COOPER'S CAUSE PROVIDES ASSISTANCE.....

Saturday was a big day for us. We awarded the first families funds from Cooper's Cause Foundation. It was such a good feeling and I can't wait to help others. Both families were so deserving and I am so happy with the boards choice. We have been so fortunate to get this far!

We go tomorrow to CMH to visit Coop's cardiologist and get an idea of when they will plan his next surgery. I am very happy to be going because there has been a few things going on that we are not real comfortable with. Monday morning was one of those things. I got Coop out of bed and got him dressed. He had been up for a little while and we were in the bathroom brushing his teeth and doing his hair. He had not been very active or talkative but I had just figured he wasn't really awake yet. Anyway, he started turning purple, real purple, around his mouth and the works. He then started shaking and he was very tense. I quickly started talking to him and the thought that he might be having a seizure crossed my mind but I am somewhat familiar with seizures and I knew he wasn't because he was talking to me and looking at me and so forth. Anyway, a little bit after that he threw up all over. After that his color returned to normal and he became active and talkative and everything just like nothing had happened. Similar things to this have happened a couple other times just not quite so severe. Anyway, it definitely makes us a little cautious and it will be nice to get some answers tomorrow. Besides the scary things Coop does, he also makes us laugh......a lot! Last night I was laying in bed with Raelynn reading her story. Terry was in Coop's room reading him a story. Terry and Coop finished their story and Terry put Coop to bed. Terry walked out of Coop's room and headed down the hall. Something caught my eye and I looked up to see Coop following right behind Terry but Terry had no idea he had gotten out of bed. Raelynn and I were giggling. The next thing we hear is Terry saying, "Cooper! What are you doing out of bed?" It was really funny! Tonight he spilled his milk on his shirt at dinner time. He wanted his shirt off because it was wet so I took it off. He then wanted his pants off because they were wet too. I took them off and so there he was with just a diaper on. He looks down at himself, starts laughing hysterically. Raelynn and I are laughing just because it was funny he was laughing so hard. Then he puts his arms up like he was flexing his muscles and growled. I have no idea what the boy was doing but to see his skinny little body standing in a diaper and flexing his muscles would have made anyone laugh! Raelynn thinks her brother is hilarious too!!!

COOPER IS GROWING UP TOO......

First I am so excited to say that I have made my first Blog Book and got it this week. It is awesome. I used this program to convert all blogs from when I started in October of 2007 through the end of 2008. I did this first to see how it turned out and then was planning to convert 2009 and then would do each year as we go along. I ordered 2 books so Cooper and Raelynn would each have one. I realize right now it is not that big of a deal to them but can you imagine when they are my age to read back over everything that went on and how your mother felt about it. I think it would be awesome. I had told Realynn about it and on Tuesday when I picked her up from school I let her know it had came in and I would show her after work. When we got home it was the first thing she asked. So she and Cooper sat down beside me on the floor and I showed them this book. I made the comment to Raelynn that I knew right now it wasn't that big of a deal but when she got older she would love it. She stops looking at the book, leans over to me, gives me a strong hug and sweet kiss and says, "Mommy, I already love it!" Oh if she only knew how much that meant to me.

So as I had said we moved Coop into a toddler bed and everything was going great, that was until last Sunday or Monday. For 2 nights in a row Coop was out of bed and into our room 6 or 7 times a night. He would walk in to our room, sometimes to Terry's side, sometimes to mine. We would get up, get him a drink, and put him back into his own bed. Of course with him getting up all the time I was sleeping lighter than usual. One time I heard his little patter of foot steps down the hall but they seemed to stop short of our room. I sprung out of bed not knowing why he had stopped before he got to us. As I entered the hall I peaked into Raelynn's room and there Coop was along side her bed. He was brushing her bangs off her forehead so softly and whispering, "Good morning Sissy!" I would have given anything to just stand there and watch Raelynn's reaction when he finally woke her but I knew that was just mean to Raelynn. I went in and got Coop and let him know it was not morning yet and he had to go back to bed. On the third night, Terry was putting Coop to bed and I told Cooper, "you can't get out of bed during the night when Mommy and Daddy are sleeping, if you need something you holler for Mommy and I will come to you." He responded with his standard sweet, "Otay!" Do you know he has not been out of bed since?! He did get up last night but Terry was still up and he just came out to see what he was doing.

