Wednesday, November 30, 2011

Multiple Realities

There's a psychological concept called theory of mind that is basically the ability to recognize that someone else might know a different reality than you do, that people's knowledge, thoughts, emotions can deviate from our own.  This is a vast simplification, but the basic idea.

I knew this from psychology and child development, but the last year has made me realize the degree to which different realities can exist.

Chiron was written up in a local weekly newspaper for his wins in the Preemie Power competition with an emphasis on it being Thanksgiving. A coworker made a copy of the article and put it in the copy room.  I then received an email from another coworker that was congratulating us.  The crux of it was:
I read the article and just kept forgetting to shoot you and email and say: WELL DONE!!!!!
With the exception of the loss of Aurelia, this year's holidays should be a HUGE night and day for your family and household than last year's at this time!"
Our realities are so different that I just didn't know what to say, how to respond or even to think.  First off, the ability to say "with the exception of the loss of Aurelia" like it was just some small bump in the road that was worked through completely blows my mind.  Seriously?  I may need an outside perspective to see if this is as odd a statement as I think it was.  "With the exception of the death of your husband, wasn't this last year great?" 

Then I started thinking about this idea of theory of mind and realized that our realities are even farther apart.  What exactly was she praising me for? The subject was "Kudos to You & Chiron".  For his prematurity?  For having written him up?  I think the honest answer is probably the fact that he won and then the fact that there was an article written on it, but praise for it kinda strikes me as odd.

I know that she never "lived" in the technical definition of surviving unattached to anyone else, but she definitely was alive.  It just blows my mind that someone who knows what happened and not just the basic details could think that Aurelia's death would ever make sense as an aside. And this is someone who is a good and kind person who does care about us.  It's not like she said it with intentionality.  I think that's really what blows my mind.  That it didn't cross her mind at all that I would feel oddly about that statement.

My reality sometimes makes me think I may be slightly crazy.

Monday, November 28, 2011

Lactase Deficient

"If I've gotta give my kid an autosomal recessive condition, I'm thankful for what it is. "
       -This was one of my thoughts on Thanksgiving. 

The Tuesday before Thanksgiving, I took Chiron in for an appointment with the pediatric gastroenterologist.  He agreed with me that Chiron really was looking great and seemed to have turned a corner.  I told him that we were five days into a trial of not having Chiron take his GERD meds and we jointly celebrated.  Then we discussed that nothing had turned up from his scoping the week before.  We agreed that we were both comfortable with waiting two months until his next appointment, which is huge for a kid who had been in the 2-4 week schedule and then I started packing him up to go.  Then the doctor popped up that he just realized that he hadn't seen the results for one test and so he wanted to go see if they had it yet so we could be completely done.

I followed him out into the hall as I was having him grab the results of the lead test that I'd had him order with a previous blood workup (I refused to take a kid who was getting blood draws every two weeks for an extra blood draw just to test lead and thus his GI ordered it even though it was his primary that wanted it). 

Then his face suddenly screwed up and there was a look of complete surprise.  He turned and asked us to go back into the room.  He told me that this was not the result he anticipated, but the disaccharidase panel showed that he was seriously lactase deficient.

Basically, he's lactose intolerant.  But not like normal people.  The normal condition is for lactase levels to drop in humans as they get older and need a less milk-based diet.  And this includes some people whose levels drop so low that they are lactose intolerant.  Babies, not so much.

Being able to digest lactose is really imperative to survival.  All mammals produce lactose as the sugar in their milk, so it's not just a case of the mother obstaining from dairy.  The only treatment is to provide a food source that doesn't include lactose.  In our case, the Neocate that he was already eating along with his restricted diet fits the bill.

Apparently this condition of lactose intolerance as an infant is called congenital lactase deficiency and is a genetically controlled condition that he said is believed to be autosomally recessive.

It's really not a big deal now, but he did mention that even twenty or thirty years ago this likely would have been fatal, so I'm very thankful we live in this modern era (again and again). At this point, we will just continue his restricted diet (no dairy, soy, wheat, eggs, peanuts, nuts, fish, shellfish or beef) as the primary way to manage it.  His GI doc does think that even with this diagnosis (which is a clear diagnosis of medical fact/measurement rather than surmise) that Chiron likely has protein intolerance as well and feels strongly that Trajan definitely had protein intolerance, so Chiron is scheduled to see the allergist December 5.  They will likely schedule the blood food allergy tests (RAST if I remember right from Trajan) at that point to help rule out major reactions before we try any of the currently restricted food groups.

