Wednesday, April 25, 2012

His mercies are new every morning!

Yesterday we were feeling a little discouraged. Aerin was very lethargic and slept about 23 hours. We have to keep reminding ourselves that, aside from the issues surrounding her condition, she is still a newborn and will, for all intents and purposes, act like a newborn. I suppose it feels so very different because our other two NEVER slept!

Well, this morning our "sweet pickle" (as daddy calls her) woke up with the gang and was alert and active for a good 90 minutes! She did all of her exercises with daddy before he left for work, including all of the head exercises that mommy hates and always cheats on. ;) She watched big brother and sister romp on the bed before breakfast and then we packed up for our first outing--taking big brother to speech therapy. It was such a blessing to see her bright eyes wide open, just soaking up the world around her!

In addition to more awake time, she has surprised us with some good progress on her bottle feeding. Immediately following her surgery for the g-tube placement, the hospital staff stopped offering her a bottle (mostly because it took her so long to recover from the anasthesia and pain meds she was on--her slower than normal metabolism makes it harder for her to process those medications and it took her twice as long to bounce back) so when we came home, it was like having to start all over again. Since we've been home, she'd only take between 5 and 10 mls if she would wake up to take any at all. Yesterday afternoon, though, she took 27 mls! She has a really good suck/swallow, she doesn't have the muscle strength to keep up the suck/swallow sequence for very long. Well, it seems like all of her little "training sessions" finally paid off! 27 mls! We were ecstatic!

We discovered that there is an endocrinologist at the University of Florida who specializes in PWS, so we put in a call to get an appointment with her. We've heard wonderful things about her, she's written some great papers on PWS, and the pediatric endocrinology group that she is with is ranked 12th in the nation, so all in all we feel very blessed to be where we are.

Which is just where the Lord wants us to be--physically, emotionally, mentally and spiritually. 

I tell myself, “I am finished!
I can’t count on the Lord
    to do anything for me.”
Just thinking of my troublesand my lonely wandering
    makes me miserable.
That’s all I ever think about,    and I am depressed.
Then I remember something
    that fills me with hope.
The Lord’s kindness never fails. 
If he had not been merciful,
    we would have been destroyed.
The Lord can always be trusted    to show mercy each morning.
Deep in my heart I say,“The Lord is all I need;
    I can depend on him!”
The Lord is kind to everyone
who trusts and obeys him.
It is good to wait patiently
for the Lord to save us.
~ Lamentations 3:18-26

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