So much

There is so much going on around here!  I hate the long breaks in posting, but I never know what to say.   

Every day is so full and busy, but so often the same. 

We had a birthday part for the girls, which turned out nice for everyone except Emily and Abby.  They loved seeing family, but it was a lot for them.  Emily doesn't love crowds and mostly stayed by Grandpa.  Abby was horribly nauseous.  I finally had to turn her feeding off.  She just can't handle much activity.  I took her almost a week to recover. 

Abby's only time standing to bowl

Happy Birthday Abby! 

And Emily!!

Emily playing with Grandpa and cousin Jack



The face we saw most of the day as she wished she could throw up. 

I continue to struggle through the days with her. Always torn between what I want and what I have.  Hoping desperately for single days when she feels good and dealing with the reality of how rare they are. 

We took her back tot the GI doctor and learned that she had lost 5 pounds since October.  It's too much.  she weighs 60.8 pounds.  She needs to be about 75 for her height.  They would settle for 70.  She can't go back to school because anything (illness, fatigue, stress) that would cause her to lose weight would tip her over the edge.  We went up on the fluids again to a D15, again, any extra calories.

The last few days she has run a low grade fever, 100.3 yesterday.  She has an ingrown toenail that is having some trouble, so I'm hoping it explains the fever. 

In other news, Hannah and Sarah are great.  Hannah continues to love school. 

Sarah is the proud new mother of a furry toddler. 

My sister thought this was laundry, but it's just Sarah's unmade bed!  LOL

I feel like I'm wearing my stupid stamp for dealing with a puppy.  But I also feel like it's hard when Emily and Abby take up so much of our time to give Sarah some of what she needs.  She's asked for a dog for 4 years and it was never the right time.  It still isn't.  But she'll be 12 this summer and I don't think anything is going to be different anytime soon.  She's a really responsible kid and she LOVES this dog.  We all do except Abby.

We've had her for a few days now.  She's a lot of work, but learning fast and an absolute sweetie.  I think I needed a little ball of love too.  We all love Nola, but she is Emily's dog and very bonded to her.  We love on her, but we're mindful of the fact that Em needs to be the primary love giver.  Nola isn't so sure about the pup, but she puts up with her.  Yesterday they napped together...sooo cute! 

As usual, we have so much to deal with, and yet so little changes.  Everything in me knows that regardless of circumstances, who I am should not move.  But when faced with a world that doesn't yield, a child that doesn't get well, a heartache that doesn't ease, I move.  Ever so slightly, I change.  My natural optimism feels like well rehearsed lines.  My faith occasionally becomes marked with a question, rather than a firm period. 

It wouldn't do any good to write this blog as if I always handle things well.  I don't.  I am learning and moving as I go.  I pray for answers and something besides me to change a little, and wish for days filled with not quite so much.