Monday, October 31, 2011
Anyway, my family loves any excuse to be on a farm, so we really enjoy this annual celebration. (We are praying that we will one day have our own little farm.) We enjoyed some food including delicious cake, a tractor pulled ride around the farm to see all the animals, and just walking around looking at things. I was so happy to see M., the midwife that helped me so much when I was pregnant with Lilly - and helped the doctor at the hospital deliver her. The nurse that was in the room when I delivered Lilly was there too. They were both happy to see us and especially thriving little Lilly.
Below are a couple pictures from the farm.
Lilly and I getting ready for the ride around the farm. (Lilly has decided she doesn't like riding in my wrap anymore and wants to ride in the Snuggli. She LOVES being back a little from my body so she can look all around more easily. Once she can hold her head up well we're going to the Ergo!) :
My son, wearing his dog costume, doing one of his favorite things in the world - pretending to drive a tractor! He LOVES engines and motors of all kinds and has an amazing understanding of them. :
My daughter had so much fun feeding a calf. She is dressed up like Lucy from the Narnia series. (Thank you C. family for the costume!) :
I'm sure many of you are familiar with this hymn that Luther wrote - "A Mighty Fortress Is Our God." It begins:
A mighty fortress is our God,
a bulwark never failing;
our helper he, amid the flood
of mortal ills prevailing.
Lilly's outfits in today's pictures are from my aunt and cousin who wanted to be sure she was dressed in traditional orange and black.
Sunday, October 30, 2011
This morning I got Lilly ready for church in her blue dress, which she's starting to grow out of! She got to wear her new mary jane shoes, knitted by my sister-in-law K. (2nd picture). After I had Lilly ready, I put her in her bouncey seat. Within minutes, Sneaky Lilly had kicked one shoe off and was working off the other, and wiggled out of her headband (last picture).
We're getting a lot of questions - in person and by e-mail - as to what our plan is for this week for Lilly's open heart surgery. We are going to leave for my aunt's house in Jacksonville, Florida on Tuesday. Wednesday morning Lilly will have pre-op at Wolfson Children's hospital. She'll have an EKG, echo, and blood work. They will let us know that afternoon what time she needs to be back at the hospital the next day for her surgery.
Surgery will be Thursday and will last about 5 hours. (What a way to celebrate her 16 month birthday!) Average recovery time, at the hospital, is 10 days. My husband will stay at the hospital with Lilly 24/7. I will be there during the days, and will go back to my aunt's house in the evenings to spend the night with our other two children. (Yay for homeschooling - it's easy to take everyone with us. And yes, the school books are going too!)
We will have a laptop with us at the hospital and there is supposed to be wireless there. So I will be updating the blog from the hospital. But if there's any problem, I will update from my aunt's house in the evenings.
Thank you so much to everyone for praying for Lilly! Please continue to pray that the surgery will go smoothly and that Lilly will recovery quickly. It is so exciting seeing what the Lord is doing with her life. One of my very favorite verses in the Bible is Jeremiah 29:11:
Friday, October 28, 2011
Thursday, October 27, 2011
Tuesday, October 25, 2011
Monday, October 24, 2011
Lilly seems to continue to gain weight and be thriving on her "real food" diet. Yesterday I introduced pureed egg (with a little breastmilk) through her g-tube. She's done great with it and had it again today. (We get organic free-range eggs delivered by a local chicken farmer.)
For the past few years, I've gotten more and more interested what had been dubbed "real food." (This just means eating food that is close to it's natural state as possible. i.e. no processed food, not lots of added sugars, pesticides, etc.) It's what I think of as "basic food": organic meat, fruits, veggies, whole grains, dairy (real butter!), etc.
I also hope that the medical profession in general will notice that there are children like Lilly that survive longer than statistics say they should, and will do what they can to help them. Our medicine is so advanced, I just don't see why any of them wouldn't want to try. We are so thankful that Wolfson Childrens Hospital in Jacksonville, Florida is willing to operate on Trisomy 18 children. But I also admit that at times I am completely annoyed that none of the big hospitals around us will operate on Lilly. (Though thankfully the majority of the doctors in those hospitals treat Lilly well and are kind.) Anyway, this reminds me of what one doctor at Wolfson's told us last year - that in the past, children with Down Syndrome were treated the same way.