Apparently his already low levels of lactase will likely continue to drop off.  It is possible that he will be able to tolaterate small amounts of hard cheese and yogurt when he is older.

All and all I would say this is good news.  It's a diagnosis that is very easy for us to work with and gives us clear and easy things to work with in order to gain some weight.  And it makes me feel that causing this sad face was more worth it:

Though I do know some friends that would argue that a lifetime of being unable to eat ice cream is deserving of a face much more sad than this!

Thursday, November 24, 2011

Weekend Reflection

The weekend of November 11-12 was obviously a busy and fun weekend for our family, as you can probably tell from the last few posts, and this has led me to a bit of reflection.

There may be something wrong with me, but I didn't shed a tear the entire weekend.  I laughed, I celebrated and even the mourning was with a smile.  I mentioned her to others and we honored her as part of our fundraising team for Hand to Hold. 

I smiled for what she was, for what she could have been and what we dreamed for her.

I smiled as I listened to Chiron laugh for 15 straight minutes to his big brother in the back seat.

I smiled as we had one Preemie of the Year recognized rather than two.

I smiled as Trajan explained to me that he was looking at a cloudset which is when there's a cloud and the color change of the sky with the sun going down is behind it and then proceeded to make up a song about cloudsets.

I smiled as friends remembered us with cards, flowers, comments and just mentioning her name.  I smiled as we celebrated all that he have to be thankful for.  I smiled as I discussed her brief life with a reporter who was wanting to know more about Chiron for a story on the Preemie Power event.

Will I always miss her?  Yes, but I'm to a point of celebrating and I'm grateful for that.

And for all of you.

Someone I only know virtually made this in honor of Aurelia and really made me smile. I think it's the same as when her name was written in the sand, this enhanced my feeling of her "realness".

And I also think it's fitting that I'm setting this to publish on Thanksgiving.  Several people have mentioned Chiron as something I'm thankful for this year, and while they are correct, I'm also thankful for Aurelia's existence.  She was.  She mattered.  And I am thankful.

Wednesday, November 23, 2011

Tastiness and Preemie Superheroes!

Continuing our weekend of fun and service, we met friends at Fonda San Miguel on Sunday for brunch and followed it up with attending the Preemie Power event!

Fonda San Miguel is a fantastic mexican restaurant in town that is also special to us as it is where we had our rehearsal dinner.  They've got a great Sunday brunch, but it's pretty pricey, so we don't go often.  So, when friends who love Fonda San Miguel were in town for the weekend and asked us if we wanted to go to it with them, we jumped at the option.

Our friends were running late, so we got to spend some fun time playing with Paco, the parakeet.  And the boys played with each other.  It was great food, thoroughly enjoyed by everyone.  They even had some corn tortillas that our waiter was able to assure us were wheat/dairy/egg/soy free and so Chiron even got to snack!  He probably would have liked some of the other foods, but we would have needed to get confirmation on allergens and he seemed happy with the tortilla, so we didn't worry about it.

From there, we left and drove around to give Chiron an opportunity to get a nap in before the party.  Filling up on gas, running little errands, more or less making up things just to pass time while he slept.  Then we headed to the Preemie Power Family Celebration!

I had gotten capes made on Etsy.  I had started just wanting a cape for Chiron that complimented the dogtag on his Scrappy Doo costume, but decided Trajan might want a cape of his own and then decided to just order them for all four of us!  Chiron's costume had an SD on it like the dogtag and the other three had X's as we were his X-men (get it, Greek Chi?).

We knew Chiron was one of the finalists for his age group, but we also found out that he had won the Thundering Thurston Award for receiving the most online votes (4,162!) as well as the award for raising the most money in our fundraising campaign. And, he was selected by the judges as the Preemie of the Year in the 0-12 month category!
It was a great time for all of us, with a fun play area that was appropriate to Chiron, bounce castle and slide for Trajan, a balloon artist, music, cake, pinatas and more!  One funny bit is that I actually learned that Chiron had won his division after pretty much everyone else in the room.  They had been announcing the finalists and I got distracted when they announced him with the wrong last name and so was talking to someone and didn't notice that he had won!

Tuesday, November 22, 2011


After the Little Helping Hands service project, we headed out to get a bite to eat and then headed to a charity fundraiser called Touch-a-Truck.

Chiron had a great time sitting in a high chair and eating some shredded mexican chicken at the restaurant before we went to touch the trucks:

Trajan was so excited that eating was harder for him, but he at least ate tortillas and queso.  Not particularly healthy, but sufficient to stave off hunger.

