doolittle

first the cute, THEN the medical (then I murder the ghost of Camus)

I. The Autosomal-Dominant Chef's Guide To The Recession Pantry

   Lately we here at Casa del Doolittle are flat broke doing that eco-friendly, sensible thing where you "eat your pantry" before shopping again.  The severity of the current cashflow issue hallmark Doolittle trait of refusing to admit defeat until there is NO other option has caused me to get inventive a few times, and last night I hit one out of the park!  It's easy and tasty and cheap, so I thought I would share it with you (plus the recipe sets the scene nicely for one of the cutest things a Doolittle child has EVER said!).
   A typical problem with cooking recession-style in this house is protein.  The Medium Animal will only eat white-meat from chicken, will consume yogurt but not milk or cheese, and will eat ground beef in various iterations only if it is lean and texturally-pleasing, and the kid WILL NOT EAT EGGS OR BEANS.  We're lucky thon will eat peanut-butter!  But The Patriarch buys eggs by the flat at Big Box Discount Store, and they keep forever, and often when supplies are short I find myself eying them longingly (or else making them for everyone but TMA and crankily slapping together a PBJ for the obstinate little bugger).
   Last night I had a stroke of genius, people, PURE GENIUS.  TMA loves pizza and will even eat the dreaded cheese on same, and loves broccoli in any form (told you the kid was weird), and garlic (thon wouldn't be a Doolittle if thon wouldn't eat garlic--my babies came out covered in garlic-flavored vernix I am firmly convinced).  There were four pieces of wheat bread left, one of which was a heel (POISONOUS!  No Doolittle child in their right mind would eat such a thing!), so sandwiches were out.  We had a steam-pack of broccoli cuts in the freezer.  I put those in the microwave and the bread (heel and all) into the toaster, and diced a couple of cloves of garlic, tossing them into a skillet with two tablespoons of butter to sizzle while I buttered a round Pyrex baking dish and fired up the convection oven.  When the bread was toasted I put the four pieces down into the browned butter/garlic mixture and then flipped them over, stirring them around to coat evenly, then stacked them on a cutting board and used a big knife to cut them into squares about the size of those icky cheap commercial croutons (trust me that garlic-buttered wheat bread tasted way better, erase the image of those things from your mind now that you have a good reference-point for size).  I pressed them into the bottom and sides of the buttered baking dish, like making a graham-cracker crust but more casual-like.  Then I drained the broccoli and dumped it into the frying pan, stirring it around to pick up any remaining garlic and butter, and whipped one giant double-yolk egg (the kind Chicken Jane's hens lay--I figure the yolk of an Amish farm egg is probably better for you than one from a discount-flat commercial egg) and several lowly discount-flat egg's whites with a generous sprinkle of Adobo seasoning, spread the broccoli on top of the crumbs, and poured the egg mixture over everything, using a spatula to smash it all down , and baked the sucker.  For baking times, I would suggest you consult Joy of Cooking's quiche guidelines; I winged it using the convection oven feature of a toaster-over with convection capability and a rounded-out back to accommodate round baking dishes and commercial frozen pizzas.  Convection ovens are different from regular ovens and toaster-ovens are energy-efficient but not quite like using a full-sized one, and I don't like to take chances with fully cooking anything eggy so I abdicate all responsibility there.  Let's just say that it's OKAY if one side puffs up hugely, it'll settle back down, and I took mine out when the broccoli and bread crumbs that had floated to the top and the ones against the sides of the dish were nicely browned.
   So there is the recipe.  And now, The Large Animal's reaction: "What restaurant is the Cheese-free Broccoli Pizza from?" (yes that is what I called it to avoid explaining what a quiche was and therefore using the E-word in front of TMA, who almost went on French Toast strike the other day when TLA was quizzing me on how I'd made it; you've got to watch that, people).  I said I made it myself and thon said "WOW, your dad must be a REALLY good cook if he taught you to make THIS!" (my father was, among other things including pilot, psychologist, and sheet-metal worker, a chef and the Animals all know he taught me to cook; I like the family imagery it evokes unless explained overly much and also the image of a man in the kitchen--my kids have crappy grandparents and a father who Does Not Cook).  I said "Grandpa-In-The-Pacific-Islands" (not to be confused with "Crazy Grandpa," and y'all if The Patriarch's father beat mine out for that title you can just IMAGINE...well, no probably you can't but trust me, "Crazy Grandpa" is REALLY CRAZY) didn't teach me how to make this, I just made it up tonight.  "You didn't use a recipe?" TLA said, in hushed tones of sheer awe.  "You made this up by yourSELF?"  I said yes, I did.  Aaaand quote of the YEAR: "Wow, Mommy, you need to go on TV and teach other people to make this, because you're pretty enough for TV and this is the BEST DINNER EVER!"
   I will keep that one after all, even if thon does like a swarm of locusts.


II.  The Appointment, The Redux

   The update I posted yesterday was just a happy little snippet highlighting the positive.  Now for the whole story.
   It made my head SPIN afterward when I thought about all the medical jargon and procedural run-downs and nearly-ordered tests and side-effects discussed yesterday.  I don't think I could recount it ALL even if I tried, and I'm not about to try.  Here are the highlights:

*   OPU (Oh Poor YoU! is the rather famous teaching hospital in the next town over, as opposed to DUH or Doolittle University Hospital, which is adequate but not fantastic, especially for pediatrics) has residents in training shadowing all of the big-dog docs, and Dr. Tummyboutyourfeelings is no exception.  I have no problem with residents coming in as the first line of assault in appointments like this as long as the Big Doctor actually comes in and addresses our concerns.  I figure they probably are MORE thorough than their more experienced counterparts, because they're being tested and watched, plus I am all for the next generation of doctors getting to know how to care for our breed of freaks.  Yesterday's resident took a very thorough history and performed a meticulous physical exam on TVSA.  When she placed the stethoscope to thons chest her eyes widened slightly and she got an "oh (brown-word)" look on her face, and obviously trying to think of what to say.  I felt bad for her and jumped in with "Do you hear the murmur?"  YES, she said, looking grateful.  "TVSA has had an echocardiogram done already because of the F-R-C-Z-S and it's a pulmonary flow murmur--the cardiologist says thon will outgrow it, so I didn't say anything, but I guess it's still there?"  She nodded, seemingly giddy with relief, "Yes, I heard it, and I didn't know if, I mean, it sounds--"  Yes indeed, but it's not as bad as it sounds, it's innocent.
*   At various times Dr. Tummyboutyourfeelings mentioned possibly doing the following tests, but I proved them unnecessary with my calm, parenthetical interjections, and spared my kid a bunch of grief: 1.  Another EGD with general anesthetic because perhaps the other two haven't gotten a sufficient sampling of--(no, actually our Allergist wasn't satisfied with ruling Eosinophilic Gut Disease in or out based on the sampling from the FIRST one, but personally dictated to our former GI doctor what samples to take and where from and how many with the SECOND one, and if TVSA does have eosinophilic gut disease then it is suppressed on biopsy currently due to thons elemental diet)(he nodded and said that based on the elemental diet we couldn't know for sure but only wanted to make sure the sampling was done correctly at least ONCE).  2.  An abdominal ultrasound to check the lower pyloric sphincter's--(no, TVSA had one of those at eight weeks of age to rule out Pyloric Stenosis, which The Patriarch has harped on again recently but TVSA does not have per the previous ultrasound).  3.  Bloodwork while we were at OPU to check for an elevated IgE level (been done by Famous Cancer Center's chief of hematology at least once I am pretty sure, and by the way no sticking my poor anemic little bleeder please unless you're certain its necessary)(as I mentioned in my quickie update, Dr. Tummyboutyourfeelings was very respectful of the bleeding disorder--he asked if it was Von Willebrand's and I said no and explained that Famous Cancer Center was still ruminating on just what it might be, and he said "oh, well, they know their stuff, just ask them to fax me what they have and I'll see if anything there speaks to me, but I agree that we should limit the diagnostic phlebotomy since the child's H and H are so very borderline" and I love him now).  4.  An evaluation by speech and occupational therapists from Feeding Boot-Camp to see if maybe (yes, I explained, thon has seen them while in-patient at two months of age, for pre-G-tube evaluation at five months, and by the County's Early Intervention squad at two years, and they all agreed that thon is chewing appropriately and not aspirating or sensory-averse in any way)  5.  A trial run at Feeding Boot-Camp because sometimes children will develop these little sensory-- (I cut him off at the knees and told him my older two children were developmentally-delayed and I knew very well what sensory-defensive and sensory-averse behavior looks like, and that TVSA does not gag on foods of any consistency, will try anything, but just a few bites of it, and doesn't fight us on tooth-brushing and said "ah" nicely for the resident yesterday,  so unless he could prove to me that oral intake of "normal" food would be beneficial to TVSA and/or there was some new information on sensory issues and eating that might apply here then NO we were NOT trying that just for giggles).  5.  A sweat test for Cystic Fibrosis (I was tested for all mutations of CF during pregnancy because my OB/GYN is a huge CF fanatic who lost a brother to the disease as a young adult, and if she can strong-arm your insurance into paying she always tests pregnant moms; for TVSA to have CF The Patriarch and I would both have to be at least carriers, and we don't know about him but we do know about me thanks to my lovely and life-saving OB/GYN, also TVSA's blood sugar is always normal, and thon has only ever been hospitalized for a respiratory infection ONCE at about seven weeks of age after contracting RSV). 
*   It's not that I'm a skinflint who wants to avoid co-payments or a Christian Scientist or anything; there is a time and place for all of the above measures, but if we already know something I don't want to repeat even minimally unpleasant tests on my child, and I want to keep the flow of logic going rather than do the "let's order X and then talk again" thing until we hit a true dead-end, which the barium study seems to be; we have not seen a barium study of TVSA's stomach since the child was two months old and we have not seen ANY gastric-emptying studies, although to his great credit Dr. Tummyboutyourfeelings said that was unnecessary as TVSA OBVIOUSLY has gastic-motility issues and we don't need to do the test to see that based on thons dependency on laxatives and residual issues with anything except the straight Neocate 1+.  So we're doing the barium study, and I'm okay with that--they will deliver the barium solution via TVSA's G-tube because thons esophageal anatomy is not in question, and then thon merely has to lie under a flouroscope for a few minutes, and per Dr. Tummyboutyourfeelings "thon doesn't even have to hold still--those things will show a moving target, so don't worry about any kind of sedation or restraints being used; TVSA is very cooperative and this'll be quick and easy."
*   Long-term use of proton-pump inhibitors causes osteoporosis???  What!  The Patriarch looked at me in horror and together we looked at TVSA and then I remember that TVSA and I have both had DEXA scans in the fairly-recent past and it felt good to be able to tell Dr. Tummyboutyourfeelings with confidence that so far that wasn't a problem with either of us, at least as of right now.  It felt bad to have to quantify the current norms about my child's health and my own with such sophisticated banter about bone-age and no, no known achondroplasia, and yes developmentally-advanced, huh...in the end Dr. Tummyboutyourfeelings was an excellent psychologist and physician because he acknowledged The Mystery.  And remembered to examine "Bear's" tubie.

