(click for larger version)

As we move further away from that day, the list of things to “take care of” has shrunk. We got his actual pacemaker in the mail weeks ago, sent to us by the good people at the University of Iowa Children’s Hospital at our request. It was much harder for me to see and hold it than I anticipated. This was the small little device that kept him alive for 2.5 years, and now it was in my hand - a sobering reminder of the fact that it no longer needed to do its job. It was what we felt under the left side of his belly every time we held him, but had never seen. It was hard to accept. But I’m glad we have it, because it was part of who he was.

As you probably know, we chose cremation rather than burial. It felt right to us, and we could always “keep him with us” rather than having to make trips to a cemetary. We picked up his ashes the week after the funeral, in a relatively small and unassuming box that gave no indication of the importance of its contents. We put it in his room, safe on a shelf, surrounded by other items of his, and that’s where it is now.

My dad offered to make a box for the remains, since woodworking is his area of expertise. He crafted an absolutely beautiful box where we will place the ashes and keep them with us in the house somewhere as our own private place to remember Kevin. We haven’t yet taken the box and the ashes into the funeral home to have them put everything in place. We’ll get to that at some point when we’re ready.

As Dawn said in her update, we reviewed the autopsy results with Kevin’s doctors a few weeks ago. It brought a sense of finality to the looming medical questions we had, even if it didn’t bring the sense of peace with everything that we might have wished for. Things happened the way they did, and there is no point in going back and questioning decisions or symptoms or warning signs. But there is also no way to prevent our minds from drifting back into those thoughts regularly. Which they do, randomly throughout different days.

I dream about Kevin regularly, but not every night. Sometimes it’s a great dream where I am playing with him or walking with him or just going about normal daily stuff with him around. These dreams are comforting to me because I get to feel what it’s like to be with him again, even for a short time. Of course, it’s bitter-sweet because I wake up and feel the sense of loss again. Unfortunately, I more often have dreams where I realize we’ve left him somewhere or he’s home alone and needs help, or that he’s in the hospital getting tests. You can’t control your dreams, I guess, and I wonder how long it will be until these fade.

I always wondered how parents could go so long without entering our changing their child’s room after they died. I’d heard of people waiting years, and even right after Kevin died I wondered why it would take so long. Well, it’s been almost 2 months and we haven’t touched a single thing in his room. We can go in there if we need to, but we just haven’t made any attempt to clean it up or move anything or get rid of anything. The bed is still unmade and the sheets are still on from the last time he slept there. Some of his toys and things are still sitting around from when we moved them in on the day he died. His toys are in bins downstairs, covered by a blanket for now. The framed pictures that we took off the walls for his visitation are not yet hung back up. I don’t think that it’s denial or that we’re too sad to mess with any of that stuff - more like there’s just no pressing need right now. We don’t want to make decisions about what to keep and what to get rid of. We don’t need to right now. When it feels like it’s time, we’ll take care of those things. I’ve gone into his room quite a few times to get something or put something away and found myself just sitting on his little firetruck bed that he loved so much, just how I did every night when I read him “Good Night Baby” or came in to sit by him when he woke up in the middle of the night. Sometimes I have to just sit there for a while.

We have plans to build a memorial garden in our backyard for Kevin. Somewhere that we can sit and relax and remember. The plan is to have a fountain with flowing water which will be relaxing to us. We have had some plans drawn up that we will use as a starting point, and probably work on it a little bit at a time over a few years. We will use the generous gifts from many people who loved Kevin to help build the garden, so a part of many people will be there with us.

Dawn’s dad Rich organized people and purchased a bench to be put at the Niabi Zoo in the petting zoo area, with Kevin’s name on it. Kevin loved animals and enjoyed going to the zoo, so this will be a special way to remember him. A number of family and friends visit the zoo regularly, and hopefully this will be a positive place for them to remember Kevin as well.

