Good news finally!

Well, after 17 long days we have finally taken Adam home for what we hope will be the last time in this most recent round of hospitalisations. He is over his infection, done with wheezing and nebulisers, has been to school two days in a row now, and is to all outward appearances our happy, healthy little Adam again.

The reason I hope this will be the last time is that I jumped the gun a little bit and took Adam home before the doctors were fully convinced that he's medically safe, before they were quite ready to send him home. That is because Adam has still been requiring oxygen at nights to keep his oxygen saturations in the blood up to a normal level. It's been like this for a week now, with him well during the day and still needing a trickle of oxygen at night. But last night the trend was clearly up--by morning, when he was still deeply asleep, his numbers were at 88% instead of 80%. That, my friends, is good enough for us.

We don't make these decisions lightly, but we have had to make them many times in Adam's short life. Always it's a mixture of trend, how Adam is in himself, where we are physically and mentally and what the family needs. While we readily admit that Adam's safety is of utmost importance, so too is letting the family be together for dinner and breakfast! For many boring and detailed reasons I think this is genuinely a trend upwards for him and not some underlying problem, and we believe he is safe. But they did send me home with a monitor just to check, and strict instructions to come back if they are too low!

And, as I remind myself regularly when I feel badly for disappointing a doctor, Adam is alive because I disagreed with a doctor on day 4 of his life, so sometimes sticking to your instincts is a good thing.

Whew

Just wanted to say that we are officially on the mend from dose number four: six days in and Adam's numbers are starting to go the right way again. This one has been the hardest, with his mouth and the skin on his bottom the hardest hit. We rapidly assembled a host of salt water, bicarb, gels, foam spray, creams, lotions and special pain relief of the opiate variety to treat Adam's pain, and it seems to have helped him get through. Not much hope that dose number 5 won't send him over the edge again, but at least we are prepared and at least that's the last one.

Now let me brag for a minute: the doctor today said once again that they are impressed with how well Adam has been doing, and with how much he's taken during this course. Adam has been able to tolerate more doses so far than many children do, even those without Down Syndrome.

So there: if you're going to have an extra chromosome, you might as well have it made from steel.

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.

Surprises

This morning I got a huge surprise when I was getting the boys ready for school. I was helping Adam get dressed, and Caleb, as usual, was delaying the process by wanting to play hide-and-seek: "You count and I'll hide, mom," as he flops down in his bed and pulls the covers over his head. I dutifully started to count, "One..." admittedly in a bit of a monotone as this is a very common game, when all of a sudden Adam's eyes lit up. "Two, three, four, five. Yeah!" He was clearly counting with me, and seemed quite proud of himself when he got to five, clapping and smiling. It was amazing, and very humbling, as I had no idea he could do that. We have been counting all afternoon too, and he really seems to enjoy it.

If you heard any of the words on their own you wouldn't know what he was saying, but his inflection, and the fact that he stayed with my timing too, showed that he knew what we were saying. Needless to say this gives me a lot of hope. It makes me think of his summer school teacher in Durham, Ms Jen, who very emphatically said to me that Adam is capable of learning a lot, and should not be underestimated. How right she was to say that.

This of course comes on the same day that we got a letter home from school saying that Adam would be moved up to Primary 3 after the summer. That's a jump from Primary 1 to Primary 3 for those who aren't up to speed, i.e. going from first to third grade. This is apparently a city council policy that children should be grouped according to their age category. This is also entirely ridiculous and will be fought by me every step of the way. There was a reason I held Adam back, besides the fact that we went to the states for a year. He was not ready, and still is quite developmentally delayed. They are already having "trouble" with him in his current year, so I don't see how moving him two years up will help matters. I'm not sure how to go about it, but believe me, if the boxing gloves have to get dusted off (they never seem to acquire much dust anyway!) they will.

