Saturday, July 25, 2015

Sleeping Soundly

We got the results from Abby's recent sleep study back yesterday, and we got fantastic news!  She NO LONGER has obstructive sleep apnea!!!

The results of her last sleep study, done a little over a year ago, showed that she had severe obstructive sleep apnea (15 episodes an hour!)  Her jaw distraction did its job and fixed the problem!  That surgery was NO JOKE, so we are very happy with the results.  It would have been awful if she had gone through all of that agony without any improvement.  But it worked!!!  Yippee!!!  So thankful to God for this gift!

Hopefully, this will make Abby's recovery from surgeries much easier.  We'll see in 10 days!

By the way:  sorry about the weird post this morning.  My account apparently got hacked, but I changed passwords and deleted the post.  Hopefully, that will take care of it!

Thursday, July 16, 2015

Tubie Time

Abby had a feeding clinic appointment today.  They were thrilled that she is becoming more independent with her eating and drinking!!

Unfortunately, she has lost about 4 lbs since her last clinic appointment, which is a big no-no.  So, she's back on extra tube feeds for a while...probably a few months until she recovers from this next surgery.

We knew she would be off and on with tube feeds, but I would lie if I didn't say it is disheartening to hear she isn't getting enough when we work SO hard to get her to eat!  And she is working so hard too!!  She's made great progress with drinking her milk from a straw (yay independence!!!) and increasing her volume of food.  So it's frustrating for everyone when we have to add a tube feed.

Then again, I'm thankful it's as easy as a tube feed!!  This is exactly why we put the tube back in.  Instead of constantly freaking out over weight, I can just pour 6 oz in and move on.  She can still eat and we can all still marvel at the new-found enjoyment she has of eating!

In other, related news, her next VEPTR surgery is August 4th.  She's being admitted on the 2nd to get a picc line put in.  She asked me the other day when these surgeries would be over.  It broke my heart to tell her she will most likely have them for 9-10 more years. She is such a tough, brave, joyful little girl.  

Sunday, July 5, 2015

Good Trip, Great Friends!

Matt and I have been good friends with K since we went to middle school.  We've grown up, she's grown up, we've all gotten married, she moved to another state...but we have still remained friends.  We love her husband R too, so it was wonderful to be able to spend a few days with them at their home.  They were such gracious hosts with a beautiful house!

Their 3 kids are so much fun, and we absolutely loved playing with them!  Abby and Caleb haven't stopped talking about how much fun they had with them.

R is a doctor, so he had to work during the day.  We enjoyed lots of quality time with K and the kids!

One of the first things we did was visit the Sturgis Pretzel Factory, which was lots of fun.  The kids learned how to roll pretzels and enjoyed a yummy soft pretzel after the tour.

Then we went to a local park to feed the ducks and play on the playground.  Unfortunately, K's oldest got badly scratched by a dog that got scared when she tried to pet him, and she had to get some stitches.  Good thing her daddy is a doctor!  It sure was a traumatic experience.  Poor sweet girl!

The next day, we went to Kitchen Kettle Village to let the kids graze among the free samples and look around.  I got my yummy Chow Chow and we let the kids play on the playground and visit the petting zoo.  (This made K a little more nervous than usual, given yesterday's events, but all was well!)  

I really, really loved these alpacas!!

The highlight of the trip was Dutch Wonderland!  If you've never been there, it's a fantastic amusement park for the little ones.  Caleb still liked it, although 8 is probably the max age for enjoyment.  It's perfect for preschoolers though!

We learned that Abby's tolerance for rides is pretty low.  Anything that swung her or jerked her at all made her back hurt, and I also noticed that she really had no control over her body when she spun around.  While I could hold myself up during the teacup ride, she had to be held really tightly to keep from bashing her head into the side of the ride. rollercoasters for Abs!

They had a whole forest of animated dinosaurs that we really fun!

We even managed to get in a little PT during our trip.  These hand trains were a workout, but she did great!

The dive show was a big hit with all of the kids.  

Abby and K's oldest are the same age, and they had a fantastic time together!  

Honestly, despite all of the fun we had, I have to say my favorite times were our late night talks with K and R.  Our discussions about Truth, parenting, and life in general were so refreshing.  God is in every single part of their lives and I'm so thankful for their insights.  I wish we lived closer (K tried desperately to get us to buy the house 3 doors down!), but it was so fun to "do life" with them for a few days.  We love you, K and R!!!!!!

Saturday, July 4, 2015

Happy 4th!!

God bless the USA!

Friday, July 3, 2015

On Guard!

Caleb has started fencing lessons.  We found this multi-generational fencing group that teaches all levels and allows you to borrow equipment--all FREE!  

Let me just say, this is the best money I've never spent!!!

This instructor is very patient and a good teacher.  He's been fencing for over 20 years and definitely knows what he is talking about.

The boy LOVES it!!!!

I have honestly never seen him so focused and serious about something.

He practices every day and teaches others how to fence too. 

I think he has found his niche!  It may not be the typical sport for an 8 year old like soccer or baseball, but it is perfect for Caleb.  I'm happy that he's happy.  :)