Thursday, 5 November 2015

The inevitable blog post about Stevie Payne

I tried to stop myself. I tried, really I did.

I tried not to say anything about Michelle and Stevie Payne, but I just can't help it!

On Tuesday Jacinta's future got a little bit better.

I was out at my church, doing some study. Being Melbourne Cup Day (because nowadays in Melbourne most of our Public Holidays are for sports...) there was some (soft) bubbly and some chicken and salad and many a fascinator, and the cup was on the screen in the auditorium.

I didn't think much of it. I had a couple of horses in the sweep (a far cry from days gone by, when I'd study every race and put money on the horse with the best name in each - just on that one day) so I watched it, and it was about the closest race I've ever seen. So exciting, it seemed like it was anyone's until the last 20 metres.

And then when the race was won, I heard the commentators talking about someone being the first female - I was pretty sure they didn't mean the horse. It became clear fairly quickly that this was the first female jockey to win the race, which dates back to the 1860s. Her name is Michelle Payne, and her racing pedigree is pretty long.  She is one of 10 racing children of racing parents and the family has been in racing a long time.

So I was very happy to see that a woman had broken the glass ceiling of racing, a sport which is not loved by all, certainly not loved at all by some, but which has been quite soundly defended by a friend of mine who has worked around horses for many years, not in racing, so I'm not accepting comments either way on the rightness or wrongness of racing itself. I think I had a small tear of joy for her, and for my daughters.

Then as I watched, I saw that the person leading the horse around post-race clearly had Trisomy 21. I wasn't able to keep watching since I had children, namely one just-walking, lightning-quick 2 year-old to chase. Still, it became clear that this was the horse's strapper (basically a horse's PA for racing purposes), and for those of us who remember the movie Phar Lap (and have shuddered slightly on walking past his taxidermied body in the museum), we know that Tommy Woodcock was the no.1 person in that horse's life.

The strapper is so important a person in a racing victory that there is a trophy awarded, named for Tommy Woodcock, after each Melbourne Cup. This year, the winner of that trophy, was Stevie Payne, a 32 year-old man who has been working in the Ballarat stables for the last 10 years, and doing a darn good job by all accounts. He happens to be Michelle's brother.

I'm not sure at all how many of the people watching noticed him, or the diagnosis shining out through his facial features. I know that no-one was really watching the speeches at all, so no-one in that auditorium except Jacinta and me heard what he said in accepting his award. As I watched him, and after he had spoken, I was so overwhelmed by how life had changed in that 3-minute race.

If you were going for a Trisomy 21 Respect and Understanding awareness stunt, you couldn't have done it better. The whole country (with a few exceptions) watches that race. It is known as 'the race which stops a nation'. The whole country saw his horse win. Those of us in the country who watch the speeches saw a guy with Trisomy 21 get up and accept the trophy named after that legend, in exactly the same way the other guys accept it, for doing exactly the same job the other guys before him have done. No different.

His sister got up, was very gracious, thanked the right people and told the wrong people to 'get stuffed' (because it's not an easy ride when people are lobbying to get you replaced with a male rider and won't let you do your blinkin' job) and he got up, thanked the guys in the stables and everyone who came out to the race, hoped everyone has a great night and thanks very much.

In that moment, no-one could deny that here was a guy who had shown up, done his job, and walked away with one of the top awards for anyone in his mainstream profession. (This is one of the richest horse races in the world.)

And why did this make life a little better for Jacinta?

Because in 2017 she might start preschool. In 2019 she will probably start school. The big-kids-to-be at her school were probably watching that race, and kids like them saw a guy like Jacinta get one of the trophies. One day when she starts school and the other kids see her, if they know of no-one else with T21, they'll associate her with winning. If someone tries to negate her abilities or think less of her, the ones who've seen the Cup will have this memory in the back of their minds, telling them that what they say is not true. Couple that with the girl winning a boy's sport, and this one little race did an awful lot for my young lady with T21's future.

So for that, I say "Thankyou, Michelle and Stevie Payne, for showing up to work on Tuesday and doing your job. This Mumma will be forever grateful."

We're getting there, one step at a time. (And I've finally stopped bursting into tears at the thought!)

Tuesday, 27 October 2015

It's time we had a little talk....

Dear Parents,
October is Down Syndrome Awareness month.

It is also:

 I'm also going to assume that you're aware about the people with Trisomy 21 who read, drive cars, have valid opinions, work regular jobs, get married, have children, graduate from university, generally carry on with life without any ado. Also, of course, I assume you're aware of the growing number of child and adult models and actors generally impressing people out there. 

I'm also assuming you to be aware of my opinion on the striped socks thing. 

What I am not going to assume, however, is that you are aware of the "oxygen mask" phenomenon.
This is the phenomenon well known to airline staff, the one where parents are so intent on getting their children's oxygen masks on that they don't get the oxygen they need, and everyone suffers, the child included. It's so important that they tell us every time we fly, and we listen and we say to ourselves, "of course, that makes perfect sense". And then we give birth to a child with health issues and do the exact opposite. 

When your child is born with health issues, you immediately consult your practitioner, and usually very specialised ones, to find out what needs to be done to prevent permanent damage to your child's health, such as brain damage, hearing loss or dying, for example. You don't think twice about it. Your needs are pushed aside. You're the big one, the fully grown one with functioning bone marrow and a fully formed heart and lungs. 

This is how it always goes, because we'd do it for any of our children in a time of crisis. The crisis is dealt with and you go back to a more relaxed pace (not that I'm insinuating that anyone's actually relaxing here) but it's just a bit back from frenetic racing around or intense standing still, constantly on your guard.

