First day

I didn’t cry today. I teared up.

As we were standing outside waiting to go in (the kids go in themselves) I crouched down and told him how much we all loved him, and how proud we are of him, and how much fun he is going to have. He asked me if I was going to cry. No, I said. Then he pushed my sunglasses down my face to check. I held it together and he smiled.

This weekend we were driving somewhere on a boring errand, and he was so helpful and positive and sweet. I looked back at him in the car and this exchange followed.

Me: You really are a good boy, Brody.

Brody: Even though my hands are different?

Me: Especially. I love your hands. And you will realize when you’re older than being different is a good thing. You won’t want to be like everyone else.

Brody: Will my hand be straight when I’m older?

Me: Well, no. I mean, we could make it straight, but it won’t automatically be straight……Do you want to make it straight?

Brody: No. I like it dis way.

His new teacher wanted to know if he was comfortable talking about his hand to the class. He said he was. The idea is that the teacher raises it the first day, then it's not an issue later on.

The school called me around lunchtime saying that he had thrown up. Turns out, he had gotten hamburger stuck in his throat because of his narrow esophagus. I know this because he was hiccupping. Do all TEF kids hiccup when the food gets stuck? It happens periodically. I don’t know if we need another dilation surgery or not. It’s been a couple of years.

I cannot wait to see him tonight. I feel like it’s been a week since this morning.

Update

I just found this blog and am in love with that little boy. He is SO cute. Not to mention that this is a spectacular list of books for me to read at B's school. The rest of the blog has lots of pictures, and is very interesting to read about their adventures.

I talked some more to B about the questions. He's pretty secure - we say "Nothing's wrong with my arm, it's not a big deal, I was just born like that," etc.

I asked him which friend asked him about his arm. He said, "a lot of dem do." :-( I think I know it was daycare, not preschool. So that's where I'm volunteering first.

He still likes going to school. But he has been sleeping with us every night. Still scared of the dark.

So I'm going to his school at some point, not sure when, to read some books about differences. And I'm re-drafting and re-deciminating the letter to parents (and teachers) because, well, everyone needs to be educated.

I also got in trouble from MY mom for not telling her I was contracting. Sorry mutti. I didn't want to worry her, but then she read it HERE.

My contractions stopped by the time I went to sleep Friday night. They haven't returned. I think I was very dehydrated. I'm off bedrest - didn't even need to go see doctor. Have been at work and feeling very good. In a walrus sort of waddling way.

Here's a question for those moms with partners: when I go play with Brody, I rarely ask J to join in. I view it as Mommy/B time, and as Daddy rest time. When J goes off to play with B, though, the most 'break' I get is 3 minutes, then it's screaming for me to come and join them in the fun. But I just wanted to watched My Fair Wedding or The Office episode I missed or read Us Weekly. It's so annoying. I love playing with B, but sometimes, it's nice to have some me time, especially since I'm about to lose ME time for a long time in a few weeks. Anyway, do other partners do this? Or is it just me and my one friend's, to whom I've already complained? :-)


Finally, we decided not to do the 3D/4D ultrasound. $159 is just too much - it's pretty much the budget for furnishing the rest of bubba's room. I'm hoping this means bubba will stay put long enough to make it to the scheduled December 1 c-section.

Updates

Copied from B's carepages:

I'm really writing this update as a call for information, if any of you have experience with bilateral radial hypoplasia (club hands).




First, some background: Brody was born without thumbs and without radius bones in his forearms. When one does not have radius bones, the hands grow inward - at around 90 degrees (or more). The first surgical step is to centralize (ie, straighten) the wrist, so that it comes off the arm at 180 degrees, not 90 (increasing reach and functionality).



We've done that on both of Brody's arms. One arm - the left, dominant hand - is doing a great job at staying straight. The other arm has a mind of its own, and has come back to almost 90 degrees, despite the surgery.



We've consulted with Shriners and with the occupational therapists at Children's Hospital in Denver. Here is the gist of what they say: this happens. Sometimes the surgery doesn't work as well as we would hope. It's a constant tension/battle between surgical procedure vs. an arm that naturally grows its own way, ie, 90 degrees. When Brody reaches skeletal maturity, at 16 or 17 or 18, we can - if Brody wants - surgically fuse the hand onto the end of the wrist, so this issue does not reappear in adulthood.



The options we are faced with now are:



1. Re-do the surgery. Risks? Affecting the growth plate on that arm, stunting that arm's growth (his arms are already around 60% of average arm length).



2. Serial casting. Putting Brody in an arm cast to hold his hand at 180 degrees, for 3 weeks, to stretch the tendons out. Then creating a night splint that Brody sleeps in.



3. Night splint only.



4. Nothing.



We've told Brody repeatedly - since he is now at the age that he can understand what we're tlaking about at doctors' appointments - that we love his arms and think his hands are marvelous. In fact, the OT said his right thumb was stronger than his left, and he uses it more. Nevertheless, Brody says he wants the right hand to get straight. Why? Two reasons: 1. He wants it "to match" his other arm; and 2. He wants to be able to shoot webs (a la Spiderman) from his right arm.



I'm in the less-is-more camp. Maybe try night splinting to see if we get any stretch and see how it goes. The good news is that, according to all OT's, while Brody has fine motor "delays" he can do everything he wants to do with the hands as they are right now.



