We are still alive!

I've been busy and mainly using phone as computer outside of the office, so I really haven't updated.  A couple of you who are commenters/readers have found me on Facebook or emailed me (see right bar) and had me find you on Facebook and that is actually probably the best bet for right now since I don't know when I'll get back to updating in a timely fashion...

I'm sure there are lots of cute pictures and interesting anecdotes in the last three months, but it seems likey I'll never really update them.

Brief updates:

Trajan started kindergarten at the end of August at our local neighorhood school.  He has a great teacher that it turned out we already know as her son was in Chiron's infant class.  He's had some behavioral issues and adjustments, but is doing really well academically.  He has been the most amazing brother that I can conceive of.  The devotion and love he shows his siblings is absolutely amazing.  It is definitely worth getting myself to take the time to come here and write a real post to document some of it so that I never forget how he has been with all of them. 

Poppins quit, by text, when the girls were a couple weeks old for reasons relating to her being pregnant, Medicare, WIC and other factors that aren't worth my time to bring up.  We were trying to find a quick nanny from an agency, but my mother volunteered to stay with the girls for August and September rather than have us leave newborns with someone that we wouldn't have the time to really vet.  That was great and really awesome for them.   Chiron started back at the daycare he was at before on August 1 and the girls joined him at the start of October.  Seems to be going pretty well.

Chiron is really blossoming into himself and starting to communicate with more words in the last few months.  His brother is still his favorite person in the world and it is really cool watching Chiron imitate Trajan (well, at least in most things).  Yesterday, I was running late and so I had Paul go pick up Trajan and I just went and got the littles.  Normally I pick up Trajan first and he helps me pick them up including rocking and kissing each sister as we put our shoes back on in the front room.  Chiron did this yesterday, I guess becuase Trajan wasn't there! 

The girls are doing well.  At the beginning of September, we got Ari in for a swallow study after the gastroenterologist agreed with me that something wasn't right about how she swallows and we found that she was aspirating with each swallow.  So she is on thickened expressed milk and should be in speech therapy, but getting all the ducks in a row with the hospital has been insane.  The GI nurse says that I should hear with her first appointment by Thursday at the latest, but since we have been working at this for a month, I'll believe it when I hear it.  Allie is following in the boys fine footsteps with extremely severe reflux, but so far no indicators of either milk soy protein intolerance or congenital lactase deficiency.

I was talking to a friend earlier today and realized how much has happened in such a short period of time.  Two years ago today, I was almost 20 weeks pregnant with Chiron and Aurelia with no idea of any problems on the horizon.  Since then, either Chiron or I has been in the hospital for six months and three children have been added to our family.

I still think of Aurelia often.  She is real to me even though she isn't to the rest of the world.  I held her in my arms, she was formed and perfect and complete.  She may have never breathed a breath, but she still was to me.  I don't know if it should matter when she died, but it does for some reason in my head.  She was very potentially viable had she been born instead of died on November 11, 2011.

That said, I think I've come much more to terms with her life and death.  I can mention her without sounding as awkward and don't avoid her when her inclusion makes an answer stronger or better.  I have had some odd thoughts relating to her and the girls.  They look so much alike that it leaves my wondering more of how she would have looked.  You may have noticed that all of their names start with an A.  Aletheia was actually the second name we had identified before we knew Chiron and Aurelia's genders and after a lot of discussion and research, I came back to it this time.  At that point Paul suggested that we make both of their names start with an A.  So all three girls are A's, and I like this.  I still mourn not getting to use and hear Aurelia's name though independently of mourning her, as odd as that may sound.

I've come to the conclusion that you should never make a comment on someone's gravid status, their children's spacing or their genders.  Because I can not count the number of times someone has volunteered that our family is perfect since we have two boys and two girls.

Paul is doing well.  He's always been good, but having the two littles has really resulted in him stepping up to amazing.  He gets the girls down each night while I put the boys down and actually takes and drops off all three littles at daycare on his own.  And he keeps us all fed in addition to all the normal household tasks of laundry, dishes and cleaning.  I've been overwhelmed a couple times by the situation in which I find myself that is my life, but he's plugged through like a pro this whole time.  I'm lucky and blessed and should probably remember to tell him that more often.  And to find the time to just sit and listen and talk instead of feeling like I always need to be running and doing.

