COOP PULLS HIS TUBE......

Saturday Cooper finally pulled his feeding tube around noon. We left it out a good 6 hours :) He actually showed a little more interest in eating but again did not eat enough. He had about 10ml of apple juice, 2ml of formula and he played with some green beans and jello but only drops made it to his mouth. The day was fabulous though. He didn't throw up which was so nice. We played and played without worrying about him grabbing that silly tube. He didn't spend the whole day rubbing his eyes and nose either. At bath time he actually got to play and splash and had a great time without me constantly trying to hold the tube up and avoid water on his face. It was all so great and I must say we were all, including Raelynn, very disappointed and sad to put the tube back in. I know it sounds crazy but Cooper was just so happy without that tube, it irritates him so much. If only he could realize all he has to do is eat.

Besides his stubbornness in not eating, he is also very ornery! He is starting to grab things he shouldn't, pull Raelynn's hair and really grab anything he can get to. When I tell him "No no Cooper" he just tilts his head a little and gives me this heart melting smile as though to say "I love you Mommy!" Seriously he is going to grow up to be terrible because I can't help but smile back. The boy will have no discipline!!! He is just so darn cute and his eyes and smile just blend together to remind you every time he looks at you what he has been through and how special he is. It is not just me either, Terry melts too. Raelynn told me the other night that he needed discipline because he kept pulling her hair. I laughed and said I try but it isn't working. So she took it upon herself and when he pulled her hair she said "NO COOPER!" He started to laugh at her and then she laughed and then said to me "I can't discipline him either!" Boy are we in trouble!!! He is getting very strong and loves to stand. He has to have help but wants to stand all the time.

Raelynn is her usual adorable self. There are daily laughs and I never know what she is going to come up with. I absolutely love my weekends with them. I can't wait to see them at the end of the day during the week either. This past weekend I was trying to teach Raelynn to write her name. It was not going so well. I told her just make an R like Mommy, how hard is it? She flipped the page over, drew a squiggly line and said " You draw a river like me". I took the pen and drew a squiggly line under hers. She looks at it and says, "Does that look like mine? How hard is it? Try again!" Of course we both started to laugh and I said ok, enough for today and we went on to other, less technical things. We also started a savings plan for Raelynn, an idea I got from Sherri. Raelynn has 3 envelopes, one for spending, one for saving and one for charity. We talked about the meaning of each and what she has to do to get a quarter for each envelope every week. She seemed pretty excited about it. Later we were all in the car and she was talking to Terry about it. After she told him about the 3 quarters she asked me, "why can't they be dollars?" She is already toooooo smart!

Cooper's Cause events are going strong. I am still amazed at the community and its generosity. I have an interview on the Lazer Morning Show on the 21st between 7:15am and 7:45am. I am a little nervous but just hope I come across as somewhat intelligent! Our friends are working so hard to get sponsors for the different events and participants. Honestly, I have no idea how we could make the ultimate dream of Cooper's Cause come true without every one's hard work. Our friends and family are amazing. I know I say this all the time but I really am in awe.

Sunday at church, Pastor Bill was doing the sermon on "How to Experience Real Contentment". There was so much of this that spoke to me because I always want more. But there were 4 things he said we needed to be content: Learn to avoid comparisons, Learn to adjust to change, Learn to draw on Jesus's power and Learn to trust God with my needs. Within these four he said the one thing that is constant in our lives is change. How true is this. Things are always changing and much of that we cannot control. Therefore learning to adjust to that constant change will help us find contentment. I feel like our life is in constant change right now and none of it I feel I have control over which is something I am not really good at. Listening to him Sunday though made me realize the changes are the constant in our life and learning to adjust is what we are doing daily. It was a very good lesson and made me realize that thinking about when things will be "normal" again is a silly thought. Things will never be like the were a year ago, a week ago or even yesterday but all of that will help us with what things will be tomorrow.

MORE REPORTS ON COOP AND JUST PLAIN MORE.....

Ok, so yes Coop ate but that has been all we have seen. Tonight we tried the IC Sandwich again but no luck. I guess he will tell us when he wants to eat. As I have said a hundred times, Cooper has done everything his own way and on his own terms since the day he was born. I do not know why we should think this would be any different.

