Battles against terminal illness, anxiety, and life!


Last night we watched Braden play with Justin’s work iphone.  He was playing a flight simulator game.  What amazed us was how you took his shaky little finger and pushed the touch screen and made his way to not only start the game over and over but to select which airplane he wanted through multiple screens.  It was impressive!  This pretty much solidified our decision to get him an ipad.  We are hoping that we can eliminate some tantrums with its speaking application, give him another learning tool, and perhaps give him something fun to do as well!

His ataxia last night was something to behold.  His little legs caused him to swagger and sway.  His speech by 7 pm was nearly unintelligible.  He was that exhausted.  We’ve noticed that  he speaks pretty clearly (by A-T standards) during the day, but once evening rolls around you can forget it.

We’ve had a LOT of trouble with him holding his bladder this week.  We are holding out hope that it was just a bad week.  Yesterday he did really really well though.  By really well, I mean he had only two accidents.  One was when we didn’t remember to schedule in a stop. The other it was in the evening when he typically has more trouble.  We are holding our breath and hoping that eventually he will be potty trained.  If not, then we will tackle that with grace and style.  So be it.

Today we are taking Braden for his extra immunizations.  Lucky kid, eh?  We are not looking forward to this, but it must be done before he goes to school in less than two weeks.  We also want him to get passed the fever and ick that always seems to follow before this weekend.  We are spending it celebrating my dad’s birthday, and will be spending it with my parents and my brother and his camp.  We should have a lot of fun!

We have been doing pretty well with eating.  Last night, we got Braden to sit at the dinner table with us to eat.  That has not happened in a long time.  It made me a bit misty, as I long for family dinners at the table.  However, I have come to learn to live in the moment where A-T is concerned.  We are making small strides, and each one is a celebrated victory!


Comments on: "Life" (1)

  1. I know I don’t comment very often and I don’t think I ever told you what I do…and I should have, sorry. I work in an autism program (which I know is very different from A-T) but we use a LOT of assistive technology and we’ve just been working with most of our families who are deciding between the itouch vs the ipad and all the various speech generating software. I know you’ve probably done a ton of research on your own but shoot me an email if you want any of our info. And sorry I didn’t put two and two together sooner….

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