Hospital Ups and Downs

As I write this, Sophie is peacefully sleeping during her 6th night in the hospital.  Last Tuesday, she stayed home from school (it would have been her second week) because of a fever. On Wednesday afternoon, we went to the PCH UrgentCare, and she was diagnosed with a urinary tract infection (UTI). On Thursday, I took her to the ER at the request of her doctor to get some labs done.  She had had a fever on and off for several days and I noticed a change in the color of her stool (a sign her liver is not draining properly).  Turns out she had a urinary tract infection (UTI) and ascending cholangitis (infection of the bile ducts coming out of the liver).

The first night in the hospital was really hard for several reasons.  She couldn't eat or drink until the doctors figured out the course of tests and treatment (she did get IV fluids), which, of course, takes forever.  This pretty much meant that I couldn't eat or drink until she was admitted as that would have made Sophie want food or drink even more.  Add to that the emotion of thinking that your daughter is going to need a liver transplant. Doctors did tell me that she had elevated bilirubin levels, which was a key marker for her biliary atresia she had when she was born. To recap, the Kasai Procedure as done is completely successful about third of the time, works for a while a third of the time, and fails a third of the time. In the last two instances, the treatment is a liver transplant.  My thought on Thursday night was the elevated levels meant that she was  no longer in that first group, and might soon be facing another major surgery.

Luckily I was distracted by trying to keep Sophie happy.  I can't fully blame the doctors, but no one gave me a really good explanation of what the issue was until we saw her regular GI, Dr. Ursea (she's awesome!), the next morning.  I thought things were worse than they really were.  I didn't realize that the drainage issues could be temporary.  It turns out she just needed some IV antibiotics. By Friday, she was acting normally.

The first rule of being in the hospital is to never expect to go home when they say you might go home (especially the first date they give you), which we learned when Keith was in the hospital last year for his rhabo.    They said they wanted to keep her on the antibiotics for 5 days, at which point she would probably go home.  Luckily I knew this rule already, so I wasn't heart broken when they said the bacteria that was in her urine was resistant to the antibiotic they had been given her (even though clinically she was doing much better) and that she would need to stay longer to get a new antibiotic.  (Zosyn was the original medicine given; she's getting Meropenem now, and will go home with Bactrim, for all you doctors/nurses playing at home.)

The second rule of being in the hospital is that all other rules pretty much go out the window.  I don't feel guilty about how much TV we watch, or for having a dessert with almost every meal.  Now that Sophie is feeling better and is off the IV fluids, life at the hospital isn't all bad.  We're only confined to the room for an hour twice a day for her antibiotics and for sleep. Someone else cleans and does the cooking.  It's something like 110F outside, but inside we're wearing pants and socks.  We've finally gotten into video conferencing with the new Google Hangouts (we never did get into Skype), and do a few calls a day that way. We're actually getting a decent amount of sleep, and thanks to Grandma/Nana/Daddy, I've been able to get away and get some exercise, and keep up on my work.  Sophie likes the attention from all the doctors and nurses, and loves going for walks in the hallways, saying "Hhhiiii!!" to just about everyone who walks by (I joke that she thinks she's the official greeter of the hospital). We're at Phoenix Children's Hospital, a really awesome hospital.  There is a playroom on our floor with lots of stuff for Sophie to do (and a really awesome playroom downstairs for the older kids), and tons of volunteers who do everything from give you books and coffee to bring therapy dogs to your room.  They even have a library (open to the public, fyi) about children's health issues.  And cool decor.

The hardest part of being in the hospital is not being able to spend more time with Owen.  I have spent some time with him, but every time he's come here for dinner (not your idyllic family dinner), he cries "Mommy!!" as he leaves.  I know he's fine by the time he gets out to the car, but it really tugs at my heart strings.

The good news is that we are likely to all be home for dinner tomorrow night (Wednesday).  Tomorrow we get the final results of Sophie's latest urine culture, and if it's negative for bacteria, we can go home. I'm looking forward to it, but don't worry, I haven't forgotten Rule # 1.