Backing up a little bit, we saw Dr. Kelley on Wednesday and Cooper was up to 15lbs 13oz. He was pleased with Cooper's growth and has given us permission to leave the feeding tube out for up to 6 hours if Cooper pulls it out. That's right, now I want Cooper to pull the tube out and of course he has yet to do so. Dr. Kelley is in hopes that this will maybe give him time to get hungry and be more interested in eating. We cannot daily pull the tube and put it back in because it would cause too much irritation to Cooper's throat and sinus area. He also said that we have not taken extreme measures with Cooper yet. There are still things to try before we consider the G tube which is the tube that is surgically implanted in Cooper's stomach. Dr. Kelley has given us to Cooper's first birthday. At that point if he is still showing no interest we will probably be forced into the G Tube but I am hopeful it will not come to that. Wednesday night Molly from Tiny K came over. We reviewed Cooper's eating and were encouraged to continue trying to stimulate him with really sweet, sour and salty things. You do not even want to know everything we have presented to this poor kid. There are no limits, anything goes :) i.e. lemon juice, olive juice, grape jelly, orange marmalade, ketchup, ranch dressing, etc. She also reminded us that we can't forget about other things when we are focusing so much on his eating. She gave us exercises to encourage Cooper to crawl. He is standing up to things now and who knows, he may skip crawling all together! We also found out that Wednesday night was Molly's 2nd wedding anniversary and there she was with us instead of her husband and you would have never known she had anywhere else to be. This just shows the type of person she is and we appreciate it so much. This has been my general impression of the Tiny K program. Staci, the nutritionist that has also been working with us, has been great about emails and calls to follow up on Cooper. They are all so very supportive.

Now on to our "easy" child. Raelynn ran a low grade fever earlier this week for a couple days but nothing seemed to come of it. Then tonight we find her covered in a very odd looking "rash". They almost looked like welts. I covered her in Benadryl and we will see what we have by morning but may be visiting Dr. Kelley yet again. I am sure that get more than tired of seeing us but I cannot tell you how thankful I am to have them. The funny thing is that when we go I look forward to seeing Jill, Dr. Kelley's nurse, like you look forward to seeing a friend. It is always good to hear how her kids are and just to say hi. Obviously, we are there way too often :)!

My friend Amy also shared an amazing story with me this week. I am literally going to paste her email here to share, but basically the Kansas City Star followed a man who gave blood and followed that blood to the recipient at Children's Mercy. It is an awesome story and just goes to show what a few minutes of your time can do. It was also neat that the doctors and procedures and things in the article were all too familiar to us. If you have time, read this article in the KC Star. It will for sure touch you.

Hi there,
So last night the Royals game was on TV, each game they award the "Honorary Buck O'Neil Seat" to someone in the community who has stepped up to help out others. Last night, I hear the announcer say the person sitting in the seat was Jim Schumm. My mother went to high school with a guy who had the exact same name, so I actually looked up and paid attention to the game and sure enough - it was Jim and his wife Nancy (who is a dear friend of my mom's from high school). The reason he had been given the honor of the seat was because he had saved an infant's life - or so the announcer said. So I call my mom to tell her about it. Evidently my dad, who works very hard 8 - 12 hours a day and hardly has any free time ;), googles Jim's name and finds this article in the KC Star. I thought you may be interested in the article because of your recent blog posting regarding blood donations and because your experience seems very similar to this family's...... Sounds like she may have been on ECMO too......
Sorry for the lengthy story, but I thought I had to explain how we ended up where we did :)
Talk to you later,
Amy

http://www.kansascity.com/starmagazine/story/485287.html

I also have some exciting updates on Cooper's Cause events but I am tired and I am sure you are tired of reading by now anyway so we will save that for tomorrow. Thanks for staying with us on our journey. Sharing with all of you is making this all so much easier!

COOPER EATS......

I have so much to update but I just cannot wait another second to tell everyone. Monday night we handed Cooper a Dum Dum Sucker and he went to town. Of course Raelynn could not understand why Cooper got a sucker for bedtime snack and she had to eat apple sauce but it was all worth it because Cooper finally put something in his mouth without gagging!

