Highs and Lows

I miss seeing these squinty eyes....

and this sweet smile...

and this laugh...

When we first arrived home Lily was eating her liquids well and we saw a few glimpses of her fun personality come out...she wanted to play the piano, read books and hang out with her big brother. 

The past few days have been a little rough and Lily is pretty much sad and uncomfortable.  She just wants to be held and sleep most of the day.  She cries when I give her anything to drink so many times we resort to a syringe to feed her.   

As you can see the pictures above...her tongue is out in all of them and the drooling is excessive. 

We noticed some white patches on her tongue and e-mailed a picture to our doctor over the weekend.  Her nurse called me at 9pm Saturday night (another reason we love our doctor) and called in some medicine for a yeast infection she had developed in her mouth.  Lily wasn't thrilled to have two more medicines added to the list but we can already see some improvements and hopefully she she is beginning to feel it too.  

Below are pictures of Lily with Dr. Buckmiller and her nurse Emily right before surgery.  She was making them laugh with her squinty eyed smile.  I printed out a picture of her doctor a few days before her surgery so that she would recognize her when we met.  When I showed the picture to Dr. Buckmiller she made sure to wear the same hat the day of surgery that she was wearing in the picture.  Lily definitely recognized it when they both walked into the room. 

Lily loves to curl up in a ball on her tummy when she sleeps with her feet tucked up under her and her butt sticking straight up in the air.  I find her this way every morning snuggled up in the corner of her crib. Even the no-no's (arm splints) haven't stopped this girl from getting into her favorite position...she just has trouble breathing this way right now so she isn't sleeping well at night. 

 

pre-sugery without her no-no's

We take shifts eating dinner so she doesn't have to watch us eat in front of her.  Lily loves all kinds of food so I'm sure it would be difficult for her to understand why she can't have what we do right now.  I talked with a parent who told me they did this when their child had palate surgery and I'm thankful for the idea because I'm not sure I would have thought of it on my own. We are two weeks and counting until our follow-up appointment and we pray her mouth will have healed enough to begin some soft foods at that point. 

Lily continues to be brave and resilient through it all.  She has such a calm and gentle spirit and a strength within that will serve her well as she walks the road God has set before her.  It could be a lot worse so I try to focus on the positive and be thankful and content for where we are right now in the healing process.  Every day gets better and it is one step closer to hearing her say her first words...oh, how I look forward to that day!

We are all called to speak up for those who cannot speak for themselves...we are so grateful that God has entrusted Lily to us and we will be her advocate and voice through the valleys and mountains we climb together.  

   

"Speak up for those who cannot speak for themselves..."  Proverbs 31:8a