III.  The Inevitable Post-Appointment "D'oh!" Moment

   Wait a second now...this antral web theory is bunk.  Now that I've consulted with Dr. Google I know that while it typically doesn't manifest until after three months of age, which would fit with the barium study done when TVSA was two months old being negative for any such thing, the rx for this is intentional rupture with an endoscope.  Which, um, TVSA has had TWO endoscopies done since thon was three months old (three if you count the G-tube insertion, for which they use an endoscope--they get it to the point in the stomach where they want to place the G-tube then turn off the lights in the OR and shiny the endoscope's light, stabbing a hole where they visualize the light through the skin and stomach in small children, yes REALLY), and I have seen PICTURES of thons DUODENUM, for crying out loud--if there was an antral web it would have been visualized then I would think, and to get to the duodenum they would HAVE to rupture it...unless of course one has grown since then but that seems SO unlikely...sigh.  The Patriarch is pinning his hopes on this antral web thing because it would be a surgical "fix" but I don't see any way on earth that this is to blame for any of TVSA's issues.  Dr. Tummyboutyourfeelings was saying that perhaps this was why thon could only tolerate the elemental formula and vomited more after eating table food, but even when I've ground table food up finely and delivered it in a liquid form through the G-tube the child has thrown up from it.  Which to me would seem to indicate an allergy or intolerance to pretty much everything except the Neocate.  Which brings us back to "Why?" and that is The Mystery and so we are back to that.  Dang.
   Also, The Patriarch is incensed over where TVSA ranked on the growth charts yesterday.  We thought thon was in the 50% percentile for height (which is acceptable to The Patriarch) but it turns out that Famous Cancer Center's hematology folk use the "stunted" growth chart because they primarily work with chemo kids.  We were introduced to the "stunted" growth chart when TVSA was a nine-pound four-month-old, and ranked as "moderately stunted."  Now apparently thon is normal for a stunted child but only in the 3rd percentile for height when you're talking about "normal" children and in the fifteenth to twentieth for weight.  Dr. Tummyboutyourfeelings agreed that children like TVSA need a certain amount of "chub" to grow on, after going through periods of deprivation.  Their bodies remember the fear of malnutrition.  He said that this told him TVSA was getting good nutrition from the amount of Neocate I am currently given thon.
   Right there, just now, I would have waid "we are currently giving thon," but it would be a lie.  I'm not doing that thing where mothers of sick children become possessive and do not acknowledge what others contribute to the child's care, just telling it like it is: The Patriarch has developed some kind of mental block when it comes to feeind TVSA via the G-tube...he'll do it if he HAS to like if I'm in the hospital then he will...otherwise if I go to bed before he and the Animals do he'll "forget" the evening feeding, or if I sleep late on a weekend TVSA will miss "breakfast."  Each of those feedings is one-quarter of what the child needs to be healthy and grow on a daily basis.  Until this "stumbling-block" came up in our relationship as co-parents I thought "seeing red" was hyperbole.  But I really do. 
   Yesterday after the appointment The Patriarch was so pleased with how I'd held my own in conversation with Dr. Tummyboutyourfeelings and remembered medical details and pointed at the "OMFG LOOK A CRANE OUTSIDE, LOOK HOW BIG!" outside the windowed breezeway on the opposite side of the space from the gift-store trolley-cart with helium balloons and candy and toys so that we didn't have to drop twenty bucks on mylar and "sibling gifts" that he let me choose the restaurant where we ate lunch (I had not thought we would stop for that, but he made it sound like a date and we were giddy from the non-badness of the appointment).  So I chose a nice, funky-decor little Meditteranean bistro (Tom-Tom has restaurant lists!  I may like Tom-Tom after all...), with Art Nouveau on the walls and a subtle flamenco rhythm turned low on the sound system.  It was nice--when there are two of you and one child everyone can use the bathroom by themselves and appreciate the colored-glass mosaics around the mirrors and the glass case of hookahs on exhibit (Tom-Tom found my restaurant soul-mate).  The smells of the kitchen and the food from nearby tables was heavenly, and in the midst of Big Scary Appointment day I finally learned that there was in OPUburg an endless desert summer of an exciting and chic dinner with my handsome husband and our precious babe. 
   Until I went to give TVSA thons lunchtime feeding, getting out 340 ml of water in a sealed container, emptying a packet of Neocate 1+ into it and shaking it up in one hand while laying out syringes with the other, siphoning 5 ml of water from my own (untouched) glass to use as a flush and unfastening the top of TVSA's shirt to discreetly attach the extension set to the "tubie," and The Patriarch got all fidgety the way he did when The Large Animal was first born and I would breastfeed the child, and said "d'ya really think you should do that HERE?"  Tube-feeding or breast, there are two ways of interpreting this; either as being "polite" and not wanting to offend or disgust onlookers, or disapproving of the way you are feeding your child.  With breastfeeding I think we need to disspell the "weird" through feeding children as needed without disrupting the mother's daily activities, and when he'd fuss like that I'd tell him off without a second thought (and occasionally spike his dinner with human dairy just so I wouldn't kill him right there at the table while he outlined his mother's concern for the baby's nutritional wellbeing without all the VITAMINS of FORMULA!).  My baby was eating at the tale with me and if that bothered people at another table they shouldn't have looked, and if it bothered you at my house you could find the door and if you were brainwashed into seeing formula as the more natural way of feeding a neonate then you needed to stop scaring my husband about the baby starving and SOCIETY WOULD HAVE MY BACK.  Now we're back to him looking around nervously and wondering if I should DO THAT, you know, HERE, and me telling him my baby is eating at the table in public, and not sharing much of my salad with him because I am so furious he suggested our child ought to eat in the "ladies' room," but I am not sure how society feels.  I've never had anyone EXCEPT for him urge me not to feed TVSA whenever and wherever meal-time strikes, but would it ruin YOUR dinner to see a mother slip a line up her child's shirt and pour formula down it through a large syrine via gravity?  Would you look away?  How would you react if you had a small child with you and the child asked loudly what was going on?*  I'm really asking you--how do you feel?  Anonymous comments are fine if you like.
   It just about frosted my endless summer over by I recovered and enjoyed the rest of the lunch.  I don't want y'all to think I upped and pitched a wall-eyed fit, I just said firmly "TVSA is EATING, Daddy, of COURSE thon is sitting at the TABLE!"  Sigh.