The last three years have been, in my house, a bit ridiculous. It started with the sudden turn in my husband's health when I was about 6 months pregnant with Jacinta (and being pregnant with two other children demanding your attention isn't fun and games to begin with), through her initial hospitalisation, through the 'let's keep the weight graph trending upwards' (breastfeed, express, tube feed, repeat, every three hours - with a 4-hour window at night) before her heart surgery, through the IAHP training and the attempts to get the household in the one place at the one time to get co-ordinated to start a program, through the constant vigilance while the bleeds and bruises and tiredness were showing her illness despite the Dr's reticence to put her through a blood test (ha ha, in hindsight), through the diagnosis and sudden admission and weeks on end in the hospital, the family separated more than ever before, having to sneak out for a couple of hours to be there for my middlest's first day of kinder, having to see my two older girls and husband off at the airport so they could represent us all at his brother's wedding in England, staying home for 9 months to avoid catching anything at a gathering or at the shops, through being told on the day we were released from our last leukaemia-related admission that she needed surgery before the end of the year, through the waiting and waiting, and getting pushed back and putting everything on the calendar in very light pencil because you just can't commit, through the winter admissions while she was struggling to breathe with a bit of croup, through the second heart surgery with its twists, turns and sleepless nights like never before. 

This all finished about 3 months ago, and I kind of feel like I'm still there, in all of it at once. 

The thing is, about a year ago I had a cold. Not that badly. I think I had one day which knocked me flat, but after that it was just a normal cold. That illness sapped my energy right out. It gave me dry eye also. I went to the Dr about the eyes and the tiredness a few months later and she wrote up the eye drops and said I was probably tired because I was still breastfeeding. I hadn't considered this, so I considered it. 

When you haven't got time to think, and keep forgetting to make your children's appointments, you have Buckley's chance (none) of getting any appointments booked for yourself. Having mental fog and tiredness doesn't help either. 

I got to a point of being sick of it and deciding to look for someone who could get to the bottom of it so I can sort it out. A friend recommended a Dr in New Zealand. I booked in for a phone call. There was a 2 month wait. I waited. We chatted and she suggested I see another Dr about an hour from me for bloods and then contact her again if I still wanted to see her. I booked in with that Dr. Another 2 month wait. I went along and she had some very interesting suggestions re my health issues and sent me for bloods. On my return a few weeks later I found that she was spot on, my zinc and B6 were super low, my iron wasn't brilliant, nor was my magnesium. I had also requested to be tested for a gene mutation called MTHFR and the bloods confirmed that I had it from both my parents, meaning that my ability to methylate folate (which bodies do) was impaired by 70% (and that's as badly as it can be). Bloods also showed that my adrenalin was basically nonexistent. (For this to show up on bloods means that your adrenal glands are in serious trouble.) 

I'm in the process now of supplementing to sort out these, which is tricky apparently, when you try to supplement zinc with poor adrenal function. There are good days and bad days....

Still, my situation is fairly ordinary. Another friend of mine was diagnosed recently with breast cancer - a really aggressive lump that blew up in size in the two weeks from seeing a Dr to getting it out. Thankfully it seems to be all out, but it's a scary situation. This is a Mum who's had a ridiculous amount to deal with, none of it medical, up late finishing documents for lawyers etc. 

There are several others I know of also who have had to rest their adrenals so they can begin to function again. These parents are just exhausted, maybe just from worry that they're not doing enough, maybe from staying up too late blogging or chatting with other parents on facebook, maybe from tension at home or trying to be the perfect mother to their other children, one who can do it all - because they always used to...

I know you are aware that your child is as unique, in all ways, as all children are. There is no one defining characteristic for all people with Trisomy 21, except that they have a trisomy on the 21st chromosome - and I don't know anyone carrying a copy of their genetic tests around to show people. 

I know you are aware that the possibilities for your child are endless, and the only definite thing limiting them is the same as for anyone else, the idea from their mind or someone around them that they are limited. 

Please also be aware that you have to apply your oxygen mask first. I'm not going to insult you by suggesting you need to go for a facial or some other 'me' time while your child sits there at home having not met his potential yet. I am suggesting though that you go and get a checkup. I am suggesting that you take care of your diet and draw a line in the sand at 11 - or even 10pm and go to bed. I am suggesting that you confront any issues you may be having with your partner, your friends, your life in general, and sort them out sooner rather than later. I am suggesting that you (perhaps bit by bit) regain control of your life and be the one in the driver's seat in whatever increasingly bigger way you can. 

If you've dropped the ball on your own basic wellbeing, now is the time to do something to sort it out. Not tomorrow, now. I give you permission. Don't be the guy who misses the signs and winds up so unwell your child can't have you around to take care of them. Be the healthy one, who goes on and on because they have a check now and then and make healthy life choices. 

Now, I'm off to look up Dysautonomia....


Sunday, 11 October 2015

Heart Surgery - Take #2

We didn't get cancelled.

In we all went, after the obligatory pre-op 5.30am shower and into clean clothes.
Reported in at 7am and went straight through to see the Anaesthetist. He spent a few minutes double-checking re her ongoing virus and declared that she would, indeed be ok for surgery.

Through we went, got a photo in her cute little surgical gown this time, after thorough antiseptic wiping of her skin. I got to go in with her this time so I gowned up too. It seems that once you've got into a habit of accompanying your child into the theatre for anaesthetising, it's something they're inclined to continue. They even let her take a toy in. Anything to keep the blood pressure down, I think!

And off we went, let the big girls have McDonalds for breakfast because it was there and we were all fasting! Our lovely brother and sister in law live nearby and kindly got up early to invite us over for tea and toast, so we happily hung out there for a bit. We had also been dangling the Aquarium carrot over the heads of the older two so that was on the list and also we found that there was a room at Ronald McDonald house, which we needed to claim by about midday.

