Little Walker

Kevin continues to do very well. He started walking! Most of you have seen him walk, he has this sense of independence that is hilarious. He will take off down the street without looking back and doesn’t care if I follow him. He is also climbing things. He is very daring and has little regard for safety. He loves swimming in the pool and will jump right in. His personality is so funny….he makes me laugh everyday.

Emily is home from school for the summer. I think it has been somewhat of an adjustment for Kev, he is used to having me to himself all day long. It can be challenging to find something to do that will interest a 7yr old and an 19 month old, but so far this summer has been great.

I also wanted to say a little about Kevin and Matt. They are inseparable. When Matt gets home from work, I might as well be invisible He is such a daddy’s boy. They do yard work, dance, sing, read books, play games, etc.. One night, a few weeks ago, I came home at 9:30p.m. and I was thinking both kids would be in bed. I went down to the basement, the disco ball is going, music is blaring and Matt, Emily and Kevin are having a dance party! They were having such a great time, I am so grateful that Matt is such a fantastic dad.

Kevin continues to make progress in eating table food. He will eat more and accept more textures. He is still receiving feeding therapy, but it is now once every two weeks. He still is very picky and feeds most of his meal to the dog, but overall there has been great progress in the last 6 months.

I have introduced Kevin to “time outs” in the past few weeks. He likes to hit his sister and throw fits when he is mad. I honestly have to try very hard not to laugh at his tantrums, especially when he looks back at me to see if I am watching. Usually, all I have to do is ask him if he wants a time out and his behavior improves dramatically. Sometimes he gets that look in his eye and continues doing what he was told not to, he knows he will get in trouble but it is worth it.

Everything is going great with us and we are really enjoying the summer. I am really going to make an effort to update more often especially with pictures.

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May 2007

Kevin is now 18 months old and doing well. He’s babbling a lot more and says at least 10 words well enough that we can understand him. He’s continuing to develop quite a strong attitude, and he wants absolutely everything to go his way or he screams and has his little temper tantrums. He is eating a lot better now, taking bits of food from whatever we are eating and actually putting them in his mouth and swallowing. He really likes shredded cheese, goldfish crackers, and lunch meat. He still doesn’t get enough calories from food alone, though, so he drinks pediasure and milk and still has his yogurt. Luckily he’s finally off the bottle and formula, which sure makes our life easier.

In late March we took a trip with our friends Nathan and Jeni to their childhood home of Salina, KS. Kevin travelled pretty well given the distance and really enjoyed his stay. He got to meet Jeni’s parents and Nathan’s mom and had a good time visiting them. Also while in KS he began to walk! He took his first real steps in Salina and within days he was stumbling around. Now he’s nearly a pro and rarely crawls anymore. It’s amazing how quickly it changes, and we were definitely glad to see him get to that milestone.

He loves to be outside. He will roam around the yard walking in the grass and just exploring and if given the chance he’ll take off down the street without looking back. We go on a lot of walks, which he enjoys, and he loves riding his little push tricycle. One of his favorite things to do is to push things - anything. Strollers, bikes, scooters, wagons, it doesn’t matter. He’s content to just push things around and watch the wheels spin. He also gets very protective of whatever he’s pushing and won’t let anyone else touch it. It’s like he has his work to do and doesn’t want to be disturbed. He’s always amazed by wheels and wants to turn things over so he can spin the wheels. Maybe he’s got a little engineering brain in there.

Kevin had his bi-annual “big” checkup in Iowa City on Monday and things went well. We got up early and arrived in Iowa City at 7:30 and were there for about 6 hours while they did a variety of tests and checks. First they did the usual weight and height, and he is now 21 pounds 3 ounces and just barely back on to the growth curve. He gets very worried and skeptical right away when the nurse starts putting his blood pressure cuff on and blowing bubbles - he knows what this is all about. He did okay, though, only putting up a small fight. He is actually very scared of rubber gloves, too, and cries if he sees any. At the grocery store a lady was handing out samples and had rubber gloves on and Kevin had a total meltdown when he saw them. Poor little guy.

