OUR FIRST FOUNDATION MEETING....

Last night was our first Cooper's Cause Foundation Meeting. I cannot even tell you how excited I am. First of all, I do not think we could have selected a better board of directors. They all seem to have fundraising experience and no one was hesitant to offer suggestions. We are all ready to make this foundation something big and make big impacts on families' lives. We have already established committee heads for 3 of the fundraisers for next year and hope they will begin working right away. There are also some additional fundraisers I found out about today I am really excited about but cannot say just yet as the final "ok" has not been given. I would never wish to go through what we have nor would I ever wish this upon Cooper, but given the situation, I could not be prouder to be where we are now. We were given such a challenge and have been so fortunate to make something so good out of it. I don't think we could honor Cooper any better than to be doing what we are now. I hope he grows with the foundation and has the passion and respect we do for everyone involved.

Today was election day! I wish I would have taken Raelynn with me to vote. I think it would have been a good experience for her but unfortunately our schedules did not allow for it. Raelynn enjoys watching the news in short spurts these days. She is quite the weather woman. This morning I told her I had to go early to vote. She of course wanted to know what vote was. I explained by saying we choose who we want to run the world. I don't know why I said world, I was trying to find words she would understand. As soon as I said it she says to me, I thought God ran the world. I smiled as I am trying desperately to leave not only to go vote but to get away from these difficult questions from a 3 year old. I told her that I misspoke and we vote to see who is in charge of our country. Then she wanted to know what "our country" was. I said it is where we live, she says I thought we lived in Lawrence. Needless to say I was getting no where. Then the guy on the news says something about election day and to get out and vote for our next president and Raelynn turns to me as though I had been completely wrong about everything I was telling her and says, Mom you're voting for the next president, Obama or McCain, you should watch the news. What!!!???? It was that simple. I didn't have to explain who or what a president was, just simply tell her that I was voting for a president! I would have been out the door 15 minutes earlier had I just known! It was cute though and just reminded me she knows more than I think. Raelynn also got her first homework assignment today. She was to practice squares, rectangles, diamonds and cutting out circles. Before bed we got a story book that has these shapes and each time she saw one I asked her to draw it on a piece of paper I had given her. Well, I now know why she was sent home with the assignment. It is quite apparent that my daughter has inherited my inability to comprehend geometry. I am sure her father is very disappointed :). After 20 minutes of drawing squares and rectangles we decided we would save diamonds for another night. I wonder if her teacher would find humor if I taught my daughter diamonds came in rings, necklaces and earrings and their shape was irrelevant but rather the color, clarity and size were of the utmost importance? Not sure I should go there yet, but it is much more interesting than trying to explain to her why her squares and rectangles look the same and they shouldn't and why it is of any importance to know how to draw them anyway :) (No worries, I really do not project that to my daughter, I keep it for complaining to Terry later.)

HAPPY HALLOWEEN....

We had a great time at Halloween. Every year Terry is in charge of carving pumpkins. I do not have an artistic bone in my body nor do I in any way enjoy doing anything crafty and carving pumpkins definitely falls into that category for me. However, I truly love watching them and taking the pictures. Anyone that knows Terry knows he is a perfectionist and watching him try to make perfection out of carving pumpkins with a 3 year old is very entertaining.


They had a great time and gave Terry a reason to get out some of his tools, oh yes, in this house pumpkin carving is done with power tools!




Raelynn had a Halloween Party at preschool too on Friday. I went to work feeling horrible because they had the first 45 minutes the parents could stay and the kids had a little parade. I felt like I could not take off work so Terry stayed. I know it all meant the same to Raelynn having Daddy there but I felt horrible. I sent the camera with Terry and asked him to please take no less than 10 pictures so I could see how it went. Like the perfectly wonderful husband he is, he showed up at work with the camera and 20 some pictures for me to look at as soon as he left preschool. I was so happy to see them. I guess Raelynn was a little shy at the beginning which carried right on into Halloween night. She said everyone dressed up scared her. Silly girl! Anyway, we got home from work Friday night and got the kids dressed up and out we went. We still just visit a handful of people we know around town and then usually walk one area. The kids had fun and we got to see all our friends and their adorable kids.


This morning we got to watch Kaden for a few hours. It was so much fun. He and Raelynn played and played and played. Kaden tried to play/wrestle with Cooper but Cooper was just not quite ready for that yet! It was all so cute and fun and made my job really easy. It is amazing how much easier it is to watch other kids once you have your own. They completely entertained one another and I even tried to play with them but Raelynn told me it was just play for her and Kaden. I guess Mom is already not so cool!!!

THE RESULTS OF THE MRI.....

I received a call today from our cardiologist Dr. Kaine. When doing the MRI post ECMO the things they are looking for are signs of stroke or serious hemorrhaging that has caused damage to the brain. None of this was found. However, the professionals that read the MRI did determine that Cooper had Grade 1 Germinal Matrix. Let me start by simply giving you the text book definition:

Germinal matrix hemorrhage is a bleeding into the subependymal germinal matrix with or without subsequent rupture into the lateral ventricle. The microcirculation in this particular area is extremely sensitive to hypoxia and changes in perfusion pressure. It is most frequent before 35 weeks gestation and is typically seen in low birth-weight (<1500g) title="Premature birth" href="http://en.wikipedia.org/wiki/Premature_birth">premature infants.

