TODAY WAS THE BIG DAY.....

This morning when I woke up (3 am, thank you Cooper) I was so excited and anxious. Today was the day for the swallow test and even though I tried not to get my hopes up, maybe the end of the feeding tube. Cooper was not a big fan of the swallow test. He screamed and cried his way through the whole thing. As you can imagine, this made swallowing even more difficult. They did not see him swallow liquids but they did see him swallow nectar and apple sauce. They believe he is swallowing fine and this is great news. Because they did not actually see him swallow liquids though we will be putting a gel in his formula to give it more consistency. We will also repeat this swallow test in September or October whenever the earliest appointment is. This was all fairly encouraging considering Cooper's attitude towards it all. The disappointing part was after the test we attempted to give him a bottle. Cooper wanted to have nothing to do with it. Remember it has been almost 2 full months since he ate on his own and prior to that had only been eating on his own for about 2 months. Therefore, they assume it will take Cooper some time to learn to eat again. The frustrating part is that he ate the applesauce fine so of course I am more than ready to start giving him baby food. We meet with Dr. Kelley in the morning and am sure he will set out a plan. We arrived back home around 4:15pm and tried again to feed him by bottle, he had not ate since 10 am. He sucked maybe 5 ml. I attempted to give him his meds orally and this he did pretty well. Since he did not eat and does not seem to have an interest, the dreaded time had came. It was time to put the feeding tube back in. Afterward I felt so disappointed. Cooper had been without his tube for about 6 hours. His face is so cute and we never get to see it. I got to kiss all over his face today and it was so soft. He looked perfect, like a little boy again. So when I put the tube back in I could not help but feel so sad. I did not want to be disappointed but I am. I know this is so silly considering what all he has been through but for those 6 hours you couldn't tell anything was wrong with our sweet boy. Anyway, the tube is back in and things are now just a little more complicated. We will present a bottle to him every 3 hours for 20 to 30 minutes and then will tube feed him. His hour long feeds now became 1 1/2 long feeds leaving an 1 1/2 in between them to clean up and get ready for the next. At least that is the schedule for tonight and we will see what Dr. Kelley tells us tomorrow. I am happy that we get to attempt feeds again I just so hope that he will start to eat.

While at CMH we also visited our friends on the PICU. We had made them a big thank you poster and made some blankets to donate with the help of some friends. We were able to see a few of the nurses and some from Cooper's cardiac team. It was so good to see them. They loved the poster and we grabbing blankets already to put on their patients beds. It felt so great to give them something. It can never compare with what they gave us but I hope it brightened their day!!! We also visited Granton, a little miracle boy that we had met when we were there. I had met his Dad but never his Mom and today got the pleasure to do so. We left her with a tag blanket for Granton. I hope he likes his as much as Cooper does.

While posting this update Raelynn asked that I pretend I am Aunt Bonnie. She came over and asked if she could feed my horses, what their names were, if she could ride them etc. I love her imagination and it cracks me up how much she loves Aunt Bonnie and her horses! Cooper on the other hand just wanted to help me type so please forgive any typos, those are Cooper's :)

COOPER SITS ALONE......

What another busy weekend and lots of great things from Cooper!!! Friday Mom, Dad and Karli came up to help load Sherri's things up....it was moving weekend! Mom and Karli came up early Friday and they loaded her garage. Dad got in around 1 am Saturday morning and when he got up around 5am Cooper and I were pacing the floors as someone did not want to go back to sleep. My Dad took Cooper which was really sweet and he and Cooper paced for awhile. I fell asleep and when I woke there Dad and Cooper were on the couch fast asleep. It was great to see Dad with Cooper. So then Dad, Terry and I went over to Sherri's to finish loading things up. It really went very fast though she has so much stuff. We finished with that and then Karli came back to Lawrence with us to watch the kids while Terry and I went to a friend's daughter's wedding. So this itself always makes me laugh. Terry has a 7 month old and his friends kids are either getting married or having babies themselves. Anyway, there were several of his old friends there that he had not seen for years and some I had not met so it was a lot of fun. It was also really nice to just be out with Terry too. We don't get to do that anymore, ever, and I forgot that we really do enjoy our time together.

