If Brody had a blog

If Brody had a blog, this is what he would write:

Mommy asks me two questions every day. She asks me, "Are you a silly wiggle muffin?" whenever I make her laugh, and "Are you the cutest boy ever?" when she stands me up after dressing me in the morning. I don't know why she asks me over and over. I don't think she knows whyeither. I always smile. I don't think I mind her asking me those questions.

Daddy asks me "Who's the best son ever? Is it Brody?" I would have to say my answer to that is, "YES."

When the three of us are in the car together, I make my mommy and daddy sing to me. Together. Daddy doesn't know the words to many of my songs, but if he tries to stop singing and just let mommy do it, I say "Daddy sing!" and he does. Because no one wants to hear me cry.

Sometimes I say to them, "Mommy, Daddy, watch!" and I run in circles around the house. If they try to stop watching, or clean or something, I get their attention again, until all of their attention is back onto ME. Then I run more.

Last night I tried to share my legos with the doggie. I put the lego in front of him on the floor, but he just looked at me like he didn't know what it was. I think it's sad that mommy and daddy didn't teach the doggies about legos. But I will.

I have recently become aware that "I" means me, Brody. And that I have a lot of opinions. When mommy wears a top I like (like if it's soft or shiny) I say, "I yike it" because L's are hard to say, and mommy smiles and says "thank you, Brody." Then I say "Thank you mommy" a few times because "you're welcome" is hard to say. I also tell mommy and daddy when they are pretty. They should know. Also, they kiss me after I say that. If you want my mommy or daddy to kiss you, you just say to them "pretty" and they will.

I really like to tickle daddy's goatee. It makes me laugh.

For the second day in a row today, mommy left early for work. Usually I leave the house first when daddy takes me to school. I don't like it when mommy leaves first. Today I told her over and over "Mommy stay. Mommy carry me" but she didn't take me with her. I cried and was very sad.

Insomnia

Seriously. Why am I up?

Brody cried a bit at 1:15, then again at 2:15. The second time was because he was missing his lovey - aka, the plastic sippy cup. Yes, in addition to the monkey and 400 stuffed animals he has, he prefers the plastic water cup. Maybe he is afraid of being thirsty and that provides him comfort?

Except that, in light of past spilling experience, I just give the cup to him with about 1 T of water in it. He doesn't drink it, he cuddles it.

Now it's 4:15am. I'm UP. I have folded laundry, mentally cooked Thanksgiving dinner, filed my nails, and read a book.

I have a stressful 3 days at work ahead of me. It all depends how my clients testify - and since I can't control how they testify, I thought it would be useful just to sit up all night wondering what they will say. Yes, I know what they told me they would say. But sometimes, that changes when there is a court reporter nearby. At any rate, that's the reason I'm up. Also, one of our dogs snores really loudly.

Also, is it just me, or when you eat right before bed, are you famished when you wake up?

The pumpkin as usurper

We've been trying to get Brody to say "I love you" to us, but so far, he won't, unless we prompt him. He will say it, and he does it in this little sing songy voice. It melts my whole heart when he does, even if I know we had to prompt him to say it.

The day of Brody's surgery as we were driving to the hospital, we drove through a neighborhood that had many fall decorations on porches: pumpkins, scarecrows, corn, etc.

I hear him say from the backseat, as we drive by another porch of pumpkins, in that sing songy voice, "I love you punkin."

Success! Well, we think so. . .

I just got home from the hospital (9pm) and wanted to write a quick update before going to blissful sleep.

Everything went well. Brody cratered about the last half hour before surgery, but I think it was more because he was overtired (no nap) than no food. One of the nurses took him and entertained him while I spoke to the urologist.
I like the urologist (Furness) more and more. We sat down and he said "I've been thinking alot about Brody's case since we last spoke." He then went into this long expanation but basically, because Vacterl kids can have issues even when it doesn't appear they have issues, Furness took a different, more conservative, more complicated approach to do the same thing we talked about before, in order to avoid "making the bladder go to sleep." I was pretty tired at that point, and I don't really know what he said, but there you go. I knew Brody was his last case of the day, so I kind of joked (and kind of not joked) and asked him "Are you feeling good? Feeling fresh?" And he replied, "Actually, I've been looking forward to Brody's case all day." It was then I decided that I like a surgeon who thinks Brody's issues are fun and challenging, instead of daunting.