Thank you all for caring about me and my whole family.  Here's a couple random shots:

Very random assortment, but I figure I'm unlikely to ever go fill in unless I get smart and use my Facebook to provide structure, so here's for now!

Oh, and I figure since so much of my life is filled with breastmilk that I should add something here.  Ari went up to the NICU for apnea which was probably related to her swallowing disorder, so she had a slower start to breast feeding, but I had both of them feeding pretty well as long as I tandemed at the time Ari was moved to the thickened milk.  Now all of her milk has to be expressed so it can be thickened.  And these girls drink a ton.  I was having to thaw some for a bit a couple weeks ago, but I think I'm back to keeping up with them.  Since Allie direct feeds in the evenings and nights, it's hard to know exactly how much they are going through, but it is dang close to two liters a day if it's not over. Part of my stress came because I gave away the vast majority of our freezer stash early on because until Ari stopped direct feeding I was staying well ahead of them.  But things are looking alright now.

Damn, fun with tonsils and adenoids

So, I was figuring I'd write a quick little post of the boys' getting haircuts yesterday, but instead it's surgery.  Yes, for my kid who has had two fevers in his life and one stomach bug, because apparently life is too boring :-).

I'd made him an appointment with the ENT because his dentist had recommended that we have him evaluated by an ENT due to his mouth breathing, growing overbite and large tonsils.  I really kind of expected the ENT to possibly scoff at us a little for being there and at most recommend a wait and see approach.  Nope, not at all.  He was in the room maybe three minutes and had asked Trajan some questions, looked in his throat and observed him and then asked me if I wanted the bad news then or in a few minutes. I voted for then and he said, "he's going to need both the adenoids and the tonsils out."

Apparently he pretty clearly has some obstruction due to his lymphatic tissue.  The ENT said that it's not at all the size of the tonsils that makes him go to removal, but more the mouth breathing that is pretty much obligate.  Apparently some notes in his chart from the allergist also supported the idea.  He said that if we wanted, we could first schedule him for an overnight sleep study to document that he is having breathing events, but that he could pretty much guarantee that with Trajan a study would find episodes and that sleep studies are not a fun walk in the park either.

I'd already checked in with our primary and she sounded like removing them could be reasonable and did support that the ENT is a good one, so I figure let's do it.

He sent the nurse in to schedule it and her first comment was, "looking at you, I'm thinking we need to schedule this sooner or later.  Do you have a couple weeks left?"  Seriously woman, I'm 22 weeks.  I realize I'm a bit large for 22 weeks, but I sure as heck don't look like 37 or anything!  I for some reason have harsher standards for medical professionals.  However, I did agree that sooner is better than later.  Both because our world will get more crazy and because the younger you are, the easier this procedure is supposed to be.  But he's ringbearing in a wedding on April 21, so we scheduled for April 26 as they apparently only do them on Thursdays.

It's a one-night stay and then lots of fun with fluids and soft things!  They said that some kids are back out playing by the time they are discharged, but some take as long as 7-10 days.  He has the week of the surgery off, so will hopefully just miss part of the next week of school.  We are also hopeful that he will be better enough by the next the week that he may still need to lounge and "take it easy" (i'm translating to be allowed to watch unlimited tv and drink and eat things with lots of sugar), but will be good enough that he'll be okay staying with Poppins during the day. 

The ENT said that most kids who present like him become much happier and are much better behavior-wise after the procedure as they aren't getting particularly restful sleep.  As he's a generally pretty good and easy kid, I'm thinking this could make him absurdly easy if it's true! ;-)  That said, he does definitely have his moments (Mr. Hyde) where it's like he's a completely different kid.  It's probably being overly optimistic to think that this will help that, but a girl can dream, right?

The ENT also said that at this age no myofunctional or speech therapy will be necessary.  He should simply revert to breathing through his nose as soon as the swelling has gone down since that is the body's "natural way".  He mentioned the same thing the dentist did about this making oral surgery as a teen less likely and having been through that fun of having both jaws broken and being in the hospital five or six days, I think if there's a CHANCE this will allow him to escape that, it's worth it.  I also still have no feeling in my chin or lower lip, so more reason to avoid that much more substantial surgery.

