NEW IDEAS SEEM TO BE WORKING.....

Raelynn is such a help she now gives Coop his meds!!!
Look at that smile.....she loves swimming lessons!

We met with the team from Tiny K last nigh. We focused the night entirely on Cooper's eating issues. After much discussion about what is going on with him they came up with a new plan. Staci, one of the team members, drew up a new feeding schedule and gave us a different plan on presenting foods to Coop. Basically, with Cooper's very sensitive gag reflex and the length of time it has been since he ate we are going to start at the beginning. The suggested instead of offering Coop actual foods we would present him with very strong flavors that were not an actual substance he had to manage in his mouth but rather something we could smear on our fingers and then rub on his lips and in his mouth. These flavors had to grab his attention. So last night Cooper got introduced to the juice in the jar of Marciano cherries. It worked like a charm. Once I got some and his lips and a little in his mouth his saliva really built up in his mouth and by gosh he swallowed his saliva and the little tiny bit of juice without gagging. It was amazing. Today Lisa introduced him to coffee, tomato juice and maple syrup. She saved the lemon juice for tomorrow. The point is it seems to be working. We were also told to continue having solids present at each feeding but to let him just put his fingers in it and hope that some of it reaches his mouth. So in addition to the crazy things we are giving him we are also pouring applesauce, peaches, pears, etc on his tray and letting him help himself. Let me assure you this has been very difficult for me. The mess an 8 month old can make with a little applesauce is unbelievable. They also adjusted his feedings and this is where it gets good. The dropped the midnight and 3am feedings. It is a long and complicated explanation of how we are adjusting his tube feeds so I will not bore you with that. Terry is thrilled though that the night feedings are gone. The adjustments they made in his feedings are designed to help him actually have feelings of hunger at times while still getting enough calories in him. They other great thing about Tiny K is that they clear everything with Dr. Kelley. We were not told to change anything after last nights meeting until we heard back from them and Dr. Kelley had signed off on it. I received a call this morning that Dr. Kelley was ok with everything and this all made me feel so much better. We have done nothing but what Dr. Kelley has said in the care of our kids since Raelynn was born. So all in all I am very excited and just hope that Cooper continues to make progress.







Tonight we headed out to the Fair. It was so much fun for Raelynn and Cooper seemed to enjoy the outdoors too. Terry caught up with some old friends he had not seen, but it made for a long night.

Raelynn gets ready to ride the roller coaster!

While Cooper and Daddy wait patiently!

How could we not ride the ponies??!!!

Tomorrow we meet with Dr. Kaine. We will have an EKG and I believe another echo to see how the VSD is doing. I hope that they will start to wean the last of Cooper's meds that he does not technically need for his heart. Cooper is looking so good and I am excited for Dr. Kaine to see him. Today I scheduled Cooper's MRI which is standard protocol for kids on ECMO. It had been set up for the end of this month but because of some work conflicts I had to reschedule it. They did not have another appointment available until October. I was thrilled because this will be an overnight stay and Cooper will be put under again. They tell me it is very routine and nothing to worry about but I have heard that before. I am terrified to take him in even for this minor procedure but it is something they feel needs done and I will not let my fears interfere with his care but I can tell you I am already a nervous wreck but happy I was able to put it off for another few months.

LOOKING BACK.....

We received a call last night from a friend who had received a call from the Lawrence Blood Bank stating they were running low on blood. My intention was to make a short post asking anyone who can to please go in and donate this week. Once I logged onto the blog though I decided to go back to the blog when I was in the hospital asking people to donate. I briefly read through some of my blogs and just started to cry. Those feelings just rushed back to me. I was just talking with a friend this morning who just found out about Cooper's situation and I stood there with a smile on my face and told him he was doing well. When I think back to the time in the hospital I sometimes wondered if I would ever get to this point. So much has happened since then most importantly Cooper's wonderful recovery but much more too. I have received so many contacts from family and friends that I had not talked to for so long. Cooper's Cause has been created and that alone has been amazing. Our family has grown in ways I would have never imagined. I had someone ask the other day how this has effected Terry and I. I looked at them blankly, I had not thought about that. Terry and I have not been a priority for so long but when I think about us I know we are great. Terry picks up in the areas I lack and vice versa. We each have our down times but they never seem to be at the same time. We have had to learn how to manage our time so efficiently and constantly made sure we are providing both Raelynn and Cooper the attention they need and deserve. It has made us better parents. It has made us better people. When you see some much good being done for you, it is impossible to not become a better person. We are blessed, fortunate, lucky......whatever you want to call it. It is all very real and now seeing Cooper's little smile daily and watching his personality develop and seeing Raelynn and Coop interact, I cannot imagine what our world would be like without the experiences the past 8 months has brought us. Now will I need to be reminded of all this at our next hospital stay? Of course I will! :)

Now back to the actual purpose of this post. Below is a reminder of how important it is to donate blood. This came directly out of a post I made back in May while in the hospital when a friend, Isaac, was kind enough to donate. Please if you can, donate!!!