Next we had the pacemaker check, where they probe the pacemaker with a computer by putting a small “puck” right over his skin. It talks to the pacemaker and the computer and they can watch his heart rhythym and check all the data stored in the pacemaker itself. Almost everything looked good. The pacemaker says it has 3.5-4 years of battery life left in it, which is fantastic. The only concern is that one of the leads from the pacemaker to his heart is still requiring a growing amount of voltage every time it fires. This could mean that the wire is slightly damaged, or the attachment to the heart itself is a little off, or something else. They want to see him again in 4 months to check on it, but as of right now it is not a big concern. Just something to watch. He still has his underlying natural hearth rhythym of 50 beats per minute which is always reassuring. If the pacemaker were ever to fail for some reason he would just start feeling tired and sick, not have any sudden cardiac failure.

Then came the sedation that put him to sleep in preparation for the echo. He fought it and didn’t want to go to sleep but eventually had to give in and he was out. It took quite a while for all the right doctors to be in place, but eventually they did the echo and then the full EKG while he was still asleep. Everything looked very stable and well, with no surprises or new concerns. Dawn asked some questions about different possible operations for kids like Kevin and discussed them with the heart doctor. He reassured us that Kevin looks good now and that he wasn’t expecting it to be 5-10 years until we needed to make more decisions, but rather possibly decades. So maybe in a few decades we will need to address the issue of an eventual transplant or other operations if his heart is struggling in its current form, but we shouldn’t rock the boat right now. Things are good.

Kevin woke up quite the angry little guy and stayed pretty moody all day. He does not like doctor visits, but we think he handles it pretty well for being 18 months old!

We are really looking forward to swimming in the pool this summer. We think Kevin will really love it, since he likes taking a bath so much. We have to be extra careful of his sun exposure to his skin condition, but he should be able to enjoy the summer just like any other little kid. We can’t wait!

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March 2007

It’s been over 3 months since we last updated this site - sorry! It’s been a busy winter for us, with Kevin being sick almost continuosly since late November. He had just about every kind of virus that went around this winter. We were able to keep him out of the hospital and overall he did okay, but it was a struggle to keep him eating and healthy. He’s been well for a few weeks now, so we hope that the illnesses are over.

He’s just past 16 months old now and he’s getting ready to walk. He cruises around the furniture and can walk while holding our finger but he just doesn’t seem to want to let go yet. He just hit 20 pounds this last week, so he’s kind of fallen off the growth charts and the doctors want to see him grow some more. But since he had a rough winter, we expected him to struggle a bit with gaining weight.

He finally got his hair cut a few weeks ago - it was getting really long and into his eyes. It looked like a bad hair piece sometimes, and we always called him Donald Trump. The haircut went okay but he had a bit of a fit when they tried to put the cape on. He thought it was a bib and someone was going to try to feed him! He looks a lot better now, though.

Lately he has really grown into liking books and he “reads” them all the time. His favorites are Kipper’s Colors, Find The Kitten, and I Love My Puppy. He’s rarely patient enough to actually read a whole page, though. He just likes to turn the pages as quickly as possible and flip between them. He’s also started talking and he has a few words that we can understand now. He says “mama”, “book”, “ball”, “dog”, and “cat” pretty well and just says “Ba!” for everything else in the world.

Eating continues to be the biggest struggle for him. A feeding therapist is coming to our house once a week to work on his oral aversion. He still really doesn’t like to eat at all, and he would probably prefer just to snack on a bottle a few times a day. Dawn has started making him her own blend of baby food with bananas, avocados, yogurt and some other good stuff to try to get him to eat more. It’s high in calories and he seems to like it better than baby food, so that is working well. If it weren’t for all her efforts to feed him, he wouldn’t be growing how he is! We saw the GI doctors in Iowa City and he is on Prevacid to help with reflux (which they suspect he has) and we hope to meet with the nationally known feeding therapist in Iowa City soon. He has gotten better with eating since he got over his sicknesses and he hasn’t thrown up in days which is a lot easier for us!