He sort of knows it is coming, but we will need to definitely have a discussion with him to make sure he knows what to expect.  I'm thinking I can couple it with a special grocery trip to pick out things to eat and drink post-surgery.  Any other tips, anyone?

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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Validation

We recently have been having some behavior problems with Trajan. Called the pediatrician to ask about it and maybe a referral for play therapy or something and they said it was developmentally normal. Called the pediatrician again after a couple months and said no, we really need to do something and they had us in for an appointment. She said she wasn't seeing any red flags, but almost begrudgingly gave us a referral to play therapy. Went to play therapy and after a few sessions she said we might be seeing some developing ADHD behavior, but he really didn't need more play therapy. She would write a letter at the start of the school year with some tips for helping him.

Called the pediatrician to see if we should see anyone else for some guidance on the possible ADHD front (the play therapist had recommended a psychologist for evaluation and since I was more familiar with behavioral pediatricians, thought I would ask his normal pediatrician). They scheduled us for an appointment.

So, so far, everyone has been pretty much indulging us, but have seemed to think we were just seeing a problem where there wasn't one (despite reporting issues in multiple settings: home, school, gymnastics).  Not quite patronizing, but the attitude seemed to be we were just expecting too much.

Is validation the right word? I don't know, but the appointment was yesterday and we didn't get any recommendations for a path or even get past his infant history (his doctor is on maternity leave and so were catching the other doctor up since she's only ever seen Chiron. And yes, the theme of the year is doctors on maternity leave.). Why did we not get past this?

My arm immediately after

My arm this morning

He had an episode. Went from this funny, sweet boy explaining the blood pressure cuff and where his heart was to the nurse to this non-verbal, grunting, hitting overwrought thing. 

The pediatrician was great about it. Talked some as I tried to work him though it, took notes and tried to help. We stopped trying to talk about anything and instead said she would call me. He didn't want to leave the room. He didn't want to get in the car. He didn't want to go for a walk. He indicated with his head that he was not mad. That he was not sad. I asked him if he wanted to go see TK (one of the front office staff). I don't know why, but this worked. Likely was just timing. He stood up, walked out and by the time he walked the twenty yards to the water jug was perfectly fine. Smiling and laughing with a nurse while going back to restock the sticker basket.

He was fine. I took him to run an errand with me to have a pump tested (it tests fine, but still isn't working for me, but that's anther story.) Helped pick up his brother. Ate dinner. Got ready for bed. Went to sleep. All while being a sweet, communicative helpful boy.

The pediatrician said she would call me so we could discuss more of what he is doing, what the path is and really what is going on.  She did ask that we try to catch one on video if it is at all possible (recognizing that they aren't that frequent, but saying a cell phone video would be fine), because it is really hard to convey the extent of what was going on.  Similarly, she was really glad that she got to see it.  She said that she actually thought the first step might be the neurologist rather than either a psychologist or behavioral/developmental pediatrician.  We are supposed to pay particular attention to the correlation of nose bleeds with any of these behaviors.  She said she would write up a note and send it to the play therapist and the neurologist as well.

She hasn't called me yet, but I do feel like we are on a path to help him.  And that is good, because this has to be hardest on him.

I just realized I never really wrote a description of what he was doing.  This is hard for several reasons.  First off, some deficits in me.  I am not a very visual person and don't store information about how things looked.  Second, my memory seems to be short for negative events (Paul says this is a feature!).  Third, I was trying to help him and deal with it while still communicating with the pediatrician.  But here's my best attempt.  With no trigger, he started yelling.  Not words, but sounds.  Short, staccato-type noises without language in them.  Flailing and hitting and perhaps best described as a look of intent as he appears to set out with the goal of causing harm.  Of scratching, hitting, slamming, headbutting, whatever necessary to lash out in what appears to be rage.  There is crying throughout and blood running out of what I think was his left nostril.  Wrapping arms around him to hold him against the rage just makes him appear to add frustration to the rage.  Ignoring repeated hitting doesn't seem to be noticed by him.  He doesn't seem to have awareness or respond to his surroundings or the doctor or anything I say.  He seems to calm down.  I crouch in front of him as he seems like he may be able to communicate.  He doesn't lash out.  He doesn't attempt to hit or kick.  He just sits there befuddled, crying.  He doesn't want to leave the room.  Then suddenly he nods to the idea of going and seeing TK.  He reaches out and takes me hand, picks up his water cup (which had gotten knocked over, the doctor tells me to not worry about the spilled water and just leave it) and we walk into the hall.  He looks up, smiles and walks to the water jug and refills his cup.  Then he's the laughing, fun boy.

