Dr appt

We went to see Dr Tong yesterday. Damon's sats were in the 90's which was just fine with everyone. He said his echo and ekg looked fine and he weighed 14lbs 8oz and is 26in long. He wants to see him again in a month and we have to get another xray before that appt to see if he can get off the lasics. He will have to go up to STL in either August or September to have a follow up perfusion scan but Dr Tong said we don' have to worry about scheduling that just yet.

Now for the big news....he has a tooth! It was barely poking thru last night and this morning it is thru all the way across and it is very sharp. He won't let us get a look at it though, that tongue won't stay back. Also he is sitting up now, but still falls over every few minutes. Last night we were letting him drink water from a cup and he loved it. It was pretty funny. Talk to you later.

Sarah

Dedicated

Yesterday was Myles' 4th b-day. We had his party at the church. He had so much fun playing with his friends. There are about 4 or 5 little boys at our church who were born all within a year of each other and it's so fun to watch them growing up together. I'm so proud of Myles and how grown up he is.

Today we had Damon's dedication at church. Our parents and siblings and my aunt Terry and my G-ma and Pa were there and it meant so much to us that they were. Our preacher announced that we were going to be doing the dedication and he gets emotional sometimes and he said we do lots of these dedications here but I've been waiting on this day for a long time and his voice broke and then Jeremy and I were both crying before we even got up on the stage. We went up there and he spoke a few words, then we played the song "My Wish" by Rascal Flatts, then he annointed Damon and prayed for him. We're glad to be able to say that his life belongs to the Lord.

Speaking of dedication, last night I was doing dishes and right above our sink there is a window and the screen on the outside doesn't fit quite right so bugs can get in there. Well it was dark out and I had the light on inside so bugs were coming from all 4 states to that light and this one that got in there was HUGE! It looked like one of those hissing cockroaches only with long hairy feelers and it could fly. I was freaking out at first, but then I realized that as long as I didn't open the window, it wouldn't get in. So I started watching it because it was trying as hard as it could to get to the top of the window. Since the glass is slick it wasn't getting anywhere, but that didn't stop it. It never gave up, never slowed down. Once in a while it would fall to the bottom and it wouldn't even rest for a second. It would turn itself over, climb the screen and then when it hit the glass part it was right back to scrambling to get to the top. I thought to myself "that thing is going to die trying to get out." Then I thought "Lord, let me be like that bug. Let me be so dedicated to what it is You have called me to do that I would die trying to do it. You deserve everything I've got. " Weird analogy, I know, but those were my thoughts. Talk to you later.

Sarah

150!!

This is the 150th post on our little website. It has been such a long time since that first one...

Damon is getting dedicated this Sunday morning. It's a short sort of ceremony our church does for babies where the baby's life is dedicated to God and the parents promise to be Godly examples and raise the child according to the bible. Our families are planning on being there and we are very excited about it. It's not usually a big deal, but I am just so happy that we get to do this for Damon. He is doing so well and we credit it all to our Father in Heaven. It is our pleasure to dedicate his life to God and we will always tell him all that God has done in his life.

Also, Myles is turning 4 on Saturday! I can't believe that my baby is 4 years old. He is so grown up! Last week we were at our church camp for most of the week and since then he has been walking around singing all these songs about Jesus. I makes me so happy that he loves to sing, and even more happy that the songs in his heart are about the Savior. I hope everyone is having a great week. Talk to you later.

Sarah

Dr appt

Damon had an appt w/ Dr Wheeler, the pediatrician this morning. He had his first round of shots too. His sats were fine, but as always they took the first number they saw and went with that. These kind of machines need at least 10 pulse beats to get an accurate reading and I never heard more than two. But I know his sats are fine just by the way he looks. Dr Wheeler told me that he was going to put in his chart that he looks a little syanotic (sp?) which means that he looks a little blue and I wanted to laugh because we have come so far in that department. I know I see him every day so I can't tell that he's blue but I guess he still is a little bit.