So we dropped off our stuff, drove in to the aquarium, couldn't park very easily and it had got to 2pm already. I was getting toey since the anaesthetist had said the surgery would be at least 4 hours, rather than up to 7 or 8. We were at 6 hours at this point and I'd already accidentally missed one call from a private number which thankfully hadn't been the hospital.  I decided to drop my husband off with the big daughters and drive on back. That way I could express some breast milk to keep my supply up. I figured they'd put it down the nasogastric tube while in intensive care as well.

So with that done and dusted, about 3pm, I decided I really could not ignore the call of the Gianduja chocolate they sell at the Chocolate Box (who aren't paying me any money) any longer. It's my biggest chocolate weakness, and that's saying something. They sell it at the Women's, which is down the road from the Children's. So Izz was off for a walk. I'd stopped worrying that checking my phone every thirty seconds was abnormal so I had it in my hand the whole journey.

By the time I got up there, attained my quarry and was heading back it was 3.55 and I got the call. The surgeon was very brief.  It was a long surgery. The repair had to be done twice. The heart was now good. It wasn't perfect, but it was good. The recovery might be a little slower since it was long but it was all good. She'd be in intensive care in an hour or so.

I should have remembered that the last time he operated he told me that she'd be in intensive care in an hour or so. It was three hours that time until I saw her. Still, I killed an hour waiting in the right place this time and the rest of the family arrived. After a bit more than an hour I went up to intensive care and checked. No show. The lady on the desk said we'd probably see her go past, so we waited in a slightly different spot so both access doors from theatre were covered.

We saw a small infant's crib and I thought that was too small for Jacinta, but I gave it 10 minutes or so and checked. Nope. We went back and waited some more.  Then I went to the family lounge for a minute, during which time my eldest let herself into intensive care thinking I'd gone that way. She found out that Jacinta still hadn't come in. By this time it was well after 5.30. Finally at about 5.45 I saw a cot wheeled through and I figured that must be her.

I gave it 10 minutes and went up to confirm that it was her. The ward clerk said it was but said it'd be a while til she was ready for visitors. She said about 30 minutes and that she'd come and get us. We decided the girls were well and truly ready for bed so my husband took them back to our room at Ronald McDonald house. I waited some more. Finally, about 7.30 she was ready. (That's 3.5 hours after I got the phone takes as long as it takes!)

She looked ok, considering.

Now this is the point in the narrative where I confess that I completely dropped the blogging ball.
I was writing this at Ronald McDonald house, I think. We were all staying there while she was in Intensive Care and then I moved out once she made it to the ward. I came down with a pretty nasty cold on about day 3 which took me about a week to recover from. She was sedated for about 5 days.

The trouble was that her lungs collapsed. Maybe it was one, or both, I don't remember. They checked the lovely suction bits and found haemophilus bacteria. They didn't mention which type. She was started on antibiotics and by day 5 they were able to take out the ventilation tube. The tricky thing with the sedation is that the morphine may have helped with the pain but had absolutely no sedative effect whatsoever. They had to sedate her with another drug, midazolam.

Now this is the kind of thing about which I am really ambivalent. I am really, really against the use of psychotropics on any member of my family. You would have to force me physically to agree, and I might still not agree. Except when we're dealing with the heart surgery, it's fairly life or death in a lot of places. When she was in the surgery I'm pretty sure (from a couple of comments made) that she had to be jumpstarted once or twice, and I have the feeling that once again they were not going for perfect in the end because they were just going for a living, breathing patient at the end of the operation. In intensive care there are a dozen syringe drivers going, with different meds at different doses and they have a routine, a system for how things happen and when. It pretty much runs like clockwork. Even the tricky ones have a system and a usual practice for handling the tricky bit.

In this kind of situation, you're looking at an error being potentially lethal. A wrong dose of one of these meds can cause brain damage etc. My working policy is 'Just don't mess with the cardiac unit, let them get on with it.' So I came in to find her on the hypnotic, midazolam, which is in fairly common use thesedays in dentistry, day procedures etc. to help the patient relax and to induce amnesia regarding the whole procedure.  Some people might prefer to forget, but the trouble with that is that when you want to use Dianetics to uncover past moments of pain and unconsciousness which might be negatively affecting your health or mental state, these obscured ones can be awfully tricky to locate.

So we spent a lot of very silent time in that room, for several days. Still holding her hand and stroking her gently when she needed us. She was in PICU for 4-5 days. One of her lungs had collapsed so she couldn't get off the ventilator very easily. It turned out she had a haemophilus infection in the lungs, which hadn't been causing an issue up to this point. (And since vaccination was never mentioned I have to assume it wasn't the HiB strain.)

So from Fri to Tues she stayed in PICU, doped to the eyeballs. We stayed in Ronald McDonald house and went to and fro. I came down with a super nasty cold, which I spent about 18 hours in bed fixing as best I could before she was sent to the ward. (Lots and lots of handwashing for the next few days.) On about day 5 they decided she was doing well enough to come off the ventilator (extubating, they call it) and they did this pretty fast. They disconnected the sedatives then whipped it out and got the nasal prongs on and crossed fingers that they would stay on. All went well and she got out for cuddles.

The recovery was slow. The main trouble was that she was doing fine, but they had to wean her off the morphine. The morphine was not sedating her though. It turns out that it's not uncommon for T21 patients to get hyper with morphine, rather than sleepy. So we had many nights of a morphine dose at bedtime and very little sleep whatsoever. The body can really react badly to going cold turkey so they had to keep giving it, even though she tolerated it so badly.

Mostly the admission was a lot of very little sleep. At least one night I gave up at 4am, turned on the movie channel and let her sit up watching TV while I attempted to sleep.