We're waiting to get another opinion from a hand surgeon in Denver. In the meantime, if anyone has any experience with this, we'd love to hear your thoughts!



Other than that, all is well. I had an ultrasound on Brody's little brother today - 32 weeks! He is growing right on track, with a due date of December 3. My blood pressure is still nicely controlled, and I saw the baby blink on the ultrasound, and he has hair! We scheduled the c-section for December 1, in case I make it that far. The bubba weighs as much as Brody did when he was born: 3 lbs, 12 oz. Now all we need to do is firm up a name (Brody and I have a favorite, but Jeremy is still on the fence).

Thank you for checking in!

Natural killer cell test results

No spike.

Whew.

I feel like I did the after Brody's skull surgery when they said he was out and safe in recovery. Like a load is literally lifted from my shoulders and I get tingles running up and down my arms.

I meant to do this last time - here's a link to NK cells and what they are (scroll down). Here's a discussion of pretty much all of my immune issues related to pregnancy.

Next test is in a month. Then, after 28 weeks, the placenta and baby should be strong enough that any spikes in NK activity will not harm him.

I'm 23 weeks tomorrow.

I cried when I read the comments to the last post. And when two friends emailed me their own comments, I smiled and wanted to hug everyone.

What I really wanted to write after the last post, and reading that quote, and remembering the fierce confidence of my little-girl, grinning, pig-tailed self, was this: Fuck it. I'm having this baby.

An Embarrassment of Riches

This will be the title of a book I'm writing, hopefully. Because really. This is ridiculous.




You each, you women, have warmed my heart and made me overflow with gratitude with your donations. I just . . . you are not the ones I meant to donate to the cause enfant, but you did, and I'm pretty sure you are not wealthy and I'm pretty sure you have bills just like me, and I've never even met you in person. And yet. . . .



and yet and yet and yet, you clicked that button and gave a substantial amount of money to me, a virtual friend.



And you know what it has taught me? That even if Brody never has a brother or a sister, he will have a family of his heart, as I do here. What wondrous women you all are. How can I be alone when I have all of you? Thank you thank you thank you.



Now for the rest of it.



April 30 - intake appointment at the ob/gyn. But NO ULTRASOUND.

May 4 - next ultrasound.

May 11 -  we leave for France.

This was the thought flow in my head yesterday:

I need another check NOW, NOW, NOW! How can I get it? How can I get it? What could I tell them? I called and she said I couldn't absolutely couldn't get an ultrasound on Friday. WTF? What do I do? What can I do to make them give me an ultrasound? I don't think there's a heartbeat anymore. I want to know now if there's no heartbeat. What can I do? What can I do? I should just assume there is no heartbeat. We'll find that out on Tuesday, May 4. . . . ok ok ok ok. . . . I have no time at work to schedule a D&C between May 4 and the day we leave, May 11. Hmmm. . . . ok ok, think think think.....If I stop the progesterone May 4, I'll probably start miscarrying on May 7, oh lovely, just in time for Mother's Day and my mom's visit, but I'd rather have a natural miscarriage rather than a D&C, because I don't want to have general anesthetic. Well, if I miscarry in France, that will ruin the vacation. But last time it just hurt really bad during two nights, then it was fine. I'll be fine. Should we cancel the trip? This is crazy to go when I'm miscarrying isnt' it? Ah, jeez, on that long flight while miscarrying? Shit shit shit. I need another check now now NOW.

And then .. . . . my head imploded a little bit. And then this was my thought flow:

What the hell are you thinking, Chris? My God, I am having the same control issues I’ve always had. I don't even know if there's still a heartbeat or not and I am planning how and where to miscarry? That's sick. But I don't "feel" pregnant. But I didn't "feel" pregnant last Tuesday either. It's like I haven't learned anything in the years between 2004 and 2010. Life happens. Death happens. Miscarriages happen. I control zero of it. I cannot bend a doctor's office scheduler to my will. They aren't going to give me an ultrasound til the 4th. It's a week. If the worst has happened, so be it. I will be okay. WE will be okay. No matter what, I have Jeremy and Brody, and my friends, and our family, and we are blessed in ways uncountable. We'll be alright, and we will have the trip of our lives in two weeks no matter what. No.Matter.What.

So that's where I am right now.

I'm just so tired of trying to control this. It feels like trying to climb a 100 foot high wall with only my fingernails. I'm tired of living in an angst-filled limbo. I'm tired of worrying, and wondering, and waiting and worrying. I'm tired of putting my life on hold and becoming obsessed with trying to do something that isn't my job to do.

Just like it's not my job to figure out whether another ash cloud will prevent us from going to, or returning from, France, it is also not my job to obsessively fixate on whether there is still a heartbeat. There was last week. Since then, I've done all that is within my power to keep her in there, and I will continue to do all within my power to keep her healthy. Shots, meds, tests.... but I am going to stop trying to unsuccessfully do the other stuff.

I'm done. I'm giving it up. I hope.

It is maddening, madness, trying to control what I really cannot. What I'm not supposed to control. I control when I take these meds and how often I shower. I control what speed my car goes; I control what clothes Brody wears.

I'm not supposed to control miscarriages and volcanos. I'm supposed to hope, and to pray, for the best outcome.

