Wednesday, 11 December 2013

So where are we now?

December! How did that happen?

Well, things are rocking along here. Jacinta's still doing just fine. Maria had a go at treating Broca's area and Wernicke's area (the areas in the brain named after these two fellows, which relate to speech input and output). Since we started that she's been chatting up a storm, which is ace. Not to say that she was short of topics before but hey, she's my daughter, what can I say?

And we're now at a bit of a crossroads. I am finally getting organised on the home front. The house is clean more often than it is messy, which is a first. The washing is normally up to date. The big girls' room has had a number done on it, loads of soft toys evicted and a minimalist look now in the decor which means it gets tidied every night and never more will we be searching for a clean patch of floor in there. (Well, until they get old enough to demand the right to clean it themselves and absolute privacy...)

I'm getting fitter because I've joined my friend's team for the Oxfam 100km walk for next May - I know, I'm a lunatic. My husband seems to be finally getting on top of his body issues and the seizures and migraines are few and far between. We seem to be climbing out of the general disarray we've been in for the last 18 months. This means that we've been able to do some of the IAHP program with Jacinta. It's been patchy and we're trying it on for size a bit, but it's happening. She's getting pretty strong and dying to take off but not quite moving forward yet. I'm keen to do the home program with IAHP but we have to take an overseas trip in April and Jacinta is still meant to be sleeping 4 hours a day plus we're trying to transition to solids - this doesn't leave much time to do 3 hours of therapy each morning!

So I've been entertaining the physio twice a month. She comes over and does some things to show Jacinta things that are steps between being on her tummy and crawling. It's a bit odd though, that they're doing all these things and not just encouraging commando crawling. It seems like pulling someone up by marionette strings to get them to walk rather than letting them work it out themselves. It seems to me that if you do some patterning to show them the basic crawling manoeuvre and give them a track to crawl on, making conditions as ideal as possible, commando crawling will happen. This will strengthen their core muscles and arms and shoulders and quads which are the crawling muscles. (When I say crawling I mean American creeping. Commando = American crawling)

Anyway, she comes and gets all excited about how well Jacinta's doing at developing very nicely on her own as though it somehow has to do with the physio. She plays the children one at a time as though they're her own patients and has them doing things as though they're circus animals, and doesn't stop her own agenda to watch the thing that they want to show her and grant that importance. Generally I find her attitude towards children quite rude. From Jacinta's responses I get the impression that she doesn't like her attitude either.

She was over a week ago and we were talking about what to do and where to go from here. The service I'm with is a government funded service and we have a certain amount of funds to use for early intervention. She and the social worker lady (who doesn't have much to do on our case but co-ordinate)  were asking what we wanted to do for therapy. It was as though I was having to say whether or not we keep going with physio. I have no idea what they normally do, so I asked them what they normally do. The physio told me that they normally have a goal in mind and they achieve that and then the physio steps back and the speech pathologist or occupational therapist comes in to do some.

We agreed on a goal of 'moving forwards', which Jacinta's nearly reached. The physio was talking about speech pathology being next and I mentioned in passing, since I'd been talking about doing IAHP next year with no special reactions, that we had been treating speech areas with NAET and we'd seen some good improvements. The social worker didn't have any info on NAET and asked what it is. I gave her a brief synopsis of how it works, how I found it and how I've found it useful on various members of the family.

What happened next was very interesting. The physio basically said, "You don't need to justify or explain it to me. These changes in speech are what you would expect from the work we've been doing physically and could just as likely be attributed to the physio." (Bear in mind that what the physio does once a fortnight is done once a fortnight and not in between.) "Whether I agree with it or not (and I don't agree with it) I just continue to do as I do and you can keep doing that. It's not hurting anyone. If it makes you feel like you're helping then you should just keep doing it. I have other families who spend thousands on supplements and it makes them feel like they're helping their child and I just let them do it and keep on doing what I'm doing."

I was slightly stunned. I was listening to all this wondering if she could hear what she was saying and if she realised that she was speaking her thoughts out loud. Confrontation is my least favourite thing, especially since I take time to process things which are stated arrogantly as though iron-clad truth when actually quite full of holes and when the speaker makes out that I'm stupid and we all know that. I don't remember anything else much from the meeting after that, but I decided once they'd gone that the physio has to go.

I've been in two minds about her anyway, since I don't really do what she shows me and I don't like the way she treats the children. (Which, to be fair, is not mean or harsh in any way, but it shows that she doesn't respect their intelligence.) I just can't have someone in the house who thinks that way about me. I can't sit there and even pretend to be listening to what she says when I know she's looking at me and thinking what she's thinking.

So I guess come Christmas it'll be time to get this program happening properly, every day. We're nearly set up to get it going. I've come to realise that I have to make myself a strict homebody, at least in the mornings. We're still not 100% on the diet but we're consistently better and they did say to get it in on a gradient. It's a small gradient, but it's happening. The home environment is better. Things are improving bit by bit.