"On 1 day using the ECMO machine Cooper used 6 units of blood. A person usually donates 1 unit of blood when they donate sometimes a little less. Cooper was on ECMO for 6 days. During surgery he is given probably twice that given on an average day on the ECMO. Cooper is still receiving blood daily but it is down to 1 to 2 units. Therefore, in the 8 days that we have been here Cooper has received somewhere around 45 to 50 units of blood. That is approximately 45 to 50 people donating blood!!!! And we are not done yet. As you can see, it is sooooo important. Isaac was also good enough to share the following link you can go to for locations to give blood. www.savealifenow.org/services/hours-locations.phpThank you Isaac for being so thoughtful!!! Thanks also to all of you who currently give and have given in the past. We thank you"

****Say a little prayer that tonight Molly from Tiny K will give us direction on Cooper's eating issues. I can hardly wait to meet with her.***

COOPER IS SMILING AGAIN.....

T0day Cooper started to smile again so I know he is feeling better which makes me feel better. He really did pretty well last night. I gave Terry the night off and took care of Cooper. Terry woke a couple times to check on us and then took him at 4:30am so I could go run. I was very grateful as it had been 3 days. Our morning went well and Dr. Kelley's office said there was no need to bring him in today so for a Monday, things started very well. About 10am Lisa called and Cooper was very fussy. I went and picked them both up and headed home for a few hours. Cooper just needed his Ibuprofen and after a little nap was good to go. I took Raelynn back to Lisa's and Coop headed to work with me. He was such a little angel. He spent 2 1/2 hours playing in his saucer and then took a nap. He was really no trouble at all and I was so relieved. He has done pretty well this evening also. I think the medicine is kicking in and hope he is feeling some relief. Molly from Tiny K comes on Wednesday and I can hardly wait. I want some advice on this eating issue. If the boy doesn't eat soon I am sure to loose my mind :)

Sherri called tonight. It was so good to hear from her. I had not talked to her since she moved and it was great to hear her voice. I miss her. She seems to be settling in even though things are very different back there. She makes me laugh listening to the stories of the house and her lack of social life because of the lack of people to be social with. I think she is doing ok though and I can't wait to visit! Cassidy and Chandler love it. They are already meeting friends and they have Grandma there, what more could they need.

I feel like my daughter is constantly giving me funnies to write and today was no different. Eventually we will get off the subject of God, but we have another great story. Last night Raelynn wanted me to read 101 Bible Stories, a book she never picks. I started at the beginning which was the story of Adam and Eve. She had a thousand questions and I just tried to relate it to things in her life so she could better understand. Then today I was feeding her lunch before I took her back to Lisa's. She was not eating and insisted she was done. I told her that if she was not going to eat lunch there would be absolutely no snacks until dinner. She said ok and I began to wipe her hands and clean up the dishes. It was obvious I was not pleased with her refusal to eat. She asked me if I was going to make her leave our house. I asked for what? She said because she would not eat her lunch. I said no why would I make you leave our house? She says, God made Adam and Eve leave the garden just because they ate a piece of fruit. With a smile I told her we would not make her leave the house......this time.

I cannot wait to see what tomorrow will bring.......

GOD'S LITTLE REMINDERS.....

Well we made it through yet another week. Thursday Raelynn went with Aunt Bonnie swimming and another day of VBS. She had so much fun. Raelynn has become quite fond of her outings with Aunt Bonnie and always has so much to tell us when she gets home. I guess Aunt Bonnie was brave enough to tell Raelynn that she like purple. After a little discussion they came to the agreement that she could "like" purple but could not "love" it because it was the Wildcats colors!!! I think Raelynn kept Aunt Bonnie on her toes :) .