We just got back from our first family vacation a few days ago - our big trip to Hawaii with Nathan and Jeni and kids that we had been planning for 6 months. Overall it was great to get away and Emily had a great time. But as much as we wished that we could let everything go and just have fun, there were many moments every day where we thought of Kevin and missed him. Every time we were at the beach we thought of how much he would have loved it, playing in the water and the sand. When we were driving or when we went places it was just so obvious that our family is now only three people, and this was our family vacation. A few days were especially harder for Dawn, but overall we both able to enjoy all the good moments. More than anything we loved seeing Emily have so much fun at the beach, swim with turtles, snorkel and discover so many fish, and just have a good time. ( pics )

We left for vacation on Father’s day. I wondered if it would be especially hard this year, but it was okay. Of course I was aware that it was the first one without Kevin here, but I’m still so grateful to be a dad to Emily, and it was still a good day. I appreciated the people who thought of me on that day and let me know in some way. Sometimes that’s all we really need the most - acknowledgement that a particular day is tough or that some days can be harder than others, and understanding if we aren’t ourselves. Some days it’s hard to act “normal”.

I still have many different thoughts and memories of Kevin. Most are great and make me smile. Some make my stomach turn. While on vacation we heard a helicopter overhead and both Dawn and I were taken back to the painful moment when they took Kevin away on the helicopter to Iowa City. When I hear little kids scream sometimes it makes me think of the odd screams of pain and discomfort that Kevin made in the hospital and how he just wanted his IV out so bad. My mind often flashes back to the moment in the hospital hallway outside his room when we realized that he probably wasn’t going to make it, and the extreme sense of helplessness and sadness that overwhelmed me.

But along with those thoughts are also the good things. And there are so many. I think of Kevin many times an hour, every day.

I picture him watching his Baby Einstein videos. He had little names for each of them and we were always trying to figure out which one he wanted to watch. He loved carrying around the DVD cases themselves, and he would panic if he couldn’t find the puppy. He would often choose to take DVD cases with him as toys when we went somewhere. Not even the movie. Just the case. Once he left his puppy case at grandma and grandpa’s, so they actually scanned in the cover and I printed it out and work so we could put it into an empty case and he wouldn’t miss it. He looked at it like he knew something was different, but decided it was good enough.

Now that it’s summer I am always thinking of how much he loved to be outside. He was always asking to go out and go for a walk or ride or push something. He would pull one thing after another out of the garage to play with - strollers, scooters, vacuum attachments, wagons, etc. Our yard often looked like someone had littered every form of wheeled item possible. And when he was done with that he would just want to walk down the street and never turn around. He was always so good about looking for cars - when one would come he would stop completely and step up on to the curb and wait for it to pass. Then keep on walking like he had somewhere to be.

I remember a period where I would read him a bunch of books every night. We would cuddle up on the small couch and pick out a stack of his favorite books. I would read each of them at least once, sometimes twice or more, and he loved it. He knew the routine and would follow the same patterns every time. He would usually fall asleep, and sometimes Dawn would find us both passed out after reading for a half hour. I really miss that time with him. After a while that habit kind of faded and I would read him one or two books in his bed, but those nights on the couch were some of my favorite.

His little looks and quirks pop into my head all the time. He had a way of rolling his eyes that was so goofy. If I was trying to correct him or talk to him seriously he would roll his eyes like he wasn’t really paying attention. His smile was so big and genuine, and he laughed so often. I loved how he swung his arm when he walked, like he just had somewhere important to be. When I put him to bed he would lay on his back until he got really tired, then always turn to his side to fall asleep. But he would usually take a quick look back to make sure I was still sitting there. I of course miss his dancing. Looking back at pictures and video I realize how much of it is of him dancing like a maniac.

There is a mirror next to our fireplace. Every time Kevin took a bath I would wrap him up in a towel and we would peak into the mirror to “see the baby” and go “peek!” and he thought that was so funny. Every time I look at that mirror I remember his face looking back at me.

I could go on and on. I just miss him so, so much. Every day.

