GO COOPER GO................

We had another weight check for Cooper today and he has gained 3/4lb and is back up to 25lbs! We were so excited but after yesterday not surprised. Yesterday Coop ate as much as if not a little more than Raelynn did. It was crazy to see him eat. He sat at the table for over an hour and ate little bite after little bite. He is now telling us what he does and doesn't like, "dat bite to big, I wike wittle bites!". Tonight it was just Coop and I for dinner since Dad and Raelynn had a Watch Dog meeting at school. I asked him what he wanted to eat and he says, "Yogurt and Puppy Cheetos"(this is what he calls the big puffy cheetos). I told him he could have yogurt but not puppy cheetos until he ate something else. He says, "O tay, what you having I eat too." I think he might finally be catching on!!!

We are still working on potty training too. He is doing pretty well but we still have accidents. This weekend at the family reunion Terry had taken Cooper to the bathroom a time or two and usually he doesn't. This morning I took Coop potty and when he was done he says, "next time I potty I stand up like a big boy". Oh boy!!! I told him he couldn't stand up until he learned to never potty in his pants. I have no idea what my excuse will be when he gets that mastered. I just cannot imagine cleaning up that mess!!!

Our family reunion was pretty fun and it was great to see everyone. We went to Manhattan on Friday night and stayed with Steph. Raelynn and Cooper slept in the same room and boy was that a treat. They finally went to sleep but I now know for sure they will never share a room. First it was too much giggling then Coop wanted to continue to be funny while Raelynn was ready to go to sleep. The both finally did go to sleep and even woke up pretty happy Saturday morning. Then it was off to Hays for the reunion. It made for a short weekend but well worth it. I am looking forward to a long weekend coming up though.

WHOO......COME ON WEEKEND....................

Raelynn had her first soccer practice on Tuesday. It was super cute and the coach and his wife are great. Raelynn had a great time and is looking forward to it. We are going to miss her first practice due to a family reunion this weekend but as Raelynn said, "it's ok it's just a game and family is family".


Wednesday we met with Coop's nutritionist and she was encouraged by Coop's progress and gave us some new ideas. He really is doing great and is getting even better. He eats well at Mary Beth's and after talking with Mary Beth and Stacy (Coop's nurtitionist) we have made a few adjustments at home that seem to be helping too. I am just praying that our weight check on Monday will be positive.
Tonight we had curriculum night at Raelynn's school. It was great to get a feel for what she will be learning this year and their methods of presenting the material. I continue to be amazed by how old Raelynn is already. Time really does fly and it is constant a reminder of how much each day with them should be cherished.
We leave tomorrow to spend the night with Aunt Steph and then on to Hays for a family reunion. It will be nice to see everyone but am really ready for a little downtime.......I guess there is always the next weekend, hahaha!

I WANT A PUNCH CARD...............

I have a purse full of punch cards and frequent shopper cards. You know the ones you get from The Buckle or Maurices.....each time you spend $10 they punch the card and after you get all the little $10 punched you get $10 off your next purchase.....or buy so many ice cream cakes and you get a free one......or frequent flyer miles, fly so much and you get a free ticket. The list goes on and on but where I really need a punch card is to our paediatrician's office.....why don't I have one there????!!! 10 Visits and your next one is free! This would be a card worth having! I could have punched one again today.