There were so many different kinds of vehicles!  A whole section of military vehicles down from Fort Hood, fire trucks and ambulances, police vehicles, garbage trucks of various types, construction vehicles, a party bus, a limo and more!

Once we had wrapped around to the end, we stopped for Trajan and Paul to have some ice cream and I told Trajan that Chiron wanted to know what his favorite was.  He responded with, "the ice cream truck!"
I talk "for" Chiron to Trajan reasonably often.  Is this weird or do others of you do this as well?

One of the military trucks was a digger type thing (you'd think I'd have the names of construction vehicles down by now, but sadly I don't) and we took a picture of Chiron in the scoop.  I put it on Facebook and a friend captioned it as looking like the soldier had pooped him out, but in a cute way.  See for yourself:

Doesn't he look tiny?

The firetruck was perhaps Trajan's favorite to climb in and he was further amused when he got out and saw that the front had a mustache!

It was a great time and for a good cause as all proceeds went to the Austin Children's Shelter!

Monday, November 21, 2011

Little Helping Hands

Austin has an organization called Little Helping Hands that puts on service projects that preschool and elementary school aged kids can participate in.  It's a great program that I'd heard, but had never coordinated figuring out the pretty competitive registration process.  Then I received an email that Trajan's school was sponsoring a project for the families at the school and knew that we had to do this!

This project was cleaning up a local playground.  This included picking up litter, doing some planting and wiping down the playground equipment.  Trajan and his best friend decided they wanted to wipe down the equipment and so that's what we did.

I also tried Chiron in a hip carry with a pocket sling for the first time and he did great and really enjoyed himself until he passed out.  Then the advantage of the kangaroo carry was obvious as he was then slumped over!

Seeing those pictures drives home that I really did cut off eight inches of hair that Thursday!

Thoughts on cord compressions

So, I got started thinking about cord accidents more by reading a blog post that put the risk of a stillbirth due to a cord accident at 1 in 7 for those who have had one before.  How did I get there?  By the completely normal action of googling the approximate phrase "stillbirth recurrence cord accident."


I'd somehow gotten it into my head from the various doctors that cord accidents were really more or less fluke incidents and not something to really think about recurrence on.  That said, I had been told that if I am ever pregnant again, I would have additional cord monitoring weekly from around 20 weeks including measurements, doppler, and some monitoring of heart rates over a few-minute period, so I probably should have gotten that it was a risk from that. 

I have found myself second guessing was she really a cord accident.  To review the history, we were told at the time of the demise that it was likely that we would never know a cause of death.  We were able to rule out some causes because of having an ultrasound within a day of the death, but there was nothing that gave a clear cause.  Not only that, but we were told that the longer we were able to make it without delivering them, the less likely it was they would be able to identify the cause.  So, delivering almost six weeks later we were not expecting an answer and so were surprised when the neonatal nurse practitioner who attended the birth told us that it was a cord accident and then brought her over and showed us.  It just looked like if you had taken a garden hose and folded it to completely stop the flow.  It was very close to her body on the part of the cord that they left attached to her (longer than what I saw with either of the two boys and so I'm guessing longer than is typical with a live birth). 

My worry is that I was so desperate to have an answer that I just took this.  No, I have no reason in the world to question this NNP's judgement (she proved herself to be one of the most competent over the next few months), but I still do.  When my OB came to talk to us a few hours later, we discussed what there had been and whether this meant that it was unnecessary to do an autopsy and agreed that we had our answer and nothing would come of it.  So, really, I think I should feel comfortable with it being a cord accident, but the image that is forever burned in my head of that white folded cord doesn't seem to match with some of the images I've seen in medical journals.  I think my real reason for doubt is wanting to know how they know that that was the CAUSE of the death and not just something that happened after she died.

Assuming that Aurelia's death was due to a cord accident, this risk of recurrence is enough to probably make me chose to not risk another pregnancy.  It might be different if we didn't have the boys, but taking on that level of risk just doesn't seem fair to them.

In addition to my reading on cord accidents making me question the certainty that this was the cause of death and making me consider the risk of any further pregnancy, it also has me questioning whether I did enough.  On the night of 11/9, I felt such a weird sensation of Jumanji drums and pulling that I went into the perinatologist a day early on 11/10 instead of my scheduled weekly appointment of 11/11.  This was the only time I had called them alarmed.  Having read that fetuses respond to cord compression with fetal jerking and they are less able to do this in multiples pregnancies, should I somehow have recognized this as more significant?  I don't think there is anything that could have been done other than delivering two 24 and change weekers, but I can't stop myself from thinking about it.