Finally, I wanted to share a few thoughts on what it feels like to us to be eight weeks down the road from Kevin’s death, because like I said above it’s sometimes surprising to us. If you are reading this it’s probably because you continue to care about Kevin, us, and our family, and may want to know how things are going. We are going to a therapist every two weeks to discuss our feelings and talk about things that are going on or feelings we are having. It’s been helpful, but even though we are several sessions in we feel like we are just starting to really come to some realizations. For the most part I think we are doing pretty well. Or as we say, as well as we could be. In the beginning we would have entire days where we did almost nothing and cried often. Now we still have bad days, but we can keep it together enough to go on with daily life. Sometimes people will make comments about how well we seem to be handling everything. I think we are both strong, but in reality people don’t see the times that we leave gatherings or situations and cry in the car or say how hard it was just to be there. There are mornings when it’s just hard to get out of bed and start the day. There are times when all we do is sit around and look at pictures of Kevin or watch videos or talk about memories. There are countless conversations we have about how we are feeling, what feels right, what feels wrong, how to handle people or situations, how to deal with different emotions, whether Emily is okay, and wondering when or if things will ever feel “better”.

What we need more than anything is understanding that it’s been eight weeks but every day is still difficult for us, and we still need some extra patience. Maybe we have a day where we don’t act like ourselves, or maybe we choose not to go somewhere or do something that we normally do. We need for that to be okay.

A few weeks ago we came across a post about do’s and don’ts to help a grieving parent. Some of the advice applies more to the short period after the death of the child, but we could really relate to a lot of what it says. In case anyone wants to read it, we’ve copied it here.

Thank you all for your continued support, thoughts, and kindness. And realizing that this is not a struggle measured in days or weeks, but months and years, and even a lifetime.

Basically, Kevin died from complications of cardiac malformations. His heart was severely enlarged and thick. He had early pneumonia in both lungs. His other organs were enlarged as well, which is a sign of heart failure. As you can imagine, we had lots of questions. I was so confused as to how things got this bad without us knowing. He had just had an echo on March 31st which looked ok. His x-ray was somewhat concerning, but no one seemed that worried about it. Dr. Pyevich said that kids will compensate right up until the end, which is what Kev did. We would have found out how bad his heart was had he made it to the cath on May 8th. She also told us that upon examination of the heart they found that there was no surgical fix for what was going on. So had Kevin had a cath 2 months before he died we may have known that his heart was giving out, but the only option would have been a transplant. Kevin’s lungs were in rough shape, so he may not have even been a candidate for a transplant. She also explained that Kevin’s defects were very complex. Along with the structural defect (L-TGA) he had many other defects as well. I knew all of this, but maybe didn’t let myself think about it too much. I have spent the last 3yrs reading about adults with L-TGA and how great they were doing. I thought Kev would be the same. Dr. Pyevich explained that the adults that do well have less complex cases than Kevin did.  I thought I would feel better after going over all of this. I was so afraid that I had missed something and had we caught it earlier he would still be here. Turns out that is not the case, but it really brings me no comfort - he is still gone.

I started back to work at the Quad City Animal Welfare Center. I am just working Monday mornings and the first Saturday of the month for a few hours. It is nice to get out of the house and get my mind off things for awhile. I am so grateful that they offered me the chance to work so few days, it is just what I needed.

We are leaving for Hawaii in a few days. We had planned this trip long before Kevin died. I think it will be nice to get away and relax. Emily is very excited to go, and I think it will be good for her too.

Lastly, I wanted to share a song that Jeni sent me. She knew it would make me cry, but in a good way. It is called Heavenly Day. It truly captures how we felt about Kevin. So many days I would forget about all the health issues that he was facing and take the moment for what it was, pure joy and peace. Jeni told me that it makes her think of a day a few weeks before Kevin died. We and the Tackett’s were in Springfield for the half marathon that Matt and Nathan were running. Once it was done we all decided to go to Sonic for lunch. Jeni and the kids sat in the back of Nathan’s truck and ate their lunch. Kevin thought that was so funny and had a great time. I also remember taking the moment in - everyone was so happy. I know that the pain is so deep because we had so much joy. Every day was a heavenly day.