As he is getting older, we are really seeing his strong personality (aka ATTITUDE) come out. He is quite the little stinker and he doesn’t like to be corrected. He has lately begun throwing temper tantrums when he isn’t happy, crawling away a few steps then flopping on his belly and pounding on the ground. We have to try really hard not to laugh! He loves to antagonize his sister and tear down anything she is building or playing with.

This weekend we all went to the Doodlebops concert (a Disney show) and he really loved it. He was dancing the whole time and waving his light up stick. He really likes music and loves to dance at home. Since it got warm, we also got his new tricycle out with a push handle in the back. He really liked that and of course had a tantrum when we had to take him off. He likes playing with all his toys, especially balls that he can put into things. At nap time he likes to snuggle up with Dawn in the recliner and hug his Glow Worm.

Overall things are going well and we are enjoying Kevin as he gets older. He is a really fun boy and he makes us laugh all the time. He is a total goofball!

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Back Home

Kevin was discharged from the hospital on Wednesday Nov 29 and is happy to be home. He came home on antibiotics, breathing treatments, and steroids - but most of those he will end by the weekend. He is almost back to his normal self, crawling around, getting into things, babbling up a storm, and generally being happy.

One difference is that the steroids are seeming to make him really hungry! We’ve never seen this kid each so much in his life. He cries for his bottle and even eats lots of his baby food. Hopefully this will put some weight back on him. It feels like he’s already gained a bunch back, which is good. He sees his doctor for a follow-up visit on Monday Jan 4, so we’ll find out then how much he weighs.

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In The Hospital

Almost two weeks ago, Kevin caught the stomach virus that is going around everywhere and ended up in the hospital overnight so they could watch for dehydration. He did fine and was released the next day (this was before thanksgiving). We thought we were done with sickness once he started feeling better, but just as that was ending he caught a respiratory bug that has been going around also. They put him on breathing treatments and eventually antibiotics, but he just didn’t seem to be getting better. Finally Dawn thought he just didn’t look right and brought him into the doctor for the 4th time in a week, and it turns out that he had developed pneumonia!

So, he ended up in the hospital once again on monday. This is his second night there and he is improving with the help of IV fluids, breathing treatments, and steroids. His oxygen saturation levels were low last night, so he also had a little oxygen to help him (so he needed those patches on his face to hold it). We thought he would get by without it tonight, but they ended up giving him some more tonight just to keep his sats up.

He seems to be getting better, but it’s slow. He was really listless and not himself earlier, but his attitude has come back a bit today and he is not happy in the hospital crib. He wants to crawl and play, but of course he can’t with his IV in and being in the hospital room. He hates the board they taped his IV hand to and is constantly wanting to pull his line out, grab at the equipment, shake the crib bars, etc. He stares at each nurse who comes in to do something, refusing to smile or laugh no matter how hard they try to make him. He looks so serious and untrusting of everyone, but then watches around the corner as they leave the room and turns to us and smiles. Dawn is staying with him, and of course doing a fantastic job taking care of him.

Going to the hospital isn’t fun for any parent, and it makes us especially nervous because we don’t want anything more serious to come of it. But we take comfort in the fact that he’s at Genesis rather than Iowa City, so it’s not that bad. He also seems to be getting better slowly and responding to the treatment, so he should be fine.

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Thanksgiving

Thanksgiving will always be an emotional time for us. It was this time last year that we were in the midst of Kevin’s medical crisis.

Matt and I came home from the Hospital last Thanksgiving for a short visit. I remember telling myself not to go into the room that we had made into Kevin’s nursery but I could not stop myself. I sat in the chair in his room and just sobbed for the baby boy that I thought I would never be able to bring home.

Later that day we went back to the hospital and spent more time with Kevin, reading books and singing to him. It was so difficult to watch my tiny baby boy fighting so hard and knowing that we were running out of options. The next day we knew we were going to have to make some serious decisions regarding Kevin’s care. I will never forget when Dr. Burkhart, Kevin’s surgeon, came into our room. He had a pink sheet off paper in his hand, which I knew was a consent form.

