Schedule and Technology

Technology is such a great tool but is so vulnerable to dead zones and dependent on cording and such. I have been without my computer for two day because my power supply was severed some how. My cell phone doesn't have service in the hospital. I don't know which addiction is worse, mine to technological devices or the devices and their need for electricity.

I mentioned that I would put up Maddi's schedule so that visiting could be addressed. Maddi is scheduled down to her potty breaks and everything takes three to four times longer to get done than before. So here is a list of the big things going on and of course it is a rough sketch that will be "tweaked" in the weeks to come. I am going from my memory which includes all the transition times moments in between. They will actually print out a schedule for me this week that will be rock solid and unbend-able!

8-9 am
OT and Daily ADL's ( basic grooming, teeth, hair, dressing etc.)
9-10
PT
10-10:45
Speech
11-1:30 pm
Rest/ Bathroom/Lunch
1:30-2:15
OT
2:15- 2:45
PT
2:45- 3:30
Speech
4-7
Quiet Recovery Time
7-8
Shower/ ADL's
8pm
Bedtime

Music Therapy is after this sometime and hasn't been rigidly scheduled, as of yet, but will be. In those times between we are drinking and taking care of other business. This doesn't include any school which will eventually be part of what she is doing too. This list doesn't include Doctor's rounds and evaluations and other things. All of which takes time!

So hopefully those of you who have expressed an interest in visiting can see my quandary. By the time she gets back to the room she is so tired and desperately needs the quiet time for her brain to continue healing. Too much stimulation is not as big a deal as before but is still something to be careful with. That being said the best time to visit would be:

Visiting Times:
Sunday anytime after 11:30. The branch meets before this time and we will be going as a family. That way we can spend Sunday all together. We do plan to go home at around 5 or 6 just to get ready for the new week.

4-7 Monday through Saturday

Saturdays can be different and really busy with all her therapies in the am and family time (passes) in the afternoon. The time spent away from the hospital on Saturday really makes her tired and stimulates her a lot and she needs her quiet even that much more. I know that these times are not the best for people but that is just the reality of our lives right now. It all depends on Maddi and what she needs.

It is imperative that you call or email before you come visit right now.

Email is the best way to contact us because cell phones don't work at Primary's. I do try to check messages on the way home but I might be staying more than coming home. Here is my email if you don't have it. I try to check it often but can't personally respond to every message. I wish I had the time to do that just out of gratitude for all of your support, prayers and love!

bevsanders217@gmail.com

We try to go home to Nibley between 4-6 depending on the day so the week nights are hard. Sorry our times are so tight but it is a crazy life we have right now.

One of the things they have cautioned us about it that there has to be the correct balance of work and rest for the healing to be lasting and most positive. If we push to hard with to little quiet then it creates more confusion and a muddled recovery for her. It is fascinating how the brain works!

After having talked for 2 hours one morning she said she had a headache. I asked her why she had a headache and she remarked that it was too much thinking. She remembers so much and the things that she doesn't are simple things like not knowing the year 2010 was over or the name of the hospitals she has been in. Well, we didn't have a big party for New Years and I didn't think to tell her the date every day, so it makes sense that she wouldn't know that. The staff here are truly amazed at her recovery. I will have to write about that for another post.

Some of you may be wondering what it is that I do all day while at the hospital. Well, I go to all of her therapies with her and they are instructing me as to how best to help Maddi to cement the learning in her brain. Retention and consistency are the key work and words here.

During the off times it is all about making sure Maddi consumes enough calories NOT to need a G-tube feeding and that she gets enough rest. That takes constant vigilance and dedication.

Trying to get Maddi to turn off her brain right now is the most difficult thing. She just wants to talk and learn and talk and learn. It is almost like her being stuck on a Manic setting. She says, "I have lots to say to make up for all my quiet." "I have to learn to go home."

She is determined to go home. She knows that she has to learn so many things and she keeps saying, "Tomorrow, they will discharge me so I can go HOME." We bought a calendar so she can mark off the days. She was a little depressed at how many days she has left. I marked it for 7 more weeks but hopefully it won't be that long. I actually depresses me if I think about it too much. She wants to go home with us right now! She is desperate to learn so she can go home. I don't know who is more desperate, Maddi or the rest of us.

We were granted a pass today and we went to Olive Garden for Spaghetti, of course. Maddi also wanted to go to a bookstore to get the next book in the series she was reading before Thanksgiving. She remembered the author and title of the book, "Seeing Redd". I figured even if I read it to her that could be fun. She found the coveted book and we found a comfy chair thanks to Mason and we started reading.

I was utterly amazed that she read it so well. It was more of a voice issue than a reading deal. She read 2 pages without any trouble. I asked Maddi when she was using sign if she could read and she said YES. I needed proof to be sure she could. Well, today I got that proof. It took her a little more time and effort but she read it without any trouble and she could tell me what was going on and what had happened in book # 1. Insert another happy dance! I need to learn some new moves.

She has this amazing linguistic mind. She has gone through the entire alphabet and compared words that sounds like letters. For example; "you sounds like the letter U, see sounds like the letter C". She also is rhyming everything. I think it is interesting to note that she did the rhyming when she first learned to talk as well. Sometimes she says crazy things that I have to figure out and then sometimes what she says is so profound that you wonder what else she experienced when she was "still and quiet" as she says.