Trip to Holland

For my birthday last September, Owen (and Daddy) made me the following card, which of course, made me cry (the happy kind):

From O So September 2011

So it was no surprise to hear that Owen was working on another card for Mother's Day.  Come MD morning, he wasn't finished with it, so Daddy and Owen were working on it while I was doing various things around the house.  I could hear a few of the things they were writing on it, so I was wondering if I was going to get emotional when I read it.  I think I held myself together until I read # 6:

If you can't read it, #6 says "Appreciating our trip to Holland".  I totally lost it at that point. 

If you're wondering how you missed my post and pictures from our trip to Holland, don't worry, we haven't gone anywhere.  Keith is referring to this story, which a friend of ours sent us when Sophie received her diagnosis in August. First, I was surprised that Keith remembered the story.  Second, I appreciated the fact that he noticed my acceptance of the revised "trip" that our lives have become. 

And I have come to a greater acceptance.  When I first read the Holland story I didn't think it was the best analogy.  I think my biggest disagreement with it was that it didn't really admit that taking care of a special needs child was not just different - it was harder.  There isn't just developmental issues to deal with; there are medical issues that can cause suffering.  We have been incredibly lucky that Sophie has been healthy and I thank God often for that.  But I now realize that along with the difficulties there are blessings.  You appreciate the little things.  You learn things you would never have learned.  As the story mentions, you meet new people you would never have met otherwise.  On Monday Sophie and I went to a BBQ at our church for families with special needs children.  I was struck by how different some of the people in the group are.  I wasn't sure if I would fit in.  But then you start talking and you realize how much you have in common.  There is an instant bond when you meet someone with shared experiences.  I feel that bond with all mothers/parents to a certain extent, but especially with those with special needs kids. 

Did I say that I held it together until #6?  Ok, I probably lied.  #4 probably holds the most value for me, because it is the truest of them all. 

Happy late Mother's Day!

I've been remiss in posting lately, so here are some pictures to get you (almost) caught up.

Owen and the Bean Stalk

This is a mashup of monsters and green beans. You've been warned.

Coming home from school two weeks ago, Owen announced that he wanted to break his green bean eating record. He wanted to confirm the number, and I told him it was 38.

"So I have to eat 39?"
"At least"
"Just 39. I'll do 40 next time."

Got to admire his awareness of not overextending himself.

With our vegetable set, we went with pasta as the side dish. I suggested to him that it might be best to start with green beans, and to use the pasta as a break.  But if pasta is on the plate, he eats it first. While I'd prefer he engage in circle eating, he has learned to eat all of one thing before moving on to the next at school, as that is their control mechanism to keep them on track. Fortunately, I only gave him a small amount of rotini before he got started on a record setting performance*. Here's the conclusion. If you're not a grandparent, I am fairly certain it is a waste of four minutes, so don't feel obligated to watch:

*although he set a record with 39, topping his record of 38,  the 36 he ate just before the 38 is still the most impressive performance, based on size of the green beans in that sitting.  And really this green bean thing may not be all that impressive from a quantity amount. I really should weigh it. It's not uncommon for him to eat gobs of fruit for dessert, such as a recent small bowl of grapes, tangelo, banana effort, or a big bowl of tropical fruit (strawberry, papaya, mango, pineapple).

All this makes other people think he's a good eater. But really he's just OK there. What he has is a good diet. I do worry about being too restrictive in that he's not getting the opportunity to figure out for himself a proper balance, but maybe four year olds weren't meant to do that. I've tried to lighten up a little when he gets things that he doesn't get in the house. (Really Mom, I am trying!). Last Sunday, we went to a Derby party in which we were served the traditional Derby Pie, following the hosts' 7 year old and 4 year old chanting "we want pie, we want pie..."  On Monday, Owen asked if I liked their "pie song." So it goes...

And in completely unrelated news but relevant due to post title, Owen really does not like my favorite kids book to read--The Monster at the End of this Book. I vaguely remembered it from when I was a kid, figured out what book it was and purchased maybe 2 years ago. The initial readings went OK, but Owen didn't really comprehend everything, and I wasn't quite pushing the boundaries of its performance. But on last year's trip to San Diego, I perhaps embellished too much in Grover's pleading the reader  not to turn the page, and Owen thought I was mad at him and started crying. Ever since then, he's been afraid of it.   I try every few months, but to no avail.

