Playing and Flying

Here is a great picture from our time out with Joe today. We went out to McDonalds with Stephanie and Elijah. This picture was taken back at the house when we returned after eating and playing for an hour or so...it was a good way to include family in an outing with Joe.



I had a chance to ride high this weekend. Saturday morning Peter T was looking for a passenger to take along flying - he owns a 6-passenger Beech Prop plane that he keeps at Deer Valley airport near Scottsdale. It was a short flight up within eyeshot of Sedona and back. A nice smooth landing capped off a very pleasant flight. Next time we are planning a longer trip including landing and having lunch before returning.












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Some Family times

We have had some really fun times with family this week.

Stephanie and Jamie have been here for two nights now, and the conversations are...shall we say amusing. I can't even tell you the topics, everything from emotions, to well, you fill in the blanks...they are so varied and bizarre at times. Add to this Noah and Elijah, who are crazy, crazy, CRAZY, when playing together, or at time you might say fighting, it's hard to tell. Thanks to God they go to bed at some point.

This is what we call fun around here. I know, it's sad ;)


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Email Updates

We are now getting email updates on Joe via email from the house. This is one of the outcomes from yesterday...another was a plan to handle these desat episodes. In general the meeting went as well as anyone could hope and we fell like we are making good progress, if that is even a word that describes this time, I don't know.

Just to give you an idea, today's update was "Joe had 2 episodes this morning at 6:30 and then 7:15 each lasting 3 min. He has been High Pressuring on and off since about 4:45 when we put him o bed. He had a BM for Night shift and day shift today.". This is exactly what we asked them to do so we have made progress...this really is the kind of info we need.


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Care plan meeting and special visitors

Please be praying for wisdom and a good outcome for our first Care plan meeting with the group home staff and the palliative care team...our friend Jon will also attend as a support for us. Topics for discussion are hospitalizations, blood transfusions, and the episodes joe has been having where he drops sats suddenly for a very short time.



Before the meeting we plan to take Joe out for a short time...this has been our plan for wednesdays and this week is no exception. Our goal is to get him out as much as possible while he is stable, which he has been thanks be to God. So off we go - a local place called Coffee Rush is a possibility, but there are plenty of options for that time of the morning for sitting outside I hope.
We are also expecting some special visitors. Stephanie and Elijah are going to be staying with us for two weeks, and I thing Jamie and Noah are planning to come up for a few days as well. So break out the boy-toys. *"To infinity and beyond!"*


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Weight loss

Most of us would not see weight loss as a bad thing...unless of course we had lost too much, which is highly unlikely for me considering yesterday's post.


Joes weight has been dropping some over the past few months for unspecified causes. At first i would say he could stand to lose a bit, but now he is more or less at a good weight...losing much more would not be a good thing.

There are a few possible causes - one is the C-DIF, which wreaks havoc on your digestive system. The other possible cause is the antibiotics. In either case there is no change this week which is a good thing.

This will remain one of those things we will be watching as the weeks go by. But then who doesn't jump on the scale from time to time anyway? For Joe it is every Monday am. I had a friend in NJ who used to tell me that when he got on the scale it used to say "one at a time, please!". What about you? What would your scale say if it had the chance?



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Freddy's

After a bagel and coffee with Jeremy before they headed out this morning we did our church thing and went up to pick up Joe. We've been eating out a bit more lately because of all the times where it just makes sense to do something rather than just sit around at his home...and I have to write about the place we went to today.


Freddy's is one of many hamburger joints that are out here, and we like it a lot for a couple of reasons...first they are really nice and very disability friendly. They seem to look out for people coming in with wheelchairs and walkers and that was us on every occasion we have been there, including today (the wheelchair, not the walker, that is). There is plenty of room to move around and we can always get a table where people aren't right on top of you. But also the food is good; (notice I didn't say good for you).



Probably our favorite thing about Freddy's is that they play 60's music which is really fun because we know many of the songs and can sing the words to each other. Now Joe doesn't sing much thankfully, because neither of us is in the mood for the kind of sounds that he makes. Frankly no one else is singing either, and come to think of it maybe they aren't in the mood for the kinds of sounds that we make either. Oh well. Home to read the paper afterwards, followed by a great salad for dinner.

We enjoyed this wonderful break as a day of rest today. What did you do to glorify God on his sabbath? I'd like to hear about it.


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Visiting with Jamie

Jamie and I went up to see Joe today while G-ma watched Noah. We went up in the late morning and Joe was up in this chair and looking really good. He opened his eyes wide for our visit. That was of course after the aids had to change his shirt and everything else that had gotten wet from a bib mishap. He really is looking good, which may be temporary but we will take it.

Then we went back home and ran 3.5 miles. So much for a perfect day (just kidding). Jamie started out too fast and I was having trouble keeping up. She actually talked my ear off while I huffed and puffed and eventually slowed the pace. When we got back she talked me into committing to running a half marathon together in the future. Does this sound familiar? I had an epiphany while out...we have actually switched roles...I was the one that used to lead the running, now I'm being dragged. Ugh!



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