It was at that moment I knew they had a plan. Even though no one was certain whether or not another heart repair would help Kevin, something inside me knew this was our only hope. I will always be grateful to Dr. Burkhart for everything he did for Kevin.

The next day our very sick little boy went to surgery. Before he went I had a moment alone with him. I felt that I needed to tell him that if he was tired and needed to leave us it was ok, but if he could, I really needed him to keep fighting. I told him how much we all loved him and wanted him to come home. I had hope that everything was going to be ok, but it was hard to let myself think that way.

Kevin’s nurse that day was Bob. For those of you who met Bob, you know how great he is. He came in after we had been waiting for what seemed like an eternity and told us that Kevin was stable and not on ECMO (heart bypass). This was huge for Kevin, and honestly it took me a moment to process what he was saying. I made him repeat it, just so I knew I was hearing him correctly.

A few hours later Kevin was brought back into intensive care, and I was not prepared for what I saw. Kevin did not look real to me - he had tubes everywhere and his chest was still open. It didn’t matter though. I went over to him and kissed his forehead and told him I was so proud of him for being so strong.

This Thanksgiving is so different. I am so thankful that we have Kevin with us and his health is stable. He is a beautiful child inside and out and he brings true happiness and joy to our lives. I hope all of you had a great Thanksgiving.

Matt made a video for Kevin showing pictures of him over the past year. The link is in the menu bar on the left, we hope you enjoy it!

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Happy Birthday!

Kevin turned one today! It’s hard to believe that it has been a year since we arrived in Iowa City, expecting a short stay for a pacemaker installation and instead getting a 6-week stay with lots of complications. It’s amazing to be where we are today, with a little boy who is healthy, growing, and doing well. We still take one day at a time, but we feel so lucky and blessed to have him with us. Although his health is still on our minds on a daily basis, we have been able to truly enjoy him as any parent would their child. Last year around this time, the thought of us living a normal daily life with a healthy and energetic 1-year-old seemed so foreign and impossible. To be here just feels so, so good.

A lot has happened since the last entry (due to our busy schedule and procrastination in updating this site). Kevin is now over 18 1/2 pounds, which is getting bigger but still hanging down around the 5th percentile for weight. He’s small and thin, but not oddly so by any means. He just seems like a smaller boy who could stand to gain a couple pounds. We would like to see him gain more weight than he is, but so far the doctors haven’t expressed much concern or mentioned anything drastic that we need to do to try to get him to gain weight. So I think he’s fine where he is. He still takes 3 different medicines twice a day and fights it every time. When he sees the syringes he shakes his head “no” and makes noises at us, so he definitely knows what they are and that he doesn’t like them.

He has become an expert in crawling and can dart into the most dangerous of places in a split second. He loves to crawl down the hallway and into the bathroom, where he gets into trouble for unrolling the toilet paper and opening the drawers. Unlike Emily, Kevin is quite the trouble maker. He is fascinated with outlets, cables, wires, drawers, cabinets, our carbon monoxide tester, etc. He listens when we tell him no, but he’ll often give us a grunt and go right back to doing it. Correcting him and moving him away from something doesn’t do much good, because he just bull-dozes right back to where he was as if we didn’t even matter. We like to call him Godzilla because he’ll just put his head down and plow through anything to get to something he wants to destroy.

He isn’t walking yet, but he pulls up on 2 feet on his own and lets go with one hand. He scoots along the couch at a slow pace, often in an attempt to grab Emily’s Gameboy. He loves the gameboy! He has three teeth now, all on the bottom. It gives him a cute little grin. His hair is getting pretty long also, and he may be in need of a haircut before too long. His hair is wispy and he’s got some cowlicks, so we call him Trump Hair because he looks like Donald Trump sometimes. He kind of says mama but it’s usually included along with some babble. He loves to scream and make lots of noise, so the concern over his vocal cords is really gone for us now.

