Well Ty isn't doing well.
We thought we had turned the corner but it looks like we are going around the corner and going back even further.
He is stooling so much he is in pain from the redness and swelling and constant stooling. His skin has begin to roughen again and appear burnt. Again he looks like he is only a month out.
My heart is breaking as reality has hit me today. Two years immune suppressed. You can only keep them from getting deathly infections so long. Reality hit me today knowing the odds are against us with so much wrong. He is so small I fear I will hurt him. When you are a first time mom you wish your baby can stay a baby forever, I dont. I want to see him grow. He should be playing, running and getting into cabinets. I wonder what he would look like if he was the size he should be or matured the way life intends but this disease has prevented him from.
We may lose the house. We are so far in debt it would take a miracle to pull us out.
Boys are doing so so. Bored is most of their days. Up all night sleep all day.
Bob is not himself and seems to just do what he has to so he can go to bed in hopes of waking up to better day.
Me? Depends on the day. Yesterday I was ready to conquer the world. High on love, my kids, family.
Today? I'm mad he is still going through this. I accept he has SCIDS, I accept life was not normal for us for two years. I dont accept the torture he is being put through. He has served his time let him have some life. Let him enjoy life. I want this god damn GvH to let up so he can learn what it is like to not hurt all the time. I worry where this financial tie down will take us. I can't even afford to put them in school Tuesday. Sigh he money worries me, but if we can't pay we can't. Today my worry is Hoping I still will be raising three boys. I can't lose him. I just can't. I know it happens and its awful in any case. But please not my Ty Ty. Please
- posted by Peg Kay @ 14.8.05