Kevin is now 5 months old! He started rolling over a couple of weeks ago but isn’t quite an expert at it yet. He gets very frustrated being on his tummy and sometimes figures out how to roll over, but sometimes just gets mad. Just a few days ago he started getting up on his knees, so maybe we’ll have an early crawler? He started eating cereal this week but most of it gets on his face, of course. He’s also laughing out loud more and finding everything funny. One of his favorite things to do is to jump in his jumper. He jumps like a wild man and thinks it’s hilarious. We took this video (4mb) of him going nuts. He’s finally started to take some interest in the baby einstein videos he has also, but he doesn’t usually have enough interest to make it through a whole video.
With the help of Joanna, Brent, Emily, and Kristel we made a bunch of blankets to take back to the PICU in Iowa City when we were there for our last appointment. They appreciated them a lot and were excited to get new blankets to put on the beds that night. We will continue to do things for the children’s hospital in appreciation for the care they gave Kevin and for the families who are currently experiencing some of the same difficulties that we did.
About 2 weeks ago everyone in our family got sick, including Kevin. He had a cold and cough and was a miserable little boy for a while. When he didn’t get better for over a week, we took him to the pediatrician just to make sure that there was no concern about his heart or infection. He said everything looked fine and he just had a normal run of sickness, so that was a relief. He’s still not totally over his cough, but now he’s eating better and acting more like himself so things are starting to return to normal.
At his last weigh-in, he was 13 pounds 8 ounces and 25 inches long. His weight didn’t increase as much between visits because he was sick and just not eating as well as normal. But he didn’t lose any weight, and that’s the important thing. The doctors seemed fine with him just gaining a little, considering that he was sick.
Last tuesday we had an appointment in Iowa City with the dermatologists to check on the spots he has on his back and a few other places. The dermatologist here didn’t know exactly what they were so he referred us to Iowa City - and they immediately knew exactly what it was. They identified it as something called Urticaria Pigmentosa, which is a form of Mastocytosis. Basically this means mast skin cells accumulate and form spots. These same cells release histamine which makes them red and possibly itchy. They can also blister over when irritated. This is kind of a rare thing, with only about 200,000 cases in the United States. It’s unrelated to his heart conditions and isn’t tied to any other syndromes or anything. It looks like he just got another dose of bad luck with getting this too. In infants and children, the spots usually disappear by early adolescence and don’t leave any scars. Luckily most of them are on his back with just a few small spots on his face which we hope don’t get any worse. He has enough to deal with! They shouldn’t cause any medical problems, though, except for some itching which can be treated with antihistamines. So far we haven’t noticed him being irritated by it at all. Dawn was pretty upset by the news and the potential that he has one more thing to worry about in his life, but at least it’s not life-threatening and they should eventually go away. We can deal with that.
While we were at the hospital and facing a potential heart transplant, the importance of organ donation became even more clear to us. April is National Donate Life Month, and we would encourage everyone to visit DonateLife.Net to find out how to become an organ donor.