He weighs 14 lbs 6 oz and is 25 3/4 in long. I'm so proud of him and how much he is growing. He is so close to sitting up on his own. He can do it for a few seconds before he slowly falls over to the side. He also has rolled over a few times from his stomach to his back. The dr was surprised to hear these things because he thought he would be developmentally behind because of his heart defect. In all truth, a lot of these babies are, but Damon is blessed not to be one of them. As he was leaving the dr turns and says "You should be really proud of him, he's a champ. I really didn't think he would be doing this well." My heart wanted to shout "Praise God! He is the great physician and He will surpass everyone's expectations everytime!" But I just smiled and said yes. I don't know why I held back, I'm just shy like that I guess. But I'm braver on this website and you can imagine me shouting that out as if I had really done it.

So far Damon hasn't had any reactions to his shots. He was in a fine mood today, as if nothing had happened at all. We will see how tomorrow goes, but I don't anticipate anything. Talk to you all later.

Sarah
P.S. Congrats to Jeremy on his new job! He will begin working at Jack Henry on July 9th. And thanks so much to the people at Jenny Penny's (as Myles calls it). They have been so great while he worked there.

Happy Father's Day

I want to say Happy Father's Day now in case I don't get a chance this weekend. So to all you dad's, have a great weekend celebrating your selves and relaxing. Thanks to Jeremy for being a great dad and provider for our family. The last year has been so hard for so many reasons, but you have been dedicated and perseverant and we love you very much.

Congrats to Granny and Pa on selling their house and moving yesterday. Hopefully Granny will be able to remember to go to the new house! Haha! Talk to you all later.

Sarah

Rain, rain, go away!

It has been raining here practically non-stop for the past two days. A lot of the roads in our neighborhood are low-lying and they have been closed a couple of times due to rushing water over them. I guess it is saving us money on our water bill because we won't have to water our plants for the next week or two. Myles keeps asking me why it's raining. I don't really know what to tell him, other than so that the grass and trees will grow tall. The sun is out right now and I'm sure there is a beautiful rainbow somewhere close, God's promise to us that he will never again flood the whole earth.

I have to tell you some funny things that Myles said last week. Last Monday my grandma watched the boys while we were taking some stuff to the dump and she drove my car back to her house. She wasn't really sure how to get Damon out of his car seat and she was trying to figure it out for about 10 minutes. She was trying to get him out and finally Myles pushed the right button and the straps came off. She said "Thank you Jesus!" and Myles said "Jesus didn't do it, I did."

Then Thursday night we were getting ready for our garage sale and Myles walked up to this candle thing my mom was selling and said "Munkin, why are you selling this?" then he knocked it off the table and broke it. We all said "Myles!!!" and he looked up and said "Love your neighbor as yourself" like he wouldn't get in trouble if he said that. We started laughing and he got embarressed and told us to stop laughing. Jeremy told him it was good that he said that because that's what Jesus said and Myles says "Don't laugh at Jesus, he died on the cross." He really cracks us up.

Damon is doing really great. He likes to yell and screech really loud all the time and he is so smiley all the time. We will be going back to Dr Tong on June 26th and he is scheduled to get his first round of shots on june 18th, so pray that he won't have any bad reactions to those. I found out today that one of the little guys that we've been praying for in STL got to go home yesterday. We stayed at RMH with his dad. The little boy's name is Luke. He is 3 and he has brain cancer. He still has a long road ahead of him but he is home for now and we are grateful for that. Pray that he will have the easiest time possible while he's at home. I know that kids feel so much better at home. Talk to you later.

Sarah

Thankful

I'm thankful for the feeding schedule that made us get up at 1 and 4am no matter if he got up or not.

I'm thankful for the NG tube and how difficult it was to deal with while I was by myself.

I'm thankful for the Sat monitor that was put on his foot, first three times a week, then twice, then once that went beep, beep, beep.

I'm thankful for being attached to a breast pump for what added up to about 3 hours everyday.