Then on about day 7 on the ward they decided that the ends of her wound were looking a bit wet and yucky so they took her back in for a debridement. I told the anaesthetists that she was not tolerating the morphine, so they went with fentanyl, which was 5x worse! After the fentanyl, and possibly because she was so angry at going back in again, she refused to talk to me. This is the first time ever that she has not been on speaking terms with me. It was scary!! I wasn't allowed to go near her.

Thankfully she was more herself after a sleep. After a day or so they let us wander the hospital a little.

That's orange juice - not coke!
They kept us in for a few more days on antibiotics for the yucky looking wound and finally sent us home at the end of the week - about day 15 all up. Meanwhile two friends of ours had also appeared on the list, been done, made it onto the ward and one had been discharged in about 5 days all up! (No fair!) The other also made it out within about 5 days or so,  just after us.

The physio at the hospital went from helping her with her chest recovery post-op to talking about her walking and even (though I told her it was not the plan and would not be necessary) phoned our early intervention and requested the physio come out to the house to see Jacinta (who was pretty much back to where she was before surgery already).  Thankfully the EI case manager was happy to stick to the original plan, especially since the last time the physio came it did not end well.

Walking, aaaand..... pigtails!! 

And so she's fully walking now. We're in a place where we're still on a 'just in case' dose of diuretic but sometimes I forget and I don't notice a difference so I'll be surprised if he keeps it up after our next cardiac visit. This place also enables us to think about the possible causes for the speech regression. We're getting an audiology check because the antibiotics may have caused some damage.

It's a little strange to be done. Ever since about September 2013 I've been on the lookout for physical symptoms and not making plans. Now there is no reason not to put things in pen on the calendar, and the calendar is fast filling up!!

Thursday, 23 July 2015

Surgery Lotto!

So I can't remember how much I've told you about the heart surgery that we've had pending for some time - in fact I think it just ticked over a year a couple of days ago.

I could check back, but frankly I can't be bothered, so I'm going to assume I last filled you in about when her platelets were low for a minute then righted themselves.

We were just hanging around waiting, waiting, not planning anything. First you'll remember it was meant to be before the end of the year - last year. Then it was decided by the surgeon to wait 6 months after chemo until the blood counts had recovered. This meant more like Jan but we had to wait until the surgeon came back from holidays so that would be more like the end of Feb.

Then of course the end of Feb and March came and went and we were told that because intensive care had been so full, and they need a spare intensive care bed before they can operate, the list had not been moving. Then they did a scan and found the aorta was thickening a bit which can narrow the passageway. This bumped us up the list a little.

About the end of April we got a call to come in for a day of 'pre-admission'. This is where they do the official bloods, scans, information, consent etc so it's all ready to go. These tests etc are valid for 4-6 weeks. We were then on alert, expecting the surgery to happen within about 4 weeks...and, nothing.

I had pretty much given up expecting a call when I got a call to say that Jacinta had made it to the top of the list. It felt like when you're waiting on the phone and you hear "your call has progressed in the queue", or even on those modern ones that tell you, "you are second in the queue" etc. The lady in the office who rules the surgery lists was checking our availability for the following week and the week after. Things were getting exciting. This was about the middle of June.

So I was checking in with her every couple of days. Then Jacinta had a runny nose which went away again, and they can't be sick with a cold if they're having bypass surgery. I was to ring back on the Monday to work out a day for that week. Instead I rang back on Monday to say that she had the biggest green snotty nose I'd seen in some time, and she wasn't up for surgery.  Later that week we had a follow-up with the cardiologist and they said we'd need to wait 2-3 weeks.

By this time I was kind of going a little spare, since life had been on hold for the better part of a year. We'd been trying to book life in and we couldn't pin ourselves down to a date. So once again we resigned ourselves to waiting.

The next exciting thing after she nearly got better again and then worsened was that the weather turned really cold and she got croup. Now throughout the cold virus she'd been working harder than usual with her breathing. We've had croup before and managed, but croup on top of heart failure (which we remember is not when your heart stops, but when it is failing to some degree) is a tricky business.

Here she was, nearly better, I was about to ring back the Lady of the List and report that we were better, and instead she suddenly worsened to the point that I rushed her into hospital for help with breathing. She was coughing and spluttering and just couldn't get a good breath in. We stayed overnight and with the help of a dose of diuretics got better enough to go home again, with instructions to watch and come in again if she worsened.

While in there they had taken swabs of the mucous (lovely!) and tested it for usual viruses. All were negative. Having ruled out such viruses as RSV (which is a nasty cold that can turn into bronchiolitis in already sick children), the surgeon started talking about operating regardless of the cold she has, since she might not avoid sickness and wind up in ICU from the sickness. So they sent us home to await a call.

I thought she would get better now, since she'd been sick now three weeks, which is quite long enough for a cold. Still, she kept on with the runny nose and the noisy coughing. Once again, the following week we had to report in again, with a croupy cough combined with increased work of breathing (which is fancy talk for puffing and panting).

I had called the List Lady before I took her in to ask her advice and she made noises suggesting that if we were on the ward long enough we might make it onto the inpatient surgery list. Apparently there was no room on the list for this week so it would be at least next week or the week after before there was a spot. Happily for our immediate sanity, but sadly for the cause of getting the surgery done, they agreed with my suspicion that the heart needed support until the surgery and sent us home on a dose of diuretics.  Surgery hopes once again dashed!

So that was yesterday that we arrived home, and I decided to call up today to see what the lie of the land was for the next couple of weeks. The List Lady said that she'd see what the cardiologist thought about proceeding while she was unwell and she'd call me back today or tomorrow. She called me back within a couple of hours to check exactly what kind of cough Jacinta has, because there's a spot on the list for tomorrow and if the anaesthetist is happy to go ahead, she can have the surgery.

