Monday, October 15, 2007

Same song, second verse

Sometimes the details I write about our never ending medical crises bore even me. Consider that fair warning.

The newest kink in Annie's little body has to do with potassium; specifically--too little of it. We had a routine blood draw on Thursday, (Miss Fran got it on the first try--it pays to have friends in lab places), the results of which showed low potassium. Low potassium (like high blood pressure, the change of seasons, or the wrong radio station) can cause nausea, as well as about 5 other hideous symptoms. May have been why Annie was looking so pekid last week. Anyway, our GP & the Endo doc at Children's conferenced over the phone (always a bit of an alarm when more than one doctor weighs in), and gave us some instructions to rectify the situation. I think she's a bit better today, and tomorrow we'll go back to Miss Fran to verify that her potassium is where it should be.

This episode is another weird Addison quirk. All of your electrolytes are delicately balanced by your normal endocrine system. But with hers, it's all controlled artificially with medications. Too much medication whacks her out. Too little whacks her out. The barometer falling whacks her out. And again, this just gets more complicated because she can't TELL me what feels icky.

But the good news is she's trying REAL hard to let her needs be known, which is the other subject we'll tackle tonight. How loud can Annie scream? What octaves can she reach? When do the neighbor's ears start to bleed? It's not that I'm ungrateful for her efforts to communicate. I just wish she'd be a little less emphatic. Tonight Annie's blood pressure seemed low compared to everyone else's in the house.

I finally decided to help her take a walk around the house thinking that maybe she'd let me know what she wanted when we got close. I started getting warmer when we walked down the hall. I hit the jackpot when we got to the bathroom door. She wanted to take a bath.

Jean


Great peace have those who love Your law,
And nothing causes them to stumble. Psalm 119:65

12 comments:

Anonymous said...

Hmmmmm.....sounds like Annie has developed some rudimentary critical thinking skills to me. Won't it be great when she can put words to her thoughts and feelings? But she wanted something and she communicated it. Whoo hoo!! Go Annie! (Sorry about everybody's blood pressure, though.) And way to go Jean, (as usual!) for being persistent and figuring it out.
Thank you sooooo much for updates 3 days in a row. Please know it is not expected, but it sure is appreciated.............plus I love your sense of humor!
Is Annie still throwing up? I nervously (figuring you had already tried everything, but maybe it was worth a shot)wrote you guys a comment about timing of feedings, etc; but God must have known you didn't need it 'cause it's still floating around cyber-space somewhere.
Continuing love and prayers,
Terri W

Annie Sullivan said...

Yes, Terri, the feeding timing thing...we've had varying degrees of success with different feeding times/amounts. The bottom line is that her meds and physical situation change every day, so that by the time you've figured something works--it doesn't!

But to get her back to eating food, I have been trying to sit Annie at the table in her highchair (her legs just about hit the ground) during mealtimes so that she can associate feeling full with sitting at the table, rather than as with most kids who are G-fed tube--feeling full for some mysterious reason just sitting on the floor or lying in bed.

She's just a puzzle everyday, and I need to depend on God every moment for wisdom. That's when your prayers kick in!

And yes, we were up this morning from 3-4:30 AM. We've got to figure out the sleeping gig. It's still a problem.

Love,

Jean

Anonymous said...

Jean,
I can hear you saying every word you write. You are such a blessing to us, to write so honestly and with the slight silliness that is a must to keep going. Thank you. You know, Annie's words are just beyond her tongue. They're there. One of these days she will say 'Mommy' just like before... I will continue to pray.

Love you --
T

Gretchen said...

Jean, you are doing such an amazing job loving and raising this daughter--just like her siblings before her. You are a fantastic mom and example of faithfulness to God and His lead. We might not have any clue where or why He leads us the places we go, but we go because He is God.

xxxooogretchen

Anonymous said...

Hey! My names Jess, I'm 16. I too have Addison's Disease. I've had it about 7 years now. I know how hard it is. But there is going to be an amazing healing in Annie's life. Just keep the faith and patience!! God Bless!!! :)

jess_rox272@hotmail.com

Anonymous said...

Sending hugs. It must be so frustrating for all of you... especially Annie! -- that she is unable to clearly communicate. But YES how exciting that she is able to let her needs be known and that you were able to figure it out. Hang in there! And we will hang in with the prayers!

Sue Powell

Annie Sullivan said...

Annie slept through the night--thank you ALL SO much for your prayers! And thanks, Jess, for writing--your post is very encouraging.

:)Jean

Lynn Casey said...

Go Jess go. Thanks for the word of wisdom. That is really good news Jean. Oh yeah Gretchen you are sooooooooo right. GOD IS AWESOME!!!!!!!!! Keep up on the praying. I know i am.

Love,Lynn

aunt rebecca said...

Jess, How on earth did you find Annie? It's a God thing for sure. You are 16? What a blessing you wrote.

Jean, It took me awhile to remember I hadn't posted in response to this update. Sorry! It's funny (well, maybe not FUNNY, but ...) that our kids train us so well. Think of it in reverse...what about when you want them to do something? An increase in the decibels sometimes works, eh?

Annie Sullivan said...

Sometimes.:):)

So--another night sleeping through the night, and NO HEAD DROP SEIZURES YESTERDAY!!!!

Thank you Lord!

Jean

Anonymous said...

Woohoo love those good reports! \o/

And yes, Jess, I too appreciate your coming here to post and encourage us all! Thanks!!!

Sue Powell

abecsei said...

Dear Jean, We've just heard about your family and Annie from your niece Kate who is leaving Hungary tomorrow. Being christians ourselves and being at the beginning of raising our first child expecting the second to be born in May were truly touched by how you need to take first step learnings with Annie all over again. May the Lord give you energy and patience for all you do with Annie. Will write more later, just wanted to let you know we also join the praying family. Shalom, Anna, Laci, Bence and The Little One from Budapest, Hungary