use and mimic the actions that I do when using it. Yesterday, all on his own, he carried an empty fruit snacks wrapper from the living room to the trash in the kitchen and threw it away. He's so smart; he just amazes me everyday.

Speaking of amazing, we had an amazing church service this morning. Our church (along with others in our denomination) sponsors a bible college out of Baxter Springs, KS and last year some people started an online program that people all over the world are using to take classes and earn degrees from our bible college. Today in our service we had the chairman and his wife come and tell us about it and they brought with them a pastor from Liberia, Africa who is one of the online teachers. He shared his testimony and he preached for quite a while. One of the first things he said was that when he walked through the doors of our church, his heart was burdened with some things and he shared those things with us. More than one of the things he said was was for me to hear. At the end of the service he pointed out some people to come forward so he could pray over them and two of the people having been dealing with some issues for a long time that have been burdensome for them. I don't know what the man said to them, but the presence of God was so thick you could feel it. He also went around the whole room and prayed for different people as God led him and there was one man that was either getting saved or rededicating his life to God, I'm not sure. What I am sure of is that God was working in that service. People were changed today. I continue to be amazed by all that God has done in my life and the lives of some of my family and friends. He is truly an amazing God. Talk to you all later.

Sarah
P.S. Tomorrow one of the HLHS boys that I keep track of is having his pre-Fontan heart catheterization. Pray that all looks good with his little heart and there are no surprises. His name is Elijah.

If that's what it takes....

As embarassing as this is for me, it's too cute not to share. Apparently this is what will keep Damon occupied long enough for Mommy to take a shower. I think I picked these up about 4 times that day, and let me tell you by the 4th time it wasn't nearly as cute.

We got home from picking up Myles from school and pretty much as soon as we walked in the door both boys have been very difficult. Lunch was no fun and I am very quickly loosing patience. So say a prayer for me because it seems like once they start acting like this they don't stop all day.

Here is a couple of expirements you can try so you can see what I go through.

1-Tell someone to follow you around everywhere you go for about 10 minutes and say your name over and over the whole time without stopping.

2- Go to someone and start pointing at something you want, but don't say what it is, just say "uh". When they ask you what it is you want, only point and say "uh". See how long it takes them to get frustrated with you.

3- The next time someone asks you to do something, whine about how you can't do it. When they persist to get you to do it start crying. If they still persist start screaming at the top of your lungs that you can't do it.

These activities might give you an insight into my day. If you have small children, there's no need to participate, you already know.

Okay, really I'm just blowing off some steam. I love these two boys very much and I love spending so much time with them. I wouldn't trade either one of them for anything, but they can be sooooooooo frustrating. And I would rather have them here with me, driving me crazy than lying in a hospital bed, or worse. There are so many parents out there that would give anything to hear their child cry because he can't have any more chocolate, or to be following them around saying "mama, mama, mama, mama, mama, mama". I know how blessed I am, but I'm also human. Talk to you later.

Sarah

Video

Here is the video of Damon walking. I hope you can all view this, as it's my first try doing something like this. Please comment and let us know if you can see it or not.

Sarah

Back home

As Jeremy said last night, we took Damon to the ER and found out he has an ear infection and bronchialitis (sp) which is the child version of bronchitis. SLCH and Dr Tong were both contacted and none of the drs were concerned that his heart was in danger so they went ahead and sent us back home around 2am. It was a very long night. He has a script for antibiotics, and a nebulizer for breathing treatments and another steriod to help him get over the bronchialitis.

He woke up this morning with another fever, but we gave him some tylenol and it's pretty much gone now. He also threw up about an hour ago this morning so I'm not sure if that is due to drainage or something else. We are very glad to be home this morning and not in some other city. The enemy is trying to attack our little guy and we are just not going to have it! Please continue to lift him up to our Father in prayer. Talk to you all later.

Sarah

ER

Just wanted to let everyone know that after the calls to Dr. Tong's office we still ended up at the emergency room. Damon had a high grade fever and his sats were dipping low, so we decided to take him to the ER in Joplin. Him and Sarah are still there and the last thing that I have heard is that Damon has some sort of lung infection. I am not sure how severe or acute it is, but once I find out I will be sure to post it on here. I have a feeling that we will be in St Louis sooner rather than later, but hopefully I am wrong.

Update

Dr Tong called back and he isn't concerned about these issues at this time. He said that over since his 2nd surgery his sats will start to lower. He said if he is active, upset, crying, etc. when his sats are taken then they will be lower and not accurate. On the other issue about his breathing, he said that now that he is more active his heart is working harder and getting tired out more easily, which is a common thing with people who have a single ventrical heart. That's why they most generally can't participate in sports that require long endurance.

He said that since he's coming down with a cold or whatever, he wants me to wait until he gets over it and see if he's still doing this thing with his breathing. We have a scheduled appt with him on April 6th, so that should be enough time for him to get over whatever he has. Please pray for him. I automatically start thinking that his aorta has gotten too narrow again whenever something comes up and it's especially nerve wracking now since the dr that did his last heart cath told us that they wouldn't be able to do any more good with a balloon procedure. I think he's fine but still want everyone to pray for him.