So all of a sudden we're all systems go! Straight to bed to get up again for a middle of the night feed, then fasting completely from 6am. Arrive at hospital at 7am and if they're all happy, surgery at 8am is my assumption. This afternoon has been a whirlwind of organising. We're keeping the family together tomorrow. After all these hospital admissions we've had over the last year it's cruel torture to expect any member of the family to be on their own while Jacinta's in surgery, especially since it's very much a known quantity and when you're 7, you have a definite opinion on what kind of support you think your sister needs.

The surgery will take longer than the last operation was originally supposed to take. Going over the scar tissue is a very delicate business so they take their time. Also finding veins is much harder the more you do it, so that can take a while. So they've told us to get out of the hospital. It'll basically be a work day that we have to kill, so we'll see how much fun we can get up to!

And as for feeling like I've got a million things to organise and we're forgetting stuff, and trying not to feel terrible about the operation etc. well, it's there of course. I'm making a conscious decision to chill. I'm going to bed, I'll wake myself up for a bit, go back to bed, try to get a decent amount of sleep, and carry on tomorrow. Let's see how we go! (And fingers X we don't get cancelled....)

Monday, 13 April 2015

Low platelets!

So we're trucking along, Miss J's had a coldy type thing for a while, but she has had low lymphocytes so we know she's not likely to fight illness as well as she has in the past.

We had a follow-up with the cardiologist last week and he told us that her last bloods had shown slightly low platelets.  He also told us that the surgery list has been insane (which we knew) this year and that he didn't know when her surgery would be. Her heart is unchanged though, apart from some slight narrowing of the aorta.

The last couple of visits to the oncologist have been mid-morning which has meant that the bloods we have had taken downstairs before we see her have always been running late and she tells us the previous results and says she'll let us know if anything's amiss with today's.

Today when the nurse took the bloods she was in a rush and she didn't spend 60 seconds holding on or asking me to hold it while she did paperwork, she just put a swab and a bandaid on it and sent us off. It didn't take Jacinta long to chew the bandaid off, which resulted in a comedy of errors as I attempted to stem the flow of steadily dripping blood drops while getting a new bandaid open and keeping it away from her attempts to grab it and pull it off, because she didn't want it on!

We bled all over ourselves and the table at the coffee shop, but that's what baby wipes are for, isn't it.
 I mentioned this to the oncologist on our arrival and she looked at me askance and asked a few more pertinent questions. She mentioned that last time's bloods had platelets at 90 and that this could have just been because she was sick at the time, but that if this time's were lower again that they'd have to do a bone marrow aspirate to rule anything out.

She did of course insist that it would be so incredibly unlikely that she could have relapsed since "Downs kids" are exquisitely sensitive to treatment. (She always says that. I haven't really fully cleared up what she means, but I know it means that the cure rate is pretty much nearly 100%)

Still, she asked if we'd like to hang around for the results. I said we certainly would, and we went downstairs to the Parents' Resource and Respite Centre to eat, move all the toys somewhere else and have my phone cease working.

While down there I had a think about the possible revised plan for if Jacinta had relapsed. It really doesn't get much to get the cogs ticking over so you're making plans for how the day, the week, the month and the year will all get organised if the result comes back one way instead of the other. I pretty much had it sussed which day the bone marrow aspirate would be, how we'd organise the children, what food I'd leave in the freezer etc. All except how we'd break it to the children.

We went upstairs again, 45 minutes later. We ran into two other post-treatment patients. It was lovely to have a chat and to be able to tell someone who gets it that we were waiting on results to see if we'd need another BMA.

Between patients the Oncologist came out and said the results are perfect.

Big. Sigh. Of Relief.

As a side issue, it came to my attention that when they do open heart surgery it is common practice to remove some or all of the thymus gland, the one responsible for lymphocytes. The thymus builds the immune system. It's big when you're little and it shrinks right down by the time you're fully grown. I had no idea if Jacinta's thymus was in or out. No-one mentioned it. When I saw the Cardiologist the other week I got him to check and it turns out Jacinta's was partially removed. Thank goodness she still has some to work with! He says it's not common practice to remove it completely thesedays. Nice to know!

So we're working on getting her better so we can start doing the IAHP stuff now that Daddy's done the course.....but that's another post.

Saturday, 14 March 2015

March Forth!

So March is here.
March is the month with one big day in it.
21/3, which in American is 3/21. This is code for Trisomy 21, which is why the ancients who devised the Gregorian Calendar (Pope Gregory XIII) put a 21st of March in the calendar, simply so we could have a day devoted to Trisomy 21.
We'll be away on holiday on the 21st of Trisomy so I thought I'd blog now.

And I have to say, I'm torn. I'm horribly torn as to whether or not these days are a good thing.
The trouble with these days for things is that they highlight things as being something we need to be aware of, because people don't understand them, or because they need to be fixed. There's a brokenness associated with things that have a day devoted to them.

There seem to be several ways that people approach these days.
There is the 'look at my child whom I love, see why I love him', post.
There is the 'look at my child who deserves 'just as much' (insert noun here) as any other', post.
There is the 'look at my child who has feelings and dreams etc just like any other person', post.
There is the 'look at my child who I want to be accepted and included', post
It's rare to see any kind of 'look at my child, who deserves respect and understanding, as you do, who has the potential to do what you do if given the help from the start, who will only be held back by your judgements and suppressions and not by his/her inabilities', post.

What I see so far, (and it's understandable I guess considering that mainstream medicine in general, and tabloid media also, are on the warpath and would like to see people with Trisomy 21 done away with before they see the light of day), is a lot of people still on the back foot.

