Thursday, October 27, 2011

Lillian's Story - Preparing to Contact our Donor Family and an Update

First of all, I owe all the visitors of this blog (of which there are apparently quite a bit still) an apology for a lack of updates. Lillian has been progressing very well over the past two months, but there is still little to post about. I will at least try to keep pictures updated more frequently though, even if the distance between milestones for Lillian starts to spread out a bit more. I wanted to say thank you to those who still check in on Lillian on a daily basis despite the lack of news, it is extremely encouraging to see you still reading this, and that will hopefully be motivation for me to make more frequent (but shorter) posts.

Kathryn and I feel that an appropriate amount of time has passed at this point that we have begun preparations to contact Lillian's donor family. This is not a task that we take lightly, as we need to balance giving them time to mourn without going so long that they think we have forgotten about them. That of course couldn't be further from the truth; Kathryn and I think about and pray for our donor family on a daily basis, as Lillian is a living reminder of them. But we also understand why they might not want to talk to us immediately or at all, and we wish first of all to be respectful of them and their wishes.

We felt that the best way to start would be to make a video explaining Lillian's story and introducing her to them. The concepts for this video (and indeed our letter as well) have been in our heads for some time, so it is cathartic in many ways to finally commit them to a tangible medium. We hope that they will find some solace in seeing Lillian walking (yes, she has learned a new trick since the last time I posted!), smiling, laughing and playing with her sisters and cousins. While we can never truly put ourselves in their shoes, I honestly believe that if I was put in the same situation as them, that this is exactly what I would want to see. It is little more than a slideshow to be honest; Lillian has gotten quick enough that she's very difficult to photograph now, but it is a visual journey through Lillian's life to this point through our eyes; of her struggles and triumphs, her milestones both positive and life threatening. I hope most of all that it allows the viewer a window into our feelings - the blind fear when she was born; the quiet exhaustion of late nights listening to machines keeping her alive run; the near hopelessness that we felt when there seemed to be no light at the end of the tunnel. But I also hope that you see that we never gave up hope for Lillian, the excitement to come into the hospital every day and see her, whether it was lying and paralyzed or sitting up and giggling. In many ways the feelings were both positive and negative at the same time; such as the feeling of seeing the end of the tunnel on transplant day mixed with the deepest sorrow for our donor family. One final note - please watch this video with sound, the songs that play are the ones that I listened to before giving Lillian to the surgeons; unsure of if I would see her again. They are in many ways her songs.

Now that you've watched the video, I wanted to point out something that we stumbled upon during the creation of the video. While we were making the video and running the test runs, it was striking to see the dramatic difference in the technical quality of the photos both before and after transplant. This is entirely due to the generous gift of a DSLR from a family member, but I found it a fitting metaphor to see the dramatically improved lighting and subdued noise in these pictures that matches how we saw our outlook for Lillian brightened and we came out of the darkest parts of her life during the same time period. There are other subtexts as well, both accidental and intentional that I won't ruin at this time and will let you discover on your own.

Now, to Lillian today. As you read above and saw in the video, Lillian is now walking quite well. She didn't take to it as quickly as Annabelle did, but now that she has, she has been walking around our house with a look on her face that says "Oh yeah, I'm the boss now!" She's still a little unsteady and walks bowlegged, but she's quick and more comfortable every day. And she relishes the fact that Annabelle treats Lillian walking towards her as "Lillian's coming to get me", much to Lillian's enjoyment.

We've also made major strides on eating. While we're still trying to pack the pounds on her (in part by feeding her whole milk mixed with heavy whipping cream), she has gotten slightly less picky and we've discovered a love for beef and other meats that has been extremely useful in getting her to eat. Still struggling though to figure out how to get around her aversions to anything slimy or at a temperature slightly above lukewarm, but she is eating a better and more varied diet (for her at least, any nutritionist would shoot us for giving her straight whipping cream with strawberry flavor; but it's good for her specifically).

On the numbers front - Lillian's labs came back (today in fact) better than they ever have been. Her Cyclosporine levels are slightly on the low side but within range, and those can be attributed to her weight gain (she's around 21.3 now). But her BNP levels are lower than they've ever been (37), and her kidneys are in phenomenal shape due to the amount of liquid she's been drinking. All in all, we're very happy with the numbers, but we will probably change the Cyclosporine dose next visit, hopefully to twice a day if we can finally get her to cross 22 pounds.

In other small news, Lillian has discovered the wonder of a hot shower, we can't even take one now with her hearing it from across the house and doing everything she can to get in, clothes or not. She is getting more vocal on a daily basis (although she is still not talking; she is behind Annabelle, but that is not entirely surprising   considering) and we hope she'll start talking soon as her yelling has gotten... shrill. She is in just about every way a normal child who is a teensy bit behind in speech and has to take medicine 3 times a day. Kathryn and I are more than happy with making it this far.

Yes, I know they're not all using the same controllers, we ran out