The kids had their last horse show today. We were just getting ready to get their shirts and helmets on to ride in their class. Cooper was in the horse trailer standing by the door. Apparently he was pressing his head against the screen and the door came open. He did a face plant right out of the trailer into the gravel below. I was right there and grabbed him immediately. As I picked him up his face was covered in blood, enough blood he didn't even open his eyes. We ran to the bathroom and began cleaning him up to see the damage. Because he is still on aspirin it takes the bleeding awhile to stop. About a half our later we had it pretty well cleaned up and he ended up with a pretty good gash on his forehead, a little divet out of the top of his head and a bloody nose filled with rock and gravel and a mouth full of gravel. After discussion with a nurse and EMT we decided to call Dr. Kelley and see if they wanted me to bring him in. We decided I would so off Coop and I went while we left Raelynn to her ride. We got there basically as the doctor's office was closing but as always they were all awesome to us. Dr. Kelley decided to glue the gash on his head and cleaned out his nose. Cooop was fine and he assured me that he had no head trauma which was my only concern. I was not concerned at all about a few stitches or a broken nose.....we are talking about Coop here and that was all minor. I simply can't ever shake the time he had his little seizure like episode or the fact that he did have some damage in the frontal lobe area of the head when on ECMO so anytime he falls or takes a blow to the head, brain damage and head trauma is all I can think about. But he was fine just looked a little beat up. We made it back to the horse show just in time to hear them announce that Raelynn placed 2nd, yeah! Coop was pretty upset when he learned he wouldn't get to ride Charm today but this wonderfully sweet lady who was going to lead Coop offered him a prize even though he did not get to participate and this made it all better!

On Thursday we had visited our Optometrist for both Raelynn and Cooper. She found Cooper's eyes were improving which was very encouraging! We also found out Raelynn was teetering on nearsightedness and would probably join the rest of the family in glasses before too long. I don't know what we could have expected coming from Terry and I. Anyway, after the appointment we had Coop's glasses adjusted and cleaned. Unfortunately after today's spill, we need the adjustment again and new lenses. The gravel did quite a number on his lenses!

Come on Sunday.....let me see what you've got in store for us!

COOP IS STARTING EAT...................

Here is what our big boy had on Day of 2 of trying to eat:
BREAKFAST: Little piece of toast with PB and honey, 1 slice of banana and milk.
SNACK: 2 animal crackers, 4 fish crackers and 15 golden puffs and milk
LUNCH: 7 little bites of grilled cheese, 2 green beans, 5 small bites of mashed potatoes w/ cheese, 2 small dishes of yogurt
SNACK: 1/2 of a full graham cracker and milk
DINNER: 3 Puffy Cheetos, 3 crunchy cheetos, shredded cheese and more chips (I wasn't home and this was Dad's idea of dinner)
SNACK: Ice Cream with chocolate and sprinkles and M&M's (again, Dad was in charge)

I know this might not sound like much but this is so very much more than he has ever ate before!!!

THINGS ARE GETTING A LITTLE BUSY........

This week is just a little busy and a little taste of what the year holds. First, we saw Dr. Kelley on Monday. Coop's current weight is 25lbs and this week we can only hope he can maintain that. We are giving eating a real try. For the next 7 days we are not fortifying Coop's milk, and we are only giving him water an hour before meal times and at meal times. Our hope is that he will get hungry and start to eat. Today was our first day and well, at least he tried things. He ate a bite of pasta at lunch time and a carrot dinner. He had some other things such as crackers, Popsicles, pringle stix, yogurt, etc. He didn't eat enough that would make any of us even feel like we had a snack but he did try things. I am really really nervous about it and just hope he doesn't fall behind. We have several indicators to watch for and next Tuesday we will go in for a weight check to see how he is doing. At that point we may go back to our old way of fortifying milk if he isn't doing well or if he is doing well we will continue. If we don't succeed this time, we will wait 3 or 4 months and then will try again. Someday we all know he will eat, we just have to see when.

Raelynn's second day of school was harder than the first. As I dropped her off she went in the gym for a story before the dismiss her to her classroom. I don't know what it was but just to let her go and hope she made it to her classroom about killed me. Never mind the fact that there were multiple teachers around to see that she did indeed make it to her room. I know it will get easier but right now it is harder for me to tell her bye each morning than it is for her to tell me. However, I think we are equally happy to see one another at pick up time. She is loving school and is meeting several other really nice kids and only 1 boy that is not very nice at all. :)(that is in her words)

Tonight was my first PTO meeting and yes because I thought I needed some more things to do, I volunteered for a couple committees. I think it is important for us to be involved in her school. We stayed involved in preschool and we will do the say now. I enjoy knowing what is going on in the school and meeting those that Raelynn spends her day with so I am happy to take on a few more things. Besides, I figure at this point, what's another couple projects, heeheehee!

