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Wednesday, April 28, 2010

CATCHING UP..............

Well if my mind wasn't racing right now maybe I could make a post that could catch everyone up on our lives since last Wednesday but I really cannot think that I will have any order to this post so bare with me.

Last weekend was a whirlwind but we had a great time. We had the March of Dimes March for Babies walk. We were the ambassador family this year which made it even more special. My Mom and Karli came up to walk with us and we had a great time. I serve on the committee for the walk every year but I have to say this year seemed to be the best in regards to atmosphere and kids events. Raelynn and Coop had so much fun. The walk itself was even nice. This is actually the first year I have gotten to walk with my family.




After the walk we took Raelynn shopping for some new clothes. I love shopping with her and having Aunt Karli and Grandma there too made it even more fun. Raelynn ended up with some adorable outfits which she desperately needed as it was warming up. Unfortunately the first part of this week was too cool to wear them which was killing her. Coop even got a new pair of summer shoes. We have been so fortunate to get such great hand-me-downs from our friends that poor Coop never gets new clothes so I figured new shoes was the next best thing. Raelynn has been saving many for months now to buy this baby she so desperately wanted. I couldn't figure out why she wanted this certain doll so badly as she has plenty and that is why I wouldn't just buy it for her. So on Saturday she wanted to stop by Walmart and see if she had enough money to buy the doll. We had looked at it a couple weeks previously and so I knew she did have enough. Unfortunately when we got there she was $5 short. Luckily Grandma just so happened to have a "coupon" for $5. So Raelynn bought this little doll and as soon as we got home she went running to her room. Well come to find out, which I never realized, this baby she bought was the identical girl doll to a boy doll she already had. She was so excited because now she could give her brother the boy doll and now he would have a doll all of his own. So yes, I had made my daughter save her money for weeks and weeks so that she could en essence get her little brother a doll of his own. You see we have been looking for a boy doll for Cooper for weeks as well but have not been able to find one. She was so happy and they have played for hours with their babies. We also attempted to remove Raelynn's training wheels from her bike per her request. Unfortunately she wasn't quite ready for that. So the training wheels went back on and then Daddy took her bike for a spin to see that everything was working!

We have an exciting week ahead. Cooper is finally liking swimming lessons which is great so he is going swimming on Friday while Raelynn is having her first sleep over. She is so excited she can hardly stand it. We are going to make pizzas and watch movies and whatever other fun things we can think of. I love having her friends here because I love to see her have so much fun! Saturday night Terry and I are actually going out without the kids. We have two birthday parties to attend. We are actually getting a babysitter. This will be the first babysitter we have ever had that is not family or our best friends although we do know her as she coaches Raelynn's little soccer group :) Anyway it should be a fun filled weekend.

So there is so much I want to say and yet so little I can about some things. I have to say though, I am always amazed by the challenges life gives us but what I am equally amazed about are the tools God gives us to deal with them. God has given Terry and I two of the most wonderful children in the entire world. They have became my "tools" in dealing with every challenge we are faced with. Thank you God for giving me all the "tools" I will ever need!

Wednesday, April 21, 2010

SURGERY IS SCHEDULED.....

Well here we are again....pre op is scheduled for June 7th and Coop's 3rd open heart surgery is schedule for June 8th! I cannot say I am ready for it but it is good to finally have a date to work towards.

Thursday, April 15, 2010

COOP'S NEW LOOK & STAR GAZING.......

It is almost 11 pm and I have so much to do I don't know where to start so I am updating my blog instead.....and I say I never procrastinate! Yesterday Coop visited the eye doctor and the news wasn't great. His left eye is weak and his right eye is becoming dominant. Therefore, we now are patching his right eye to make his left eye work harder. He did pretty well with it today. We made sure we got some cute patches and in enough colors to match all his outfits, hahaha! He was a little whiny and sensitive today but I am hoping he gets used to it. We will be patching 2 days, off 1 until May 14th when we will go back to the doctor. I hope it helps him. Surprisingly enough he did not mess with it at all. I guess he figures it is just one more thing. Besides, he is cute no matter what :)


