ARE WE MAKING PROGRESS....

Nothing too exciting finished out our week and that is good. I was exhausted. Terry started reffing football Friday night. I am glad he does it for him but it was a little rough around here. Cooper seems to be getting very spoiled about being held and it is impossible to hold him the entire evening while still getting dinner, bathing Raelynn and putting her to bed. Needless to say there was a lot of crying Friday night, from us all. It will get better I am sure. I just usually hand Cooper off to Terry why I get Raelynn bathed and to bed and it is so much easier that way.

Steph and Cody were in town again and stopped by today for lunch. Raelynn loves Cody and it is so cute to watch him with her. He is very good with both the kids. I am really enjoying having Steph so close to see her so often. I had planned to clean after they left but started doing thank you's for those who helped with the Henry T's fundraiser. They did such a great job and I wanted everyone to know how appreciative we are. I started them about 2pm today and just finished. There were a lot of wonderful people involved!!!!!

Today Cooper, although very winy, decided he needed to drink water with ice out of my glass. He drank it like he had never had water before at three different times. He also drank a yogurt drink, ate some Won Tons and a fortune cookie. I don't know what got into him but it all had to be on his own time. I tried to give him a drink at one point and he batted at it like he always does now. Not 20 minutes later he was grabbing for my glass and took several drinks. If only I could figure him out. I just hope we are getting closer!!!

I have added a link over to the right. This is Raelynn's Preschool Class's Website. Her teacher says it is a work in progress but it is suppose to be updated throughout the year and even pictures posted. Isn't that sooooo cute!!!

COOP'S TROOPS AT HENRY T'S, A HUGE SUCCESS...

I cannot begin to tell you how wonderful the turn out was for the Cooper's Cause Fundraiser at Henry T's. The night began with a limo ride from our house to T's. That started a little shaky because she was 45 minutes late and you can imagine how irritated I was getting :). That was soon forgotten though when we arrived. The place was packed! There were people greeting us and wishing us well before we even walked in. Our little Cooper was a celebrity!!! Terry with Cooper in hand and I spent the whole evening greeting the amazing people who took time out of their busy schedules to help our cause. It was so humbling. I smiled the whole night, not because it was the polite thing to do but because I couldn't help not to. People were so generous and thoughtful. It wasn't even the funds we collected that astonished us the most but rather the kind words and heartwarming stories we heard. People as sooooo good! There were so many people that we did not even know that went out of their way to stop in and support us. I truly am amazed and this is an experience I will never forget. I have heard that this is the biggest fundraiser T's has ever had and that makes me feel so good. Terry and I keep thinking, what if we are able to help another family even this year???? I cannot wait to make another family feel as special as we do. We count our blessings nightly not only for our two beautiful children but for our wonderful friends and family. Cooper made quite a showing himself pulling his feeding tube right there in the middle of everything. We just laughed!!!

Steph and Cody came up for the evening as well. It is really great having Steph so close. It was pretty funny because Steph kept being mistaken for me. There was a point she gave up trying to tell people she wasn't me and just went along with it. Especially when it came to the benefits of them thinking she was over 21 :) Anyway, it was a really good time and great she and Cody could be there.

So this morning, after not getting to bed til around midnight, Raelynn was a little groggy. She was a real trooper though and got herself up and dressed. I woke her up pretty late so I was a little rushed leaving. It is her job to feed Poho so as I was leaving I told her she needed to feed Poho. She looked at me and said, "Mom, look at the clock, we are running late again! We do not have time for that now!" The girl is hilarious and now she is starting to know she is funny because her little comments are always followed by a sweet little smile. After school we went for her annual well check. She is now 34lbs and almost 38 inches. The funny thing of this all is that remembering she was born at a little over 4lbs, she is now in the 59% for height and 76% for weight. I told her she may be eating too many cookies!!! As we were leaving there was a lady jogging by. Raelynn asked me if she was running for her kids. I smiled and said yes she probably was. She replied, "She is a good Mom." Raelynn always asks me why I run in the mornings and I tell her so I can stay healthy so I can take care of and play with her and Cooper. It was cute that she really understands my words.