On recent attempts, his reasons for not wanting to read have become more... rational, if you will: we NEED to listen to Grover. Despite Owen knowing the monster at the end of the book is in fact Grover, he absolutely does not want me to turn any pages. Last week, Joanne recorded part of this attempt (please excuse the very questionable parenting going on as well as my hair):

Last Monday (May 7), Owen brought the book to me and asked if it was my favorite book (I do think it's great and I'm hoping that if I like it that much, he'll let me read it again) and I said yes, it is my favorite book to read to him. We then negotiated terms of a prospective reading, and that was to not read it, but to just turn the pages. Alas, that lasted two turns and then I had to keep the book away from him as I turned the pages.  We got the end and he completely relaxed and let me read the last page. He then said "Daddy, you should really listen to Grover."    

What a difference a year makes

Editor's note:  I started this about three weeks ago, but didn't quite finish, then came the bout of rhabdo.

As you might recall, Owen's bedtime routine/sleep habits after Sophie came home left something to be desired. It all started with quite possibly our most horrid parenting decision--moving Owen to a regular mattress within days of Sophie coming home. Stupid. Looking back, I can't think of any reason we did that, and I'm pretty sure I advocated for it. So this led to months of Owen not falling asleep by himself--him needed us by his side, him getting up to find us, etc., as we could not bring ourselves to lock him in his room.

Right around the time he turned 3, he really started to improve, with some help from the Good-Nite Light (a moon night light that changes into a sun when it's time to get up and out of the room) and some rewards (Cars of course) for staying in bed all night. It still wasn't the fastest bedtime routine, but we were fairly certain that when we left the room, he would stay there. That went well for about 3 months, then we went to San Diego for a week in June and he spent that week between us in a King bed. After returning home, there was some diminished sleep skills, but nothing that bad. That came at the end of August after Joanne took the kids up to Pinetop with her parents at the end of August. After that we were almost back to where we were 7 months earlier, but worse. Not only did we need to linger outside his room, but then he started to wake up every 2 hours or so after completing a full round of his sleep cycle. The first time wasn't that bad, as we were still up and he'd go the bathroom (I don't recall any accidents he had in bed after switching to underwear at night). The second time, I'd generally still be up or at least awake. But the third time... the third time he'd get into our bed and most times stay there the rest of the night.

His pattern was very regular. The first time he'd be agitated and crying until one of us got to him. The second time, a little loud but not crying. The third time, silent and stealthy and he'd be between us in bed. The Good Nite Lite, which worked well for a few months, still worked... kind of. He'd ask us, while laying in our bed if the sun was up. What's odd is that he had learned to stay in his room while Sophie was still in our room, but when she finally moved to her own room after the Pinetop trip, that's when Owen really regressed.

Joanne and I talked about the family bed, but didn't really look into any studies about it, or negative consequences of what he was doing (coming into our room) or not doing (self soothing, sleeping independently). I read justifications of the family bed--that humans are the only mammals that don't sleep as families, and what not, but I think we both felt like we shouldn't do that because you're not supposed to do that.

It came to the point that we were both frustrated by the middle of the night wakeups, but we were not really opposed to the early morning snuggling. Right after Christmas, Owen began sleeping on the floor in his room in his "tent" (a sheet stretched between his dresser and chairs near his bed. That improved the falling asleep routine for a few weeks, but I ended up going into his room and sleeping on the floor as well after he woke up. When we moved him back to his bed, we really started talking to him about how it was important for him to stay in his room all night. We didn't have any good 3 going on 4 year old justifications, but Owen was agreeable to it, but not until he turned 4. Joanne and I were skeptical he meant it. Owen's star system was 10 stars meant he got a car. A year ago he got a car for staying in bed all night and we weaned down the reward. To induce a good start when he turned four, we offered him the same deal. The first night, if he stayed in bed he would get a car. We also started experimenting with an music alarm in addition to the good night lite. And we did say he was allowed to get up once to go to the bathroom.

Owen turned four less than three weeks ago. The Sunday after his birthday... he stayed in bed all night! He was proud. We were thrilled. I was optimistic. Joanne wasn't so sure it would be that easy.

And it wasn't. Kind of. The next two night he got up multiple times but... BUT... he never came into our room. That second nigh he kept getting up to go potty (three times). He also wanted to watch the clock, waiting for the music to start, so I sat with him in his room for about an hour until the music started. The third, a little more of the same, and I think that was the night he opened our door, but talked to us from the doorway. We talked to him more about he was improving but had to do a little more, and that it would be easier if he stayed in bed and slept, as time would go faster.

Since the fourth night, though, he's been very good for the most part. He's gotten cars the last two weekends for the good job he's done staying in bed. We've been able to leave his room more easily at night, he's gotten over waking up every two hours (he has had I think two nights of waking up at 2:30 or so for the bathroom break), and he responds well to the music and sunrise. This past weekend, he got up about 20 minutes early, opened our door (and didn't come in), and I asked him if the sun was up. He looked into his room, saw that it wasn't and went back in. SUCCESS!