When I think about the things in my daily life that seep into me and make me anxious, it is the things I cannot control. Other people's opinions, whether Brody's kidney will keep functioning, whether he will have good friends in school, what the judge will rule, what the jury will say, what the clients will think, what the doctor will say, what the genetics will be, what the review will say, what the witness will testify. . . .

I think it's healthy to hope for outcomes, but why do I spend my energy on worrying about them? What the hell is that about? What purpose does it serve? None.

So I'm done. Or I hope I'm done.

I give up.

I have no idea how these next two weeks before our trip will go. (Duh, you say. But to me, it’s a revelation). But whatever happens, I will be okay. I have Jeremy and Brody and friends. . . I have friends on facebook that I’ve known for decades that have posted the nicest messages to me. I have you, I have my sisters, and my mom. And whatever happens, it is an adventure. Perhaps one I do not want to experience, but one I am determined will teach me things I need to know.

The man who said this is probably a bit of a charlatan. But I like the quote anyway. “Control is never achieved when sought after directly. It is the surprising outcome of letting go.”

Here’s hoping.

Inundated - let's help - Five Skies

I know a family who is going through a very very bad week with their son, who has a similar diagnosis to Brody, but who is sick, very sick, with many many more hospitalizations (think most of his life). His family is hanging on by a thread, to their sanity, and hope.

I just heard of another little boy, Dax, who is 2 and has only weeks to live, so his family and his neighborhood are decorating with Christmas lights early.

It's gotten to the point that I feel nauseous when I see these things. I think the nausea is telling me to get up and do something.

So, I'm doing this.

Five Skies is NOT in any way a 501(c)(3) foundation. It's not approved by the IRS. It's an idea.

But if I have to wait for the IRS to approve it, it'll be months, perhaps even a year.

If you have $5 or $6 or $2 to spare, please donate to help the families of these children.

There is nothing worse, nothing, than watching your child suffer.

I know money will not fix these children, but it might help ease the stress and terror of the family, maybe even just let them know that someone cares.

It won't count as a tax deduction, you are not giving to a nonprofit, but every dime you give will go to the family of a sick child.

I know no one has money to spare, so I understand. I just. . . I just cannot let this go anymore. It's not fair, it's not fair that these families are torn apart, that mothers cry for their sick child, that little brothers and little sisters grow up in hospitals. . . I'm so sick of it, and I'm getting angry, and I need to channel it to something positive.

To all who donate, you get a guaranteed accounting of where and to whom your money goes.

Special thanks to Sarah, who, days before she gave birth, provided the mock up graphic for Five Skies.

Some honest scrap

“The Honest Scrap award is given by other bloggers who consider a blog’s content or design to be brilliant. The awardee must then post ten honest things about themselves and pass the award on to other bloggers who fit the bill – in other words, whose blog is brilliant.”

Thank you to Hef from Spewage and Nic from Single Mom in the City, who both gave me this award. That's pretty swank. So here we go......

Oh wait, before we start, to read an update and see pics of our (successful) Salt Lake trip, here is the link to the carepage.

1. I've been avoiding doing this. Make of that what you will.

2. At the urging of my friend Megan, her mother Patti (both of whom are published authors), my mother, my husband, sisters, sister-in law, and a few friends, my goal before 2009 is finished is to write a book proposal chronicling the adventures of recurrent miscarriage, living with Vacterl, and being a complete mess on a semi-regular basis.

3. The vacation contest. I really, really, really, want to win. Really. We are the 2nd highest vote getter: see here. But the judges can still pick any one of the 15 for 1st, 2nd and 3rd. And the highest votes (50,000+) were for a kid with muscular dystrophy who is in a wheelchair and on a vent. But my hopes are so high that on a daily basis I go to the website and pick out my dream vacations: most recurrent are St. Thomas and Villefranche-sur-Mer, France.

4. Lately I've been having moments at night where I imagine the moment of my death. And how devastatingly terrifying it is. And unbelievable. It really really really sucks and I'm trying to stop. I also have been having fears of me contracting some kind of cancer, or having a stroke. I think as the anxiety about B's health issues wanes, my sick little mind wants to focus on something else. I should probably be on paxil. But I'm not.

5. If I was not married or did not have a child, I'd probably be living in Europe. In the UK or France. I love it there. Growing up, we went to Germany a few times (my mom was born in Karlsruhe) and Paris. I love Germany too. I love the different-ness, and how close Europe is to even more exciting places I want to visit. In many ways I feel like home there.

6. If I had it all to do again, I would not be a lawyer. I'd be a psychologist or forensic anthropologist. Or I'd marry rich. Or be a teacher not because I'd be good at it but just to have summers off. I really do love the job I have now, but it's actually a really difficult career. There are so many land mines you could step on at any moment and other lawyers (on the other side of a lawsuit) are, well, jerks. And I'm a jerk to them too (when I have to be only). And most of the time when I'm in court, before I speak I feel sick to my stomach. I love the investigation side though, and the writing.

7. On at least a weekly basis, I look at Brody and marvel at how beautiful and clever he is. I get teary-eyed about it. I imagine how different my life would be without having ever known him, how much less vivid and less purposeful it would feel. Less heartache, too, and less worry, but also much much less joy. I don't know how it is, but I love him more every day. Probably more every hour.