Tonight Terry had a meeting so the kids and I ran some errands and had some great time together. At bedtime we all read our story and said our prayers. I tucked Raelynn in and then put Coop to bed. After a few minutes making sure Coop was going to sleep I went back into Raelynn's room and told her to come with me. We snuck out onto the deck with a blanket and sat on the deck and watched the stars. It was incredible. We sat there talking about all sorts of things. At one point Raelynn whispered to be very quiet. She asked me if I could hear the stars twinkling. I told her I couldn't. She told me to listen really careful. We sat there in silence for a few more seconds. Then she just turned to me and said, "Thanks Mommy, this is the best night I have ever had." Wow, now I heard the stars twinkling and it was magical. As I carried her back inside and put her back in bed, she made me promise we could sneak out there again soon. I kissed her nose and told her I loved her. If she only knew, I would have loved to sit out there all night with her!

Tuesday, April 13, 2010

WHEN MOMMY IS SICK, MOMMY #2 TAKES OVER......

Today I woke up with stomach cramps. I managed through most of the day but by late afternoon I truly thought I was going to die. There was one other time I had this same stomach ache when we were in the hospital with Coop on his 2nd surgery. The nurses had tried to get me to go to the emergency room then but I remember after feeling like I would rather die all of a sudden it went away. So today I just kept thinking it would go away. By the time I got off work and got the kids I was almost in tears. I told the kids on the way home that I had a terrible stomach ache and that when we got home I would like them to just play for a 1/2 hour or so and let me lie down. We got home and little Miss Raelynn went into Mommy gear. I had no more than pulled into the driveway and she says, "Mommy will you get Coop out of his car seat and then you can go inside and lay down. I will carry in everything and get Coop inside." It was so sweet. Needless to say, I carried my stuff inside and made sure the kids were in, but then I did change and lay down. Raelynn got she and Coop a little snack and drink and they sat in the kitchen talking away eating there snack. As I lay on the couch listening to them, I could not help but smile even though my stomach her so bad. Raelynn continued to take care of everything from letting Poho out to laying down the rules for Cooper as he played outside. I even heard her say to him as I assume he was dumping sand out of the sand box, "Cooper! Now is that a good decision? If you do that we won't have any more sand in our sand box. Is this what you want?"(By the way our backyard is fenced :)) I guess Coop decided it wasn't a good decision and started following the rules because next I heard her tell him, "That's a good boy Cooper, it's important to follow the rules like Sissy." I text Terry around 7pm hoping he was on his way home which he was. I called Raelynn in and told her they needed to come in for dinner. Raelynn helped get Coop washed up and helped make their dinner. When Terry got home about 7:30 pm, she and Coop were in the kitchen eating dinner having a good 'ole time. Throughout the evening she checked on me regularly and helped heal me with her kisses and "I love yous". And sure enough, just like before, all of sudden it was gone. My stomach didn't hurt anymore. I have no idea why this happens but fortunately it did just before bedtime so that I got to read bedtime stories and give the kids their goodnight love. Not that I want to be sick ever, but at least now I know when I am, my backup is ready to go!

Monday, April 12, 2010

A WHOLE LOT OF FUN..............

Where do I begin?! This weekend was so much fun. My family got into town on Thursday night late! Friday Terry and I were off to work, Raelynn to school, Coop to Mary Beth's and Mom and Karli prom dress shopping. I met up with them over my lunch hour and helped make the final decision. Karli is going to look beautiful! She got a gorgeous dress! I have been fortunate enough to help both she and Steph shop for almost all of their prom dresses and I love it. I cannot wait to share that fun with Raelynn. The talk of prom and excitement actually led to me trying on all my prom dresses and even going back to my 8th Grade Promotion dress! If that didn't give us some good laughs! The good news is I could still wear them all although the 8th Grade Promotion dress would have definitely caused death from lack of oxygen if I had to wear it too long. This was Raelynn's favorite though because it looked like a princesses dress. Friday was also a treat because for the first time in months Coop took his swimming lesson without screaming. I have no idea why, but I guess he decided it was fun again. I was very thankful because I was getting to the point I was considering taking a break from swimming.

Saturday was our 2nd Annual Bowl-a-thon. It was a huge success bringing in way over our $1000 goal. The kids had a great time although it was very hectic. We also honored Raelynn for her being the original Rock Star that Raelynn's Rock Stars was created for. I think she felt pretty special and for once a part of Cooper's Cause Foundation was all hers.