P.S.  I realize I'm really behind on pictures/blog entries.  Stay tuned.

Anything Owen can do, I can do also

If I had written this post about a month ago, it would have been titled "Daddy's Little Princess".  Sophie went through a phase where everything was "Daddy".  No, I don't want Mommy to get me dressed, I want Daddy.  I want ice, but I want Daddy to get it.  I want Daddy to change my diaper.  (All of that was signed, not spoken; if you're wondering, the sign for Daddy is an open hand with the thumb hitting the forehead.)  It used to be that if I was in the house, only I could put Sophie to bed (if she saw me leave the house, then Daddy could do it).  I am generally OK with all of this, but it is sometimes inconvenient.

Well, you will have noticed by now that I didn't name this post Daddy's Little Princess.  Sophie still prefers Daddy a lot, but it seems like now she tends to ask for whoever is not currently helping her.  No, I don't want you, I want *that* person.  And Sophie can be adamant; she's a screamer, and she'll fight physically against you too (like if you're trying to dress her, she can make it very difficult to do so).  Her therapists say she's exploring what control she can put on her environment.  So we pick our battles.

So she's moved on (at least a little) from the everything "Daddy" stage to the "I want to do everything that Owen does" stage.  If Owen asks for a fork for his strawberries, Sophie wants one too.  If we talk about Owen going to the bathroom, Sophie wants to sit on the potty too (I don't think she has any sense of going pee/poop, so she's not ready for potty training, she just likes to copy us).  Tonight Owen asked for the ice pack because he hurt his elbow.  Sophie then pretended she hurt her finger so she could also have an ice pack!  This keeps us on our toes; she'll often point to herself with a longing in her eyes like she wants something, and we have to figure out what we were talking about. 

It's not just Owen that Sophie wants to copy.  Keith and I recently found her trying to get into the garage with her purse in one hand and her toy keys in the other.  It's also partly her love of routines.  When she sees me getting dinner ready, she goes to the silverware drawer, gets a fork and puts it on the table; then repeats it for all four of us.  When we announce that dinner is ready, she stops what she is doing, heads to the bathroom, and waits on the stool for one of us to help her wash her hands. 

We also have to watch what we say.  Sophie was recently tested by her Speech therapist and was graded at her age level (2.5 years) for Receptive Communication (but only 18 months for Expressive, since she only has a few spoken words and 20 or so signs).  We had given up spelling things with Owen because he can read now, but I find myself spelling things like p-o-p-s-i-c-l-e around Sophie, otherwise she will motion "I want one!!"


In the last 6 months Sophie has definitely moved from the baby stage (crawling, not communicating well) to the toddler stage (walking everywhere and stating preferences).  Sophie will even start preschool in the Fall (the public schools offer a preschool for kids developmentally behind).  I might start her at Owen's school sooner than that because she is showing signs that she wants the socialization.  It's a little sad to leave the baby stage (we aren't planning on having another child), but we are also proud at Sophie's accomplishments.  And Sophie's new found understanding of things are leading to a child-like wonder at more things.  A stranger recently commented on Sophie's enjoyment in riding an elevator that kids find amusement is such simple things.  The woman said it in a way that made me think she thought that was a bad thing.  I felt sorry for her at that comment.  I do sometimes worry about what Sophie will be like when she gets old enough that her disabilities and "simpleness" are no longer cute.  But for now I feel blessed that I have two kids that can show me what is truly worth enjoying!

Wheeeeeee!!

Happy Birthday Owen!

This past Sunday was Owen's 5th birthday.  Owen was originally going to have a "Cars" themed party, but Keith, getting tired of Owen's infatuation with Cars, convinced him to change it to a "chess" theme.  I thought for sure the chess theme wouldn't last (he's only been introduced to the game in November), but to my surprise, and a little to my chagrin since I had already started planning some Cars details, it stayed.  

