Happy Reformation Day!

Weight check = 6 lbs. 4.5 oz.

Here's Lilly reading the Sunday comics today. :)

My oldest daughter's favorite person in history is Martin Luther. So she was extra excited that today is Reformation Day. (Martin Luther nailed the 95 Theses to the door of the church in Wittenberg, Germany in 1517.)

We wanted to take a moment to thank everyone for your many prayers and your support. God has and is answering!

"The LORD bless you and keep you; The LORD make His face shine upon you, And be gracious to you; The LORD lift up His countenance upon you, And give you peace.” Numbers 6:24-26

Worth every tear ...

Today's picture is of Lilly during our homeschool nature study. It was interesting coordinating tree identification and leaf and bark rubbings with my oldest daughter, while taking Lilly and all her paraphernalia (pump, pole, and milk bag) all over the yard.


Today I read an article by former Pennsylvania Senator Rick Santorum, who's youngest daughter, Bella, has trisomy 18. The article, written May of this year, was celebrating Bella turning 2. (Yay!) As I read the article, I identified with so much of what Mr. Santorum said. It seems like so many of us that give birth to a trisomy 18 baby have the same sorrows, battles, and incredible joy. You can read the article, entitled "The Elephant in the Room: Two years worth every tear," at:
http://www.philly.com/inquirer/columnists/rick_santorum/92842239.html

Drumroll please ...

Weight check = 6 lbs. !!!!!!!!!!!!!!!!!!

Yes folks it's amazing, it's incredible, Lilly finally weighs 6 pounds!!

"Oh, give thanks to the LORD, for He is good! For His mercy endures forever." Psalm 107:1

Lilly had an echocardiogram today and met with her cardiologist. She checked out great! Her heart looked good, the cardiologist said the pulmonary artery band fit perfectly (and he complimented the surgeon's job on it), and there was no fluid buildup around the heart or lungs.

He reduced Lilly's Lasix medication to one dosage a day and said we could stop the Aldactone. (That means she'll now be on "only" 4 medications.)

Out of curiosity I asked was the size of Lilly's VSD (hole in her heart) was. He said it looked like it was at least 9 mm. (That is considered very large.)

Lilly goes back for a checkup in one month.

On a completely different note, in this last picture, Lilly is reminding everyone to get out and vote! (She's wearing her "I voted early" sticker.)

It's a love-hate relationship

When my oldest daughter, T., was about 3, she would tell people she had a "love-hate" relationship with Bob the Builder. (Yes she has always been very expressive.) I remembered her expression today after having another struggle with the NG feeding tube. And I understand what she means.

I LOVE the NG tube because it is keeping my baby nourished, gaining weight, and alive! I HATE it because inserting it and all the things that go with it can be really time consuming and stressful.

Today when I took T. to piano lesson, I left Lilly's pump and milk at home. Instead I took along a bottle so we could practice bottle feeding while T. had her lesson. Lilly did OK - she drank a few milliliters. Then when we got home, I hooked her back up to the milk pump, then went to go do something.

T. suddenly yelled that there was milk coming out Lilly's nose. I stopped the pump and checked the tube. It had about come all the way out! I was shocked as no tube has ever budged on Lilly before, but stayed taped in place. I felt terrible because I hadn't checked it first. (Learned that lesson! I'll be checking a lot more frequently now.)

Ok fine. I trashed the tube and got out a new one. But Lilly began crying and gagging everytime I started putting it in. At one point I thought it went in smoothly but it came out her mouth! Soon I felt like crying right along with her. I couldn't figure out why it wasn't working right. I've done this before without problems! Finally after a really upset prayer to God, the tube went in smoothly. So smoothly in fact, that Lilly hardly whimpered, even when it went through the "gag zone" (her throat). Whew ... thank you God ...

Tomorrow afternoon Lilly has an appointment with her cardiologist. I assume he'll have an echocardiogram done on her, or at least an x-ray to check the pulmonary artery band in her heart.

Christian-care

Weight check = 5 lbs. 15.5 ozs.

Here is Lilly sporting a new knitted headband made especially for her by A., sweet young woman. Yesterday at church, I had told A. that it was hard to find headbands small enough for Lilly and so she offered to try and knit one. It turned out so soft and cute!


Lilly is in my lap right now making the cutest little talking noises. She sounds like a cat at times.

My family does not have traditional health insurance. We are part of a very affordable Christian medical needs sharing group called Samaritan Ministries. That means that when we go to the doctor for something, we pay up front (as self pay - and we get amazing discounts I might add.) Then we submit our itemized receipt(s) to Samaritan Ministries' office. Shortly after that we began receiving checks from people in the group in amounts between $100-$300. We receive enough checks to cover the amount we submitted. (We also are instructed each month on who to send our check to.) It's a fantastic system of people helping people and thankfully we're allowed to continue it, at least for now, under Obamacare. ( www.samaritanministries.org )

One of the nicest things about belonging to this group is that people pray for what you need. Almost every check we receive has a card or note with it with encouraging words and/or scripture. We are so grateful for those many, many prayers from other group members going up for Lilly!

Here is an example of a note received the other day. "Behold, I am the Lord. . . . Is anything too difficult for me?" - Jeremiah 32:27 The person that sent that note added: "It's not the size of the mountain but the strength of the mountain mover."

Notice in today's last picture that "sneaky Lilly" has returned - she kept kicking her sock off again today. Her brother saw her do it several times and it really made him laugh.

Wearin' her Sunday best

Here's Lilly in the dress and bonnet she wore to church today. (It was a gift from a teacher at the school my husband works at. Love her in the bonnet! I like the more "old fashioned" dress clothes for my little ones.)

Lilly is almost over her cold, thank God. (And the rest of us are all about better too.)

"And He [Jesus] . . . healed all who were sick, that it might be fulfilled which was spoken by Isaiah he prophet, saying: 'He Himself took our infirmities And bore our sicknesses.'" Matthew 8:16-17

Pumpkin Patch Visit

Today Lilly and her siblings visited a local pumpkin patch. Her big sister was shocked at all the bumpy pumpkins - she thought they looked like they had warts all over. Lilly's brother was thrilled to sit on the different tractors and pretend to drive. Lilly slept the whole time.

While there, I briefly wondered if Lilly would be there with us next year when we go get pumpkins. I sure hope so!

"'For I know the plans I have for you,'" declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you.'" Jeremiah 29:11-12