Thursday, January 28, 2010
Tuesday, January 26, 2010
Sunday, January 24, 2010
I was grateful for the enormous van- everyone slept pretty well! We arrived in Tampa around 7am, at breakfast, then drove to the beach! We were all veryexcited to shed our shoes and put on crocs and sandles!
We stayed the night in Tampa, then drove to Orlando this morning. Josh was glad to leave Tampa. After a....bad experience with one of the toll booths, Josh used TomTom to try to avoid toll roads completely on the way back to the hotel last night. Apparently Tampa has done some major road construction that TomTom did not know about. Well, daddy may not have been happy, but the kinds enjoyed the unexpected trip to the airport!
Friday, January 22, 2010
Our countdown is just about over... Mickey Mouse has almost reached the castle....
We plan to leave after school today. While I cannot say I am looking forward to the car ride, I can't wait to get to warm weather! (Yes, it is supposed to be nice!) Please pray for our safe travels!
Tuesday, January 19, 2010
Having my family here is like a pre-vacation vacation!
We get to enjoy their company of course, and I get to enjoy the extra sets of hands to help manage these kiddos!
I especially love how they help wear them out- although I am not sure who was more exhausted after Grandpa's horsey rides!
(Is that a smile or is he yelling for help?)
It's not all wrestling... they do snuggle occasionally!
The kids enjoyed one more Christmas from Nana and Bump!
Though it seems Marcus is ready for any kind of crashing, as he models his new helmet for us. (Perhaps we should make him wear it to bed?!)
Wednesday, January 13, 2010
Today has been spent simply enjoying having the family back together again. Even the boys have been good today. I always thought Lorraine was the kid who brought peace to the siblings, but Aggie? I think I figured out what's going on with that. The past two days, the boys have been just milling about, bored, and causing trouble... almost like they just needed to find some action. Now that Aggie's back, action is everywhere again! It's running back and forth through the house, trying on dress up clothes, and dancing on the couches like it never left!
Tuesday, January 12, 2010
She will have to have an MRI every three months and appointments at Cleveland every six months. They want to hold off on the Felbatol wean for another six months, just to make sure she's doing fine.
When I talked to her, she told me about the stickers she got at each place, and the new buddy or two, and the snow, and the food she ate... no complaints, as always she is "pretty good!" When I told her everyone misses her, she said "when I see Rainy and Seth and Eldon and Mommy I'm going to give everybody a big big hug!"
After that they will see neuro-oncology at 1, Dr. Wyllie (epilepsy) at 2, and Dr. Bingaman (brain surgeon) at 3. While they will not have results from neuro-psych (that will take a few weeks,) they will have the MRI and EEG from yesterday to work with. So we expect to get some insight into how she is actually doing now and (we hope) some sort of guess as to her future.
At home today I am a bit on-edge of course, sometimes on the edge... let's just say my house is getting quite clean today. The boys are positively bouncing off the walls, and they got up at 545! Absolutely everything I tried to do with them today turned into wrestling in less than three minutes. So finally I sent them to their room to wrestle... of course, they did not want to do that!
Monday, January 11, 2010
They are heading back to the hotel now to relax, enjoy a lunchable dinner, and hope the pool is fixed. If it is not, Mary Anne had a suggestion: Aggie ought to contact Marcus to find out how to make the bathroom into a pool!
Unlike last time, she is aware enough to get a little nervous and emotional about the whole thing, especially when she is sleep deprived! So this morning before the MRI was a little rough according to daddy, but she sounded just fine when I talked to her just a few minutes ago. She was all excited telling me about the fun she had eating ice cubes at the hotel last night! I asked her, "Did you go to the hospital today?" She said, "Yeah I go'ded to the hospital... and daddy turned on the TV there and Handy Manny was on! And then Handy Manny got over and THEN Mickey Mouse was on! And THEN Mickey Mouse got over and another show was on!" She didn't even mention the MRI- thank God for powerful medicine!
Her belly is now happily full of pancakes, and she's going back to hotel to do who knows what until the next test- the EEG- at 1:30 (eat ice chips probably!)
Sunday, January 10, 2010
Tonight she is supposed to get 2-3 hrs less sleep than normal to prepare for her EEG tomorrow. Before the EEG she is also scheduled to have an MRI (8am tomorrow). We do not expect to find out anything until at least tuesday.
It seems like a lifetime ago since we were in that place with her for her surgery. Just thinking about it brings back quite a bit of that stress and worry- I remember the very morning before her testing began she had ten seizures and it was not even 8am, then before we walked out the door she fell off her chair on her head having yet another one. But I also remember how amazingly capable the medical staff is there, and just how incredibly far she has come in six short months. God was faithful, He is faithful, and He will be faithful no matter what comes.
Please pray for safe travel, and of course, good test results!
Jesus, please watch over your little lamb!
Saturday, January 9, 2010
Tuesday, January 5, 2010
No snow to speak of here (at least until today!), but one night Josh and I needed something fun to do, so we thought... HEY, let's get our four kids bundled up and go slide around on the pond! Amazingly, nobody broke anything, not even daddy! (Don't worry the ice is plenty thick!)
Today we have our first snow day... I got up this morning and could still see the grass and the sidewalk, but apparently Hoosiers cancel school even for the threat of snow! So cancel they did, and it has been snowing all morning. Finally the grass is covered and it actually looks like winter! I am just about to get the kids bundled up to play in it- it might actually be enough to get out the sleds!
More later, they're bringing me coats and hats!!!!