I walked Brody into the OR again. That just never gets easy, leaving him there, even if he is passed out. He was very glad that he got to take in his Oma blankie (what he named the blankie my mom knit for him) to the OR. Anyway, the surgery took less than 2 hours. Furness came out and cut right to the chase: "It went great. He's already peeing like a racehorse." No problems, no surprises, no issues. He combined the two urine tubes, and the reflux issue should be resolved. Brody will have bloody urine for a few weeks, and that's normal. He didn't get an epidural but a regional block thing. It should wear off tomorrow morning.

Brody did have a rough time waking up from the general. He was pretty violent and crying, and no matter how many times he squirmed or thrashed, he never got comfortable. He didn't care when Daddy or his nana arrived (Jeremy's mom) and he refused apple juice and popsicles (his two favorites after surgery). The nurse said it's a reaction to the anesthetic. Basically, after thrashing for 90 minutes, he went to sleep around 6pm, and as of the time I left, he hadn't woken up. He also hasn't eaten since 6:30am, but we have mac n cheese, rice krispie treats, cheerios and yogurt on standby in case he does wake up. He is getting so many fluids that he's not dehydrated, and he's not surprisingly just exhausted. I left him sprawled out on top of Jeremy in the "parent cot" (aka torture device) in the room.

thank you thank you thank you

Twas the night before surgery, and all through the house

It's the night before surgery, and Brody has just gone to sleep. As is our custom now, the night before a surgery Brody gets anything he wants to eat. That means tonight he had pizza, cheetos and a toffee covered popsicle. And 16 ounces of milk. And lots and lots of tickles.

I just got off the phone with the anesthesiologist. She called to do the pre-op consult over the phone. With Brody's complicated medical history, they are always interested (as they should be) about his tracheo-esophageal fistula (TEF) (the esoph didn't go all the way to the stomach) This is because for most surgeries, Brody is intubated, and every anesthesiologist gets wiggy about intubating TEF kids and kids who, like Brody, have an overbite. Thanks to one anesthesiologist at Shriners, who told me what to say, now I know to just tell the subsequent anesthesiologists that Brody has a big mouth. I don't know why, but after they hear that, I get no more questions and they seem much more relaxed.
The anesthesiologist also said that she may give Brody an epidural. Yeah, the same kind as when you give birth. She said it works really well, and helps because she needs to put in not just any IV, but a "really big IV." She said after this kind of surgery, they want to see Brody peeing a lot, and to do that, obviously, they pump him full of fluids.

The plan tomorrow is that we keep Brody at home, since he can't eat after 6:30am. Surgery is at 2:30 (mountain time). Tonight the doc said no clears after 11am, because they usually run early. That's right - early. So to be on the safe side, no apple juice after 11am in case they can take him earlier. I will wake him up at 6am and offer him everything in the house in the hopes he eats something. Keep your fingers crossed.

Brody and Jeremy will be staying overnight, then I'll take over again Thursday morning when Brody is discharged in the afternoon. Our awesome friend Stacy has offered to take Brody on Friday so I can go back to work (not surprisingly, Jeremy and I are both completely out of leave).

Now that you know the anesthesiologist story from above, you will appreciate this story even more: Tonight, Brody and I are sitting and cuddling, and eating our pizza. He turns to me, and puts his fingers in my mouth while I'm chewing. "Mommy . . . eat," he says. Then the little darling says, with his fingers still resting on my lips, "Mommy. . . big. . . . mowf." Jeremy, like many of you, just laughed and didn't say a thing. Of course, when Brody saw I was laughing, he just kept repeating "big mouth, mommy, big mouth." All I can say is that, obviously, (a) my son knows me well, and (b) the apple does not fall far from the tree. But the night before surgery, when I am most anxious, Brody knew to make me laugh.

This is the last you'll hear from me (hopefully) until after he's out of surgery. The surgery involves stretching and reimplanting those urine tubes, and is supposed to be over two hours long, which is one of the longest ones he's had. You know how I get. Jeremy is the voice of reason and tries to talk me off the ledge, since I'm worst case scenario chick. So please say some prayers and/or send good thoughts that Brody's surgery is a success and that he comes out of it safely.

