Wednesday brought me back to reality. Don't get me wrong, we didn't get any bad news; it just served as a reminder that just because Sophie has been healthy and is progressing developmentally, it doesn't mean we're in the clear. Sophie's developmental pediatrician (Dr. Ellis, who I love) wants Sophie to see an eye doctor; she noticed possible ptossis (drooping of the eye lids). There is a host of possible causes, so I'm trying not to think about it too much. Her appointment isn't until May, so it doesn't do any good to worry about it. Dr. Ellis and I also spent some time going through her measurements; she mentioned that Sophie is a bit short and that her head circumference is still small. Once again, not bad news, but something that we need to watch (she explained the worry about the head is we need to make sure her brain has enough room to grow). She mentioned that her shortness could be another symptom of whatever caused her birth defects. Since we missed Sophie's genetics appointment a few weeks ago (I was sick), I hadn't thought much of the phantom syndrome that the doctors insist exists.
Sophie's second appointment on Wednesday was with a pediatric hepatologist that is starting the first pediatric liver transplant program in Phoenix. He was brought to my attention by a hepatologist friend of mine. We had already been seeing a GI doctor, but hepatologists specialize in liver issues. We had already known that Sophie had a 50/50 chance of needing a liver transplant, and Dr. Miloh explained that since Sophie did not have a lot of scarring in her liver, her chances of not needing one are slightly better than 50%. He also explained that for most patients with her issue (biliary atresia), if they need a transplant, it is in the first few years after surgery. He put her back on Actigall, a medicine that is supposed to help the liver process bile. Sophie had been on it, but when I asked, her surgeon agreed we could take her off of it since her labs were coming back good. Dr. Miloh said that she should probably take the Actigall for the rest of her life. I was really hoping we'd get to a point where she wouldn't need medication.
Good news is that Sophie is progressing developmentally. She just started rolling over, which means that we have to keep a closer eye on her. Owen is sometimes pretty messy with his stuff (some of it with small pieces), and Sophie is putting anything she can get her hands on in her mouth (after Owen's birthday I caught her chewing on tissue paper). Combine that with the fact that Owen tends to be physical sometimes (hitting/kicking) and doesn't understand that Sophie can't eat regular food yet (I actually caught him trying to feed her playdoh), and it's amazing that second childs survive to toddlerhood. Sophie is eating solid foods (cereal and stage 1 foods), and loving it! This makes me very happy, since she isn't really doing better with the nipple. It's interesting to read forums online and to talk to our new neighbor who has a 3 year old boy with a g-tube (a new friend for Owen!); kids can have some real problems with eating, and it's something that a lot of people do not understand (including doctors). I'm hoping Sophie's excitement for spoon feeding bodes well for avoiding food issues as she gets older.
Owen is also getting some PT of sorts - the homemade kind. Keith noticed that Owen always went up and down the stairs using his right leg. We think this might be the reason he can't jump. His friend Finn was over, and was jumping from the second step up to the base of our family room with wild abandon. After seeing that, Owen went to the bottom step and "jumped" down, which was really just stepping down a little faster than normal. He really thinks he is jumping, but we can't get him to get off of both feet. So we have now added going up/down the stairs using his left leg to Owen's start chart. Sophie's PT also suggested having Owen kick using both legs, and trying to direct his kick to a goal. Owen will also be going to the eye doctor. His teacher noticed his eye drifting a bit; a potential lazy eye (his right).
Other than that we are still trying to get Owen to sleep better, but I've written enough for one night, so I'll leave that for another post.
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| From O So March 2011 |
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| From O So March 2011 |
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| From O So March 2011 |
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