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!