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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Saturday, November 30, 2013

Day 2: Remembering Lilly - August 2010

This is my 2nd post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

August 4, 2010 - September 3, 2010

Lilly wearing a dress from one of Tabby's dolls

Lilly turned one month old on August 4 and within days, we had cancelled hospice.  Yay!

We also started the search for a heart surgeon to repair her VSD.  (She had a large hole in her heart, and a 2nd smaller hole.)  Even though we live near several excellent hospitals, she was denied heart repair surgery because of her Trisomy 18.  (The team claimed it was "unethical" to repair her heart since she was going to die soon.)  We were not surprised though, as we had been warned it could be hard to find help.

We did however, find an excellent cardiologist that was local.  Dr. R was kind but seemed a bit hesitant in working with us at first.  But as Lilly continued to survive month after month, Dr. R became one of her biggest supporters and always greeted her with a big smile.  After examining her heart the first time, Dr. R prescribed Lasix for her.  She remained on that drug until after her second heart surgery.

I began adding in formula to the breastmilk Lilly was drinking to try and get more calories into her, as her weight was slowly dropping.  That stabilized her for a bit.

She was still tiny but alert.  Tabby and I said she was like having a living baby doll and we loved dressing her.  She wore preemie sizes for awhile, my only baby to ever do so.

Through our Now I Lay Me Down To Sleep photographer, we found out about Focus on the Family looking for pictures to use in a new booklet they were publishing called Gift of a Lifetime by Tammy Tate.  (The purpose of the booklet is to give information and resources to expectant parents that receive the news that their baby may not survive birth.)  We agreed that our photographer could submit some of the pictures he took of us with Lilly.  Amazingly a couple of our photos were selected!  It was really special to receive several of the booklets from Focus on the Family and see the photos and know that many many other people were seeing Lilly too!

Towards the end of the month, Lilly's weight began dropping again.  (A few ounces can make a big difference!)  I could tell she wasn't always feeling comfortable either.  Sometimes at night, she was only able to fall asleep laying on me.  We knew her heart needed help soon!

"My help comes from the Lord, who made heaven and earth." - Psalm 121:2

Friday, November 29, 2013

Day 1: Remembering Lilly - July 2010

This is the 1st post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

July 4, 2010 - August 3, 2010

Lillian Eva entered this world quietly in the early morning of the 4th of July, 2010.  Her first victory outside the womb was surviving birth!  (Many babies with full Trisomy 18 do not.)  She weighed in at 5 lbs. 4 oz. and was 18 inches long.  Within a few hours she was drinking from a bottle.  About 6 hours after birth, we left the hospital so Lilly could go home and meet her siblings. Her strength surprised the doctors and nurses so much, she got the nickname "Little Firecracker."

Four days after leaving the hospital, a photographer from Now I Lay Me Down to Sleep came to our house to take free remembrance photos of Lilly. 

On Lilly's first Saturday, she suddenly began having "seizures."  (I'm calling them seizures but we never found out for sure what they were.)  She would suddenly stop breathing and turn blue.  Then she would gasp and begin to breath again.  Some were so bad Frank had to breathe into her nose and mouth to get her to start breathing again.  I remember holding her and crying and saying "Please Lilly, don't leave me.  I need you!"  God spared her.  After a number of these "episodes" that afternoon, they suddenly stopped and Lilly never had one again!  When she seemed back to normal, I quickly took some pictures of her:

Since we didn't know if the "seizures" would start again - or what exactly might happen - we got set up with hospice.  But as the hospice nurses came day after day to check on Lilly, I started to get annoyed.  It seemed to me they were patiently waiting for her to die.  (That's their job anyway.)  But  Lilly was growing more and more alert every day!  She continued to drink breastmilk from her bottle and slept pretty well.  We bathed her, went on walks with her, and did "normal" baby things with her.

We all adored her!

"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." - Jeremiah 29:11

Thursday, November 28, 2013

Happy Thanksgiving!

girl riding a turkey ornament on Lilly's tree this month
We had a busy Thanksgiving day, doing a variety of things.  A new tradition we started this year was our first ever "turkey shoot."  I printed paper turkey targets for the event.  Solomon and Tabby shot the turkey with arrows:

We also had fun with Tabby's pink b.b. gun.

