Thursday, October 4, 2012

31 for 21: Mommy report: B is a start

Braska can't write her name. She is still working on forming any letters. Fine motor is just about her most delayed area, after feeding. But this was on her paper brought home today. It's a B. And the best one yet. The big red heart, star, and note are from her superbly patient and very wonderful teacher Mrs. E.

She always recites her "a line down, a bump and a bump" when she writes them.  The other night she spent an hour writing lower case i and capital H on her magna doodle over and over.  Maybe we'll see "a spurt," as the girls like to say about anything they learn or when they grow.  I am ok with a spurt.

Saturday, August 4, 2012

Mommy report: BIG feeding news!

First, just watch.  Really. If you even know an inkling about Braska do NOT miss this.

I won’t say much, as I don’t have time to share the whole story.  But here’s the highlights.

  • Last Friday, new eyes on B for a behavioral feeding consult. New protocol given.
  • For the last 7 days, we’ve rearranged pretty much everything to abide by the new protocol (including 45 mins 3 x day for focused work).  I admit I’ve missed a couple I just couldn’t figure out how to avoid.
  • Today at lunch she did really well eating her little tiny squares of graham cracker. So I thought it wouldn’t be to far a jump to cheerios.
  • She was watching Sesame Street this evening, and I handed her a cup of milk and a little cup of cheerios and told her to practice her crunchies.
  • It took some prompting, but she took one each time, chewed it, and kept it in.

Read that one again right up there….  that is BIG in our world!  HUGE!!!!!

So I had her sit up where I could get video for her feeding team, and she cooperated pretty well.  I can’t believe it, but we’re celebrating here!

(By the way, it’s still VERY new that she just handles a straw cup like a pro.  So the combination, looking so “normal,” is just about overwhelming!  Long way to go still, but hooray!)

Monday, May 7, 2012

128/366 Busy Monday: Standing tall

Mondays are busy around here.  First I go to school.  Today, Mya came to feeding with me, and she helped me.  She is so good at teaching me new stuff.  Everybody should get to have a friend like that.


After nap, I go to swim with Miss S.

After swim, I get dried off and we pick up KiKi and Daddy so we can go to cheer!  Tonight I practiced climbing up and standing tall with my coaches.  The first time, I did a little better by doing my high-V instead of just holding on to them.

And then the second time, I did even better!  I let go and did a high-V way up on top!

KiKi likes to do the big stand-ups too.  Here was her first one tonight…

And here’s her second one, when they went all the way up!!

See me there at the bottom looking up at her?  I am not ready to be up that high yet, but yay for KiKi!

After cheer, we go home and go to bed. It’s a full day!  Monday’s are fun at our house!

Sunday, March 18, 2012

Big News!!!! Button Free!!!

Mommy note:  Tonight as we were leaving the in-laws’ house at about 9:45pm, I heard an “Uh-oh” and turned around to see PaPaw holding Braska button.  It was not attached to her. 

We all kind of paused, I said flippantly, and half joking, “Well, I guess we’re going to be done with that now.”  I then quickly had anxiety start creeping in.  Over the next minute or so, quick conversations happened, and M agreed that we were probably ready to just let it stay out.  We were 45 minutes from home, had no supplies with us to reduce the balloon (which was still intact, weird as that always seems to me) and put the button back in, so we had to make some decision pronto.  Break the balloon in order to get it back in and hold the stoma open---but we don’t have a back-up button at home---OR just call it done and move on.

I called our nutritionist right then, not realizing until it was ringing that it was 9:45pm.  After a quick chat with her, and her assurances that she felt Braska was also ready to let the button go (we have discussed this recently, possibly planning to take it out in the next month or so), I agreed that this was our pivotal moment.

This is the moment we have been working toward for 5 1/2 years. 4 1/2 years with the g-button. 

So we put a makeshift bandage over the stoma, which was not leaking one drop, even though she had just had a late meal, and gave hugs and goodbyes.

As we were leaving in the van, I said a quick prayer that it would be all good. That she will continue to do as well as she’s done.  That the stoma would heal quickly and without complication.  And that I could adjust to this new strange life.

Because it seems like it is a new strange life, and it’s only 90 minutes old.  I suppose when everything has been about feeding, and getting off the tube “someday,” and being a mom of a tube-fed kid, it just feels really odd to have a sudden change in identity and shift of goals. 

But it’s a good strange. A positive odd-ness.  I’m excited…

Braska did stop to look at what was happening, she seemed slightly confused, but went right back to wrestling and playing immediately.  She’ll not miss it one bit, if my guess is right.

So celebrate with us, pray for her continue progress, and if you’re on this journey, know that it CAN happen…  I am realizing that I never really visualized that this day would come.  But it’s here. And I’m going to have to adjust to this new button-free “normal.”