Looks like I haven't posted since Thanksgiving, so I've got some work to do to get you caught up. Here's what happened in December for us.
First, the bad: Sophie spent a few days in the hospital the week between Christmas and New Years. About a week before Christmas, Sophie was diagnosed with a urinary tract infection (UTI). She slept a lot and didn't eat much, but felt much better once she got on antibiotics. But then she started getting sick again the night of Christmas. A trip to urgent care the next day, and she was on a different antibiotic. But then that night she got even worse, and after vomiting 4 times in an hour and with a 105 fever, I took her to the emergency room. They admitted her to the hospital to get some IV antibiotics and some IV fluids, and to do some tests. The culture for UTI came back negative, but her doctor still thinks that was what was causing her fever. Sophie wouldn't let me put her in the crib to sleep, so we slept together in the rocker or on the couch. We were at Cardon's, which is nice and new and accomodating to kids, but I wasn't terribly happy with the service or the lack of updates from our doctor (our pediatrician, not the hospital doctor). Overall not a very restful or fun experience for either Sophie or me. Sophie was still not feeling well for a couple of days after we got home, but this week is immensely better and back to her happy self.
Other than that, our Christmas was good. Sophie wasn't that into the presents thing, probably partly because she wasn't feeling well. We tried not to go overboard with gifts for Owen, but the grandparent's could not be contained! Owen was most excited about his Cars (and in fact probably would have been just as happy if that's all he got). He's still obsessed with acting out "scenes" from the movie. Sophie got some great toys that her therapists recommended.
And we really enjoyed seeing family. Keith's aunt and uncle visited earlier in December, and Keith's brother and my brother and his family were here for Christmas. Owen enjoyed playing with his cousin.
He also enjoys playing with his new neighborhood friends. There's a cute 2nd grade girl that lives down the street that keeps coming to our house to see if Owen can play. He's usually at school when she comes by, so she acts all disappointed when I tell her he's not home. Owen's too young to play outside by himself, but when we get a chance, one of us goes out with him. It's fun to see what kinds of games the kid's come up with and what they talk about. Why they have such an interest in having Owen play with them (since he's so much younger than them), I don't know, but it's cute.
Now that Sophie's feeling better, she's been moving around a lot. She likes crawling over things. If we play outside she likes climbing up, and then sliding down, the cornhole boards we got for Christmas. She can go down the stairs now if she already has her feet at the top stair, but hasn't quite figured out how to turn around when approaching from the top. She knows that she has to go backwards, but since she doesn't turn, she just gets farther from the steps when she backs up. This frustrates her, but is funny to me. She'll eventually get it, but I can tell these things come slower to her because of her syndrome.
So now it's January and we put away the decorations, and attempt to pack up some of the old toys (and our stuff!) to either keep for Sophie or give away. Keith convinced Owen to go through his Cars 1 cars to sell the ones he doesn't play with anymore (the stores only sell Cars 2 cars now, so there is a good market online for the old ones). It took him a while to understand the concept. Keith kept telling him that he wouldn't see them again, but Owen kept responding with "But we'll be able to play with them at their house!" So we'll hold on to them for a while before we actually get rid of them, but he's so busy with his new cars that I don't think he'll miss them. I also want to instill empathy in Owen and get him involved in giving away toys to those less fortunate, but I'm not sure he's quite old enough to understand that. Nor do I *want* him to understand that yet; I want to keep him in his happy little world forever!
Thursday, January 5, 2012
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.
I am thankful my brother and his family live only a long car's drive away (as opposed to a plane ride).
I am thankful Sophie is such a smiley baby.
I am thankful that Owen and Sophie are starting to interact more.
I am thankful for grandparents.
I am thankful for friendship.
I am thankful for our beautiful state and the ability to get out of town every once in a while.
I am thankful for pumpkin pie (and apple pie, and pound cake, and chocolate fudge, and...).
I am thankful for beautiful weather.
I am thankful for the simple joys of childhood.
Above all I am thankful for good health, for my immediate and extended family.
I am thankful for a child's curiosity.
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| From O So November 2011 |
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| From O So November 2011 |
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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.
The air pillow at Vertuccio Farms was a ton of fun because the parents were able to join in!
On our way to Freestone Park for the Halloween Festival
Sophie the ladybug
The ladybug and Lightening McQueen on Halloween night
It's finally been cool enough for Sophie to wear her fun sweater! Made for her by our good friend Jason's mother.
Earlier in the month in Grandma and Grandpa's boat at Saguaro Lake
Captain Sophie!
Sophie and Toolman
Look at me, I'm a star!
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!
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| From O So October 2011 |
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| From O So October 2011 |
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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!!
Owen playing dressup.
Sophie and Toolman
Look at those beautiful eyelashes!
Owen dancing and singing "Life is a Highway"
Sophie in her room.
Owen's birthday card for Mommy
Welcome to My World day at Owen's school
This was Owen's face during most of the game.
Grandpa, Owen, Cousin Ben, and Uncle Ken
Sophie and Aunt Katie
Sophie pushed herself up to a stand!
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!!
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| From O So September 2011 |
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| From O So September 2011 |
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| From O So September 2011 |
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| From O So September 2011 |
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| From O So September 2011 |
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| From O So September 2011 |
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| From O So September 2011 |
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| From O So September 2011 |
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| From O So September 2011 |
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| From O So October 2011 |
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| From O So September 2011 |
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| From O So September 2011 |
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| From O So October 2011 |
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?
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.
I guess it's time to re-baby proof the house!
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.
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| 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.
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.
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/.
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/.
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