Thursday, March 31, 2011

Break is Over

Until yesterday, it had been over a month and a half since Sophie had any doctor's appointments. Sophie now sees four therapists each week (PT, OT, Speech/Feeding, and a Developmental Specialist), but those are more like play time. Three out of the four are in-home, which makes it easy, and more importantly, they don't diagnose anything; for the most part, it's positive progression.

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.





From O So March 2011






From O So March 2011






From O So March 2011

Monday, March 21, 2011

Celebrations

My last post was written on Owen's birthday. A lot has happened since then. On that Saturday we had Owen's birthday party. I think Owen had a good time, although I could see why they say you should only invite as many friends as they are years old. It can be a bit overwhelming, and we probably made it more a party for us than for him. We went back and forth on whether to invite Owen's classmates, and decided to only invite a couple of his "girlfriends" that he hangs out with a lot at school (and the parents that we talked to the most). Only one was able to make it (the famous Abby), and Owen was really excited to see her. When I told Owen before the party that she was coming, he would say "No! She's at school!". He apparently he thought she lived at school, and did not exist elsewhere. We were going to wait until after the party to open gifts, but Owen decided he didn't want to wait - at some point during the party he just started opening them! In the past he always wanted us to help him with the unwrapping - he didn't quite know how to rip everything off, but he's over that now. Since then he gets excited when we bring in the mail - he loves opening envelopes.

On the 10th Keith and I celebrated our 10 year anniversary. 10 years!! Crazy! That morning I was reading to Owen when out of nowhere Keith sat beside us with his laptop and asked Owen if he wanted to watch a video. I thought it was rude for him to interrupt our learning moment with a video of all things, but then I saw what he was up to. Keith had created a slide show set to music (one of "our" songs) of pictures from the last 10 years. I immediately started welling up. It was beautiful, and I could tell Keith put a lot of work into it. If you didn't see it on Facebook, here it is:



That weekend we took the kids to Nana and Toolman's house (on Nana's birthday) so Keith and I could go out to dinner on our own. We went to Noca, even though they ended up not taking our Groupon on Sundays. I wasn't feeling well (I ended up being sick the next day), so I'll reserve my review for the next time we go, but it's worth mentioning that they served us cotton candy before our dessert. Cotton candy at a fancy restaurant! That is just weird to me, but maybe I just don't get out to contemporary restaurants enough.

This past weekend we took our first family trip to celebrate Gretchen and Jeff's wedding (some Ultimate Frisbee friends). It was held at Agua Linda Farm, in Amado, about 45 minutes South of Tucson. The timing worked well because we were also able to see my brother and his family who live in San Diego. It was nice to catch up with some friends and to get the kids out and about. Sophie, once again travelled well, despite all the "stuff" we needed to bring to feed her. Owen got a big kick out of the "photo booth" they had set up with fun costumes to take silly pictures. Owen is normally too shy to wonder far from us, but he surprised us by leaving our dinner table (about 25 yards away) several times to go get a different part of a costume. Since he liked it so much we are now working on creating a costume box for playing with at home. The ceremony and location was very unique and pretty, (not to mention the beautiful bride!), so Keith and I had fun taking pictures.

Today (or yesterday for most of you reading this) is Sophie's 8 month birthday. Sophie is doing really well; has stayed healthy, and is progressing on her physical therapy. She starts occupational therapy tomorrow. She is oh-so-close to turning over from her back to her tummy (she can already do tummy to back). She isn't really nippling any better, but enjoys eating from the spoon, which is good news.

All this celebrating apparently wore Owen out. We've given up trying to get Owen down for a nap on the weekends (I'll post more on his sleeping habits at a later time), so he finally went down for his nap at 4pm yesterday...and then didn't get up until 5am this morning (and snuggled with Keith until 6:30am). And still took a long nap today at school. There's a lot more that I'd like to blog about, but I'll keep that for another day, as sleep sounds good to me right now!

From Owen's 3rd Birthday Party

Thursday, March 3, 2011

Turn off the tears, Mommy!

Owen Bentley Aspinall was born three years ago at 6:56pm. As is our custom, we celebrated today at 6:56pm. (Not sure we'll continue that custom with Sophie who was born at 5:15am, although I could see Keith waking me up to do that.) We celebrated with a family hug, which on an ordinary day sometimes makes me tear up, let alone while thinking about the day that changed my life forever. So yeah, I started visibly crying. I tried explaining to Owen that it was a good cry, but he kept saying "Turn off the tears, Mommy!" So I did. Until Keith showed me a Zits comic strip that we have on our refrigerator about reminiscing of when their son was young. (Keith takes pride in getting me to cry.) Again, "Turn off the tears, Mommy!"

This is really a birthday week for Owen. Tuesday my parents came over to install their birthday present to Owen: a new sandbox. My Dad built it, and I think it turned out really great:
From O So March 2011

From O So March 2011

This morning we had pancakes, Owen's favorite breakfast. Tonight for dinner we had pizza. They celebrated today at school with a special snack (provided by us) of corn muffins and sang to Owen while he was wearing his special birthday hat:
From O So March 2011

When I asked Owen what he wanted for his birthday dinner, the conversation went like this:
Me: "What do you want for your birthday dinner? Pizza? Pasta? Something else?"
Owen: "Something else."
Me, thinking: Really? No to pizza and pasta???
Me: "Chicken? Beef?"
Owen: "Beef." [pause] "No, chicken. Chicken Parmigiana." (with a head nod to show he made up his mind)
Which is funny, because Nana was telling me earlier that day that they had bought chicken to make chicken parmigiana. So that's what he is getting tomorrow night at Nana and Toolman's house.

And then on Saturday we are having a craft party at our house. Should be fun!

Right now Owen and Daddy are doing a floor puzzle that Owen got from his aunt, uncle and cousin in California (thanks Katie, Ken & Ben!). That leaves me time to write this blog and to read Owen's birth story and pictures once again. Which, of course, is turning the tears back on. :-)
From Owen