“Heavenly Day” ( download mp3 )

By Patty Griffin

Oh heavenly day, all the clouds blew away
Got no trouble today with anyone
The smile on your face I live only to see
It’s enough for me, baby, it’s enough for me
Oh, heavenly day, heavenly day, heavenly day

Tomorrow may rain with sorrow
Here’s a little time we can borrow
Forget all our troubles in these moments so few
All we’ve got right now, the only thing that
All we really have to do
Is have ourselves a heavenly day
Lay here and watch the trees sway
Oh, can’t see no other way, no way, no way
Heavenly day, heavenly day, heavenly day

No one at my shoulder bringing me fears
Got no clouds up above me bringing me tears
Got nothing to tell you, I’ve got nothing much to say
Only I’m glad to be here with you
On this heavenly, heavenly, heavenly, heavenly
Heavenly day, all the trouble’s gone away
Oh, for a while anyway, for a while anyway
Heavenly day, heavenly day, heavenly day

But first, I want to tell the world about Kevin’s mom - just in case someone doesn’t know how lucky he was. There are poems and sayings about how kids with special challenges are reserved for those mothers who can handle it - who have the strength and love to be able to raise them and give them every chance they can. I have to wonder if there is some truth to that. In order to truly understand Kevin’s life and appreciate how he even got to day one, you need to know how hard his mom fought to get him here. This is going to be a long story…

At 16 weeks, on an otherwise normal Monday, Dawn called me from her doctor’s visit as I was getting Emily ready for gymnastics practice. She was crying. She said she couldn’t drive home, and I needed to come pick her up as soon as possible. I drove there and found her in the parking lot crying in the car. The doctor had picked up the baby’s heartbeat but it was very low - low enough that she knew it wasn’t good. After us trying for quite some time to get pregnant and having an otherwise normal pregnancy up to this point, she was heartbroken. They told her to go home, and for us to go to Iowa City at 20 weeks for a level 2 ultrasound. There was nothing else they could do. This was the first time we thought we had lost our baby, which we had just found out was a boy.

Less than 2 worry-filled weeks later, Dawn felt that she needed to go in to her doctor again. She was worried and needed to get the baby checked again, and it had to be today. This was the first time that I learned to just give in and trust her instincts, because she is (almost!) always right. Call it luck or fate or whatever you wish, but that day in the doctor’s office a wonderful woman named Dr. Vickie Pyevich (pediatric cardiologist) was training the ultrasound techs about recognizing fetal heart problems from an ultrasound. We got in shortly before she was to leave, and she agreed to take a look at Dawn before she left. She was the first to recognize and diagnose Kevin as having L-TGA (the lower ventricles of the heart were switched around) and complete heart block. This was why the heart monitor was picking up a low heart rate - the bottom chambers of the heart were not beating in sync with the top. Since we knew nothing about the anatomy of the heart at the time, this was hard to understand and very overwhelming, but she reassured us that this was not necessarily a fatal diagnosis, and there was a chance that he be born and have a life. There was hope.

Dawn came home from this visit as determined as ever. She read everything she could about congenital heart disease and tried to understand everything that may be facing our boy during the pregnancy and his life, if he were to make it. If there was anything she could do, she would do it. If there was any information she could absorb to try to make the best decisions for him, she would learn it. If there were any questions that needed to be asked, she would ask them. She would give this little boy every fighting chance she could give him.

