WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Saturday, March 31, 2012

The ups and downs..

A few Drs. appointments back, when asked how Abby was doing my hubby replied- "a lot like the stock market, lots of ups and downs, and tons of uncertainties."

I have yet to have found anything that fits better then his analogy. Mito rules the "energy market" for Abby.

Abby and I were watching the local news yesterday and saw that the German Fest is in Tomball TX this weekend- it sure looks like fun! It is also free to wander and we are very tempted to go. Looks like it is on paved ground which would make navigating a wheelchair much easier. Based on what we saw on the news it doesn't look very shaded.. we aren't familiar with the location as to whether it gets a nice cross breeze or not...

Abby also shared there is a Japanese fest in Town somewhere this weekend.. these are the type of activities we adore.

Now to figure out if we can. It is supposed to be almost 90 today and tomorrow. This far exceeds what Abby can tolerate. The mosquito's are especially vicious and since allergy meds seem to upset her delicate balance right now she would have deal with the reactions..itchy welts would interfere with her sleep and that little bit of extra aggravation has tipped the cart in the past..

She had an iffy week with tons of tiny ups and downs..her tummy is holding. Her face which is the quickest way to gauge her looks pretty good this morning. Would an hour of the German Fest be worth a week or two of potential(and likely)misery?

Odds are, probably won't, Abby doesn't want to go badly enough to pay the piper for over doing it,over heating, exposure to a huge array of allergens.. Despite the constant little ups and downs all week, she is at a holding spot- not great, but we have seen much worse weeks.

We let her play her own energy stocks- sometimes she can read into the future just enough to know where to play her energy, sometimes she takes a loss, sometimes she gains..

You never know, she might say- Lets do it! If not, we have plenty of errands and chores. We don't go to these fun things unless she feels well enough to be with us. Even going to the farmers market to do grocery shopping seemed less joyful without her with us. None of us enjoy much without her with us. I think it almost makes those times when she is in a gambling mood, all the more delightful! There are lots of things we do without Abby and she has never complained.. but, where with most teens that get left behind because they really have no interest in hanging with their family, Abby's held back by her finicky body.

Back up plan- The movies! That is something that is always worth a few spoons! Plus, we can get her close to the door without having to use a chair,perfect climate control-reduced risk for sure! We read the Hunger Games books(Which were terrific!)I think we might like to see the movie.

There are warm Texas days where I really wish we could live half our year in the North and half in the South- I see being snowbirds in our future!


Jenna said...

I have thoughts of posting a simulair post. Since Matt is still small I have to be the sole decider. It is hard to make these decisions, I miss the days of go go go. Yesterday I had thoughts of sea world, we also ended up at the movies.
I am not looking forward to summer, honestly Matt is still on the uphill but he is still no where close to where he was last year.

Diane said...

Jenna, I am glad you get what we are dealing with... especially when Abby was little it was so hard to explain why we stayed home more then others.. It was hard to find other little ones who enjoyed quiet,low energy,indoor playtime..Disney and other outdoor parks are impossible these days. Too much energy- just driving across town for a Dr. appt leaves her drained for a week.. at times the isolation of this disease is overwhelming..but, thank goodness we have the internet and each other! How hideous would this have been before the web?

It has gotten easier as she got older, despite her health issues being more complicated then ever, she is in control and makes the decisions and I think that really has helped, I don't feel so singular in being her only advocate. Now it is us standing with her, and not just for her.. She knows what is worth risking a week in bed for :-) She also has become excellent in splitting up her "spoons" to last as long as possible.
Hang in there,

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