Look at this big boy face. He's not looking like a little baby anymore. He's still a peanut though. The dietitian came out and weighed him today and he was only 23 pounds, 5 ounces. I don't mind if he wants to be small. This makes carrying him around the house much easier for me. Lately he has just been chillin' out at home, staying away from the germs because we don't like the hospital very much. The only appointment we have this month is with the Pulmonologist and I'm moving all of the other ones for when RSV/spring cold season is over. It's just not worth the risk. On Monday we did take him to the hospital for a blood gas. We found a lab where we didn't have to wait in a lobby with a bunch of sick people. They got us in and out. His levels were high as usual, but remain stable.
Autumn has been taking a water color class lately. This was a great program for her while her brother was in the hospital. I'm amazed at some of the creations she's made. Here is my favorite one...the bird house.
And the flamingo...
Don't forget to vote for change to make rare diseases a priority in America at http://www.change.org/ideas/view/25_million_it_is_time_to_care_about_rare_disease.
Isaac's chromosome disorder is extremely rare and so far he is the only case we know of with the exact rearrangement. When we found out that he was born with this disorder we had many questions. The genetics doctor had very little information for us. You can't even imagine how frustrating that was for us as parents. Hopefully someday we will know more about it, but until then Isaac will have to write his own book. My saving grace has been my chromosome disorder outreach board. It has helped me feel like I'm not alone in this unique world.
If I don't blog for awhile, it's because I'm trying to figure out how to use my new camera. I still need to get a memory card for it and then I will be in camera heaven. I'm so excited!!