8. Some of my favorite people in this life are women who I have never actually "met," except online. Their wit, wisdom and courage make me want to be a better person.

9. I was hating our house a few weeks ago, the lack of a master bath, no closet space, the crappy kitchen, the lack of new-ness (built in 1964). I went online and searched for houses in our price range that were for sale with all of the bells and whistles. I found some, but they lacked what I really love about our house and (surprising myself) consider essential: our neighbors and old growth trees. So now I'm oddly content with our house, even though it's a damn mess most of the time.

I then did the same thing (sort of) with children. I imagined if I could have children with no problem, and if we had a lot of money, if I would want another one. The answer was, surprisingly, only maybe. The truth is, I don't really feel incomplete. The three of us are a family and, let's face it, children are a lot of work. I don't know if I want the newborn experience again. I don't know if I want to spend less time with Brody. I don't know. And oddly, that has eased my heart a little bit.

10. I sabotage myself. In any number of ways. This is a recent revelation for me and it tells me that on some deep and very well-defended level I do not think myself worthy of not sabotaging. I don't know what to do with this knowledge.

That is my ten. Here are the two to whom I will pass on the challenge:

AnonMom

and

Shannon

Hello 4 digits

1001.

Oh, wait, 1006.

Those are the votes we have so far. In 3 days.

The internet is a powerful tool. Facebook too. My friends who are helping publicize this? Sublime. Even if we don't win a thing, this has been a very humbling and heartwarming experience.

In truth, I'm starting to feel like a bit of a shit. Dante's mom put it on her carepages and her facebook. An online friend who has a son Brody's age and whose husband has ALS put it on their carepage, and emailed everyone in her contact book. It floors me. Both of them deserve this more than me. If we win, we can pick a different vacation. I want to pick a bigger house and invite them to stay with us.

Thank you to everyone who is forwarding emails and putting this link on their blogs and voting. I keep telling Jeremy our new number. He says not to get my hopes up. I'm not. Well, not really. But checking on the number is addictive.

I wonder if people are reading or just clicking on the button. I kind of love to think that people are reading, and that at the very least we are spreading awareness about Vacterl association and recurrent pregnancy loss.

Here is the link.

1011.

The Mystery of Medicaid Mesmerizes

Interesting little letter arrived in the mail over the weekend. It's a medical service questionnaire from Colorado Medicaid Program.

First, however, I wanted to share with you why the health care system is broken.

Bill from hospital last fall. Brody had an outpatient esophageal dilation. General anesthetic, outpatient, and the procedure is not in the OR - it's in a regular room. Total procedure time is less than 20 minutes. We were in at 7am and out by about 3pm.

Total billed by the hospital? Guess.

$8,000?

$10,000?

$14,000?

No. Wrong. Too low.

$16,638.

Really.

According to the bill from the hospital, Aetna paid $6831.51.

Then a favorite phrase for anyone struggling with medical bills: "New account adjustments", aka, "contractual adjustment" : $9598.00. The hospital deducted $9598 from the bill for no apparent reason. How mysterious and amazing.

Due from us? $208.49.

Really? You, the hospital, can write off almost $10,000 in your bill but you still see fit to bill us for two hundred bucks???? It's absolutely maddening.

I'd like my own contractual adjustment, please.

Back to the mystery of medicaid.

Apparently, the hospital ER we went to during one of Brody's tooth jamming episodes billed Medicaid for their services. And Colorado Medicaid wants to know who is to blame for B's injury - was it an assault? Was it a car accident? Do I plan to bring legal action against anyone?

I dug through our pile of 2009 bills. At the very top of the bill, in small print, it's there. The hospital has billed our insurance company and Medicaid. I looked more closely at the bill: both are on there.

Do we have Medicaid? What the......

After 90 minutes on hold and calling three different offices, I've requested a coverage letter from the Medicaid people.

I might be able to make the bills go away. This is the hospital associated with the hospital at which Brody lived for the first six weeks of his life, the one at which we did have Medicaid because Brody was so ill and so little when he was born. It must have been in the system, but obviously - even though we never applied for Medicaid after he was discharged, there seems to be some indication that somehow, despite our income, Brody has it.

Google has not actually helped in my search. I put the question to my friends at the Vacterl Network chat group, and have received many interesting answers about available money for kids regardless of income.

I distinctly remember, in September 2006, the hospital social worker telling me that after Brody was discharged, we would not qualify for Medicaid because of our income and that, to even try, we'd have to apply.

Which I didn't even bother to do because the social worker assured me.....

I'm utterly flabbergasted and suspicious and confused.

Shock a bird, build your kid's self-esteem?

Brody has 4 fingers on each hand. Well, now he has 6 fingers and two thumbs. I am over the moon happy about that. He looks at his hands - specifically his new thumbs - and tells me that they are "beautiful," and "perfect," as he has heard us say so many times.

He insists, however, that when he holds up his whole hand and all his fingers, that there are FIVE.

When I ask him, for example, if he wants one or two pieces of toast, he holds up all of his fingers on one hand and says "Five, mommy! I want five toast!"

Or when we practice counting to ten, he goes to his hand, and says "Five!"

