The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Monday, August 29, 2011

And in the meantime...

Caleb had his first day 9-3 at primary one today, so he is truly a "Big Boy" now. He loved it, got a sticker for being quiet (!) and one for being a good boy. He sang me his "Annie the apple" song tonight, obviously the first step to learning his phonics. He ate lunch with Andrew (his school buddy) and Alexander. He saved his granola bar for his afternoon snack. I am so proud of him.

Adam had a special day today too--his 8th birthday!! They had a party for him at school, they sang to him on the bus, and we celebrated tonight with cake and a massive, musical extravaganza of the Happy Birthday chorus complete with all the instruments we could find around the house. He loved it.
Here he is in his cool duds, while my friend Cammy Moore took photos for us over the weekend. She's seriously good, I can hook you up if you want to see for yourself!! The top pic is one from her too.

Agnes worked on her sitting up, her eating, her next two teeth, her nap, and was a beauty to behold all day. As you can see in this photo, also by Cammy.

And since all good things must come to an end, I'm off to bed. Hope I left you with a smile! :)

Thursday, August 18, 2011

First day of school

For those who have been following the blog, a little bit of sunshine for once!

Yesterday was Caleb's first day of school, and he looked so handsome in his uniform! Adam too had a joyous return to school this week, another handsome uniform and some beaming smiles to go with it! No matter what happens, it was worth it to see his face when I did the "school" sign.

He is doing really well, and today went to school after his lumbar puncture this morning. Another sign our life has changed: becoming blase about general anaesthesia ("it's only a lumbar puncture today")! The port they put in last week is working beautifully, and healing well. The doctor even said that he can go swimming after the needle comes out! Tomorrow is two doses of chemo after school then a week off. We are so grateful for some normal in our lives, almost don't know what to do with it!!

Agnes is settling in too, learning to sleep better and definitely keen on the whole eating thing!

Here is a pic of the boys, one blond and one fuzzy, both blinded by a sudden patch of light:

Thursday, August 11, 2011

Re-port (get it?)

Adam's blood counts returned to "normal" earlier this week and his fevers subsided, so he was discharged home from the hospital on Tuesday. We had one blissful day off, and wouldn't you know we spent it dodging the pouring rain! That was a short reprieve, however, and today was back to the grind.

It has been a long day, filled mostly with fasting and watching elevator doors, our increasingly familiar pre-surgery routine. Today he was in for his port to be fixed, have a lumbar puncture and restart chemotherapy with a drug called Methotrexate injected into his spinal fluid. We waited until 3:45 before he was called to surgery, and into the early evening before he came back. I marvel at how difficult it still is to send him in for surgery, even when we've done it almost weekly for nearly two months now. I do hate waiting, and this last few weeks has been a crash course in would think it gets easier, but really it only gets slightly easier to mask how not easy it is! Waiting for doctors, nurses, surgeons, pharmacists, medicines, procedures, elevators--it all makes me a little bit crazy!! Mostly I find I am waiting for information and (hopefully good) news that comes slowly, in drips and drabs. Add in a sweet wee boy who doesn't understand why he can't eat, why he has to get another needle in his arm, why he has to go to that room again (theatre), why he has to take medicines that make him feel's tough to explain and even tougher to live.

Back to today: the surgeon could not fix the port, and ended up putting a new one into the space under Adam's left armpit. It's not the most convenient of sites, and Adam seems quite sore, but if it works that is all that we can ask. So far, so good. A spot of dinner, some pain meds, and an hour or two to make sure he's fine and the boy will come home again for another good night's sleep in his own bed. Tomorrow starts four days of IV infusions and then two days off.

California Oma arrived today, and was immediately plunged into the deep end, taking a taxi to the hospital, taking turns on the playground with one child, then another, then waiting for Adam to come back while I dashed around town to swim lessons, hang out washing, and come back. Whew. We are tired. If that's not a good way to deal with jet lag, I don't know what is!! We are surely grateful for the extra hands, and hopeful for what the next three months of her visit will bring.

Monday, August 8, 2011

Monday morning

I've been reading a book called The Winter of our Disconnect by Susan Maushart, a journalist living in Australia who tried an "Experiment" with her three teenage children--giving up all media for six months (and all electricity for two weeks at the start as "boot camp"!) It's a great, very enjoyable read and an illuminating look at how dependent our culture has become on our iThings to live our iLives. I totally get that.