Taking the fun out of dysfunctional

I understand no one's family is perfect.

I understand that in light of the family I do have, I am luckier than most.

But I just had a conversation with my brother that made me sad.

Sad because the first thing out of his mouth were racist jokes about the president-elect. I tried to steer him off of politics, and he kept veering back. Finally I told him our father would be very disappointed in him if he could hear what he was saying but that if he needed to make those jokes in order to feel better about himself, I guess he had to do what he had to do. Only then did he stop.

Sad because this was the first phone call in a long time between us, and the first one after I found out I wasn't invited to his surprise birthday party last month. And it was awkward. Of course, I was also sad because, like every other time I talk to him, I was fairly certain he was drunk.

Before I called him tonight, I received a letter from my brother that was a form letter, thanking me for participating in his 50th birthday party. (We sent him cigars). He thanked his wife, and two of my sisters, but not me (since I wasn't there) and not my other sister (who also wasn't invited). He asked me if I got the letter. I said yes. He said that's what he sent to everyone who went to the party, but a little different, because there were somethings that I just wasn't a part of.

That statement spurred me to tell him I was disappointed I didn't get an invite to the party. Because I would have come. He didn't believe me. Little does he know, I was checking flights and time off from work.

The invite never came.

I suppose I could have just flown out there, but I honestly never thought that for my brother's surprise 50th, I wouldn't at least get an email telling me the details. I felt odd inviting myself to his party. We don't agree on politics, or social issues, I think he's abusive verbally to almost everyone he knows, and there's the whole alcoholism thing, but I'm his sister. I'm his family too. And I should have been given the choice of whether or not to come to the party.

No, I have not been a perfect sister. Nor has he been a perfect brother to me.

But it's times like these I remember my dad the most. He held our family together. He always called everyone on every birthday, holiday; invited everyone to every party; we were one family with him at the head of it. My siblings out of state are my "half" siblings. My sibling in my state is my "full." We all share a father.

I never felt the distinction until after our dad died.

Now there's a dividing line. I don't know what I did that caused the rift. Maybe it's simple lack of attention on all of our parts.

But it's there. And it shows. And that breaks my heart because I miss my brother and sisters, and my dad would be devastated by the distance between us.

After he died, I found one of his journals. In it, he wrote "There should be less 'me' and 'I.' There should be more 'we' and 'us.'" He's still right.

Part of it is life stages. My oldest sister is 66. She has grandchildren. My other sister's kids are in college. I have a two year old son.

Part of it is differences in politics, and part of it is geographic distance.

But the rest of it is. . . something I don't understand.

And I don't know how to fix it.

Let it snow. . .

This morning, we woke up to see snow falling.

First snowfall of the year.

Brody is vibrating with excitement.

He ran from the sliding door facing the back to my lap looking out the front window, smiling "Snowman! Snowman!"

Jeremy said it was the first time Brody had seen snow. And I guess, in a way, that's true because he just didn't seem to care about snow last year.

Jeremy cautioned Brody that we needed more snow to make a snowman. I explained to Brody about snow angels. Brody even asked to wear a hat.

When I was driving into work about an hour later, I realized that without Brody, I'd probably be grumbling about the weather, the traffic, and the cold. Instead, I was happy and excited to watch the snow continue to fall.

And now I cannot wait for Christmas eve, when we leave cookies for Santa and carrots for the reindeer and read Twas the Night Before Christmas.

And Christmas morning, when the three of discover what Santa left for us.

Having a child is more fulfilling than I ever thought it would be. The biggest part of my joy comes from helping Brody to experience the fanciful and watching his eyes twinkle while he discovers whole new worlds. And he takes us on the ride with him.

So far, so good

Dante made it through the first 24 hours of MiBG.

Brody's reflux surgery scheduled for a week from today!?!?! I'm astounded at how fast this urologist, Peter Furness, can get us scheduled.

It's a sad state of our health care system that not waiting for months on end to get an initial appointment is surprising.

Prayers and good thoughts for a real trooper

A little boy in Philadelphia is fighting for his life today. His name is Dante. He is 17 days younger than Brody.

He has neuroblastoma. His mom, Jo, has already had one son die. Dante has been fighting this awful cancer since December 2007.

