Sunday, November 27, 2011

A Lot to be Thankful For

God has given me so much to be thankful for.

 I am thankful for a child's curiosity.
From O So November 2011
I am thankful my brother and his family live only a long car's drive away (as opposed to a plane ride).
From O So November 2011
I am thankful Sophie is such a smiley baby.
From O So November 2011
I am thankful that Owen and Sophie are starting to interact more.
From O So November 2011
I am thankful for grandparents.
From O So November 2011
I am thankful for friendship.
From O So November 2011
I am thankful for our beautiful state and the ability to get out of town every once in a while.
From O So November 2011
I am thankful for pumpkin pie (and apple pie, and pound cake, and chocolate fudge, and...).
From O So November 2011
I am thankful for beautiful weather.
From O So November 2011
I am thankful for the simple joys of childhood.
From O So November 2011
Above all I am thankful for good health, for my immediate and extended family.
From O So November 2011

Sunday, November 13, 2011

Thanks a lot, Cars 2

When Owen and Keith saw Cars 2 in the theaters I was surprised at Owen's lack of enthusiasm for it.  It was probably a bit overwhelming for him, being his first theater experience.  Plus it usually takes a few iterations of something for Owen to get really into it.  But I guess seeing  scenes on youtube (we don't own the DVD yet) has done the trick, as Owen now requests only Cars 2 cars when we do "scenes".  Which is fine, except Cars 2 was Owen's first introduction to violence (it has a James Bond theme to it, if you aren't familiar).  Words like "fight", "shoot", & "bad guy" are new to his vocabulary now.  Which, I know, was inevitable, he is a boy after all.  But he has started using his cars as a front for doing bad things ("Grem did it, not me!  He's a bad guy, so he does bad things!").  So we've had to explain a few times to him that if Grem does something bad (hit Sophie, hit the pictures on the wall,etc.), Owen will get in trouble since he is the one making Grem do it.  It's only been a few days, so I don't know how well that logic is going to work with a toddler who I'm sure only half understands what "pretending" is.

Other than that, Owen has been pretty good, behavior wise.  Sleep wise he's been getting more sleep now that it's darker in the mornings, but he still comes into our bed a lot.  Keith and I are trying to decide how to handle that.  We try and take him back to his room if he comes in, but it's much easier to let him in, and often times we don't even wake up when he climbs in.  He tells us he feels "safe" with us near him, and lonely in his room (although he goes to bed in his own room fine).  Sometimes he comes in crying with such fear in his voice I really feel sorry for him.  We tried buying him a McQueen pillow (which he also uses for naps at school), but he doesn't show that much interest in it (or Pooh, or Teddy, or his Cars blanket, etc.).  He's never had any attachment to an object, which may be the problem (maybe we're his attachment).  We know we could just lock our door (and we'll probably try that at some point), but we're not looking forward to the few nights of no sleep that will bring and I'm afraid that will just lead him to needing us in his room.  I'd like to think this is a phase that he will outgrow, but conventional wisdom seems to tell us that we need to do something about it.  What would happen if we just continue to let him come into our room?  We don't lose that much sleep when he does, and frankly, sometimes we enjoy it.  But is this going to teach him bad sleeping habits long term?  If you have any experience with this, I'd be interested to hear your story.  

Sophie has had a cold the last few days, with a very runny nose.  Which means that sometimes she only sleeps when Keith or I hold her upright in a chair.  We can fall asleep in the chair, but not very well.  Plus I felt sick yesterday as well.  But it seems like it was a good weekend for it.  This was the first weekend in a while that we didn't have a lot of plans, and today was a bit of a rainy day.  I just hope she gets better by next weekend, when our busy schedule picks up again.  

If you recall my last post (written a whole month ago! yikes! sorry!), Sophie also had a cold then.  And eye surgery, and teething.  And I explained how she wasn't eating or drinking well.  Well, she is back to eating normally (at least for her), but her drinking has not really improved.  She will only take a few sips of formula, and prefers to do it herself.  Good news is that she has transitioned to sippy cups, which she can pick up and drink herself.  She does drink more water, so it might be a taste thing, but even that she doesn't drink a whole lot of.  We tried cow's milk, which she really liked, but it seemed to make her upset.  We kept a food log to give to a nutritionist, so we'll see if they have any suggestions.  She has had 3 of her 4 eye teeth (the most painful baby teeth) come in over the last month, so I'm hoping things get better after the last one comes in.  She currently has 15 teeth already (which is a lot for her age), so only 5 more to go!!

