Friday, June 23, 2017

Last Day of Camp

In all honesty, I think Abby had more fun st Camp Leach than she would have at the real camp! Caleb and Anna didn't have as great a time as we had hoped and it seemed more like outdoor daycare than the real camp experience Matt and I are used to.  (Here's wishing we lived closer to Wananna!)

Today's camp activities included archery, dolls, and play dough.  Abby and her friend also decorated cookies,

 

And they painted more fairy houses and accessories!  Fun, fun times!
 

Abby was sent an awesome gift from a sweet teen we don't even know!  She mailed Abby one of her own American Girl dolls and an extra outfit!

 

It's been a fantastic week of Camp Leach, with one more culminating activity occurring this weekend.  The tie-dye kit didn't come in time, so we will tie-dye shirts this weekend!  This is apparently something Abby has been wanting to do for a long time, and we had no idea!  They did this at camp today, so Camp Leach will be tie-dying too!  

Abby was definitely showing her tiredness today.  Her respiratory rate was higher than it has been and her sats were lower.  I'm hoping she can relax tomorrow and SLEEP IN!  The girl has been waking up at 6 every morning!

Thursday, June 22, 2017

Another Fun Day

It was another busy day here at Camp Leach!  Another sweet friend of Abby's came to visit and the girls played so well together!  They both love dolls and has lots of fun with them.  We did chalk on the driveway and spent quite a while painting rocks for a new random acts of kindness initiative in our area.  So fun and cute!

 

 

After lunch, Abby and her friend enjoyed some Popsicles and Beauty and the Beast.
 

Matt's sweet cousin dropped off some ice cream (yum!!), and the kids thoroughly enjoyed their dessert!
 

I got Abby this little bubble blower at the dollar store the other day, thinking it might be fun respiratory therapy.  She did great with it and it made a ton of bubbles!!
 

Abby asked tonight if we could have camp next week too! :). Nope, this momma is pooped!  It's been a fun week though, and my girl has had a lot of fun.  That's all that matters !  

Wednesday, June 21, 2017

Surprise Visitors!

What a fun day!  Abby enjoyed spending time with a sweet friend from school.  They spent the day making bracelets, painting, coloring, and laughing...lots and lots of laughing!  Camp activities were a big hit today!

 

 

 


You should have heard the girls squeal when their teacher and Abby's one on one pulled up!!  We all enjoyed lunch together and then played an intense game of Uno Blast!  


It was a pretty fun day at Camp Leach!  Tomorrow promises to bring another fun visitor and new activities!  
 

Tuesday, June 20, 2017

Camp Day 2

Abby and Caleb both had a good time at camp today!  Caleb is building a fort in the woods and is enjoying the games they play.  It ended up that a friend from fencing is at camp too, so he has liked having someone his age that he knows.  Anna is having fun too!

Abby's mystery friend today was Lucy, and the two had a great time playing inside and outside today!  Shortly after this picture was taken, they got absolutely drenched. Or as Lucy says, "drunked!"  😃

 

The fairy houses are coming right along and we should finish by the end of the week.  I'll try to take a picture tomorrow.  

I have some new tricks up my sleeve for the rest of the week.  Abby told me that this week has been really fun so far--not as fun as the real thing, but fun! 😂. I'll take what I can get!

Monday, June 19, 2017

The New Normal

We are adjusting to our new normal at home.  Chloe is loving having Abby home and follows her around most of the day. She definitely missed her!

 

We are all very happy to be back together again.  Life is different though. Abby has lots of respiratory treatments and medicines throughout the day.  We realized very quickly that going up the stairs was too hard for her when she collapsed at the top of the stairs.  Now, we do everything that needs to be done upstairs before she goes down.  Then she doesn't go back upstairs until bed (and Matt has been carrying her).  She tires easily and coughs a lot. 10 minutes outside yesterday was too much for her and she was gasping for breath.  It's frustrating to her that she can't be as active as she was.

We are hopeful that it will get better and are trying to make things as fun as possible.  Since she's missing the camp she was supposed to go to this week, we are having camp here!  We did arts and crafts, water play, nature time, making fairy houses, computer time...all of the regular camp activities!  She loved it today.  For the rest of the week, she will have surprise visitors come to camp too!  She knows she will have visitors, but she doesn't know who.  I know she will be very excited!

 

 

Wednesday, June 14, 2017

And We're Outta Here!!

We are on the road and heading home!!  We had a bunch of stuff to get through today, but it all got done and we are outta here!!  Soooo excited to go home!

 

Tuesday, June 13, 2017

Family is the Best Medicine

Abs had another fun day with her cousins and Aunt Amy!  They played in the playroom for much of the day, played s very silly frog eyes game, and also watched the new Beauty and the Beast that Aunt Amy brought for Abby!

This afternoon, Abby went to the pulmonary clinic for a pulmonary functioning test (PFT). Abby has had many over the years and is very used to these.  She has been holding strong at 40% lung volume for several years, the last test being at the end of March.

Abby worked very hard today during her PFTs and was fully cooperative.  Unfortunately, her lung volume was at 16% today.  The respiratory therapist felt this was a very valid test.  We haven't talked to the pulmonologist since the test, but we know that having lungs this weak will make her even more susceptible to germs and that a little cold could make her very ill.  The resident attributed this sudden decline to the combination of the right VEPTR being removed and the sepsis attacking her respiratory system.

My germaphobic ways will be kicking into high gear, and we will definitely have to be even more careful with Abby. We are anxious to talk to the pulmonologist tomorrow to find out more about what this means for Abby.