I have started a new bedtime routine with Raelynn. After our story and prayers and after lights are turned out, I lie with her and ask her what her favorite part of the day was and then after we discuss that I ask her for the worse part. It has really be great. I hear stories that happened during the day that I hadn't heard yet and I have even been a little surprised once in awhile by what her favorite part of the day is. Anyway, tonight she says to me, "what was your favorite part of the day?" "That's easy, when I woke you and Coop up this morning because I knew I had a whole day of surprises and a whole day to talk and laugh with you." She giggled and mentioned a couple funny things that she and Coop did today. Then she asked the worse part of the day? I couldn't really think of the worse so I responded, "Raelynn I am so lucky and love every day with you and Cooper so much that even the bad parts don't seem all that bad." She said, "well then I guess putting us to bed is the worst part because you won't see us until morning!" I love her thinking and with a big smile I agreed. Then it was time to go in and give Coop his goodnight love. Now Coop and I are going through some separation issues because we don't have near as much time together in the mornings that we used to. So I knelt down beside his bed and he says, "Lay with me Mommy." I happily obey. "Snuggle close Mommy" as he wraps his little arms around my neck. "I love you Cooper." "I wuv you too Mommy." "Mommy when I get big I live on a big ship and be a pirate." "Will you still come visit Mommy and give me hugs and kisses?" "You come on ship too, you take me potty." I could not help but crack up, there world is so small and so centered around what is happening now. I love this age and this development. His imagination is expanding right along with his base of knowledge. He is our little comedian and I think he makes us all laugh more than Raelynn ever did and let me tell you we laugh a lot. Oh the perfect ending to another perfectly wonderful and busy day!

RAELYNN'S 1ST DAY OF SCHOOL............

What a wonderful day! Today was Raelynn's first day of school....well kind of...but as far as we are concerned from this point forward it was her first day of school. The morning went well and Raelynn and I were ready to walk out the door at 7:30 a.m. Raelynn was ready to go and didn't seem apprehensive at all. Coop was excited that Daddy was taking him to Mary Beth's. We got to the school early so we would have time to find our way around and take plenty of pictures. It was amazing walking her up to the school. I can't really describe how I felt. I wasn't sad because she was growing up or scared for her I was just so proud. To watch her walk so confidently up to the doors looking adorable and caring her back pack was awesome. We walked in and of course the school office was right there. The school nurse is our neighbor so we stopped to say Hi and before long those in the office realized I was the one who brought there daughter on the wrong day. They did not let on to Raelynn at all and only made me feel perfectly fine with my mistake. If these people are really this kind and fun we are going to love our years here! So we finally made it past the office and were on to Raelynn's classroom. Her teacher met us with a smile on her face and assured me I was not the first to make this mistake and that it was no problem at all. She was simply joyful and you could just see in her eyes that she loved these kids already. I got Raelynn settled, met the class guinea pig and gave her one last hug goodbye. I was surprised I didn't really feel like crying at all I was just so happy for her that she was in such a friendly and warm place. When I picked her up she came walking out so big and all smiles. Her teacher gave me a thumbs up and said they had a great morning. Raelynn loved it and thought all the kids were really nice. Her comment was, "the boys are much better at this school than my last school." I couldn't help but laugh, oh the difference a year can make. I treated her to a special lunch at her favorite place, McDonald's. She was so excited because we hardly ever go to McDonald's and she knows it is a special occasion when we do. We had to eat quickly though because today was also Coop's follow up appointment with his cardiologist in Kansas City. To back up just a little bit, I get terrible migraines. I have since I was about 12. I take daily medication to keep them under control and on the rare occasion that I get a full blown one, I have another very strong pill. Well about 10:40am I was sitting at work and my vision got all spotty and I knew what was coming. I was trying to ignore it but I knew what was happening. Not today!!! I took one of my pills which usually pretty quickly resolves my vision issues and sensitivity to light but does nothing for my nausea let along the headache. So when I picked Raelynn up I was doing all I could to stay upbeat and not let on that all I felt like doing was throwing up and sleeping. Anyway, by the time I made it to Mary Beth's to get Coop the vision stuff was over but literally I did not know how I was going to make it to KC with Coop. Raelynn wanted to go too so off we went. It was the longest drive ever. Terry was already in KC and I begged him to meet us at the doctor's office as soon as possible. We got to the appointment and Terry showed up about 10 minutes later. Once we got in the room the cardiologist was running late to say the least. We didn't actually see him until after 3p.m and our appointment was at 12:45pm. The good news is, I fell asleep for a little while in the room and fortunately when I woke, the worst of it was over and I never did throw up! That is a big step! Anyway, we finally saw the cardiologist and Cooper is doing fabulously!!! I think Dr. Kaine is proud of how Coop has came through all of this. He always talks about how we came from such a rocky road and now look at him! Unfortunately they did his height and weight when we first got there and because I was out of it I have no idea what it was but he has to see Dr. Kelley Monday so we will get it then. Anyway, Dr. Kaine took Coop off all his heart meds except the aspirin which he will stop after 6 months post op. I can't even imagine what we will do with that extra time of preparing meds twice a day! We also found out that it is probably because of the aspirin as to why Coop bruises so easily although Dr. Kaine said he thought his bruised legs just look like a normal little boy :) which was great to hear! So all in all, despite the migraine, it was a perfectly wonderful day! As I put the kids to bed I told each of them how proud they make me for such different reasons. I think that is part of the joy, knowing that I have two wonderfully different children that challenge me in completely different ways. I remember often thinking in the beginning if I would love Cooper as much as I love Raelynn and now that thought makes me laugh. I do not love them individually now and they do not individually fill my heart but together they overflow it. I have truly been blessed!