Our fun this week has been making dinner. Raelynn usually helps me but this week she and Coop have basically done the cooking....with a little supervision. It might take longer but is sure more fun cooking with little helpers. They managed to make Smothered Chicken and egg, bacon and cheese biscuits and have eaten much better as well, at least Raelynn has :)

Tomorrow we make our first presentation of funds for the foundation to 2 families. I am so excited to meet them and to give them some support. This is all so great I cannot believe it is really happening!!!

THE WAY A WEEKEND SHOULD BE.....

Earlier this week Raelynn brought home a poem that I love. It is what we all need to do from time to time.....

Just for this morning, I am
going to step over the laundry,
and pick you up and take you to the park to play.

Just for this morning, I will
leave the dishes in the sink,
and let you teach me how to put that puzzle
of yours together.

Just for this afternoon, I will
unplug the telephone and
keep the computer off, and sit with you in the
backyard and blow bubbles.

Just for this afternoon, I will
not yell once, not even a
tiny grumble when
you scream and whine for the ice
cream truck, and I will buy you one if
he comes by.

Just for this afternoon, I won't
worry about what you are
going to be when you grow up, or second guess
every decision I have made
where you are concerned.

Just for this afternoon, I will let
you help me bake cookies, and I won't
stand over you trying to fix them.

Just for this afternoon, I will take
us to McDonald's and buy us both a
Happy Meal so you can have both toys.

Just for this evening, I will hold
you in my arms and tell you a story
about how you were born and how
much I love you.

There was no author listed but I love this poem. There is no way we can always walk over the laundry or let dishes sit but there is no doubt that it can happen once in awhile for at least a little while. Today when Raelynn asked if she could watch a movie, I said let's play a game instead. It was great! Later in the afternoon while Coop slept and all I had on my mind was to get a stack of things done, Raelynn asks if we can make a smoothie. I started to stay, "not right now", but instead thought of this poem and we made a smoothie. I remember playing the game and making the smoothie as the best parts of the day and not all the stuff I managed to get done.

Last night was the Cooper's Cause Poke Tournament. We expected a lot more players than showed up but we still raised over $600 which is great! I think everyone had a good time. Raelynn and Coop ran around until about 9pm and then we headed home but the tournament didn't get over until 12:30am. Anyway, it was really pretty fun to see how it all works and we raised money to help another family next year, what else could you want for a Saturday night :)!



Raelynn read Coop his bedtime story tonight. It was so sweet! Coop picked the book but Raelynn knew the whole thing front to back. They are just so sweet together. However, Coop has decided that Sissy's hair is for pulling and Raelynn is not a big fan of that. She told him today that if he keeps pulling her hair she would start pulling his ears! I guess that was the first thing that came to her mind since they just stick out there. Awe.....the love of a brother and sister!


Although Terry loves Raelynn and Cooper so much, he still keeps room in his heart for his first born........

COOPER, WHAT ARE WE GOING TO DO WITH YOU.........

The morning started out so great. Coop decided he would help me wake Raelynn up. He goes into her room and with his tiny fingers he brushes her bangs to the side and whispers, "Good morning Tissy (Sissy)!" A smile instantly beamed on Raelynn's face as she stretched and slowly opened her eyes, "Good morning Buddy!" I can not think of a better way to start the morning.