Eating is still the #1 challenge for us. The boy just doesn’t like to eat. He welcomes his bottle most of the time and has been holding it himself for quite a while, but he seems to hate eating solid foods. He does alright, but doesn’t eat nearly as much as most kids his age. We still need to sing him songs and distract him while he eats, and he sometimes cries out of frustration. He’ll hit the spoon like it’s his enemy, and do his best to knock the food jars and bottle off his highchair. He has such determination when he’s trying to knock food away, we have to at least give him some credit for that. He tends to gag on solid food like goldfish and crackers, and every so often he’ll do it enough that he pukes up his food. No fun. So feeding is probably our most stressful problem that remains. And if that’s the worst thing we have, we can’t complain!

He sleeps pretty well for us, going to bed about 6:30 or 7:00 and sometimes needing a bottle at night and sometimes just waking up hungry at 6:00. We don’t want to make him not eat in the night, just because he can always use the extra calories. Especially now that he’s so active! He hates to take naps and refuses to sleep in his crib during the day. Dawn has tried letting him cry it out, but it makes us nervous to have him cry for so long and get worked up since we aren’t sure if that’s okay with his heart. We will ask the doctors next time. It’s hard enough as it is to let your child cry it out, but it’s even harder when you worry that his heart can’t handle it. He goes to bed at night okay and has no problems sleeping in his crib. He sure fights going to sleep during the day, though - even if we are holding him. He will move around and grunt and wave his arms, all in an attempt to stay awake. He’s got quite the attitude!

Our next doctor visit is his 1-year checkup with the pediatrician on thursday nov 9th. We expect everything to go fine. Then next monday the 13th we visit Iowa City for a pacemaker check and sedated echo, where they will do a detailed followup look at how everything is going. It’s always hard to go back. Although we know his congenital heart disease is there and always will be, he’s living such a “normal” life that we can almost forget all of that for a while. But then the Iowa City visits come up and we’re snapped back into reality and worry that they will tell us bad news. We always stay positive, but the fear or being blindsided by terrible news is still there, having faced exactly that a few times before. So we kind of dread making that visit, even though we really think things are going very well.

We made more blankets again this year to take up to the PICU when we visit. Dawn also got one of her favorite blanket-making companies to donate a few blankets, so we have a total of 18 to bring to them. The quilt-making day was a long one - 5 hours - but there was Matt, Dawn, Kristel, Brent, Joanna, Jeni, and Joanna’s friend Julie there to help us so it was fun. It’s something we can do every year as a way to give back to the hospital when we visit to say hi. We went to the Heart Friends picnic several months ago, which is a gathering of people with children who have gone through heart problems, and some of the doctors were there and remembered Kevin. One said that his picture is up in their break room, so he has not been forgotten We think of the team of doctors and nurses often, and how much they did for Kevin and us. They are an amazing group of people.

So, one year down and many more decades to go. All is well and Kevin is doing great, and we are having a great time with him. As I’ve done with Emily every year, I made a video of Kevin’s first year. I plan to put it online somehow so if anyone wants to watch it they can. Thank you all for continuing to care about Kevin and his progress!

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August 2006

We will start with the latest news first - Kevin is finally getting his first tooth! He’s been a lot more fussy lately, and we wondered if he was teething, then finally felt it today. He’s getting ready to crawl, rocking on his hands and knees. He can roll around very well to get to most things he wants, but he gets frustrated when he tries to go forward. He just hasn’t put all the pieces together yet to take make that first move. He’s also waving now, and thinks it’s fun and silly to wave at new people he sees. We got a pull-behind bike trailer a while ago and he’s now big enough to ride in it, which he likes quite a bit. We just took a bike ride this past weekend with grandpa Rich and Karen and he went 12 miles with no complaints.