Saturday night Steph and I attempted to make Mom a Lemon Meringue Pie for her birthday on Sunday. It was a disaster! First I bought instant pudding instead of cook & serve, the crust looked like death, and by the time we got around to using the meringue that we made way too in advance, it had lost it's stiffness. We basically trashed the entire first try and started again. The final pie was pretty good but still looked terrible. We actually had to have Mom help us on her own birthday pie to try to savage our disaster. It again gave us all a lot of laughs!
Steph and Karli laughing at my frustration....

Mom attempting to fix our mess....
(By the way, the beer bottle was definitely mine!)
The finished product....

Sunday was Mom's Birthday. We celebrated with a few gifts and of course, the Lemon Meringue Pie!
My family left after lunch and I did a fast and furious cleaning. Then Raelynn and I made banana splits and played some games while Coop napped. Then when Coop woke up we all headed to the park including Terry. It was great to get out and enjoy this wonderful weather! This is my time of year!

Oh, and we can't forget that Cowboy Cooper made his appearance this weekend and we haven't got the hat off of him yet!

Friday, April 9, 2010

THE CALL FROM CARDIOLOGY......

We got the call today from our cardiologist regarding their plans for Coop. As we thought they will be treating the branch stenosis or more specifically will be placing a stint in the left branch and perform angioplasty on the right. The will close the large VSD, or hole, between the lower two chambers of the heart. The big decision is that they did decide to place a valve in the right ventricle. Right now when Coop's heart pushes blood out of the right ventricle to the lungs there is nothing that keeps the blood from flowing right back into the heart. Therefore, Coop's right ventricle has been working very hard and fast to keep pushing more blood back into the lungs causing the right ventricle to become very enlarged. Due to it's size they will be placing and adult size valve into the ventricle but the life expectancy of the valve is only 5 to 8 years so it will have to be replaced at some point. Dr. Kaine preceded to explain that this surgery will be very complex and there were multiple teams involved. Therefore, scheduling is going to be no small matter. They will call next week to START scheduling but reminded me to be flexible in that there are many things and people that have to fall into place to carry out the multiple corrections they are attempting to make.

Terry was very pleased that they decided to insert the valve and I am too, however, I am terrified. To hear your cardiologist use terms like "complex", "complicated", "multiple risks", "extensive"; I get a litter nervous. I do know that we will approach this open heart surgery just as we have the others with complete faith in the teams brought together to perform and faith that God will watch over our precious little Cooper!

Thursday, April 8, 2010

WACKY HAIR DAY & KINDERGARTEN ROUND UP....

Today was a VERY exciting day for Raelynn! At preschool it was Wacky Hair Day and let me tell you we made is WACKY! It was actually pretty fun and I tried to make it look just like Raelynn had described she wanted it. The only thing we left out was hair color because I had to be able to make a transition from Wacky Hair Day to making a good impression at Kindergarten Round Up. I wasn't sure what they would think if their first impression of my daughter was this and green hair!.........

So I picked Raelynn up from preschool and we headed back to my office for an hour or so before we went to kindergarten roundup. At the office I managed to comb through her mess and put the straightener to good use. Before I knew it Raelynn was back to normal and then off to the second part of her day. I cannot believe she is going to be in Kindergarten. Part of me is so excited, part of me is so nervous/scared and some of me is just a little sad. Raelynn is such a special daughter, I cannot imagine a better one. I love her more and more everyday and our relationship grows deeper and deeper everyday. I love that she is getting bigger and I love to watch her grow emotionally but I can't help but know that some day she will be an adult herself and I can only hope that I will still be a huge part of her life. So Kindergarten Round Up was great. We met the principal, the school nurse who happens to be our neighbor, her teachers and others. They all seem wonderful and I can't wait to get more involved in her school and make her experience be the best it can be. She was very excited too and just thinks she is sooooo big. This is going to fun!

Tuesday, April 6, 2010

EVERYONE IS DOING GREAT....

First I just want to thank everyone for all your thoughts and prayers for Coop's surgery on Friday! We made it home around 4:30pm on Friday. Our weekend was so busy and we gave Coop little recovery time but he seems to be doing just fine. Saturday we went to Popo's house for our Easter celebration. We had a great time. Besides a wonderful meal the kids had a fun Easter Egg Hunt and decorated a flower pot and planted a flower. It was all so much fun.





