Today's pictures are of Lilly wearing her new smocked dress. It's the "Petit Ami" brand which I seem to always be drawn to. (I like the "old fashioned" style.) Ebay usually has a nice selection of these dresses, so I wasn't too disappointed when I needed to move Lilly up in sizes. :)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.
When I was pregnant with Lilly and found out that somethings weren't right with her, I really really tried to just eat organically and did things like adding in homemade kefir. I wanted to do everything I could to help give her a better chance of life. And since Lilly's immune system is always in a fragile state, I continue to try to learn new ways to feed my family better so we can be healthier. I recently came across a wonderful e-book called Real {Fast} Food by Trina Holden. This book is perfect for me! It is filled with time saving techniques and the basic kind of recipes that my family loves. (The first one we tried was salisbury steaks and we've all been craving to have it again ever since!) Most of our menu for this week will have more recipes from this e-book. I don't think I've ever really gotten excited about a cookbook before (I honestly don't even like cooking meals. I prefer to bake bread or something like that.) Anyway, it was the best $6.00 I've ever spent on something food related. If you're interested in learning more about the e-book, or purchasing it to download, go to: http://www.trinaholden.com/p/real-fast-food.html Scroll down and you'll see that you can download it in pdf, Kindle, or Nook.
Praise God, Lilly is staying well right now. She's so happy too! My husband and I were discussing last night that we don't even remember the last time she cried. We're excited that if Lilly continues to thrive, then next week we will get to leave to drive out-of-state for her open heart surgery where they'll patch the hole in her heart. God's plan for this little girl has completely surpassed everything we had hoped for. My current goal for Lilly is that she'll be one of the 60% of Trisomy 18 children (of the 5-10% that made it past age one) to make it to 5 years old. :)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.
Trisomy 18 is still considered "incompatible with life," but Lilly is one joyful little girl who I'm sure feels very "compatible with life." This scripture is so fitting for her:
"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." - Psalm 139:13-14
Such cute photos! And to think that I was the one who made her grin! :-D
ReplyDeleteThe statistics for trisomy 13 and 18 are very likely grimmer than they could be because the infants are seldom treated as doctors expect that they will die. So, as a result they die without treatment and contribute to statistics that future doctors will use to say, "see, they all die." This is referred to the the self-fulfilling prophecy.
ReplyDeleteIf you review some of the larger studies that render the 5-10% survival rate so often quoted, they do not include information related to the child's code status or what treatment was provided or withheld. There is no doubt that some of the children born with these conditions are best treated with comfort care but there is a wide spectrum. Every child is unique.
I am so glad that your Lily has done so well. I am sure that the doctors in your state are learning from her and you. Lily is their teacher.
Love the dress! I totally agree with eating whole foods - been working on doing that over the past few years too!
ReplyDeleteGreat post. Did you know that today happens to be "Food Day"? It's a national (maybe world-wide, I'm not sure) movement to support and raise awareness about the very things you blogged about: the relative non-existence of 'real food' in the American diet. Anyway, there were several local events associated with it, but unfortunately our day was too busy to check any of them out :(
ReplyDeleteWill be praying for the trip to Florida!
I'm sure your commitment to feeding Lily real food is going to help her blast those statistics right out of the water! She is one healthy looking little girl - look at those chubby wrists! Hooray! Good job, mommy!
ReplyDeleteLilly is just "blossoming" with her solid foods! I can see change almost every time you post new pics! She is just a.beautiful baby with such a sweet spirit, and you are truly blessed that God entrusted her keeping and raising to you, and she is blessed to have been placed in your family! :)
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