Tonight Terry got home after we had all eaten. I was helping Raelynn finish her shower. Terry had filled a plate and was eating with Cooper on his lap. The next thing I know Terry hollers for us to come here. There Coop was sitting on Terry's lap with Terry's fork eating the gravy off of his chicken fried steak. He ate 4 or 5 bites all on his own putting the fork right in his mouth and loved it!!! A little later on I gave him a piece of licorice and he put it right in his mouth and started gumming it like crazy. Maybe, just maybe, we are starting to get somewhere with the whole eating thing.

SO MUCH EXCITEMENT....

I have so much to say today I am sure I will not be able to type fast enough!!!

Friday was a great day! It started by dropping Raelynn off for her first day of preschool. It was so cute. She was a little apprehensive at first but as soon as she realized there was play-do she was good to go. She was definitely the cutest kid there, hahaha! She is just growing up so fast. From there I headed to Manhattan to help move Steph in. What a day! It brought back so many memories. I think Steph was a little nervous but I know she will do great there. She would do great anywhere. She is one of those people who can do anything and get along with anyone. I am so proud of her. I talked to her tonight and the first day of classes went pretty well except for her very advanced Spanish class. The entire class they speak Spanish. Her comment was "I think they gave an assignment but I am not sure." Not a real good thing but I know she will work it out. Anyway, I think she is settling in and I know I am happy to have her so close.

While I was in Manhattan, with no cell service in hick town, Cooper got a fever. Of course, Saint Lisa took care of him and got him some Motrin and gave him lots of love. We were up all night Friday and Monday morning I took him to the doctor sure he had another ear infection. He did not. You would think I would be happy about this, but with Cooper, not knowing what is wrong is far worse for me. Dr. Kelley assured me this was a good thing and he just had a little bug. By this morning his fever was gone and he was doing much better. Now Raelynn has the sniffles so I am sure it will work it's way around the whole family. Mom was here Friday night and went home Sunday. She spoils us so much when she is here. It is no wonder I always hate to see her go!

Tonight Rick and Shannon brought over one of Chandler's bikes she had outgrown. It was so cute and Raelynn started riding it right away. She had just told me she needed a bigger bike and I guess she was right. It was so cute so enjoy her first "big girl" bike ride.

I cannot even begin to tell you how excited I am for tomorrow night. It is Coop's Troops fundraiser at Henry T's. I got so many wonderful emails and comments after the news report and article today. If you didn't catch it, copy and past this to your address bar. It turned out pretty good.
http://www2.ljworld.com/news/2008/aug/25/infants_illness_spawns_charity/
We actually got an email from another local family that was in the NICU when we were there right after Coop was born. We had thought often about them and I was thrilled to hear from them. There were others too. I just cannot begin to tell you how "big" this all is. It is so worth all the work. I get chills just thinking about it. Tomorrow night will be a very humbling experience I am sure and one I will never forget! Who would have known these two could bring so much good to the world and to us!

WE SURVIVED MEDIA WEEK :)......

Well the interviews are over for the week. The photographer that came Wednesday night for the LJWorld was so nice. He was great with the kids and just flashed away as we went about our nightly routine. He is actually sending us all the pictures too so I am very excited about that. This morning was the live interview with the Lazer and I think it went pretty well. I was so nervous but once we got started I relaxed a little. The DJ's were great too and asked the perfect questions. Isaac got us in contact with KSNTV out of Topeka. They emailed me late this afternoon and we are trying to set something up with them. The media attention has really surprised me but I think it is wonderful to be able to get our story out there. Setting up the foundation is getting a little frustrating but I refuse to give up on this and it will happen I am just shocked at all the hoops you have to jump through and the expense associated with trying to give money to other people. I am enjoying the challenge though I must admit. I feel like I have been incredibly busy and honestly I think I do better when I am. Also today I received an email from a Mom of a little boy who has cardiac issues very similar to Cooper's. She lives right here in Lawrence and I was quite touched by her email. She provided me with her phone number and said if I ever wanted to talk to call her and she and her son were going to be at the 5K/Fun Run to help support us. I was really touched by her and plan to call her this weekend. I just keep saying how touched I am by things that have came about since Cooper's birth but I am truly convinced that setting aside the suffering Cooper has had to endure, this has probably been one of the best things in a weird sort of way that has ever happened to me. I am a better person and a better Mom because of our situation, not that I would have chose this path if it was up to me, but given the situation I think we are very blessed for what has come out of it.

