Lillian's Heart Journey: A Wild Post Appears

August 31st

I feel that it is high time for a new post on this blog. I have neglected it for some time for various reasons (buying a house, Lillian doing totally fine), but seeing as it has been almost half a year since I last posted, I figured it was high time for a status update and another picture dump.

April 3rd

Health wise, Lillian has been doing pretty good overall since my last update. We've had a couple flus and colds; as well as huge fluctuations with lab levels, but this is fairly standard stuff post transplant. One item of concern is recent labs indicating decreasing kidney function, but that is likely due to Lillian not drinking enough. Even a never ending supply of chocolate milk doesn't appear to be enough, so we might have to resort to less desirable options like soda. At this point though, both the calories and fluids of that would be appreciated, as she is still chronically underweight.


April 6th - the concept of an Easter egg hunt is overwhelming

Developmentally, we've still a little behind. Lillian's way behind Annabelle in speech (at this age Annabelle was holding fully coherent conversations with us), only just now getting to the point of making attempts at words. Her attempts are still crude, but fully understandable to us. Her vocabulary has recently hugely improved though, so we're hopeful that it's a good sign of things to come. She also got her first sentence out last week - "Ailah, no!", indicating great things to come.

April 7th

Even though her speech mechanics are still quite rudimentary, her custom vocabulary is quite entertaining. For example, while Lillian still does not say "yes", she has a very enthusiastic "I dooo! I dooo! I dooo!" that takes it's place, and hearing it shouted loudly is always entertaining. Dada is still a word for just about everything though. I would estimate her vocabulary to be ~50 words at this point.

April 7th

In other areas, she appears to be catching up. She is a social player at this point, but needs to learn how to share more. She loves playing singing games like "Row Row Row Your Boat" and "Patta-Cake", and has a secret handshake with me that she loves to do at every point she can. She is an enthusiastic reader, although she rarely has the patience to sit through a book that she brings you. With her sisters, it is non stop running and giggling and general revelry. Even when they are playing nice though, there's usually a look in her eyes that indicates she's trying to do something naughty to get a reaction out of them and us.

April 9th

Her personality is really coming into bloom at this point. By looks she's a fairly faint red-head, but has the full attitude of one. Overall she's happy and friendly, but she has an ornery streak a mile wide, and is just as much of a troll as her sisters are. If we so much as dare to cross her, she not only pouts but tries to retaliate with sneaky slapping and general mischievousness (in once such instance, grandma pissed her off for who knows what, and two hours later during lunch, Lillian looked grandma in the eye as she slowly pushed her full plate off the table). She will be a handful for sure when she's older, but we will gladly take her strong, fighting personality, and attribute her success in part to it.

Good progress so far, more than we had ever expected. Here's hoping the rest of the year continues to treat her well.If any Children's staff are still reading, know that we still love you guys, and in some ways missing seeing you all.