We went to Iowa City at 20 weeks more informed than before, a little hopeful, but still knowing that things could turn out very badly. During the ultrasound, we could tell that the tech and doctor were proceeding with caution and choosing their words wisely. When they came in and sat down with us in a way that said “bad news”, it was another low point. Our baby boy had a serious heart problem, and they didn’t think he had a good chance of surviving. They said that under these circumstances many people consider termination and we had some long discussions with doctors and nurses about what his condition really was and what kind of future he was facing. We took home some books about losing your baby and how to deal with it. It was the second time that we thought we had lost our little boy.

After talking again with Dr. Pyevich, Dawn was reassured that there was some hope and all was not lost. If she wanted to fight on, there were things that could be done. We set up another appointment in Iowa City to understand even more about what Kevin had and what could maybe be done.

Five days later we were in Iowa City again for another ultrasound and to talk to more doctors. We were told that Kevin would certainly need a pacemaker at birth, and there were special ones small enough for newborns. But his heart rate was still low, and he may not make it long enough in the womb at that rate, so they decided to recommend an unconventional medicine that would raise the baby’s heart rate. Unfortunately, it also raised Dawn’s heart rate. And it had to be taken every four hours, around the clock, 24 hours a day, for the rest of the pregnancy. Dawn didn’t hesitate. She would do it. If she could just get him to 30 weeks and 3 pounds, he would be big enough to have the pacemaker operation. There was a chance, and she would do anything in her power to give it to him.

Thus began Dawn’s long journey with a kitchen timer. We set it to go off every 4 hours, and I’ve never seen anyone so dedicated to a schedule for such a long period. She took the timer with her, had it throughout the day, and had it on her night stand every night. She took every pill - six a day, every day, for more than 16 weeks. Over 600 pills. And not only did it raise the baby’s heart rate, but it raised hers as well. She became tired much more easily, she needed to rest more often, and her body was trying to adjust to feeling like it was always pumping on adrenaline. It was hard for her to sleep and hard for her to relax. But she never complained and never thought twice, because this may be the only chance our little boy had.

Five days after that visit to Iowa City, we were fortunate enough to be introduced to a doctor in Madison, Wisconsin who was an expert in fetal heart rhythym problems and was doing a study to help diagnose and understand them. She may be able to help us determine how our boy was doing on the medicine, if he was getting into trouble, and when we would need to deliver him to give him his best shot at life. We made four separate 4-hour trips to Madison, where Dawn was placed in a contraption that is hard to describe. It was a small room, maybe a 20-foot cube, that was completely enclosed with a huge door in order to isolate the delicate signals that were being used. They used a big camera, for lack of a better word, that might remind you of an enlarged version of the x-ray machine they use at the Dentist. Dawn had to lay in an uncomfortable position for up to a half hour at a time, all alone in this dark room, in order for them to try to get a good EKG of our baby boy and isolate it from Dawn’s heart beat. I sat on the outside, looking at the computers in amazement at Dawn’s courage and the technology being used to try to figure out if our boy was going to be okay. We went there four times, and the doctor there was a big part in determining when Kevin needed to be born to give him the best shot. Dawn never complained. Not once.

During this time, I had a random dream one night where I called our baby Kevin. It was an odd choice. Kind of out of the blue, and not like any of the names we had been talking about. But it stuck, and we decided that our boy was named Kevin.

Through the pregnancy, Dawn had 35 ultrasounds, 2 Amniocenteses, 5 echo’s, and 4 trips to the “chamber” in Madison. And she was taking the heart rate medicine the whole time. And she was gestational diabetic so she had to follow a strict diet. If there was ever a story of unselfish devotion to your children, this was it. She amazed me. Even with odds that were not reassuring and a pregnancy unlike anything a mother dreams of, she wanted more than anything to see her baby Kevin and give him a shot at life.

Finally, late in October, it was time to schedule a c-section. The doctor in Madison determined that Kevin’s heart rate was such that he needed to be born soon. Since Kevin was still premature, the doctors decided that steroid treatments would help his lungs. So we made yet another trip to Iowa City where we spent 3 days and Dawn underwent steroid shots and finger pricks for blood sugar checks every hour, all day and night, for 3 days, to hopefully give Kevin the extra help he needed to make his lungs strong. It was a long weekend and extremely uncomfortable for her. I think she complained once. But I forgive her for that.

