I have no idea what my problem is lately. Getting online and updating is just not happening. I have written, yet not posted.
On Thursday I took Lily and Oli to neuro to bump up her VNS setting. That went well, we were told who our new neuro is. I am happy with the change, we've seen him several times. He actually said years ago he really thought Lily was a Rett girl and couldn't believe she had the negative diagnosis. It was actually the reason I started looking into CDKL5 again. We didn't see him though on Thursday, we won't until August 18th .. our 10th wedding anniversary! I'm about as certain as there are wild fires going on right now we won't be out of town at that time so why not celebrate going to the neuro. At that VNS appointment she said we could make this go faster by coming weekly instead of every two weeks. I gladly agreed, although it is a far drive and hellish with gas, we really want this VNS up to therapeutic level. I am fairly certain she is doing well because of it and seems so much happier. I really do think she is happier. Her crying spells have really gone down and we see lots more smiles. Also at that appointment she said even if we could come on Friday that would be ok, I said well we are actually going to be here for a cardio appointment so sure, we'll pop on by to see you as well. And she said great.
Andi Jane had been at VBS all week at church which was really nice. Two of my good friends were able to take her after VBS during the week and I was able to work. Bummed VBS is only a week!
Friday we went to Cardio at 8:50am (apt the day before was 8:30a!) They did an EKG .... back up... I mentioned her going to cardio a few months ago right? When I told her geneticists about the passing out in her stander it got us a free pass to see cardio! Yay! Anyway that appointment was finally yesterday. A very nice Dr. I was genuinely impressed. He said although he is pretty sure her EKG is normal for Lily, he wanted to make sure it was normal for Lily. I guess between the bumps there should be a wavy line and Lily's is flat. He said it could be totally fine, but would feel better seeing her EKG for 24 hours. So after being there over an hour (they bumped up VNS while there too) he sends us to the hospital for a .... crap I forget what it was called... holter. Yes, he sent us to the hospital to get a holter monitor. I'm a brain gal, don't know anything about the heart, just that it is fragile and we must handle it with care or it breaks.... hardy har har.
I was with Lily and Oli and Oli had practically bathed himself in the sink while I was talking to the dr. I figure quiet and wet beats dry and loud. I walk to the hospital, refusing to load up in the van just to unload just a few blocks away. So I am walking, holding a soaked boy, pushing my Lily through downtown hospital area. We wait in admitting for ONE HOUR! ONE HOUR! Then we sit with admitting for at least 20 minutes. I just thanked the Lord Oli is not Andi at 2 years old and we survived it. Everyone apparently finds Oli and his Justin Beiber impersonation very charming. Over and over again. Did I mention he can only say Baby, Baby, Baby Oh... da da da MINE... MINE...
Finally up to cardio where we WAIT again. Poor little old lady was going to have a heart attack telling Oli, no not in there, no don't do that. It isn't that I wasn't watching him, it was that she had a lot of rules I was unaware of.
FINALLY it took oh maybe 2 minutes to hook her up. Then we were out. They told us to take it off Saturday at noon. She is still in bed but I am curious to see how it all held up last night. She isn't what we'd call a sound sleeper so I'm not so sure. Andrew ace bandaged her up last night so she is probably ok. I just know mama does not have the patients to do that thing again so it better have stayed on. We take it off today and drop it off on Monday and unless she is on the verge of a cardiac arrest he said we won't hear from him for at least 2 weeks. There must be a note in her chart to tell mom how long something will take or else she will call daily until she gets those results. Smile.
I'll update I'm sure sometime in 2011... of course if it isn't normal I am sure I'll update sooner.
Did I mention her sleep study showed sleep apnea? We are waiting for appointment with pulmonologist now.
It's been a roller coaster of a week. Last weekend we were in Greer from Thursday to Sat. We were woken up Saturday at 1:30am to tell us there was a pre evacuation, my dad told us to hit the road at 4am. It pretty much sucked. We had to wake up the kids, load up and go. The sky was full of smoke. It was intense. No one slept on the way home...correction, none of the kids slept on the way home. Dad did. I drove because I apparently handle less sleep the best. Cheers.
My parents got evacuated on Tuesday and that was when we thought this thing is for real. I am not someone who stresses out for things unnecessarily. I choose my stress for real issues. I never thought those fires would ever really go thru Greer. Wednesday night we got conflicting reports, but the one I read said Greer was engulfed and I just cried. I cried like we lost someone, I thought our town in the mountains, our heaven on earth, our summer getaway was gone. We don't get the beach, but we get the mountains. On Thursday we heard only 5 houses were lost and my parents were all safe. I think by Friday we heard 22 were lost, but my parents were still safe. Now the winds are just insane and they are still in danger. I *think* the most damage has already happened, but with only 5% containment and crazy winds there really is no telling. Even if the houses hold up, who knows what we will be seeing up there. Burnt trees? It's just so sad. We've never been this close to such tragedy and it is hard just sitting, waiting, watching. We are praying for those who lost their homes and especially the other towns the fire has hit, will be hitting who don't have their summer home there, they have their home there. Their lives. It is devastating. Totally devastating. We pray for the fire fighters out there protecting what they can, they are doing a great job saving communities, this fire is just a beast though. It hops lines, the winds are just taking it and it is so dry right now. We pray for some rain, some calm winds. 100% containment. This Wallow fire can suck it.
Ok well that is what we all get when I lack in updating. Long posts. I have a newsletter for CDKL5 that I need to get out by July that I am really having a hard time kicking it into gear. But today is the day. I am getting to work. My juices are flowing.
Here are a few pictures of us enjoying Greer last Friday unknowing the evacuation was just hours away... and one of what we saw from my parents yard.
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