Happy Birthday Sophie!!

I know this is very cliche, but I'm going to say it anyway: I can't believe Sophie is a year old! Looking back at Sophie's birth story and pictures, the memories are very clear, yet otherworldly. I can still remember what it was like to hold a baby that small. She looked so different back then, yet I can see features in the pictures that are distinctly Sophie. The joy, and pain, from that period in our lives is still very fresh, albeit more comfortably behind us. About a month ago we ended up driving by the hospital at night and I broke down crying.

Part of the reason why it's hard to believe she's a year old is, well, she really isn't. Her adjusted age is 10 months, and developmentally she's even behind that. She's sitting really well now, but isn't crawling yet. To think that a lot of kids are walking by now just blows my mind. I have to be careful to not compare Sophie to other babies her age (or even her adjusted age). The important thing is that she is progressing. They say that premies "catch up" to non-premies by 2 or 3 years of age (Owen was probably caught up by 1.5 years). That may not be the case with Sophie. If she is diagnosed with a syndrome, she could have delays her whole life. That is just something we will have to deal with.

But the good news is that Sophie is blessed with good health (as far as not getting sicknesses) and our lives are much easier than when she first came home. Sophie is a very happy (unless you make her work too hard!) and extremely smiley baby. She captivates everyone she meets with her smile, which she gives out freely. She is a joy to take care of.

We didn't do much different today to celebrate. Keith stayed home, which was nice. Owen did give her lots of birthday hugs, which is always cute, yet a bit scary since Owen isn't always gentle enough with her. On Saturday we are having friends and family over for a party. I know a lot of people just do a small family party for the first birthday, but I felt like celebrating in a bigger way (and we like hosting parties).

We did get up early to commemorate the actual time of Sophie's birth (5:15am) with a picture. I set my alarm for 5:12 thinking that would give me a few minutes to get the camera ready. What I didn't take into account was that I hit my snooze button while I was half asleep and didn't get out of bed until 5:20am. Oops! But if I didn't tell you, you wouldn't have known the difference, right?

Then:

From LGA Arrives!

From LGA Arrives!

And Now:

From O So July 2011

From O So July 2011

From O So July 2011

Happy Birthday Sophie!! We are so blessed to have you in our lives!! We love you!

Back to Reality

Coming home from vacation really sucks. I've always hated it, but coming back from our week-long vacation to San Diego last week was especially hard for me (I'll leave my comments about the trip to the end of the post). I think there are several reasons why it was so difficult to come home (other than the normal "we had a great time" and "it was nice and cool"):

1. On the trip we were (for the most part) just a normal family; no therapies, no doctor visits for Sophie.


2. We got to spend some good time with my brother and his family. I really miss them!


3. Since I work from home most of the time, I spend 95% of my time here; getting away from the messy house for a whole week was luxurious.


4. The vacation was long overdue.

And going to a genetics appointment on Monday morning was a tough reminder of what our "normal" life is these days. Sophie's geneticist is going to test Sophie for Kabuki Syndrome. He said it is in no way a diagnosis at this time, but it does fit a lot of Sophie's medical issues and a few physical characteristics. It is named for the Japanese Kabuki dancers who do their makeup to make their eyes look long. Long eyes has always been a striking characteristic for Sophie. It will be a few months before we get any results, so I'm trying not to worry about it too much, but at the same time preparing myself if we do get a diagnosis.

And speaking of Sophie's eyes, since I last wrote Sophie has gone to the eye doctor. I had found an eye lash that was growing right next to her eyeball and was constantly in her eye. After consulting with a friend of ours who is an opthmalogist I ended up pulling it out with tweezers (and to think, with Owen I was afraid to cut his nails!). A few days later we saw Sophie's eye doctor, who said the eye lash was nothing to worry about, but he noticed she was crossing her eyes, which is a problem at her age. He diagnosed her with congenital esotropia, which means that one of her eyes tends to look inward. She has to wear an eye patch on the good eye for 1.5 hours a day for 4 weeks in the hopes that it will strengthen the muscles connected to the bad eye. Good news is that her eye sight is fine right now; bad news is that this could mean surgery on her eye (which my friend assures me is not a difficult surgery so I shouldn't worry).