By November 7, 2005, Dawn had done everything she could do. It was time for Kevin to be born, and he was. We didn’t know what to really expect and we were scared to death, but he came out pink and crying. He had made it to 36 weeks through the extensive care of many doctors and nurses and because of the dedication and love of his mom. She gave him every chance he could have, and now it was up to the doctors in Iowa City to do their magic.

The day he was born, Kevin was diagnosed as having some more problems than they were able to diagnose in the womb. It was another shock, but we still thought everything would work out okay. He would just need another operation than we anticipated.

After his initial operations were done, Kevin didn’t improve as they expected him to. By November 23, day 16 of Kevin’s life, we had hit another low. The doctors came in as a group in the way that you might imagine in your bad dreams. They told us that Kevin was very sick and they didn’t expect him to make it. It was the 3rd time that we thought we had lost our little boy.

But again, hope was not lost. If there was any chance, Dawn was not going to give up. They decided to do an open-heart operation as a last effort to keep him alive, and to everyone’s surprise it was exactly what he needed. Dawn almost never left his side the whole time he was in the hospital. She was there every morning for rounds and tried to understand every measurement and medical term that was tossed around. If there was anything she could do, she would be ready. She was an active participant in his care, and I think she was one of the reasons he got better. She refused to give up on him.

From the time we finally got to bring him home, Dawn was the best mom that I could even imagine. She was on top of everything. She read everything she could read about caring for Kevin, joined discussion groups on the Internet, talked to people, read books, and did everything he needed to improve. She woke up several times a night to feed him through his NG tube, one drip at a time from a syringe, because I couldn’t get it right. She learned how to put the tube up through his nose and down into his stomach so he could be fed. She was thrown up on too many times to count but kept going through her tears of exhaustion and frustration. She made him learn to eat despite his plans to the contrary, because that’s what he needed. I saw her feed him a whole cup of yogurt, then saw him make himself throw up because he didn’t want to eat, only to see her say “oh no you don’t, we’re eating this” and proceed to clean up the vomit and feed him again. Because he needed the calories to grow. She had a keen ability to recognize if he was sick or needed something extra. I had learned over the few years that if she thought something was wrong - even if I thought she was over-reacting - that I needed to trust her instinct because she was right. And she never failed him. Not once.

Towards the end of Kevin’s life, Dawn was noticing some changes in his behavior. He seemed a little more tired, she thought. He wanted to ride in the wagon more often than pull it like before. He wanted to watch movies more often, rather than dance. She suspected something was wrong, but I tried to reassure her that it was probably nothing to worry about. Even as Kevin entered the hospital for the last time, she knew something was wrong. She called the cardiologists and had the doctors notify Iowa City. A cath was planned the following week. She knew her baby boy was having problems, and she did everything humanly possible to help him. It just wasn’t meant to be. There was nothing more she could do. On that early Friday morning when she called me at 2am from the hospital to tell me to hurry there, she had given our boy everything she could give. The doctors came into the hallway a little later to tell us the bad news. It was the fourth time in our life we had been told that we were going to lose our baby boy. But this time it was for real.

There are so many people who knew Kevin that never even knew he had a heart problem. His mommy worried her heart sick at home many days, wondering if she was doing enough, wondering if there was any chance that she wasn’t giving Kevin. But many people didn’t even realize her struggle because she was never someone who announced it to the world or made a big deal about Kevin’s heart problems. Her mission was to give Kevin the best life possible, and part of that was to let him live like a normal little boy without a care in the world. To take the burden of his health off his back and on to her own. To shift the worry off him, me, and others so that we could fully enjoy Kevin for the little boy he was. She has been an inspiration to me and a model of the kind of selfless love that a parent can have for their child. Without her and everything she did, there’s no doubt that I wouldn’t have gotten to meet my little boy and spend 2 1/2 amazing years with him. I know I can’t do her justice in a post on a blog. But hopefully those of you who know her already know what an amazing woman and mom she is, and that Kevin’s story was only possible because she gave so much of herself.