The thing that people are noticing most at the moment is Jacinta's size. She presents like a much younger child. It's actually interesting that people love her and comment on how beautiful she is, then ask how old she is and are a little surprised that she's nearly 1 (!).  I usually attribute it to the heart condition which, to be fair, did inhibit her growth up until about 4-5 months. The other factor that people won't realise is that my eldest was also very petite as a small child. She was always getting comments that she was tiny because she was on the small side. I remember comparing my health centre book with hers to calm myself down after comparing her to the percentile charts. I must pull mine out for interest's sake. I think with all the factors in, it's not a concern.

There has only been one time in her whole life where Jacinta was openly picked as having Trisomy 21 out in public. Recently my husband and I were killing time out at a cafe and two ladies saw Jacinta and asked how old she was. Then one asked "how is she going, developmentally?". I should have triggered, because people don't just ask that, but I gave the usual, "Pretty good - she had some health issues at the start, but she's catching up...". Then the lady said, "there's our two over there". I looked at the table over the other side of us and there were two women in their late '20s. They looked over and said 'hi' and I saw the features of Trisomy 21 on their faces.

These women were well dressed, well spoken and very sociable. They came over as sociable women do with babies and said 'hello' to Jacinta. Their Mums said that they'd just had a swim meet, that they both swam competitively, that they both ski as well and that this year they'd been to several countries and had been many places in the world to compete in sports. The daughters told me about what they did for a living and the travel they'd been doing and were chatting about how difficult it was in Italy trying to stay off the gluten! (I can relate...)

They asked about what we were doing for her in terms of a program. I gave a basic outline and they were glad that we were going for it. The Mum we spoke to first said that the main thing she tells everyone she meets is that you just keep your expectations normal. You don't aim low. You can always adjust them but keep your aims high until you know otherwise. She had many practitioners tell her things were impossible and she would always ask them to prove it. Her daughter went to an exclusive girls' school from Prep to Year 10 with no aide. She kept up with her siblings and was expected to. She told us to keep aiming high. She also gave us her details in case we wanted to ask questions.

This was the most refreshing meeting I'd had in ages. These ladies were 27 years old. Imagine the possibilities for Jacinta!!!

Things are exciting, even though every day Jacinta looks less and less to me like there's anything amiss in her chromosomes and it's easy to get complacent.

Watch this space.
(I have so many photos to upload. I promise, next time!!)

Thursday, 31 October 2013

Down syndrome awareness links.

Well, as promised, with just minutes to go of the last day of October, here is the second of my blog posts dedicated to "Down syndrome" (Trisomy 21) awareness.

I went looking for a list of common features of Trisomy 21 and I couldn't find a complete list. Here's a rule of thumb which her head paediatrician from the NICU at the Women's told me. If you hear that something is common with Trisomy 21, it always occurs in typically developed bodies too.

A second fontanelle is something that pops up sometimes in babies with Trisomy 21, and also sometimes in babies without Trisomy 21. A heart defect pops up in about 50% of people with Trisomy 21 and it also pops up in many people without it. My Mum had one of the heart issues that Jacinta still has (PDA) and it wasn't diagnosed until she was 63. Her father also had a hole in the heart.

If you look at things that way, you'll see that having Trisomy 21 doesn't have to put anyone in a separate category for special treatment really. Depending on how well they can work with or around their limitations, individuals can carve out very meaningful lives. Plenty of medically typical people do a lot worse than your average person with Trisomy 21, despite having no excuse!

There are so many things popping up online that challenge the old-school thinking re Down syndrome, it's hard to remember them all. I've listed below a few that I remembered in particular and managed to track down again.

This first one is something I came across a couple of weeks ago. It's just a lovely article about these two being voted homecoming king and queen - and it was a point of respect, in particular, rather than condescension.

This one is a link to a preview of a DVD. I haven't watched it, but it's an interesting story which was captured on film. It covers the story of Monica and David who got married and then had to really work hard to convince their parents that they needed their independence.
- Monica and David

Karen Gaffney is a legend. She just busts through glass ceiling after glass ceiling. Awesome.
 - Karen Gaffney

Tim Harris must be one of the best bosses ever. A friend of mine saw this video and wants to open up a franchise store - so long as everyone can do the 'going to work' dance.
- Tim Harris

This is a great article about another person who has won the respect of the people around him and rewarded for that.

This guy is just plain fit. I did a double-take when I saw these pictures - a little bit like in Harry Potter 4 when Harry was in the bath and looking a little too grown up.... Yet another paradigm to conquer!
-Renan Codogno

This is cool. Basically a young lady not-quite-going-off at the world in general.
 - Don't Limit Me

Highlights for this week:
We saw the Paediatrician (who first gave us the diagnosis when Jacinta was about an hour old) yesterday. When she looked at Jacinta, she said, "you look so different!!". She was very impressed with how good she was looking.

We saw the Osteopath today who was very happy with the shape of Jacinta's head. She says it's looking much rounder, not flat like it did and like many children she sees with Trisomy 21.

Yay!! Go Jacinta, go go go! (That's one of the chants we sing when she's on her crawling track...)

I hope some of the links up there give you some idea of the crazy notions we have in our heads and what we see as the nonexistent glass ceilings for Jacinta to work within!

I'll post photos of that lovely head next post. Very soon!

Tuesday, 15 October 2013


So it's October - how did that happen??