As for Owen, we are trying (with some success) to convert him to "Independent Owen" (a term we actually use with him). His teacher said we need to teach him to go to the bathroom by himself. We had been reading to him on the potty and helping him with each step of the process. We took the opportunity of the vacation to change things; we stopped reading to him and tried to teach him how to dress himself. When we got home Keith sat down with him and explained that he was getting older and needs to start doing things on his own. He still sometimes throws a tantrum when we try and get him to do some stuff on his own, but giving him a lot of praise for when he does seems to be working. Vacation did mess up his record of sleeping through the night, but we expected that. This is all at the same time we are discontinuing use of the star chart, mainly because we ran out of the Cars that we gave as prizes.

Now on to the good part. Our vacation was great! We stayed in Carlsbad at a condo right across the street from the beach (it was a time share week from my parents; they stayed on their boat). My brother lives in San Diego, so it was great to see him and his family, and to celebrate cousin Ben's birthday. We took the kids sailing for the first time, went to Sea World, picked strawberries, played on the beach, played a lot of card games with Owen (Go Fish, War and Crazy Eights), and my Dad and I took standup paddleboarding lessons. I hesitate to call it relaxing, since we did go with a 3 year old and 10 month old after all, but we certainly did enjoy ourselves. The kids did pretty well, especially given the fact that Sophie was teething (her tooth popped through yesterday), although you could tell Owen was ready to go home towards the end of the week. Here's some highlights, with more pictures posted on our Picasa site.

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

From San Diego June 2011

1 healthy baby + 1 smart cookie = 2 happy parents

We received wonderful news about Sophie today. The latest VCUG shows no kidney reflux, which means Sophie doesn't need kidney surgery!! Her urologist said back in December that she would probably need the surgery this summer. She still has a small dilation in her right kidney, and still has a duplicated kidney, but without the reflux those aren't problems and just need to be monitored. This is fantastic news!! I was not ready to deal with another surgery; even if all went perfectly well during the surgery and recovery, it would set her back on some of her development, which I would hate to see. Sophie still has her developmental issues to deal with, but this means that she currently has no major medical problems that need treatment (her liver will always need to be monitored, but for now is working fine). This is a huge relief!

I said "major" medical problems because Sophie has not outgrown her GERD (Gastroesophageal reflux disease). We were trying to wean her off her medication, but last week she started vomiting after almost every feeding. After 4 days of taking the medication every day (we were doing every other day), she is doing much better. I was hoping to get rid of the medication soon, but alas.

Not to be completely outdone by his sister, Owen required a trip to the eye doctor a few weeks ago. His teacher noticed one of his eyes had trouble focusing. The doctor confirmed that one of his eyes did wander when looking at far objects (called exotropia). Fortunately it is not bad enough to require glasses or any other treatment, and he may outgrow it. We go back to the doctor in 6 months to make sure it doesn't get worse.

If (really just "when" considering Keith and I both got glasses in grade school) Owen gets glasses, it will fit his personality to a T. Owen has shown a big interest in spelling lately. Short words he can figure out the spelling himself, and larger words he asks us to help him with. We generally just have to sound out the word and he can figure it out. (Although, boy, the English language is tricky!) It's interesting to note how he always relates letters in new words to words he already knows, such as "P, like after the O in Sophie".

And now Owen has shown an interest in addition! He'll use his fingers (and Mommy or Daddy's fingers if it's more than ten) to count up the total ("4 plus 5 equals...1,2,3,4...5,6,7,8,9!"). We haven't been able to get him to start counting from the first number being added instead of 1 ("4 plus 5 equals...4...5,6,7,8,9"), but he'll probably catch on soon. I started him on subtraction a couple of days ago. When he asked what 9 minus 10 was I wasn't sure how to answer! (Obviously I know what the correct answer is, but he's too young to understand negative numbers, right?) Sophie's speech therapist commented that a public school is probably not going to give Owen what he needs. I'm not sure what we'll do with his schooling, but for now it's fun to come up with new spelling and number games!