Now that’s he 9 1/2 months old, we’re thinking that it’s about time to stop spoiling him rotten and teach him what “no” means! He likes to slap people in the face and knock the bottle clear out of our hands when he thinks he’s done eating. He has quite the little attitude, and when we tell him no he looks at us kind of like “who do you think you are?” We’re sure he will catch on, though. Or at least we hope. He knows his mommy doesn’t want to hurt his feelings, and he uses it to his advantage. Smart boy.

His last doctor visit was his 9 month checkup at the pediatrician. He weighed 17 pounds and was 28 inches long. That’s 50th percentile for height and only 5th for weight, so he’s a tall and skinny boy! The doctor was okay with his weight, though, since he gained 2 pounds since his 6 month checkup and grew so long. His next doctor visit is on the 12th with the cardiologist. It’s just an EKG and checkup, though (no echo), so it shouldn’t be too bad. He certainly won’t sit through an echo anymore, so they will all need to be sedated for a while. That’s quite a process. We also called in with his pacemaker check this week, which we have to do a few times a year. It’s a small device that we hook up to the phone and straps attach to his wrists. It’s much more difficult now than it was back at 4 months when we first did it, but luckily it’s not that often and we can manage it while he’s asleep.

He’s still eating okay, slowly moving up to new baby foods. He likes to suck on pickles and cucumbers and prefers fruits over vegetables. He’s at the age where it’s quite a challenge to feed him. He moves and wiggles and tries to hit the spoon as it gets close to his mouth, so feeding time often ends up pretty messy.

He babbles even more now and gets quite loud with his screams. He says “mamama” but we don’t think he’s really saying “mama” yet. He loves constant attention and even seems to “expect” it, since when we leave the room he’s very clear that he wants us to come back. The boy can scream!

He finally started sleeping in his own room a while ago too. After 9 months, it’s about time his crib gets some use instead of the cradle right next to our bed. He sleeps pretty well but still usually likes to eat once during the night. He still hates naps and hates being put to sleep at night, fighting it with everything he has until he just can’t keep his eyes open.

That’s all for now, we’ll try to update again after his next doctor visit.

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July 2006

It’s once again been a while since the last update. Kevin is now 8 1/2 months old and doing well! He hasn’t had any doctor visits in over a month, and we haven’t had any troubles or concerns.

Getting Kevin to eat has always been a battle for us, but on July 5th it’s like a switch went off and suddenly the boy loves to eat! We estimate he’s over 17 pounds now, and we no longer have any trouble getting him to eat. In fact, he screams and cries if he doesn’t get his bottle quickly, and tries to grab at it to get it in his mouth when he sees it. He never had that kind of enthusiasm before. So we’re really thankful that he’s come around and seems to love food now - and he almost never spits up anymore, either. We completely stopped keeping track of how much he eats each day quite a while ago, so one of our big stresses to date - getting him to eat and grow - is so, so much easier now. What a relief!

He’s starting to show interest in crawling, and he does roll over in both directions and is starting to use his rolling to move around the room a little. He gets really mad when toys are out of his reach, but hasn’t quite figured out how to intentionally get to where he wants to go yet. He’s quite the grabber, too. When he sees something he wants, he goes full force to grab it. He’s especially fond of remote controls!

He started clapping a few weeks ago, and is just starting to pick up on “so big”. He babbles quite a bit and makes new sounds every so often but he doesn’t seem to be as vocal as Emily was. Although his vocal chords look pretty normal now, we still have to wait and see if the problems he had earlier will have any impact on his speech development or the sound of his voice. Lately his new trick is to spit and blow bubbles, which he thinks is hilarious. He loves to laugh at Emily, and he thinks it’s hilarious to watch the dogs fight. He’s at the age where he seems to be just starting to “get” humor and silliness, although sometimes he’ll just stare at us like we’re idiots.

He took his first swiw on July 4th and has been in the pool again since. He likes to ride in his little boat and kicks his legs to splash the water, so it seems like he enjoys it quite a bit.

