Jumping Jumping Jumping

Avery just can't seem to get enough of 2 things these days: Jumping & Kate. So this afternoon was like heaven for her, jumping with Kate. Also painting with Kate, riding around the deck in the pretend box car with Kate, and eating "banana popsicles" with Kate. Good to get a Kate fix every day or two!!

Jordanigma

Jordan on Day 1 of her ACTH treatment -- look how skinny she was then!

Jordan today, 43 days into the treatment, and PUFFY.

Growing out of her clothes at record pace, and a real handful to hold and carry around. Jordan sits on the deck "watching" Kate & Avery paint & jump while getting some snuggles in with Nana Noma.
Jordan's other health issues are not helping us relax & focus on getting her through the day. The mysterious UTI and the enigmatic crystals in her urine have jumped to the forefront. I spent most of my waking hours today on the phone talking to doctors and laboatories, coordinating lab orders, and scheduling appointments for more tests & imaging, mostly for her kidneys & bladder. There are now 5 doctors looking at the crystals in her urine trying to make sense of them. One of the docs is new to the team, and when he heard the summary of Jordan from our pediatrician, he actually asked to see her and work with us for a diagnosis. He's a well respected geneticist from OHSU, so we'll see if he has any ideas about Jordan's condition.

Check out those cheeks! They're amazing. Now, if only her brain would grow at the same rate. Or at least at the same rate as her eyelashes (which are now just bizarrely long).
And speaking of geneticists, our doctor at UW called and is ordering more tests. He admits he's just trying to rule things out, because the tests he ordered don't really match her symptoms at all (Prader-Willii Syndrome & Carbohydrate Deficiency Syndrome). We're really dredging the bottom of the barrel at this point. I guess he must have a plan, even though I don't understand it.

As usual, back to the drawing board. Nothing about this kid is usual, even her symptoms don't seem to follow conventional wisdom. So the more docs the better -- maybe somebody will be able to recogize something new, or something rare. It's scary to think about getting a diagnosis for her, since many things are so scary to have. But in a way it'll be a relief to know what to expect.

Jordan's tummy time seems to help reduce the screaming, but she spends most of the time flailing her head around and rooting like a newborn. At least it's basically quiet activity for the most part.

Grandmas & Grandpas & Nanas, Oh My!

Snuggles for Nana Noma, smiles & screams & multi-tasking, too (Nana Noma reads the funnies, too)









I just don't know what we would be doing without all the help! Nana Noma has practically moved in over the last few days to help with the Jordan-care shifts. And that means not only feeding & holding Jordan (to try to reduce the screaming), but playing with Avery & helping feed us all. It's crazy around here with a house full of exhausted, stressed-out, worried adults, and a rambunctious, well-rested 2.5-year-old. We need all the help we can get.

I've almost fully adjusted to staying up all night, then sleeping from ~0700 to 1100 and then again from ~1800 to 2200. If I'm lucky I get an hour or two in the middle of the night. Devon has to wear earplugs to sleep, and for the last couple of nights Nana Noma has slept in the guest room as back-up, in case we need her. She takes over while I sleep during the day & while Devon is at work. It didn't really help that Avery's daycare was/is closed this Thursday & Friday, at the last minute, for personal reasons. It also isn't helping that Jordan is having new and different health issues I'm trying to sort out when I am awake during the day.

In other grandparent news, we're really looking forward to having Grandpa Earl & Grandma Linda so close. They made it to Hope, BC on Saturday, a week ahead of the moving van with their furniture. Not particularly interested in sleeping on the floor of their new, empty house for a full week, they came down for a visit and to reclaim their RV. They arrived on Monday evening, and left on Wednesday morning, after a fun visit & a great dinner on Tuesday night. Linda also loaded up the freezer with oven-ready chicken parmesan for us (yum) and took turns holding Jordan & being entertained by Avery. Grandpa Earl got a bunch of errands done for the RV, and he & Avery had more great adventures in our "nature yard." They left in the RV on Wednesday morning so they can live in for the next couple of days & get it registered in BC.

A huge THANK YOU for everything, Nana Grandma & Grandpa!!

