happy being trevy

Thursday 11/28/2007 93. Thats how many hours it's been since your last seizure. Even though daddy & I are happy - we're too informed to be naive. So many little ones have had success - until... Until their 93 hours was up. Your Bibi says, "93 hours is 93 hours". And she's right. It's been 93 hours of no chance for any damage done to your brilliant little brain. 93 hours without that confused look masking your beautiful eyes. 93 hours of you feeling so good you can't help but flap your arms & legs in glee and giggle at Toby. We just pray that our 93 hours doesn't end with an until. We love you sweetie...

Thursday 11/23/2007 Your first Thanksgiving was spent in the hospital. We felt so calm this time during the admitting process. It was strange. I still hate the thought of being in the hospital. And I hate that we have to give you the shots. I wish there were another way. But right now this is it, honey. Your daddy says it's more the holding $5,000 in one needle than the actually pricking your leg! But he's been so strong for me - for you. He thinks if you were big enough to make up your own mind that you would chose ACTH too - side effects shmide effects. That it's worth the risk at a chance for a normal life. But no matter what path God chooses for you, we love you. Fiercely . Friday 11/24/2007 Daddy gave you your shot for the first time today. I had to leave - but then I was torn up with guilt. I left because I didn't want to make daddy nervous. And I couldn't bear to hear you cry. The nurses had to take blood from a vein in your head! Barbaric! But you're so...

Wednesday 11/21/2007 Today was by far the most emotionally exhausting. You are being admitted tomorrow and your daddy & I are torn to pieces about that. Then on top of everything daddy has been on the phone all day fighting with our insurance company. They don't think you're worth paying $26,000 a vial! But I just need you to know, honey, that your daddy & I will fight with every breath we have to make sure you are taken care of. We love you ferociously ! Every time you have a seizure my heart chokes me. I hate to see the look of confusion in your eyes so I just snuggle you close and tell you that I love you. I do love you. I love you Trevor. I have seen your daddy cry more today than ever. It kills me inside. We love you SO much, Trevor. You're our little man. Our baby!

Monday 11/19/2007 I cried as you were being admitted. I felt like if they just didn't put that little wrist band on then maybe we were just dreaming. Maybe it was all in my head. But it wasn't. And that was such a crazy day. We got upstairs and I fought tooth & nail to have an MRI done before we started treatment. I just needed to have another confirmation that ACTH was the right thing for you. I was scared. In the middle of everything the doctor decided to give you a TB test - since your mommy & daddy live crazy lives as missionaries in Tanzania. That would give me my wish since they had to wait 48 hours to read it! Daddy stayed with you in the hospital that night. I slept at the Ronald McDonald House. Gosh, I never thought I'd be there! The R-House is a great resource - but for other people - not people like us! I slept with my Bible - I can't remember the last time that happened. I've been reading Psalms 139 to you everyday. Tuesday 11/20/2007 You finall...

Beautiful Trevor. You are my sweet little boy. I can't imagine loving you more - I think my heart would burst. This is a journal of how your life unfolded from the day we found out you had IS... Monday 11/12/2007 You had your 1st cluster. Daddy & I didn't know what it was - and you looked so cute that we laughed. You were just 7 1/2 months old. Tuesday 11/13/2007 Your clusters continued. Inwardly, I was freaking out but outwardly I didn't want to be "that" mom - you know the one who's crazy insane about germs & her kids getting sick. I wish I could take that back now. Wednesday 11/14/2007 You, Toby & Bristel had an appt . for flu shots. I told Dr. E about your spasms. He thought it might be reflux and gave me some samples of soy formula to try out. Thursday 11/15/2007 Daddy was in DE packing equipment & stuff onto a Tanzania-bound container. Our tickets were booked for December 5 th . We had no idea how dramatically our lives were about to ...