Maybe I'm lucky. I've never had some random stranger at the shops sneer at me or call me selfish for not aborting my child. I've never been told off by a Dr for declining genetic testing. I've never had people say mean things about Jacinta or seen kids exclude her. (Her sisters' friends actually fawn over her.) Maybe that day will come, but I'm working on that day never coming and if I have a say in it, that day will never come.

Many parents talk about inclusion rather than respect. They talk about acceptance rather than understanding. They say things like, 'just as much', which implies less rather than more.

Back in October 2013 (I think) I referenced a news article from the US where the Homecoming King and Queen from a high school both had Trisomy 21. This was not about acceptance or inclusion. These kids were the most popular in the year and they had the respect of their peers. This was no charity case. They earned it. It's not unusual for people with Trisomy 21 to be very popular amongst their neurotypical peers.

Most late teens/young adults I've seen with Trisomy 21 are heading into the work force or going on to university.

It is understanding which enables them to show they are worthy of being given the job and they generally command respect when people see them doing their job or going about their daily lives.

This is the very reason why I just don't use the term Down syndrome anymore. As far as I'm concerned that term has passed its use by date. The list is useful in diagnosis. If doctors know the list, they might see a few things from the list and suspect a Trisomy 21 case. Once they've tested and found a positive, the list can go out the window - except in terms of being a useful predictor of things for parents to watch for in terms of early intervention. (And as a side note, in re-checking the list I'm pleased to see that many websites have been updated since Jacinta was born, and 'mental retardation' is not only absent but its much more pc equivalent, 'cognitive impairment', is not listed as 'in all cases' any more, but is listed as a mostly and mild to moderate. I'm expecting that to be updated again before Jacinta hits adulthood.)

There are so many ways to intervene now. There are your basic physio, speech and OT. There are neurodevelopment courses like IAHP (the original and, in my opinion, the best). There is targeted nutritional intervention (TNI) with things like Nutrivene D or MSB.  There is NAET. There is Osteopathy. There are so, so many other nutritional things. There is fabulously successful heart surgery. There is fabulously successful leukaemia treatment. There are many other things for the many other things that can crop up.

The work that John Langdon Down did with people with "The Mongolian type of idiocy" (which, to be clear, he didn't mean that Mongolians were idiots, just that he had classified the types of 'feeble-minded' people in his care into different ethnic classifications, based on their physical features, not their country of origin) was quite respectful and thorough. He made some interesting observations. I'll post the link below. 

His classification was a breakthrough and it would have been great, had it not then been used for the next hundred years as a tool for diagnosing and writing off children from birth (and now before birth) as hopeless cases. In his article, there is no talk of hopelessness. There is talk of the work he has done and what he has observed in helping these people develop as best he can. Had he had NAET, TNI or IAHP at his disposal, or even modern physio, speech or OT, I'm quite sure he would have jumped at these therapies to try them out and see what he could achieve.

Still, since we found that there is a chromosomal difference, which seems to have nothing to do with tuberculosis in the parents but I'm fascinated as to why that might have been his suspicion, we could see that there was something actually going on in there and people have started asking more questions. 

Now IAHP didn't start treating kids with T21 because of any genetic discovery, it was simply by chance that Raymundo Veras felt compelled to write a program for an insistent staff member whose child had T21 and who later brought that child in to show Dr Veras the results, prompting him to treat other kids with T21. It actually took him years to convince Glen Doman to come and look at the progress these kids were making, because the medical view was that these kids had deficient brains. That's just what everyone thought. Now they know that 'Veras kids' respond really well to the programs and they find that they're very clever. 

NAET wasn't particularly geared towards treating kids with T21 either, it was because one mother with a child with T21 took him along, trying everything she could think of, and they pushed the envelope. They contacted NAET central and had new vials made for things they wanted to try treating. Since then the NAET practitioner has been to the international symposium and done a presentation on NAET's usefulness in treating T21 symptoms. 

So far there is no way to treat the T21 itself, but there sure are a lot of ways to treat the symptoms. There are so many different ways it can make your head spin, since you can't possibly do them all and it's very easy to get special needs parent anxiety, that feeling where you might not do the best thing for your child, from overlooking or underestimating something or putting all your eggs in the wrong basket. We only have so many eggs each, it seems. There are only so many hours in a day. 

So when we're all out there, so many of us now looking at the myriad of things available and the results possible (not guaranteed, but possible), and expecting some kind of pretty normal existence for our children, why then are we advocating from the back foot?

There's a part of me that is all for the 21st of Trisomy being celebrated as such.
This part of me wants parents out there to show their kids off and be really cocky about it.
This part of me wants parents bragging the hell out of what their kids can do.
I want to see the really fabulous examples of adults out there with T21 plastered all over social media, because these are the guys who didn't have what we have today, and they still have made it this far.

We now have so many things that were nowhere near around 20 years ago. Our kids' potential is completely unknown. There's even a chance that with awesome nutrition, a fantabulous neurodevelopment program which includes reading, maths and intelligence on top of mobility and the rest, the right education and respectful environment in which to thrive, our kids with T21 will be all over our kids without T21. Who's to say?

So I don't do odd socks for T21 day, I think that gives the wrong idea. I know it's meant to look like the chromosome, but to me it signifies an inability to dress properly.

I don't know what my plans are for that day, but if I do anything, it'll be to do with high fives and awesomeness. It'll be celebrating the things people can do and what they may be able to achieve in time. I really think it's time we got on the front foot and got cocky, for our children's sake. If I can change the environment Jacinta will grow up in before she has to navigate it for herself, that's half the battle won right there.

So please, please, can we swap acceptance for understanding? Can we swap inclusion for respect? Can we set the bar higher and go for what we really want, rather than settling for what we humbly think we're entitled to ask for?  If my children deserve respect, they all do. If my children deserve understanding, they all do. The ones without T21 just as much as the one with.