So Raelynn will head to her first day of preschool tomorrow. I am sure to cry!!! She is just so grown up!!! I continue to be in awe with her. She gets frustrated now with the things she cannot do. She is very independent. I love to watch her learn how to handle her emotions and learn to solve her own problems. I think the hardest thing for me right now is not just jumping in and fixing everything for her. We talk through her emotions and try to find resolutions to her problems. I am trying to teach her to talk things out because neither Terry or I are talkers. We are much better at not talking then talking when it comes to our emotions so I want Raelynn to learn a better way. Tonight she had a meltdown as soon as we got home because she wanted a sucker and couldn't find them. She never bothered to ask me, just became angry when she could not get one for her and Cooper on her own. After she spent some time in her room "calming down" she says to me, " I got mad because I can't find the sucker". I asked why she didn't just ask me to help her find them. She said because if I asked you, you would know Cooper and I were eating suckers before dinner and then wouldn't let us. I cracked up, she was right! What a delima that left her in. Really I have no idea how any parent can get furious with their kids. If you take two seconds to think of the situation from their perspective, it is always humerus!

So tomorrow I am headed to Manhattan to help my little sis move into her dorm. I have no idea how my Mom can do it, I am almost ready to cry. I remember when Steph was 3. It was the year I was moving out and heading to K-State myself. I was in my room crying so hard and there walked in my oh so fat 3 year old sister, one of the reasons I was crying so hard and didn't want to leave. Now she is the one going off to college. I have to admit I am so happy she is moving closer to me. It will be good to have a sis close by again. I am looking forward to tomorrow so much for so many reasons. I missed Steph's graduation because of Cooper's surgery and so I feel like this will be something I can do to make up for that. I also am looking forward to a day off. It is just me, no work, no doctor appointments, no kids, just me, my Mom and my sis. It will be a lot of fun and I am sure bring back a lot of fun memories.

RAELYNN IS GOING TO PRESCHOOL.....

Well the first interview is over and I guess it went alright. Terry and I both started crying and Raelynn was a maniac. With today's technology and a lot of editing I am hoping it turns out good. The article will run in the Lawrence Journal World on Saturday or Sunday and the news clip will be on Sunday at the 10pm news. I am so nervous to see it. I thought of a million things I wish I had said and a few I wished I hadn't but we'll see.

After the interview we went to Parent's Night at Raelynn's Pre School. Raelynn and Cooper got to go play with Kelly, Brett and Kaden. The loved it and I loved Parent's Night! It was so great! Raelynn is going to real school now, I almost cried and Terry almost fell asleep!!! Just kidding, he loved it too. Her teachers, Ms. Hanf and Mrs. Strong are awesome and seem so excited to teach the kids. It is ridiculous how cute I think all of this is. Seriously, I would have never dreamed it, but I love being a Mom. I love all the organization of the teachers too. They have everything so spelled out and we can keep track of exactly what our kids are learning so we can practice at home. They have things all set up so we can also see at any time how Raelynn is progressing and what she needs to work on. I swear I am more excited than Raelynn!!! She will go to a pre school orientation on Thursday and then her first day is Friday. She is going to love it. We bought her this little pre school T-shirt that she has to wear on field trips. Yes she gets to go on field trips. Isn't that so cute! There was another Mom there that was just as silly about all this as I am, I liked her right away. :) Anyway, who would have ever imagined I would be excited for school, hahaha!

MEDIA WEEK.....