And The Hits Just Keep On Coming

It was another crappy day at the doctor's office today. On top of the bleary-eyed exhaustion, frazzled nerves, and headaches that rules the house right now, the health issues just keep stacking up. Based on this week's lab results, Jordan's urinary tract infection is more serious than we thought. Her sodium & chloride are also a little low. Her platelets are high. We didn't even really get to the blue legs, but the fevers and cold sweats are probably related to the infection. Perhaps there is another infection we haven't found. Hopefully the augmenten and the antibiotic shot she got today will take care of the infection(s). On a more positive note her blood pressure is back down to a good, livable range.

Once infection-free Jordan will have to have an ultrasound and some other tests to see why, at only (almost) 8 months, she even has a UTI. Even if she were perfectly healthy otherwise, she would be having these tests, as a UTI is not really expected for anyone her age, even on these medicines. UTIs are very worrisome in babies, and usually indicate a bigger problem than just the infection. Perhaps her kidneys are not formed correctly, or working correctly. It's possible that she will have to go on a profilactic antibiotic to try to keep them from getting infected in the future. It all boils down to more tests, more doctors, more things to worry about, and more things to go wrong.

The lab report stated that, in addition to the infection (which they are culturing now), there are unknown brown crystals in her urine. So far all the docs are stumped on what they are, so they're referring to a specialist. Hopefully we'll know by tomorrow, or at least the next day.

I'm holding out for the humorous result, though. I told them that I was the one that collected the urine sample, by sticking the collection bag to her privates while sitting on our sofa, then cutting the bag open with our kitchen scissors to pour it into the plastic container. Not exactly "sterile" conditions. The brown crystals are probably chunks of Maple & Brown Sugar Frosted Mini-Wheats from my breakfast. It's not my fault if they go on a wild goose chase over those.

In the end we were at the doctor's office for 2 hours. At least we can't complain about our pediatrician. She is an honest, caring, smart doctor, who acknowledges her limits and treats us respectfully when we ask questions or when she is explaining things. She's a great "project manager" for us, keeping on top of doctor appointments, labs results, imaging results, and all the other little tidbits. She even offered to put together our file & a cover letter to make it easier for the new docs we're trying to get scheduled with across the US. She calls on weekends and evenings to find out how things are going or to give us test results we're waiting for, good or bad. We never feel rushed, and know that she's given up more than one lunch to meet with us (as was the case today). We're very thankful to have her help and guidance through all of this (thanks Kelly for the research and recommendation!).

ACTH countdown: 42 days down, 6 to go

It's A Jungle Out There

Avery has been Nana Noma's right-hand-gal all spring and summer in the garden. Digging holes, planting (all over the yard, not just in the garden), spraying water (usually on nana), and picking the harvest (then popping the pickin's straight into her mouth) have kept the pair busy all summer. For the second summer in a row, nana's tomatoes have grown into a jungle, and the zucchinis have gone bananas. Also prolific: peas, cucumbers, carrots, beans, crook-neck squash, and even a pretty good sized pumpkin (that hasn't turned orange yet).

Then there are the cherries, apples, & pears in the trees. Unfortunately, Nana Noma is the only person in the neighborhood without a dog or two, so the neighborhood racoons decided to live in her yard. The pears are a write-off, each one with a racoon bite, then tossed to the ground. Such a waste for us humans.

I always seem to forget just how great homegrown vegetables taste, compared to what you get in at the supermarket during the non-summer months. Yum!!!

A little bit about the outfit: 2 leotards, she tried them both on at the same time, and is trying to decide which she likes best for her gymnastics class that starts after Labor Day. The red boots were just for FUN!!

In the beginning. . .

Reaping the benefits of a summer of gardening TLC. It's pretty clear to me that, like the knitting gene, the gardening gene skips a generation (hey, at least I can't be responsible for dead rocks!!)

(Re)gressive Behavior

Feeding, feeding, freeding. Screaming, screaming, screaming. We are now on Day 41 of ACTH, mid-way through the weaning process, and all the craziness is really taking a toll on us. Basically one of us has to be with her 24/7, so Devon & I are back to full-blown exhaustion.


Watching the sun rise -- something I can really appreciate since it's against my natural bio-rhythm to be awake at such a time in the morning. However, lately I've been seeing lots of these. . . . (Note to parents, the whole night owl/early bird phenomenon is biological & real, not just bad or obnoxious behavior. So let your kids sleep in, and don't consider them lazy -- they'll get their stuff done in the evening while you're snoring away before Law& Order even starts.)

