Monday, June 16, 2014

Reflections on my first Father's Day

20140523 Cellpic-First family 2River's now been with us for a full 46 days, and yesterday was my very first Father's day. giving me cause to stop and reflect on what has already gone by so fast, and what might be yet to come.  Regrettably, we didn't get a chance to celebrate yesterday due to the fact that Eden is still recovering from her hospitalization due to a deep vein thrombosis that had developed in her left leg, presumably due to her relatively recent C-section.  She's doing all right now, or at least closer to all right, but the whole event was just completely screwed up by almost all of the medical staff involved, causing her to have almost two weeks of steadily increasing pain and dizziness that would have been completely unnecessary if a correct diagnosis had been given the first time we were in the ER, or if anyone along the way had actually listened to our fears and acknowledged how intense her pain was.  Add to that the fact that the advice given to us by the medical professionals involved was actually horribly dangerous with a DVT (affected limbs should not be massaged, nor should she have engaged in significant exercise as a portion of the clot might have broken off and caused a pulmonary embolism or an aneurism) and it just has me completely at a loss.

We're completely flummoxed by the whole thing, but we've decided to look into changing Eden and River's healthcare to another facility once she's recovered, because this is far from the only problem we've had with them, although it is surely the most serious thus far, and we don't want to see how much worse they can do.  Her actual family physician seems competent enough, but is rarely available due to being on call for multiple deliveries most times, and the other doctors and support staff seem absolutely clueless at best, and seriously dangerous, at worst.

Enough angst on that subject; the pain is subsiding, slowly, and her mobility is increasing incrementally - she'll have to be on blood thinners for the next half year, but hopefully will come out of this without long term effects.

20140527 Cellpic-Hanging with Grandma Byram 2We were due to celebrate by going out with both sets of grandparents yesterday, and would have been able to have my brother, Tim, meet his niece for the first time, but we decided that rescheduling was simply the best option, and it should just mean that we get together a bit further down the road.  We don't often get to have both halves of the clan meet, but its always a good time when it happens - most years we've at least been able to pull together Thanksgiving, and hopefully will be able to do so again this year (have I mentioned that this is my very favorite meal of the year?) My mother got to come up with a friend last month and spend a few hours just holding her, and I did get the chance to make a very quick run down to Philomath for time with Dad, but she's already grown so much since then.

20140612 Cellpic-Viking times 4It's incredible to me that we've had nearly 7 weeks already with River in our lives, and yet so much has already happened, and changed.  I've always had trouble relating to very young kids, as I just haven't been able to see any signs of pre-sentience for the first few years, but that's definitely not the case with River.  Obviously I have had a lot more time to observe her, and might have felt differently if I'd had similar opportunities with others, but it's hard to state for certain, as I'm hopelessly biased of course. I can't wait for the next few steps towards crawling, vocalizing with a variety of sounds, and having a slightly longer attention span. And of course, there's another big change that I can't wait for: sleeping through the night!.

20140616 Cellpic-Midnight graspIts absolutely fascinating to see her evolve, just bit by bit, every day.  Yesterday was a bit of a breakthrough in that respect; she's starting to figure out what hands are for! She first showed this while I was changing her out of PJs that she'd spit up on - I picked her up after getting her in the new set and realized that her momentum felt kind of funny. Looked down, and she had an iron grip on her pacifier... which was still tethered to her previous outfit via a kind of clip on band, making a pretty decently heavy pendulum with the amount of soakage that she'd accomplished. Kept holding on for a good 30 seconds too; long enough to bring her out into the front room and show the grandparents. It probably doesn't sound like much to non-parents, but this feels like a huge step to me - as you can see, when I put her down last night, she immediately grabbed the back of her pacifier and actually held it in place as she fell asleep - she's gotten as far as figuring out that she doesn't want it to fall out, but hasn't quite mastered avoiding accidentally spitting it out!

20140606 Cellpic-Doting 2Its funny, though, reading through the various parenting books that I've obtained - so many of them are oriented on the traditional model of a mother staying home while the dad goes off to work, and that's just not how things end up for us.  With Eden having been sick, a lot of the night time care and off hours has fallen to me, as it just hasn't been safe, much less comfortable, for Eden to jump up at the drop of a hat, or in this case, pacifier.  The texts so often reference the first time a father takes his child out on his own, or babysits alone for a few hours, etc, etc, etc, and its kind of landing with Eden in that role, which is mildly amusing.  I can't wait until she's feeling better so that she has more of an opportunity to engage with River and see the fine granulations of her progress, and not just because I'd love to be able to split the labor.  I haven't had much in the way of sequential sleep for a month and a half now.

Thankfully, her grandma Suzanne has been fabulously helpful in this respect - we've evolved a routine such that she watches over the baby for a few hours in the morning after waking, if she doesn't have plans of her own.  Its not much on paper, but in practice, that extra 2 or 3 hours without interruption is probably all that's stood between me and a clock tower.  Honestly, our family has been marvelous about supporting us through this rough patch, and I think it just shows how lucky we are to have them to count on.  I'm not sure how we would survive without their assistance.

20140601 Cellpic-Tired times 2 Sometimes I worry, as Eden does, about how we'll be able to transition to a more independent model over the next few years.  Its crazy how difficult it can be to navigate with minimal funds and neither of us has really gotten very far, emotionally, in accepting our respective disabilities.  That said, I do see some advantages to our situation.  As I said, we have incredible support from family and friends, and River will at least have the advantage of two readily available parents, even if we aren't always fully capable at times.  And she'll always have our love, unfiltered, even when she takes advantage of the fact that we're already completely wrapped around her tiny little fingers.