Friday, October 21, 2011
Weight check = 12 lbs. 14.5 ozs.
The weather here officially feels like fall now. Lilly has had to get out her long sleeves and leggings. Long time blog readers know that we nicknamed Lilly "Sneaky Lilly" because she so often has one sock kicked off. (The "sneaky" part is she always manages to do it when we aren't looking. She's just sitting there all still and innocent then a moment later the sock is laying on the floor.) So I just got Lilly's first pair of Robeez off E-bay for her to wear around the house. (They are little leather slippers with soft bottoms and elastic around the ankles.) Maybe those will stay on!
When we go out, Lilly has a new pair of beautiful black knitted Mary Janes, courtesy of my sister-in-law, K. (A picture coming soon.) K. tweaked a pattern she found, to make it longer for Lilly's foot and the strap longer to fit Lilly's fat roll on the top of her foot. When I initially looked for shoes like that, I really couldn't find any in Lilly's size. Then it finally hit me that other kids her size are wearing walking shoes and had no need for shoes like this. :( But K. saved the day by knitting a special pair of shoes for Lilly.
Yesterday I called to get Lilly pre-registered with Wolfson Children's Hospital in Jacksonville, Florida to get things in order for her upcoming heart surgery. (Nov. 3.) I think they told me surgery is supposed to cost around $47,000 and last about 5 hours.
Lilly's crazy cowlicks all over her head make for some funny hairdos. The front part naturally sticks up into a mowhawk. In the back of her head are two "swirls" - you can see them in this last picture - they're the areas with a bit less hair. The hair growing in between is long and is actually growing straight UP her head. Its so unique and cute and funny. I figure that as her hair grows longer, the weight will pull it down eventually. When I first started peeking online into the Trisomy 18 world, I found one listing of "markers" that a mom had posted. The swirly cowlicks on the back of her son's head were on the list, given to her by medical professionals, of being because of Trisomy 18. But that was the only place I've ever seen that particular marker mentioned.
Hair is so unique to us all. I've got crazy thick dark hair. My husband and older daughter have lighter brown, thinner hair. My son has really blond hair that is thickening up. And Lilly's is of course brown and fine and is really growing in more fully. A scripture that often comes to my mind, which is wonderful and comforting is:
"Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows." - Matthew 10:29-30
Monday, October 17, 2011
- spinach/orange juice
- avocado/dark chocolate
- congee (see below for details)
Lilly is still eating coconut oil by mouth. Other than that though, I'm afraid I haven't been very good about working on mouth feeding with her right now. I've been so focused on the diet itself. But after her heart surgery we hope to really try hard to teach her to eat more by mouth.
Until I read the Homemade Blended Formula Handbook I had never heard of congee. It is a slow cooked porridge considered a staple in many Asian countries. It is supposed to be very easily digested. There are a lot of recipes out there for it, using different grains and spices. Here is how I made it for Lilly: combined 5 cups of water and 1 cup of organic brown rice in the crock pot. I added a pinch of himalayan salt. Then sprinkled in some ginger and cinnamon (both of which have many healthy benefits). Covered and cooked it on low for 8 hours. (Smelled yummy!) It made a lot so I put some in the freezer. With what was left, I blended it in the Vitamix with some breastmilk.