I also want to know when and how do fetuses die.  Apparently they can survive five minute complete compressions with no ill effects, so what is necessary to result in death?  Is it frequent recurrence that doesn't allow the fetus to rebuild up resources in their body?  Is it a longer duration?  What makes them go to the state of dead?

There was also a sentence in one of the medical journals that I read which struck me "the important point here is these infants are normal; they are normal, but they are dead."  Not sure why that seems so powerful to me, but it does.

Last rambling thought relates to further pregnancy.  I really think that if the literature and the anecdotal experience of my doctors support the idea that there's a significant risk of recurrence I just wouldn't do it, but if I did, I feel like I would want to know where the balance point is between identifying a potential issue so you know to watch for it and study it and just giving you something to worry about that you can't do anything about.

Monday, November 14, 2011


Round four is apparently the magic number. Chiron is back for his esophagogastroduodenoscopy. Good news is his bloodwork allowed it to actually happen this time. Not only that, but he had a hemoglobin of 12.9! That's the highest we have seen anytime in the last few months. And his prothrombin time was good, I can't remember the number but it was 11-12 seconds with an INR of 1.1!

"Does this gown make my head look big?"

He was a really good sport about being woken up early and brought down here and going through all the pre-op stuff. Two hours of being awake, but not being allowed to eat. He was staying happy in the pre-op room as long as I was walking, bouncing, patting and humming, but cried like a baby when I handed him over to the nurse to carry back.

I think I just heard an announcement at the nurses station that they were finished in OR 2 and moving to recovery.

I find it interesting that he goes through four rooms: a pre-op area, an operating room, recovery level one with just medical staff and then recovery level two with parents.

I'm hanging out in his recovery level two room:

He's still in recovery one, but his surgeon just came by and the scope part of it was gorgeous. Esophagus entirely recovered, nice pyloric opening and just generally looked good.

Almost as cute as ultrasounds, right? ;-).

His GI did say that he wasn't excited about what he weighed in at, but we would wait and see what he weighs next week at his appointment on their scale.

And he's here, so live blogging stops ;-)
- Posted using BlogPress from my iPhone

Friday, November 11, 2011

Remembrance Day

It's amazing how one little comment can change your attitude and realign your relationship with the world.

A good friend moved to the UK after meeting, marrying and loving an amazing man who happened to be from Manchester.  She posted a message on my wall this morning that simply stated: "Did you know that in the UK, today is referred to as "Remembrance Day"?"

Basically the same idea as Veterans Day, but with a different label.  And that label got me thinking.  Mourning, while perhaps valid, doesn't really do anything good for anyone.  Remembering and celebrating just seems so much better.

Remembrance Day also fits with what I've been thinking over the last few days.  I at first thought it was very odd that I've been thinking about this recurrence of certain dates when the due date didn't phase me at all.  I think it's because they are different.  The due date was an arbitrary date.  Now there are clues and reminders that take me back.  From Halloween to Veteran's Day (going with the US name) with the coming of cool air and the time change.  I'm remembering who we were, what we dreamed of and what we experienced.

We return back to the same place around the sun, but I am not the same.

Remembrance to me conveys celebrating the happy, the hopes and the significance that she had.  Because while she may never have breathed, she did impact the world.  So today is a day of celebration to our daughter.  Remembering every single ultrasound resulting in some sort of comment about her beating the heck out of her brother.  Remembering laughing about how she was in a typical singleton positioning in the uterus with her brother showed transverse across the top in a position more typically seen in triplet pregnancies.  Remembering the dreams and hopes that we dreamed for her.

We sent popcorn to the antepartum and L&D part of the hospital today as part of our remembrance.  It's amazing how long it took me to decide what to say on the quick little card.  It's easy with the NICU because it's really just about Chiron, but this group of people includes those who cared for Aurelia and all of us while they were still in utero.

I went simply with "thank you for the care you showed Aurelia, Chiron, Trajan, Paul and myself during our time there" and signed it.

So if you have a moment this Remembrance Day, take a second to think of our daughter and join me in a smile for her.  I'm glad she existed.

Thursday, November 10, 2011

The boy behind the baby

In the last week or so, the boy that is going to replace the baby that we have known as Chiron has started to be be occasionally visible.  He's still definitely a baby, but the glimpses of the boy are coming more and more often.

This was his first time in a grocery cart.  And yes, he managed to maintain this level of joy for more than a full hour and wanted to stay longer!

He's definitely still a little guy, 15.5 pounds or about 7 kilograms, but he is getting much better at control of his movements, gross and fine.