These older girls love popcorn almost as much as Jacinta does...

Here is the link to John Langdon Down's article.
Be warned: It's called "Observations on an Ethnical Classification of Idiots". It was 1866.

Monday, 2 March 2015


Here is a blog post for all those parents out there who just aren't getting it done today.

I'm known for my positive outlook (some might say I have blinkers on, or I refuse to admit things are as bad as they are, but I just choose not to look at the car crash if I can't be of assistance and to focus on the bright side).

Still, there are times when a positive outlook takes a beating and these are most likely to be the days when sleep is lacking, washing is mounting, you're well and truly outnumbered by inactive members of the household and chocolate is plentiful, and on sale.

So I'm sitting here, when I should be in bed, having just finished my 'grown up work' (bookkeeping) for the evening. Can't possibly go straight to bed because that is simply too depressing, to have a whole day with no downtime, and I refuse to entertain going to bed when my thoughts are still on work, of any kind.

So right now my inspiration levels are at an all-time low, and I thought it was worth mentioning that although I am still very much the person who has written all the previous blog entries and will be up and at 'em tomorrow, tonight I am off post. I'm mentally off the air.

I have recently come across the blog of a lady who lives in the same city as me. She has one more daughter than I do and they're a bit older. She has incurable cancer and she's an absolute hoot. She's inspirational. Today I do not feel in the least bit inspirational. I'm still positive, no change there, but I'm tired. Very tired. I had a follow-up doctor's appointment today re my toe which seems not to be broken from looking at the xray. It was to get the results of my xray. You can see why I forgot all about it and didn't turn up! Must ring and apologise tomorrow. Must remember to do so!

Anyway, I just thought it might help to hear, just this once, I'm not feeling particularly inspired today and I don't have any particularly inspirational words to say. Time for bed.

Tuesday, 20 January 2015

Well, hello!

I just blinked and three months went by!

That's the thing with having school-age children. You hit the end of October and things ramp up and, in our house, they don't settle down until about 20th January.....

And what has been happening?

We've seen the Oncology guys a few times, and they're happy. I'm in a place now where I don't see petechiae in every texta (felt tip pen) mark and I know the red in the nappy is a piece of undigested tomato - after a very thorough examination.... Getting there, slowly.
We've all been fairly healthy since the end of October.
I just found a post from December which I never finished, so I've published it with a quick glance-through. I hope it's not too sensational!

The eternal puzzle of what to get a 2 year-old who really wants a Barbie (sigh) for Christmas that will encourage her to move around in a cross-pattern on hands and knees is ever-present. She did get a Barbie. She also got a drawing mat, one of those water pen ones that are everywhere at the moment. A Peppa Pig one. Of course.

Then she had a birthday!! Books and dresses, I said. Books and dresses. She got quite a few books and dresses. She had a lovely time. And a Peppa cake. Of course. Funnily enough she hasn't watched Peppa for ages, not since hospital. I've pretty much banned DVDs and videos, on top of the nonexistence of TV. Caused too much trouble with the older siblings. Pointless for development anyway, though oh so handy to get things done...

I meant to post on her birthday but there was just too much to get on with and I was too behind on sleep! She's not the only child, nor the only one with a January birthday and this year is party year for my eldest. This means lots and lots of organising for lots and lots of children. (We don't do it every year so I place few limits on how exactly the party will take place. If it's possible, we do it.)

And so how is she looking? What is she doing? We had a few hot days at the start of the year so we were at the swimming pools and I noticed that it was very easy for her to grasp my fingers, Doman-style, while she was in the pool. This was so much fun for her that I took up doing it again at home. She'd become so tired and pretty weak that I'd given up last year some time. Anyway, she loves it. Every nappy change, unless she's too tired, I stand her up on the change mat and she says "arp", which is Jacinta for "grasp" and we give it a go, three times.

This is how the Doman program is meant to go. In the ideal world, the bulk of it is meant to slot into your life so you can do it as you go about your day. So easy. One purpose of this grasp exercise is to stretch out the thorax and get more air going in, which can impact on speech. Since then, her speech has been coming along. Now I'm not completely sure it's just that, since my middlest also had a marked change in speech at that age. She spontaneously began speaking in sentences on her 2nd birthday. Still, it's very interesting that old words are suddenly back. Dipdipdipdip, for a chip. Piddabada, for peanut butter. Butterbuy, for butterfly. Hey, for hey. She's having a go at new words too, like 'grasp'. There are others that slip my mind for now.

So how's she looking?
Like this!
That there in the background is the crawling track. I moved it since it was in the way of everything, but before I did I tried something out. She had just started climbing stairs since she realised that if she could climb stairs she would have almost unlimited access to slides and other playground delights.

I set up two stools, one under the crawling track to give it an incline, and the other just behind that stool, to create a smaller step. She cottoned on pretty quickly and when she crawled up, I very gently encouraged her knees to use the mat instead of doing the usual (cringeworthy for brain synapses) bottom-shuffle. I found that when I did this, she settled into a lovely cross-pattern crawl. Now I'd love to tell you that from that point on she enjoyed crawling so much that she gave up bottom-shuffling for good, but she didn't.

Still, after that we've seen her crawl several times when left to her own devices. Trouble is we get so excited that she stops, sits up, enjoys the applause, and forgets to do it anymore!
When my husband has finished his studies (4 weeks to go til exams!) we're going to get moving on this IAHP stuff, at least to get crawling happening.

Still, she's cruising, nearly standing on her own, wanting to walk but lacking confidence. She does still point her feet outwards a fair bit, and I suspect crawling will help with that.  She can climb up and down stairs safely now, which gives me some freedom and also gives her some freedom, which negates the freedom I get!

