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


Gretchen said...

You're giving your age away with that Rubik's cube reference, Jean. Though apparently I am, too, since I know what it is. ;)

Thanks for the update. Will continue to pray.

Grace, friend.

Anonymous said...

Jean - I'll be interested to her the results of the celiac testing. Zac has had that endoscopy done 2 times and both biopsys were negative however his bloodwork contradicts it. Our GI is following Zac because he thinks inevitably he will have it. Right now he's callling it IBS with constipation and is telling us to give him miralax daily. Good Luck !
We are getting ready to go back to school and Zac is at a new school this year, so i'm a little nervous getting everyone on board with the meds and zac and all that goes with that.
Barbara - Zac's mom

Jean said...

Gretchen--not only does the reference to the Rubik's cube age me, but so does the mention that my son and his wife are going to have a baby. That would make me, yes, a GRANDMA. But I don't look a day over 55, right? Your son cracks me up.

Barbara--how odd that the bloodwork contradicts the other tests. Thanks for that tip, in case we get similar results. Yeah, our experience with the miralax is that if you don't give enough, nothing happens. Then you give a little more and nothing happens. Then you give a little more than that and everyone better run for cover.

As far as school--my experience has been good with our school, but I know that most people need to educate, remind, write it down, and then repeat themselves at least once a week. What is it, you need to present information 3 or 4 different ways before it sinks in.

Take care & thanks for checking in you guys!

uncle jeff said...

praying for annie health and happiness. you pretty princess, you:)

also praying for jean's future career - writing. jean, you are a writer.

Anonymous said...

First up - to Barbara AND to Jean - have someone look at your kid's blood under a microscope - with HUMAN eyes.
Jean - remember when Mom's blood test by the machine was misreading her blood facts? And the human bean looking into a microscope saw what was going on?

Secondly - I appreciate the recap. It's very clear and organized, and it really helps all of us who want to pray with understanding from time to time (when we're not slobbering all over ourselves)

Jean said...

Thanks, Jeff. :) And, thanks Rebecca for the info about Mom's blood tests--I must have missed those conversations. All I remember is that she was sick and I was sad.

Sue Powell said...

Hmmmm I read this before but guess I forgot to post; but I am praying. LOL about the Rubik's cube... it sounded so "normal" to me that I never even caught that it was "age revealing." Guess I know what that says about ME. :)

pam said...

ok, what's a Rubik's cube?....


Susan said...

Hi Jean,

Well I read ALL of your post and it allowed me to catch up since I have been behind on people's blogs, email, etc. Very encouraging stuff...still a long road, but you are never alone in it. You already know that. :-)

I LOVE the pony photos! There's something about a kid with a pony -just something very natural, like they are on the same wavelength or something. At any rate, carry on!

Love you,

Jean said...

Thanks, Sue, for your prayers. Pray that Pam remember what a Rubik's cube is.

And I agree, Susan, that ponies & kids go together. She really seems to enjoy hippotherapy. Heck, I wish I could ride too!

pam said...

Just so you know...Gretchen sent me a picture of one..just because she 'cares'. Nice of her, don't you think??

Jean said...

We think Gretchen is the bomb.