We all made out pretty well at Halloween (well, all except our teeth and our scale).  Owen did a lot more trick or treating than last year (with the help of his bike), so his pumpkin was pretty full.  We are allowing him two treats a day, so his stash will last quite a while.  We had less trick or treaters than we expected, so Keith and I have our own stash of goodies, which makes it less tempting to break into Owen's stash.  

We've had lots of fun at various Fall/Halloween festivals (pictures below), and look forward to more fun over the coming holidays!
From O So October 2011
The air pillow at Vertuccio Farms was a ton of fun because the parents were able to join in!
From O So October 2011
On our way to Freestone Park for the Halloween Festival
From O So October 2011
Sophie the ladybug
From O So October 2011
The ladybug and Lightening McQueen on Halloween night
From O So November 2011
It's finally been cool enough for Sophie to wear her fun sweater! Made for her by our good friend Jason's mother.
From O So October 2011
Earlier in the month in Grandma and Grandpa's boat at Saguaro Lake
From O So October 2011
Captain Sophie!
From O So October 2011
Sophie and Toolman
From O So October 2011
Look at me, I'm a star!

Monday, October 10, 2011

What a Difference the Weather Makes

I am writing this at the end of a beautiful weekend here in Phoenix. Last weekend was still in the 100's, but this weekend was in the 80's, and earlier this week we even had a couple of days in the 70's. The upper 90's are forecasted this week, so we won't be able to keep the air conditioning off, but at least the end is in sight. One bad thing about working at home is that you're stuck at home for a very large percentage of your week. It does wonders to my general outlook just to have the windows open in the house.

So this weekend we got outside. While Keith played Ultimate in Flagstaff on Saturday, Owen, Sophie and I went to Saguaro Lake with my parents. I love the water, so any time I can get on a boat is relaxing for me, and Owen enjoyed playing on the beach. Sophie was a bit fussy at times, but enjoyed it when the boat went fast, and she always seems to like being outside. Today Owen and Keith went on a shopping "adventure" (IKEA and Costco in one trip!), while Sophie and I went to church. This afternoon I was able to go running - yes, in the middle of the afternoon (!) - with Sophie for the jogging portion, and some faster "sprints" after stopping back in at the house. And then we all played outside before dinner.


Last weekend was Sophie's 3rd 1st Birthday: October 1st was the day she finally came home from the NICU, 10.5 weeks after she was born. We were thinking of having some sort of get together to celebrate, but our weekend was jam packed already. Friday night we had my brother, his wife, his two year old son, and my parents over for dinner. My brother lives in San Diego, so it's always a treat to get the cousins together, especially now that they are old enough to kind of play together. We had two birthday parties to go to on Saturday, which we ended up splitting up for. Owen and Keith went to a party for Owen's school friend Abby, while Sophie and I went to Lexi's first birthday party. Lexi was actually born in the same hospital as Sophie, on the day Sophie was discharged. If we weren't so busy taking her home we could have been one of the first to meet Lexi! Lexi's party was about 40 minutes away, which worked out fine because we then went to my parents house (in the same direction) to spend more time with my brother. On Sunday Owen and Keith went to their first Giants game (at University of Phoenix stadium). Keith's dad got tickets, so of course he wanted to share them with his grandson. Keith said he knew Owen was bored when he actually asked to be tickled. He slept during the 3rd quarter, but they had to leave at the beginning of the 4th (the most exciting part) because Owen wanted to use the bathroom at 1743 (that's what Owen calls our house). Keith took him to the restroom at the stadium, but a mini-meltdown ensued. So Owen had to hold it for an hour to get his wish.

Going backwards from that weekend, on Saturday, we went over to Bryan, Megan, Finn, and Maya's house for dinner. We stayed later than we should have, but the boys (Owen, Finn, and Keith) were having too much fun playing. Then the other parents joined in for hide and seek and it picked up a notch with a parent - child pillow fight, which was very cathartic for the parents. It started with Megan and Bryan tossing pillows at Finn, and him asking for more, so then Owen wanted to "play" as well. So we'd throw pillows at the boys, at they'd fall to the ground laughing.

