Article about 21 year old woman with Trisomy 18

Here is an encouraging article about a woman named Brady who has Trisomy 18 and is now 21 years old! She lives in Kansas with her family. To read article click:

http://smeharbinger.net/featured/sophomore-cares-for-sister-surviving-with-trisomy-18

What's next for Lilly?

It seems like for most of Lilly's life, our focus for her was to get her big enough and stable enough for the heart surgery she so badly needed. That was finally done earlier this month and she is recovering nicely.

When we walked out of the hospital with Lilly 9 days after surgery, it was such a relief! I'm a goal oriented person though, so I did find myself thinking "what do we work towards next?"

I wasn't the only one thinking that. We've had a number of people ask us what was next for Lilly. More surgeries? Therapies? What?


One misconception that I need to clear up first is that even though Lilly's heart has been repaired, it doesn't make her Trisomy 18 go away. She will always have that. It is an extra 18th chromosome in EVERY cell in her body. This means she will NEVER have a normal life expectancy. She's one of only 5-10% that has lived past 12 months.

We will always have to be careful with Lilly because she can get sick so easily. She will always have huge mental and physical challenges. She will probably never walk on her own. She may never be able to say a few "real" words. She may never feed herself and may always need the g-tube. We will always need to take care of her most basic needs.

So in the eyes of many in the world - what good was the heart surgery? It was wonderful! It gave Lilly a heart that now functions normally. She now can breath easily and that gives her more energy and she shouldn't burn calories so crazy fast. She no longer needs oxygen at night. Lord willing if/when she gets another virus, her poor heart won't start to quickly fail.

So what is next for Lilly? Well we don't honestly know. We don't currently have any surgeries planned for her. As far as we know things inside her are working pretty good right now. We'll keep up with doctors checkups.

So the big plan is just to continue to love her. To help her live each of her days to the fullest. To go as far as we can with her therapies, which she loves so much. To hold her, hug her, and give her lots of kisses. To let her touch the lives of others and share with them God's grace in her life.

Lilly is consistently the most joyful person in our household. Her smile makes our day. She is our treasure. Our gift from God. There isn't anything that any of us wouldn't do for her. And however short - or long - her life is with us, we will continue to love every minute.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Philippians 4:6-7

Video: Blowing raspberries

Here's a video of Lilly from last night. She was having a great time blowing raspberries!

Happy Thanksgiving!

Happy Thanksgiving!

Our family marveled that we had Lilly with us for her second Thanksgiving! Thank you God!

Lilly celebrated by sleeping in until noon today. We had to wake her up - sleepyhead! Then she got to hang out with her cousins for the afternoon. My mom and I tried to take pictures of all 7 cousins lined up on a couch, but it wasn't easy as 6 are under the age of 5. Lilly was the calmest.


Last night we left Lilly off the oxygen and hooked her to the pulse ox. She only set the alarm off once and it was just for a few seconds! Yippee! I'll monitor again tonight. I'm now actually wondering if our pulse ox is off. I hooked up both my son and I to it this evening and it told us we were only at a "95." Lilly was doing even better than that part of the night. I'm wondering if the numbers are a bit off and that Lilly is at and near 100 most of the time, like at the hospital. Hmmm ... maybe Lilly was on oxygen here when she didn't need to be. She sounded so good today I didn't even give her the Lasix. Lilly is thrilled with the idea that in general she won't need that cannula in her nose at night anymore! Now that is something to be thankful for!


The kids drew their annual turkey hand (last picture). Lilly's looked a lot bigger than last year's and I was able to trace all her fingers better this year, since her fingers aren't clenched like they used to be. (To see last year's drawing - and a tiny Lilly - click here.)

"I will praise God’s name in song and glorify him with thanksgiving." - Psalm 69:30

Cardiologist appointment update

Height = 24.5 inches

Weight = 12 lbs. 15 oz.