*   In case you were wondering how to answer that hypothetical question and you are out with a small child and encounter someone feeding their child via G-tube, I am pretty sure I can speak for all of us when I say that the tube-fed child's mother will NOT be offended if you fail to snatch the child over your knee for even looking.  I hate seeing little kids express curiosity and get yanked or shushed or slapped; it's a legitimate question as that little person acquires their personal library of knowledge and this is a nice teaching moment.  I can't speak for how everyone who tube-feeds their child would feel about the way you answer, but I personally help parents who look to me like deer in the headlights out sometimes by smiling at the child and explaining "My baby had a really sore throat when thon was little and couldn't swallow milk, and if someone can't swallow food sometimes doctors put a tube like this into their stomach and they can eat that way and still get nice and big and strong like YOU when you eat your VEGETABLES!"  Just explain to them in an age-appropriate manner what the heck is going on and they won't be as VOCAL if this happens to you in public again, and everyone can go about their business.  If they are a very young child sometimes it may not go awry to throw in something about "but that baby was probably born with that problem, it's not something that you can catch and it doesn't mean there is anything else wrong with that baby, even."  You're welcome.

quickie

Dr. Tummyboutyourfeelings confirmed that on the NON-stunted growth chart The Very Small Animal is in the 3rd percentile for height and between the 15th and 20th percentile for weight, but did NOT bring up growth hormones! He wants to do a flouroscopic barium study to check for something called an "antral web" in TVSA's stomach, which is not invasive or painful and does not require sedation or in-patient time, so this seems reasonable enough. He was going to have bloodwork drawn, but when I mentioned the anemia and bleeding disorder decided to request Big Famous Cancer Center's most recent results and plan from there to minimize the venipunctures and phlebotomy-related depletion of TVSA's bloodcounts. He was downright humane, y'all, and told The Patriarch there are no enzymes that would help TVSA, that we need to keep doing exactly what we are doing because compared to thons chart TVSA looks GREAT and why risk a setback. He also agreed with me that the feeding boot-camp program would not at this time benefit TVSA. So overall he said I was totally right as far as the current care plan goes. I mentioned TVSA's morning and evening hoarseness and he said he doesn't like using PPIs long-term on kids but prescribed Carafate, which we have used before and works pretty well. No date on the upper GI series yet but it should be a couple of months out so that we can meet with him right after to look it over and by then he will have reviewed the bloodwork. The antral web would mean surgery but might help TVSA eat more "real food.". If we find nothing we may have to put TVSA through an EGD or go back to the geneticist and/or an allergist and/or endocrinologist. But overall today was good and we're not making any drastic changes, which is exactly what I had hoped for. Yay for Xanax and Dr. Tummyboutyourfeelings (and The Patriarch's Blackberry, on which I am typing this from the passenger seat of The Doolittlemobile)!

this is the (real) sound of silence

   I mentioned how this "silence" on Doolittle has been more like an ear-splitting cacaphony, complete with castrati sopranos and alley cats fornicating along, and last night while "discussing" all and sundry with The Patriarch where it came down to "I'm not listening to you lalalalala" with fingers firmly in ears (me, not him)(I know, right?).  I literally plugged my ears and spoke out in a mantra of "I will not listen to you right now, I will discuss these things when you are calmer and there is less Unbloggability (or potential for, rather, none has occurred thus far since I have started refusing to escalate with him) in your eyes and at your lips because it will be damaging for me and I cannot afford to be hurt right now."  He kept talking for a while but I chanted loudly enough that he could tell I wasn't actually hearing him, and I had my eyes closed also, refusing to see his lips move.  I filibustered, y'all.  I don't even know where he STANDS on the upcoming election because he has not volunteered that information and I have not asked.  When I knew both times in advance that he was voting for Shrub I about had a conniption.  So I turned a deaf ear on him, and his criticism, and his questions that are really criticisms.
   I feel bad because really I know that these are his fears finding their voices and he needs SOMEONE to talk to through this but I don't think it is fair for that person to be me right now.  This thing is kicking my arse HARD, harder than his I think because of the "wish-baby" factor (I knew when I mentioned this a couple of posts ago that I had a better one for linking, but am I the only one who finds that technorati no longer fully works on Typepad blogs since they condensed everything and put in the teensy chevron "arrows?"). 
   Which may seem silly since durrr wishing alone doesn't make babies for a lot of folks.  I feel silly even talking about it.  But why?  When The Patriarch had his vasectomy I procured the back-up method (I was still breastfeeding The Medium Animal at the time and did not want to risk hormonal anything screwing with my milk supply), and I did place it strategically on the nightstand.  I even mentioned its presence the day I had gotten an ovulation-type twinge and The Product was not unboxed that day although it was the next, is the funny thing, and from then until we found out there was no closing the barn door, the horse had already gone galloping toward its wild oats.  As The EMDR Fairy keeps reminding me, "he had something to do with it," but I am supposed to be the sensible one.  Perhaps in retrospect I guess I WAS, since it is such a privilege to watch as TVSA continues grow and absorb information at a terrifying pace and turn into a wee little person.  I didn't lay down the no glove no love.   But then he at nearly forty still thinks that the withdrawal method is completely effective because he's got mad control over his entire manly area, and gave me a ten-second lecture that I found utterly laughable.  But then knowing how laughable it was...maybe it is just because he blames me and his is the innermost voice that tells me I am wrong, always.
   Having turned that deaf ear, I am discovering that when one suddenly goes deaf, talking about how it happens gets harder, not just because it is so very sad and scary and heartbreaking, but also because you stop hearing everyong else and can't even fully hear your own words anymore.  It's like being trapped inside my head.  I play with the Animals, chat with Chicken Jane, I even COOKED over the weekend (challah bread sliced and toasted and then made into french toast with I whole egg plus one egg white, a splash of soy milk, a tablespoon of Splenda, a dash of vanilla, and a generous shaking's worth of cinnamon fried in REAL BUTTER is sinful kinda good y'all, and I totally cheated on my diet) (which is why this morning when I had it again you may pat me on the back for using whole wheat bread at least), but to The Patriarch I have turned a deaf ear.  I wish I could be there for him, but this is the kind of time where it would be great if he ever did actually get himself a therapist or some guy friends (no, no female friends for him--that is something that from an evidence-based standpoint I can say with absolute authority would not be a good thing).  I can't hear him.  Not because I am actually literally deaf, of course, and not even today to the point of having to drone him out, but because "I'm not discussing this" is starting to work.  I think this is a good sign that he is at least semi-respecting a couple of boundaries, but I am also afraid the dude might explode.
   Any current or former moms or dads reading this, if you are a mom and have a babydaddy who has been through this with you or if you are a guy whose child has ever been mysteriously and/or seriously ill for a LONG TIME, please leave me a comment with your e-mail address.  I moderate all comments so if you don't want everyone to see then just say so and it'll be from you to me.  I might e-mail you with some questions to either present to your babydaddy or answer yourself if you wouldn't mind.  It would be FANTASTIC if you/r babbydaddy were willing to correspond with The Patriarch about it via e-mail (he seems to be able to read e-mails, but nothing else, and not e-mails from me, hmph).
   I'll update you tomorrow after Dr. Tummyboutyourfeelings, although it might have to wait until the Animals are in bed.  If anything truly major goes down I'll ask someone to update you sooner with at least the bare essentials. 

