"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Monday, December 1, 2014

Highs and Lows

So I started to write an update about regular life, and never got around to posting it. Meghan however decided it was time for an update so here goes...(and I'm working on very little sleep so bear with me).

She had had a bit of a rough week with an invasive test of her urinary system. Meg is really never dry, and has not ever been, and with her history of a tethered spinal cord, she's at risk for damage to the nerves that help control urination. She had to be awake for the testing to be accurate so she had to endure some difficult moments. Out of that we found out that she is in fact incontinent and will not be able to hold her own urine without surgery. The catch is that if she did have the surgery, she wouldn't be able to urinate at all without a catheter. Major bummer. In the grand scheme of life, not a huge issue, but my heart breaks for her self esteem and quality of life in the future. She came through that ok, and we enjoyed a wonderful Thanksgiving with family. 

Saturday evening we got to hang out with Meghan's runner Dawn and her family. She was totally fine and we had a fun evening. Yesterday when I got up, Meghan was still sleeping, which is unusual- she's usually my little alarm clock. When she was only stirring at 9, I decided to go in and check on her. I'm glad I did because she was lethargic, and began vomiting. I discovered that her overnight tube feed had not run in as it should have, so I thought maybe she needed some fluids to get her going. I gave her pedialyte and she drank some water but continued to throw up. Since she was still acting really off, and she didn't have a fever to point me to a clear viral illness I became concerned about her shunt and we decided to head into the ER. After we got her all checked in, they tested her blood sugar and it was really low. That hasn't ever happened before. We got an IV in and gave her some sugar, but she didn't perk up as expected. The neurosurgery team came and ordered tests for her shunt. After we were (thankfully!) able to rule that out as a cause for her symptoms they admitted her for her low blood sugars. They disconnected her IV for the ride.
  After we got settled upstairs, they rechecked her sugar. It had dropped again. After some more sugar through her IV, we tried giving her her regular feeding through her tube. At a slower rate she dropped her sugar yet again, but after we bumped her up she began to stabilize. This morning she's doing much better and they are getting her endocrinologist to come and consult today and help us figure out what's going on. 

Thank you all for continuing to pray for her. We just continue to take each day as it comes by the grace and strength of the Lord. 

Big sister face time makes for some good medicine:)

"Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.” The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord."
—Lamentations 3:22–26