What the hell do I do? So far, after lots of thought, I've come up with....nothing. I just let it be. I figure sooner or later he'll figure it out. And since it's okay to have 4 fingers, or 8 or 11 or 2, what's the big deal. But should we be discussing this? Ignoring it? Save it for later? Don't ask, don't tell? I don't know. But it's factually inaccurate.

This quandary led me to buy this book. Building self-esteem for, as we say, differently limbed children.

I still hate all these labels I see everywhere. Although I can live with differently limbed. I made that one up based on children with a limb difference that this organization - whose picnic we are attending in August - gave me.

For example, I hate describing Brody or other kids as special - because we all are. I don't really enjoy differently abled - because we all are. I hate handicapped - because we all are in one way or another. But I hate these labels not just for the technical inaccuracies, but mostly I hate them because they are associated with negative implications or inferior inferences. And Brody - and every other person - does not deserve that lot in life. Maybe those associations are all in my head, but they still exist for me.

But it's also that the judgment with these labels - it is not friendly or nice; it's condescending, pure and simple. I detest condescension.

I like limb difference because it's factually accurate and nothing more.

Which leads me to Brody and the five. Do I emphasize it? I have in the past and I think I was wrong. I made a guy in a Red Robin costume jump in the restaurant when, one night at dinner, the giant bird came to visit our table, and I said to Brody "Look! He's got three fingers and a thumb, just like you!" The bird jerked his considerable head to Brody's hands. I smiled. Brody loves that Red Robin bird.

Is that wrong? I want Brody to have positive experiences about his hands, but then I think that just emphasized the difference and maybe was negative? How much self esteem can a kid get from having hands like a big red bird mascot? Talk about grasping at straws.

I don't know.

But it was kind of fun to shock the bird.

He said, "It's perfect!"

Brody had the cast removed, which means we got our first real look at the new thumb. He wears a splint for a month full time, but we get to remove it when he takes baths, or goes swimming.

I've posted this picture on Facebook, his carepages, and now here. I can't get enough of it. His thumb is magnificent. Stunning. Captivating. I can say these things because I didn't have anything to do with it and so it's not (really) bragging.

It's all Dr. Doug Hutchinson at Shriners, and of course, the wondrous Brody.

Brody has thumbed his nose at being conventional and, instead, has thumbed his way to greatness.

Too much? I know. I couldn't help it.

Oh, and the title of the post today is because that is exactly what Brody said, with a grin splitting his face open, when we were looking at his new thumb.

Thumb pictorial

I have so much to say and am too tired to say it.

So here are some photos to tell the story for a bit while I recover. Brody is well, but tired. His thumb, his THUMB, is pink. Glorious, circulation-full, pink. We are happy.

Brody in the play area behind the hospital on Wednesday:

Thursday, after surgery. He wanted a yellow thumb and cast, but we settled on purple. Luckily, the thumb stayed pink.

Surgery was 10:30 - 2:30. I think he got back to the room around 3:30, and he did this until the next morning:

The next morning, Friday, around 18 hours after surgery:

Saturday. Brody asked me to take this because he loved this dinosaur in the hospital lobby. He also informed me, "Mommy, I wanna say cheese." He couldn't say it though, because he was apparently looking adoringly at his new friend.

Saturday afternoon we flew back to Denver. Sunday morning, we went to the park to play. And for the first time ever, he navigated the stairs himself and went down the slide. So many times that I had to stop him because it was getting windy and cold, and he needed to go down for a nap.

a potentially meaningless observation

When I was growing up, one of the neighbors we had was Emery Booher.

Emery was a sweet old man. Sort of like a grandpa to me.

He and his wife lived across the street from us. His wife was quite senile, or maybe she had Alzheimers. At any rate, somehow I spent a lot of time in their house. I'd listen to Emery's wife talk on, while I would stare at the hundreds of china dolls dressed in 17th or 18th century dresses that made my 12 year old self blind with dress envy.

I'd also talk with Emery.

I don't remember how old he was, but he remembered well a time when there were no cars.

He told me how obnoxious "folks" thought cars were at first.

He also told me that when the government introduced social security numbers (see what I mean about old?), he remembers everyone being very nervous about the government having that much information and control over you.

I also think about the more recent history. While I was going through my miscarriages, I'd think, "Well, at least there's hope for me. Fifty years (a hundred years) ago there wouldn't be any treatment for my issues." The reproductive immunologist I treated with, Dr. Beer, his first successful "Beer baby" (a child born with the help of reproductive immunology) is now in his 30's.

After Brody was born, I was told that if he had been born a generation earlier, he probably would not have lived. Here's a gruesome discussion of the first documented TEF/Vater child - from 1839. That could have been Brody.

The first documented case of bilateral radial club hands was in 1733 - again, an autopsy. (They originally thought the condition stemmed from syphilis, apparently. Umm....no).

That made me think of my own evolution. If I'd been alive in the 18th century, or 1950's, I doubt I would have found the support of other women who suffered from miscarriages. I never would have found out about reproductive immunology (because (a) it didn't exist, and (b) I found out about it from the internet). And I doubt there would be any kind of open discussion about congenital anomalies in any kind of supportive or positive way.

But now, I have a blog, and a carepages site. I think every single one of the Vacterl families I know have at least one. Some have both. And that's not counting the message boards through Yahoo and IVillage. All dispensing confidential medical information, or monumentally personal emotional information.