We thought Dante was about to turn the corner, then last week the bottom fell out. The cancer has spread. There is one treatment left: MiBG. Jo was given the choice of doing no treatment at all, and taking Dante home to die. Or doing the treatment, knowing it might kill him.

They chose to fight, and are doing the treatment, starting today.

The next 24 hours are critical for Dante, to see if he survives and can handle the radiation levels of the treatment.

If you pray, please pray for Dante. And if you don't pray, please think good thoughts for him.

If I owned my own Children's Hospital. . . . .

If I owned my own Children's Hospital,

1. I would make sure that there was an adults only bar where parents could come and just get a little nip to take the edge off. Nothing alcoholic-y, no drinking til intoxication. I'm talking one drink per person - a glass of wine, a pint of beer, a vodka cranberry, etc.

One drink, because after you leave your child passed out in the OR, no matter how confident and positive you feel, you really just need a drink.

2. I would require full size actual beds for parents to sleep in if they stay in their child's room overnight. No pull out couches that torture backs, and no chairs that become beds. Parents are stressed out enough. Uncomfortable enough. And sleep is paramount because parents are already probably not going to sleep well, and so the least the hospital could do would be to give you a comfie spot to lay your head.

3. Roving masseuse. I think that in addition to the nurse who checks on your child every 30 minutes after surgery, all through the night, that if they wake you up, you get a 10 minutes neck and shoulder massage from a professional.

4. The pulse ox monitor would NEVER ring in the room. If the oxygen is getting lower, it does NO ONE any good for the fracking thing to beep in the room, and wake up the child so that he cries and cries, which in turn continues to lower his O2. Make the stupid thing ring at the nurses' station, where people who can actually fix a desat can hear it.

Ok, these are all the special things that would be at my Children's Hospital. Can anyone think of others?

High

Jeremy took Brody for the first half of the day, and at around noon, he dropped him off at my office so I could take him to the hospital. Neither of us have any leave left so we had to split the day up.

As we were walking into the hospital yesterday, I received a call from the hand clinic saying that they were running behind, and so instead of appointments, they were just going to open the clinic at 2pm and see patients first come first serve.

Why, then, did we have to wait 6 weeks for an appointment if it's just going to be a free-for-all?

Sigh.

So I make the decision to ditch the hand clinic and go straight to pre-op. Brody was still in a wonderful mood, despite not having eating since 7am. We checked into the hospital, and I wheeled Brody in the radio flyer wagon up to the pre-op waiting area. They took us right in, but at this point, Brody wanted to pull the giant wagon with all of his stuff in it by himself. He refused help from me. "Brody do it, Mommy." So I let him. And he pulled the wagon through the waiting area, through the first hall and down six doors to our room. Naturally he loved the attention this stunt got him, and all the nurses saying "Oooh, what a big boy!" and "Look how cute he is!"


At this point it was around 1:30. I thought at some point Brody would remember the purple hospital gown he wears while here, or the rooms, or the "bracelet" (hospital id tag) but he didn't seem to have a negative memory. (He is 35 1/2 inches and 27 1/2 pounds, by the way. Not bad for preemie whose had 9 surgeries).


While waiting, Brody and I played football in the hallway. Everyone was impressed with his throwing ability. Catching not so much. But he was giggling loudly and we even got a few nurses in on the game.
Then they told us about the play room. I think after we got to the play room, and the hour and half we spent in there was probably the best time Brody's had in a few months. There was a giant playhouse, with a real doorbell, and doors and windows that opened and closed. And a train table wiht tracks, and a doll house, and legos and blocks and cars and books and pillow blocks. . . Brody squealed and ran with a smile right to the house. "Mommy! House!" He probably went in and out of that house 25 times, ringing the doorbell each way each time. Amazingly, he remained in a great mood, despite not having eaten for 8 hours.


Around 4:15, I took Brody back to surgery. We cantered back to the OR, and he laughed the whole way. The nurses said I really knew what I was doing, because that made going to the OR a fun experience instead of scary. Practice makes perfect.


The OR was very bright and Brody was getting apprehensive. I told him there would be no owies (at least not while he was awake) but he still resisted the mask, until I broke out the Brody song. Unfortunately I had to sing them with an audience of the surgical team, but no one made fun of my singing voice. They marveled that he calmed right down when I started singing. Well, who doesn't like to hear songs about themselves?