Sunday morning the kids woke up to an egg hunt from the Easter Bunny and so many goodies. We then headed to church where there was yet another Easter Egg Hunt. The kids loved each egg hunt and we enjoyed so much time with our friends and family.



After church we came home and started on yard work. It felt so good to be outside again!!! It was a great weekend.

Friday, April 2, 2010

COOPER IS IN RECOVERY.....

The procedure is complete and Coop is doing great. We just got out of consult with Dr. Kaine. Nothing has really changed other than Coop has grown and so has his vessels and heart. What they know they will do with his next open heart surgery is repair his very large VSD which is the hole in between the right and left ventricle. They will also place a stint in the left vessel that supplies blood to the left lung. This vessel is very restricted and is restricted in a large area. They will also be p;performing angioplasty on the right vessel that supplies blood to the left lung. This vessel is restricted by scar tissue but in a very confined area. This area was actually fine until they placed the BT Shunt in the left vessel right after he was born. In order to put the BT Shunt in the had to enter through the right vessels to get to the left and it is here where it is now restricted by the scar tissue. What Dr. Kaine has to decide with our surgeon, Dr. O'Brien, and the remainder of the team is what they are going to do with valve issue in the right ventricle. The right ventricle is very enlarged and they cannot let that go on forever. In order to help this they need to place a valve in the right ventricle that Coop is missing. What they have to decide is whether the benefits out way the risks to doing the valve surgery. He will have to have it at some point they are quite sure and Dr. Kaine would like to see it there sooner rather than later but there are great risks to this. Likewise there are great risks to not doing it as well and Dr. Kaine thinks we will have difficulty with recovery just as we did last time but maybe not as severe if they do not do the valve. Anyway, they will all get together and decide what is next for Coop. They consult on Fridays so we will not hear from them until next Friday afternoon. Hopefully we will be back with Cooper in the next hour or so. They have arranged for us to meet with Moe, the occupational therapist about Coop's eating issues. Dr. Kaine did not feel Coop needs a GI consult. We will see where this leads. OOOOO....they just called us on our way to see coop!

COOPER ON VERSET.....


This is Coop bright and early as we waited for Dr. Kaine. Then the video below is Coop watching this Easter stuffed animal after his verset. I have no idea if it will appear as funny to you that were not there, but it was pretty funny for us that were!
(It may appear like nothing is there but just push play and you should see it fine)

HE IS ON HIS WAY...............

Things were a little slow getting started this morning, but he is in surgery and we just got a call that the breathing tube is in and they will begin soon. They give him Verset (SP?)why he is still with us and I tell you this stuff works immediately and makes him hilarious! Our quiet bashful boy turns into this dramatic talker. He had us all laughing. When Vicki, the nurse, took him back she said he talked to her the whole way and when she flashed her badge that automatically opened the door Coop literally yelled, "WOW!". They said he went to sleep without a peep. This gets easier every time, there is not near as much consulting with us and questions to answer so we move right along. It does not sound like they intend to have us meet with the GI team today so once he is up and going maybe we will be on our way home! Raelynn is at home watching movies with Aunt Steph so everyone is doing well!

Thursday, April 1, 2010

OK, HERE WE GO.................

This has been the longest and hardest week ever for so many reasons! But finally we have made it to Friday and we are set to check in bright and early in the morning for Coop's cardiac catheter, the last challenge of our week. His pre op evaluations went great today. He weighed in at 23lbs 8oz and was 2'8" tall!!! He was great today, a little bashful but great. We didn't see any tears until they drew labs but who can blame him for that. We will head out around 6 am in the morning. They anticipate the actual procedure to start around 8:30 am and should last about 2 hours. He will then go to a recovery room for about an hour and then to the floor where we will get to see him. He is not allowed to eat/drink after 2:30 am and then cannot walk for about 4 hours after the surgery. They hope we will be able to return home by tomorrow night if all goes well and we should have a pretty good idea when we will do the next open heart surgery. I will keep everyone posted tomorrow. We received so many emails, texts and calls wishing us luck and I cannot tell you how much we appreciate it. I never feel like we are going through any of this alone thanks to all of you. We have the best friends and family and in world! Thank you, thank you, thank you!