So far, Lily seems to be adjusting extremely well. The first few weeks at home felt a bit rough, but things have gone amazingly better once we found a good routine. Lily sleeps extremely well and doesn't wake up at night at all. She naps well. She's potty trained during the day. She doesn't eat or drink as well as we would like and is very resistant to trying new foods, but she is getting better about that. She seems to be bonding/attaching super well and likes to keep track of Dad and Mom at all times. She is also very caring and doesn't like to see anyone upset or hurt. She is super smart and figures things out very quickly, which can be both good and bad, depending on what she is getting into!! =)
Through all of her medical testing, we have so far learned that Lily might have a growth hormone deficiency, so are waiting to hear back from Riley Hospital Endocrinology about what they think we should do (watchful waiting, more workup, injections, etc.). She hasn't grown since she's been home and is still a "whopping" 23 pounds, but she is healthy. We were surprised and glad to find out she did not have malnutrition. She did test positive for giardia, but was treated for that successfully. An important piece of cardiac testing will be done on 10/26 by a pediatric cardiologist from Chicago. On that day, Lily will have an echocardiogram to get a good look at her heart structure. We are hoping that whatever problem she had with her heart (which was extremely vague on all of her paperwork thus far) is not an issue any longer. Either way, we will be glad to know for sure what is going on there. Yesterday was her first visit to Shriners Hospital in Chicago for the palate. The surgeon said she can be scheduled for surgery as soon as she has cardiac clearance and clearance from her other doctors, so hopefully we can find out in the next few weeks that she is fit for surgery.
At one point in time, we had read that Lily wasn't speaking. If that was the case earlier in the year, it definitely isn't the case now. She is soaking up English like a sponge and talks a LOT, though because of her open palate she is very hard to understand at times. She can't say most consonant sounds, so her words sound pretty mushy most of the time. She is able to say small sentences fairly easily, like "Mamma is tired"(wonder where she hears that one!) or "I see Sophie." More words than that and you just can't really understand her. She does love learning animal names and the sounds they make, so we hear a lot of "Cow, moo moo!" and stuff like that. She also loves seeing the farming equiment now that it is the harvest season, so we hear about tractors a lot from her. Her favorite song right now is "Tractor, Tractor," so I think that factors into it!
As part of her initial evaluation at Shriners, she saw the speech pathologist. She showed us this really neat trick to help Lily build up pressure to say some consonant sounds. If we pinch her nose, she can actually pronounce P's, B's, etc. We are very excited to learn how to do that. Lily, however, is less than thrilled about trying to practice it. She's a pretty stubborn little gal, so hopefully it won't become a power struggle! The plan is to get her into speech therapy locally before her palate repair, then take a break for a little bit while she heals after surgery before starting back up with her new and improved palate. We are eager to have Lily learn ways to pronounce words better...she has so much to say and we would love for everyone to understand her!
Here are a few pictures from the past month or so:
|All of the kiddos! From left to right, Christopher-Ryan (12), Alex (15), Lily (almost 3!), Lyriel (11), Keira (8), and Sophie (4).|