Then over the weekend I went and bought a Netbook and printer. And yesterday I sent off my HTC smartphone to be fixed and promptly felt the sting of being disconnected. What an irony!

However, being consigned to the hospital for hours and days on end has a funny effect on one's productivity and social input. I'm more fond of BBC news than I thought, more chatty with the nurses than I was before, and convinced that I will "get stuff done" with a computer in the room. Really, I'm just lonely and being stuck with my own thoughts and worries for too long is not healthy. I'll admit it makes me feel better to have "access", and I've told myself that I can do more blog updates while I'm stuck there (oh, yeah, and some work too!) know, Adam as my muse and all that.

As of Sunday at 5pm he was looking better--still had a fever but it did not go as high, and his neutrophils have climbed to the dizzying heights of 0.3!! Keep in mind, this IS an improvement! He seemed in better spirits, wanted to sit and watch the lifts (elevators), walked with sister and I to the play area, asked for Mr general he seemed as close to how he was at the beginning of any time in the last 4 weeks. What joy!!

Having said that, when I gave him a bath I saw all of his war-wounds: the port site, still the subject of much discussion and speculation, the red lumps where he's getting his heparin injections, the many track marks of blood-letting, the bruises, the tiny, skinny legs and arms and bloated belly, and of course--and most distressingly--the hair coming out in fistfulls. You can now see more scalp than hair--but it's a cute scalp for sure!

All this is par for the course, and again we press on. I am ever hopeful that the docs might let him home for a couple of days soon. A lot will depend on how things go with the port this week, and of course I'll keep you posted. AS it happens :)

Thursday, August 4, 2011

No news = impatient!

I had thought I would wait to blog this week so that I had more to say. Turns out there isn't much more to say!

Adam was readmitted to hospital on Monday for a fever, started that evening on IV antibiotics and some fluids. Turns out they can't find the cause of the infection as blood cultures are still negative, but they are covering him with both antibiotics and antiviral medications. His port site looks good, but the doctors still can't get it to work, i.e. to give blood back. Fluid goes into the port, but one of the main reasons they put something like that into a patient like Adam is so they don't have to continually stick him with needles. That really is our proverbial thorn just now, as poor Adam has been stuck so many times he looks like a bruised pin cushion! They have put some "clot buster" stuff into it and tried it again today with no luck. The next step is to have the surgeon look at it, and we have to decide whether to have them try to fix it, take it out and put in another one, or take it out and put something else in instead. As you can tell, any of those options involves Adam going to surgery again, which he can't do in his current state of infection and very low blood counts. So we are again waiting for his body to pick up before we move on to the next step.

His tummy seems to be bothering him, and we don't know if this is a side-effect of the chemo or a possible bug. Again, time and the sample taken today will tell. I did feel both sorry and proud of the young doctor who took it...sorry because it was some stinky poo to scrape up and put in a bottle, and proud for the same reason! They really are a nice lot in this hospital, and even when the lines of communication are a bit muddled, they still like Adam and try their best. You can't ask for much more (though we often do!!)

Tuesday evening was our anniversary, and we celebrated it with take-out Chinese food in picnic fashion around Adam's bed. While it was a bit rushed and punctuated with drugs being given and nappies changed, it still seemed fitting: what better way to celebrate 14 years of marriage than by caring for our son who looks like a little old man along the way? I am grateful that we have the chance to be with him and care for him in our own ways...Brian is doing the nights, and I (and Agnes and Caleb) the days. It is a long old life, and I look forward to having Adam home again, though with the speed that we're getting to the bottom of all this, it may not be soon.

Monday, August 1, 2011

Hospital again

Adam is back in hospital tonight for a suspected infection. I noticed he felt warm this afternoon, and when I checked it his temperature was high enough to have to call the medical ward. They asked for him to come in for blood cultures, so I packed a bag for he and Daddy and off they went. It was a shame since we had just come home from the hospital to have Adam's blood drawn ahead of tomorrow's lumbar puncture. I suspect now that the LP won't be done until they know what is going on.

I still haven't heard from them, which means I don't have any update. I suspect they are having as good a sleep as possible in the hospital, with Adam hooked up to fluids again after a dose of IV antibiotics. I'll keep posting news here as I have it...for now we rest and wait.

My prayer tonight is for a sense of calm and peace, for rest for Adam and Brian, for clear results from the blood cultures so that the docs can treat Adam quickly and effectively, and for strength for Adam's little body, already going through so much.

It may well be a full week, but I'll try to update again soon.