Then the morning took a turn, we had Coop's third synagis shot this morning. The shot is based on weight so Coop always gets weighed, then examined by Dr. Kelley and then the shots. We strip him down and out to the scales we go and that is when we find out the Cooper has lost 3 oz over the last month. That might not sound like much, but any loss with Coop is a big deal. Dr. Kelley measured his liver and examined him and his heart and we talked. We feel like his weight loss is just due to his increase in activity and therefore there is little we can do. We already fortify his milk to the maximum amount his body will stand for so there is really little we can do. Terry and I knew he was increasing his activity because he was actually starting to take breaks during play. Because of his reduced oxygen supply, when he plays hard or is running around or going up and down stairs he is easily "winded". There have been a couple times that he has just laid down for a minute or two after he has been running around and we notice his hands and lips appear a little dusky. Anyway, the weight loss was very discouraging and if he continues to loose we will have to go back to a slow feeding drip during the night. This means we would go back to a feeding tube and let it run slowly over the night while he sleeps. Can you imagine holding him down every night and inserting a feeding tube up his little nose and down to his stomach while he yells, "No Mommy" or "it hurts Mommy"? No this is not something I want to imagine let alone actually have to do. Dr. Kelley was trying to be encouraging and said we will list his feeding as stable this month and reevaluate his weight next month and go from there. I know this should not be that big of a deal but for some reason it seemed horrible to me. It does not help that Coop cries so hard when he gets his 2 huge synagis shots and repeatedly tells me how his "shots hurt" and how he holds on so tight to my neck afterwards that I actually feel the shots myself and then I have to take him to daycare, tell him he will be fine and leave while all I want to do is continue holding him. Anyway, I know this is minor but I like the appointments where he gains weight much much better!

SISSY LOVES HER BOO.....................

What a week we had last week. Raelynn is in an unbelievably good phase. She has been so grown up and so good, but it wasn't her wonderful behavior and attitude that really made last week touching. Last Sunday we were with some of Terry's family discussing Coop's next cardiac appointment on Feb. 3rd when they will determine when his next surgery will be. Then on Monday or Tuesday while Terry and I were cleaning up the kitchen after dinner we were talking about the families that Cooper's Cause was providing funds to. One of the families' baby did not make it and Raelynn was asking questions about them. We were talking openly about the situation and Raelynn knows that the foundation is to help other families with kids like Coop so she had asked me a few questions about the babies heart defects. The following day, I picked Raelynn up from school and dropped her off at Mary Beth's. She gets to Mary Beth's a little before 2pm and the little kids take their naps at 2pm. Well I guess after I left and they went to put Coop down for his nap, Raelynn began sobbing that she had not got any time to play with her brother. Mary Beth said she was just sobbing. I didn't put this all together until Thursday. I picked Raelynn up from school and headed to Mary Beth's. We are just talking away when Raelynn asks me when Coop's next surgery is. I told her we would find out in a couple weeks on Feb. 3rd. She asks if he would be in the hospital again and I let her know he would. She then asked what they were doing to his heart this time. I told her they were still trying to fix it just like last time. She replies to me, "Is he going to die again?" It was like a light bulb coming on to me. All the talk about his next surgery and of the other family loosing their baby left Raelynn with the fear of losing her little brother. She understands that we almost lost him last time and now I had just told her they were doing the same surgery they had before. I replied to her that I didn't know if Boo would die or not but we were lucky to have so much of him in our hearts that we would never be without him. I told her we had to trust that God has a plan for Cooper and whatever that plan is we have to believe it is the perfect plan. She says, "I would miss him." By this time I can hardly keep the tears back but I manage to say, "I would miss him too." This was the end of our conversation and she went on to say she was hungry and wondered what was for lunch. I couldn't help but realize our resilient little girl is still just 4 years old and I know that I do not want her worrying about anything but the things a 4 year old should, but unfortunately we are beyond that and now we just have to make sure that she doesn't keep her grown up worries to herself and that we can continue to talk about them. I also think that not only talking to her and with her but letting her be as much a part of Cooper's daily activities and she wants to be will help. So I will continue watching her help with his bathes, brush his teeth, get ready for dinner every night, read him stories, play game after game with him, teach him new words and on and on, and the whole while I will remember inside that she is not doing this just because she loves her brother but because she fears losing even a second with him, much as I do.