This is part of the reason we're so bummed out these days. Jordan has regressed many months in terms of development, and I really hadn't appreciated how far she has come until now. They are subtle differences in her actions, her behavior, her muscle control, but important ones nonetheless. And now they're gone!?! Her health isn't that great, either. Cold sweats on her head, face, shoulders, while having purple legs that are NOT getting enough circulation, lots of Tylenol & leg rubbing to try to control that. A urinary tract infection, probably due to the supressed immune system (I think we'll be lucky if this is the only infection she gets during this treatment), for which she is on Augmenten. Frighteningly high blood pressure, which, thankfully is now basically under control with a drug called Lasix. Diarrhea from the Augmanten, and probably dehydration, too (we're off to the pediatrician tomorrow to review her latest set of lab results to see if we need to "fix" anything else). And although she isn't full-on barfing like she was in the spring, she's always wet due to contant gurgle spit-ups. It just seems so strange to me to put the milk directly into her tummy, yet see it drain out her mouth. . . reverse plumbing I suppose.

One amazing thing to me is that Avery sleeps through all of this, even when her door is open. Hallelujah!! And it is LOUD screaming. Jordan's really found her voice, finally, but this isn't the way I would have chosen to go about it.

So, that's mommy's bleary-eye medical report for Jordan, from the pre-sunrise hours of the night.

Look Mom, No Hands!

It's a bit institutional for my liking, but I'm getting used to taking advantage of the hands-free feeding system for Jordan. If she's sleeping and it's time to eat, game on. Just load up the bag, hook up the tube, and turn on the peristaltic pump (I didn't even consider that these would be used on people and not just for shallow groundwater sampling). It's been so long since anything around here has been hands free I don't know what to do with myself. Of course there are a million things that need to be done, so I guess I better take advantage, and get as much done with my 2 hands as possible.

Straight from mommy's special grocery stores, to the freezer, to the tummy: getting Jordan fed is truly a modern process (rather than a simple, natural system). Hey, whatever works! [Yes, the freezer is full to the bottom, solid, we're defrosting right now from mid-June].










Look mom, I'm growing so fast on these steroids my toes are popping right out the end of my pjs.

The Faces of a Child

I once heard, from a not necessarily reliable source, that the average number of "faces" a child can make is 27. The average number of "faces" an adult can make is only 4. This seems to suggest that somewhere, while growing up, we lose the ability to put an appropriate "face" on a particular feeling. Either that, or we've lost a particular feeling, and no longer need a "face" to match. I prefer to believe the former, and have personally tried on many occasions to restore a lost "face" as appropriate.

A good photographer realizes this, and is able to capture all emotions, not just the smiles and laughter (although those can be great shots in particular). As a parent I know that I want to document every tiny detail about my children before they grow, and change, and disappear, or evolve into new details. There are so many! I don't stop to think about them too much, until I see them captured in a photo.

Here are some of my favorite pictures recently snapped by my dear friend Kelly. They mean so much to me it's beyond words. The smiles, grimaces, grunts, frowns, furrowed brows, you name it, she captured it. I've spent days looking through these photos trying to pick some favorites, and I'm not even sure that I can. And even though I'm not necessarily thrilled about sharing some of the stranger or grumpier "faces" of my children with the world, I do want to keep them for myself as cherished moments of their childhood -- before the faces are gone.

I hope you enjoy these pics at least a tiny bit as much as I do. And what can I say to Kelly besides the biggest THANK YOU in the world.

The Faces of a Child -- live from our home

You Oughtta Be In Pictures -- with the setting sun at Fort Vancouver

The Rhythm of Life

(All photos in this post by my dear friend, Kelly Wood)


Life is a rollercoaster. Some days are good, some are bad. Some months are better than others. Some years you wish you could relive, either to experience their joy again, or to replace them with something better. It's no different for you or me, we're all just doing the best we can.

For me, doing the best I can means taking care of my girls and keeping busy. I'm still feeling pretty awkward about not working (as a geologist) -- I miss the intellectual and interactive side of it. But at the same time, I'm not really at a place in my life that I care to go back to work. My mind is too cluttered with more important things -- my family. I guess I'll continue to live vicariously through Devon's work, and try to keep my mind semi-sharp by listening to his daily dramas as a consultant. I really appreciate that we have similar careers, so that I can feel like I'm keeping involved in the industry.

