No, this is not a post about Stella's 1st birthday or her obsession with Baby Einstein at that age. It's about me not being able to sleep because I was lying in bed thinking about her illness and what we (our entire family) are going through. I received a text from our Pediatrician earlier asking me what Stella likes because she wants to get her a gift to take with her to Ohio. She remarked that Stella has really been through it and has been such a trooper. She's right and I wonder if the magnitude of it just kind of hit me this evening. I will say there were about 4 days in the hospital that were very scary and I cried a lot. The day of her surgery I cried almost non stop all day. I was afraid of what they would find in there and she was looking so bad at that point. During her surgery I had her t-shirt in my hand and I bawled into that t-shirt for like an hour straight. In reading the doctors dictations from the hospital I'm glad I didn't know then what I know now....like that mass on the side of her head could have been a rhabdomyosarcoma. That sounds bad...People have asked me how I have been able to talk about all of her medical problems without breaking down. I don't know...you just have to. I think the fast pace of our lives and two other busy children prevents me from having too much time to dwell on it. I'm bad enough about researching everything on the internet in the little bit of free time I do have. This drives my mom NUTS. Absolutely, there is scary stuff out there to be found and it can overwhelm you, but I like to be armed with all possible information. If the doctors haven't thought of it maybe I have or maybe I accidentaly came across it on the internet and I can at least ask. Since she was released from the hospital we have averaged 3 doctors appointments per week or labs, etc. something that required a trip to Tulsa, a needle, eye dialation, or a co-pay! Stella keeps going along with it because her mom, who she is putting all faith and trust in, keeps telling her if she keeps it up the doctors will figure out what has made her so sick. It helps that she gets to go swimming while we are in Ohio:) I think the only other person, outside of our family, who really gets it is Dr. Sood because she knows about all of the doctors apts that STella has, and how she can't go to school to see her friends. Sam and Shelby have been scared for Stella, jealous of the attention she's been getting, confused about what she has and how it will affect her. I know they will not be emotionally scarred because of the horrible abuse and neglect they have had to endure like eating store bought frozen pizza instead of home made pizza that I lovingly hand rolled. Or because they had to spend Easter with their best friends while we were in the hospital. Or getting away with murder because I'm too tired to deal with discipline. I joke, but I really don't worry because I know that each one of them has had their turn to be sick and have everyone jump at their every command...they forget so quickly. I hope that the tests we are running and our trip to Ohio will finally answer a lot of questions we have about this incident and what it means for Stella long term. I was told that there was some loss of her periphiral vision from the field vision test they did, but the Opthamologist deemed it unreliable because of her age. He said it would give us a basis for comparison at in the future. Does she have a dissolving blood clot in her brain? Does she have a clotting disorder? Questions that still need to be answered. My mom is worried about her swimming in the lake water this summer with her new ear tube, but it can't be any worse than swimming in a horse trough full of algae???? Can it? I do know that a mother's instincts are so powerful. 1 week before school started I had this nagging feeling that I needed to resign as PTO President for this school year. I couldn't really figure out why. Hank's dad passed away over the summer, so I thought things would be settling down. In September I had surgery. In October Sam had surgery. In December I had MAJOR surgery (unexpectedly) and then Stella got sick the first week of March just as I was getting back to myself. Good thing I listened to that voice that said "RESIGN NOW." In March I had accepted a job teaching Kindergarten for the remainder of this school year for a teacher who had a sick mother. The weekend before Stella was admitted to the hospital something told me to call the principal and tell her I had to quit. I had a feeling this was going to be more than tick fever and it would be a prolonged illness. I had never heard of pseudotumor cerebri in my life! I get very strong feelings about stuff and I have learned to act on them. My grandfather passed away (also unexpectedly) in March, while Stella was sick. He was like a father to me -very close. I went to see him the night he went to the ER. After he was settled in his room, and everyone left I had a very honest conversation with him about dying and what it would be like. He told me some spiritual experiences he had that were personal and private. Neither one of us held back and I'm so glad we didn't because that is the last time I ever spoke to him. That night I had no reason to think he wouldn't be home in a few days. The next day the feeling really hit when Stella started to get out of the car for school and started crying. I asked her what was wrong and she said "I don't even know I just got really sad." I knew. With maturity comes this ability to listen to those promptings and stand your ground without chickening out. Sometimes I have to help Hank with that. He has an inner voice - he just ignores it. He supresses it along with ALL of his feelings. He won't even listen when it tells him to eat the Mexican food instead of the Chinese. His answer is always the same "I don't care whatever you want." I'm getting off track here and turning into Dr. Phil. I guess I had to get some things off of my chest. I don't know if anyone even reads my blog, but I guess it's theraputic for me. I know there are typos. It's 12:40 a.m. and I'm not spell checking!