And it seems that October is International Down Syndrome Awareness Month. How fascinating. There are only 12 months in a year and Down syndrome gets one of them. (Along with about a dozen other things to be aware of, but it sounds pretty impressive!)

So this is interesting. Largely, for me, it is interesting because Down syndrome is something which people actually need to become aware of. For many years ladies have been checking their boobs for lumps and gentlemen have been fronting up to the doctor and presenting their rears for digital examination. In contrast, Down syndrome has changed. The early intervention and therapies available are showing that all over the planet there are extraordinary people emerging like butterflies from a chrysalis.

So I'm quite pleased that planetary awareness is being pointed at Down syndrome - even though I don't use that term any more!! Does anyone know who is in charge of nominating awareness months worldwide? Is there a schedule up on some planetary tea-room wall with different months set aside for different purposes? Is the rightful owner of the month drawn out of a hat? When calendars are printing up the next edition, who do they ring to find out whose month is whose? If you know, feel free to leave a comment in the comments!

And so how do I want to spend my October most effectively? We all know that I set very little store by the Down syndrome paradigm or by the expectations still held by many in the field of allied health in terms of what can be achieved by a child and then an adult who has "Down syndrome".  I don't like to use that term actually, because it just doesn't really relate to Jacinta at all. When I look at her I see a child who is just as bright as my other two. Her mobility is slightly delayed but if you take into account that she didn't get to start working on that really until she was about 5 months old, I think she's entitled to special consideration.

Her language and manual dexterity are about average for her age. She's doing really well. There are a couple of tiny things in her facial expressions that my other two didn't do and her nose is still flatter than that of my other daughter who was also born with almond-shaped eyes. People certainly don't look at her and ask what's wrong. Either everyone in the world is really good at poker or they don't see anything amiss. There's nothing different about the vibe in conversation from my first interactions with my eldest and now. So I don't think that the Down syndrome descriptions are helpful in terms of things to expect and make people aware of. If it's a list of things to treat and look out for to resolve, then fine.

I think that awareness needs to lie in two areas. The first area is that of early intervention and expectations. It is becoming increasingly obvious that when you treat people like intelligent and able people they have the chance to reach for that standard but when you treat them as disabled simpletons they will only reach that far - unless they have a great deal of mettle and are able to disagree wholly on their own and make that difference on their own steam. This is happening, slowly.

Things such as "Michelle and David", a movie about a couple who get married and have to fight for their independent life; the court case where a young woman with Trisomy 21 is appointing other legal guardians because she doesn't want to go to the group home where her parents want her to be; Karen Gaffney being awarded an honorary PhD; Tim the restaurateur who serves breakfast, lunch and hugs; the man in Ireland (I think) who has earned an official figurehead title through his fundraising efforts, the young woman who made the video "Don't Limit Me"; and the list goes on, are all trailblazers who add weight to the idea that it is completely unknown what the limits are for someone who has Trisomy 21. In fact, when people with Trisomy 21 are getting married, having children, earning tertiary qualifications, starting businesses or holding down steady jobs, doesn't that make their limits as nonexistent as those of the person who lives next door who could also do any or none of these things?

The second area that I think needs to be addressed is that of respect. This is something that people with Trisomy 21 are striving for but in asking for it their advocates often fall short of the mark. I hear often about 'acceptance' and 'inclusion'.  If I arrived in a group and needed to make a life in that group, I could be accepted. If they were feeling kindly and not wanting to hurt my feelings then I'd be included. This puts me at the mercy of their kindness and I have no power of my own. If I do something that people think highly of, or I demonstrate that I can do something like that and will if necessary, I will have commanded their respect and be an equal player in life.

There is an 'R' word that people find offensive because it is used to label or derisively describe people who are less intelligent than the average. People with Trisomy 21 have been labelled with this word all too often by association, being by their facial features easily identified with other members of this group.  True, in the past when T21 kids were shut away and treated like idiots (literally) they lived short lives and functioned as idiots. Now that they are nurtured and encouraged to grow, we have no idea what this generation of kids with T21  are going to achieve.

I think that in the future the T21 kids will command a lot of respect since people will look at them and see what they have overcome to be doing what they're doing. I also look around and I see disabled people walking (or not walking) around. Since Jacinta's heart surgery I have a newfound respect for the disabled. When I look at someone in a body which has real problems, we're not talking a bad hair day here, and think about what it takes to get up in the morning and actually leave the house, I deeply respect them. When I think about the disrespectful things that are sometimes said to them or done to them, which they can't easily counter since they are less able to use the body that they are having to use,  I respect them even more for getting out of bed and leaving the house.

We all get up, shower, eat, get dressed and leave. No big deal. These guys haul themselves up, have a very complicated showering process, if they get their own breakfast using crutches or wheelchair bound  or shaking uncontrollably it's not straightforward, getting dressed with out the full use of two arms and legs is tedious and frustrating at times (ask a person with a broken limb or a pregnant lady) and leaving the house is not just a simple case of walking out the door. That's just leaving the house!!! Then they get on with their day, which must drive them half mad sometimes. There are able-bodied people out there who can't face the day when their day has nowhere near the level of difficulty or disrespect that these folk have to experience. My hat is off to the physically 'disabled'.

