Wednesday, May 11, 2011

The Elusive New Post

First off, sorry about no new posts in such a long time. Turns out having a infant with special needs at home on top of a hyperactive 3 year old consumes a lot of your time, especially when working 50 to 60 hours a week. For those of you still checking on the blog regularly or how want to keep up with it without having to check it every day, I'd highly recommend subscribing at this point. You can either do it through Google's follow blog feature (which to be honest is my prefered method because it lets me know how many people are reading still) or via RSS/Atom, which you can follow by clicking here (RSS) or here (Atom). I've also added handy subscribe by email buttons to the side under followers, and a widget for subscribing via RSS. Are you going "wha?" when I say RSS? You're in luck, because I've gone ahead and Googled something for you, which you can find here. Why should you subscribe? Well, I'd imagine with the event that's going to be happening soon that I will have even less time to update the blog. By subscribing, you get notified when I do update, rather than have to check constantly. *edit* in the process, I forgot to actually change the feed, so if you clicked on anything but the text links above, you got the old feed. This has been rectified, so you should be good to go now.

 Lillian's at home experience has been interesting. Kathryn and I always expected her to be quiet due to being in the hospital for such a long time. However, it looks like our expectations were for naught. Lillian is just as, and in many cases louder and more vocal than Annabelle was at a comparable age.
If you know Annabelle, you know this is no small feat on Lillian's part, and means that any hopes of having quiet time are now lost for what feels like eternity. But if Lillian is even a quarter as funny and quirky as Annabelle is, it will be well worth it.

Even though we couldn't go out for Easter, we still got the girls dressed up in their best dresses. Getting a picture of them both looking at the Camera is another proposition though. I've settled for at least one kid in the picture looking and smiling/not making a horrendous face.

Annabelle decided Lillian's exersaucer needed a couple stuffed animals
In terms of actual medical updates: Lillian continues to have massive issues feeding and is regressing at this point. Even before the transplant she would eat a little, but now she refuses to take any formula by mouth. We have to gravity bolus every ounce she takes which gets old since she's also refusing food of just about any type, and pukes what little she does accept. My gut feeling is this is related to Cyclosporine induced nausea, about which we have little we can do.

On other fronts, our most recent clinic appointment (last Wednesday) revealed a potential issue. While Kathryn's recollection of the issue is inconsistent to say the least, it appeared that Lillian's left ventricle was shrinking. You might remember that this is the ventricle that has caused us so many issues in the first place, so we are puzzled by that development. In terms of action, there's not much we can do now except to watch it, and it will be re-evaluated in a couple hours at her clinic appointment today. Further updates when I have them (hopefully not almost a month this time!)


  1. Glad to here I'm not the only one struggling with the picture thing. I cannot for the life of me get a decent picture of Elise and Hannah together. I gave up.. to much drama for a picture. : ) Good to hear that Lillian is asserting her personality.. You must have a very entertaining house between the two of them. Take care.


  2. Praying about the feeding issues...Those two are so adorable! I used to teach a whole bunch of little ones and picture time was always interesting..Sounds like you're never going to have a dull day with those two bubbly personalities united.