I love themes, and, given a theme, will gladly go overboard with it.  But I wasn't sure what to do with a chess theme until I looked around online for ideas.  Since I do tend to go overboard, I made myself promise to keep things somewhat simple, and for the most part I did (well, kind of). We had hats for the kids to decorate (kings, queens, rooks, bishops, and knights), some play swords (1/2" PVC pipe shoved into a pool noodle) for the knights, a punching bag alligator to serve as the dragon, some chessboard table clothes, and 2 chess boards. Oh, and dark/light appetizers, some of which guests didn't eat because it looked too fancy.  I did allow myself one splurge - the cupcakes.  I went online to find some really good sounding recipes for vanilla and chocolate cupcakes/frosting, and we bought a mold which I used to make chocolate truffle chess pieces. Owen said he wanted jello at his birthday, so we added some of that to the vanilla cupcakes.  It took a lot of time and effort to make 64 cupcakes, but it was worth it!  It's a good thing I gave up chocolate for Lent (I did allow myself one cupcake and one chess piece), or else I would have gorged myself on the leftovers. 

From Owen's 5th Birthday Party

We've never spent money on birthday parties (like hiring entertainment), but we decided there was going to be enough kids at the party that we wanted to make sure they had something to do, so we rented a bouncy house.  One reason I wanted to rent one instead of borrowing a friend's was so the adults could go in.  If you didn't already know it, BOUNCY HOUSES ARE SO MUCH FUN.  And good exercise.  Owen had a lot of fun in it, and Sophie *loved* it!  I actually went in the bouncy house by myself after the party and was a little sore the next day.  A few days before the party Keith asked at what age do the parents stop coming to the party; I'm not sure what age that is, but I'm glad we're not there yet.  Our kids' circle of friends (outside of school) is for now primarily our friends' kids, so we enjoy the parties as much (if not more) than they do.  

For past birthday parties we stated on the invitation to not bring any toy gifts; our kids already have a lot of toys and this was one way to control what they got. For Owen's third birthday, we had a art/creativity/music/book theme for gifts, and last year Owen had a costume party where we told them to bring something to add to our dress up bin (the best idea EVER.)   We might be able to get away with that one more time for Sophie's birthday, but Owen is at the age where he cares a lot about the presents.  

Despite our attempts at telling Owen that he could open his gifts from his friends *after* the party, he started opening them himself *during* the party when we weren't looking. His favorite gifts this year so far are the Scrambled States of America game and a set of Legos from the Lego Creator Series.    I'm not surprised he likes the States game given his history of liking the United States floor puzzle and the Scrambled States of America book. Owen's Aunt Katie was a little concerned how much he'd like the game since it was something Keith put on his wishlist a while ago and that he hadn't been clamoring for. But after coming up with some modified rules, Owen ended up playing at least 7 games in the first few days.

I am a little surprised at how much he likes the Lego set. A school friend gave him a play-doh set he got for Christmas, so after the party, Keith took Owen to Target to exchange it. Owen likes to go to Target often to look at the Cars, even though their selection is very limited. The week before his birthday, however, he wanted to go to the Lego aisle to look at a Duplo set that matched up with two others Sophie got for Christmas. After receiving that set from Sophie for his birthday, he told Keith he didn't need to go to the Lego aisle anymore. After some time looking at the Cars, Keith was able to convince him to head back over to look at the Legos. After discussing three different sets, Owen picked the one with a car, a plane and a robot.  He had a small Cars Lego set, but this was his first large set (if you consider 235 pieces a large lego set). The small pieces are not easy to work with, so I didn't think he would have the patience for it.  But Owen often surprises me with his ability to concentrate (when he wants to).  In five days, he did all three constructions, starting off with (of course) the car when he got home. He did most of the actual assembly himself (at least 85%), and never really got frustrated, even when he struggled to get a piece in. Keith provided most of the support, helping him find pieces and laying them out (for the sake of efficiency) and getting him to focus on following the instructions, which Owen found harder to do as the construction neared completion, as it became harder to see where the pieces went.  I foresee a lot more Lego building in his future! Assuming we can afford it--they aren't cheap!

