2/9/11
Oliver was supposed to have his MRI today to check the growth of his SEGA (brain tumor in the foramen of Monro that has the potential to block flow of cerebrospinal fluid and cause hydrocephalus). Last night, the anesthesiologist decided he shouldn’t be under anesthesia since he has been sick so recently. I can’t help but be happy about canceling; I wasn’t super excited about having to get up at 4:00 am and sit in the hospital for 8 hours or so on my day off. We will have the MRI in 2 weeks. Oliver is doing a lot better today. Yesterday was tough for him. He still had his fever and was still dealing with his body’s reaction to the Ativan. I was away working, but Jadey was home with Oliver and the babysitter. Jadey said the baby spent the entire day alternating between screaming and sleeping. I have no idea how Jadey was able to do any work having to listen to that all day. It was a good thing it was so snowy yesterday and very few of my patients wanted to brave the streets, because that meant I had a lot of time to call doctors. The neurologist said I could bring him in for an EEG, but I decided not to since I think Ollie’s seizures on Sunday night were fever-induced. She also said we could increase his Topamax. I talked to Jadey, and he thought we should leave the dose where it was for now. So I guess that’s what we’ll do. Hopefully we made the right decisions to not bring him in for an EEG or to increase his medications! Somewhere in the past few months we realized that this is all a guessing game, whether you’re a neurologist or a parent. No more blindly following doctors’ orders for us!
People in our lives have been so amazing! Our friends and family were great when Oliver was just diagnosed, and as people are realizing how crazy things are for us, they are continuing to help. Jadey and I are so very appreciative of everything people have done. Getting us gift cards for restaurants, bringing dinner, cleaning the house, watching Oliver so we can go out, watching Oliver while we are working, and everything else. To everyone who has cared enough to help or to share kind words and encouragement, thank you so much. Jadey and I couldn’t do this without you. I am so thankful for the church that I am in right now. I know that if I went to a super-Christian church, like the ones I grew up in, that I would have left by now. I would have felt like a hypocrite going to a church like that and feeling the way that I do about God. I am glad to be in a place where I don’t have to pretend that God and I are doing okay in order to fit in. I know that I can share exactly where I am right now with anyone there, and no one will make me feel bad for thinking that way- they will accept it and let me feel the way I need to feel. It’s such a relief, because now, more than ever before, I need people like that in my life.
Ollie is doing pretty well today- happier, more willing to eat, and more willing to sleep. He had PT this morning, which went surprisingly well considering the craziness that has been this week! I have to confess, though, that I kinda bribed him by dipping his pacifier in pineapple puree several times to get him to keep working… He is learning how to crawl and is getting more and more interested in it, thanks to our awesome PT and to Jadey’s practice with him. We have OT at 3:00 this afternoon, and Ollie is sleeping now; hopefully he will be ready to go by then! I’m expecting the rest of today to be pretty uneventful, which will be nice.
On another super-cool note, some friends set up a team to walk for Ollie in the TS walk that is taking place in Northglenn, CO in May!!! Here is the team’s site if anyone would like to join us and walk:
http://www.firstgiving.com/process/teamarea/default.asp?did=137&TeamId=130918&EventId=106340
If you aren’t able to walk but would still like to help, you can donate. Here is my fund-raising page:
http://www.firstgiving.com/fundraiser/angela-hansen/step-forward-to-cure-tsc-northglenn-co
There are walks going on all over the country to raise money for TS research. Here’s a list of them:
http://www.firstgiving.com/process/teamarea/default.asp?did=137
There are a lot of exciting things happening with TS research right now, including medications that shrink SEGAs, decrease facial tumors, improve cognitive and behavior functioning, and more. Results from research with TS treatments are being translated to other types of cancers, and vice versa. This is really important stuff! We need to have this research conducted, because this is the knowledge that WILL benefit Ollie and others with TS and make their lives better.