Sunday, May 11, 2014


Ok now, that really has been an obscene amount of time between updates.  Silly how I keep on letting it slide, and more and more dreading the incredible amount of filling in I'd have to do to really bring things up to date.  So, enough of that.  I'm just going to start in here, and if past events don't get mentioned until later posts when they come to mind, that's that.

Point 1:  We were pregnant, and should have shouted that fact to the world here the second we were sure things were sticking.  Long story short, we had a number of semi-minor scares along the way, that all seem to have pretty much resolved uneventfully, and Eden just gave birth to a lovely little girl, River Danielle Scheans Byram, on May 8th.  Due to a few iffy medical concerns, we induced and gave birth about two weeks early, and are actually still in the hospital just to make sure everything lands alright (officially, Eden was discharged today, but River is still on the hospital roll-call and thus we're all still staying here for at least the next day or two.)

Point 2: Migraines continue to be a daily fact of life for me/us, and we're still adapting to making things work.  Three positive bits to bring up on that front - I started Botox therapy in concert with my other medications about 8 months ago (there's a booster every 3 months), and I've got to say, it's helped a great deal - subjectively I'd say that it's nearly on par with medical marijuana for pain control (in terms of overall dimming of pain, as it's a long term effector rather than an interventional that only lasts a few hours), and is easily more effective than all of the rest of the pills I take in concert, so I'm getting a few days in here and there where the pain stays low enough not to need interventionals, and it seems like the maximum level is still lower than it's been - I've only been to the ER for a multi-day event once since starting this therapy.  Obviously, I'm still doing the balancing act of trying to save enough of the prescribed meds for when I absolutely need to be able to drive (they really only dim the pain to let me concentrate just enough to be safe for an hour or two, and they're horrible for my liver and thus limited in how often I can take them), along with over-the-counter anti-inflammatories (also not great for liver and taking too often can lead to rebound migraines), and taking caffeine and marijuana only when in pain and as sparingly as possible to keep my sensitivity up (fortunately both seem to have a short half-life within the body and thus regain efficacy with only a day or two off).  Hrmm... quick side note to those considering medical marijuana for their own issues, if I haven't already preached enough on the subject - for the most part, the cannabinoids (various chemical complexes within the marijuana plant) relevant for medical use are not the same bits that are relevant for recreational use.  As such, the breed that works for you, and the amount you need may be dramatically different than is indicated in common references on the web.  (As an example, most cannabutter recipes I've found use a rule of 1 oz of marijuana to 1 pound of butter - for my own use, I generally only go with an 1/8th for one pound, and that lasts me for a fair bit!)  Short version, go easy to start with!  On the other hand, THC, the single most commonly referenced component, does have its place in treatment - while it doesn't seem to do much for pain directly (based on my own experiences with the more recreational breeds), it can certainly make it functionally less important to you, as most opioid medicines seem to.  Definitely worth having on hand for the really really crappy nights where you just can't seem to catch up to the pain otherwise.  Enough on that for the moment, I think.

The "de novo" review of my case with the VA finally completed a month or so ago, regrettably with no change in decision (I'm still 0% disabled/service-connected, and they're only admitting responsibility for my psoriasis, which is of course maddeningly irritating, but not significantly disabling in itself.)  This has led to a recent search for a lawyer to represent me for the actual appeal (which has in fact been found and contracts signed for representation, etc, etc) - it does mean that she'll get a 20% bite out of my back pay when the appeal is ruled on, but at this point its worth it to be sure that the VA finally listens to what's actually going on here; functionally this ruling will have a huge impact not only on my life, but on Eden and River's as well.  The good part that came from that review and a thorough run through of my VA medical record is that we now have as part of their own internal documentation statements to the effect that I am disabled and that working or going back to school would not be significantly productive.  Effectively, the only remaining sticking point is to conclusively connect the dots and show beyond reasonable doubt that this is most likely a result of my chemical exposure.  The evidence is there, and there are numerous other sailor in similar situations, it's just a matter of time at this point.  Honestly, it really shows how differently the VA system works as compared to a regular health care system; bottom line is that we vets are a cost center and a liability, not a source of profit for the organization entrusted with our care.  There's just not a good way to reconcile this that I can see, and its pretty evident that the overall strategy for cases like mine has devolved to devoting as few resources as possible (they actually reduced their personnel working appeals cases last year while delays in processing continue to increase) to the issue and essentially hoping that we'll give up and go away (functionally a vet that passes on while waiting out the process lands as a win for them.  Boo.)  At this point, according to all of the current information I've been given, I should be standing in front of a judge in somewhere around 2 years and 11 months from now.  There is a minor potential upside to that though; the backpay will have built up enough that even with the lawyer's chunk taken out, a darn good chunk of the cost of a house for our family should be abruptly available.

Other than all of that, our family as a whole is doing well.  We're still trying to figure out what the future is going to look like, but we can't wait to get there (and maybe, just maybe, I'll eventually be able to go back to being able to pass by a kid without having weird flash-forward moments of how life is going to be with River when she gets to that age - the last few months have been crazy with catching myself daydreaming about such things.)