I'm thankful that my hands were so dry from being washed all the time that my skin would crack open and bleed.

I'm thankful for crying so much that it feels like you can't make another tear, then finding that indeed,

you can.

I am thankful for just laying down to go to sleep and hearing him cry because he's hungry.
I'm thankful for dirty diapers, even the ones that make your eyes water.
I'm thankful for the sinkful of bottles that I get to wash every morning.
I'm thankful for the purple laundry bag next to the dresser that never seems to be empty.
I'm thankful that my living room has not only regular furniture, but also a big swing and a bouncy seat to step around.
I'm thankful for having to pick up the toy that's been dropped for the fifth time.
I'm thankful for having to find a sink immediately to wash off the bonky because it fell on the dirty floor.
I'm thankful that my house is never quite as clean as I want it to be because my time was spent doing something with him.

I'm thankful for two hour long airplane rides where the turbulance is so bad my head smacks the ceiling of the plane.
I'm thankful for the $12,000 bill for one of those airplane rides that they told us we had to pay.
I'm thankful for a 30 minute echo at 1am where I'm falling asleep holding his hand.
I'm thankful for cold showers in the hospital bathrooms.
I'm thankful for Jeremy packing my suitcase for me and forgetting my underwear.
I'm thankful for getting to sleep with my mom on a coushin smaller than a twin size bed.
I'm thankful for getting puked on after an xray while wearing the one and only shirt I had with me.
I'm thankful for being woken up at 5am for a set of vitals and a weight.
I'm thankful for thin hospital blankets that might as well be sheets that no matter how many you pile on, you still freeze at night.
I'm thankful that all the drs and nurses in STL have seen me at 7am, looking worse than most of you will ever see me look.
I'm thankful for my cold lunch on the tray that has sat there for an hour because the sat monitor is going off.
I'm thankful for 5 hour car rides home when everyone is tired and cranky and my arm is asleep from being slung over the seat holding the bonky in his mouth so he wont cry and this annoying toy suddenly becomes funny because we are so delirious.

I'm thankful that diapers are so expensive.
I'm thankful that I"ve been to the drs office more in six months than I had been in my previous 26 years.
I'm thankful that half our family didn't see him until he was six months old.
I'm thankful for having to wait 3 hours for a compounded prescription.
I am thankful that our first visit to church he cried the whole service.
I'm thankful that I was forced to quit my job.
I'm thankful that the only time I have to write this is at 11:45 at night.

I'm thankful for wondering so many times "is this ever going to get easier?" and now seeing that it has.
I'm thankful for other people's stories of their HLHS babies who have gone to be with Jesus.

You may think I'm crazy to be thankful for these things, but they all mean that my Damon is ALIVE. Will I ever complain about having to do dishes, or laundry, or getting up early because somebody was ready to play? Yes I will. But in the back of my mind, I will forever be thankful. Thank you God for these seemingly bad things, they are and will remain a blessing. Talk to you later.

Sarah

Saturday

We have spent the day on a water garden tour and it was really fun. Not so fun getting Damon in and out of his carseat what seemed like 50 times though. He has been eating better this past week. He is eating carrots, sweet potatoes, squash, and green beans. We'll be trying peas today and then moving on to fruit. He also likes cereal and is eating about 5 oz in his bottles. He's getting so big! We are maybe going to go to Boomtown Days tonight or tomorrow, it's a festival in Joplin w/ kiddie rides, concerts, just something to do. We went last night and saw Mark Shultz in concert but we had to leave early b/c it was about to pour on our heads. But once you pay to get in once you can come back all weekend. So we are just playing today while daddy and Pa work on the house. We are re-doing our office and our house is a MESS right now so me and the boys are staying away while they are banging around. I forgot to mention last time I posted that Jeremy's brother and his wife (Jason and Michelle) are having a baby and they found out it's a boy. So one more little boy running around getting dirty. Congrats to them! Talk to you later. Sarah