Although he has his difficult moments, he’s still a very easy-going baby. He rides well in the car, he’ll sit and play with his basket of toys for a while, he likes to watch Baby Einstein every so often, and doesn’t mind sitting in his stroller outside and watching us do yard work. After a long while of sleeping all the way through the night, he’s recently started wanting a bottle during the night. We don’t mind, though, since his increased eating will help him grow to be a bigger boy.

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June 2006

Kevin is now 7 months old!

The Heart Walk last weekend was a great experience, and we would like to thank everyone who donated in honor of Kevin. Before the walk itself, all the heart disease survivors wore red hats and got red balloons and walked the bases of the baseball diamond. Kevin was the youngest survivor there, I think. It was pretty neat, to see so many people whose lives had been touched by heart problems - either their own or of someone they loved. I’m sure everyone had their own stories of pain and triumph, just like we do, and to see a huge group of strangers all coming together because of a common experience was neat. We stood by a group of other kids of varying ages who were all dealing with their own heart problems - many of them were patients of the same pediatric cardiologist that we go to. It gave us more hope, to see little survivors who were 3, 5, 10, etc. They and their parents were also proud to be there, glad to show that they had beaten the odds. When we walked off the field to start the walk, the entire audience was standing there clapping as all the survivors walked by. It was kind of moving, as it brought back thoughts of just how far Kevin had come.

Overall, Kevin seems to be doing very well. He still doesn’t like to roll over much but he’s getting more alert and interactive every day. He’s working on sitting up unassisted, and can do it now for almost up to a minute. We’re really seeing changes in him faster now, which we suppose is normal for a 7 month old! At his latest doctor visit he was just over 16 pounds and almost 26″ long. He seems huge to us now and even has some baby fat rolls now, despite his continued annoyance at us trying to feed him. The boy just doesn’t like to eat much and I think he’d eat twice a day if we left it up to him!

He’s much more interested in his “exersaucer” now and is aggresive at grabbing for things he wants and playing with them. We’ll try to put a video of him up soon for those who haven’t seen him in a while, to show what a goofball he is. He’s one of the happiest babies either of is has ever known. He smiles and laughs at everything and everyone. He loves to wake up in the morning and hates to go to bed at night. His big blue eyes are so cute, and his smile is contagious. He’s such a fun little boy.

His two most recent doctor visits were to the otolaryngologist (ear, nose and throat) and the neurologist. The first looked down his throat with a small camera again to check his vocal chords. Since he makes a lot of sounds now, we were hoping for good news but were not going to be upset if things weren’t perfect. Everything looks good, though. His left vocal chord had been completely paralyzed last visit, but this time it was moving well and almost normal. They were very happy with it and said he shouldn’t have any problems in the future. We won’t have to do another checkup until 1 year. This was a big relief, since that affects his vocal development as well as his ability to eat, so we were very pleased with the progress.

His second visit was just a general checkup on his development to look for any signs of brain injury he might have received during his hospital stay or syndromes which might not have been apparent until now. The doctor looked him over pretty well and tested some of his motor skills. He said he looked absolutely 100% normal and saw no signs of any developmental problems. We had been a little worried since he seemed to us to be favoring one side over the other a while ago, but now everything appears to be back to symmetrical and he’s doing well. The doctor said he may be a little delayed in crawling and walking based just on his flexibility, but said this was prefectly within normal range and totally unconnected with any problems he’s had. Some kids just do that stuff later than others.

Tomorrow we have Kevin’s first sedated echo. They knock him out with medicine so he will lie still, then take an in-depth look at his heart function with the ultrasound. They’ll be checking for any changes since the last echo and doing a general analysis of his heart’s condition. It always makes us a bit nervous to go to echos, because at any time they could tell us that things look worse rather than better. But Kevin has great energy, never looks blue or gets tired from mild exercise, and is growing and developing very well. So we’re pretty confident that things are still going well.

A week from tomorrow we head back to Iowa City for his first official pacemaker check. This is the first time we’ve had that checked and we’re not sure exactly what they will be doing. Again, there are no signs of any problems with its operation, so we don’t expect any surprises - but its still makes us a bit nervous to return to Iowa City and to do a new checkup!

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