But I also think this runs deeper. When I think of it, I think of problems which abound worldwide and wonder what would happen if we brought back this old-fashioned concept of respect. There used to be a mantra, "respect your elders", which no-one much says any more. The older I get, the more truth I see in that statement. There is something to be gained by an observant person when he lives a long time in a full life.

The things that really bother me about society are that there is a fundamental lack of respect across the board. The tendency to criticise without having any notion of the reality of what or who is being criticised is prevalent in this society and I see it across Facebook in particular. Everyone's an expert it seems. The concepts of 'haters' or 'disrespecting' are quite new really. There was a time when manners prohibited this sort of behaviour. Then the post-war era happened and rebelliousness became fashionable. This brought a sort of coolness to treating others badly.

Once I had a Facebook friend. He was known through other friends and he was quite young, in his late teens. We got along quite well, until he started hanging out with some different people and his posts started to sound something like, "that awkward moment when you lean out of the car to throw a bottle at a (insert R word here) and he turns to look at you just as you've thrown it.........etc", and at that I unfriended him.
What on earth makes anyone think it's ok to a) do something like this and b) talk about it like it's even remotely funny? What on earth makes anyone think that they are in a position to treat anyone with such disdain? It's exactly the sort of person who would do this who is not in a position to treat anyone with disdain. This sort of person is to be pitied.

If we look around the world, we see religious intolerance. Different religions failing to respect other religions. Non-religious folk failing to respect people who do follow a religion. Religious folk failing to respect those who feel that until a religious philosophy is proven to them they cannot subscribe to any one.

Parents and teenagers fight. Imagine if parents showed their teenagers the respect they would show their favourite movie star if he/she showed up at the door. You'd never scream at and nag Sean Connery or Meryl Streep if they paid a visit. You'd be polite and if they were upset you'd go to great lengths to find out what was bothering them. Imagine if teenagers treated their parents like their favourite movie star. If Kristen Stewart or Robert Pattinson offered to help them tidy their room they'd be in there like a flash. They'd be queuing up to do things for these guys. They'd sweep the floor, take out the garbage, wash the clothes. They'd even do their homework if their idols offered to help them.

How would discipline of children play out if there was respect shown to them, as though we thought their day was actually hard work and they actually achieved something? I am willing to put my hand up and say that there are times when I fail to respect my children and fail to show them respect and my parenting reflects that - and their behaviour, in turn, reflects my parenting.  Sad, but true.

So yes, it seems to me that respect has been shelved for this day and age, but what if we took it out again, shook it off and tried it on for size? We'd all be a lot calmer, for one. Big bosses bawling out the whole staff at a meeting just wouldn't occur. Road rage, gone. Rude comments to strangers, off the agenda. Insults, mistreatment, physical/mental abuse.......the list goes on and is all gone. Manners - in. Courtesy - in. Consultation - in. Listening - in. Kindness - in.

So, it has taken me half of October to finish this post. I was going to suggest that we spend October showing respect to others - disabled, special needs or not, and see where it takes us. Seems we still have  a fortnight or so to give it a try - or we could just keep doing it longer. So my challenge is to look at whoever you see and instead of dismissing those you normally would, have a think and find a reason to respect that person. There will usually be one, at least.

If we all tried that, well, our T21 kids would be well looked after just by being people and we could all just carry on helping them to achieve their own individual goals and dreams.

My next October post will be pointing out a few people who have been living lives I'd be very happy to live, despite having the challenges that T21 throws at them.  Until then, live well!!

What you lookin at? 

Thursday, 19 September 2013


Well, this is meant to be the full story. It wouldn't be right to post all the good bits without the other bits.

I've posted about Jacinta's birth, her trials, her surgery, her triumphs.

I've posted about how my perspective has changed so much since she was born. This was largely because of the children I met in the RCH (Children's Hospital) and their parents.

When Jacinta was first in hospital after her surgery I was in the tea room, I think the second day. The Cardiac and Intensive Care area has a very chatty parents' lounge, so as I made my cup of tea I was chatting to the parents there. Given that 50% of Trisomy 21 patients have a heart condition it is not surprising that there were three patients (that we know of) in Intensive Care at the same time who had Trisomy 21.

This day I met the Mum of one of them. He was a little boy from a town about 2 hours away. Until about 3 weeks earlier he had been getting on with the business of growing up and his Mum was telling me that she was just starting to get onto the idea of supplements and had made an appointment, or was about to, with a naturopath to get the ball rolling. This had been interrupted by an illness that had turned into a really bad cough and had got him admitted via emergency and sent down to Melbourne.

We were talking about my story and my friend, Kristen. This Mum asked if I was on a particular facebook group, which I hadn't heard about.  She got me added that very night. I was keen to meet whoever else was in hospital and I made a date for Saturday morning to have a cuppa with anyone from the group who was around. It turned out that the Mum whose daughter was in the room across the hall from me was also from this group and when we met in the parents' lounge we were laughing because we'd been checking each other out, wondering if it was the other that we could see through the glass walls. (This began a long running joke of texting or facebook messaging each other rather than just going to the door and speaking to each other. )

It just happened to be my birthday that day and so the Mum from across the hall and the Mum and Dad from 2 hours away sat down to help us eat my star-shaped chocolate ripple birthday cake covered in icing, marshmallows, Smarties and snakes. (That right there is a recipe for diabetes.) It was delicious, if a bit sickening at the same time.  At this point we knew that Jacinta would be transferred to the ward sometime soon. We also knew that the girl across the hall was making good progress considering she'd only been there a day or so.