Friday came along and truly I think Terry and I thought we were going to die. Cooper is not sleeping well and the 3 hours of sleep we were getting have become non existent. I felt so bad for Terry Friday morning I couldn't even bring myself to wake him at 4:30am so I could go run. Cooper was wide awake and fussy. I took him in for a weight check early Friday morning because he had been throwing up quite a bit. 15lbs 4oz....he was still gaining weight great! Too bad he was still not eating. I let Dr. Kelley know he was still not eating and still they told me to be patient. Patience isn't a strong trait for me anyway and with little sleep, patience is wearing thin. He did ok Friday during the day. Friday night I was helping with VBS at our church and Raelynn was having her VBS program at the church she was attending. There were plenty of people helping at mine so Kelly was sweet enough to let me go early so I could go with Cooper and Terry to see Raelynn's program. We walked in and they were already on stage singing. Raelynn saw us and started waving and saying "Hi Mommy" right in the middle of the program. You would think I would be embarrassed but I just smiled and waved back. It was so cute! We got home and settled in hoping for a better night with Cooper, but no luck. Day 2, no running for Mommy! Again, Cooper decides that being fussy and awake was better than sleep. He fell asleep about 5:15am and I fell asleep to.

Saturday we had a very busy day of running errands. While we were at Walmart Cooper decided to pull out his feeding tube, again! We have put in 3 or 4 tubes this past week. When I got home I called Terry to let him know. I can't put the tube in without him holding Cooper's hands and head. He wasn't able to come home for a little while so I told Cooper this was it. He seemed hungry so I gave him a bottle. He played and sucked a little but not too interested. I gave him peaches and pears which he actually ate some of but nothing close to what he would need. So our eating battle continues. Saturday night we went over to Brett and Kelly's for a get-together in their new house. The house is great and we had a lot of fun. Raelynn loves Brett, Kelly and Kaden so she is always eager to visit. Part way through the evening, Cooper seemed to be a little warm and had not been acting very energetic. We went home and gave him some Tylenol. Throughout the night his fever when from 101 to 103. By 7am I called the doctor and they advised to go to the ER to have his ears checked. So Cooper and I headed to the ER while Raelynn and Daddy stayed home. Raelynn was so scared and would not quit crying. These are the times we notice what effect our long stays at CMH has had on her. Coop and I got right in to the ER. We spent an hour updating them on Cooper's condition and assuring them that the low SAT level was nothing to be too alarmed by however it was lower than I would have like to seen at 74. It ends up the Coop has a double ear infection and we were not giving a large enough dosage of Tylenol to bring the fever down. We left the ER with Ibuprofen, Tylenol and Amoxicilion in hand. He is doing better as far as the fever goes but he is still very lethargic and fussy. We are looking forward to another fun filled night, hahaha! Terry and I joked toning that every time we say we do not know how much more we can take, God gives us a little reminder that we should be grateful for what we have and reminds us it could be worse.

Now back to Raelynn and her understanding of God. So tonight she asks me if God sleeps. I tell her I really don't know and she could ask Pastor Bill next Sunday. She said, "If we can talk to God, why don't we just ask him. God, do you sleep?" She hears no response from God and therefore looks at me and says "Yep I guess he does, he must be asleep now because he didn't hear me". Seriously, anyway who can give me pointers on how to address these questions without laughing hysterically, I am listening.

BUSY, BUSY BUSY....

Just a quick update on the week. I am helping with VBS at our church and Raelynn is attending VBS with Aunt Bonnie at her church since she is too young for ours. Terry has been busy playing Super Dad while I help with VBS. He picks the kids up and and has to do all the stuff I do every night. Sadly, I miss it all. Raelynn had such a wonderful time Tuesday night at VBS! It also lead to a very interesting conversation for Tuesday night. Raelynn asked me where God is. I replied he was in heaven. She said she could not see him. I told her we could not see him but we could feel him in our hearts. She paused before saying she did not feel him. I told her she would in time. Then she asked if he could hear us. I said he could always hear us. She asked why we only talked to him at night then. I said you can talk to God anytime you like. There was a long pause. Then in a very stern and abrupt voice Raelynn says, "God?!" I lost it, it was soooo funny! She looked at me said, "I still don't hear him, I don't think he hears me either." I tried to gather myself. I just gave her a kiss and said "I promise he hears you and you hear him too, you just don't know it yet". So today I was just waiting for a call from Lisa asking me why my daughter was walking around yelling for God but the call never came, thankfully I think.

Cooper is still not eating. He has little to nothing to do with the bottle and will allow us to put food in his mouth but does nothing with it when it gets there. He is throwing up a lot and I plan to take him in for a weight check before work to make sure we are not loosing ground. We are worried and frustrated but trying to be patient. I have decided to be patient until Monday and then I am calling Dr. Kelley for more instruction. If Cooper has not gained when I take him in for the weight check, the call with come much sooner.

We are so excited for the Henry T's fundraiser that is coming up. Our friends are working so hard I cannot believe it. Eric designed a logo and it has become the official logo for Cooper's Cause. Check it out to the right. I think it is very cute! I have an appointment with an attorney next Thursday to take the next step toward developing the foundation. I truly believe this is what we are suppose to do. It feels really good and there are so many people to thank for it, but when we help that first family, I think that will be all the thanks we need. I know how special and wonderful this has all felt to us, I just can't wait to do the same for someone else.