One important thing we've learned about feeding Lilly anything through the bolus - is NEVER lay her down flat for at least 5 minutes. If we do that, or even just jostle her too much, the food or milk comes right back out. In fact, Lilly's in my lap right now, staying propped because I fed her a little while ago. But I've kept her still long enough and she's getting squirmy. So we're off to do some physical therapy and practice sitting. :)
Saturday, October 15, 2011
Friday, October 14, 2011
When I was pregnant with Lilly I didn't have any support within the Trisomy 18 community. I didn't know it existed. I only found the negative stuff online and it was so upsetting I didn't look at it much. But once Lilly showed us that she was planning on staying awhile, I joined SOFT and ordered their handbook. Through that support group I got a call from the author of their care handbook, who lives in a town near me. I was shocked when she said her daughter (who had full Trisomy 18) lived to be almost 20! Then soon after we talked she got me in contact with another new mom, who's little girl, Giuliana, was exactly one month younger than Lilly. Giuliana's mother just started a blog for her. Check out this happy little girl at: http://www.g-giftoflife.blogspot.com/ .
I've been trying to do a lot of cleaning out in the house lately and in going through a stack of papers found a poem that my older daughter wrote about Lilly earlier this year. It is entitled "Lilly is Sweet":
There is a little girl named Lilly;
And she is very cute and funny!
We think she’s very cute!
She holds her toys and talks to us;
And to our family that’s enough!
She is a little blessing;
The best one we could ever be with.
Although she can’t do everything,
We think she’s a cute little thing!
So let’s thank God for sweet little Lilly;
She’s a blessing that’s cute and silly!
Tuesday, October 11, 2011
Yesterday was both Lilly's and her brother's first time to visit a zoo. It was a cloudy day - perfect for Lilly's sensitive eyes. I figured we'd have an interesting time as we walked towards the entrance and in front of us was a man - presumably with his family - wearing a skirt! And no not a kilt. It was an "industrial" skirt for "manly men." Ooookay ... I had heard about those in the past but had never actually seen one. Besides that oddity, we saw many animals and did so much walking. The most interesting thing I actually learned was that a rhino's horn is actually made of hair! Here are some pictures of Lilly around the zoo:
Riding a baby elephant (statute):
Taking a lunch break (bolus feed):
Lilly in front of the giraffes (she got a lot of laughs and smiles as people passed us and saw her sunglasses):
Lilly by lily pads:
Lilly riding the tram between "North America" and "Africa":
Saturday, October 8, 2011
"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen." - Ephesians 3:20-21
Below are a couple pictures from today. (A much bigger Lilly than last year - she's almost 13 lbs. now!)
Lilly sitting amongst the pumpkins, wearing her pumpkin hat:
Super Lilly trying to lift a pumpkin:
Lilly with the pumpkin she picked out:
Lilly sitting on one of the old John Deer tractors that were at the pumpkin patch:
Ready to go home - Lilly got a sticker saying she had visited the pumpkin patch:
In other news from the week, Lilly got her first Synagis shot (for RSV (virus) protection) this past Wednesday. She's supposed to get one a month throughout flu season.
Wednesday, October 5, 2011
Now it is very important that Lilly stay healthy. No more colds or any sickness, or the surgery will be postponed. Please pray for this!
We are so thankful to God for Him bringing all this about. We will have to travel out-of-state for this surgery. So we are grateful that there are surgeons in this country that are willing to help Trisomy 18 children. There aren't a whole lot! Praise God for Wolfson Hospital and their open-minded surgeons!
I'm so excited about Lilly's surgery! A bit nervous too. But whatever God's plan is for her - we trust Him. He's already surprised us so much with Lilly's life so far and we are exceedingly grateful.
"Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight." - Proverbs 3:5-6
Lilly got to do some more sightseeing today, right here in our own hometown. We took a homeschool field trip to the town's little museum, old jail, original post office, and old schoolhouse. Lilly managed to stay awake the whole time.
Here is Lilly in the little schoolhouse:
Tuesday, October 4, 2011
Yesterday we went on a walking tour of Bath, North Carolina with my mother-in-law. Bath is the oldest incorporated town in North Carolina, established in 1705. The weather was beautiful - sunny and cool. Lilly toured the town in my wrap and slept the first half of our tour. We saw several old houses.
We went the oldest standing church in North Carolina, St. Thomas Episcopal Church, which was built in 1734:
Bath is also famous for being a place where Blackbeard the pirate lived for a couple years. Here's Lilly snoozing by a sign about Blackbeard (Joseph Bonner House in the background):