Happy New Year!

I finally got my computer running smoothly again so I can now post from home. It has been pretty crazy but we are starting to get the hang of things and I feel slightly more under control. While things are much better it is still amazing how buys it can keep us. For example, I calculated that we use somewhere in the neighborhood of 45 syringes, of various sizes, in a 24 hour period. This means that if we are too tired to wash them one night, the next night we have about 90 to clean. Needless to say we have a lot of medical supplies and they take up a lot of space.

We got a call from the doctor shortly after my last post. He gave us the results of Katelyn’s oxygen study and she is now completely off of the oxygen. It is so much easier to move around the house now. At first it was strange to see her face without the canula attached. It was like seeing someone who you have never seen without glasses for the first time without glasses. She is as cute and feisty as ever. Her smile is very charming and she smiles often. She still isn’t growing as fast as the doctors would like but there isn’t any real cause for alarm. She is still on a handful of medications but other than that she is doing well. Of course, although she is five and a half months old, she is acting like her adjusted age of two and a half months. She seems to be doing all of the things she should be doing at her adjusted age.

We had to replace Brandon’s NG tube 6 times (3 times a piece) in the first 4 days he was home. They can last anywhere from 10-14 days, if he doesn’t pull them out. We’ve tried to really tape it down well this time and so far it has lasted a lot longer. I hope it lasts because he replacing it so often seems to really have irritated his nose. His nose was a little bloody after the last couple of tube replacements. He has also been a little congested and this affects his ability to breathe. Because of this congestion his oxygen needs have gone up a bit lately over the last couple of days. However, today we to a replacement for his tank and he seems less congested. We were able to turn down his oxygen a bit more. He is eating really well in general, much better than he has every done. He still has ups and downs and we have a while before we won’t have to use the NG tube. He certainly has a different personality than Katelyn. He seems much gentler and less feisty. You can even hear the difference in the sound of their cries.