I really have no point to this except I find it a fascinating evolution of us as a species or a culture....and I'm so grateful for the internet, and as much as I complain about them, the advancement of medicine and medical technology.

I'm so happy I am living at this moment in time.

A call for editors

As I mentioned Monday, I'm drafting a letter to B's new preschool explaining his hands. I think there is a lot of natural curiosity, and I'd rather answer parents' and childrens' questions in an upfront way, rather than one day walk into daycare and have a teacher ask me if Brody has Downs syndrome in front of everyone. (Yes, that really happened, and that was after Brody had been there for a few months. I was shocked that the assistant director would not be more observant, or you know, read Brody's file).

I found the letter on this website, which I was excited to learn about. The draft on the website, however, is a bit condescending in tone. I've tried to eliminate the condescension, and answer some basic questions about why his arms look the way they do.

I could really use your assistance in editing the letter and getting your gut reaction to it if you received it. In the letter, I do not mention Vacterl, because that would require sharing a lot of information about B's medical status that I'm just not willing to give out to parents of other children (the preschool has it, however). Really, please post your comments. I have permitted anonymous comments just for this reason. I want your honest responses. Here is the letter:

March 16, 2009

Dear Friends,

Our son Brody is a new classmate in the 2’s room at xxxx preschool.

We’re writing this letter because many of Brody’s classmates will probably be curious about his arms and hands, and we want to make sure that everyone is comfortable with his limb difference.

Brody was born with bilateral radial club hands: specifically, he was born without the radius bones in both forearms and without thumbs. Thanks to Shriners Hospital, he has had several operations to try to help straighten his arms (which do not like to grow straight), and in January he had the first thumb pollicization surgery, in which his right index finger was moved into thumb position. In April, he will have the same surgery on his left hand. In an effort to satisfy natural curiosity, I'd like to tell you a little bit about Brody.

First of all, this is the way Brody was born. The doctors do not know how or why, but the latest research shows that Brody’s arms were probably growing this way approximately 35 days into the pregnancy. We’ve had luck explaining this easily to kids as, "That's the way Brody was born. His arms didn't grow quite right when he was in his mommy's tummy." Some children hear the physical explanation and go about their business without second thoughts. Sometimes, though, kids might want more details.

We’ve learned that the easiest way to help a child understand something like this is to remind them how we are all different from each other. We have had success talking with kids (Brody’s cousins and other classmates) by pointing out the obvious differences: hair, eyes, glasses, height, skin color, size of feet, etc. The list is endless. It's also a good idea to explain that Brody’s arms are not broken, painful, shameful, sad or frightening. They are simply different.

While Brody’s arms and hands are unique, Brody doesn't consider them “special” and we do not refer to them as such. Sometimes children will also be concerned about how Brody will do certain things with his unique hands. I usually remind them that he does all the same things they do, just in different ways. Brody has never had radius bones and 10 fingers, so he learns to do everything with what he has (and then shows us how he does it).

Once you get to know Brody, it's easy to forget he has unique hands. He adapts easily. He feeds himself, likes drawing and playing catch, loves Play Dough, washes his own hands, and wants to build towers with legos on a daily basis. We are teaching him that he should be proud of his “new thumbs” (as we are) and he will probably show them off if you ask. There are tasks he gets frustrated with but most of the time he takes challenges in stride and manages creatively.

I just wanted to let you know that we welcome conversation about our son and we look forward to getting to know you and your children.

Sincerely,
x

Some kind of wonderful

Some kind of wonderful.

That's what I said to myself when I saw this video. It's a video that was posted on the Vacterl Network parents group.

Alex, the young woman in the video, submitted the film for her fine art degree show project.

She has the same limb issue (I can't say the d word) that Brody has on her one side.

One parent who saw it called it poetry in motion. Another parent said they should show it to every parent of a child right after the child is born without thumbs. I agree with both of them.

And I'm going to encourage Brody to make a film of himself one day, maybe with the help of his cousin and my godson, Sam, already a filmmaker, so he can help parents and children dealing with this.

It really is a gorgeous film.

I get it now.

I get it now.

I finally understood.

On the grass, in the middle of 100,000 people, holding my son.

Sure, I advocated for Obama, I've campaigned for Obama. I've been a Democrat my whole life.

But on a Sunday in October, in downtown Denver, I finally understood why this election is essential (and I do not use that word lightly) to Brody's life. More on that in a minute.



First, however, let me just tell you, you have not said the Pledge of Allegiance until you've said the Pledge of Allegiance with 100,000 other people surrounding you.

Brody and I were on a grassy knoll, and the speaker announced the Pledge of Allegiance. Everyone around me instantly put their hands over their hearts, and said those words. I got chills, and a little teary eyed. This was before Obama spoke, before anyone spoke I think. It's quite awe-inspiring to hear strangers beside, before and behind you reciting words along with you describing your joint allegiance to your nation.



Also, even before then, there was an energy in the crowd of anticipation, excitement, hope and community. I had Brody in the stroller and no fewer than 6 different people helped me with him while we waited in the security line (he was fairly cranky after the first hour of waiting).