Keith says I should post less about the party and more about my feelings about Owen turning five.  Truth is I don't really feel mushy about it.  I don't feel sadness about my baby boy growing up too fast.  I'm not sure why not.  Maybe it's because he still comes into our bed at night.  Maybe it's because he still asks me to kiss his boo boos.  Maybe I've been so busy planning the party that I haven't had time for it to hit me.  Maybe it's because he's not the youngest.  Or maybe it's because I've been too busy enjoying seeing him growing: learning about outer space; showing off his moves at dance class; learning to read; taking cooking class; building things; experiencing a hail storm; dressing up as Merida and pretending to shoot arrows.  Whatever it is, I love him with all my being and I look forward to growing along with him!

(But don't worry; I'll probably be a mess of tears when we drop him off at Kindergarten next Fall!)

I have a dream

Owen and I stopped in at the library after school Thursday to pick up a couple books I had on reserve. He wanted to get more for him, but I told him he could only get two since he and Sophie already had 17 books checked out. He wanted the two to be Disney easy readers (Winnie the Pooh, Cars, Toy Story, etc), but I told him they had to non-franchise books, to which he begrudgingly agreed.

After picking up my books, we passed a display that had Martin's Big Words on it.

Having  read good reviews of it, I added it to our stack. Owen protested, saying he didn't want it to be one of his two books, so I told him it was for me. He picked out two random books, and I saw one for Sophie and then we were on our way home.

After dinner, I asked to read it, but he protested, saying he didn't like the book because he had never read it. But I continued, and by the second page, he was listening. By the fourth, he was curled up next to me. When it got to Rosa Parks, he didn't understand why she was arrested. Nor could he understand later, when "they were jailed and beaten and murdered." I looked at his face, and he looked upset and distraught, but then Martin said "Love is the key to the problems of the world."

He had that same look on the penultimate page in which Martin was shot and killed. After finishing, I asked him if he wanted to hear Martin speak, and he did. We sat down at the table and watched Martin speak. He kept on pausing it in the beginning. I had to convince him to keep listening and watching. Sophie, meanwhile, kept seeing the clapping and applause and clapped herself.

After it was over, we had a talk about differences between people. I focused on getting him to understand the line about not judging people by the color of their skins, but by the content of their character. He wanted to go back to the book to where Rosa Parks was arrested because that was the part he "liked" best. I couldn't get him to explain why, but based on his questions, it seemed to be the event that made the least sense--a woman being arrested because she was sitting down. On Friday morning, we read it again. Again he wanted to read/look at the bus pages and became downcast when Martin was shot.  My uncles were in town for the gathering we had for my dad, and my Uncle John, a lifelong educator, agreed with my theory, stating that it was because of the clear unfairness of the situation--something children can understand easily.

We probably could have led the conversation (or let him lead it) a little better. It was spur of the moment. We haven't gotten too deep with social issues or current events with Owen, but I do try to make an effort to expose him to some other perspectives/cultures (though it sh/could be more). We've had other books that have caused some emotion (generally on our part), but this is first book where I've seen this type of disappointment and sadness from Owen while reading a book. I guess the next step after recognizing unfairness is to discuss what actions to take to correct the situation.  I guess I have discussion points for the next reading.

Talking to Toolman

December 28, 2012

On Tuesday, January 2 around noon, my dad, aka Toolman, died. 

While my dad did not have good health, this was unexpected. He had his annual pneumonia-type symptoms in mid-December, but there was nothing that seemed out of the ordinary, based on his medical history. We still don’t have a cause of death, but this post isn’t meant to deal with that, but how we dealt with it with the two lights of his life, Owen and Sophie. 

From Christmas day:

Toolman had a special relationship with both. Sophie and my dad would whisper into each other’s ear, something that Sophie only did with my father. He’d nuzzle up to her ear and whisper/blow lightly, and she would light up. She didn’t let out big laughs or have a huge grin—just a happy, content smile that she was sharing a special moment with my dad. Then she would do the same to him.