Following on from yesterday's tests, there is nothing new to add. Bit of dried blood in his ear canals still, but otherwise you wouldn't know he had anything done yesterday at all. I still find his hearing a puzzle, but we've learned enough in nearly seven years not to take the doctors too seriously, and to take seriously instead that Adam is thriving (counting even!)

One more little surprise, albeit a few days old: Adam has his first adult tooth coming through!! It's a bit of a snaggle tooth already, poking up from behind all of his four bottom middle teeth that are ground down to the gum and still very firmly rooted in place. I tried to get him registered with a dentist, but the one I called specialises in cosmetic dentistry. Maybe something to think about for the future, but obviously not the right call just now. Will have to wait, hopefully not a year, for an NHS dentist instead.

That's all for now...time to read and enjoy the evening sunshine (for another 2 hours!) (and it's quarter past 9pm!)

Proof of why you shouldn't take tests

We had Adam's hospital appointment today for his hearing test under anaesthetic, which went pretty smoothly overall. The totally disappointing fact is that we know absolutely no more now than we did 12 hours ago before he was doped up and gassed out.

Despite being without a hubby this week, everything went well this morning getting to the hospital. Caleb was dropped to a friend to play with her daughter before going to nursery, and Adam and I had our pick of parking places at the hospital (not a common occurrence!) and pitched up at the desk at 8am exactly. By 9:10am he had the eye drops and pre-med, which left him as dopey as if he'd been smoking something very wacky. Dopey, but cooperative. I didn't stay for the "going under", since that's not really my favourite part of the whole event. One hour later the doctor was at Adam's bedside to explain what they had found.

To summarise the details, both ears had lots of wax which was cleaned. Both ears were free of "glue" or liquid behind the eardrum which clouds hearing, and because of this the tubes were removed from both of Adam's ears. The right eardrum has a small hole in it (why? I never found out either) but it shouldn't cause any problems. Thus, the final result: both ears clean and dry, no tubes.

Then for the hearing test result, and this is the kicker (am I watching too much World Cup?): He had no response in his brain to anything up until 100 decibels. Adam can obviously hear to even the most casual observer, but his hearing tests show him to be profoundly deaf. Having quickly researched it, 100 dcb is equivalent to a snowmobile or a motorcycle. The doctor trying to explain this to me was as baffled by it as I am. What does this mean?

What it means, he surmises, is that Adam's brain must have developed pathways for sound to travel that are different from that of a normal person's brain, and therefore do not show up on their tests. In other words, and as he was kind to admit: They don't know how Adam hears. I guess now that I think about it, we are farther along from this morning. We now know to look at Adam and go by what he is doing rather than what the tests and experts determine. Hmph. Should have known that all along.

We were home by 1pm, and met up with brother for a quick lunch. Then, because it was one of those rare beautiful and warm days, we headed for the beach. We spent all afternoon on the sand and at the playground, had an ice cream cone, and came home to drop two tired boys in the bath and in bed. Sigh, job well done (or at least done)!

I do have to say that Adam, despite having been gassed out just a few hours before, put on the most stellar show at the beach that I've ever seen. He managed to strip off all his clothes and out run me down to the water, nearly diving in head-first! This is the north sea, after all, sun or no sun. To be honest, I think he may have had the edge because I was laughing so hard! :)

When the cat's away...

Brian left tonight for Oxford for a week. When I told this to someone today at the park, she asked if he "must be really brainy" to be going to Oxford. I leave the answer to that to our collective imagination! Of course, no sooner had we dropped him off at the train station and come home did I see all his toiletries laid out on the bathroom counter, neatly waiting to be packed! So much for brainy! :)

I'm well on the way to my first mark of wildness when Brian is away: it is nearly 10pm and I haven't even begun to wind down for the evening. Usually we go to bed by about this time, but when he's away I don't seem to hit the sack until at least 11pm. I do pay for it, but I find that I enjoy the quiet and the space to just potter about by myself. I get so little of it anymore that every stolen slice of time is worth savouring. A week stretches out before me with hopes of a girls movie night, a BBQ with the youth (with sitters for the boys), time to finish my book, time to work, and time to watch old TV shows on the computer while I iron all the shirts Brian will need when he comes back! See, even when the cat's away the mouse doesn't forget about him. :)

My second mark of rebellion was not buying any salad at the store tonight while stocking up for the week. If I don't have to eat it, I'm not going to eat it!