Then the real excitement came last night when Raelynn and Cooper shared an ice cream sandwich. Don't ask me what happened but Cooper just opened his mouth when Raelynn put it towards him. I encouraged her to go right ahead. She stuck it in his mouth and he bit some off. He gummed it, swallowed it, then reached out for more. He took several bites just happy as could be. I was so excited I about died! I think Raelynn was just as excited. I started calling everyone! The littliest things excite us so much!!! Anyway, I will catch you all up on everything else later today but just had to get the good news out there. We will see what happens today!

INTRODUCING JOSEY COOPER....

We welcome the newest addition to our extended family, Josey Cooper. This is Karli's new puppy. He looks so cute I can't wait to meet him. I cannot believe Mom and Dad finally gave in and let her get a dog. Karli played the whole "Steph is going to college in 2 weeks and I am going to be so lonely" card. It worked like a charm. Honestly I think my Mom and Dad wanted a dog too. It has been a long time since there was a dog in that house. Cassidy found her. One of her cousins was giving them away. Cassidy tried to get one for herself but neither Jeff or Sherri allowed that. She called me on Saturday telling me Poho needed a friend. Maybe so but I need my sanity so I declined. Then she called Karli.....it was an easy sell. Now Cassidy gets to see her and help take care of her so she was very excited. When Karli first called to tell me they were naming her Joe, they thought she was a boy. Then she found out it was a girl and were going to name her JoAnna. What kind of dog's name is that!!! I guess I have little room to talk considering our dog's name is Poho!!! Anyway, I am pleased to say they finally decided on Josey and the name seems to suit her well. Welcome to the family Josey!!!

COOPER'S HEART UPDATE....

We saw Dr. Kaine, Coop's Cardiologist on Friday. He was very pleased with the way Cooper looked and acted. He even said it was very gratifying to have a patient like Cooper. He adjusted his meds just slightly but again decreasing the amount he needed. That was the good stuff, now for the not so good stuff. They did an ECHO, the hole in Cooper's heart is not getting smaller. Therefore, they will have to go back in for yet another open heart surgery to repair this. They say this surgery is very straight forward and much simplier than what we have just gone through. He also said that since Coop is doing so well even with the hole, they will postpone the surgery as long as possible. He thinks Cooper is strong enough to make it through the upcoming flu season and is thinking it would be around this time next year. This will not be the last of Cooper's surgeries but it will once again depend on exactly how they choose to fix this hole (VSD) as to how long before the next. I am very sad that he will have to go through so much more but honestly I think Terry and I both knew this was coming. Cooper will be much bigger by his next surgery and just in general his body should better withstand it. I know however, the day we walk in that hospital and hand him over to the nurse and once again walk down that hall to the Same Day Surgery Waiting Room it will take everything I have inside to not completely loose it. Things are different now. We always knew his procedures were complicated and there were always the possibilty that things would not go as planned, but now we know first hand how wrong things can go. And though Cooper made it through, we watched the worst happen to other families and came way to close ourselves. I really don't know how I am going to prepare myself. There is also the other factor, I am so in love with him now. In the very beginning I distanced myself as much as possible while still loving him and being a good Mommy. As he got older that became harder to do. Now, it is impossible. He has a personality, a smile that would make anyone melt, beautiful blue eyes, adorable toes and these precious ears that still stick out. I love him and now, really, nothing can happen to him. "He will be fine, I will be fine, We will all be just fine but I will make every second of everyday count", this is what I will say to myself every morning when I wake up. There will probably never be a time that there won't be a surgery or procedure "coming up" whether it be a year or 5 years away for Cooper. I will not live daily fearing the outcome but I will remind myself that there is nothing in this world as important as my two kids and will always live for them.

Cooper is making some progress. He now puts a bottle nipple in his mouth....to chew on and he does play in his food. Today I was drinking water out of a glass while I was holding him. He was looking so curiously at my glass so I put it to his lips and tipped it up. He drank from my glass. He swallowed fine. No gagging. This is all so mental for him. I tried it a few more times and he took one more drink and then lost interest. Dr. Kaine did talk to us about a G tube which again is the tube the surgically place in his stomach. He said it is fine if we are not ready to give up yet but to remember it is sometimes a much easier way until they decide to eat. The only thing I hear is "surgery" and therefore I am not ready to throw in the towel. Dr. Kaine said though from a cardiac standpoint he has released Cooper for that procedure or simply to allow us to let him get hungry without fear of hurting his growth. For now we will just continue trying!