Sunday, March 8 2009- 5th day at Craig

It's the last day of the weekend, so it's the day before the going gets tough! Tomorrow starts the first week of more action. Christy's got her partner Don to keep her motivated and progressing! Before the therapy starts up, Christy is going for an MRI tomorrow morning at Swedish Hospital. I'm not sure if it is a functional MRI or a regular one. Christy had a regular MRI at Queens, but like everything else, they are repeating test on their own machines (the equipment here sounds more advanced than the ones in Hawaii). Dr. Ripley is getting all the test results ready to explain what exactly is happening in Christy's brain and what affects we are seeing in Christy now. Then the game plan will be laid out for Don so a end goal can be visualized and we can get an idea of how long the therapy may take. Hopefully they will be ready for family conference on Tuesday, but there isn't a time scheduled for a meeting yet.

This morning started off with breakfast. Don said that Christy's speech was top shape this morning. He woke up and Christy was calling him "Don! Don! Are we going to go eat?" Christy is enunciating well and eating more. Her increased appetite allows her to get one step closer to getting the PEG removed. Christy's tech or nurse takes a look at her tray when she is finished eating. Christy has to eat at least 50% of her food to try and avoid a bolus of tube feeding. Christy was verbalizing today that she didn't want the tube feeding. Our nurse also named Christy told her that she had to eat more so she wouldn't need it. Christy agreed. A bolus of tube feeding, by the way, just means a big amount at a time. the other way to feed is giving a small continuous amount over 24 hours- the continuous wouldn't allow for activities and the bolus feeds simulate eating meals. Today at lunch she had spaghetti, a strawberry milkshake and some yogurt. Christy is able to move her tongue around more to chew up the food and swallow it down. As always, she's got her diet coke and that helps wash the food down in between bites. It's hard work for Christy to be moving her mouth and coordinating her muscles & tongue to chew and swallow. It gets exhausting trying to concentrate hard & chewing so much. She's better every meal! The picture here is of the tables in the gym/cafeteria where we sit and eat. On the weekends, the public cafeteria in the basement is closed, so family can eat at the same cafeteria as Chris. You just purchase the food you want! Christy ate really well at dinner, too. She really wanted a CHEESEBURGER all day long, but she's not quite cleared for that yet. We'll see if Christy's improved motor mouth skills allows her to advance to eating bread soon! Then it's cheeseburger time!

Christy was tired today. She had a nap after breakfast, a nap after lunch and was in bed by 9:30pm. We were all dozing off after lunch today out on the glass bridge where we like to soak up the sun. Sleep allows the brain to heal. when she's not in bed, her time is spent in her comfy wheelchair. Christy's sleep wake cycles are still getting adjusted, but it seems that she's resting better and better at night.

The picture on the right is a picture of PT Huddy transferring Christy back to bed after her bath tonight. Donald did a good job with Christy's hair- he got the leave in conditioner in and brushed it down very nicely. It was like Christy did it herself!

Don and I watched the educational video on seizures today. There are tons of educational videos about all kinds of things on the TV in Christy's room. You just look at the menu of videos one one channel, dial a number on the phone in the room & follow recorded prompts to punch in the number of the video you want. The recording tells you which channel to turn to and there is 20 second count down till it plays! We have to know about seizures and what we need to do in case we witness one. We had to take a test afterward, so we watched it again just to make sure we got the answers right. Checking family off on these types of educational things allows us permission to head towards taking Christy downstairs to the gift shop or cruising in the hospital. We can progress to taking Christy on a day pass to get out of the hospital! There are activities scheduled throughout the month on a calender that Christy will eventually be able to participate in. The hospital provides transportation, too! There is an activity room downstairs where I saw a pool table, painting supplies, a greenhouse & more. They just had a day where someone was doing facials and manicures! Craig seems like a wonderful place to be!

Christy is humoring us every day with her witty sense of humor and bright personality. We crack up at how jovial she is when talking on the phone or just in conversation with us. Kaeo called to talk to her tonight and was telling her that he went to see a movie by himself, and Christy said "Poor Thing, you have to go to the movies by yourself, ya?" We were all cracking up because the way she says things are so humorous!! She has all the information correct when he asked her questions about how things are moving along here. This means her short term memory is rockin'! We are constantly impressed with Christy's progress, playful participation in conversation and motivation to get better. She looks great, she sounds great & she's ready to get to work this week!

We also wanted to mention that Christy is reading the blog with Donald almost daily now. Christy said to me today that they are into January 17th (around there). Christy loves hearing the comments that are said to her each day that goes along. So I encourage you guys to put in comments on here, so Christy can hear you speak to her individually!

I'm crushed because tomorrow morning I will be heading to the airport to go back to Hawaii. I don't want to leave Christy and Donald... I feel like Christy is my sister more than ever now & I want to be here to encourage her and love her when she needs it. I'll miss hearing her laugh and make jokes every day. I want to be there to see every day of progression :( I'll be calling her daily and getting pictures from Don for the blog. I guess I'll survive... and I do miss my honey at home. Keep the prayers up, they're working! Until tomorrow, xo gabby