We didn't know much about the little boy from 2 hours away.

It was a day or two later, when greeting his Mum in passing in the hallway and expecting to exchange the usual pleasantries, ("How are you guys going?","We've turned the oxygen down, on high flow now"), that I saw the look on her normally beaming face, which told me there was something awfully wrong. When I asked if she was OK she told me that the doctors had worked out what they thought was wrong with her son. It was a very rare condition and he wasn't expected to live much longer.  This was the day they received the news that there was a very high likelihood that their little boy would not be going back home. It was the day their world really started to crumble for real.

Over the next few days I learned that on top of his heart problem, the lung condition that this little boy had was so rare that less that only 9 or so people in the world had it. They were trying all the things they could to treat it. If these didn't work then it was a battle to keep him alive until he was big enough for a heart/lung transplant. He would have to be 6 years old. This was the sort of situation that our hospital is the place to be in if you want it sorted. They were contacting hospitals overseas to find out everything they could to treat it and any new things that were being done anywhere they could find it.

By the time Jacinta was going home a week later they had tried almost all of the treatment options. He was still in intensive care. We went up to his room to say goodbye. His parents had met Jacinta once or twice by this time, since she'd been up and about for a day or two. I still hadn't met their little man and he was just being put to bed as we were leaving so I missed him, but we said farewell and wished each other luck going forward. Within a few weeks they had run out of treatment options. His lung disease had gone from rare to unique. I was coming in for checkups for the next few weeks so I'd pop upstairs whenever I could to catchup with the Heartkids guys. Heartkids is a charity that supports families whose children are needing heart surgery. It's a really good bunch. They have a morning tea a couple of days a week in the  Parents' Lounge of the cardiac ward. The guys who run the Victorian branch are lovely.

Things were up and down from then on. There were little improvements then big ones. His parents decided to celebrate his birthday every month since they never knew which would be his last. They were holding a tiny strand of hope. If everything went 100% perfectly he could still make it. That was a very big 'if'.  Every month they would post pictures of his celebration. He made it onto the ward a month or two later and from there they started talking about going back to his local hospital.  It was a very stressful scenario, a two-hour trip where any equipment failure or emergency on his part could mean the end of the line for him. Finally it happened. After much tense discussion between the doctors and his parents they successfully transferred him to his home town. He was set up at the local hospital.

His parents had to face the reality of getting him home on oxygen and needing lots of equipment. This meant modifications to the house. They had also been in Melbourne for several months by this time and hadn't been working. Being in hospital is quite expensive when no-one's feeding you. A friend set up a facebook page for them, where people could donate to help out with the costs. The numbers on this page started growing. It hit 1,000 in a week or two. Someone had the idea to hold an auction of donated handmade items. The numbers of page followers hit 1,500. The auction was a huge success. His parents were overwhelmed. Then the worst case scenario happened. He came down with a virus.

The world turned upside down from that point. He was unwell and continually unwell for about a week. Suddenly I checked back to find that he'd been transferred back to Melbourne with septic shock. He was in Intensive Care once more, where we'd first met them. He started to improve a little bit. Tiny steps in the right direction.

Then suddenly there was a post from his Mum. He had taken a turn and they didn't know what was going to happen. The ball was in his court and their hearts were breaking. All over the country broken hearts were in mouths waiting to hear what was happening. A sea of pictures of this little boy broke out as friends and supporters changed their profile pictures to his face, to show his parents that they were in our thoughts.

The next day came the message that this little man had spread his budding angel wings the evening before.

Finally he could be free.

Tomorrow is his celebration. Jacinta and I will drive up wearing our brightest clothes as requested, to help set balloons afloat and blow bubbles for him. Tonight I told my eldest what was happening tomorrow and why. "Poor Blake's Mum & Dad", she said. Though definitely the sentiment, it really doesn't acknowledge the enormity of the loss, and yet it so simply pinpoints what's at the heart of this huge community, 2,633 people strong.

The loss of Blake has really brought home how unique our situation is. This could have been any one of our children from the facebook group. I know that several mums were feeling the same way. It's surreal to be a part of a group where all our kids have their own unique medical issues. I'm sure no-one pictures their life this way until they're there.

A few times on the group there have been shout outs to pray for a little person who's in hospital and seriously ill. Every other time they've pulled through and gone home. Even in Intensive Care we were in the cardiac section where, as I mentioned, everyone was pretty much post-op and in no danger much.

This is the first time it has been really real to me that we belong to a group where sometimes children die. There was a video that Blake's Mum and Dad had posted back in Feb this year and they re-posted it this week. How bittersweet it was to watch the video from before I knew them, before they had any idea that their little boy would not make it, but how lovely a captured moment it was.

I have had this excerpt in my head all week.

From Alfred Lord Tennyson's poem In Memoriam:27, 1850:
I hold it true, whate'er befall;
I feel it, when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.