Well I guess that is all the further I am going to get tonight as Cooper just came down to tell me he pulled his feeding tube out....again! If only he would realize that if he would eat, we would leave it out!

A SAD MONDAY.....

Today started with my sister leaving. Really leaving.....moving 6 hours away and even though we don't see each other every day or even every week I always knew I could. Now I can't. I knew this would happen....I feel very sad and very alone. I don't know why, I really don't but it has been probably been 12 years or so since we have not lived close to each other. She got back from her conference last night and spent the night with us. She and her dog. I am not a big fan of the dog and last night I didn't even care. I was just happy she was here. This morning I tried so hard to just say good bye but I couldn't help but cry. When I think about it I really don't understand why I am so sad, I know I will see her but I guess she has always been my security blanket. She is like a second mother to me. When I didn't know what to do I called Sherri. Yes, I can still call her but just knowing that she can't just come over I or go over there makes it different. I will miss her girls too. I will miss them with Raelynn and Cooper. It all just makes me very sad. So this was the start to the day.

I got to work and after a few phone calls discovered that there is still a lot of time, work and money before we can actually say funds for Cooper's Cause are "tax deductible". This is a minor set back and we will continue to pursue this, there are just few more things we have to do. It will still happen and it wasn't "bad" news, just a day I didn't care to hear it. I will talk more of this later but again please note, until further notice, donations are not considered tax deductible quite yet.

Then there was Cooper. We are so frustrated with the whole eating process. This weekend I felt like we made some real progress. He actually allowed me to put food in his mouth and allowed me to put the bottle in his mouth. Now he didn't really do much with the food or the bottle but it was a start. Then today, he wouldn't do either for Lisa. I just want so badly for him to eat. It is hard for me to understand why he won't. I know he has had a tough time. I know he has only ate for himself about 1 1/2 months out of his whole life. I get it, but how do you teach someone to eat!!! In my line of work, you can not be discouraged by rejection, it is completely normal in any job that requires sales. I have learned to not take it personally. But when you baby rejects you feeding him time after time after time, it is very difficult to keep presenting it and not assume he will reject it. This weekend I was so excited on Saturday when we made some progress. I acted like a complete idiot with silly noises and dramatic facial expressions to make him think eating is fun, and it worked. But then today, nothing! I think I am just tired, really tired. The nights have been pretty rough since about Thursday and sometimes I just get too tired to remember the good things that are happening too. So we will move on to that.

I met our Primary Coach with Tiny K, Molly. She is fabulous. She is sweet and outgoing and we really like her. Today I met with her and set up our goals with Cooper. As you can imagine, eating was on top of my list. I think this program is going to be amazingly helpful for us. We will meet with them next Wednesday for our first session and I cannot wait. I hope they will be able to offer some guidance. I just want my sweet Cooper to be tube free! Tonight I had to pull the tube in order to put a new one in. Cooper sweats so much we are having a hard time keeping the tube taped to his face. I pulled it about 7:30pm and when we put it back in at 8:15pm I truly wanted to cry!

So as much as I am wining tonight, as I look at these pictures, I knew I am the luckiest Mom in the world and our current frustrations and my sadness is short lived and tomorrow is sure to be a better day!
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COOPER'S CAUSE

When I first was told at 4 months that our baby would be born with multiple heart defects I remember thinking why our son. There are no boys in the family and now this. Well I don't think like this anymore, I mean how could I. We have been given a wonderful gift. Cooper was given to us just as much as we were given to him. I have always believed that things happen for a reason and God has a plan for all us. Recently, it has came to light that Cooper was not given to us just to complete our family but to help other families as well. As I have mentioned before, we have been blessed by our family, friends and the community support. We cannot keep this much good to ourselves and therefore have been working towards helping others. With the help of so many people, we now have a website and email address designated just for Cooper's Cause. In addition, there are three events that will be occurring in the next 2 months which we will continue on an annual basis. Although our expenses are sure to continue with the future procedures Cooper will need, there is no doubt that there are other families that are in similar situations but may not have the amazing family and friends that we do. Therefore, we want to be their support! The work that you have all done we will continue. Please take time to visit our new website, www.CoopersCause.com and let me know what you think. I am truly excited and hope that you all know this has only been possible because of you!

***Cooper's Cause is now established with the IRS as a non-profit organization and all contributions are tax deductible***

SO ONCE AGAIN DR KELLEY SETS US ON THE RIGHT PATH....