She's enjoying books for older children. She's tickling us and doing 'round and round the garden' with us. She's mastering the use of cutlery and is throwing her plates on the floor much less now. In fact the floor has not been covered with uneaten portions lately, which is lovely. I also found coconut yoghurt at the supermarket yesterday and she likes it!! (As opposed to any kind of non-dairy milk we've tried so far - almond, rice, macadamia...)

Another thing I found interesting at the pools was that she's not too keen on me putting her on her back in the water, but if I put her up at the side, holding on and with her feet up near her hands, like the start of a backstroke, she will actually push off like a backstroke swimmer and happily go back a distance if she's resting on me. I've never seen one of my children do that before. It's like she's a ready-made swimmer.

Anyway, there's a lot to go on with and lots to work on.

And it's a time for reminiscing, since one year ago today I was still reeling from the phone call that had come in the evening, telling me that the bloods we'd had earlier that day showed signs of leukaemia. The next day we went in and were in for a further 6 weeks.
What a strange turn of events. Nothing was ever the same, though it's always like that, isn't it?

As a child, then a teenager, I used to wish for things to go back to the way they were in the past. I was always striving to recreate perfect memories.
So many times since then, life has taken a sharp turn in another direction. How different things would be if people hadn't died, if people hadn't gotten sick or developed problems. But it's part of growing and developing into the person you will become in order to grow and develop some more. Particularly so for my older children, who really have been the collateral damage in this leukaemia business.

We're finally getting strict enough and consistent enough to regain some semblance of control over the family and the house. Things got so chaotic, it's been hard for the girls to know where the boundaries are, especially when they are being set by several different people and then being relaxed because everyone feels sorry for them and nobody wants to be the bad guy, or has the time or energy to deal with a meltdown. Still, I'm hopeful that by the end of this year we'll have a bit more clockwork going on in terms of knowing what the rules are and sticking to them. Fingers X!

Last week we farewelled a little boy we met on the ward during our second admission. His is a tragic story. He was the poster boy, the success of the transplant unit. A gorgeous 2 year-old who was tearing around the unit when he had the energy and riding his pole around if he didn't. They found a 100% bone marrow match for him. He had it all done and recovered so quickly. Within 60 days he was back again, with everything back, much more aggressive than before. Watching The Fault In Our Stars recently, it really tells the harsh reality for so many families. Relapse is lurking over your shoulder, in the back of your mind. It's there as a possibility and can happen when you least expect it.
Farewell to Ryder, rest well little buddy.

And the rest of us carry on...  
Trying out her new dissolving arms.....

Oops! Skipped a month!

NB: I actually wrote this on 2nd December 2014. Forgot to publish it!

Where did the time go?
We had Halloween, which is kind of lacklustre in Melbourne, but is gaining momentum as the chocolate companies realise there is still a virtually untapped market here and flog it to death.

We had Melbourne Cup Day, which I celebrated by running out on my family completely in the afternoon and missing the whole thing.

We had a trip to Echuca, via Benalla, which isn't exactly on the way.

We had November, which is a bit of a blur, with Christmas things already going on and an early Thanksgiving celebration a few weeks ago. We got to try sweet potato with marshmallows!

Well, when I left off Jacinta still had the last remnants of the gut issues from the gastro and I was exhausted. I'm still exhausted since everyone's given up sleeping, it seems, but the gastro's all gone now. It took a couple of weeks for her (TMI) poo to regain its colour and stop exploding out everywhere. I did also rein in her diet to ensure she was getting enough iron and all the other things she needed. (It got a bit off course there when we were in hospital all the time.)

Then, shortly after she was clear of the gastro she came down with a cold. I had it for a few days. She struggled with it on the first couple of days and I almost took her in to Emergency on day 2, since she was working so hard with her breathing. If she hadn't fallen asleep for the night and settled down I would have taken her.  I got her back to see Maria and we've been working on the illness. I think it settled down and she caught another one straight away though, because she's been unwell for several weeks now. It has stayed off her chest though, thankfully.

Today was an appointment day and she was all fine on the cold and flu things so we got to address her heart, yay! (plus a bit of muscle, brain-body function and trisomy 21)

This is following on from yesterday's appointment with the Cardiologist. She flew through all the scans (Echo and ECG are standard with each visit) without a fuss and the nurse, technicians and Dr were very pleased with her. I think when you've been having these tests since birth and they don't hurt at all, you've got absolutely no reason to make a fuss!

The Cardiologist says her heart is about the same size as it was this time last year, which is good. The danger is that if the valve stays leaky and goes untreated it might cause the heart to become enlarged - and I don't think it helps you to race better, like Phar Lap (google Melbourne Cup, Phar Lap) if you're a human with a large heart. I think it's just more likely to explode, like the guy from The Meaning of Life ( "it's just a teeny morsel, wafer thin..." ewwww)

Anyway, I think that the reason they want to fix it in particular is that over this year she's had a few moments of struggling when she's had transfusions or IV fluids or respiratory issues with bronchiolitis etc.  Still, we're working on the heart to see if we can get that AV valve working properly and avoid the surgery altogether. ("we're working on the heart to see if we can get that..." Flying High? Anyone?)

So today was interesting. I didn't see any heart or muscle-related improvements like I've done in previous times (like the time she was breastfeeding right before a treatment and then came out after and finished the feed and it was like someone had cleaned out the vacuum cleaner pipe - the suction had improved out of sight!), but I noticed that she was super chatty all day after the treatment and she was blowing raspberries and I realised I hadn't seen her do that for ages - possibly since before she had the line out.

I guess we'll see how we go on this one. It's great to be doing these things, and I can't wait to address things to do with crawling or speech. I know, there's time, but I want to do them all now!