For anyone wanting to support Blake's family in any way, the Facebook page 'Blake's Million Smiles' is the place to go. 

Wednesday, 11 September 2013

Progress report

So it's been an interesting couple of weeks.
About two weeks ago I took Jacinta to her weekly NAET with Maria and found out there was a new vial. It's a kind of trial one, I think, so I'm not going to say exactly what it treats because very few practitioners have it, but it's a pretty basic thing. It can be put with any other thing.
Jacinta was treated with this vial and I swear that by the end of the 20 mins of waiting, her face  had changed somehow. She looked different.
On top of this, she started baby talking like someone had turned on a tap once we got home. I really wasn't sure if I hadn't just imagined all this and I commented to my husband, who reserved judgement until a little later when he commented that she was really talking up a storm.

So of course, to make things very straightforward, I also started up with glyconutrients again the same day. No particular reason, I simply got around to it. Thus I have two possible catalysts for  this change.
Another thing which started last week is that the local early intervention service finally sent around the physio who had been very hard to get onto. She left a feeding and other things chair which she says works the core abdominal muscles to help with crawling.

It seems that in modern physiotherapy there's not much emphasis placed on commando crawling (cross-pattern crawling on your tummy) and all the emphasis is placed on crawling (on hands and knees - creeping, for my US readers). It seems a little bit funny to put a baby in a chair for preference to work his/her abdominal muscles. I tried commando crawling a few times and each time my midsection got a really good workout!

Anyway, the physio gave me quite a few things to do and basically all I managed to do was to put Jacinta in the chair for feeds and move the toys she plays with in the car up a bit higher so she can reach up high and straight out if she wants to. The physio was really happy with her progress today so that was good. She can't see why I'd prefer to do the IAHP program since it's a lot of work and doesn't address the micro-stages, like 'how do we get from the floor to crawling and from there to walking?'. Physio seems to be very much about working the specific muscle groups one at a time.

Today the physio and I discussed her role and how she could support me to do the IAHP stuff because I think she could see I'm really doing the IAHP stuff as much as I can and she wants to be useful rather than coming just to have me pay lip service to her advice.

So she's given me a bunch of useful tools and fundamental principles to enhance Jacinta's core strength that can be done as part of living - i.e. picking her up or putting her down a certain way so that she uses her muscles as much as possible. I figure every little bit will help, so I just have to remember to do them.  Interestingly, the physio seems to think that Jacinta's about to take off in a full crawl - I have my doubts that it's that close since her balance isn't that great, but I can see her working really hard on getting moving so if she can start commando crawling that will be awesome so we can get some crossing of the midline going on.

We also got our very own crawling track last week, which is longer than the first - about 9 feet I think. In addition we now have our portable black and white checkerboard which we can use for visual stimulation, putting shapes and outlines on it etc, many thanks to Jacinta's Grandad and Uncle and nearly Aunt for making it for her.

So much to think about!! The possibilities are endless!

Something else that happened this week...
We watched Tinkerbell for the first time this year and I noticed something - all the fairies have almond eyes, flat nasal bridges and petite mouths. Interesting.....

Wednesday, 14 August 2013

So, it's been over a month since I posted an update on Jacinta!

For those of you who've forgotten, this is what she looks like....

 And so is this...

So we've been working on the IAHP programs. Not full-time yet. Not 100% capacity by any stretch of the imagination. The intention is definitely to be doing it fully and properly, but we're not quite set-up to do it yet.

It's been a little while now since I became familiar with the idea that to generate power you need to start from a stable point. If the source of the power is unstable, you don't get much going on. Right now this is the bain of my existence!! We're in trial and error land, in "let's see if this works..." territory.

We've put most effort into the food to begin with, as suggested. This has been fairly good. We're not drinking milk. We don't have cheese or yoghurt - except for a moment of weakness the other week when nachos were requested and I relented. We don't have wheat. Since I had spelt checked by Maria and it was ok, I'm using it at the moment while we transition. We've evicted sugar - mostly. We're not buying packaged foods - except coconut milk and coconut cream and some nut/grain milks and some spelt pasta. We're not cooking with oils thesedays except for a little coconut oil when I can sneak it in. It's really good with salmon....

I now own a Le Creuset pot (oooh), it's blue. I also own a cast iron tagine - and I actually know what it is and what it's for! I have a set of 3 - no, 2 glass saucepans. (oops!).  I also have a bamboo steamer.
There have been some nights though where I run out of time and realise that I can't cook dinner by dinnertime with what I have in the cupboards, so we get takeaway - which is a bit pointless!!

The extenuating factor has been that we need every member of the family to be in excellent health to pull this off and we've got a couple of stragglers at the moment, so it complicates things. Still, if we can get it all working with all this going on, then we can do it in any terrain.

Anyway, I got the NAET happening again. It had been a few weeks and I was starting to notice that Jacinta's muscle tone in particular was dropping. This has improved again and she's holding her weight on her two legs when I stand her up, which is so great! My other two were doing this from birth pretty much so it's been a real indicator of how floppy she's been by comparison.

Jacinta's on her second back-to-back cold this month, courtesy of the kids at school. Luckily she's pretty robust, and we've been NAETing everything Maria can think of so she's ridden it pretty well and hasn't had any feeding issues and has dodged the hospital admissions that so many of her contemporaries have been experiencing over the past month or so.