Enjoy a recap of Raelynn's 1st Day of Kindergarten!

THE UPS AND DOWNS ONE DAY CAN HOLD......

Today was a day with so many ups and downs. This week we have been practicing for Raelynn's first day of school on Friday. We have to be at the school at 7:45 a.m. and we figured we better practice. It has went really well and Raelynn seems ready. Then there was today. We didn't get ready right on time but that was ok because we were just practicing. We have been talking all week about her "big" day and how exciting it was. We had identified some things we needed to adjust in our schedule and we were ready. Tomorrow morning would be our big day. So off to Mary Beth's we all went and the morning was going just fine. I took my lunch a little after 2pm and headed to the pharmacy to pick up Coop's meds and then run them home real quick. I ran in the house, put the medicine away and noticed we had a message. As I was walking out I hit the message to listen. It was Raelynn's new school wondering where Raelynn was for her first day of school today. What!!!! I instantly started to cry. Is it possible that I had screwed up their staggered schedule and instead of Raelynn's first day being tomorrow it was today? I dialed the school as fast as I could. I was already crying and I think they just took pity on me. Somehow I had in my calendar that the afternoon kindergarten went on Thursday and the morning Kindergarten went on Friday but instead it was the kids with last names A-L went today and M-Z go tomorrow. Anyway, the school was perfectly nice and are allowing me to take Raelynn tomorrow as I had planned. I bet I cried for a good hour and continue to feel like it every time I think about it. I cannot even tell you how perfect I try to parent and I just failed drastically. I was heart broken for my daughter. She missed her first day of school!!! Anyway, I did not tell her anything about it and as far as she is concerned tomorrow is still her first day of school. Which leads to another story of drama..... tonight I had a Cooper's Cause 5K meeting and then a conference call. I got home about 8:20 and Terry had the kids all ready for bed and they had a great evening. Raelynn and I headed to her bed for story time while Coop and Terry headed to Cooper's room for story time. I read Raelynn her story and tucked her in and then it happened......she began to cry. She quickly told me she missed her old school (preschool) and her old friends and was scared about her new school. She went on to tell me that we had to always live in our house because she would miss it too much if we moved. We layed on her bed and talked for about half an hour. I told her some of the exciting things that would happen at her new school and the opportunity she had to meet new friends. I reminded her that just because we go to a new place and meet new friends we don't forget about our old. I reminded her that our hearts were so big and we had room for as many old and new friends and places we meet and visit. I reminded her that part of growing up was also being brave and welcoming new experiences and that these experiences would just make us better people. I told her about when I went to college and how scared I was but how great it turned out to be because I eventually met Daddy and had her and Coop. She interjected from time to time and when I thought she would be ok and gave her one last kiss goodnight she says, "It will be a great day Mommy, because I will get to see you when you pick me up and take me to Mary Beth's!" Tears, again, came to my eyes but this time not because I felt like I had failed her but because she made me feel like I hadn't.