Ok, things have gotten crazy. Today I got a call from Channel 6 News and they want to do a story on Cooper.....tomorrow. What?!!!! Don't they know I am a planner and there is the house to clean, what the kids should wear, what Terry and I should wear, is the yard mowed?, has the dog had a bath this week?, are the toys picked up in Raelynn's pool outside? Then, I took a deep breath and remembered they are here to do a story on Cooper and our family not on how clean is Kristi's house!!! This helped a little :). So tomorrow they will be here at 5:45pm to do their story and then we are off to parent's night at Raelynn's school. Then Wednesday the Journal World will be here to do an article in the paper and Thursday morning I will be on the Lazer to do a little interview on the morning show. This is all very exciting and to think someone in a similar situation may see this and feel better knowing they are not the only ones going through this. Anyway, I cannot believe all of this but just hope I make Cooper proud in our presentation of his experience.



So as exciting as all of that is, Cooper has been even more exciting. Sunday afternoon Coop decided to talk! I haven't talked a lot about this but Cooper has not been very vocal. He had just started making sounds when we went into the hospital last time and since then he has talked a little but not much. Working with Tiny K Terry and I really realized how he was lacking in this area. They had given us some pointers and sound recognition to work on with him. Then Sunday afternoon he just seemed to open right up and start babbling. He talked all afternoon and then again today. It is so cute to hear his little voice and watch his facial expressions as he talks. Terry and I are convinced he is yelling at us at times but we just laugh. Tonight on our way home he was talking up a storm and I said, "What did you say Cooper" and Raelynn said, "Oh Mom he's just talking to me, blah blah blah!" I thought I was going to crack up because anytime Raelynn is babbling about something crazy I say blah blah blah! Tonight we tried to catch a little glimpse of his talking to share with you all. The picture quality is horrible because I had to hide to record him. Every time I tried to and he saw he would stop talking. If you can't hear it because of the music on the blog, scroll to the bottom and mute the music. Enjoy!!!

SO MUCH GOING ON, SO BUSY....

I cannot believe it has been almost a week since my last post. I feel like there are never enough hours in the day. Last week Cooper continued to throw up but it seemed to be getting so much worse. It was not more often but much more volume. Terry and I were getting a little concerned so I touched base with Dr. Kelley. He decided to drop Cooper's volume of feeds from 120ml to 90ml. It has made a huge difference!!! The night feeding however was increased to 480ml but given over 8 hours. Cooper still throws up on this one. He starts about 2am and continues until 5am or so. Therefore, sleeplessness, has taken on another form. Terry has started to get a little more sleep now which is really good. The other morning he caught himself putting OJ on his cereal and we knew things needed to change. However, I was getting spoiled with getting some sleep and now I am up with Coop from 2am to 4:30am when I leave for the gym. However, if this helps Cooper stop throwing up through the day, it is all worth it.

On Wednesday, we drove to Salina to pick up Karli. Lisa was taking Thursday and Friday off so Karli came down to watch the kids. I think she had a great time and I know we enjoyed having her. She had hoped Cooper would pull his feeding tube while she was here so she could love on him without it and she was confident she could get him to eat. On Thursday night her wish came true. About 3am he pulled his tube. She was very excited on Friday and although she did get him to eat a few things, she was disappointed she did not have him eating steak and potatoes by noon.

Friday night Sherri, Cassidy and Chandler drove in. Sherri had some things going on for Partylite and the kids were here to see their Dad. On Saturday we headed to Deanna Rose Farmstead, a little petting zoo type place in Overland Park. We got to take Cassidy and Chandler with us too and met Jill and Taylor and one of their friends also. It was a fun day! Raelynn was so excited to see her cousins and we were so thankful they got to spend a big part of the day with us. The zoo was great and they kids were able to feed and pet many of the farm animals. We had a little picnic lunch and then headed home. We dropped Cassidy and Chandler off at Jeff's and headed home from there. They all left about 2pm today. It was really great seeing them all.

This week is going to be just as crazy as last but I promise to post more often. Raelynn will start preschool at the end of this week and we have interviews for Cooper's Cause with the Lazer and the LJWorld. I am so excited for all the upcoming events!

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!