May has been a fun month so far with a Derby party, Mother's Day and Sophie's baptism. Below are a few pics, and more can be found on our Picasa site.

From O So May 2011

Friday Night at the Movies in the park (that's what Owen does when you tell him to smile):

From O So May 2011

Mommy and Sophie in their Derby hats:

From O So May 2011

Mother's Day:

From O So May 2011

Celebrating Grandma's birthday:

From O So May 2011

Sophie's Baptism (the gown she is wearing was Nana's baptismal gown!)

From O So May 2011

My parents and brother and his family:

From O So May 2011

Sophie with Daddy's hat:

From O So May 2011

Owen playing with the backhoe that Toolman restored (was Uncle Charles's as a kid):

From O So May 2011

Yes or No

Owen seems to be going through a phase where he wants very specific directions about things. He has no problems making decisions about some things; he'll pick out what he wants to eat, or what he wants to do if given a choice. But if we're putting stickers on something, he wants us to tell him exactly where to put the sticker. "No, YOU tell me!!" is something we hear a lot if we try to get him to decide. If we're doing a "scene" from Cars, he gets upset if we don't show or tell him exactly where to put the cars; if we say next to Sally he'll say "On this side or this side?", even if there is really only one open side. And lately, he'll add "Yes or No!" after a pointed question. "This side? Yes or No!" And if we answer with anything other than a direct yes or no, he gets upset. Answers such as "I think", "maybe", or even "yep" leads to an even more emphatic "YES OR NO??!!!". And if we don't answer that? He stomps off crying. I blame his Daddy, cause, well, everyone knows he's the picky one. As he would say, look who he married, and look who I married!

The good news is that Owen is doing really well with potty training. He's been wearing only underpants except at night. He even went to the zoo in underpants. His star chart really seems to be working. He gets 5 stars if he asks to go potty then goes, and when he gets 10 stars, he gets a toy car. Other things are worth 1 or 2 stars. The only thing that it hasn't helped with is staying in bed all night (worth 10 stars!). We've been very lax in trying to break him of the habit of coming to get us at night. We just don't have enough motivation to lock him in in some way (which is likely the only way to nip it in the bud). I guess we're hoping he'll out grow it (or maybe get over it once Sophie is out of our room). Or maybe we secretly don't mind waking up and finding him in our bed (as long as he's sleeping and not fidgety). See reason #1 of Why Having a Toddler is Like Being at a Frat Party. :-)

Sophie has her first cold, but seems to be handling it pretty well. I figured that would happen as soon as I quit pumping breast milk for her, which I recently have. Never would I have thought that I would make it 9 months, but I did! Now I can finally say goodbye to my pump, which is kind of bittersweet. It was definitely a hassle, but in a way it's kind of sad; it's a reminder that I'm done with breastfeeding forever, and once Sophie turns a year old, I'm done with babies! Yikes! I felt old when I became a parent, but I really feel old now that I'm done having kids. We've always said we'd like 2 or 3 kids, but given the fact that my body apparently produces premies, we definitely have to stop at 2. I don't really want more than two kids, and do look forward to getting out of the baby phase, but it still is sad to think about.

It's been a while since I've posted. In the last month Sophie has rolled over, is doing great at holding bigger toys, and is doing better at sitting up. Her therapists are very happy with how engaged she is becoming with her surroundings. Just a few short weeks ago she didn't like being on her tummy for very long, but now she rolls over like it's nothing, and is even trying to scoot to reach things. Before long, she'll be crawling!

Are we ready for that? Sorry, Owen, but my answer would have to be yes AND no! :-)

From O So April 2011

From O So April 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

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