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!