Eventually, after Brody sat on my shoulders eating crackers, had a meltdown and fell asleep on me, and after some folks offered us their lawn chair, Obama came to the podium and delivered his speech.



It was right around the mid-point that I had the epiphany. I finally understood what this election means in my heart, and how critical for Brody it is that Obama be elected. Brody was still asleep on my shoulder, and Obama started speaking about health insurance, and how his mom was denied cancer treatment because the insurance company said it was a pre-existing condition. And he said that he will make it so that insurance companies have to cover pre-existing conditions. And I looked down at my sleeping son, and a wave of realization crashed over me and overwhelmed me.


One of the issues Jeremy and I were most worried about when Brody was born was health insurance. He was born with multiple medical issues. All pre-existing. Brody is on Jeremy's health insurance through his work (it's better than mine). What if Jeremy gets laid off and we have to switch Brody to my health insurance? Everything he needs care for is pre-existing. What happens when Brody is an adult and gets his own health insurance? Would it cover an operation on his kidney? Would it cover a dilation surgery on his esophagus? No.


I've known about Obama's idea to require coverage of pre-existing conditions for over a year. But when Obama said what he said at the rally, something about being right there, in the presence of so many people, so many other kids, and having witnessed the serious illnesses of other children with Vacterl association and just the notion that, finally, someone thought it was time to change insurance companies' utterly unfair control over the health of children like Brody, especially Brody. . .


I started crying. Completely. Tears streaming down my face. I squeezed sleeping Brody in my arms and whispered to him "This is for you, baby, this is all for you. We will get this for you."

I feel like I'm on candid camera but on the phone.

I am trying to schedule an appointment with the local orthopedic folks at the Denver Children's Hospital.

We don't have a local ortho surgeon, because we go to Shriner's in Salt Lake.

I go to the website. There is a Limb Deformaties Team. Not one of my favorite words, but the page on the website says to call and ask for an appointment for the Tuesday Limb Clinic. I call the number.

The woman who answers has never heard of the Tuesday Limb Clinic. Eventually she says "Oh, ortho is what you need. Please hold."

Then I arrive on the extension of another woman. I repeat I want the Tuesday Limb Clinic.

"What's your referral?" She asks.

"Ah. . . my son has bilateral radial club hands. We go to Shriner's in Salt Lake for the surgeries, but I need someone to splint his hand before the surgery in January."

"No, but who is the orthopedic surgeon at Children's?"

"We don't have one. I just need a splint."

"Ok, well you can't come to the Limb Clinic. You have to get a full workup by the PA before a surgeon will see you to see if (garbled)"

"To see if what? I didn't hear what you said."

"To see if it's a true limb discrepancy."

"My son does not have thumbs and he is missing radius bones in both forearms."

"Is this with his arms or his legs?"

"His. Arms."

"Oh, well then you need the hand clinic."

"Ok. Do you have that number?"

"No. That's me too. Ummm. . . .we have an opening on November 7, at 1:30pm."

This phone call is exactly why I avoided contacting them. Honestly, people who say that socialized medicine is frustrating due to bureaucracy have never actually been truly ill with the current scheme.

On a positive note, we are may be participating in this study by the National Institute of Health, although I just called the number that the intake person said to call, and they hung up on me.

Hmmm . . . . . . .

Sometimes a thumb is JUST a thumb

I bought the above product for Brody as consolation for him not having the thumb surgery. (Because if he had had the surgery, he'd be in a cast and unable to take baths much less use finger paints in the bath).

The other night we used it for the first time. As I was opening it, I noticed for the first time that the place where you poured the paint was the yellow plastic hand in the picture above. The perfectly formed five finger plastic hand.

My first reaction was a visceral recoiling - and the requisite anger, once again, that my son does not have radius bones, 8 fingers and 2 thumbs.

Then I had an epiphany of sorts: so what.

I had an English teacher in high school, Miss Smith, and whenever we wrote an essay, she made us include the "so what" of the subject book. As in, what is the higher purpose or symbolic point of this work of fiction? What does it really mean?

In the bathroom, I looked at the plastic hand, and I finally was able to say, So What.

I tried to figure out what it really means that Brody doesn't have thumbs right now. Or that he only has 4 fingers on each hand or that his arms are and will be shorter than most other peoples' arms or that his hands will probably continue to want to grow inwards at 90 degrees instead of out at 180 degrees.

Here is my answer: it doesn't mean anything. There is no greater purpose or nefarious point about it. There is no "so what" inherent in missing radius bones and thumbs.

It is just that. Missing bones and fingers.

And nothing more.

Which led me to back down from my imminent moment of despair when pouring paint into the yellow plastic hand.

So what if he's missing these things? So what? No one's life is absolutely perfect. These things do not define him. The important things, the things that really and truly matter, are already woven into Brody's life.

He will never ever doubt that he is loved. He is happy and healthy, thank God. He is safe. He has, at the age of 2, more wit and intelligence than some adults I have known. He has eyelashes that are almost an inch long and dimples that break my heart. He has already enriched this earth with his very existence and presence.

As a result, there is no way that I can acknowledge the greatness of Brody and simultaneously lament something as insignificant, in the grand scheme, as missing two bones and two digits.

And so I will not.

No thumb, no surgery

Just so we're clear, here's what happened over the last week. . .

