happy being trevy

12/30/2007 So, Trevor, your first year is going out with a bang! Last night we were rushed to the ER (again) because of a fever. We didn't get home til' after midnight - which totally lets us off the hook for staying up tonight! Then I checked email to find a response from Dr. Chugani - I took his news with alarming calmness. He says you have one of two things. The good thing - a benign brain tumor . The bad thing - cortical dysplasia which is a malformation of the brain that comes with the wonderful attachment of retardation and a dollop of developmental delays. Both require surgery as treatment. You're not even a year old yet and we're already talking about brain surgery ! It's crazy when our prayers for you are " please, God, let him have a brain tumor !"

Christmas Eve - spent in the ER because you had a really high fever. Note to you btw - you're lucky you're so cute cause that was NOT ! Christmas Day - your sister was super sick. The hospital called - your strep test came back positive. You & daddy hauled it to the ER. Again. The day after Christmas - we gave you your last injection of ACTH! Hip hip hooray! You finally found your crawl groove. Just when I was starting to let my drama queen persona take over too! You started saying "mama". It's been over a month since I've heard those sweet words spill from those even sweeter lips! You laughed while we were playing catch. It was the first time ever! Divine! I only cried a couple-ah times. Couple-ah dozen that is. You looked really cutsie in your Christmas clothes. Bristel has claimed all your new toys. Along with her own. Your face shows how you feel about Toby. Over the moon! I told you I loved you last night. And that afternoon. And that morning. And th...

12/25/2007 After having spent Thanksgiving in the hospital I was almost desperate to have a normal Christmas. Well...that SO didn't happen. Toby woke me up with the news that your sister was running a fever. When she hasn't been throwing up - she's been sleeping. She doesn't even want to open her Christmas presents! Then the hospital called. We had taken you to the ER yesterday because you were running a high fever - and your meds lower you immunities making little sickies into monster sickies! So after much poking and prodding and tears (mine btw)- they finally let us go home. I was so relieved. Then they called today - CHRISTMAS DAY - for crying out loud. One of your cultures came back positive and they needed to re-poke & prod you! Fortunatly because your fever is down today- and you're in a much sweeter disposition - after conferring with your neurologist, metoboligist, pediatrician and whatever other special doctors needed they finally let you come home! ...

Bristel is anxiously waiting for the arrival of Christmas "Steve" (as opposed to Christmas Eve)! No Santa in our house...just Christmas Steve who she says looks just like the Blue's Clues guy! When Toby's basketball coach asked the kids during practice what tehy wanted for Christmas - Toby had the best answer - "whatever I get"! Putting the presents under the tree proved to be quite the motivator for baby Trevor - we cheered him on as he crawled for the first time! Every new skill he develops is a HUGE milestone! Wishing all the very merriest Christmas yet!

12/22/07 Yesterday was incredibly exhausting and by the time Dr. H called I was too tired (and cranky) to even try to post. (but thanks Grams for making me feel guilty! :O) And sorry to all the friends who may have checked in hopes of knowing where we're at in this whole mess... The VEEG (video electroencephalogram) was uneventful - you slept which was essential to a proper read. And I've gotta say - you make EEG-garb look darn tootin ' cute! Daddy & I took turns staring at that stupid machine until we had migraines! I have a feeling that before all is said & done we'll be pros at reading those scribbles! Dr. H didn't have a chance to call until late last night - and the news wasn't great. It wasn't as yucky as it could have been - but it wasn't great. She said there was no seizure activity during your awake cycle - which is improvement . But during your sleep cycle there were electrical charges coming from your left temporal lobe - and she is ...

Thursday 12/20/07 You've been in remission for just over 3 weeks . Even though we know the odds are against us - I think Daddy & I had secretly begun to believe that you're one of the miracle babies. And we started breathing a bit easier. So I have no explanation why I've been so...so...weepy...these past few days. I think it's because you've been acting kinda funny. Kinda like you did right before all of this began. You're not sleeping well. Kinda cranky - which is totally not like you...at least not like the you before IS. Just off - that's the only way I know how to describe it. And then today when your head dropped like your neck was made of noodles instead of muscles - I couldn't breathe. I was trying to convince myself that it was just my imagination. But you did the noodle neck 7 times in a row. And every u-tube video I've watched of other babies went screaming through my mind. Daddy was there too - and when our eyes met I knew it wasn...

