May 2007

May 15th, 2007 | by Mom and Dad |

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!