Sarah

Call to Dr

I called Dr Tong this morning because I am concerned about a few things. Nothing too serious, but whenever I notice something different I always ask him just to be on the safe side.

I've noticed recently that whenever Damon crawls or walks (still holding onto the wall or whatever) from one end of the room to another, or down the hall or from the kitchen to the living room (basically anytime he exerts himself) that once he gets where he is going he is kind of breathing heavy and faster, like he's out of breath. Kind of like I sound after I climb a long flight of stairs. Haha! He doesn't seem to be struggling to breath and his face and hands/feet look fine as far as I can see but I haven't noticed him doing this before.

The other thing is that last week when he got his RSV shot the nurse took his sats and they were in the mid 70's-low 80's. That's a bit lower than they have been lately. The last several times they've been taken they were in the mid to high 80's so I just want to see what the limits are for those.

I didn't mention this to Dr Tong but he also has a fever right now. I put him down for a nap at about 9:30 and at that time it was 101.7 so pray for him for all these things. I'll try to update after I talk to Dr Tong. Talk to you later.

Sarah

Happy St Patrick's Day

I hope everyone remembered to wear green. We all forgot, but thankfully no one has pinched us. Jeremy is feeling really bad so please say a prayer of healing for him. The boys are showing some signs of a cold (coughing, sneezing, little bit of runny nose) so pray for their protection as well.

We had a family dinner at our house yesterday for all the March birthday's and it was fun. I was really tired afterward and even left the dirty dishes to do until today. But it was worth it. I took the boys to another MOPS meeting today and they had a kids party and got to hunt eggs. They both had a fun time. I have a video of Damon walking that I'm going to try to post on here. We'll see what happens. Talk to you all later.

Sarah

Yea!!!

Jeremy will be home tomorrow and we're all missing him a lot so it will be good to have him back. He called earlier today and said he and his travel partner were going to check out the Kennedy Space Station. Cool!

My mom came over today and helped me hang all my pictures in the office that we just redid. They look so good in there. I'm so glad she helped me cause I'm terrible at getting that stuff done right the first time. While she was here she was trying to get Damon to walk and she handed him two sharpie markers to try to trick him into thinking he was holding onto her fingers and it totally worked. He took about 4 steps. After that he kept taking several steps at once. I knew he could do it all along, he just wouldn't. So it won't be long now at all before he's walking all over. I can't believe my little precious, fragile baby is starting to walk. Tear.

Talk to you all later.
Sarah

Heavy heart

There is just so much in this world that I don't understand. My own life has brought many things, but even with all I've been through in my short 27 years on earth, I feel like my burden is light compared to that of others (at least for right now).

Gage: a little boy around Myles' age who has had cancer once already and now possibly has it again. It's a tumor in his brain. His last MRI showed that maybe there is no tumor where they thought so they are having a more detailed one tomorrow. Believe with me that God has taken this tumor out and Gage will not suffer any more from cancer.

Larry: He is a pastor here in Joplin. About 6 weeks ago his heart started to give him trouble and since then it's started to give out on him. His heart function is about 10% of what it should be and I was told tonight that one day this week for 11 hours straight he had to fight to breath, even on oxygen, and if he stopped to take a break from it he felt like he was drowning. He said he was totally exhausted after that. The doctors cannot find what is causing this heart failure and they told him the only hope for his is a heart transplant. The condition he's in right now doesn't really give him the time to wait for a new heart. It is so bleak but God is in control and Larry is very positive. He's believing God for a miracle, but says if God is ready to take him home he accepts it. Larry has a wife and 4 children under the age of 25.

Molly: A little baby girl still in her mommy's tummy. She has been diagnosed with two heart defects. It's a very rare diagnosis and the drs have told her parents that most babies w/ this diagnosis die in utero, never even making it to birth. If she does live to be born she will need surgery right away to put in a pacemaker and also the Norwood, which is the 1st surgery Damon had. Her mom is taking medication that will pass through the umbilical chord to hopefully stop Molly's heart from failing. They are believing God to keep her alive and safe until delivery, but also are facing reality that it might not go that way.

Family from Pryor: They were all four killed in a car accident this week. Dad, Mom, and two brothers. Tonight I found out that the only remaining son is coming home from Iraq to bury his entire family. God help him. Comfort him. Hold him.

Damon, Hayden, Cade, Braeden, Dalton, Elijah: Six little warriors who are doing well, but are still fighting. Every day is a journey down this special road they've been chosen to travel. It's easy to forget where they've been when we see and hear about them being so normal, but we must never forget.

I know you don't know who most of these people are. I know what it's like to say you'll pray for someone that you don't know, don't care about. But what if this was someone in your family. Wouldn't you want people to say they would pray for you and really do it? I just really have a burden for these people. My heart grieves for them tonight. But GOD IS STILL ON THE THRONE, HE IS IN CONTROL.