Owen’s relationship was deeper, being older, sturdier and so on. When he got into Cars he assigned all of us favorites, and Toolman was of course Mater, a rusty old tow truck. Whenever Owen came over, my dad would “fix” Owen’s shirt, pulling the back bottom up over his head. They’d go swimming with Wally (an inflatable dinosaur). During football season, there was our “Go Giants!” catchphrase, and when he was wearing his "72" shirt, Owen would tell my dad how to pronounce Osi Umenyiora. Owen would give my dad high fives so hard, my dad's hand would stick to his head, and only Owen prying his arm away could get it off. My dad was his supplier of hotdogs and egg noodles, pancakes and corn muffins, Arby's and french fries.

But the biggest connection was that Toolman was the toughest guy Owen knew.  Just a few days ago, we were explaining to Owen (again) that he always needed to be gentle with Sophie—she never reacts well when Owen is even slightly rough with her. So we made a gentle-rough scale, with Sophie at the bottom (1), then Nana (4), Grandma (5), Joanne and Grandpa (15), me (50) and Toolman (80). I started Owen on the tackle hugs and he’d do that to my dad while he was sitting in his chair. Owen would come running at his top running speed and jump into the chair, and it wouldn’t phase Toolman at all.

We decided my mom would stay at our house Wednesday night, and Joanne was insistent we have a plan to tell Owen the news when he got home. We reviewed info on the topic (it seems like there’s one source that then underwrites all other advice pieces), and went with the direct approach—that Toolman died and we wouldn’t see him anymore.  Joanne brought him home from school, and told him Nana was at the house, and he asked Joanne if Toolman was there too. When he came in, he was excited to have Nana there. We told him that we had some sad news and had him sit.  We explained to Owen that Tooman died and went to heaven and told him that if he had any questions we would answer them.  He saw that we were downcast, and his expression matched ours. We asked him if he understood what we had said, and he said he did. He didn’t have any questions at that time, and he soon bounded off to get his cars and talk about the Lemon cars he wanted to get for his birthday (a normal reaction according to what we had read).

That night Joanne put Owen to bed, and he said he had a question.  He asked that if Toolman was in heaven, who would be Daddy’s Dad.  Joanne told him Toolman will always be Daddy’s Dad, and also asked “do you know how Toolman and Nana’s parents were already in heaven?”  Owen started to ask “So does that mean that Toolman…?” but he seemed not to know how to finish the question.  Joanne told him “Yes, Toolman is now with his Mommy and Daddy.” But that wasn’t all:

After I finished reading to Owen, I turned out the light and told him a story (as usual).  When I was finished, he, of course, asked for another story.  I told him no more stories, but if he wanted to say a prayer, we could.  I told him that now that Toolman was in heaven we could pray to him.  He asked “I thought only God could hear our prayers?”.  I said we could ask God to tell Toolman something for us.  I asked him what would you tell Toolman?  He then whispered “I love you”.   

The next morning, he picked out some older socks that he doesn’t wear often anymore (they’re small) that had footballs on them (his USA puzzle has a football on the state of Ohio, and even though Owen knows my parents are from New York, he referred to Ohio as Toolman’s favorite state because of the football on it). I asked him if he picked them out randomly or on purpose. He said twice “I picked them.” 

I think he understands. 

Owen demonstrating the "fixed" shirt

Owen's First football game, Nov 20, 2012

Thanksgiving 2012

September 2012

Super Bowl Sunday 2012

February 2012

September 2011

May 2011

April 2011

Christmas 2010

Ringing in the new year

Owen rung in the new year by ringing his graduation bell at his swim class. All done with survival, now it's on to actual swimming!  And here he is on the medal stand:

He did that by completing his airplanes (floating on his back and no kicking), turning to superman (face down in the water for 3 seconds, kicking allowed, hands together over the head), then flagpoles (on his side and doing a stroke) on the way back to airplane. He was fortunate to have his class, which normally has two other boys, all to himself, so he had a lot of instructor time. He did the above sequence the width of the pool, then did length of the pool, and after a short rest, the deck manager came to watch him do it.  It took approximately 10 minutes but he did it.

