Saturday, August 22, 2009
End of Summer
Hard to believe that summer is almost over, but I figure this is a good time to assess where we are, where we've been, and where we're going in Annie-land. Looking back over the last two months, we probably packed in too many therapy and doctor appointments but the good results make the frenetic activity worth it. You can read the details here, or do what I do and skip down to the bottom line.
Where we've been
Addison's: We started the Fludrocortisone a few weeks ago. It helps her body regulate fluids so that she doesn't look so dehydrated and gaunt. So far I think it's working, and we're controlling her blood pressure with another med. (Remember, she's a Rubik's cube, and when we change one thing, we usually need to change something else.) Also, after meeting with Annie's endocrine doctor last week, we increased her daily hydrocortisone dose which also seems to help her overall sense of well being. In fact, I noticed when I got home from my time away with Olivia this past weekend that Annie seemed to have perked up a lot. So I figure it's either the increase dose of hydrocortisone or her dad does a much better job of caregiving and probably needs me to take more vacations.
Constraint Therapy: Three weeks of constraint therapy have brought about some nice improvement on her initiation and use of her right arm and hand. Our job is to build on what her therapists began. Things Take Time.
Seizures: Annie is relatively stable and for that we are very thankful. Her seizures average about 2-4 a day, and are brief blips in her awareness. The downside is that any seizure is really too many, so we'll continue to adjust her meds with the goal of zero seizures. And then someday maybe I'll get her a pony.
Where we're going
Gastro: We're going into GI clinic this week to try to sort out her motility issues. She was recently tested for celiac--a common comorbid condition to Addison's--and we'll have the results back from that soon. She isn't vomiting nearly as often as she had been--probably because she is more hydrated with the fludrocortisone on board, so hopefully she'll regain some of the weight she's lost. You may have noticed that in her recent pictures she looks thinner than in earlier ones. I think there's a link between needing the fludrocortisone, and nausea, vomiting, losing weight, etc. Plus, if she has celiac or malabsorption or ?, then that would contribute to the weight loss. Or maybe she just needed more hydrocortisone, or....
She hasn't been constipated lately, either, but has swung to the opposite extreme. I'll spare you the details, but suffice it to say that the GI people will be questioning their choice of profession after our appointment this week.
Mobility: We have the Kidwalk gait trainer ordered, and it should arrive before school starts. That is, if school starts. The district website says that the teachers still don't have a contract, although I'd be happy to type one up for them tonight.
The Bottom Line
You were wondering when I'd get to this. The bottom line is Annie is doing well. Our family has enjoyed a full and busy summer and most of us are looking forward to school starting again--Andy back at school in Portland, David beginning college, Jack & Olivia both in high school together, and Annie in full days! Peter and Cris are a week or two away from welcoming their first baby girl into the world. Oldest brother Taylor keeps truckin' the 11 western states with too infrequent visits home. And Bill and I are thankful for the patience, strength, and hope Jesus gives us each day.
I can do all things through Christ who strengthens me. Philippians 4:13