Besides the Kindergarten drama, Coop also had some excitement. As you know he does not eat but has been making a little progress. Tonight while I was at my meeting, Daddy treated the kids to Sonic. Cooper decided he would try a little sonic too. He actually took a few bites of apple, grilled cheese sandwich and drank some chocolate milk. Terry sent me this picture while I was at my meeting which could not have made me happier....

Wish us luck on our not really first, "First" Day of School!

FAIR FUN.....................

Friday night was our adventure to the fair, and an adventure it always is. The fair is one of those things I feel like I cannot deprive my kids of but it also can be a little scary allowing your kids on rides you really know little about and there can sometimes be quite the "people watching" scene too. Oh yes and for those who really know me......it is just so dirty out there. Anyway, putting all that aside, the fair is always a good time. This year we met one of Raelynn's friends from preschool. This was a huge treat for Raelynn and we had a great time feeding animals, drinking lemonade and riding ponies.



After that we headed to the rides. Raelynn loves the rides and luckily still stays down on the kiddie side where the rides are not too scary. Raelynn was an awesome big sister and took Coop on many adventures hand in hand. Cooper had a great time too. Some of the rides he was a little scared but he never hesitated to go on the next.

Friday night ended very late and Saturday morning we were up bright and early for swim team practice for Raelynn and then errands and then play date for Raelynn, cleaning house for me and nap for Coop. In the mix of all that Steph and Cody came up to attend a wedding in KC. On there way up I get a call from Steph, "Is it ok if you dog sit while we are at the wedding?" Funny, what if I said no! Anyway, I gladly dog sat for Gus. Gus is a very small black dog. He is still a puppy but is potty trained so he is one up on Coop. Steph and Cody left around 2pm and Raelynn was at her play date and Coop was laying down for a nap so Gus was all mine. I was cleaning house and you would think a little puppy would be no problem and really he wasn't other than I kept losing him. The first time I had put him in our backyard and when I went to check on him 10 minutes later I just caught a glimpse of his little black tail as it exited out backyard through the hole he had dug under out gate. I ran after him and decided the backyard was not going to work. Minutes later I lost him again in the house. I looked everywhere. I called Terry in desperation. I was looking everywhere when Terry suggested I lift up the foot rest of the couch and sure enough there the little stinker was. This is how our entire afternoon went. By the time Raelynn got home I was tired of trying to find him and had just given up. Raelynn ran in the house asking where Gus was. I looked right at her and said, "I have no idea other than in this house. I don't have to know where he is until we go to bed tonight, but if you find him please keep an eye on him." Raelynn laughed and seconds later had Gus in her arms and wouldn't you know it she didn't loose him even once. Steph and Cody got home around 9pm and we stayed up talking which is always nice. Today it was up bright and early again for a run and then to Raelynn and Cooper's horse show. Raelynn placed first again and Cooper second! I will leave out the part that they were the only two today :). Then this evening we had our first "new school" job. Raelynn's new school had a clean up night to clean up the school grounds. Boy was that hot and hard work. It was great though to pitch in and help make the school look ready for the upcoming year. We met a few people and I think it is good for Raelynn to see that we want the best for her in her new school. She and Coop did a good job of helping too.

