Home again home again jiga-a-jig!

September 19, 2009

Back in Fruita! Ronald McDonald House was great, but there's no place like home. I'm gonna try to give a quick recap of the rest of our week. The schedule I posted? We had 3 days that looked pretty much the same. Monday was kinda rough...figuring out the shuttle was easy compared to figuring out what all the initials on the schedule were and then trying to find them! I'm so thankful I wasn't on my own. It definitely took all 3 of us to navigate our way to different clinics and appointments. I would have been totally overwhelmed. Mom is the most supportive person in the world. Not to mention an excellent mediator for Lexie and I! By the time our days of appointments were done we were all ready to head back to RMH. Torie didn't get her usual naps, but she was a trooper! Kids are such better patients than adults. She'd get done with an exam and say "mo games?" Unfortunately, her great attitude makes me look really immature when I start whining. So I had to suffer in silence. Waaa! Anyway. There's so much to do at RMH that it was difficult to not make some time for playing...

I think Torie and Lexie enjoyed meeting Jerry more than anyone else. Jerry is the RMH therapy dog. He is a super sweet mellow Labradoodle with an incredibly high tolerance level! Kids hug, lay, pet, pat, pull, etc...he just lays there!

Wednesday evening we had wrapped up our appointments and had some extra time so we went out to Maggiano's (one of my top faves) for a celebration dinner. Super deliciously yummy! When we got back to RMH, it was sleep study night. Respiratory brought equipment and she was hooked up for the night.

She sure didn't like her "kitty whiskers" but she never tried to take the off...even in her sleep! That'll make a Grandma proud. She cruised through the night with no problems at all. I wish Mom and I had too, but I think between the two of us we checked her every hour. Yaaaawwwnn!

Thursday was OR day. By the time she left pre-op holding she was getting hungry and a little cranky, but a little bit of Versed changed that. She left Lexie singing "Yo ho yo ho (Pirates of the Caribbean) T-O-I-E!" We spent a very long day waiting for her - she had about 6 different procedures - but everybody was great keeping us updated. A bit of a scary time with the breathing tube, but all in all, everything went well. Intrathecal ERT at 12:58pm. I can't explain the feeling knowing that we are underway with treatment. Part relief, part hope, part faith, and perhaps a side of anxiety of the unknown. But just knowing that treatment has begun feels like we'll have her longer. She felt kinda puny after, but she got to her room on 5D (the Pediatric Bone Marrow Transplant - BMT -) and settled in pretty well. Lexie stayed the night, and Mom and I headed back to RMH. It was "Parents Night In", a special dinner that volunteers host about 3 times a year. Fabulous! Candles, flowers, steak, wine...Incredible. Those Minnesotans have huge hearts! Mom and I both bawled for a while...Again just relief I guess, but definitely tears of joy.

We enjoyed our dinner very much but when we got back to the hospital Torie was eating Cheerios and drinking apple juice. I think that was one of the best looking dinners we'd seen...just nice to see her getting back to her usual. She loves her groceries!