I AM READY FOR THE G TUBE....

Oh Wow, there is so much going on.....I operate best under pressure and when I am busy but I do have limits :) Last week we met with our accountant regarding the foundation. He was fantastic! I was in such good spirits after meeting with him and it seems that he is eager to help us and will be a huge asset in establishing the foundation. There is so much work to be done this week. I have set a deadline of Saturday the 20th to have all the paperwork back to our attorney. I am sure this week will call for some "all nighters" but I will just remember back a few months ago when "all nighters" were the norm around here. That should keep me going and keep my complaining to a minimum! Anyway, every day I get a little more excited about Cooper's Cause Foundation. I really cannot tell you how big this is going to be. We are going to make a huge impact on some people's lives just as Cooper and our friends and family have in ours. This dream we have is getting closer and closer to becoming a reality every day. I have never been a part of something this big or meaningful and I am amazed how it is all falling into place.

Cooper's eating is not going well at all. We have been pulling the tube every morning and putting it back in around 8:30 every night. I am getting to the point that putting it back in makes me literally sick to my stomach. Cooper knows when we are going to do it and he freaks out. It breaks my heart!!! He is drinking pretty well but shows no interest in eating. I am ready for the G Tube. I cannot continue to watch the difference in him from when the NG Tube is in and when it is out, nor can I continue to put it in daily. I don't know when Cooper will learn to eat but I finally feel it is time for the G Tube. We see Dr. Kelley on Monday and I will talk to him then. I want it done on Oct. 17th when Cooper goes in for his MRI. I don't know if they can make it happen but that is what I want. I also want everyone to pray for little Cooper. Surgeries have not went so well for Cooper. Even the routine Cardiac Catheter did not go so well. I am terrified to have him back into surgery and I cry even thinking about it. I wonder how I will do if we do have the surgery on the 17th. I wish I could tell you that I will be strong for Cooper but I am crying just writing about it. I am not sure how I am going to get myself together but once they give me a date I will figure it out. I know we aren't going in for anything complicated like heart surgery but no matter how much I tell myself that it just doesn't seem to help. Anyway, I will figure out how to deal with myself so that I can be there for Cooper just like a strong Mommy should. I won't let him down.

Today we celebrated our good friend Donovan's 3rd Birthday! Raelynn had a great time. I love to see her interact with the other kids. There were twins there also that were very close to Cooper's age. He actually sat and played with them for a short while. I don't think he knew what to think about people his age. It was cute to watch. It was a fun day and a great party!

Sometimes I think about how much the kids have changed my life but for any of you who know me you will realize just how much I have changed. Cooper's scrapbook has not been updated this month. I updated both of the kid's books every month and today is the 13th, and Coop's is still not done. I have not cleaned my house yet this week. Poho has not yet had a bath this week. I have hours of paperwork to do for Cooper's Cause Foundation. I have a few bills to pay. I need to update Cooper's Cause Website. I am a month behind on my Parent's Magazine. And yet, with all of that undone, I am headed to Wichita tomorrow to spend the day with my family at the zoo. Now you see why I am sure next week will call for some "all nighters". I cannot stand it when there is anything left undone. Yet, I am so excited about tomorrow and I know I will get everything else done while the kids sleep next week. Gary and Steph are going with us to the zoo also. I am looking forward to seeing Steph and love that she is close enough to do stuff with us. I am sure tomorrow will be a blast!!!

WHO WOULD HAVE EVER KNOWN YOU COULD BE SO EXCITED ABOUT A DENTIST VISIT....

There is no doubt I love being a Mom and think my kids are amazing but I am sure after reading this blog you will all think I have truly got to get out more, but these "firsts" are just so exciting!

Today Raelynn visited the dentist for the first time. We went to Growing Smiles, Kelli Henderson. This is a pediatric dentist and had come recommended. It was fantastic. From the second we walked in to the second we walked out Raelynn had so much fun. The place is of course designed for little people but the staff has it all figured out. There was no waiting at all, little people don't like to wait. They explained every instrument and ever little thing they were going to do to Raelynn. They talked to her at her level perfectly and constantly had her interacting with them. It was so darn cute I could not help but start taking pictures. I am sure they thought I was crazy but they didn't let on. :) Raelynn was a perfect patient. She had x-rays taken, her teeth cleaned and polished, a fluoride treatment and a whole bag of goodies. The place was incredible! I highly recommend them and they have us for life.