The way I understand it from researching it is that it is bleeding in a small layer of fluid in the brain. It is most common in premature babies and babies with low birth weights. It is also found in cases where there is a change in the blood pressure or blood flow in the germinal matrix circulation which is probably what happened in Cooper's case with ECMO. So now what? Dr. Kaine presented it to me in this way. Cooper is fine. Dr. Kaine said with a chuckle, "sometimes these people reading these results feel like they have to find something so they do." He did not seem concerned. He said we know Cooper is developing well and there are no signs of neurological damage or seizures which are also common with more severe cases. He said that he would send the results to Dr. Kelley. He said to have Dr. Kelley call CMH Neurology and determine if any further imaging of the brain needs to be done. He reminded me that just as with the genetic testing, we are going hunting for things with Cooper. If we were to examine ourselves as closely as we are examining Cooper, we are bound to find irregularities as well. Terry and I are not overly concerned because we see how Cooper acts on a daily basis and we see no signs of brain damage. I cannot say that it is not on my mind, and I am definitely eager to talk to Dr. Kelley, but I am doing my best to not worry. The information I found while researching on the Internet is very complex and technical so it has left me with several questions. Once again I am sure Dr. Kelley will wish the Internet never existed but I will hopefully get more clarification once I talk with him. Dr. Kaine did a good job of explaining it, but to be honest the first time I hear any of the crazy stuff we have had with Cooper I only retain a portion of it and do not even know the questions to ask. I will find out more and keep you all posted. For now though, I will assume my baby is fine and continue to love every sloppy little open mouthed kiss he gives me, laugh at him dancing and hold my breath at every step he tries to take. Most of all, I will continue to hug him and thank God for getting us this far.

TODAY I WORE MY GLASSES.....

There are only about 2 reasons I ever wear my glasses in public. The first is if there is something wrong with my contacts or they have caused some kind of eye irritation. The other is if I know I will be crying......a lot.......

Today was a big day and a day I had not been looking forward to. We headed to CMH about 12:30pm for Cooper's MRI. Terry and I drove separate in case Cooper did have to stay, Terry could head back to get Raelynn. I cried the whole way over there. Not the gushing with tears kind of cry but that kind where your eyes just keep filling up with tears and sometimes one flows over and down your face. I could not stop thinking about our other procedures and how things went and how I just wished we could jump ahead 8 hours and see how this time would end. As hard as I tried my mind would not stop racing. Then it occurred to me that I had been so concerned about the procedure I had not even once considered the "what if the MRI did show something". I quickly stopped myself from going there. We were just a few miles away from CMH when I decided it was time to get myself together. I patted on some powder, refreshed the mascara and slapped on some lipstick and plastered a smile on my face. My "game face" was on. I was ready to go in there, smile politely, fill out the forms, answer their questions, play with Cooper along with Terry and pretend everything was just fine, something I am getting quite good at. We got checked in and Cooper was off playing with the many new toys he loves so much.

It didn't take long for us t0 get to the back and start the preparations. At first they were concerned about his cough but after talking with the doctors they decided to proceed. After about 2 hours of check in and prep work, the anesthesiologist was ready to come in, Dr. Daniels. I could not have been happier. He has been the anesthesiologist on 2 other procedures Cooper has had and we really like and trust him. He came in and gave us the run down and answered a few of our questions. Finally it was time to take Coop down the hall and do the hand off. I dread the hand off. It is the time when Terry and I have gone as far as they will let us go with Cooper and it is time to hand him over to the nurse and just hope and pray to God all goes as planned. To my surprise I did not cry. I felt extremely calm and ok with everything. Terry and I went to the waiting room and began to catch up on the newspaper and our magazines. 30 to 40 short minutes later they called us back. As we walked into the room, there lay Cooper, wide awake with no oxygen tubes or anything, just the little IV he had when we left him.

They were checking his Stats and he looked great. His SAT level was actually at 86, higher than it had been a few weeks ago. His breathing was good and Dr. Daniels told us there was no reason not to send us home. They pulled the IV, gave Cooper something to drink and we were outta there. It was great. Terry and I just kept hugging and kissing him. We picked Raelynn up from Lisa's and came home, together! It was perfect! I will call the cardiologists on Thursday to get the results of the MRI but they left us with the impression that had there been anything of importance they would have told us today. Everything went perfect, just as planned, for the first time ever! WAY TO GO COOP!

THE MRI IS ON.....

We saw Dr. Kelley this morning and even though Coop has a runny nose and cough, he thought we were good to go for the MRI. It is scheduled for 2 pm so we will see tomorrow how all of that goes. I know it sounds minor, but anytime we put Coop under I get a little nervous so I welcome any prayers. Also, Cooper has gained 1 oz. I know that sounds like very little but just maintaining his weight right now is what we are aiming for.

I will update tomorrow evening to let you all know how the MRI goes.