Rocket ship

Last night, or I guess it would have been early this morning around 2am, Jeremy was able to go out on the balcany of his hotel and watch NASA launch a rocket into space. I haven't checked on youtube.com but he thinks there will be a video of them launching it. He said the whole sky turned orange when it went up. He saw it for about 5 seconds, then it went behind the clouds. That is so cool that he got to see it. I told Myles about it and he called Jeremy and says "Dad, what's up with the rocket ship? I've been looking for it, but I don't see it anywhere."

It was the most beautiful day here today. The temp was about 70. I did some raking and swept of my walkway. Tonight we went to my mom's for dinner and ate outside. After dinner, Myles, Damon, Hank my brother, our mom and I all played hide and seek. It was really funny to see Myles' face when he found one of us. Damon had a great time crawling around the patio. He was filthy afterward, but if you can't get dirty once in a while what good is being a little boy. I have a really cute picture of him that I'm going to try to get on here soon, if I can figure out how to do it. Talk to you all later.

Sarah

Jealousy

Jeremy is on his way to Melborne, FL right now to stay at a beautiful Double Tree Motel that's about 100 yards away from the beach. He won't be able to enjoy the beach very much while he's there but to wake up and be able to see it would be nice. He left this morning and will be back on Friday. Please pray for his safe travel this week.

One year ago yesterday was when we had to life flight Damon to STL the first time. It seems weird to think that we almost lost him, but after thinking back on all that happened that day, we really almost did. Thank God the home health nurse came that morning and alerted me that he wasn't breathing right. For the full story of what happened last year go to the archives and click on March. I'm so thankful to God that He pulled Damon through that ordeal, and all the others that came after it. If God hasn't proven Himself faithful in your life, then believe me when I say that He is faithful and has proven it to me many a time. Everyone have a nice Sunday afternoon/evening and a good week. Talk to you all later.

Sarah

Ooops!

I forgot earlier to wish my mom Happy Birthday! We all love you Munkin and hope you have a great day!

Heater

Our heater went out last night right before bedtime. When we got up this morning it was 60 degrees inside our house. That's fine for outside but inside is another story. Thankfully we have a space heater that I carried around from room to room while we were getting ready. I've called a company to come out and look at it and the lady I spoke with on the phone said she thought it could be fixed pretty easily so pray that she's right and that it will be minimal cost.

There is a lady that I would like you all to pray for. Her name is Trisha and she has cancer. I believe this is the second time she has had it. That is such a difficult battle to fight and she is fighting hard from what I hear about her. But right now she needs encouragement. Please pray for her to be uplifted and for the Lord to fill her with His everlasting joy. Talk to you all later.

Sarah

Anyone with advice...

for me about how I can teach Myles that it's not ok to hit/kick/push/throw things when he gets mad please contact me. He has a vicious temper sometimes and I don't know what else I can say or do to get through to him. I don't want to spank him for hitting me because that seems to send the wrong message but sometimes there is nothing else to do. I've talked to him, Jeremy's talked to him until we are hoarse but he is still doing it. So if you have any suggestions for us we welcome them. Please pray for him too, that this attack by the enemy on his little spirit will be defeated in Jesus' name. Also pray that this cold sore he has will heal up quickly and that God will protect Damon from getting one. Once you have gotten the cold sore/fever blister virus it is in your system for the rest of your life and it can flare up at any time.

I definetly don't want Damon to think it's ok for him to act like that because he sees Myles doing it. Jeremy and I really need some wisdom about this. Myles is so sweet and loving one minute and the next he's a totally different kid. It's so frustrating. Talk to you later.

Sarah

Too blessed to be depressed

I'm sure you have all heard that saying right? I'm not depressed or anything but I am feeling very blessed today. I went to a MOPS meeting today (Mothers of Preschoolers) and I met some new people and had a fun time. One mom there has visited this website and we were talking about Damon. It almost makes my heart burst with joy when I am able to say the words "he is doing just fine right now." Another thing I was thinking about that I'm really thankful for is how well Damon takes his medicine everyday. He likes it even. He loves music and dancing and I love to listen to him laugh at Myles, it's the sweetest sound.

I ask that you would all remember Myles in your prayers. He has two canker sores on his tongue and a cold sore on the corner of his mouth. They've been giving him trouble when he eats and brushes his teeth. Talk to you all later.

Sarah
Thanks to those who left comments, we love it!

Back Online

If anyone has tried to check the website for the last couple of days you have have noticed it wasn't working right. It was down for a little while, but now it is up and working great again. Many thanks to our friend and website godfather Big Dre. You are the best Dre. Look for more posts soon.

Jeremy & Family

Growing pains

I think Myles was having them last night. I didn't realize that there was such a thing, other than the show, but apparently it's true. He had a fever last night and I think tonight too, so please say a prayer for him.

Jeremy will be getting home in a couple of hours (2:30 am or so). He's had a long day so hopefully he can take a nap tomorrow. Not much else to report right now. Talk to you all later.

Sarah