That's just the simple version though. At a class in early December, he made it across the pool in his swimsuit, but to graduate, he had to do it again with pajamas (to simulate clothes). The instructor cautioned that it usually took kids a few sessions to adjust to the different sensation of the clothes. Still, on his first week in pajamas, Owen made it the width of the pool, so a manager came in watch him do the length.

And... nothing. His legs constantly drifted apart on his airplanes and then he'd kick, which ended up moving him the wrong direction. So that test got cut short.  The following week, was a similar sequence: good across the width, technique breakdowns on the length. And then we missed a week since the facility was closed for Christmas.

Since the switch to swim class in PJs, we've built up graduating and what he needed to improve upon: keeping his legs together in airplane and not kicking, staying in superman for a long three seconds (he turns over pretty quick--a self defense mechanism, I'm sure, since it's dangerous to have your face submerged in water, and Owen is very big on self preservation), and scooping better in flagpole to get some movement. On the way to class last night, we talked about those three things, and concentrating on them the most. Of course Owen was concerned that then he wouldn't do the other things right if he was focused on those things. He was very excited to graduate, though, and was confident he would. To help the cause, I switched him from lightweight, but loose pants, to too small tight fitted pajamas to cut down on what I thought might be some sensation of drift with his legs.

The class went along as normal, decent across the width, making it the length, then having a short rest for the deck manager to come in and watch.  I was hopeful, but still had doubts. He was doing a better job of staying in his supermans longer, but it was still inconsistent; his legs drifted in airplane, but he'd get them together to do make the turn. And the boy was tired--he didn't have a lot of rest in class, and he's only had one decent nap in the past two weeks. He was breathing pretty hard before the final length started. The instructor moved far away from him (the deck manager was on the pool deck).  I started the recording above, but stopped as it looked like it was either going to take a long time, or he was going to be stopped again.

The benefit to having the class to himself was that they could give him as much time as he needed since there were no other kids to work with. He had a period half way in which he didn't move much, then made it to three quarters at a decent pace. Then he started to slow down. I gave him some encouraging words, then moved to the end of the pool. 80%, then 90% percent, then another pause. The wake from the end of the pool messed him up a bit. Three different times his head was almost next to the deck, but instead of turning and grabbing the wall, he  pushed away from the wall, so what could have been 3 more cycles ended up being 9. He started to get visibly upset at this point, but the instructor told him to relax and take his time, and he soon made it!

Coming out of the pool, Owen wasn't excited. He was very tired, cold, and probably didn't enjoy the experience all that much. They had him do one more jump test (jump into the pool, turnaround in the water, and grab the wall), which he did well enough (he has had the tendency to turn in the air). So then he rang the bell, signifying his graduation. He then said he wanted to skip the play noodles and go home. He was flustered, so I picked him up and carried him to the changing room to take a shower (in a not warm shower area, waiting too long for the water to get warm), further upsetting him. I managed to coax a minor smile out of him on the medal stand, but he wasn't really in a great mood for the rest of the evening. But he did graduate.

What's left out of that perhaps-too-long narrative is my reaction to watching it happen. Joanne posted on Sophie starting to walk last time. What made that so special was that it felt like more than a milestone for Sophie, it was a true accomplishment. She's not quite 2 1/2, and we knew she'd walk some day, but still, with all she's been through and has to deal with, we couldn't be so certain that time was really near. If you watch the video, you can see Joanne crying (I did as well, though not in the recording).

And I cried a bit last night also. And it wasn't that him graduating was a big accomplishment, but his perseverance in doing so was. Owen's generally been a perfectionist in that if something is not right, it bothers him and then he gets upset and gives up/looks for help. When he tries to do something that doesn't go right, he struggles to want to try, try again. But last night he did. Sure, the situation was set up to make him  persevere, but as a said, he got visible flustered near the end, but he was able regain enough composure to finish. I told him at least a dozen times that I was proud of him, proud of his effort, and proud of him accomplishing a goal he had set. He wanted to graduate last night. And he did.