I didn't get a picture of it, but he also raked his own arm with what I assume was a nail.  And while we were standing at the front desk, I noticed red up and down my arm.

On the question of trigger, I say there was no trigger because we really couldn't identify one.  The best I could come up with is we were talking about him, but as the pediatrician pointed out, we were talking about his jaundice as a baby, not really something that should upset him.  The only behavior we had gotten into was to praise him for having stayed in the green (behavior system at school) for both of the last two days and getting a special note the day before complementing his behavior!

I'm not sure why I'm writing this, except perhaps to document it.  I can not imagine what it must be like to be inside his mind at the time.  The pediatrician mentioned the idea of prefrontal cortex seizures.  Whether it's medical, psychological, behavioral or even produced by us as parents, I really hope this is a good step towards us finding a path where we can help him so he doesn't have to experience this.

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Genetic Gift or DUH!

Trajan earned a double parent-teacher conference for the last trimester of the year.  In my mind it was two because it was split into half-he's doing awesome academically and half-behavior is more of an issue.  His report card had a similar theme with mostly E's (excellent) with the occasional S (satisfactory) in the academic things with a mix of S's and P's (in progress) for behavior.  He was promoted to the next grade, but we were left wanting to help him to make it easier anyway we could.

While the school didn't make any sort of treatment necessary, we were of the opinion that if there was anything we could do to make life easier on him, we should look into doing it.  Yes, it is highly likely that he would work through most of these issues in the next few months on his own anyway.  Yes, they are all within the realm of normal development.  But no, I don't like my kid being hurt.  He's sensitive.  He knows that there are some kids who won't sit next to him because they say he's a fighter.  He knows he exasperates his teachers and parents and relatives at times.  He's smart, he knows these things.

So, we saw the pediatrician who referred us to a psychologist (i think that's the right one) for some play therapy.  Get this, the doctor's name? Dr. Suess. Can't make that up! 

We went in for the first discussion/evaluation session yesterday. 

Trajan seemed to like her and enjoyed talking to her (hanging on the side of her chair when he came to talk to her like he'd known her for ages).  She had legos and scissors, so he's pretty convinced she's good. 

45 minutes into the discussion she'd tied together the things we were saying to conclude that while we were seeing his problems as impulse control, they were really more based on language/communication or lack thereof.  When she said this, it made complete sense.  He really doesn't verbalize emotions very often.  In fact, I can only think of one time.  We were talking about that and some possible approaches to take when I happened to say something in passing about how I'm not medicated right now because of the whole breastfeeding. 

You could almost see her mind race across her face and she declared, "oh, you have ADHD.  Everything clicks! This isn't a developmental problem or anything more than some early signs of ADHD." 

She laughed and commented on how this made my understanding of Trajan more than Paul does make complete sense and also cleared up why some events had happened.  He's not even four yet, so it's not really a diagnosis of ADD, with or without the H, but it does give some insight into thinking about how to handle him.

We are going back next week and she's going to do more of a session with him and then we are going to discuss whether we want to continue doing sessions to work on improving coping mechanisms or if we are going to take more of a hands-off approach for now but with an open mind towards ADD kind of things.

She recommended that we add more rewards-based things into his life and we started this last night with bed time.  He goes to bed pretty well, but there's some yelling or crying that normally goes down.  For this first week, each day he can earn a truck if he's good with bedtime ritual and going to sleep. He pulled it off last night.  Then we can either drop the reward frequency or add more behaviors (like getting himself dressed in the morning). 

So, duh!