I feel like I'm writing the same thing every time I write now. We haven't seen any results with IVIG and we are, for lack of of a better word, disappointed. Can you tell I'm waning in my energy with all of this? (READ AHEAD AT YOUR OWN RISK.... I AM GOING TO RANT NOW!!!!)
I know I have to keep going, there isn't another choice, but I have so much anger in me to the point that I feel like I'm not myself anymore. Some days are better than others, and I know I can survive this, but this is with out question the MOST painful thing I have ever had to face. I can tell you why... I know what it's like to have someone you love be so sick and dying. I know that kind of grief, and although Dray isn't dying in the sense that we won't have his physical body here. I FEEL like he is dying in a different way. He is being taken away from me... he can't be himself, he can't interact with us and others with out great difficulty, he can't understand everything around him and grow with what he is learning. He is stuck inside of himself and can't get out. I remember my sister dying and just thinking that she can't go on like this because she was so sick. Watching someone suffer and not knowing how long you have to see them suffer was really painful. When she died, we were of course devastated, but it was such a relief to know that she wasn't going to have to suffer anymore. With Dray I have to watch him struggle everyday, and I have no idea when or even if it's going to stop. I know the seizures will stop at some point, but I have no idea what kind of damage will be done in the end of this. I have lived with this for several years now. How long do I have to watch him suffer? He may end up being fine or he may not be able to ever totally recover and have a normal life. Everyday I can't help the head games that go on in my head of which it will be for him. The torture those games play on me is what really gets to me day in and day out. I think I could come to grips with this much easier if I just knew what am going toward. I know what my end goal is, but I know the statistics on these things, and I am not naive to the odds Dray has. If I knew that spoken language was never going to happen for him, I could take that and run with it. Not that I wouldn't have grief over it, but I would know exactly what his capacity is. Or, if I knew he would be fine eventually, I could have peace with knowing that he will be able to communicate someday. The short term communication issues would not bother me as much. But, this in between garbage of a 50/50 shot of making it...torture!! I will say that I am not totally with out gratitude. I am aware that I have an amazing son. As frustrated as he does get at times he copes beautifully with it. He can still talk! Demands on him to communicate are only going to get tougher, so I pray that he can remain so sweet and wonderful. Sorry for the drama. I have to let it out, or I may go completely insane!
So, here are the options Dr. Thompson has put out there. Most likely we will try an intense steroid approach where he goes to the hospital for 3 days straight on an IV with high doses of steroids. He would have 3 days on the IV 4 days off, and repeat that cycle 3 times. So, that means 9 days at the hospital with an IV in him. I hope they have a mental hospital to check me into when we're all done. Because, for those of you who don't know, Todd is deployed to Quatar until April 13. How will I do this with 3 kids? A very supportive family....thank goodness for them. I would never make it with out them! Dr. Thompson is still considering just trying the oral steroids everyday, again. We will make a decision on Wednesday, he just wanted more time to get as many opinions as possible... to make the best decision possible. So, I'm glad I got my ranting out of my system. Don't worry about writing statements of sympathy... I will spare you all of that. I know you are all praying and praying. What more can you do? And thank you for doing just that... it means a lot!