I've also been slack with the supplements. (I'm being totally honest here, for the sake of record keeping.) They've been pretty hit and miss, more miss than hit, which is ridiculous considering she's not 100% - but the trouble is that I have to remember and I've been a bit of a sleep-deprived walking zombie!! I need reminding to take my vitamins at the best of times. No excuse, but there we are.

Also, we've been getting as much floor time in as we can. I've been putting her down whenever she's not completely unwilling. I've had to time the prone floor time (tummy time) for when she's not immediately post-feed or she winds up with a face full of baby chuck pretty quickly, and I hear about it.  (Quite understandably.) Add this to the head cold and you can imagine the slimy muck she finds herself in quite often in the prone position.

Being winter (because in Australia it is winter right now - for anyone who isn't sure) the floor is also freezing, and I still haven't come up with a solution for that. Trying to put things over vents a bit to encourage the air sideways instead of upwards, but that's not brilliant. Any suggestions most welcome!! So in the worst case scenario, I put her down on her front and hear her yelling at me within a couple of minutes. I come back to find her with purple hands and a slimy face all covered in snot and baby chuck.  The look she gives me is quite understandable and I clean her off and put her down on her back with a blanky, which isn't ideal but I figure is better than being stuck in a pram all day.

So to summarise, I need to take my vitamins, I need to be more organised and definitely need to be doing more of the mobility program.

So despite this.....

On Monday we had the handover from the Maternal and Child Health Nurse who has been coming to our house, a brilliant lady named Deb who has been watching Jacinta grow from about 8 weeks of age, to another brilliant lady named Pauline who doesn't come to our house but sits in her office, who we've known a few years and who first met Jacinta at 7 weeks and referred us to Deb.

It was such a lovely meeting, to which we arrived a good 10 minutes late of course, but since we all talk so fast it didn't really matter.  Deb was so pleased with how Jacinta was doing, and how she was holding herself and bearing weight on her legs and giving kisses and putting on weight and growing nicely and being lovely and pink and just being no trouble at all and "sparkling" at Deb the whole time.

She's become so attached to Jacinta she says she feels like a grandmother and was just marvelling at everything that she's achieved and at how worried she was before her operation and how well she's doing now. She's very proud of her and may just accidentally happen to be driving by in the future and stop to say 'hello'.

Pauline gave her a weigh and a measure and was so impressed with her numbers (and I can't remember exactly what they were, but we've cracked the 6 kilos!) and where she's sitting on the chart and was remembering this little baby who came in with a nasogastric tube and breathing issues and not that pink at all really and seeing this healthy robust little chubba doing all these clever things and so alert, was really pleased.

In the end they ran out of housekeeping things to ask me. I told Pauline about the IAHP course and she liked the sound of it and since Deb was so interested in it I've said I'll bring in the book with the Institutes Development Profile in it so she can see it, which she's keen to do.

It's interesting that pretty much everything I've mentioned to her is something that 'they' now recommend  - it seems the world is slowly catching up with the experts!

So, despite my ineptitude and disorganisation, things are happening. It's sometimes hard to see them going on day to day, but every time we do some of this:

It get us that little bit closer to our ultimate goal.

Now it's time for me to get my butt into gear and get organised so I can report back soon with excellent progress and maybe some better photos!!
(I'm usually too busy clapping and cheering to take pictures!)

I've got nearly half the cards made for the reading program too, so I'll start that soon and report back too.

See you all soon!!

Out at the shops, snug as a bug!

Tuesday, 9 July 2013

Looking back, looking forward.

I was looking at a few things tonight and I thought it was worth posting this.

I recently heard some horrific things about abortion post 20 weeks and how it can be performed and I couldn't help but think that no mother would subject her foetus to that kind of death,  no matter what its health concerns and prognosis. It was so distressing to me I'm not going to detail it here. If you really want to know, I'm sure you can find out.

It's a rare parent of a child with Trisomy 21 thesedays who would consider abortion. Thesedays it's those who decline the genetic screening because they wouldn't abort under any circumstances or those who choose to go ahead with their pregnancy despite their increased risk or diagnosis who deliver babies with Trisomy 21, excepting that very small percentage who have a false negative.

There are a few things that bother me about the whole genetic screening process.

Firstly, that there seems to be a push from inside the medical profession to find and terminate all pregnancies of babies with Trisomy 21. The attitude of the GP who thought I didn't understand the reason for genetic testing when I said I didn't see the point is indicative of a line out there coming from somewhere that it's a helpful service that we would all of course want to take advantage of. (Not so.)

Secondly, when a person receives a diagnosis or an increased 'risk' (or more appropriately 'likelihood') of a Trisomy 21 diagnosis, they are referred for 'genetic counselling'. According to reports from those on the facebook groups of which I am a member, many of these sessions amount to bullying from medical practitioners or genetic counsellors who try to convince the mother/parents that they are doing somebody a disservice (the baby, themselves, society) by carrying their baby to term and delivering as planned. Sometimes the patient's own practitioner keeps bringing it up, visit after visit, well after the 20 week mark. (A baby can survive at 22 weeks, I know of one who did, not sure exactly how early is the earliest baby to survive ever.)