The ONLY one of us to actually hit the turkey - inside the turkey target outline - was Hunter!  (The rest of us had nice groupings but all outside the turkey!  Need to adjust those sights ...)

I attempted taking pictures for our annual Christmas card.  Wow was that hard!  At first we had all three kids, plus a couple chickens, and one of the goats in the group.  The goat did not cooperate.  Then it was hard to get one with all the kids looking good.  Tried some other places in the yard but I don't know yet if I can use any.  Somebody always blinks or frowns or cries or squirms or something!  LillyBear was the only "child" that consistently photographed easily:

Check out Tabby's Thanksgiving photo collage she did for today on her blog, The Goat Chick.  (Click here.

I found this sweet photo on my camera that Tabby took.  She did the embroidery behind the bunny.  (It's 3 chicks, a hen and a rooster, and a 4 seasons tree.)  The bunny was Lilly's.  Tabby made a skirt for it and jewelry and added a chicken feather.

Tomorrow I am going to begin a special series remembering Lilly's 17 months of life.  (Tomorrow marks 17 days until Lilly's 2nd angelversary.)

I'm missing my little Lilly pumpkin as I think about that!

Lilly pumpkin 2011

Lilly's 1st Thanksgiving - 2010
"giving joyful thanks to the Father, who has qualified you to share in the inheritance of his holy people in the kingdom of light." - Colossians 1:12

Monday, November 25, 2013

Changes on the farm

"As far as the east is from the west, So far has He removed our transgressions from us." - Psalm 103:12 

This scripture popped into my head Saturday as the two Great Pyrenees, East and West, left our farm and headed back for home.  Yep!  The beautiful chicken killing goat protectors have left the premises.  The chickens cheered but I actually miss seeing their big fluffy white bodies.  In spite of her fury against the dogs, Tabby feels the same way.  We've already decided we'll have to go visit them soon.

Here's a picture from last week of Hunter hugging one of the dogs:

This past Friday night we got together with L family to "talk goats."  Yes - we have decided we want to keep some goats!  Since goats can get lonely, we decided on two.  Plus that will help keep the milk supply up a little more than what we're getting right now, with just one milk goat, since they go into heat this time of year and the milk supply drastically drops.  So we talked and worked out a general plan and strategy.

On Saturday the L family bought a buck (boy goat).  They took him to their property.  (Their house is still not quite finished being re-built, but it should be by early January.)  Then they came and got East and West and one goat, Daisy.  Today Mrs. L is planning to come and get three more goats to pack into her minvan:  the Spice girls (Nutmeg and Cloves) and Pip.  The purpose:  breeding.  

Why not do it here?  Because they said the bucks can get really mean during this time to anyone coming into their pen, and they didn't want Tabby to be in any danger when she goes to milk Christa. Plus Mr. L said bucks are extra stinky!

"Big Christa" and her kids Daisy, and Buck
Speaking of Christa, or "Big Christa" as Hunter calls her, we are buying her from the L. family.  We are not going to breed her, but just keep milking her.  (We're only getting about a cup a day right now.  Still trying to "save up" to get enough to make another batch of goat milk soap!)  We will also be keeping Christa's son Buck here for now.  He will keep Christa company.  Then the L family will take him home and eat him.  (Did you know goat meat is commonly eaten in other countries, such as India and Africa?) 

We are planning to buy Nutmeg, the little goat on the right.  These girls are both sweet and pretty goats:

The "Spice Girls" - Cloves and Nutmeg
Pip is our children's favorite goat.  She is very social, probably because she was the goat we bottle fed for so long.  The L family is giving her to Tabby for free as a pet, and Tabby is going to help pay for her "room and board" here.   She will be our "take a chance goat" as we are going to try and breed her.  Her mama was not a good milker and Pip's sibling died (probably starved).  Her mama had to be put down shortly after coming here. Pip should be able to have babies fine, but we don't know if she will be able to produce milk.  Apparently when a nanny goat has trouble making milk, her babies tend to have the same problem.  But we will try and see.  If we need to bottle feed any babies then oh well!  The kids (and I) love doing that!

