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

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

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

A First Time for Everything

I have a bit of catching up to do on this blog. A lot has happened in the last week or so.

Last Wednesday was Owen's first trip to the dentist. You might recall that Sophie actually went to the dentist a month ago. I was afraid her teeth were coming in wrong, so our pediatrician recomended we take her to Pediatric Dental Specialists. (It turns out what I thought were teeth were "Enamel Pearls".) I liked it so much there that we went ahead and made an appointment for Owen. The pediatrician had noted how brown Owen's front teeth were, so I was a little afraid that the appointment would be problematic. We tried to prepare Owen by getting some dentist books and hyping it up. It also helped that his school was also talking about dental hygiene and the dentist. (We had a friend who said he had his kids sit back in a chair and they shined a light into their mouths to practice, but alas, we found that out too late.) But I was worried that maybe we were sending him too early. He doesn't like us brushing his teeth and isn't very good at opening his mouth for us. Turns out he did just fine. You could tell he was scared, but with some encouragement he let the hygienist clean his teeth. There were no tears shed. She did have to spend some time on his front teeth, which she said is likely from iron supplements (which Owen did have to take when he was younger). He really enjoyed the train motif of the office (there was even a train going around the ceiling), and of course the surprise toy at the end. If you ask him now if he enjoyed going to the dentist he'll give you a smile and say "yes!".

And then on Thursday, more dental news: Sophie got her first tooth! For real this time! Which seemed to explain why she was getting up in the middle of the night. Overall I think she handled the pain fairly well.

Friday was another first for Sophie: her first trip out of town. Unfortunately the reason for the trip was not happy (my brother's wife's father passed away), but it was good to give Sophie (and Owen) some new experiences. Owen was able to play with his cousin Ben, who turns two this summer. I was able to see my brother and spend time with my parents. It was also enjoyable to see my sister-in-law's family, albeit under bad circumstances. Keith had to work so he did not join us, which meant that the car trips were just me and the kids. I timed it so that they were both napping, which worked well. It's gotten easier to do long car rides with Owen, even if he's awake. He is at the point where we can carry on a conversation (or play some verbal games) to pass the time. I wasn't sure how Sophie would handle all the excitement, but she did great. She wasn't happy if strangers held her, but I imagine that's normal to a certain extent. (I do worry that she is too attached to me since we are together so much. There were several people who commented on how lovingly she looked at me.) It was a bit stressful having to pack everything for the two of them, but aside from the annoyance of changing so many diapers, the trip wasn't difficult. Feeding for Sophie went pretty well.

Which brings me to Sophie's next first: taking over 5 oz from the bottle!! A whole feeding!! Lately she has been taking 2-3 oz. She has never taken more than 4 oz before this weekend. After we returned from Tucson on Saturday, we went to one of Owen's friend's birthday party, which is where she took the full bottle. Before this weekend I would have thought that eating in unfamiliar surroundings would be hard for Sophie, but she proved me wrong. This is a huge step for Sophie. I realize we still have a ways to go, but this brings me hope that Sophie will be a normal eater some day. [Update: She took another 5 oz on Monday at home!]

About a week ago I had bought some "Cars" underwear for Owen. I figured that Sunday would be a good day to try a no diaper day (his first) since we were planning on being home all day. Owen does well with going to the bathroom on the potty, but we always have to ask him to get on the potty(and sometimes he doesn't want to). I don't think he's ever said "I need to go potty" on his own. I take that back; he says it at night when we are trying to put him to bed as a stalling tactic. He only had one accident today, which didn't turn him off to wearing underwear, so I think we're making progress. He still hasn't asked to go potty, but hopefully that will come with time.

So a very busy few days!!

From O So February 2011

Owen getting ready to get his teeth cleaned.

From O So February 2011

Showing off his pearly whites!

From O So February 2011

Underwear!!

From O So February 2011

You can't see the tooth, but it's in there.


A few words about Rick Eck, who passed away from mesothelioma. Rick's smile was infectious and his hospitality generous. Rick and Sue have always welcomed us like family. Rick's obituary says that he was an advocate for people with special needs. I wouldn't be suprised if he had something to do with Sophie taking a full bottle. Last time I saw Rick he took me sailing on his boat in San Diego. I had mentioned that it had been two years since I had sailed (due to Owen being born). He told me not to let that happen again and that anytime I'd like to go sailing he would take me. Rick, it will hopefully be a while until I can take you up on that offer, but I'm holding you to it!

From San Diego August 2009

Rick with his wife, Sue, and grandson, Ben.