He's also getting better at eating.  He is gagging and vomiting a lower percentage of the time now.  Despite this improvement, they decide to schedule a esophagogastroduodenoscopy for Monday.  The reason behind it is that he is still underweight (failure to thrive is a mean sounding term), has had some weird absorption issues show up in his blood and has had the gagging and vomiting issue.  I believe we aren't expecting to turn up anything that will change anything we are doing.  But in the case that something did show up, what "it" would be is something that we want to know.  Main negative is it does require general anaesthesia.

Right now, I dub a meal to be done when I run out of towels and bibs from catching vomit, but hopefully this will soon be a thing of the past!

We are loving the hints of the boy that are coming out and can't wait to see more as he continues to develop and master new skills! He next goes to the developmental pediatrician at the one-year mark where we are hoping he will be closer to his calendar age than his adjusted age in terms of milestones.  A couple weeks ago when we went he was about halfway between them on most dimensions.

Serious Progress, huh?

Wednesday, November 9, 2011

Truths I have learned in the last year:

There are no right words.  But no words is definitely wrong.  Just an “I’m sorry” or “that sucks (perhaps with a bit of profanity thrown in)” goes a long way to making the individual still feel connected to the world.

Perhaps the worst aspect of grief or catastrophe is the sensation of being alone in the experience.  The power of making a connection with someone else who has experienced something similar really amazed me.

Joy and sorrow can go completely hand in hand.  I found a flip camera recently and there were some videos from the NICU in Chiron’s first week were Paul and I are laughing and joking.  In retrospect, it amazes me that we experienced anything other than anxiety, grief or just plain being overwhelmed.  But in the moment, the entire range of emotions can occur.

Macabre humor can be one of the strongest weapons in the arsenal to deal and continue functioning.

People are greater and stronger than I knew.  The strength and compassion of our friends and family in supporting us has floored us and continues to do so.  Humanity and our connections to each other I now am convinced is the main source of our strength as a species.

There’s a catch-22 in the loss of a child: others don’t want to bring them up because they fear it will make you sad, but it is much easier to discuss them when the other party is the one who “remembers” their existence.  I think this was particularly pronounced in my case as I have had so much trouble with vocalizing her actual name instead of just using pronouns.  Did it right there, see?  Aurelia.

There’s an Elizabeth Edwards quotation from a speech she gave in Cleveland that I think communicates the truth about discussing a dead child amazingly well: “If you know someone who has lost a child, and you’re afraid to mention them because you think you might make them sad by reminding them that they died—you’re not reminding them.  They don’t forget they died.  What you’re reminding them of is that you remembered that they lived, and … that is a great gift.”  In our case, Aurelia never lived, but I still think this is true.  And based on some friends I have known with miscarriages, I think it remains true there as well.

On the Elizabeth Edwards train of thought, I think she is on to something with her quote on resilience.  It was going around the internet about the time the twins were born and stuck with me: “Resilience is accepting your new reality, even if it’s less good than the one you had before.  You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”  I believe this is what we have done and our family is stronger for it.  I didn’t notice it at the time, but my philosophy I wrote about really is the same idea as what she said.

Someone connecting with what you are thinking can be incredibly powerful.  When Chiron was born, the most common statement was "Congratulations!," even from the nurses in the antepartum area.  While based on the very first truth, say some words, this was appreciated, it always felt a little awkward to me.  Were they congratulating me for delivering my son over ten weeks early?  This seemed odd to me.  One person said the exact opposite, "I'm sorry."  And she said this in the context of Chiron's birth, and I remember being so struck by her ability to acknowledge what I was actually feeling.  I don't think it is chance that this is a friend who has struggled with infertility.

The effect of someone including your dead child's existence as a part of their universe is powerful.  I'm pretty sure the passing comments, texts and messages that acknowledge Aurelia either directly or indirectly, through recognition that I have been pregnant with a girl child or with twins for example were made with no idea how much they could make me smile.  Thank you.

There's a semi-secret community of people who have lost children.  And whether through miscarriage, stillbirth or death as a child or an adult, everyone apparently belongs and that is nice.

There is no way to quantify grief.  I still try to think about whether one type of loss is better or worse than another, but I should know by now that you just can't rank these things.