On that Friday, Owen's school had a "Welcome to My World" day. Parents were invited to spend the morning with their kid in their classroom. Keith took him to school, and was there for circle time, an early snack, the playground and the start of art class. I joined them at art class, then we did free play (which Owen wanted to spend in "Al Oft", the loft in his classroom), and then more circle time. It was very interesting to see how they handled things at school, and more importantly, how Owen acted. Owen was definitely excited to have us there. During the circle time they learned about shapes, the seasons, colors, and did a few songs. While most kids were pretty attentive to the teacher, Owen seemed to be all over the place. He participated, but it was hard for him to stay in one spot and didn't always follow the dance moves. It really struck me by surprise, as Owen has always been a bit shy. Keith asked his teacher if he's always like that, and she said only sometimes. I guess he was just excited to have us there, but I still wonder if that's a potential sign of ADD at this age. While he can play with his cars for a while, he doesn't seem to really focus on anything for any length of time. He gets distracted in the bathroom, we have to prod him sometimes during puzzles ... it's probably nothing, but I think both of us pick up on some signs that some of his socialization skills are a bit different.

The day before that, Thursday, Sophie had her surgery to fix her crossed eyes. During the outpatient surgery they go in and loosen the muscle behind each eye so they can correct themselves together. At her checkup this week the doctor said things looked pretty good, but it would take 6 weeks to tell if it was completely fixed or if more surgery would be needed. Poor Sophie pretty much had a triple whammy that week; surgery, a cold, and teething. She handled everything pretty well, but her eating has taken a nosedive. Her solids intake has gone down noticeably, but even more troubling, she started to refuse the bottle completely. She finally took about 3 oz from one of her bottles today, and has eaten more purees, so hopefully things are improving. It's been very frustrating, but I keep reminding myself that she wasn't feeling well (I think it's the teething more than anything, but who knows for sure). Whatever it is, it's pretty evident we are not getting rid of the G-tube anytime soon.

The good news is that Sophie is now crawling all over the place and is getting stronger. On her third first birthday, she stood up from her stool to a music table six times. Today she even pulled herself up (actually, she pushed herself up) from the floor to a stand in front of the kid piano! She spends a lot of time in front of the 3 steps that go up from our family room trying to figure out how to get up them, and she finally got one knee up today as well. Sophie's PT suggested that she might not walk until she is at least 2 years old, but I wouldn't be surprised if Sophie proves her wrong.

Owen's behavior has also improved a bit lately (from my last blog on the subject). We started timing him when he went potty to make him more efficient. Sometimes we actually use the timer, but most of the time the best motivator is for us to count how long it takes him to do a step (how long to get his underwear and shorts on, how long to flush and move the stool, how long to wash his hands, etc.). We also found that tone matters. We've tried a more positive tone with the counting ("how fast can you do this") rather than a "if you don't do this by xxx time". This has also helped, as he's been responsive to the latter when it carries weight (we'll put cars, or some other toys away), but not so much when it's just a trying to get him to do things. Mornings are a lot less stressful now that we've given up on forcing him to go potty before we go downstairs (now we wait until he says he needs to go), and we've gotten him in the habit of eating breakfast (at least most of it) at the table first before playing (so we don't have to get him to stop playing). So it's a little easier to get him to do things, but he still mixes in some prolonged dawdling and the occasional mini-tantrum throughout the day.

One reason it's been so long since I've blogged is that I wanted to get the pictures loaded to Picasa first. I uploaded a lot to the September album, some of which is below. October has been just as busy so far, so more pics will be coming, and with this beautiful weather, hopefully more of those pictures will be in the great outdoors!!
From O So September 2011
Owen playing dressup.
From O So September 2011
Sophie and Toolman
From O So September 2011
Look at those beautiful eyelashes!
From O So September 2011
Owen dancing and singing "Life is a Highway"
From O So September 2011
Sophie in her room.
From O So September 2011
Owen's birthday card for Mommy
From O So September 2011

From O So September 2011

From O So September 2011
Welcome to My World day at Owen's school
From O So October 2011
This was Owen's face during most of the game.
From O So September 2011
Grandpa, Owen, Cousin Ben, and Uncle Ken
From O So September 2011
Sophie and Aunt Katie
From O So October 2011
Sophie pushed herself up to a stand!

Friday, September 16, 2011

Crawling and Talking on the Phone

When Owen was younger, he liked things he could carry around and push buttons on. Of course that meant our cell phones and our home phones. That eventually progressed to actually talking on the phone (with the grandparents, of course!) At first he just listened to the voice on the other line. Then he started answering questions with a one word answer. Then longer answers. Then longer conversations. This past winter Nana was able to keep him on the phone for a good 20 minutes while Keith was feeding Sophie and I was out running.