I thought that would be the highlight of my day until I received a call from Jill at Dr. Kelley's office. I had called earlier in the day to just discuss what had happened on Saturday with his eating. Once we put the tube back he had no interest in drinking and he again was throwing up quite a bit. Well we are making some big changes starting tomorrow morning. As per Dr. Kelley, we are pulling Cooper's feeding tube every morning and leaving it out ALL DAY!!!! We will put it back in for his over night feeding so he will still get some feeding. We will do this from tomorrow morning through Monday at which point we will go in to visit Dr. Kelley. They will do a weight check and make sure he is doing ok. We will reevaluate then and decide our next step. If this doesn't work I think I am ready for the G Tube. I think my fear of the surgery for the G Tube needs to be set aside so that Cooper can progress. After seeing how well he does without the NG Tube I realized what a difference it would make if he did not have that in his nose and down his throat. Anyway, we will address that on Monday after we see what happens over the next 5 days. I am so excited to try this and just wish I could be home with him to push him along. I know Lisa will do everything that needs to be done to make this little trial as successful as possible but I still wish it could be me. Anyway, the important thing is for the next 5 days, every day, all day, we get to look at and kiss and love all over Coop's entire face. His adorable face will be fully available for constant kisses. Raelynn is just as excited as Terry and I. At dinner tonight she was talking to Cooper and telling him if he does good during the day then maybe Dr. Kelley would let him sleep without it too. It was so cute.

So please cross your fingers, pray, wish on a falling star, whatever you can think of that Cooper will show an interest again in drinking and maybe even a little eating!!!!

COOPER DRINKS AND DRINKS AND DRINKS.....

As of Friday we were out of NG Tubes and I had made several calls trying to figure out where the ones I had ordered were. Finally we found them in Topeka and this really sweet respiratory therapist brought them to me at work. Luckily because Friday afternoon Cooper's feeding tube got plugged. I got it to work for his 3pm feeding but by the 6pm feeding it was blocked again and there was no fixing it so I pulled out. Terry was reffing football so Cooper was without his tube until Terry got home. As the night went on Cooper would take drinks of my water every time I got a drink myself. So we tried other things; milk, OJ, Yogurt Drinks and he was drinking them all. I was so excited. Terry got home around 12am and I didn't want to wake Cooper to do something as cruel as put in a feeding tube so we waiting until morning. Saturday morning Cooper continued to drink. He drank so much and so well. I called Dr. Kelley and he wasn't working but luckily our wonderful nurse Jill was. I told her what was going on and asked permission to leave the tube out until afternoon just to see what would happen. She agreed to that. Cooper drank all day long, anything and everything I gave him. It was great! He didn't really eat anything but he chewed on pretzels and licorice and did eat a little yogurt. He was so good and acted so happy all day. I wish I had video him drinking. He just drank it right down. We put the feeding tube back in Saturday evening and since then........no drinking! I don't know what this means but that tube must irritate him. He has taken a couple little drinks today but nothing much. He has thrown up some today too. I think it takes him a couple feedings to get used to it again because every time he goes without the tube the first few feeding don't go so well. Anyway, I am just so happy at how well he did but don't know what we can do to keep it going.

Back to Friday night, the kids and I are at Walmart and my phone rings. It says it's Terry. He should have been at his game and should not have been calling. I answered. "Kristi, I just thought I would let you know we just got rear ended!" Now you would think that since he was calling me and I could hear he was ok it would be no big deal but my heart dropped. He was fine and so was everyone else. I guess he was stopped in traffic and a girl behind him just wasn't paying attention and did not stop. It really didn't do too much visual damage to the truck but I guess the girls car was in really bad shape. Again, the important thing is no one got hurt but it sure makes you realize how much you love someone when you get the call all the same.

