I haven't said much about Lilly lately, so I wanted to post an update. Lilly recently went to see her pediatrician for her 15 month check-up and except for her weight, is doing very well. So much has changed since she turned a year old. She is not only walking, but running around and climbing on everything. She has no ounce of fear and barrels through anything to get what she wants (and that is generally whatever her sister has in her hands at the moment). She follows Olivia everywhere and wants to do whatever Olivia is doing - she clearly idolizes her big sister, even if she "frustrates" Olivia sometimes (Liv's words, not mine).
Lilly LOVES, LOVES, LOVES to read - she will literally spend an hour just bringing you books so she can sit in your lap and listen to you read. Her attention span is short, but she loves it when you point out different items and identify them for her. I really feel like she is sponge right now, soaking up all the information. She surprises me with what she understands - she can follow simple commands and recognizes so many objects by name. She loves shoes (and particularly Olivia's Beauty and Beast flip flops) and cracks me up when she points at the "shoo" and "ocks." Her vocabulary is more limited than her understanding, but she knows and says "mama," "dada," "sis," and sometimes her garbling sounds like she is trying to say Maggie, Jake, or Ashley (admittedly, those are much harder names). Lilly loves her "nanas" (i.e. bananas) and can say "nana" and "papaw" (although "grammie" and "grandpa" are a little too hard still). It seems as though she picks up a new word every day, but you have to listen closely to catch it.
Dr. Taylor said that she is progressing just as a 15 month old should be - except for her weight. We are stuck at 18 pounds and can't seem to put on any weight since she dropped her bottles. I think she weighed about 18 pounds at her one year checkup and she weighed in at her 15 month checkup at 18 pounds 8 ounces. Dr. Taylor is concerned and so are we. Lilly eats like a horse (or at least, I think she eats well), but she can't seem to pack on any pounds. She primarily drinks Pediasure to add extra calories and I add butter and salt to all her food. She doesn't like many fruits and vegetables, but she is an outstanding "meatatarian" and loves to eat anything with chicken, pork or beef mixed with pasta or cheese. While I like the fact that she eats a lot of protein, which she needs, it has caused problems with constipation since I have a hard time getting her to eat fiber.
We saw Dr. Kanga last week for Lilly's quarterly CF appointment and he is concerned with her lack of weight gain as well. While Lilly was doing well, growing along the "curve" that the doctor's follow, she has dropped from about the 10th percentile in weight back down to the 3rd percentile - not good (she continues to grow in length and measures about 29 inches long - not huge, but respectable). Dr. Kanga believes some of the problem may be related to constipation because a chest x-ray (which I will describe later) showed a belly full of basically poop and gas. That doesn't make a little girl very hungry I would guess. So we are now on a daily regime of Miralax (because honestly, why not add another medication or supplement? - we don't have enough already!). Hopefully that will "cleanse the system" and Lilly will eat a little more and put on some pounds. I have no idea what the next step may be if she does not, as Dr. Kanga only said we would "change our strategy," but we are going back to see him a little early this time, in 6 weeks, to check on her progress.
Now for some good news. Lilly had her annual chest x-ray and it looks good! The markings that concerned us last summer are no longer present, so Dr. Kanga feels as though it was an infection that cleared up with the antibiotics. We were very pleased with that report and breathed a huge sigh of relief.
More good news - Lilly is getting a Smart Vest! I know, you are wondering, what the heck is a Smart Vest? A Smart Vest is a wonderful invention that is best described as a vest attached to a machine that essentially does the chest percussion therapy for us. It is an incredible invention not only because it is more efficient and consistent in her therapy than we are when we do it manually, but it will provide her with some independence, something that isn't much at issue now but will be later. I can only imagine how difficult it must have been for CF patients in prior years, always depending on someone else to perform the therapy on them (it would be very difficult to accurately do CPT on yourself). With the vest, Lilly will be able to do the CPT anywhere without the aid of another person! We are really excited about this. I expect that it will terrify her at first, but once she becomes accustomed to it, it will be a great thing. If you want to check out what the Smart Vest looks like, you can go to
www.smartvest.com. I will try to post a picture once we receive it - it should be here tomorrow and then we will be trained on how to use it. Wish us luck!
My "Tiny Hiny" - hard to believe they make a vest tiny enough to fit this little girl!
All smiles for the camera!
Lilly loves to pet on Maggie - Maggie usually she stands there with a panicked expression on her face.