12/13/2007 Your 2 nd EEG - I wasn't looking forward to it. And yet I was. I wanted - needed - to know if you are still having electric charges surging in your little brain. Every little grimace you make. Every little movement. Every little sleep interruption. Every little bit of crankiness. Every little anything - makes our hearts drop. That's the thing about babies - you can't tell us if somethings wrong. Ugh! The snow started before we even made it to the hospital. It wasn't supposed to come til' later. We checked in & headed upstairs to the "mental development" ward. I wish to God that we didn't know the way. But it was all too familiar. And then the nurse came in the room. The same nurse who told me everything was going to be okay! I wanted to scream at her that everything IS NOT okay - but I choked the words back. You hate - with a passion - being all connected to those electrode thingies. And I don't blame you! It's scary even for...

Wednesday 12/12/07 ACTH is scary in a major way. Not only does it cost an arm & a leg - the side effects are awful things like - crankiness, high blood pressure, GI bleeds, sugar diabetes, enlarged heart & lowers your immune system to that of an AIDS patient! That's part of the reason why we were so scared to use it. I told daddy recently that I no longer see people - I see germs with legs! So last night when my throat started hurting - I kept hoping it was my overactive imagination! But it persisted until I finally gave in and asked Grams to take me to a walk-in clinic. And sure enough - before the timer even beeped - I was told the grim news. I have strep throat! So great - now I'm the germs with legs!

Sunday 12/9/07 14 days SF now! And we're celebrating every one! You've had trouble sleeping lately. I'm not sure if it's the meds - or just your natural curiosity? You are quite nosey! I've enjoyed rocking you though, my little snuggle bug. I love the way your little eyes droop when I rub your head. That's always been your thing - ever since the day you were born! Saturday 12/8/07 You were exceptionally happy today! Friday 12/7/07 You had a date with Grams tonight. She says you were too cute when she was rocking you to sleep. You'd be all snuggled up and she'd think you were sleeping - but when she looked down at you you'd shine your 2 1/2-toothy grin at her. Your Grams loves you! You saw your first snow too! You were already jammied-up...but I wanted you to go out in it so I wrapped you tight in a coat & blankets. The joy and wonder on your face made us cry! Daddy & I took your brother & sister to see Santa - and finish up Christmas shop...

Today starts the weaning process - which is very intense for me. I can't help but roll my eyes at myself and how I went kicking & screaming into ACTH land - only to have it work w/o major side effects! Now I don't want to leave. It's like a security blanket - and I don't want to lose it! Trevor's spasms slowed in intensity almost immediately. It was like we watched them die. And now that he's coming off the meds I'm afraid they didn't die after all. That they're just in hiding - waiting for Trevor's little mind to be vulnerable again. And it's very scary. And I've seen scary. I've lived scary! I've held my feverish babies sick with malaria 3x each - that WAS scary. I've shared the love of Jesus with Muslim children while group of militant looking men sat outside listening - that was hair-raising scary. I've prayed for safety as the only thing between the thieves & our family were the bars on the windows, a scraw...

Toby has such a tender & pure little heart. And this is a lot of stuff for a six year old to digest. It's huge even for us. Tonight he prayed with his daddy for his baby brother. And this is what he said... "God, I know you're the smartest scientist there is. And I know you can show the doctors how to cure Trevor. So please will you do that?"

12/3/07 I remember showing Dr. E the video clip the day you were preliminarily diagnosed. I was watching his reaction like a hawk. When he left the room, camera in hand for his associate to view the video, I sat there feeling numb. Holding you. Hoping for the best. Dr. E doesn't tend to be dramatic - so the serious look gave him away. Trying to be glib - because that's what I do when I'm nervous - I said, "Please just tell me it's not Turrets !" He said,"It's not Turrets ". I was even more numb after I left the his office. He warned me not to read anything online - the information would be grim. But I couldn't help myself. I cried -bitterly- as I gave you your bath that night. I begged God not to take my baby from me. I knew you weren't dying. But I still felt like I was losing you. Like you being stolen right from my arms. Kidnapped. That night my dreams were haunted by babies being kidnapped - I was trying to help reunite them with thei...

Sunday 12/2/07 7 days seizure free!