   :::silence:::

can't I just go to sleep and wake up for the baby's appointment?

   The Patriarch and I had a talk last night about The Very Small Animal's upcoming appointment.  Sort of.  It kind of went in fits and starts with my trying to tell him what I was thinking, then having to go "STOP YELLING I WILL DISCUSS THIS WITH YOU BUT NOT IF YOU YELL," and then trying to tell him what I was feeling and having to go "I am not finished and it is rude to interrupt.  Do not tell me that you have ADD and will forget what you meant to say and therefore MUST interrupt because I have ADD now too* or did you forget?" and then trying to tell him about Gwendomama's son and what growth hormones did to him and how that combined with my own very poor reaction to any class of steroid made me dead-set against using HGH on TVSA and then having to say "no, I did NOT say that I could predict the future or know more than the doctors do, but--" and also a lot of "GOD DANG IT, WHAT DO YOU THINK THEY ARE GOING TO DO TO FIX THE KID?  YOU CANNOT FIX A GENETIC CONDITION, YOU JUST CAN'T" on my part.
   We made SOME progress in that The Patriarch revealed (he claims to have told me this and I am fairly certain that he did not but it was during the season of comas before my thyroid and adrenal glands were adequately treated, and my memory from that period has a lot of holes, so even though I can usually remember whether or not we've discussed something, and he does frequently think he has discussed things with me and later admit that he had just THOUGHT about discussing them with me, I can't call shenanigans in good conscience, which irks the HOT PLACE out of me) that the time he took TVSA to see Dr. Dude while we were arguing about growth hormones, Dr. Dude informed him that due to the recent growth (this was at the beginning of TVSA's current growth-kick) he would prefer to hold off, and printed out a graph of thon's growth velocity, showing The Patriarch how it had finally assumed a "normal" pattern.  So The Patriarch is no longer danged and determined to put the baby on growth hormones, especially since I have told him that if it comes to that I am NOT giving the kid the shot.  Yes, I have given injections before.  Yes, I am the one who handles Things Medical.  Yes, I did the NG-tube.  But the NG-tube was to save the kid's life, not for vanity's sake, and The Patriarch is squeamish enough (most of why I had to always do the NG-tube) that I think that thought alone might give him pause.
   We still ended up deadlocked at "LEAVE THE BABY ALONE" vs. "WE HAVE TO FIX THE BABY!"
   But I thought there'd been progress, and that I had lowered my anxiety levels about this appointment, and then this afternoon when the kids went down I NEEDED some space, and The Patriarch was supposed to be leaving but instead did that thing he does where he cleans furiously, and re-arranges the pantry, and moans about this and that and my not paying attention (see, if he says he is leaving I feel free to read blogs or listen to Guided Meditation CDs with headphones, but if he's doing that thing where he NEVER LEAVES then he feels free to interrupt me and it drives me INSANE).  And then he felt the need to mention that surely TVSA just needed some enzymes or something, that if I was as smart as I THOUGHT I was I would know that children on Neocate for long periods of time NEED supplemental enzymes (what?  I haven't even consulted Dr. Google yet but have elected to instead ask the GI doctor on Tuesday), and then said that maybe thon just had "a little cystic fibrosis, and those kids can digest food just fine with enzymes," and...that's about when the walls started closing in.  For two reasons.  One, I am SICK AND TIRED of this "FIX THE BABY!" bullexcrement.  Two?  The Patriarch's ignorance on Things Medical never ceases to amaze me, and to hear him expressing HOPE that our kid might have cystic fibrosis because then thon could at least EAT NORMALLY?  Broke something key inside my head and I ended up having to take some Xanax and lock myself in the bedroom for a time-out.  "But I need to get some things from there before I leeeeave" whined The Patriarch, so I said fine, get them, but then I am locking the door and not opening it unless one of the kids wakes up or the house is on fire.
   I'm glad we're all adults here.
   So apparently I am still a little bit crazy over this whole appointment thing (and don't get me started on my husband's habit of accusing me of talking out of my arse on Things Medical when he goes and does something asinine like express HOPE that our kid has CYSTIC OEDIPAL FIBROSIS).  Sorry, y'all.