Besides all of that excitement Coop is making us smile daily. His knew favorite phrases are "I told you so!" "I didn't do it!" "I tell Mommy!" In addition to his new phrases we have also entered a new phase in potty training. It appears that our son is acting much like Poho, our dog. When he has to go to the bathroom he still refuses to tell us but instead will just go and stand by the bathroom door. He doesn't do it all the time but often I find him though, ask if he has to go potty and he always responds, "yes, I go potty" and he does. I think it is pretty funny but at least it is progress. We also got some exciting news, Coop's story has been posted on the CMH Million Reason Mosaic. You can see it by visiting www.millionreasons.org and then search "Cooper's Journey Continues".

Raelynn continues to be her awesome self.....most of the time. She is working hard to get ready quicker in the mornings and on Friday last week she was so efficient she even got her brother ready. At one point, when she was trying to dress him, I hear her say "Get over here Buddy, 1, 2 don't make me say 3!" I thought I was going to loose it. I was laughing so hard! She is also giving me a few challenges. Tonight, I asked her to do something and she actually told me "No!" She looked as surprised as I did and I very calmly explained to her that she was never to tell me "no", I think she got it. :) Then tonight she and Cooper were making "Poopy" jokes at the dinner table. I asked them to stop and they did but seconds later she cracked another joke. I looked at her and said, "Did I not tell you that was enough?" She responds, "You did and I didn't listen. I think I must just be tired. I guess it is straight to bed after dinner." And straight to bed she went. I am not really sure how you discipline when they discipline themselves but she was right, she was tired. I tucked her in, went and brushed my teeth and when I walked by her room, she was already asleep. So I can only hope that she will continue to recognize when she is wrong (yea right) and know when it is time to turn in early.

Another end to another perfectly busy perfectly wonderful weekend and looking forward to what is sure to be another exciting week!

COOPER'S CAUSE 3RD ANNUAL GOLF TOURNAMENT.......

Friday was our annual golf tournament. This is the one event with the foundation that I really have little to do with so it is the one event I really get to enjoy. This year our friends suggested we have a lemonade stand and let the kids run it at the tournament. We loved the idea and our friend, Brianne, took on the entire thing. She got everything ready and ran the stand all day with the help of her son, Cayman, Cooper and Raelynn. It was a long hot afternoon but the kids had a great time and managed to raise $145 for Cooper's Cause. It was great to have them out there!!! The rest of the tournament went great as well and raised over $12K to benefit pediatric heart patients and their families. It is truly amazing to me how far the foundation has come in 3 short years. I remember back to the first night we had the idea of forming a foundation....then I remember our first meeting with an attorney and accountant who explained what exactly we were getting into. I had no idea what all it involved but we had already committed to doing it by the time we met with the attorney and accountant and didn't feel we could back down. Thousands of hours later I could not be prouder of what we are doing or more thankful to all of those who help us. We could never be doing this without all the people that volunteer and participate in our foundation. Thank you, thank you, thank you.


So after a very eventful Friday, Saturday morning we got up and went to Raelynn's swim team practice and then off to our friends pool party. It was a great time! Terry and I don't go out ever so when there is something that we can get adult time and still enjoy time with the kids, we are pretty excited. As I put our exhausted kids to bed last night I told them they could sleep in but I guess they missed that part and 6:30 this morning we were back up and at it! Today we went to church and then it was home for some down time. Unfortunately both kids have runny noses and coughs so we went to bed early tonight and I am hoping morning brings healthy kids. They were both pretty whiny today but understandably. Over the past week we did not have a single night that wasn't booked with things to do or places to be. I am planning for a quieter week this week as Raelynn will be starting back to school the following week. I cannot believe the summer is almost over, I just continue to wish there were more hours in the day, days in the week and weeks in a year. There will never be enough time to enjoy everything I want to enjoy with Coop and Raelynn!