May 15, 2006 at 04:29 PM EDT

32 May 15, 2006 at 04:29 PM EDT
Hello everyone. Hope you moms out there had a great mothers day. Mine was very nice. We actually went over to Daves sisters house and it felt so good to be around family. I was so nervous with Simon but everyone was so aware and considerate of our situation and I know David felt so good to be with his family. Simon seems to be doing really well. Hes eating ok and although he is still getting up last night he awoke a bit earlier and went back to sleep better. So I"m hoping we are reaching the end of him waking up. We'll see. Hes becoming a master again lately at pulling out his feeding (NG) tube and I've been doing my best to stop him before he totally yanks it and then I have to push it back in. Hes a stinker.

I wanted to say that I actually had a pretty bad day on Saturday starting at 5:30 am. Sometimes I guess I have a hard time with the realization that the things we used to do so easily now need to be added to a schedule and times figured out who can go where and do what and that we can't all do it together. Not to mention we are realizing that things we dreamed on doing as a couple for our future are probably not going to happen anytime soon. I started to think about moms in general. Just how much we sacrafice and give up for our family and how some can do that so well without expecting anything for themselves or never allowing anyone to know that they too need things but just always giving. Daves mom does that and for as long as I've known her, has always done it. I hope someday I can be that way. I think women in general do an awesome job of keeping it all together with kids, work, the house and things that go along with it, not to mention meals and obtaining enough food every week to cook it all and never really setting time aside or certainly not without feeling guilty for doing it for themselves. Well at this time of year I want to put my hat off to those of you who can manage to do all of this and never feel you need or want something for yourself. WE all need to take care of ourselves and our families but without caring for us, there would be no glue for the family. As much as the men think they are the rock behind the family, we all know its us women who make it all work. So just a little, maybe unwanted, reflection from me that we all need to apprecaite what we have and do but also to take time to refuel and give ourselves something back.
Simon goes to clinic on thursday for vntrs and cbcs and a few blood tests the immunologist ordered to check on his immune systems function and things so we pray simons numbers are stable or hell I'd prefer marrs counts have doubled. I'll keep you all posted. I wanted to thank those of you who have made our girls feel so special with the gifts and things you've sent to make them feel like they are still a special part of our lives and that people are thinking of them too. Its meant so much to the girls to get mail. They get so excited to open it and see who its from and then they talk about it all week. So thank you for the smiles. Take care, Tracy