We got a new phone system for Christmas, which was harder for him to hold, and had a better speaker phone function, so he takes advantage of that (hands) free-dom, by often running around the room singing some sort of song. This past week our friend Jason called me to wish me a happy birthday. Owen kept wanting me to get off the phone (he wanted to play with his cars with me, of course), so I asked him if he wanted to talk to Jason. Owen remembers Jason from Christmas and Sophie's baptism. Back when saying good nights to friends and family was part of the bedtime routine, he always included Jason, and he's always mentioned when we do the States puzzle (he is the honorary New Mexican). Owen surprised me (and I think Jason too) by starting the conversation himself (another sign Owen may be coming out of his shell--the last two weeks at school, he's said hello first to other adults in the hallway). It went something like this:

Owen:  What's your house number?
(I had to repeat the question because Jason didn't hear it.)
Jason:  I live in New Mexico, house # 220.
Owen, without skipping a beat:  What's your phone number?
Jason:  Huh, 123-456-7890.  What's your phone number?
Owen, pauses, then says:  123-55555
(I changed our first 3 numbers for privacy purposes, but in the conversation he got it right.  But note he put too many 5's)
Jason:  Wow, that's a lot of 5's.  How many 5's are there?
Owen, proceeding to count on his fingers:  1, 2, 3, 4, 5, 6, 7
(Mommy laughs)
Jason:  Oh, Owen, I have a joke for you since you told me the one about why 6 is afraid of 7
(Owen then runs around the room singing loudly "Cause 7 ate 9!")
Jason:  What did zero say to 8?  Nice belt!

I then explained to Jason that Owen didn't hear it because he was too busy running around, but that I'd explain it to him later.  Keith and I did explain it later, and Owen did get a big kick out of it.

In more number news, Sophie had her 2nd 1st Birthday this week.  Huh?  You read that right.  That's what I called her due date (Sept 15th).  So now Sophie is "adjusted" 1 year old.  And big news to go along with that:  she is now crawling!  On Monday, (the 12th, a day before my birthday), I saw her crawl about a foot.    The next two days she would move one leg, maybe two, then fall on her belly.  So I figured it might take a while before she actually started crawling on a regular basis, but she decided on Thursday that she liked it and was going to stick with it!  The video below is from Thursday; she got even better at it on Friday.

From Drop Box

I guess it's time to re-baby proof the house!

Friday, September 9, 2011

The Therrible Threes

First I want to thank everyone for your comments in regards to my last post. Your thoughts and prayers are very much appreciated, and are working! Sophie remains healthy, which is a major blessing. She is scheduled for eye surgery on Sept 29th, but it is outpatient and will hopefully not be a big deal.

A lot of you expressed that if we need anything, to let you know. Well, since you're at it, if you could add Owen to your prayers, that would be great. :-) He is actually the one that is causing me the most gray hairs (Keith is equally frustrated, but he is somehow immune to graying so far). We heard a lot of people say that they thought the 3's were worse than the terrible 2's, and I would have to agree. I would definitely not want to be a 3 year old. Poor Owen gets frustrated and throws a mini tantrum at least a dozen times a day. He's still trying to figure out how this world works, and any time he doesn't get what he wants or doesn't understand something, he gets frustrated. Today we were setting up his train set, which has a semi-circle garage and a triangular piece that is supposed to hook up to it. He wanted to use that piece somewhere else, so we were trying to fit other pieces into the garage. He got frustrated when we couldn't fit in the pieces he wanted. We tried to show him what options worked, but he wouldn't accept any alternatives. He seemed to think we were not *allowing* him to put the pieces in he wanted, instead of the fact that they just couldn't physically fit in (you would think in this case he would be able to *see* that). Keith tried to explain that some things just don't go some places, like grapes don't go in your ears. That made him laugh, but still didn't seem to get him to understand. So we try and explain things as best we can, but his young mind has a lot to try and comprehend. And now I'm worried about the next time he has grapes. :-)

