Friday, April 11, 2008

Good news/bad news

It's good for me to look at Annie's pictures running down the side of this blog, and compare her expression today from just a few months ago at Christmas. Used to be, she would rarely smile--but today, she smiles all the time. But yesterday was the first time I heard a full-blown giggle. I forget what we were "talking" about, but we were going back and forth, and she kinda looked at me like I was nuts, so I just said, "WHAaaaT??" Well, she just started laughing and wouldn't stop. It took me a few seconds before I thought, "Hey--I haven't heard that sound in over a year!" It was very cool.

So the other very good news is that her seizures have gone from about 4 an hour a week or so ago, to about 2 a day. Yeah--TWO, as in the number 2. She had 2 yesterday and 2 that I saw today.

Now for the challenge of the week: Annie's g-tube needs to be replaced, because the button that closes it broke off. Millie probably found it on the floor and ate it. I guess these tubes usually last about a year, and then need to be switched out. So I called Children's this morning, and they providentially had an open appointment this afternoon with the general surgery nurse. We discussed the options, which are: get it replaced in the office with great pain and suffering, or get it replaced with outpatient surgery. They'll call us to schedule the surgery soon.

Gotta take the good with the bad, eh? Giggles, less seizures, and minor surgery. The trend is still UP.

Jean

I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world. John 16:33

10 comments:

Anonymous said...

Hi, Sullivan's! I missed saying "happy birthday" on the day...but it does sound like it was a rousing celebration. I'll have to keep a look out for something that will be a good high-fat, low carb replacement for Veggie Stix, eh? Glad we found 'em for her when we did!

Eating with a spoon is wonderful! Giggles are AMAZING. I'd love to hear them myself. Maybe next week I'll be able to come up there.

Hugs to Annie...prayers for all of you for stamina, courage, rest. Hope the surgery is a routine, uneventful event.

love,
Beth

Anonymous said...

So sorry about the G-tube; but way cool about everything else!!!

Love,
Terri W

PS Charly and I are needing a "Sullivan fix" as well.

Jean Sullivan said...

Hi Beth--yes, if you can figure out something that crunches and melts in your mouth and is on the keto diet, I'm all ears. Stop by whenever you can.

Terri--you & Charley,too!

Jean

Anonymous said...

A child's laugh
what a wonderful thing
in the midst of it all
what joy it can bring.

If we all took a moment
to share in that thought
it would warm our hearts through
as we know that it ought.

So in over a year
this laughter not heard
comes forth in a burst
in response to one word.

So 'WHAaaaT??' was the one
which brought out the giggle
and on did it go
with a twinkle and a wiggle.

And Mom, so blessed,
for a moment stopped short,
and paid blessings forward
in her latest report.

May this trend continue.
For the positive wins:
we pray fewer seizures
and more giggles and grins.

Hugs and kisses,

T

Tracey said...

Rice cakes? (Do they make them WITH flavor?)

Gretchen said...

How 'bout plain old bacon. Mm... or fried mozzarella sticks...Nummy!

So glad about the seizures, Jean! Sorry about the g-tube. Not surprised that Millie found it. Doug has found evidence (in the yard) of our Annie enjoying athletic socks. And here I thought it was the dryer that "ate" them...

Giggles. So priceless. xxxooogretchen

Anonymous said...

Yes! The expressions are priceless... and super about the giggles. Sorry about the
g-tube. :( Still praying

Sue Powell

Anonymous said...

I am so happy to see how Annie has improved over the year :) I am constantly in awe of Gods power as he has shown time and time again to trust him when the problems in life seem insurmountable. Annie is truly an ispriation to me, she has gone through so much and yet she still exhibits her own personality, and lets us all know that shes not giving up...therefore neither should we!!!

God is Good!

In Him,
Veronica

Anonymous said...

I agree with Veronica. GOD IS AWESOME!!!!!!!!! Annie has gone through so much and is still going. Keep it up!!

In Him,
Lynn

Jean Sullivan said...

We haven't tried rice cakes, but we have tried bacon. Annie loves bacon. And when I gave it to her the other day, she crunched and munched, and wanted more and more and then--threw it all up.

Oh well. We'll try again.

:)Jean