Today our whole family proudly took Lilly to her first post-surgery cardiologist appointment. Dr. R, her cardiologist, ordered an echo done and was extremely pleased with the results.

Lilly's heart is functioning normally! How very very exciting to hear. :)

Her left and right ventricles are still thick, which happened in response to the holes she had in her heart. Perhaps now that the holes have been patched, and the pulmonary artery band removed, they will eventually become more normal. There is still a narrowing where the pulmonary artery band was. That should self-correct. But if not, then eventually Lilly will need a heart cath where they will insert a balloon and inflate it in that area.

Dr. R said to keep a check on Lilly with the pulse ox as he thinks she should be off the nighttime oxygen now. And once she has been off it for about a week, then we can stop giving her Lasix.

We knew things looked good when Dr. R said Lilly didn't need to come back for 4 months!

"A happy heart makes the face cheerful . . . ." - Proverbs 15:13a

Lilly plays the I'm-going-to-get-your-sugar game

In the days right before we drove to Florida for Lilly's heart surgery, Lilly began playing a game with us.

The first time it happened, my husband was holding Lilly and kissing her neck. Lilly often smiles when we "get her sugar" (kiss her neck). He would tell her he was going to "get her sugar" then kiss her neck a couple times, then lean back and look at her face. She would smile back. After a couple times, she suddenly began to turn her face to expose her neck after each time he kissed her. We marveled but weren't sure if it was really on purpose or just a coincidence.

Then the next night, I was playing with Lilly before bed and she began to do this with me. How exciting! She really was doing it on purpose! (For those that don't understand why this is so thrilling to us - it is because Lilly is very mentally and physically delayed. We have no idea what to expect from her, so when she does new things it is just so exciting.)

I was very happy when Lilly again began turning her neck yesterday, in anticipation of me getting her sugar. We're still waiting for her to remember how to laugh, since we've been home. But she remembered her sugar game!

"There is surely a future hope for you, and your hope will not be cut off." - Proverbs 23:18

Sweet talkin'

Lilly's got a "new 'do" - big sister has started pulling Lilly's hair to the side and clipping a bow around it. She calls it the "cocked to the side firework." Ha!

Lilly is finally starting to talk again some. Several times today she has talked very sweetly and softly. My son commented "she's not loud Lilly anymore." The mom of Emily, a 5 year old girl with Trisomy 18, told me that her daughter, like Lilly, seems to "forget" how to do some things whenever she is hospitalized. Things that seem to take a few weeks for them to start doing again.

We were hoping - and still hoping and praying! - that Lilly will be off the oxygen at night for good once she had her heart repaired. However, the pulse ox has shown us that if that time is coming - it is not yet. While awake Lilly's numbers are now in the upper 90s and 100. (Before they averaged the mid 90s.) However she's dropping into the upper 80s and low 90s while sleeping. Of course some of that is probably still healing up and being sore and not breathing as deep when she sleeps. So she'll have to stay on her half liter of oxygen at night for now. We'll test her again with the pulse ox in a couple weeks and see how she does.

Lilly started back with physical therapy today. Very very gentle exercises. She seemed to enjoy it but was tired by the end. Lilly's therapist used to work with recovering cardiac patients (children) so she knew what to do.

I made my first herbal infusion today with an herb called mullein. Mullein sounds perfect for Lilly - it is high in iron, magnesium, potassium, and sulfur. It's the choice herb for respiratory problems and pulmonary diseases. It calms coughing, loosens mucus and expels it. Lilly is still having coughing and choking on mucus on and off and I am excited to see if this concotion will help her. Plus she needs extra iron and potassium. (I buy herbs online from The Bulk Herb Store: http://www.bulkherbstore.com/ .) They also have a weekly email that I have learned a lot from.)

Yesterday we had a "Lilly blessing" from the middle school spirit squad at the Christian school my husband works at. A sweet card and a yummy meal. Thank you! :)

"It is more blessed to give than to receive." - Acts 20:35b