Here's some pictures from last week of the goats playing "follow the leader" with Hunter:

Tabby was glad to have gotten some pictures of the dogs last week:

Tabby and West

And what blog post would be complete, without a picture of Solomon?  This kid has become a climbing machine:

Thursday, November 21, 2013

The Carolina Lily

I recently learned that North Carolina's state wildflower is the Carolina Lily. (Read about it here.) I just thought that was so neat!

Of course it reminded me of another Carolina Lilly. A "Lilly" with two-Ls.

This summer I purchased Veritas Press's "Fine Art Primer Collection."  We've read several so far, and always do a related art project afterwards.  The other day we read The Boy Who Loved to Draw:  Benjamin West by Barbara Brenner.  Then in the spirit of Benjamin West, I had the kids take their sketchpads outside to draw something.

Tabby focused on real subjects:  a chicken, a goat, a dog, and then Hunter.  Hunter drew the dryer vent on the back of the house and then one of the chimneys.  (That is sooooo Hunter.)

During this time, Solomon kept busy opening and closing gates and doors.

Hunter enjoys bringing in the basket of chicken eggs each morning and then putting the eggs into cartons in the refrigerator.  Frank was afraid he might break eggs in the process of carrying around the basket, so he added straw into the bottom so the eggs wouldn't bump together when Hunter was running around with it.  Sounded like a good idea.  Now I don't think so.

Yep.  Hunter forgot and left the basket on the floor and Solomon managed to make this mess in about 2 minutes when I was busy around the corner.  This kid is lucky he's so cute!

"Rejoice in the Lord always. I will say it again: Rejoice!" - Philippians 4:4

Sunday, November 17, 2013

Grosser than gross ...

 Last week, Tabby put our "Goat Chick's 'Udderly' Natural Goat Milk Soap" put for sale on her blog, The Goat Chick.  Two days later we were sold out!  Unfortunately for us, fresh soap can take about 6 weeks to cure, so there won't be any more for sale until close to the end of the year.  Another problem is, Christa the goat is in heat and that means she's only producing about a cup of milk a day, if that.  (This is supposed to last until January or so.) 

Last week we carefully saved up most of our goat milk until we had the required amount for the soap.  Then this afternoon we started to make more.  But I made a big mistake.  I put the lye into the goat milk too quickly.  Tabby pointed out the milk was changing from white to orange and smelled funny.  OH NO!!  I quickly checked the temperature.  140 degrees!  (It's not supposed to go over 100 degrees.)  SIGH.  Batch ruined.  Very disappointing.  We'll have to save up more milk again ....

During this time, Frank was outside with the boys.  Hunter was jumping off this little shed into a pile of leaves:

Solomon was chewing on this yucky wisk out of the sandbox:

You can see he was eating sand and dirt too.  Yuck.  I sighed when I saw his face.  Frank said he just couldn't keep him from eating stuff.  I said "I know ... I just hope he doesn't eat chicken poop!"

Shortly after that, Tabby and I were attempting to work on embroidery and Frank called for me to bring Solomon some water.  He said, "Your worst nightmare has come true ..."  Water for Solomon?  I took the water outside and stared.  OH HOW DISGUSTING!  Frank caught my cute little boy eating chicken poop!  YUUUUUCCCKKKKK!!!!!

Wanna kiss?
Frank assured me it was "just a little bit."  Well "just a little bit" is a little bit too much in my book!  It reminded me of when my cousin C. was little - apparently he used to sit in their cat's litter box and eat cat poop.  (OK - I'm sure you're wondering why you are still reading this post!  Maybe we all need some goat milk soap to wash our mouths and minds out with at this point ...)

Yesterday Tabby brought this cute bird to show me - it had flow into the goat pen and East-the-chicken-killer bit it.  

 Tabby wrapped a bandage around the bird where East had bit it, but it died shortly after.  East hasn't escaped from the goat pen lately but she continues to find ways to stay on Tabby's "I don't like you!" list.  (The builder re-building the L family's house (from the fire) thinks it will be done by the end of this year.  Tabby can't wait for the dogs to leave.  Though in the next breath she'll say "they're such beautiful dogs.")

Here's a really cool picture of the moon that Tabby took last night:

Finally, I'll leave you with a smile - don't you love the "bed head?"

Have a great week!