Labels will always be hard.  The one in particular that I really have trouble with is whether I'm cheating somehow to count Aurelia as a stillborn child.  The strictest definition typically seen is at least 24 weeks and 500 grams.  She died just past 24 weeks and was born at 30 weeks.  When she was born, she only weighed 397 grams (though for some reason, this is the only number I don't feel completely certain on).  However, she weighed less because she had been dead for six weeks than she did at the time of death.  So, I think she probably does count.  And I know multiple babies who were born at the gestation she died who are alive and even developmentally normal.  I just feel like I'm cheating calling her a stillborn next to those who deliver full-term stillborn children.

The mind of a child enhances existence, even the hard things.  Trajan's understanding and processing of the last year has strengthened me and helped me in my own processing.  He and his mind remain the thing in the world that most amazes me (just starting to see this in Chiron as well). 

I am blessed.  And lucky.

Tuesday, November 8, 2011

Day of Significance

I've been trying to write a post and it's just not happening.  I'm not sure why I want to write it, because I really already did, but I still feel like I need to write something.

I guess the difference is that was about what I think and right now I'm thinking more about everyone else.  Our friends and our family.  Our network who has been amazing throughout the last year.  I guess I just wish that there was a day that I knew that she would cross their minds.  A day of some significance.  But I don't expect there would.

The typical choice for a stillborn child is their birthday, the day that they gained a physical independent presence in the world.  But that is also the day that Chiron was born.  And it may not seem fair, but that day is more about him and the start of his journey.  And that's even to me who carried both of them.  I really can't expect anyone to think of her on their birthday.  And is it really even her birthday?  Technically, I don't think she was born.  We didn't get a birth certificate.  Medically, I think she was just removed.

And it's not just because it is also Chiron's birthday that this date doesn't make sense.  Perhaps even more important is the fact that she had been dead for almost six weeks.  We had all come to terms with a reality in which she was not living by then.  All that remained were our physical goodbyes.

I really think that November 11 is the day that will always be specially hers in my mind.  But as this is essentially a construct of my own mind, it will not have significance to others.  Why do I say it's a construct?  Because we know she was alive the afternoon of November 10 and we know she was dead by 8:00 am November 12.  The perinatologist made a guesstimate that it had probably been the night before and so I've run with November 11.  Since I've since read that fatalities due to cord compressions most likely occur during 2-5 am, it seems likely it was actually November 12.  But I'm sticking with November 11 in my mind regardless.

Facebook doesn't give you a slot to input "date I delusionally credit as the anniversary of the death of my stillborn daughter" though.

So, what is the purpose of this post?  I really don't know.  I guess it's mainly to sort out in my own mind that I haven't worked through everything yet.  I find myself thinking that I've really come to terms with everything, but this is not true.  And probably never will be.

And the real reason I'm writing this?  Probably that I need to send something out there to the universe every so often as a sanity check to make sure that she was not just a figment of my imagination.  That she existed.  That she was Heart.  That she abused her brother in every ultrasound we ever saw.  That her name was Aurelia.  That she had a middle name despite the fact that I was asked what it was for the first time within the last couple weeks.

All that long ramble aside, I have gotten amazing evidence of her significance in the last few weeks.  In addition to the Scrappy Doo Preemie super hero entry, which he came in first place and is going to judging on (!), we also created a fundraising team for Hand to Hold based on both Chiron and Aurelia,  We did share this with a few people and I stuck it on facebook twice, but we really didn't work to try to get people to support them.  We just made it available.  And as you can see if you clickthrough, people were amazing.  The number of separate family units that added their resources to ours has floored me. So, while there may not be a certain date that they all will think of her, I know there are dozens of people out there who have Aurelia cross their minds at times.  And that makes me smile (and perhaps cry).

Heart & Eggplant

Monday, November 7, 2011

EEGs for fun!

Trajan has now managed to get not one, but two EEGs in his life despite probably never needing any.

The first time is because one of his teachers at day care maintained that he had had a three-minute seizure prior to six months.  This earns you an immediate trip to the neurologist (even if you really don't think she makes sense/you believe her) and an EEG.  So we went to the neurologist a day after he turned six months:

At this age, they have to sleep during it, so we had kept him up for a few hours before hand.  He was a really good sport about it:

The results at this time were normal and the doctor said that he wouldn't say she was lying, but that perhaps she confused the jerkiness that all babies can have with a seizure.  It's something called myoclonus if I remember right.  So, he was released from the neurologist!

Then, last spring we started having some behavior problems with him. We were in the pediatrician's office when one occurred and she thought it looked more like a prefrontal cortex seizure or some term like that and so referred us back to the neurologist.  It takes a long time to get into the neurologist, even having seen them before, so it took six months until we finally got into our appointment last week.  This time he got to do the entire thing awake. 