Brody spiked a fever starting Wednesday evening - AFTER we flew to SLC, and after we checked into the hospital. It responded to Tylenol, and his chest was clear, but surgery was still cancelled. The anesthesiologist would not perform the surgery because of the risk of breathing problems after the extubation.

We had an incredibly rough night Wed night. They collected urine around midnight to do a UA - they thought it might be a urinary tract infection causing the fever. Which is, by the way, another worry - because if it was, that means (a) the health of his sole kidney is at risk and (b) obviously he didn't grow out of the reflux issue by age 2. Thankfully, the UA came back negative.
We did manage to convince the doc to at least take the rod out of his ulna, since it was almost poking through his skin and causing pain. After waiting 11 hours with no food and 5 with no liquids, the rod just poked thorugh on its own, and Brody started bleeding. The nurse put a bandage on it, and Brody got some Versed (relaxing medication) It took effect, and he was basically high as a kite. About 40 mins later, Hutch (the hand surgeon) came from the OR, took out what looked like a sterile pair of plyers, and while I held Brody's arm, and Jeremy held a bandage underneath for the blood, Hutch slid the pin out. Brody didn't mind too much, being high and all. Still, his nurse was amazed and kept saying that he must have a very high pain threshold.

Why can't we have surgery later this month? Although Shriners has several orthopedic surgeons on staff full time, our doctor, Hutch, is a hand surgeon specializing is micro-surgery. Shriners doesn't have him on staff. In fact, Hutch isn't paid by Shriners at all - he donates one day a month to surgery there. You may have noticed that all of the surgeries are scheduled for the end of the month - Hutch donates the 4th Thursday of every month. Which makes it all the more critical for Brody to be healthy when we do have surgery.

I happened to see Hutch's scheduler in the cafeteria Friday morning. She said that the 4th Thursday in September, Hutch is on vacation. The 4th Thursday in October, he is already overbooked. The 4th Thursday in November - Thanksgiving. And the 4th Thursday in December? Christmas.

To say we are devastated is an understatement. I've cried a lot, and Jeremy and I are just so angry - but at what? There's no one to blame so we feel completely powerless and useless. We undertook this course of aggressive surgeries so that Brody would have thumbs by age 2. Hutch told us it was critical for Brody's development to have thumbs by age 2. Well, he turned 2 September 1 and he has no thumbs. Originally, he was supposed to have thumbs in June. That was pushed back and pushed back because of an ear infection, a cold, etc. Of course, Brody has not been ill at all since April - what are the chances he gets a fever after he's already at the hospital for surgery after being healthy for 4 months???

We spent another crap night in the hospital, then Frontier wanted $226 PER TICKET to change our flight to a day earlier. Our travel person at the Shrine in Denver talked to them, and they ended up charging only $65 for me to fly back.

So basically, no thumbs for the foreseeable future. What was especially frustrating to Jeremy and me was it seemed like there was a complete lack of organization on the hospital's part. If I hadn't accidentally run into the scheduler, I would not have seen her or know this information. No one acknowledged what a blow this was to Brody's development. No one admitted that all the fixators on his right hand, all the pain and stretching done to that side, is basically worthless, because that right hand of his has returned completely to coming off his wrist at 90 degrees. And then, out of the blue, some hand therapist came into his room and fashioned a splint out of plastic and velcro - to stretch his hand. If an external fixator with 4 steel pins for 3 months can't stretch that hand, cheap plastic ain't gonna do it either. Sure enough - it slid off Brody's wrist within the hour. Worthless. Of course, that hand therapist said we'd have to go to a hand therapist in Denver to continue "distracting" the wrist by re-melting the plastic splint, and she said she'd give us her card so the Denver therapist could contact her. Which she never did. Which doesn't matter because we're not depriving our son of the use of his right hand for 5 months.

My biggest frustration is that I feel like the ball has been dropped. I know Shriners is a fantastic organization, and I know it's not their fault Brody got a fever, but the whole bedside manner and organizing our treatment plan was lacking this time. We still don't have a surgery date, not even tentative.

I don't know what our next step is, but I am looking into designing a splint for Brody that will allow him to use his hand, be comfortable and actually stretch tendons and muscles. Plastic doesn't cut it. Plaster and fiberglass don't work either. Between my husband and I we are going to figure it out.

Oh, and the fever? It went away. No other symptoms. Just gone.

Jeremy reminded me it could be much worse, as we saw several kids in the "halos" and wheelchairs at Shriners. Then I look at Brody, and he is as capable, determined, giggly, and ridiculous as ever. I know he will be fine in the long run, but I just so wanted this chapter to be concluded already and for him to have at least one thumb by his 2nd birthday.

Thumb pollicization

In 6 days, Brody gets a thumb. On his right hand.

I just saw a blog post from another Colorado mom whose son Benjamin just had this surgery done. It's very exciting but the photos are graphic, so if you don't like photos of stitches, don't go here.

Dawn is the only other mom in Colorado I know whose son has Vacterl, and the only other mom I've talked to whose son had the pollicization procedure. When you have an ill child, or a child with any kind of medical issues, you gravitate towards other parents who share your child's story and feel this instant connection with them. That is why we are so very happy for Benjamin and his whole family!

Let's hope Brody stays healthy so he can have this surgery next Thursday!