Well Happy St. Pattys Day. We ate chinese today, go figure. I just got done reading all the NEMO boys blogs. Some families haven't updated for a while. I have to tell you this disease is all consumming and draining and the ups and downs of it all really bring you down some days and its hard to pretend or be upbeat about it all. I know all of us families put on a pretty good front, like we are holding it all together, waiting for it all to be "better", but the truth is, everyday is hard. Every single day has worry and anxiety over the right thing to do, who to call for the answers you need while you sit in your house day after day because you can't expose your son to germs that could really affect his life right now. We do have fun at home, we do play and get silly and all of that but for me, as the mom, the care taker on the 24 hour schedule of monotony, it is really hard. I am not complaining or looking for pity I am just letting you all know, sometimes we don't blog because its too much to sit down and recount the events of the day after day "sameness" that Simon goes through. We thank God everyday for the engraftment of 99% and keep praying it holds strong and steady. Anyway, I want to keep up with the blog but there really isn't much going on that we haven't dealt with everyday for almost 2 years. We had some of Simons vomitting issues come on strong the last two days with vomitting to the point of dry gagging while I hold him over the sink first thing in the morning. Its really difficult to watch someone so small bringing up a 4 ounce bottle with such force. It really sets my mood. I hate to say it but it bothers me so much that I become crabby for the next hour after it happens. I try to let it go. Usually by lunch he will eat something, take a bottle and go down for a nap. He has alot of things on our schedule this week. We see the dental specialst on Monday, therapies two days, dermatology Thursday and Friday I register the girls for kindergarten. Hard to believe they turn 5 this summer. I really have watched them become little girls the last few months. They are wonderful and sassy. haha.
We are so thankful to be at the place we are with Simon. He is doing well with numbers and things and very spirited and busy, running all around and keeping up with the girls and chattering alot. Its so nice to see him so alive. We pray for continued healing and that we may soon be able to venture out into the world and let him see faces besides our own. We continue to pray, for Simon and all the boys who we have come to know and their families. God Bless Us All. I'll let you all know what the dentist says and post some new photos. Simons hair is coming back and hes really looking cute"er". Love Tracy and David