He was really, really good throughout the entire thing.  Still when we was supposed to be, tolerant through the strobe lights and even hyperventilated for us for the three solid minutes as they requested.

The results this time?  Another normal EEG.  And after waiting six months to get in, the doctor got called away to an emergency and so we weren't able to see him.  The results were normal enough that the PA and I agreed that we didn't need to reschedule him to see the doctor at this time, but that since the description the pediatrician had sent sounded so much like seizure activity, to call her if the episodes resume and they would work him in at lunch almost immediately.

Fun times with EEGs!
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Friday, November 4, 2011

Dentist and Work

Chiron had his first dentist appointment on Thursday.  It was at 9:30, so I was going to drop him off, go to work for an hour, pick him back up and then go when a coworker mentioned she hadn't gotten to see him in a while and so I decided just to bring him in with me.

He had a great time playing and meeting folks:

Origami King Tut Mask is so tasty!
And yes, that's my desk that is completely overrun wtih papers.

I did find one thing particularly amusing.  There was a professional exam being administered in our office and the signs warning people in the area to be quiet had not gotten put up and so our receptionist asked if I could do it when I was on my way out.  It for some reason amused the heck out of me that she was sending a baby to put up signs telling people to be quiet including directly on the door of the conference room where the test was taking place.  Of course, Chiron is so easy going that I wasn't really worried.  He didn't make noise other than babbling the whole hour and change we were in the office.  It was just the premise that tickled my funny bone.

Then is was off to the dentist!  He was tucked in the sling and the women in the front office all came around to look at him, which earned them bonus points in my book for appreciating his awesomeness.

You might be asking why I was at the dentist with a 10-month-old.  Well, last winter when I was in with Trajan, I happened to mention that he had a brother now who was a preemie.  The dentist, who we love, said that there can be some issues with the enamel on the teeth of preemies and so he likes to see them by one year to get everyone on the same page, establish good habits and just to get a baseline on their mouths. 

He really wasn't as starled/distressed as that picture looks like, but I love the idea of, "you're going to do what to my tooth??!"

He actually was amazing about it.  Even got his tooth cleaned!

A couple bits of good news.  First, we apparently have good oral hygiene habits, yeah!  And two, I had thought that the enamel issues would be both baby and adult teeth, but he said that it is more often confined to just the baby teeth and the latter ones at that.

He goes back in six months! 

Thursday, November 3, 2011

Nut Whining..

Trajan's school has always had a no-peanut policy. It was the only school-wide allergy policy and this made some sense as there are a handful of kids across several grades who have varying degrees of peanut allergies.  All other allergies were handled at the classroom level and according to the severity of the allergy, the age of the kids and the responsibility of the kid with the allergies.  Still seems reasonable. 

Then they decided this year to go nut-free.  A little irritating, but since there is a reasonable frequency of cross-reactivity between tree nuts, I didn't whine at all (well, or just to Paul).

I have an anaphylactic food allergy to cinnamon and so I get the significance of food allergies.  I also experienced Trajan's allergic enterocolitis/protein intolerance and so understand the challenges of reading labels.  If an allergy is severe enough that being in a room with it can cause a reaction, steps should be taken to ensure the safety of that child.  The total number of food allergies in any one classroom, or even larger groups that eat together, shouldn't impose too significant of a restriction on families for planning snacks and lunch.

I definitely think that it is important to educate the child in the importance of being careful about what they ingest.  This is possible from a very young age.  I have a friend with a child who had PKU who definitely had this concept down cold by the time he was two.  That said, particularly with preschool-aged kids, being a little extra safe and eliminating the likelihood of their coming across the food as well as educating them about it seems wise.

I'm sure it's obvious by now that there is something that I do object to.  And there is.  Trajan came home the other day and said that he had gotten in trouble for having a sunflower seed butter sandwich and that no butters were allowed.  No sunflower, no pumpkin, no soy, no sesame, no nothing.  Seriously?  And this is with no kid in the entire school having an allergy.  The best answer I've been able to get is that butters seem to be more likely to cause allergies.  I've got an email into someone who I hope will give me an official answer, but so far it sounds like they really are saying no butters.

Taking sunflower seed butter as the specific example, since it is the one we were using, there is definitely a risk of a food allergy, but it is relatively low.  If they were to not allow all foods with this level of allergy, they would also need to put a ban on cinnamon, celery and tomatoes. 

Oh, and we are careful to purchase a sunflower seed butter that is not produced on machines that also produce tree nut products.

Is it a litigious society?  It is laziness and it's easier to just ban everything?  I'm thinking it is the latter because Trajan actually said that at first the aide just told him that he wasn't allowed to have a sandwich.

