Saturday, July 23, 2011

The Biggest Milestone Yet - Lillian's First Birthday

We've hit what I think is one of our biggest milestones yet - Lillian's first birthday. Getting a heart is the only other major contender, but this day in particular is specially because we were never sure today was going to happen. It was almost surreal seeing Lillian in that seat today, especially since I remember pictures of Annabelle that look exactly like the picture above (note that I'm having problems finding them right now, otherwise I would have posted them; I blame my shoddy picture organizing). It's a huge mental milestone for us to have hit today.

I realize as I write this that I have forgotten to post about another important milestone. I'll give you a chance to figure out what it is first: go look at the pictures of Lillian in the last post, and then look at this one. I'll post one more to help:

If you're still guessing, we've removed her feeding tube entirely. I must admit this isn't entirely with the blessing of Seattle Children's, but we reached a point about 3 or 4 days ago where Lillian simply refused to leave the tube in any more, and we had to choose between antagonizing her by placing it constantly, or just accepting the ineveitable and moving on. So the tube is gone. Lillian is eating and drinking entirely by mouth at this point, although we have to bribe her to drink with apple juice and chocolate milk. And yes, we know she is far too young for this, but when you have medical conditions as serious as Lillian, it's ok to pack on a few extra pounds at this point in her life.

It is both encouraging and difficult to write this post. On the one hand, the last remaining reminder of Lillian's condition that others see are the scars, and those will fade over time. I cannot tell you what a blessing that is, and how unreal it is at this point to be able to walk into the store and not having people walk up asking what is wrong with Lillian because they can no longer tell that anything is wrong. Now we just get looks because we're in the low 20's and we're carting 3 kids around. I can't remember the last time I was able to do that. On the other hand, as I write this, I can't help but think about a Seattle family who lost their 9 year old today due to a 15 car accident earlier in the week, another transplant family in Tennessee who are at the hospital with complications that they don't yet have a cause for, and our own transplant family, who are spending today without their child while we spend today celebrating ours. Yet another family still waits for a donor after spending over a year on the list. I would ask that you keep all 4 families I mentioned in your prayers, as they either still have reason to worry or are in one of the darkest periods in their lives. Even as we finally have a day to celebrate, we have not forgotten you, or the families that we have lost touch with, yet we know are going through similar situations. Today has been a humbling experience.

Lillian with Aunt Kim

I swear Annabelle is smiling in this picture.

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.