One Smart Cookie

Owen is not yet potty trained. He can be resistant to doing any kind of art project on his own, particularly drawing/painting, wanting us to do it instead. He has no interest really in drinking from a regular cup. He doesn't like big swings at all and has been reluctant about going down slides since last summer. He doesn't like brushing his teeth, having his hair combed, or his face washed. He will not sit in the bathtub, but doesn't like showers.

But one thing Owen can do is read.

I posted on FB two weeks ago about this new skill (January 24). That was the night that it finally clicked that putting sounds together equals words (the definition of reading that I'm going with. others might have a stricter definition). Joanne had taken Sophie with her food shopping as I was getting Owen ready for bed. As part of our routine, I read him three books. On that particular night, I started with Hop on Pop. I started on page 1, and we sounded out the letters.

"uh... puh... UP," Owen said.

I was a little surprised, but just figured he knew how it started. So we did the next word.

"puh... uh... puh... PUP," he said.

I congratulated him, giving him a high five, but still thought he just memorized the words on that page, so I skipped 10 pages ahead. In the next 20 minutes, with some prodding from me on what to do (what letters do you see? what sounds do they make?), he proceeded to read ball, wall, jim, bed, pat, sat, hat, bat, long, stop, snack (almost), and fast (which wasn't). And he was definitely reading--sounding out all the words and putting them together and saying the word proudly. "Fast" took a bit of time, as he kept on saying "frast". We went on to try the went, tent, sent page, but for whatever reason, he struggled with the font of the E's in the book, so we stopped.

The next morning, we did one word with the fridge letters, just to make sure it was a repeatable skill. It was. Since then, he has shown more interest in spelling, stopping in the hallways at school "what word is that?" or saying the letters of signs he sees. We've even started on a few two-letter sound combinations. He understands "sh" and "ng" well, which allowed him to read the word "shopping". And today, while over at my parents, I tried the more complicated rule of what "e" does to other vowels, using "pancake" as an example. That one may take a little time to stick.

So how did we get him to read before three, assuming we can take "credit"?

Owen has read to a lot from the beginning. I started reading him A Prayer for Owen Meany not too long after birth, and made pretty good progress, though we stopped for a time when he was 8-10 months, as he got too fidgety around then (digression: Sophie's World is still in progress. It just doesn't read out loud that well. We got Sophie the Awesome from a book fair at Owen's school, which is much better, and it's part of a series, so more to come there). Into his ones, we heard the bar for reading was 20 minutes a day. We were doing that before breakfast! He went through a long phase where on days he was at home, at least 2 hours were spent reading. When I picked him up from school in his old class, we'd always ready 2-3 books before leaving, among other things, so pickup time always lasted longer than drop off time. He did go through a phase where he only read at bedtime (late spring/early summer last year, I think), but he got back into character.

The other big learning tool has been Fridge Phonics. We got a set, apparently for his second birthday (I thought we got it earlier than that, but that's what the Amazon order history says), which he's liked a lot. My mother's friend then gave her two sets, one upper case and one lower case, that was an older version of the set. I remember one weekend, maybe around June, Owen stayed over and when I went over to pick him up, he had all 52 letters on the floor and we were sorting them into the upper case bag and the lower case bag. He got pretty much all of them, on his own, into the correct bags. Shortly thereafter, I took those letters with me, with the plan to swap them for my set, as I wanted Owen to have a set of lower case letters, having read that helps reading skills develop, since 90+% of letters are lower case. I never did give my mom the set we had at our house (sorry Mom, but you have a grandson that can read. I'm sure the inconvenience was worth it), so Owen has had three letter sets to play with, which we've put to good use (this is from October when Sophie came home):

From Sophie comes home

But the biggest factor is our time. I think the list at the beginning is instructive. In some respects, those things that require active repetition (art, cleaning, etc) we did less of or didn't demand enough from him (making it a passive activity for him), but passive repetition (reading) was easy. So Owen has been very advanced in a lot of memory-based areas. In his class of ~14 last year, he was the best at shapes and colors, knew the most animals, and recognized all the letters around 2, and had most sounds down not too long after that. Miss Barb, his teacher, told us she thought he'd be reading by the time he was three, so that gave us a goal, though we didn't look too hard for material to help us accomplish that. We just kept on doing what we were doing--playing with letters and reading.

When people commented on how smart he was, I would always (and still do) downplay it a bit, stating what he was/is doing is displaying a good memory. And I have no idea if it's an outstanding memory, or just the things that he remembers get placed into the "smart" bucket (shapes, colors, letters, words), rather than the more "cute" bucket (singing a long with songs, random recollections) etc. As a person who people think has a good memory (which isn't actually true--I just openly share what I do remember, not what i don't), I know that's not the end all of intelligence, success or happiness.