Today Mom, Karli, Cassidy and Chandler headed back to Scott City. It was weird saying good bye to Chandler and Cassidy. Sherri has a conference this week so won't be headed out until next weekend. So I will get to see her one more time before she leaves for good. The girls were so excited and Cassidy is already talking about getting a horse. Chandler has a few more reservations but is excited too. It is just going to be so different having them so far away.

Last week we started trying to get Cooper to sit by himself but for the most part he just fell over. Aunt Karli was playing with him on Saturday and what do you know but he sat all by himself for quite awhile. It was so exciting to see him sit there so strong. We make him sit now all the time, it is like a dog who learned a new trick.....poor little Cooper :). Also when everyone was leaving today Aunt Karli was giving Cooper kisses and then pretended that Coop would give her a kiss on her cheek. It was so cute because he did it. He put his little lips together and then opened his mouth as she pulled him away. It was great. We are so excited to see him doing new things and showing how strong he is getting. Tuesday is the swallow test and I am so nervous and excited. I know his vocal cord is no longer paralyzed but exactly what will happen at this test and after I do not know. I am so ready to get rid of this feeding tube and I will be so disappointed if that does not happen in the near future. However, I see Coop making so much progress, a little feeding tube will not get us down :) !!

Raelynn has been especially ornery this weekend and I can only hope that will not last. I do feel bad though because we look so forward to our Saturday and Sundays together and this weekend we did not have that so I think she was just punishing me. She starts swimming lessons tomorrow night again and absolutely loves them. I am excited to see how well she is swimming now. She is just growing up so fast. She is very excited to see Claudine, her swimming instructor, again. She just loves her. We try to take lessons about every 6 months or so and it really seems to be working well.

I am also very excited for Tuesday because we have gathered some gifts to take to CMH. I bought this really cute material for little blankets for the patients on the NICU. Some of Mom's friends, Marilyn and Pat, sew the blankets and embroidered on them "Donated by Cooper Keefer". They look so great and I cannot thank them enough. Along with these blankets I have blankets that my friend Amy's Mom made and they too are awesome. So I have a total of about 20 blankets to take and I know the nurses will be so excited. Then Terry, Raelynn, Cooper and I made this big poster that has pictures of Cooper and many of his nurses on it with a big Thank You. Then Terry, Raelynn and I wrote our own personal thank you's on it. When I asked Raelynn what she would like to tell the nurses that took care of Cooper she said, "Thank you for taking care of my baby brother". So that is just what she wrote. It was a fun project for us all and turned out great. We look forward to Tuesday!

KIDS, SCRAPBOOKING AND BEGINNING A FOUNDATION.....GENERALLY KEEPING BUSY!

Things have been a little hectic around here, I think that is just how life will be from now to forever. It seems like now that we are in a routine and things are returning to "normal" we are all the sudden even busier. I have been working like mad to catch up on Cooper and Raelynn's scrapbooks. This is a task I absolutely despise but know the kids will appreciate them so much as they get older. Raelynn already looks at hers all the time. Now that Sherri is moving, I won't be able to call on her to make them look good. I am on my own now. After working all week on them and deciding I have no patience or artistic ability I headed to Hobby Lobby today. I was pleasantly surprised to find that they make books of already made pages. You basically slap the picture on them, journal and you are done! This is my kind of scrapbooking. So I spent a ridiculous amount of money and called Sherri to let her know it was all her fault! Also while on the subject of Sherri leaving, Terry gave me his tentative football schedule. He still refs high school games and each year Sherri and I find a game that we all go to close to either Bonner or here. Well this year there are 2 games in Bonner and 1 here in Lawrence and none of it matters because she won't be here to go with. As I entered the games into my calendar I felt for the first time how lonely it is really going to be without her here. I completely take for granted the fact that she has been just minutes away from me every since I left home. I have watched Cassidy and Chandler grow up. I have been to school functions and sporting events year after year and now I will be lucky to see any of these. This morning Raelynn asked if she could go to Aunt Sherri's today which she does often. As always I told her no, not today but in my mind I wondered how long it would take after Sherri moved that she would forget about staying at Aunt Sherri's and stop asking. I don't want her to stop asking or forget. I don't know which I hate more, the fact that I won't have Sherri minutes away or the fact that the kids won't. I know for them, this move is great and I am truly very happy that she is going, but for us.......it sucks!