*  Due to my extreme self-discipline I was not actually diagnosed with ADD until fall of 2006; The Patriarch was diagnosed during the first year of our marriage and for a long time ADD was his Get Out of Jail Free Card, as in "YOU do the bills, I have ADD and it is hard for me," and "don't complain when I interrupt you, I have ADD and will forget what I was going to say but YOU can remember what you were saying" and even "of COURSE I screamed at you, but don't get all MAD about it, I have ADD and that means I have poor impulse control, don't take everything so personally.  I used to joke that if I had three wishes the first would be to have ADD to even the playing field, because things weren't as easy for me as he thought, I just refused to give up on something I started until I had finished it even if I had to die trying (and with my thesis I came close, people, VERY CLOSE).

battening down the hatches

   I am sinking into fullblown disassociative crisis-mode over here.  The EMDR Fairy pointed out that that CAN be a very effective defense mechanism.  I agree, but it's not very flattering and keeps me from being all that I could be if not for walls closing in on me.  I still haven't even discussed my most recent visit with The EMDR Fairy with The Patriarch--he insists on keeping the Animals up so late that I've taken my Mirapex and gone to bed by the time he is free (I put the Animals down if they go to bed on-time between 8:30 and 9, and if he insists on leaving them up then it is his job).  And honestly, I don't know if it will do any good.  He is so heavily entrenched in his denial over The Very Small Animal's health and the possible (probable) magnitude of what thons features and symptomology mean that any attempts on my part to coax him toward realism are USELESS.  And interpreted as mental illness on my part, attempts at reading the future, claims to having a license to practice medicine when in fact I do not, etc.  Because if it was one of those things, rather than realism, then he would still be right and perhaps someone could still Fix The Baby.
   The EMDR Fairy pointed out that Dr. Dude may be my ace in the hole in all of this, since to enter the feeding bootcamp at OPU ("O Poor You," the next-nearest teaching hospital to Doolittleville University Hospital or "DUH") your child's pediatrician must write OPU a letter stating that in their opinion it is safe for the child to lose 10% of their body weight.  Dr. Dude has seen TVSA through two horrible winters, and I am pretty sure he would NOT be in favor of screwing up this current good run of health in the name of something only questionably beneficial.  Also, even if he is on the fence, I think if I burst into tears he'd do whatever I asked, simply because that time we all got diagnosed with the bleeding disorder and he handed me the card to Very Famous Cancer Center to get the Animals' Hematology work-ups done I flipped the (fricative) out on him and he was plainly horrified.  I think he'd do just about anything to avoid a repeat of THAT little debacle, and I am not above crying if it will keep my kid from being traumatized by unnecessary and futile hospital-time (The EMDR Fairy calls this "using all of your tools" and says there is nothing wrong with that even if one is a feminist, because it's the goal that is important here, more so than the means).
   I think a lot of my apprehension comes from the fact that the only other time I have dug my heels in and resisted what The Patriarch and the medical establishment were saying was best for TVSA, it led to The Patriarch's marital indiscretion and the temporary dissolution of our nuclear family.  He felt bulldozed, and ignored, and there was some predatory see-you-next-Tuesday who told him everything he wanted to hear, and stroked his ego, and...yeah.  Now, I think he knows better than to do THAT again, but I have not had to put my foot down in such a big way over anything since The Unbloggability occurred and he got the diagnosis of Bipolar Disorder, so while I will absolutely do it again if Dr. Tummyboutyourfeelings wants to do a bunch of invasive and unnecessary tests we already know the answers to or try to force the oral intake/"normal" diet issue, let alone GROWTH HORMONES, it would be very, very ugly and unpleasant.  And, y'all?  I am sooooo over the unpleasantness around here.
   Also, this morning Chicken Jame came in fresh from Googling around (yes, my Amish nanny/housekeeper has innernet) and wanted to talk about MPS, and that was pretty much the LAST thing I wanted to talk about.  I don't mind talking about it online; I was ready to invite Gwendomama over to make s'mores and braid each other's hair and have an armchair geneticists-only slumber party here at Doolittle yesterday, and please if ANY of you have any ideas for a diagnosis for TVSA do not hesitate to speak up, I want to hear about it, but...I don't like to say those things out loud in my home in front of my children.
   Plus I'm a little worried about coming off as insane at OPU if they ask me just why I am so very against growth hormones, because the honest answer would be a combination of "I don't react at all well to steroids myself" and "my gut is screaming no" and "there is this lady who has a blog where she talks about her son who reminds me a lot of TVSA and growth hormones made him very, very sick and he died."  But what ELSE am I supposed to say?  I am worried that between sounding rather stereotypically "hystical woman-ish" and The Patriarch's eagerness to suggest that I am, well, a hysterical woman, I'm going to come off as, well, YOU know...and that will not further my goal of getting everyone to LEAVE THE BABY ALONE and may even make it seem as if I am resisting recommended medical treatment for my child.  Which is very touchy ground, even with the HMO.
   Sigh.  Don't suppose any of you have any hard data for me on adverse effects of growth hormones on small children with genetic issues that appear to be metabolic and/or endocrine in nature?