Saturday morning we met with our attorney about Cooper's Cause Foundation. I really cannot tell you how crazy it is to set up a foundation so that it is truly our foundation and not linked to another. It is just like setting up a corporation. It is going to be so great when it is done but it is definitely more than I had imagined. It is also difficult because since we are currently still benefiting from it, we really can't have anything to do with it. Therefore, we have to find a board of directors that we can trust to carry it in the manner we want. These people cannot be related to us or have any other business relationship to us. That pretty much eliminates most of the people I trust most. The attorney we are working with is holding our hand through everything and being great about it. I have to set up a meeting with our accountant this week and with the president of our board. He was the only board member we were able to actually keep. He is a long time friend of Terry's and we both feel very comfortable with him and are also thankful for the knowledge he already has about organizations in general. The other members we had chosen were all either relatives or business partners and therefore we were not allowed to use them. It will take some thinking but I know we will fill the positions. Once the foundation is established, then we can pursue what it is we really are looking to do, help someone else. I can't wait for that day!

All in all the weekend was great. I love having time with my family. The kids are so great and every weekend with them makes me miss them even more on Monday. Cooper is getting to the stage that he cries when I leave and as bad as it sounds there is a little part of me that loves that. It means he recognizes me and knows me and knows I will always take care of him. It also makes me feel horrible for leaving him. He is just such a cute little boy and his laugh is so funny because he tries to hold it in. You really have to get him going for him to laugh out loud! Raelynn continues to amuze us and teach us. Learning things all over again with her is so much fun. Today she was playing with her long time imaginary friend, Kendra. I am not sure what they were playing but I heard Raelynn say, "I have a very good Mommy, the best Mommy in the whole world." That right there was better than any praise I had ever received, any award I had ever won.

COOPER AND THE FEEDING TUBE....

I feel like Cooper's eating issues are like a not so good book at this point. It's boring but you keep reading waiting for the next exciting part and each time the exciting part gets a little more exciting than the last. Then you know enough to just want to jump to the end to see what happens. Well each time Cooper eats or drinks something I get so excited and then he does nothing exciting for awhile and then he'll eat something new and better and then back to nothing again. Now there is more talk about the G Tube and I am just ready to see how it all ends. We know it will end, he will eat someday, but we are getting tired. Tired of the relentless feeding schedule, tired of putting new feeding tubes in, tired of trying to think of new things he may eat knowing he probably won't and tired of watching him rub his nose and eyes and be completely agitated by the tube. He has a cold and the mucus and stuff keeps building up around the tube. He is starting to get a good grasp of how to pull the tube and once again he pulled it. I have 1 tube left. I had ordered some more than a week ago and they are still not here. Last night during the night Cooper threw up and it was all bloody. Dr. Kelley has told me there is probably some blood in his nose that is draining down his throat. How gross is that? How bad does that have to feel and taste to Cooper? We saw Dr. Kelley on Wednesday and he asked hypothetically if I was ready to put the G tube in. He is worried about infection in the upcoming flu and cold season if Cooper were to continue with the NG Tube. We are to discuss it with our cardiologist on the 1st of October and we will go from there. Cooper still needs circumcised too so they would probably do both at the same time. More surgeries, GREAT! I keep hearing though how much better the G Tube is. I just hope it would help getting him more interested in eating and talking. Who would have ever thought our biggest dilemma would be eating issues? I am just very tired tonight and worried about Cooper and Raelynn. I think Raelynn will freak when we go back to the hospital even if it is just for an overnight stay. Cooper is getting older now too. On Wednesday we had to have blood labs drawn to make sure his hemoglobin and electrolytes were ok. It was so much harder to watch and hold him because now he cries real tears; real big sad ones!

Tonight I was throwing away my laundry detergent bottle and the verbiage on the front jumped out at me.....96 Loads. The very thing that attracted me to the laundry detergent now made me sick! Because I was throwing it away, I knew I had done 96 loads of laundry. It had not been all that long since I bought it! Seriously, laundry dirties itself and crawls in my hamper at our house. There is no way the four of us dirty that many clothes!