As I finish this post now three weeks later, Owen's still doing great at this. With league and some other night events, he's getting to bed later than we'd like a few times a week, but as far as we can tell he's sleeping through and asleep until at least 6:30. This has produced what seems like a not insignificant increase in energy, which is mostly a positive.

Owen getting Lewis Hamilton almost 3 weeks ago (excuse my early morning grogginess):

While this was the biggest deal we made about things he would start doing, it wasn't the only thing. Things a four year old Owen does willingly that a three year old Owen resisted:

• Drinking a cup without a top (young Owen would do up to 20 sips then get the top; old Owen doesn't ask for a top, but also doesn't drink as much)
• More effort in getting his shirts on by himself (I blame myself for going back and forth between headfirst and arms first)
• Wiping after #2 (skill is still not proficient)
• Flossing (to be fair, this was not introduced as a three year old)
• Ignore us when we repeatedly ask him a question (more proof of his precocity--he's at least 10 years ahead of schedule
• Eating his cereal all by himself.
• Finally started to pedal on his own for a modest distance oh his trike (this one we hadn't really consistently practiced, and we have a trike that while very sturdy and high quality, is simply to heavy and cumbersome for Owen)

Happy 4th Birthday Owen!

Saturday was Owen's 4th Birthday.  We had a party at our house, which meant that the last few weeks were spent planning/cleaning/buying for that.  I was so busy with preparations that the normal nostalgia didn't hit me until Friday night when Keith played a song that he played while I was pregnant with Owen ("Miracle" by the Foo Fighters).  I had forgotten that this wasn't just a day to have a party; it was the day my water broke 6 weeks before it was supposed to.  It was the day they induced me into labor.  It was the day Keith kept saying "You're almost there!" 100 times in the 45 minutes that I pushed.  It was the day that at 6:56pm our lives were changed forever.  And now that 5lb 12oz baby is 30+lbs; he's walking, talking, reading (some), doing math, learning how to swim, enjoying gymnastics, organizing his cars, and making us laugh and smile more than ever.

Owen woke up at 5:30am, so excited he couldn't go back to sleep.  We (tried to) spread out his gift openings to every 30-45 minutes that morning.  He kept dancing around, trying to set the timer so he knew how long until the next gift (we've been using the timer a lot lately to help with his sense of time).  We once again had too many people over for his party, so since he was already tired to begin with, it was a bit overwhelming for him.  He was completely wiped out by the time everyone left, and fell asleep before Keith got to the end of one book.  But he (and everyone) seemed to have a good time overall, so I would call it a success.  And our house is almost cleaned up from the party.  Which means it's actually cleaner than it's normal state.  :-)

We are taking advantage of Owen's birthday by making several "Now that you're four..." rules.  No more sleeping in our bed; milk is now drunk from a cup without a top; he puts his shirts on by himself; we now floss his teeth.  So far that trick has worked better than I thought it would.  I think he even made one up himself.  He is also trying to take advantage by saying he wants four of things (scenes on the computer, etc.) when before he would say three ("Because I'm three!")

Pictures from the party (it was a dress-up party, hence the costumes):
 

I'd say I haven't written in such a long time because we've been so busy, but I know that's a lousy excuse. And we haven't been anymore busy than we usually are. In January we took a trip to Santa Monica for a beach Ultimate Frisbee tournament. We created the team by inviting a bunch of parents, and then some "babysitters" to fill in the roster. We were quite a sight on the sidelines with 10 kids and several tents. We were lucky enough to have Grandma and Grandpa come along as well. We decided to forgo hotels this year and rented some beach houses; one of our best decisions ever. We were in one of the houses with our good friends Megan, Bryan, Finn & Maya.  We had a ton of fun!

Pictures from the trip, mainly in the beach house:


 I had the fun of breaking my nose playing frisbee in February. It was kind of funny to see it crooked. Surgery and a few not-so-fun days later, and the nose is looking good (well, as good as it did before)! Sophie was in the hospital overnight a couple weeks ago after her g-tube wouldn't stop bleeding after the doctor burned off some granulation tissue. Her blood clotting times were tested as too high. She is now on a Vitamin K prescription for it, and feeling good. Spending a night in the hospital with Sophie is never fun, but has so far always been an interesting experience.

 Sophie has changed a lot in the last couple of months. She is now cruising and getting stronger. She's no where close to walking, but I can see her progressing to that, perhaps this summer. She is not talking, but is communicating more, pointing, makings sounds, and using sign language (so far only "more"). She is showing more preferences for certain books and certain foods. She is still a very social baby, giving smiles to anyone who gives her attention. She's becoming more of a toddler, so I guess I can't call her "baby" too much longer. But with Owen now so grown up, I'm going to hold on to "baby" as long as I can!

Other pictures from January and February:

Happy New Year!

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!
 

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

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!