this is the sound of silence

   My chickens, I have been neglecting you, and I'm sorry.  Truly I am.  I know that I have spoiled you by posting at least once a day for ages, but recently this blog has been strangely silent.  The sound of that silence inside my head though is more of a roar.  I talked to The EMDR Fairy about it today and we got to the bottom of what is going on (Eliza is freaking out and disassociating, less in a letting go of tanha and moving toward enlightenment way than a DSM-IV sort of way, and then we talked about why and she helped me to see what is actually going on).
   What is actually going on?  Well, I'm really (fricative) worried about our upcoming appointment with Dr. Tummyboutyourfeelings on the 26th.  I've talked about how pointless I feel like it is for us to even be going to see him right now; The Very Small Animal is doing very well right now, is the healthist thon has ever been for the longest period of time on record, and is actually GROWING and on the BIG-KID GROWTH CHART (a first!).  And I've talked about the "burning out on re-entry" phenomenon that has taken place as my health has (had) improved to the point that I am once again the MVP of Team Doolittle when it comes to the coordination of specialists and accumulation of lab results and other medical records.
   The thing I haven't talked about lately though is what my gut says about TVSA.  Since thons conception I have felt that TVSA was on loan, that thon would not be staying as long as the other two Animals, essentially that thon is going to die young.  I do not believe in premonitions or psychic phenomena, but that is what my gut has said since I got pregnant (and yes, I knew I was pregnant from conception even though given the vasectomy I had no reason to believe I might be--still, something in my head would say "this thing is going to be a bear to make when I start getting bigger" as I squeezed between The Large Animal's loft bed and the wall to put fresh sheets on it, and then I would think "WTF, inner voice?  Shut up!  I have a five-month-old!") and that is what it still says today.  Since October I've been worried about TVSA's facial abnormalities (or "dysmorphology" as it is called in the world of medicine), and we've worked with our geneticist to try and get to the bottom of things.  We did the MPS test after Helga Toriello, a dysmorphologist in Michigan who Dr. Shiva showed my "slide-show" of pictures of TVSA to (along with thons exact epicanthal fold measurements and symptomology), said that thon absolutely met the criteria to make a clinical diagnosis and needed the pee test for it.  The pee test was negative.  In your face, Helga.  But while we were, of course, VERY relieved that TVSA does not have MPS, that left us to deal with The Mystery again.
   And The Mystery?  It can steal your soul, y'all.  I even resorted to posting a list of symptoms on here to see if it would ring a bell with any of y'all recently, and while I WILL ask Dr. Shiva about Winchester syndrome next time I see her (thanks, Marie-Baguette, for the Googling!) I'm pretty sure we already ruled that one out. 
   This has all been simmering in my head recently, and then I found Gwendomama (welcome to the blog-roll, lady!).  Read this post of hers.  It will make you cry, but read it anyway.  I left her a comment, because it tore my heart in half to think of someone losing their child with The Mystery still a mystery and then going back and discovering that their beautiful baby (really, isn't he gorgeous?) shared many similarities with MPS-affected children and beating themselves up about it.  If you didn't read my whole long-winded comment, I basically said "yes, my child looks like an MPS-kid too, but tested negative, and maybe you DID do everything you COULD have done, and I'm so sorry."  And she very graciously got in touch with me and I e-mailed her pictures of TVSA and some more clinical details about our experience with the quest for answers, and some questions about her Elijah and his health before he died.  I thank you, Gwendomama, for writing about things like this, which will help me remember to listen to my gut in general even when it involves getting in people's faces and confrontations, and this, which only reinforced my feelings on the issue of growth hormones and TVSA, who is so very similar to her Elijah in so many ways that it hurts me a little, even as I am grateful for what I might learn from her terrible loss and how it came to be.
   And that brings us back to that appointment we have coming up about TVSA's feeding, and how I feel like we ought to just LEAVE THE POOR KID ALONE since thon is finally doing WELL for a change (right now at least), and I don't want to risk screwing it up.  Thanks to Gwendomama's wonderful writing and openness with her son's experience, I will NOT let The Patriarch's denial and the pedantic Dr. Tummyboutyourfeelings bulldoze me into doing anything that I think is not in my baby's best interests.  But I'm afraid it won't be pretty, and I'm steeling myself, and this is making me think about things like how children with my youngest one's set of symptoms and type of dysmorphology tend to die very young and all the battles that may entail, if it comes to it, over quantity vs. quality of life, and when to stop trying to FIX things, and owwww my neck I need some Xanax.
   So that is why there is silence on the blog, but I assure you it is not silence at all, it is my gut screaming "LEAVE THE BABY ALONE!" and my heart wishing The Patriarch would stop with the denial and my heart shattering into a thousand tiny pieces for my baby, and my husband, and myself, and the older two Animals, and for Gwendomama and her little Elijah, and wishing that so many things could be different in the world.

Dr. Patriarch makes a diagnosis

The Patriarch:  I know what's wrong with your neck!
Eliza:  Oh gawd.
The Patriarch:  I heard about this thing on the radio, where drunks sleep like retards!*
Eliza:  Excuse me?
The Patriarch:  Yeah, hangover palsy or something.  You sleep like a drunk, dead to the world, and then you wake up and (makes claw-like gesture) you're all palsied up like a retard.
Eliza:  If you mean cerebral palsy that doesn't have any connection with cognitive--
The Patriarch:  You LOOK like a retard in your sleep!  Like a dead fish.  Like you're lying down for a massage but there's no cutout place in the bed for your face so you twist your neck up and--WHERE IS MY BLACKBERRY?  SEE?  This is what you have!  You need to stop sleeping like that!
Eliza:  It's not enough that you tell me what to do every danged second of the day while I'm AWAKE?  Now you have to wake me up at night and tell me how to SLEEP?
The Patriarch:  I'm TRYING TO HELP YOU!
Eliza:  I think you just need to stay on your side of the bed.  Also?  You're going to The Hot Place.

*  I am not trivializing alcoholism or mental retardation (nor am I confusing either of the two with cerebral palsy); that would all be The Lord of My Liver.  By way of explanation, not that it excuses anything at all, HE IS FROM NEW YORK.  That came out of his mouth and it was like I'd just spent a night sleeping next to my mother-in-law.  Which made me need THAT MUCH MORE therapy RIGHT THERE.  Don't even get him started on sexual orientation.  Perhaps the fact that I, a former academic feminist and one-time political-science major with a terminal degree in Fine Arts, somehow ended up married to this man, is in and of itself a rather compelling argument for my being, at some point a little over eight years ago, either very drunk or else mentally retarded.**
**  Okay that time it was me, but here's the deal: according to The C(o)unty's Early Intervention team one of my kids is mentally retarded.  And if I can joke about it, then so can you.