The most frustrating part is trying to get him to do something. Every morning is a struggle to get him to go potty and get dressed (even though we try and do the same routine every morning). He is out of diapers, but I wouldn't call him successfully potty trained. We used to have him on a steady schedule of potty breaks, but then he didn't really learn how to recognize when he had the urge and tell us he needed to go, so we stopped that. Now he seems to not like going potty and will only let us know he needs to go when it's pretty urgent or his underwear is already wet. Every night is a struggle to get him to wash his hands before dinner. We do it every night, and we warn him when it's coming, but he still fights it. We try and keep his bedtime routine constant, but every night takes longer than it should. Tonight I started the routine a little after 8pm with dessert (grapes), then bath time, potty, teeth brushing, getting pajamas on, reading books, then a story in bed. I think he finally fell asleep at 10pm. The hardest part tonight was trying to get him to pick his pajamas and books. If he picks then he always changes his mind, and if he says he wants us to pick, he's never ok with what we pick. We want him to learn how to make decisions, but when it takes him 10 minutes to pick out pajamas, it just doesn't work. We are trying to teach him that if he takes too long to do things then it means less time for fun things like playing with cars or reading books. But that upsets him, which means he's less likely to actually make a decision or to do something.

So our self-confidence as parents takes a hit often. It's hard for us to know how much of Owen's behavior is normal for a 3 year old, or if our parenting style is to blame. And of course we don't do much research on the subject, because, well, we're too busy trying to be parents! I do try to remind myself that *some* things have gotten better, like brushing his teeth, and being able to leave his room before he's asleep.

And of course he's not always crying. He can still be a lot of fun, and he balances out his frustrated times with plenty of hyper-excited times. This video is him singing part of "Life is a Highway" when he apparently had too much energy. I wish we could bottle that energy. I know Keith and I could use it sometimes!

In other news, Owen started in a new classroom for the new school year a couple weeks ago. The adjustment may be partly to blame for his behavior of late. Owen had a week off from school before the new year started, so Owen, Sophie and I joined my parents at a time share in Pinetop for the week (Keith stayed home to get some work done around the house). I'd be lying if I said it was a totally relaxing trip (for the above reasons and because I checked into work every day so as not to get too far behind), but I got out of town during the hottest week of the year, which was nice. Every afternoon we had scattered storms, which was really cool (literally and figuratively). Owen enjoyed going on a few hikes, and Sophie seemed to just enjoy being outside (a rarity this time of year in Phoenix). I enjoyed the change of scenery, spending time with my parents and taking pictures on our hikes. I have attempted to insert a slideshow below, but if that's not working, you can see the pics here.

Saturday, August 27, 2011

A Diagnosis

We received the call from our geneticist a few weeks ago (I am delayed in writing this due to a vacation in Pinetop, which I will write about later), and it's official: Sophie has Kabuki Syndrome.

Kabuki is a rare (1 in 32,000 births) genetic disorder which is named after its most common physical feature, long eyes (in Japanese Kabuki theater actors use makeup to make their eyes look long). It is associated with a myriad of medical issues and mild to severe intellectual disability. The physical features that Sophie has are the long eyes, long eye lashes, small head, pronounced finger pads, and arched eyebrows that fade on the outer half. She so far does not have the protruding ears and depressed nasal tip that is also common in KS. Because of that, our geneticist says people may not realize that she is "special" just by looking at her. The health issues she shares with KS are eating problems, weak muscle tone, strabismus (eye issues), reflux, kidney abnormalities, heart abnormalities, and rectal abnormalities. Interestingly, her biggest medical issue, biliary atresia, is not listed as an issue (the documentation doesn't list any liver issues).

It is actually uncommon for KS children to be diagnosed at such an early age. Most kids don't get diagnosed until they are 3-4 years old when the physical features are most visible, and sometimes even older. Given that Sophie doesn't have all of the physical features, it's almost a blessing to receive a diagnosis. Most people have to wait years and endure many tests before they figure out what "explains" the issues the child is having. Our geneticist (Dr. Aleck Kyrieckos if you're interested) recently contributed to a nation wide study on KS. He said that of the 65 or so kids in the study, his practice has 11 cases. So it seems like we saw the right doctor!

The field of genetics seems to be a big case of "the more you know, the less you know". It's really quite interesting. In Sophie's case, she was diagnosed because a test confirmed a mutation in the MLL2 gene. But only about 70% of KS cases have that mutation. Dr. Aleck explained to us that our genes create proteins, and in the case of a mutation, the wrong protein can be created. But how that one mutation can cause such differing and widespread issues in each case is not fully understood. Our doctor made a point to tell us this wasn't caused by anything we did, it just spontaneously happened (you can inherit it, but since neither Keith nor I have it, this was a new case). Which to me really just means that the medical community doesn't know what causes mutations. Dr. Aleck did say that the mutation likely happened in the egg or the sperm before conception, which surprised me. I assumed it was something that happened during pregnancy.

