Now What?

I knew I would do this... I post this long explanation about what's going on with Demi and then I'd take forever to post something else (because I have so much extra time on my hands, right?!).  I'll try and fill y'all in on what's been going on with us the past few weeks. 

We've been going to lots of therapy appointments (feeding therapy and physical therapy).  I've started calling them "Therapy Thursdays" because all of our appointments will be on Thursdays so hopefully we won't have to drive to Houston more than one day a week!  And we can go ahead and schedule other appointments that same day so we can get it all done in one day.  Sounds fun right?!  Demi is a trooper though while I tote her all over TCH, plus I have an excuse to get me some Starbucks!  And if you know me at all, you know that is verrrrry important!

She got her "button" put in for her feeding tube a couple of weeks ago.  For a month after her surgery, she had this long tube thing that was kind of a hassle.  This is the second time she's had this, since they ended up having to move her G tube site over a little bit during the last surgery.  It has to heal for about 4 weeks and then they yank that out and place what's called a Mic-Key button in that is alot smaller and really easy to operate.  Yep, that's as painful as it sounds, and no fun at all to watch.  But she only has to have that done once, so she should be good to go now.  We also had a great checkup with her GI doctor.  Her upcoming appointments in the next few months will include a checkup with the plastic surgeon (he will fix her cleft palate) and her orthopedic surgeon (to see if she needs another procedure on her feet when they fix her palate), along with her regular pediatrician and therapy appointments. 

The most exciting thing I can share with you is the progress we've made with her feeding issues!  Hang on, I'm going to go knock on some wood before I tell y'all about this... Anyway, so before Demi's first surgery, she had back-tracked ALOT and would only take about 5 - 10 mL by bottle per feeding, and then we would tube the rest (each feeding is 180 mL).  So she was barely taking anything.  We think part of the reason was because she had an NG tube (the kind that goes in your nose to your stomach) and that makes it harder to eat.  This was irritating her throat and she got to where she wanted nothing to do with the bottle.  After her first surgery, where she had the G tube placed (the kind that goes straight to the stomach) she worked back up to taking about 10 mL each time.  Well, after her surgery in May, she worked up to taking 20-30 mL by bottle each feeding.  So once she got to where she consistently took 30 by bottle consistently for about a week, I went ahead and bumped her up to 40 just to see what happened.  And she took it, no problem!  After a few days of that, I bumped her up to 50.  Now we are up to 60 and she's been taking that consistently the past couple of days!  Plus she seems to be doing a little better with baby food.  This is the MOST progress she's ever made, so as you can imagine I am super excited!!!  My mind is usually consumed daily with trying to figure out ways I can help her out with feeding.  Literally.  So after almost 9 months of trying everything possible to make things move in a more positive direction, here we are!  I am still confident that she won't be on a feeding tube forever, but I can't predict the future.  But what I can do is pray about it.  Alot!

Most of all, I've been feeling very thankful lately.  Thankful that Demi is here and healthy for the most part, thankful that we have 2 sweet and helpful 4-year olds,  thankful for a husband that holds us all together (I could write a novel on that one!), thankful for family and friends who are always willing to help out.  I could really go on forever.....
I'll leave you with a few photos of stuff we've been doing the past few weeks.  We've been busy!

At the zoo with their friend, Paisley (aka Baby Paiswey)!

Madeline feeding some giraffes.  This was SO cool!

Hannah brushing the goats.

Demi playing with her toys on her mat.  Her favorite thing to do!

Happy 4th of July!  Notice Madeline's swollen eye (on the right).  She got bit by a mosquito the other day right on her eye.  Yep, she's the same one who had TWO black eyes in the past month.  Poor girl can't catch a break!

Hannah and Demi playing.

Demi's first time swimming!

Me doing what I do best!

 

I'm thanking you, God, from a full heart, I'm writing the book on your wonders.  I'm whistling, laughing, and jumping for joy; I'm singing your song, High God!  Psalm 9:1-2 (from The Message)