just another ice-cream social

   Today The Patriarch's "team" at his workplace is being honored for some kind of fantastic accomplishment; this includes a photo-op to involve ALL team-members.  Unbeknownst to me, when this meeting was first announced last week, The Patriarch told a co-worker that he sensed "a disturbance in The Force," citing the way these mass layoffs tend to start with a meeting where everyone has to leave the building, and their key-card IDs being deactivated while they are AT said meeting.  A third co-worker came by and wanted to know what they were talking about, what about that meeting on the 19th?  The Patriarch, at the time, said sarcastically "Oh, nothing.  I was just saying I'm sure the CIO is going to throw us an ice-cream social afterward, that's all."  And so "ice-cream social" became a euphemism among the Cool Kids at The Patriarch's workplace for "mass layoffs."
   This morning, The Patriarch's Blackberry went off, with an update: after the photo-op, the CIO wants to invite all team-members to AN ICE-CREAM SOCIAL in appreciation of their hard work.

   I'm sure it's just a coincidence.

my happy place is fixed; my body, not so much

   Well you will all be pleased to hear that my happy place is (mostly) fixed thanks entirely to the generosity of The Hermit.  Who, it turns out, in addition to renting virtual properties, makes pose-balls, which are things on which your avatar can "sit" in Second Life, causing a looped animation to play.  You can put two pose-balls (usually pink and blue, although there are pink and pink ones and blue and blue ones too) out and sit on them to do everything from waltz to cuddle to have kinky group sex.  It seems The Hermit's poseballs are rather popular, and he finally said "look, I have 425,000 Linden Dollars; it won't hurt me any to give you enough to get back at least the basics," and when he put it like that how could I say no?  So my avatar looks like herself again, and has a new bikini, and all of her animations that allow her to dance, and that is a happy thing.  YAY!
   My body, on the other hand, is not a happy place to be at ALL.  The Neck Thing, after a brief initial improvement (for which I AM grateful, don't get me wrong), has plateaued in Sucksville, and now the entire right side of my back is in spasm, and I have burning nerve pain shooting down my right leg.  NICE!  Today The Patriarch had a moment of backsliding (behaviorally-speaking) and yelled at me about how I am not "helping myself" (which um, I go to the doctor and take my pills and go to therapy and do my guided meditation and take my vitamins and do my exercises, so Whiskey, Tango, Foxtrot?!?) until I burst into tears and finally I ended up taking some extra morphine (which always makes me feel really lame because it's MORPHINE and that's what they give to DYING PEOPLE for crap's sake!) and a couple of Xanax and door-clubbing myself into the master suite.  I just couldn't handle any more from him.  He's worried, because twenty-five people got laid off at his job last week, but that situation is not my fault (nor am I trying to imply in any way that it is his, just saying I DIDN'T DO IT), and also understandably frustrated with my health situation.  I get that, I really do.  Nobody hates that more than I do.  But his behavior?  NOT helpful!
   Also to be perfectly honest, therapy on Friday was pretty grueling.  The EMDR Fairy had me dig deep into my memories and pull out some really hideous things in order to take the fear out of them through EMDR, and I'm kind of emotionally hung-over.  The last thing I needed after bawling in my therapist's office about how my bipolar mother held me responsible for all that was wrong in our nuclear family was for my bipolar husband to hold me responsible for all that is wrong in OUR nuclear family, and yet there it was.  Sigh.
   Oh and to make things even MORE fun, Dr. UberEndo found my thyroid levels to be too high, and reduced my Synthroid dosage, also switching me to the generic form (which I hear isn't as good as the brand-name one) and now I'm having low blood pressure issues again.  Dr. UberEndo said to give it six weeks for my body to adjust and that based on the lab values I simply HAD to go down on the Synthroid, but DANG.  Not exactly what I needed health-wise right now.
   So I'm still sort of in hiding, because my life consists of the inside of my bedroom, the inside of my head, pain of every kind, and enough morphine, Skelaxin, and Xanax to euthanize a small pony.  Not the stuff that fascinating blogging is made of (getting casted for my orthotics aside).  I see The Nervous Wrangler on the 29th, and hopefully he will have something to offer by way of quality-of-life improvement because this just SUCKS, y'all.
   And how are all of YOU?

Linden Labs took away my happy place!

   In therapy, The EMDR Fairy sometimes has me think of my "happy place."  My happy place is virtual, because my real life is way too cluttered and painful and transient to find any one particular place to breathe and relax.  So my happy place is in Second Life, on a beach, by a little peasant hut, surrounded by beauty.  I sit and meditate there alone, and listen to my Guided Imagery CDs, and I look DARNED GOOD while I do it, too.  My avatar never has a sore neck or gets bloated, and she can sit in the sun for as long as she wants to without anything bad happening to her skin or her kidneys.
   But yesterday a tragedy occurred in my happy place--Linden Labs had a brainfart of some kind and MY INVENTORY DISAPPEARED!  In Second Life, your Inventory is where you keep things like your skin, your eyes, the way you walk and dance, and of course your clothes and jewelry and such.  And three-quarters of mine is GONE!  The glitch seemed to prefer my favorite designers and most treasured objects, and it wouldn't be such a big hairy deal (not, mind you, that ANYTHING that happens in SL is really a Big Hairy Deal, but suspend disbelief with me here for a moment) except that most of my Inventory was amassed while I had a job and a credit rating and disposable income, and now I have none of those things, so most of it will just have to stay gone.
   Sigh.
   Probably this is a good lesson in how even VIRTUAL tanha junks up your karma, and turns even your SECOND life to dukkha, but I am unamused.  I want my distractions back!  I haven't said anything to The Patriarch, because he'll probably be glad--he hates SL and is convinced that I do nothing there except sell my cyber-arse and wallow in (virtual) venal sin.  And if I'm going to complain to anyone in my REAL life it'll be about something much worse than losing my pretend stuff, but here on this blog?  WE ARE IN MOURNING!
   So much for my happy place!