We can’t even begin to thank everyone enough for your help and comforting words when we have needed it most. The number of people who came to Kevin’s visitation was overwhelming, and showed how many lives he touched during his short life. The outpouring of love and support that we have received has shown us what great family and friends we have and how much everyone is willing to give of themselves for someone in need. Thank you so much.

We have okay days and not-so-okay days. Life must go on, and we are slowly easing our way into our “new normal”. Once the initial shock passed and we got through all the days of things to take care of, places to go, and people visiting, we’ve found that the reality of all this hits us differently. It sinks in and feels more real. It’s a profound sadness that is always with us and the ache keeps getting deeper. Every day we remember more things that we miss about Kevin and see things that remind us again that he’s not with us. Random thoughts enter our minds and our stomachs twist as the realization that he died hits again. Sometimes we can just sit and look at pictures and watch video for hours in the hope that we never forget what it was like to have him with us. Going places, eating dinner, bedtime, the morning routine - it’s all easier now, but it’s an easy that we don’t want so we don’t enjoy. We wish we could have back the days of messing with car seats, warming up corn dogs, getting cups of milk, putting in Baby Einstein movies trying to find the one he wants, and reading book after book.

Emily is handling everything as well as can be expected for an 8-yr-old. She is strong, but still has moments where she breaks down in tears, or comes into our room in the morning after having a dream about Kevin. She asks very insightful questions about Kevin and our family. We try to be as honest as we can and let her know that we don’t have all the answers either. She has continued to do well in school and play with her friends.

Out of all losses and tragedies some positive things must come, and we’ve found this to be true with Kevin’s death. It’s brought us great joy to hear stories of lives that have been changed because of Kevin. People have told us that they are going to change their lifestyle and spend more time with their kids. That they will try to live each day to the fullest like Kevin did. They have decided to be an organ donor or to donate blood. Two people can now see because they received Kevin’s corneas (the only organ of his that he was able to donate). And one person decided that if Kevin could undergo tests and procedures, then he could be strong enough to get a test that he had been avoiding - and the fact that he did it sooner rather than later may have saved his life. Kevin touched so many people during his life, and it’s comforting to know that even his loss can have a positive effect on people.

One thing that we are doing in memory of Kevin is creating a garden / sitting area in our backyard. We plan to get a nice fountain with flowing water that we can sit and watch, relax, and enjoy being outside. We will plant some flowers and plants and trees that were given to us in memory of Kevin. It will be a place of comfort, and somewhere that we will sit often and remember him.

We will continue to post updates about how our family is doing and anything that those who loved Kevin may be interested in. We know that many of you loved him dearly and are also still dealing with the loss of him in your life. We hope that all the positive things that have come from his death and the love of your family and friends will bring you comfort as well.

We are beside ourselves with grief. Kevin was such a huge and joyous part of our life. We are spending lots of time looking at pictures and telling all of our funny memories of Kevin. He was such an amazing and sweet little boy, we feel truly lucky to have had him for 2 1/2 years. We are trying very hard to concentrate on the time he was here and how he lived everyday like it was the best day of his life. He taught us all how to live and I learned more from him than anyone else. Our grief is intense, but we are taking comfort in family and friends, the time that we did have with Kevin and all of the memories that we will keep with us forever.

Goodbye sweet boy. We love you.

So far he’s been a pretty miserable boy. I think is the sickest we’ve ever seen him (except for after he was born, of course). He’s completely listless and isn’t himself at all. Tomorrow will be his 4th day there and he doesn’t seem to be improving as quickly as we would like, so we are kind of worried. Luckily his cardiologist is right nearby and has stopped in to see him a few times. She reassures us that she doesn’t see anything heart-related, and that he is just having a hard time kicking the combination of things that hit him all at once.