In all seriousness, the week does hold some logistical nightmares, like Adam's hearing test under anaesthetic which is of course scheduled for Wednesday, and which I hope and pray is finished before the sitter has to leave! It should be no problem, but with these things you never know. I'll be praying for a smooth transition into hospital, a complication-free time with the anaesthetic, and for the doctors to truly get a sense of what is going on with Adam's hearing and vision (yep, it's a double-up of systems here!).

Also, I'm trying a little experiment this week and going gluten free with our food. I've thought about doing it for a long time, and have toyed around with it before, but never given it a serious go. There is so much debate about whether or not it works or helps, but I figure that even if it helps Adam a little bit, I owe it to him to try. You can read the best article I've ever read on the topic here. In it, a good friend of ours is the anonymous Philadelphia friend who talks at length about their search for the "right" diet for their daughter. I owe my new interest partly to he and his wife, and partly to the Horse Boy event last weekend. If I'm going to take Adam's Autism seriously, I have to also take seriously that even little steps I take might help or hurt him. I will post an update here in a week.

Finally, no scratch that. Adam is still up, and obviously still hungry so I'll leave it for now. But I do want to say that I've laughed more today than in a while, and I have the boys to thank for that. It's a good time with them, and I am looking forward to summer and all that it holds.

There we are

Let it never be said that Adam is not a smart boy. He may have earned himself the nickname "Bogey-nose" from the kids who ride on his daily school taxi, quite legitimately too, but he is still a smart boy. He knows what he wants and can now ask for it. And he also knows what he doesn't want, and every last ounce of muscle in his little body, approximately 45 pounds of it, will protest to the bitter end. I guarantee you if Adam is not inclined to do something, he ain't gonna do it.

That includes visits to the doctor, though this is not a new thing. Today was eyes, and I knew right away that he wasn't going to "look at the pretty ducky" for all the persuasion in the world. Luckily we had a nice practitioner who, rather than get annoyed, helped me think through how we might get a good result with Adam for next time. Secretly, I'm not sure there will be a next time.

After all is said and done and we're home watching Cars (again), I still find myself in the position that I hate: figuring out what is worth doing and what is not when it comes to Adam.

I know, for instance, that trying to persuade him to watch one of Caleb's movies with him is not worth doing. He won't watch anything but Cars and that's that. Or, in the words of a British saying, there we are. That's a great phrase that roughly combines "there you have it" with "that's the way the cookie crumbles" and "who cares anyway?" thrown in for good measure. It's the perfect phrase for Adam...you know that lovely chocolate cake you made for Adam's birthday? Well, he's not going to eat it, so there we are. Or, hey, there's a great game of rounders in the park, does Adam want to play? No, he doesn't, and there we are. Or maybe, is Adam wearing his glasses these days? No, he's not. There we are.

Where we are is this little piece of no man's land where I frequently have to decide what Adam is going to do, what he's going to have to do, and what I'm willing to do for the sake of what he needs. It's the place where I long for the ability to reason with him, to explain that if he just looks at the duck once we don't have to come back. Where if he doesn't look, I then have to decide if he gets anaesthetised so that the doctors can have their look. What happens if we do that? What happens if we don't? Do they really need to look? Should I just lie back and quit fighting every doctor who needs a look at Adam? Because if that's the case then I also need to know if we should be paying rent to the hospital, since we'll be there that much.

Sigh. Where did I put that manual for raising Adam again? I'm always losing that thing...

Anyway, there we are. Another day, another dilemma. It's good to be alive.