Monday, July 4, 2011

More Good News - Major Steps Forward!

It's been a while since I've had time to post, but we haven't been sitting around in that time! Lillian has made some big steps forward in the last couple weeks. The first that I will mention is eating, as you can see above. Lillian seems to have finally gotten over her aversion to oral food, and has been not only accepting solid food, but demanding it. She started with yogurt melts last week, and has progressed to the point where yesterday alone she added 7 new items to her diet (including mandarin oranges), and seems to be limited only by the  lack of variety at the store and the limitation of having no teeth. She also loves graham crackers, flavored puffs, and wheels. Berries and small fruit that we can put in a baby safe sucker are also a hit.

Normally solid food alone would be enough to warrant a post, but Lillian has made more progress than that. She has also gone from begrudgingly taking small amounts of liquid via syringe to taking full on sips from a sippy cup. It's messy, and usually ends up with a 5 foot circle of milk surrounding her, but it's progress none the less. Formula is still a no, and we've all but given up on that, but we hope that if she will take whole milk and eat solids, we will get the OK to remove the feeding tube (nurses reading this - try and plant this idea subliminally in Dr. Law's head). Dr approval is the only thing we would need at this point, on the trajectory she's currently on, we could have her taking everything (meds included) orally and finally remove the feeding tube. With that gone, it would be next to impossible to tell that she isn't a normal baby/toddler, as her mannerisms and behavior otherwise are rapidly catching up to where a healthy baby would be.

But we're not done yet - Lillian has made even more progress lately. Last Saturday (yes, two days ago), Lillian finally figured out how to get over her leg and has started slowly crawling around. The mobility is limited at this point as she is slow and needs major motivation (i.e., food) to get to the point where she will even attempt it, but as she figures it out, we expect that she will soon be powering around the house with her new-found mobility. Lillian has also made major progress with standing. She is only at the point of holding onto a fixed object, but every day, she is more stable and able to stand longer before falling.

With a little more time, she'll develop the eating/drinking/crawling and will be at a normal level of development. It feels so alien to say such a thing, but hoping things go well, it seems like it is finally on the horizon. We consider ourselves lucky to say that, as many families never get to this point. It isn't easy having 3 little girls, especially since they all have personalities like Annabelle (strong and belligerent), but it is a blessing to see their bright eyes and smiles every day. For those wondering about Ailah, she seems to finally be getting over the cold Annabelle gave her weeks ago, which will hopefully help her (and us) sleep a bit better. She is already drinking more than Lillian is (8 ounces every 2 hours compared to Lillian's 5 ounces every 4 hours, plus various snacks). All 3 are developing very quickly and are already getting hard to keep up with.


  1. I know that you do not know me. I can't even remember how I found your blog but I have been following Lillian's journey. I am so excited to read of all her progress. We lost our little Hadley after heart surgery and ECMO. I am thrilled that you are all home together enjoying being a family. Thoughts and prayers to you even though we have never met.

  2. It's so great to hear all of the great news you guys have! Those are such big milestones. It's so good to hear that she is finally liking food. Take care and know I'm praying for you as you have a house of three young girls. I cannot imagine.. my two right now are plenty. Glad to know it's not just my household that is filled with strong willed girls. : )

  3. HAPPY BIRTHDAY DEAR is your 1st birthday; what a miracle child you are! God bless you with a long and happy life; much love from
    Grandma Carol