So, am I being unreasonable?  Do you think that a blanket ban on all "butters" as well as any product containing a tree nut is the best policy?  Note, there are kids with non-tree nut allergies whose allergens are allowed in the school such as strawberries and melons.

There are also a number of children of vegetarian and vegan households at the school, so this policy seems like it would definitely negatively impact the ability to get protein into their snacks and lunches.

Whining completed.

Unrelated picture except for the fact that Chiron is wearing food and the topic included food.  Also, we could feed Chiron the sunflower seed butter and he's not allowed to have any dairy, soy, wheat, eggs, tree nuts of any type, fish, shellfish or red meat.

Tuesday, November 1, 2011

Halloween Bits and Pieces

The day started with the classic tale of a boy, his fish and his possessed dog.

This was the first year that Trajan really 100% got the idea of Trick or Treating.  Knew what he was supposed to do and say and what would happen.

Trajan, Chiron and I went down to a neighborhood Halloween party while Paul cleaned up from dinner.  Chiron was charming as Scrappy Doo. 

Trajan, well Trajan's costume was another issue.  He had asked weeks ago (while we were in a Halloween store) to be Super Why.  Once we figured out who that was (hint: he's a super reader), we said sure.  Amazon had a costume and so we ordered.  However, Amazon only had the 3t-4t in their direct shipping.  There was a 4-6 that would be fulfilled by another shipper.  Meant an extra $3.99, but seemed a reasonable price to be more likely to fit. Fast forward two weeks and middle of last week I suddenly realized it hadn't come.  At first they said they would get it by 10/31 (too late for several events) and then they eventually just said they weren't shipping it.  So, I got a Super Why play kit consisting of a mask, cape and wand over-nighted.  

He wore it over more appropriate colors for the first few events, but by last night he was just a kid wearing a small cape with a mask on his forehead over jeans and a t-shirt.

First fun fact: I opted to pick the path that involved climbing up and down hills to access many of the houses.  This may have partially contributed to him requesting a rest and sitting on a curb three times.  In the exact case of the picture above, he sat down and started talking to me about the moon and how he could still see "the darkness of the rest of the moon."

Second fun fact:  I don't know if it's a thing here or if it happens everywhere, but there are a number of Trick or Treaters who get driven into our neighborhood to Trick or Treat.  We came across a particular large group of them that Trajan requested to follow.  He got right in the middle of them and joined with them, talking in Spanish.  And in line with the theme of the night, the discussion seemed to mainly be about la luna.  Was fun seeing him just blend in, Spanish and all.

Third fun fact:  We came across a house where there seemed to be a large gathering of people who were early 20's and Trajan for reasons known only to him decided to say, "Trick or Treat, Man" to them.  Produced great jocularity.  And then I may have made a joke about two of them being in costume as intramural basketball players, so Trajan and I now have new friends.

Fourth fun fact: Trajan asked me why I wasn't Trick or Treating.  I said something to the effect of being too old and so they wouldn't give me any.  His response, "so, the kids have to get the candy for the moms and dads?"  Insightful kid!

Fifth fun fact:  He was great about having to go home and only eating two pieces, but I was amused when I heard him go into the bathroom, exclaim "It's Halloween!" and then pee.  Not sure why this tickled my funny bone, but it did.

Sixth fun fact: There was a house that has a tree growing over the pathway and he battled through it in the center instead of following some stepping stones around.

Seventh fun fact: As he went to sleep he declared "today, I need privacy, because I messed it up again."  I had no clue what that meant, but I resisted investigating when he closed his door.  And for that I'm proud.  Still don't know what it was about... It came on the tale of "because I'm four now, not three, so I do new things now.  I did puppet shows because I was three, but I changed years and am four now and so I do the game of school."  If you know what that means, feel free to explain it to me!

Eighth fun fact:  I let him pick two pieces of the candy to eat before bed and one he chose was Sour Patch Kids.  His expression:

 Ninth fun fact: he actually slept under his sheet and blanket last night, so must have been a serious adventure:
Yup, that's his too-small cape at the foot of the bed.  He also didn't bother to bury himself in babies, so definitely tired.

Tenth fun fact: Perhaps my new favorite Trajanism.  On being told that we needed to head home because of something to the effect of it being the middle of the night: "It's not the middle of the night, it's the thirds of the night!"

Chiron was sleeping and thus doesn't really appear in these tidbits, so here is a bonus of him wearing a hat from his grandparents' mental asylum costumes.