“‘“The Lord bless you and keep you; the Lord make his face shine on you and be gracious to you, the Lord turn his face toward you and give you peace.”’ - Numbers 6:24-26

Friday, November 15, 2013

Homeschool fun: Reformation Day celebration

If you read Tabby's last post, you know there were 2 more deaths here on the farm this week.  NOT chickens though.  This one was completely surprising and rather unsettling.  Gerbils.  Tabby's gerbils, Martin and Katarina Luther apparently had a fight to the death (of both of them!) on Sunday night.  I know the real Martin Luther was reported to have a fiery temper at times - but we don't know if it was his namesake or Katarina which started the fight.  Results were not pretty though.  There was blood .... 

We were glad to have the gerbils with us this past Reformation Day though:

For our school day, this past October 31, we focused on the Reformation.  Unfortunately Tabby wasn't feeling well so she was only able to join us for some activities.  Hopefully we can do more next year.  I thought I'd share our activities, so maybe you'd be inspired to celebrate it next year!

First though, are you thinking "What in the world is Reformation Day?  I thought October 31st was just Halloween!"  Well in 1517, the famous theologian Martin Luther nailed up his 95 Theses to the door of the Wittenberg Church in Wittenberg, Germany.  This was a list of Luther's questionings of the Catholic church regarding things such as the sale of indulgences.  (Indulgences allowed people to buy their salvation.)   This event sparked the beginning of the Protestant Reformation.  (You can read more on this German website on Luther here - and yes it's written in English!)

Our home celebration started with me taping up a printout of the 95 Theses and the boys "nailing" it into place:

Next we read a children's book about Martin Luther called The Barber Who Wanted to Pray by R. C. Sproul.  It doesn't talk about the 95 Theses but is an excellent book.  I had wanted to buy gummy worms to eat while we read it but couldn't find any so I bought red licorice as our worms.  This was to remember the Diet of Worms that Luther was a part of.  Now there were no real worms involved in that one, but I explained to Hunter that Worms was a place and "diet" here meant a formal, deliberative assembly.  Luther was answering to accusations about his writings and teachings and ordered to recant.  He didn't.  He was labeled a heretic because he was writing and speaking things in disagreement with the Catholic church.

After that yummy - but hyper inducing! - snack we learned about the "Luther Rose."  (I had downloaded the information and coloring pages free here from CurrClick.) Luther's rose was a seal that had been commissioned for Luther in 1530.  Luther came up with the colors and symbols himself.  (They're explained in the free download, so I won't take the time to type them out here.)

Next we gathered around the computer for a few video clips on the Reformation on YouTube.  The kids very favorite one was this clip, done with Lego people showing Luther hammering up the 95 These.  (It made me laugh too!)   

After that, Hunter played a rousing game of "Match the Beard to the Reformer."  It was pretty funny!  (I got this game and several other activities from an e-book called "Reformation Day Activities" - also from CurrClick.) 

How about "pin the beard on the Reformer?"  This print out of John Calvin's face and beards was also from "Reformation Day Activities."  

Then we played "hide the heretic."  After some discussion, we decided that Luther wasn't the heretic - the Pope was!  So I hid a picture of Pope Leo X and the kids searched for it.

Then it was time for writing and I had Reformation notebooking pages from The Notebooking Fairy.  Obviously Tabby did more writing than Hunter.  But he did a little copy work.

We wrapped things up by making some Reformation day bookmarks:

That night, we enjoyed a German themed supper as a family.  I had thought it would be fun to dress up, but never made it up into the attic to dig out my Renaissance fair outfit.  The menu:

Green salad with a German dressing, bratwurst, mashed potatoes, and (root) beer to wash it down:

For dessert I made apfelkuchen, which is a German tart:

It would have been nice to watch a movie on Luther's life, but with little ones it's hard to get in much movie watching.  Also, one other excellent resource on ideas for activities is Doorposts' book A Night of Reformation.  (Read the description on Doorposts website here.) 

I'll wrap this post up by sharing one of Luther's very favorite scriptures:

"For I am not ashamed of the gospel, because it is the power of God that brings salvation to everyone who believes: first to the Jew, then to the Gentile.   For in the gospel the righteousness of God is revealed—a righteousness that is by faith from first to last, just as it is written: “The righteous will live by faith.” - Romans 1:16-17