Surgery was about 90 minutes. Here are the findings:

1. I can stop wanting to harm the techs who did the failed cath on Monday. Brody has a tricky area - he has what looks like two tubes: but one is the urethra, and one is just a fake indentation. They were trying to cath the indentation. So the doc fixed that issue right there - he snipped the webbed skin making the two holes, and now there is one, but to make sure the area stays wide while it heals, he also has a plastic stent in his urethra that is acting like a catheter. We'll leave that in for 2 weeks.

2. Brody has two urine tubes. Not a good or a bad thing, but most folks have one. However, this means that he will not grow out of the reflux, and he does need surgery. That surgery to fix the reflux - to basically unkink the garden hose is what the urologist said - will happen in hopefully the next couple of weeks. When I marveled at the swiftness in him scheduling this and the next surgery, he said he was trying to focus on being more of a service oriented professional, since that was what medicine was. Novel idea. So we'll talk to his nurse scheduler on Monday and see what's what.

3. Brody has hypospadea and I'm not sure that is how you spell it. But he will need a subsequent operation, probably in the spring and a skin graft to straighten. The doc called this the "pretty penis" surgery.

4. Better news - neither of these two upcoming surgeries is urgent and neither of these conditions is life threatening.

5. Best news - Urologist reviewed the renal ultrasound. This is what he said: "Ok, so I looked at his ultrasound and the kidney looks fantastic."I think that is just sinking in right now. I was so tired at that point all I could do was smile. But I woke up this morning with an extra level of glad when I remembered that.

6. Bestest best news - none of the things I've talked about will have any lifelong effect on Brody. So we fix them, then we (eventually and hopefully) forget them.

Moment of levity: The doc was talking about Brody's tiny urethra, and tiny urine tubes, and I think jeremy made a comment and the doctor said, "Actually, his penis is pretty long." Jeremy beamed. It's not information I needed to know, or think about, but even the doctor laughed and said "Yeah, that just made dad proud."


We took Brody home last night. He's having a few bladder spasms, and we have meds for that which seem to be working. He seems to be fine - he slept almost 12 hours last night - but riding his bike is out of the question, because it causes "owie owie owie."

Roller coaster

Low: Monday, when the hospital used feeding tubes to try to cathaterize my baby while he screamed. please forgive me

High: Obama winning. Brody is safe and will have health insurance. And a president who knows there is a constitution.

Lower: Brody having surgery for something we hadn't even thought was an issue, a stricture in his urethra. please keep him safe and healthy And getting anxious to hear results of how his one kidney is functioning. please let it be working well

Slightly higher: At least he can have solids until 7am, and clear juice until 1pm on Friday. please don't let him think we are being mean to him

Lowest: Just now, found out 2 year old Dante's neuroblastoma cancer has spread. To his spine, and possibly his bone marrow and there are lesions all over his body, including his head. And there's one treatment (MiBG), and if he doesn't get well from a respiratory infection in his lungs (which could also be cancer) within the next 4 days, then there is no treatment.

please please please

Please.

The afterglow

Jeremy, Brody and I were eating dinner with the TV on last night, discussing vacation and holiday plans (and not Barack Obama). President-elect Obama was on TV at various points, replaying his speech from Tuesday night.

Brody was happily eating his spaghettios.

Then he interrupts us to say very urgently: Mommy, daddy!

Me: Yes, baby?

Brody: Rockobamama coming!!!

Jeremy: Yup, Barack Obama is coming.

Brody: Yeah, Rockobamama coming

Naturally, this assured us yet again that Brody is, in fact, a genius.

President-Elect Obama

I argue and write for a living, and I have no words today.

Some photos of reactions from around the world after Senator Obama became President-Elect Obama.

India:

Sydney, Australia:

Jerusalem:

Greece:

The Netherlands:

France:

Vote vote vote!

If you are an American, it is your obligation, duty, honor and privilege to VOTE.

Do so.

I will be at an elementary school precinct, serving as a voter protection watcher for the Colorado Democratic Party. If there are people intimidating voters, or too long of a line, voter suppression, I call the "boiler room."

And then they do something about it.

It's like having all the benefit of insider information with really none of the responsibility.