Raelynn and Cooper are doing great. Cooper is completely weaned off of Avidan and will be off Methadone by the 12th. Besides constant issues with the feeding tube being pulled out, clogged up or just a general irritation, Cooper seems to be doing very well. Raelynn has introduced him to Popsicles and suckers and now thinks Cooper needs one or both every night. Cooper agrees and I have a hard time saying no because it is so cute to watch his face as he eats them. I have met with Tiny K, a federal program that offers assistance in monitoring the development of infants from newborn to 3 years of age. I had decided to contact them prior to surgery and now with the risks of ECMO I am certainly glad I did. They will basically be by our side to help make sure Cooper is developing normally and give us exercises to improve areas that he may not be. They have 18 different types of therapist on staff so they are able to provide specialized assistance in almost any area. I am really looking forward to working with them.

We are also working towards developing a foundation to assist other families who find themselves in a situation like ours. Our friends and family have been so generous to set up various fund raising activities to help with the expenses we are incurring with Cooper's condition, we could not help but take your generosity and run with it. There is a website being developed currently that should be complete very soon. I have contacted Children's Mercy to see how we can get something set up so that after we have taken care of our financial responsibilities we can continue these fund raising events annually and donate the money to other families in need. Due to HIPPA laws and such this is not an easy task, however they are helping me as much as possible and providing me with other sources needed to make this happen. I have a feeling that I have just taken on another part time job but it is so worth it and honestly I am enjoying the challenge!

Sabo Family: You have all been so supportive of me and my family and your prayers have meant the world to us. Now, please know that you are in our prayers. I know this is a difficult time in so many ways but remember each of you have the other to look to for strength and support. Your love will get you all through the unknown.

RUNNING IS MY STRAWBERRY WINE.....

HAPPY 4TH OF JULY!!!

Friday morning I got up to go running as usual. My runs have not been very good lately. I was really starting to get bothered by it. My legs just feel so heavy and I just keep thinking, how much further, but I keep getting up and running anyway. I have been trying to decide why it is so hard and I had just decided I was tired. We average about 3 to 4 hours of sleep a night with only about 2 of those consecutive so it was natural to assume. I was headed out there door on Friday when I saw Karli's Ipod laying on the counter. I grabbed it thinking it would be fun to listen to some different music. I thought I had made a mistake as I was skipping through the horrible rap music and then "Strawberry Wine" came on. What a great song! I started thinking about how simple things were when I was 17 and then I started thinking that Steph is 18. Things seem so complicated at that age but yet now I know that is some of the simplest time. Everything is so exciting and you're discovering who you are and what you want to do. You make crazy mistakes and no one seems to care because you are still a kid but yet you are old enough that you are no longer really answering to anyone. It was all so much fun. I hope Steph knows these are great years. She will experience so many things for the first time and will be so focused on "her". Things are simple, you do for you. Then I started thinking how much I loved that time in my life but how now I am so much happier. Isn't that odd, the time of my life that I remember having so much fun yet I think I am happier now than I ever could have been then. Things are so busy and demanding and there is so much responsibility now, how can this be the happiest time of my life? Raelynn and Cooper! My focus has changed from me to them and it is fantastic. I always talk about the kids and never mention Terry. I just think it is understood how much I love him. He is who made them possible. Anyway, before I knew it I had ran 4 miles and didn't even realize I was running. Finally I had went to that place again. The place you think about nothing but get all your answers to everything. It felt really good. I think there has just been so many things that have been on my mind that I could not just go run without thinking about all that there was to do when I got back and worrying that if I wasn't back by 6am Terry would over sleep and Cooper wouldn't get fed or remembering something I hadn't yet added to my "to do" list. It just never seemed to stop until that song came on. Needless to say, I downloaded on my own Ipod and hope it will take me to "that place" again when I run.