So what does this mean for Sophie? It's hard to tell. Dr. Aleck said that most of her medical issues should be known by now. I was expecting him to give me a list of more specialists to go to (to check for other common issues), but he said that wasn't necessary. For now he said we need to focus on her physical therapy and her feeding issues (which we are). As far as intellectual disabilities, we just have to wait and see. He did say that since she was delayed in babbling, that is a sign of some disability, but it's too early to say what we can expect.
The intellectual/behavioral issues is probably what scares me the most. Learning always came easy for both Keith and me, and Owen seems to be ahead of the curve, so this is new territory for us. And I was recently reading about some "epic meltdowns" that some KS kids have. Not looking forward to that.

And of course there was the part of me that was hoping that Sophie would end up being "normal" and just outgrow her medical issues (even though the doctors said shortly after birth that Sophie most likely had some kind of syndrome since she had so many abnormalities). To think that Sophie will likely not have the normal adult life of go to college, get a job, get married and have children is hard to swallow. But now there's also a part of me that is looking forward to (and currently enjoying) caring for someone so "special". A few years ago I overheard someone say that they kind of hoped they would get the swine flu, because they liked having a lot of varied "experiences" (even bad ones) to enhance their life. At the time I thought she was crazy, but now I can somewhat understand that. The past year has changed my perspective on many things, and as Sophie grows bigger, I grow along with her.

If you'd like more information about KS, there is a good website at http://kabukisyndrome.com/.

Sunday, August 7, 2011

Teething Bites!

...both literally and figuratively. Sophie bit me twice today. The second time my reaction may have scared her enough to not try it again, at least not anytime soon. It's another clue that she is teething. It's really quite frustrating, cause she has taken a step backwards in a lot of things: drinking from the bottle, eating solids, and sleeping.

At one point earlier in the summer Sophie was doing so well with the bottle - even finishing some bottles completely. Now she occasionally completely refuses the bottle. Her GI recently said that we should try to get Sophie to eat more baby food (she said normal kids would be eating 3 jars a day and we were at 1.5-2 jars), but lately she's wanted less. I gave her Greek yogurt the other day for the first time, and she absolutely loved it. But I've tried it twice since then and she gave me this look like "What in the world are you feeding me? This is terrible!" Earlier this week she woke up around midnight and would not calm down unless I held her (standing up) and walked her to sleep. Now she's easier to get back to sleep, but wakes up 4-6 times a night.

A little over a week ago I found a new tooth that had broken through (her upper right molar). She still only has 3 bottom incisors, so I keep expecting the fourth incisor or another molar to pop through, but nothing yet. I am, of course, *assuming* (or maybe it's "hoping") that this is all teething. I guess only time can tell. It does make me believe that we won't be able to take her g-tube out until she has all her teeth.

Good news is that Sophie's developmental pediatrician was very pleased with the progress she saw from her last appointment. She says Sophie is doing things in the 6-8 month range, which isn't too far behind her 10 month adjusted age.

Sophie had a great time at her birthday party. We had the grandparents and a few friends and their kids over for swimming, dinner & cake. I wasn't planning on giving Sophie any cake (I didn't want her to choke on it), but she absolutely loved it!! Sophie's feeding therapist said that sometimes sweets make kids forget about any feeding issues they have. It made for some great pictures, too!

For the last two weeks Owen has been going to swim lessons 4x a week. He was a little hesitant at first, but at least a dozen times over the two weeks he would turn around (he sits on the steps waiting his turn) and tell me "Mommy, I'm having fun!" with a big smile on his face. He learned how to blow bubbles, climb out of the pool, hang on to the side of the pool and make his way to the steps, and "airplane" (floating). At the end of the two weeks he got a ribbon for floating by himself, even though he only floated by himself for 5 seconds, not the 10 seconds that they said he needed to do. At the center where we did the lessons, SwimKids USA, they also do gymnastics. Every day Owen wanted to watch them do gymnastics through the window, and wanted to do it himself. So in a few weeks he's going to move to once a week for swim lessons, and we'll add gymnastics in there too. I can't believe I'm already filling up his activity calendar outside of school, but swim lessons are important, and gymnastics will be good for him (and it's great that he showed such interest!).

From O So August 2011



From Sophie's 1st Birthday Party


From Sophie's 1st Birthday Party


From Sophie's 1st Birthday Party

Wednesday, July 20, 2011

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!

Tuesday, June 14, 2011

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