We hope he’ll recover soon and can come home in the next day or two.

Kevin got to go to the Family Museum the other day for a play group with other kids. He had a fun time and loved driving the play car, of course.

Bath-time with cousin Keaton (”Kiki” as Kevin calls him) is always fun!

And finally here are some miscellaneous pics…

We showed up at the station, had a bite to eat, then went up to the studio where they were doing the telethon live. Kevin sat and played with toys for a bit so they could get some background footage. We had also visited the CTC location a few weeks ago where they filmed him to get more footage. Our segment wasn’t long, thankfully, but it was fun to see Kevin on TV and to be able to mention Sara and how she has helped us. Dawn did a great job and sounded perfect. I, on the other hand, wasn’t expecting to be asked any questions and didn’t come across sounding as smooth!

Kevin was a wreck this morning, having to get up and out the door around 6:30am. He always has a cup of milk in the morning, but since he was going to be sedated he couldn’t even have water, so he was crying and asking for his “bup” (cup) every few seconds. He didn’t sleep the whole way to Iowa City, but by the time we checked in at 8am he was doing alright. By the time they started checking his temp, blood pressure, etc after check-in, though, he was a full wreck again. They do their best to not make these kids wait too long, but when you have a starving 2-yr-old seeing lots of doctors and getting lots of things checked, every little wait feels like eternity.

We saw the pacemaker doctor first, and she said his pacemaker is working very well with no signs of trouble and battery life still looking like 2.5-3 years to go. When they do these checks they just hold a small “puck” over his abdomen where his pacemaker is and it communicates wirelessly with the device. This time they had a little stuffed puppy that fit over the puck and he seemed to enjoy that. Since he was still pretty cranky during this, they decided to do the sedation after all, since they were considering trying an echo without it. There was no way that was going to happen.

From there we headed upstairs for a chest x-ray. This one was easier than we’ve had before because he just sat in a chair and did really well, rather than being strapped into a silence-of-the-lambs-style contraption. His lungs looked a little wetter than they expected, but that could be because he was sick last month or because the picture wasn’t very clear. They didn’t seem worried about it and said they’ll look again in 6 months. Kevin got his Thomas the Train sticker and we headed back to the cardiologists.

They did some more general checking up and got the echo machine ready while we gave him his sedation. It’s just two syringes, which he’s used to taking, but since these aren’t banana flavored like his usual meds he fought it. He went down fighting, but eventually succumbed to the sedation and was out.

The echo went well. A guy named Roger did it for us, who has done his at least once before. He’s a great guy and talked to us, explaining everything he saw. He had a new machine that let us see Kevin’s heart in 3-d, too, which was neat but still pretty hard to see what was what. Everything looked good as far as he could tell, and Kevin’s leaky valve was leaking only mildly, so it’s good to know that it’s not getting worse. After the echo they did a quick EKG while he was still asleep. Kevin hates EKG’s because they put about 15 stickers and probes on him and he has to stay still.

Finally the head cardiologist Dr. Law came in and told us everything looked good overall. He upped his Enalapril medicine a little and made a small change to a setting on Kevin’s pacemaker (if you must know, the delay between atrial contraction and ventricular contractions was extended just a bit to give the ventricles more time to fully fill).

Then we were all done, so we just had to wake him up. He was still pretty out of it so it took a while. We removed all his EKG stickers and stuck a cup in his mouth and he slowly came around. He acts a little “drunk” when he wakes up and was slurring his words, asking for “mommy-daddy-cup-byebye”, and almost falling off our laps like he couldn’t keep his head up. He drank some fluid so they gave us the okay to go home.

As we often do after his check-ups, we stopped at McDonalds for a Happy Meal on the way home. Unfortunately Kevin was still out of it and screaming. We had to stop and daddy had to sit in back and hold him for a bit while we ate. He finally fell asleep on the way home and he’s still napping away after his long morning.