ANSWERS TO CHROMOSOME 9...

So although the weekend started out a little shaky, Sunday and Monday were great. Sunday Raelynn and I headed to church and then ran a few errands like we do most Sundays. We really enjoy a little time together alone. Raelynn has just started going to her Sunday School class. In the past she insisted on sitting in church with me which was fine but I knew she would get much more out of her class. A few weeks ago she just decided she would go. Then Sunday we were walking in and she stopped and said she wasn't going in. I tried to figure out what was wrong and encouraged her that she would go. Suddenly she looked at me and said, "Mom I need some money". At first I made her repeat herself and when I confirmed that this is what she said I asked her why she needed money. She proceeds to tell me that last week they asked for money and she didn't have any. She was very bothered by this. I had totally forgotten about collection in Sunday School. Unfortunately I never have cash or change. She was so determined I told her I didn't have any cash but I could write a check, that is what I do for collection in church. She looked at me completely disgusted and said, "No, I'll ask Daddy for some next week, don't worry about it" and hopped down and walked into the room. I did not know whether to laugh or cry. My daughter is so beyond her years and at times I wonder whether her independence and intelligence will haunt us in years to come. But for now, all I can do is smile and continue to think she is unbelievable cute!



Sunday afternoon I cleaned the house and Monday we did nothing but play. It was great! Monday afternoon we headed to Bonnie's for more playing and lots of food. It was a good time! Raelynn loves it at Aunt Bonnie's. She loves seeing the horses and playing with her cousins. Cooper got to play with his cousin, Jackson, too. He is just 6 weeks younger than Cooper and so it is a good reality check for me on Cooper's development as well. Cooper and Jackson were sitting together playing. Jackson took the toy Cooper was playing with, please note it was Jackson's toy to begin with, Cooper reached over and grabbed Jackson's shirt and began shaking Jackson and yelling. I know I should have intervened right away and I did eventually but at first I couldn't help cracking up. There little Cooper, who I try to protect from everything, was being the bully! It was so funny to see this. Of course I will discipline my child and not let him grow up to be a bully but it was so good to see him so strong. Of course Emily laughed right alone with me. She already has 3 other boys so Cooper's little bullying was nothing to Emily or Jackson!
The kids also love to see Nanny and Popo. I think Nanny is going to spoil Cooper! She didn't like to hold him when he was so small and with all his issues but now she won't put him down. Terry and I love to see this.

It is so fun to watch the kids with our families, it is what makes families so great! Raelynn had a good time with Popo too. Both the kids are always trying to play with Popo beard. Cooper pulls it and Raelynn combs it. Of course Popo is very patient with both.

Today I received a call from the geneticist we are scheduled to see next Tuesday. Because all the paperwork I submitted and all the reports she had read on Cooper she thought we could answer some questions over the phone. We were meeting with them if you remember because there is an extra band of DNA on his Chromosome 9. They did not know if this was anything to be concerned about but had Terry and I tested as well. Guess what? I have the exact same extra band on my Chromosome 9. This is fantastic news because since I am "normal" they know that Cooper's heart condition is not due to this and therefore it is not a genetic disorder. The funny thing is, they do not know what the extra band is or what it does and they have no other documented cases of it. That doesn't mean no one has it because most people are never tested but Cooper and I do and my Mom or Dad do too and so does their Mom or Dad. Isn't that so cool. There is this extra band on our families chromosome 9 making us all have a very identifying feature in our DNA. I think it is amazing they can tell us these things. Since this was our only question and concern there was no need for us to meet with them. They said Cooper's heart defect was a very complicated and extensive defect. If it were genetic due to this Chromosome 9 there would be no way that I would not have had a defect as well. They said Cooper's heart defect was just one of those unfortunate things that happened very early in development that was no ones fault or that could have been avoided. I say it was God's gift to us and was not unfortunate at all. Of course, I would never wish this to happen but just look what has come out of it. Cooper is amazing and has taught us so much about so many things already! He is a special little boy and I don't believe any part of him was an unfortunate mishap. Things are happening just as they are suppose to be!