Going back to Owen's reluctance to do art projects on his own, when we want him to draw, or paint, or make something with play-doh, he'll often say "I can't", and part of me wonders if he wouldn't be better off just doing that with more confidence, even if it meant he wasn't reading until he was 4. Is he that developmentally advanced? Or is it just tradeoffs between traits and habits because of how we allot time to them? Will Sophie be more advanced than Owen in some of those things because she gets to see him and/or a change in how we divide time with active and passive repetition activities? I guess this puts me firmly in the nurture, rather than nature category.

Operation #3, Umbilical Hernia

My back and arms are sore and I'm really tired. It's been a long day. I had to get up at 5:45am to get to Phoenix Children's Hospital by 7am for Sophie's 9am surgery (which actually started even later). Sophie needed a lot of holding today, although overall she did really well. Despite not having any food since 3am, Sophie endured the wait for surgery better than most people would. She even smiled at just about every person that came in the prep room to check her out.

The surgery itself was pretty quick, about an hour and a half. They made the incision below her belly button and sewed up the hole that was caused by her previous surgery. While she was under they also drew blood (since we were having trouble drawing blood when she was awake) and gave her a new G-tube button (the old one didn't fit well and leaked a lot; it actually fell out yesterday, but that's another story).

After surgery we were able to go to the recovery room before she woke up. She had a really hoarse cry when she did wake up, but she was somewhat easily consoled by standing and holding her (hence my soreness). We gave her 2 oz of Pedialyte, which she tolerated well, so we were able to go home by 1pm (at which point my hubby surprised me by picking up my favorite soup from Dilly's Deli! Thanks, hon!).

She mostly slept this afternoon, but did wake up for some milk. By this evening she seemed mostly normal, but a bit fussy. She even giggled for Nana and me. Now she is sleeping peacefully in her bed, which is where I hope to be very soon!

Thanks for everyone's thoughts and prayers. Even though this was a simple procedure, they are always appreciated! My prayers tonight are for Sophie, but also for the other families at PCH who have issues a lot worse than Sophie's. Today was another reminder of how lucky we are!

Happy 6 Month Birthday, Sophie!

Six months ago today our life changed dramatically. Of course we knew change was coming, but little did we know how quickly Sophie would come and how much our life would be different.

It's hard to believe Sophie is 6 months old. When most parents say that, they mean they can't believe how much their baby has changed. We mean the opposite. Sophie doesn't even seem like her adjusted age of 4 months. A month ago her developmental pediatrician (Dr. Ellis who saw Sophie in the NICU), said Sophie was like a month old in some respects. She has taken great strides in the last month; she smiles and giggles often, and has much better head control. But she still isn't doing a lot of things that Owen was doing at a younger (adjusted) age, like sitting, grasping toys and eating solid foods. Of course this is all to be expected, given Sophie's health issues, but still frustrating. It is hard to "exercise" Sophie's physical and intellectual development when we spend so much time on feeding, and when her temperment is so fragile. She can easily go from laughing (she laughs at her hiccups and when we hold her up to stand on her feet) to crying in a split second. I am hoping her physical, occupational, and feeding therapies will help speed up her development. Maybe I should be thankful - most people fret how fast their babies grow up. :-)

Sophie has thankfully shown some improvement in her nippling. She has really only shown an increase in quantity when we give her a medium flow nipple (took over 3 oz a couple of times), but overall I get a sense that we are turning a corner. We are now trying to get her to a more "normal" feeding schedule (cutting down the night drip and speeding up the time it takes to eat during the day), and trying thickeners in her milk with various nipples. I am trying to get the help of a feeding therapist through the AZ Dept of Developmental Disabilities, which has taken a lot longer than I was hoping.

Owen is dealing with all of this pretty well. He has a Berenstein Bears book about a new baby at home, and we sometimes have to remind him how the book teaches that babies need a lot of attention. Owen is enjoying the new grass in our backyard, playing with all of the different types of balls he has, including a t-ball set he got for Christmas. When he is "playing tennis" or "playing baseball" it really just means he does whatever he wants with those balls. He is not very open to suggestions on how to swing the bat or how to play a game. It's the same with indoor games. He got a few board games for Christmas (Candy Land, Chutes and Ladders, Memory). He will play along with my instructions for a little bit, but fairly quickly he changes the rules and does his own thing. If you don't let it frustrate you, it can be very amusing. And I guess you have to start somewhere. :-)

Another thing I find amusing about Owen is how he never says "I don't know". Any time you ask him if he knows something, he will tell you "yes". But then when you ask him for specifics, he just repeats the question back at you. "Do you know who that is in the photo?" "Yes." "Who is it?" "Who is it?"

Now if you were to ask me what the next 6 months will bring, I would definitely have an answer. "I don't know!"

From O So January 11

From O So January 11