Keeping busy is important for me. I'm not really very good with free time, as most of you know. It's important for me to get out of the house and go places, interact with people, and "get things done." Despite the extreme sleep deprivation of the last week (thanks to Screamer Rowe), we have been keeping busy. Campfires & tents in the back yard, a visit from the Sarmasts, playing with Ed, Kelly & Kate, mini-golfing with Avery, doctors, labs, & blood pressure checks (okay, do those really count? They certainly get me out of the house, and since I know the healthcare professionals so well now it's becoming quite social as well). I've also become very involved with a couple of on-line Yahoo Groups, one dealing with Infantile Spasms and another for Undiagnosed Syndromes. I've learned a lot over the last couple weeks from these groups, none the least of which is that we certainly don't have it THAT bad. There are others out there with stories that wrench my heart, and they get up and get going each and every day, doing the best they can as well. What else can you do?!

However, all that business (i.e.busy-ness) caught up with me today. Devon & Avery headed out to the new Firstenburg Community Center for swimming, water sliding, and splash-padding, and there was just no way to drag Jordan & I along. Taking care of her is just sooooooo much work. We realized awhile ago that it's going to have to be one parent/one kid for quite along time. So, Jordan & I hung out at home, and that's perfectly okay. Such is our life. But it did give me time to mull things over, which inevitably lead to sadness. Remembering the dreams and expectations I had of a two-child family. Imaging the fun Avery & Jordan could have as sisters only two years apart. Wondering why this had to happen to Jordan, and pretending that it's all okay because she will never know how to be any different than she is. Hoping that one day she'll be able to tell us how she feels, whether it be happy or sad, tired or excited.

So today I cried. I cried about the decisions, big & small, that Devon & I have to make every day. I cried for Avery & the adventures she will miss out on with Jordan. I cried for all the time & money we spend on doctors and medications, and caring for Jordan, instead of being able to just play with the girls. I cried for sending Avery to daycare 3 days a week so we can take care of Jordan and all of her appointments. I cried at the ever-present idea of loosing Jordan next month, or next year, or before she's 10. I cried in frustration -- not knowing what to expect next month, or next year, or for Jordan's whole life. I cried looking at her feeding tube, and especially at the hospital-style feeding pump & apparatus in our living room. I cried because I really don't know what to do to make her happy, or make her feel better -- it's all just a guess. I cried over logistical things, like what are we going to do with our 2-story house if Jordan is never able to walk up and down the stairs? The downstairs has always been slated to be the future music room/play room. Now that plan seems out the door. I cried at the thought of having to sell this house for a 1-story model, for giving up the dream of raising our kids in this neighborhood after remodelling the house into our own little haven. I cried for all the work Devon has to do, with his job and his family to keep everything going in our household, and the constant stress that puts on him. I cried for not being able to spontaneously jump in the car for an afternoon or weekend adventure. I cried for the time that Devon & I don't have to ourselves anymore, to go out to dinner or catch a movie. [Of course people do offer to take the kids so we can do that, but believe me, it's really tooooooo much work for us to be gone for more than a very short amount of time, and it really is a lot to ask from someone, even if they offer. Especially right now with Jordan's ACTH treatment & side effects, and medication schedule, and feeding apparatus.] And when Devon got home and Avery was sleeping, we cried together.

Of course many of these things have a positive side to them: The compassion Avery will learn growing up with a special needs sister, the excitement of building or remodelling another house just to our liking (perhaps on enough land for a couple of horses & other outdoor animals), the ease of hands-free feeding, the special one-on-one time Devon & I carve out to spend with just Avery, the friends Avery makes & the things Avery learns at daycare, and all the time we do dedicate to Jordan, and how well we know her because of it.

I realize that although days like today aren't particularly fun, they are necessary, and constitute the lows on the rollercoaster of life. Without the lows, we could not possibly have the highs.



So tonight I'm hoping for some good, restful sleep, and a happier day tomorrow, for all of us (especially the Screamer).

Fun in the Sun

After 3 postponments (darn summer colds & doctor appointments), Heather, Sam, & Katie finally made it over for our playdate. Sliding, swimming, sliming, jumping, drawing, and eating. Hopefully the illnesses are gone & we'll be able to get together more often. Lotsa fun!

Shake your booty! If you can move it, that is. Katie models the newest fashion in non-swimming diapers, which we all think is pretty hilarious. Soon Katie was barely able to slide or hoist herself out of the pool with it.

For more pics with the Sarmasts, visit our website.