Wednesday, August 20, 2008

Busy day

What's the deal?? Reagan was up again last night at 3:45am...wide awake! Unfortunately she was a little more whiny than the night before. We were up with her for about an hour and a half and Mike suggested I try giving her some formula and as soon as the bottle hit her lips she was out!! Little turkey! We went in to the ophthalmologist this morning (Reagan was super well behaved in spite of all the seizures) and the consensus is that the cataract has worsened (in the 5 wks since her last appt) and must be removed. More surgery. While I hate the idea of putting her through more surgery, I'm encouraged by how much better her vision seemed after her first cataract surgery. The doctor would prefer to do it in the next couple weeks, but we're supposed to be in Austin doing HBOT. She said that it should be alright to push it back a little but she wants us to watch her left eye and if we notice that she's not using it or it seems to be crossing all the time...then we'll need to come back sooner and move the surgery up. So I went ahead and scheduled it for Sept 23rd (giving us 4 weeks in Austin). The doctor is not that familiar with HBOT/cataracts (there are not many studies on HBOT alone, much less the effect of HBOT on cataracts) but she said that the cataract needs to be removed anyway so she thinks it should be OK. Despite all of my failures lately in the fight to get Reagan services, I think I had a small victory today. I finally got my hands on a Leckey Squiggles seat for Reagan to try out. It's strange how things work out, but it was my friend in CA whose daughter already has a Squiggles seat that was able to give me the number of a rep in Houston that could bring one out to us. Over the last 2 weeks or so we've tried a couple different options with her but I still really wanted to see this one in person. (Not to mention I'm extremely indecisive so it's hard for me to make a big decision like this especially without seeing all of the options!) And now that I see it...I like it. Her therapists are going to stop by tomorrow to give me their opinions on it, but it looks like this might be the one. (I'll post a pic tomorrow.) I spoke with the neurologist and since her seizures haven't gotten any worse (they haven't gotten any better either) we're going to go ahead with the increase. This is the final increase up to 1000mg 2x/day. We're going to do it gradually...so we'll just increase the PM dose over the next couple days and as long as she's OK with that we'll increase the AM dose. I'm a little nervous about this since the last increase definitely made them worse. Please keep her in your prayers...we really need this to work!!

1 comment:

Heather said...

Tera,your life is so full. So full of decisions and different direction.I wish often I could take some of the load or make a decision for you or have the answers.Instead I am a listening ear always. A sounding board.You are doing an amazing job. I have said it before and it bares repeating.Regan is so blessed to have you as her mom. Daily,all day sometimes ,you are seeking out what is in Reagan's best interest.Fighting for her because that's what parent's do, who love their children more than anything else in this world.Our prayers continue,waiting on Reagan,s miracle.