The 4th was a lot of fun. We spent the day celebrating my nieces birthday and then headed to Fort Leavenworth to watch their fireworks display. It is always a wonderful display! We take food and drinks and blankets and just spend the evening eating way too much and relaxing. I know the fireworks display was as good as always but honestly I barely watched them myself. In the years past Raelynn has been terrified of the fireworks. She always tells us it scares her ears. So this year I got ear plugs for her and Cooper. It worked wonderfully. Raelynn lay there just watching them, and talking a million miles a minute about what she saw. She even removed her ear plugs towards the end. I loved watching her. It was so exciting for her and her little eyes just glowed. The only time I took my eyes off her was when I was looking at Cooper. He hay in my arms mesmerized by the awesome lights as well. He eventually faded off to sleep but the two of them were just so beautiful there under the fireworks being so happy and innocent. It was the best fireworks display I had ever been to and I honestly could not tell you about a single firework I saw. Earlier in the evening Raelynn had held sparklers as well. She was so cute! She was a little scared and that just made it more exciting for her. It was truly a wonderful 4th of July!

So today we recovered from a late night. My Mom, Karli and Sherri are over at Sherri's packing things up for her big move. Next weekend will be her official moving weekend. I am very happy for her and she and the girls are very excited. I am sure I will have much more about this next weekend but I am just not ready for all of that yet.


Last Thursday, Aunt Bonnie and Aunt Karli tood Tristen, Dillon, Raelynn and Cooper to the Topeka Zoo. I am sure Bonnie had a temporary lapse in judgement when she decided to do this but according to Raelynn and Karli, they had a great time. I have not yet spoke to Bonnie and can't wait to hear her side of it :) but Karli and Raelynn couldn't stop talking about it. I wish I could have gone with them but am so glad they had a great afternoon!

RAELYNN IS OFFICIALLY 3 AND COOPER IS BIG!!!

Yesterday was Raelynn's 3rd Birthday and she had a great day. I wasn't able to spend the whole day with her which made us both sad but the time I did get with her we made very special. She got to open a little present before we went off to work and then she, Cooper and Karli spent the day at Aunt Sherri's running through her new Mickey Mouse sprinkler which she loved. Sherri brought them back to Lawrence so they were here when I got off work. We went to McDonald's for dinner, YUCK! She loved it though. She played in the germ infested play area and had a blast until she got lost up in the tubes and that ended her desire to play at McDonald's, YEAH! We then headed to Sheridan's for ice cream! After that we headed home to open the rest of her presents and get her very special present from Daddy. After presents she got birthday cake that Aunt Bonnie had brought her. So yes, my daughter had more "junk" in a 4 hour period than she had probably had in her whole 3 years of life and she loved it. I have attached the video of her Daddy's very fun present.

So needless to say, she had a wonderful birthday. This morning she asked if it could be her birthday again today!!!!

Today we headed to CMH to see Cooper's cardiologist, Dr. Kaine. I was very eager for this appointment because I had a list of questions and concerns a mile long. Dr. Kaine was very pleased with the way Cooper looked. He weighed in at 13lbs 12oz and 26" long! We were able to get rid of the Ibuprofen completely and cut his Captopril almost in half to 5ml. This was fabulous! We also found out that by the time we are done weaning him off the meds he does not need we will be left with only 4 that we will continue giving Cooper for an indefinite length of time. 4 is a long ways from the 13 we started with so I was thrilled. Dr. Kaine also said that we are through the worst of the withdraw symptoms which after the past 3 days I was very happy to hear. Cooper's vomiting is expected to continue until he gets rid of the feeding tube probably because it is such an irritation. Dr. Kaine was pleased to hear how Cooper's voice was coming along and was hopeful that our swallow test on the 15th would allow us to start orally feeding him again but did not want us to try until then. We had also been very concerned with Cooper's extreme sweating and rapid breathing. Dr. Kaine was not concerned with either. Cooper is going to sweat because he has to work much harder than an average baby. Working hard in this weather he is bound to sweat. Sweating is not uncommon with cardiac babies. The rapid breathing is also not uncommon. As we have learned, the respiratory function is directly linked to the cardiac functions. Because Cooper's cardiac function is not perfect, neither will his respiratory function be. There is nothing to worry about, this is just how Coop will be. This will all improve or go more towards the normal side as he gets older. This was all fantastic news and made Terry and I both feel much better. Dr. Kaine did remind us though that things are not perfect. Cooper does still have very small pulmonary arteries and the VSD. These will have to be addressed with time and he anticipates us going in for a cardiac catheter by the end of the year.

Even with the knowledge of further procedures, I could not have been happy with our appointment. Dr. Kaine is wonderful and took a great amount of time with us today which we appreciated!