Last night went ok. Cooper took about 15ml of milk from the bottle at 3am but that was it. I was anxious to see Dr. Kelley to figure out what we were going to do about Cooper's lack of interest in eating. Dr. Kelley began with, "Kristi, it has been 1 day". As always he had all the answers and I once again feel like we have direction. Basically Cooper needs to "want" to eat. Because we feed him through the NG tube a pretty significant amount, Cooper is never truly hungry. Therefore, we need him to become interested in the taste that we are giving him. The formula we are giving him currently is horrible tasting. Dr. Kelley asked if we had ever tasted it and of course I had not so tonight I did and right there in front of Cooper I spit it out in the sink. IT WAS NASTY!!! I gave it to Raelynn to taste and she agreed. Therefore, if by Saturday Cooper is still showing little interest, we will switch to a sweeter formula which we had used in the past. In addition, we will try sippy cups and baby food. Because we want to stimulate Coop's taste buds we are skipping cereal, skipping veggies and going straight to the good stuff....fruits. If baby food fruits don't cut it, we get to try applesauce and mashed up bananas just like we eat. If Cooper continues to show little interest in the formula, we will add chocolate or strawberry to it for flavoring. Now, this gives us a good laugh because I don't allow Raelynn to drink chocolate or strawberry milk. Therefore, you can only imagine what her reaction will be if she sees me mixing it for Cooper. That will be fun :) Anyway, it is all a process because although our goal is to get Cooper to eating enough to get rid of the NG tube , it is also most important that he continues to consume the needed amount of calories. Cooper will be burning more calories as he begins to eat on his own and therefore will require more calories as well. I cannot tell you how thankful I am to have Dr. Kelley to explain this all to us and give us step by step instructions on what to do. So our schedule now is this; 15 minutes before each feeding we present a bottle to Cooper. Whatever he consumes in that 15 minutes we deduct from the total volume we give him through the NG tube. We will also present baby food to him 3X per day. It is a little tricky as to when to present them because the feedings are so close together and they are still given over a full hour. However, I think we will be trying at about 7:30am, 1:30pm and 7:30pm. Tonight we gave him Cherries and Apples. He choke quite a bit but was very tired when I was trying to give it to him. It was the first time feeding him also so I am not discouraged by it. He took 20ml by mouth twice today, once for Lisa at noon and again for me around 6pm. I pray that this will continue to improve. Raelynn is very helpful in the feedings as well. Tonight she had me feed her some of Cooper's food so she could show him how to eat. Cooper was not impressed and neither was Raelynn with the flavor!

We met with 2 potential matches and one observer for our Tiny K support person tonight as well. You all know how I am, I wanted everything perfect and us sitting there waiting patiently when they arrrived. Instead we were in the middle of chaos. We had gotten home late because I had to go to the store to get baby food, banans and a new sippy cup for Cooper. I was rushing to try to feed him with the bottle, give him his meds, get his feed through the NG tube started, feed Raelynn, get everything put away, light a candle so it smelled all good, make sure there was nothing out of place and so on. Instead this is what happened. Cooper decides to take the bottle, yeah, but delays the start of the feed therefore just slowing everything down. Raelynn does not want to eat but instead wants to play dress up and is running around the house butt naked with a cape and high heels on. The phone rings.....some nut case talking about the price of gas. It is too high what else is there to say. Open the front door for the company that will be arriving and within minutes Raelynn puts hand prints all over it with her hands that are covered in girly lotion. Grab the windex and clean the glass. Light the candle so everything is smelling good but instead smell something melting.....the grocery sack which is still sitting on counter full of groceries. Put out the fire and put away the groceries. Terry is home and now helping me calm the chaos. Things are improving and then.....Cooper poops or should I say has a blow out!!! Terry changes him, washes him, redresses him. Raelynn now decides she is hungry and I am throughing Spaghetti O's in the microwave, sure to make a good impression with my nutritious dinner for my daughter and the door bell rings. The dog goes nuts, Raelynn rushes to the door and I take a deep breath............. They were wonderful and I am very excited to work with them. As I explained to them, we have the best medical doctors we could ever hope for so I am not worried about Cooper's physical well being. What I will look to them for is to monitor his speech and development of his motor skills, things like that.

I have mentioned several times about how thankful I am for things people in the community, our friends and family have done for us. Without disclosing specifics, I was once again very touched by a contribution made to "Cooper's Cause". I promise to pass the good that we have experienced on to others. I do not think anyone should hold this much goodness all to themselves. I feel so blessed to have Cooper and the support systems we have through our family, friends, doctors, nurses and everyone else that has touched our lives but I continue to be astonished at the generosity shown through your prayers and contributions. You amaze me and I thank you!

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!