Thursday, April 26, 2012

27 Milliliters

I was reading over yesterday's post and marveling at how excited we were over 27 mls. I mean, think about it. 27 milliliters. It's not even an ounce! 


And then I read this, posted by fellow PWS mom Ali, on her blog Diving Into the Waves:


Imagine the game of life - not the board game, real life - and you set your child at the starting point to go forth. To most children, you give them the directions and watch them proceed through each event in the journey. It's not a breeze, but at least they have the resources to aid them in each challenge. Then our kids with PWS, you put them at the starting point, except there are no directions. They can't eat properly, so getting nutrients for fuel is tricky. Their muscles don't work properly, so moving through the steps ahead is tricky. Their brains don't fire appropriately and so they receive inappropriate, incomplete, or misdirected messages about what to do next. Forget the challenges, even navigating the BASICS is tricky for these kids. But they have to play the same game as everyone else does. Our kids are freaking champions.


(You can read the entire post here.)


And I realized why those 27 milliliters were such a big deal. 


I know how much work it was for Aerin to drink even that much by herself. It took days of drinking five to ten measly milliliters to get her muscles strong enough to tackle the big 27 and it will take days and weeks of small victories before we celebrate one big win again.


And my heart just grows in love for her and for all kids who have such challenges set before them. We all take so much for granted. So many blessings rain down upon us from a God who loves us so richly--and many of them we completely fail to see.


I count every one of those milliliters a blessing for my little champion.


video

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





Monday, April 23, 2012

Strong Enough

We've been home for a week now and life is marching right along. The days are a blur of pumping, bottle feeding, tube feeding, changing diapers, occupying the big kids and blissful moments of holding and gazing at my sweet girl. I've been reading way more about PWS on the internet than I should and I can't help but feel overwhelmed about the future. The challenges are many and I could easily list the worries that I have which accompany each one, but mostly I wonder how I will ever be able to be the mom she needs and deserves. I think I need to be picked up and thrown (very hard) out of my flesh because its just not doing much for me right now. 

Matthew West's song Strong Enough is my anthem right now. It just so darn hard to remember that God didn't put this in my lap and leave me to figure out out on my own. I don't suppose God gave me this because I am strong enough but precisely because I am not. It requires a great deal of discipline for me to remember each time I get scared or depressed or overwhelmed (which is often these days) that its not my job to fix it all, but to trust in Him as He does His work through it. Especially His work in me. He is, after all, strong enough



Strong Enough by Matthew West
You must
You must think I'm strong
To give me what I'm going through

Well, forgive me
Forgive me if I'm wrong
But this looks like more than I can do
On my own

I know I'm not strong enough to be
everything that I'm supposed to be
I give up
I'm not stong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
For the both of us

Well, maybe
Maybe that's the point
To reach the point of giving up

Cause when I'm finally
Finally at rock bottom
Well, that's when I start looking up
And reaching out

I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not stong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough

Cause I'm broken
Down to nothing
But I'm still holding on to the one thing
You are God
and you are strong
When I am weak

I can do all things
Through Christ who gives me strength
And I don't have to be
Strong enough
Strong enough

I can do all things
Through Christ who gives me strength
And I don't have to be
Strong enough
Strong enough

Oh, yeah

I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not stong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
Strong enough

Saturday, April 21, 2012

Happy One Month Birthday, Aerin!


Today we celebrate Aerin's one month birthday! It's hard to believe that everything we've been through has only spanned 4 short weeks! We thought this special day would be the perfect day to introduce our blog dedicated to the journey we've found ourselves on since Aerin's birth. From those first frightening hours when we didn't know what was wrong to the day that we found out she has Prader Willi Syndrome, it was our prayer that Aerin's life would bring glory to the Lord. We have found, at each step, that He has done just that: used our little girl to magnify His goodness in a broken world and to draw people close to Him. We hope you will walk with us as we walk in Him!