The information given to these parents is not balanced or correct. They are given a bleak picture of a hopeless, 'mentally retarded' (meant as mentally slowed, not as a derogatory term, but thesedays insulting nonetheless), utterly dependent social outcast who will be a burden to all those around him for the rest of his days and who will either be plagued with illness and die early or outlive his parents which creates the worry of who will look after him when they're gone.

Maybe once that was a real picture, but not anymore. The achievements of adults out there who live satisfying lives despite their triplicate of chromosome 21 are mounting. When a person owns his own successful business I don't think we can call him a burden.  A University would not risk their good name by bestowing an honorary PhD on somebody who was mentally deficient. Adults all over the world who carry Trisomy 21 are out there commanding the respect of their peers, despite the way they look, as are 'disabled' people of all kinds, worldwide.

The even more brilliant thing is that the therapies available now are the best that have ever been. There has never been a better time to welcome a child with Trisomy 21. If ever there was a time to be scared, which mothers of children or adults with Trisomy 21 will tell you there never was and they wish someone had told them that at the beginning, now is not that time. You can expect hard work, but a child born today with Trisomy 21 has so much opportunity to live a rich and full life as do we all - and yet not all of us manage that.

The information given to expectant parents should be balanced. They should have the opportunity to meet parents of babies or children with Trisomy 21 and adults who have the condition.

Next, the wording of the whole experience needs to be thrown out.

There is no 'risk' of Trisomy 21. There is a chance or a likelihood. Like there is a 'risk' of brown eyes.

Down syndrome is a dying term as medical professionals realise that it's a stigmatising label which doesn't help to treat the individual symptoms. It's Trisomy 21. They don't even know what the chromosome does, since the symptoms are so varied between individuals.

You terminate a pregnancy, you abort a foetus, or an embryo. You don't abort a pregnancy.

It's not pro-life or pro-choice. Choice and life are not opposites. It's pro-abortion or anti-abortion but even those points of view are rarely black and white.
(Pro-life or anti-life is a bit silly)
Let's not be weaklings about this subject. If a person is willing to end a foetus' life, call a foetus a foetus and an abortion an abortion. Don't say you're aborting a pregnancy because you're pro-choice. It's a grisly, horrible business. Doctors don't enjoy it. Mothers don't either. Let's have some guts one way or the other rather than glossing over the grim bits with euphemisms designed to make mothers feel less responsible by engaging in a very blurry act. I am not saying it is wrong here, I am saying that we need to confront what we are doing. We're dealing with life or death.

When the idea of having a child with Down syndrome entered my thoughts, it was because of a couple of anomalies in my ultrasound report. It made sense to me that if I had polyhydramnios and renal pelvis dilation in the foetus it was more likely than not that the cause for both would be the one thing. I googled.  I found a medical article in a sea of not much which mentioned briefly that it could be a soft sign for Trisomy 21. (A soft sign is also called a marker)

The thought of my baby having this condition was unthinkable. I could not imagine it. I knew two people with the condition. One, a lady in her 40s lived a happy life but to be honest, did not command a great deal of respect from those I knew who knew her, including me. The other, a 6 year-old boy, was highly regarded by friends, family and strangers who knew of him. I knew it would not be terrible, but still I found the prospect scary.

When the surprise came I just went with what I knew, which was the modern version. I knew it wasn't hopeless, but that it was going to be hard work.  I didn't expect how much it was going to change my life for the better. I didn't expect the rewards to be so great. There are so many soppy things out there about how a person's child with Down syndrome is their greatest treasure and how they have a smile that lights up their life 100 times a day. I honestly thought these people were deluded and creating a lie that they could snuggle up in and live in their own little fantasy world telling themselves that it was going to be alright, over and over again.

Here's what I've learnt so far.
My child is beautiful. Regardless of her Trisomy 21-related physical characteristics, she's a cute baby and she gets comments wherever we go. (No cries of 'Dear God, what IS that THING?' from anyone so far.) Aside from her face, she's a beautiful being who is very loving and so very understanding and patient. (And 'they' are not 'all that way')

The rewards really are that great.
Over the last six months I have been privileged enough to meet scores of other parents who are all bringing up children with Trisomy 21. They are for the most part the loveliest group of people I have met and the groups feel like family.
I have been introduced to therapies that can help not only my youngest daughter, but my older two and my husband too, with seizures, sleep walking, repeated tripping, hypersensitive hearing, reading problems....
I have experienced one of the extreme ends of life in the hospital with other parents of sick children and I have been privileged to access a new perspective on life. As it is when you have children and realise that life's not all about you, when you have children whose needs are extreme, you further realise that what's most important is that they are alive, then their ability to approximate normal and anything further than that is theirs to achieve if they want, not if you want.
Maybe it's just me, but I have also regained the ability to see the person inside the 'disabled' body, regardless of how they look. This means that so much more of the world is open to me and I feel much more comfortable in life.
I also appreciate that my lot in life is so much easier than that of a relative whose child has cerebral palsy, for instance, or a mother whose child hates her and wants nothing to do with the family, or whose child is terminally ill.
My family is now eating much more healthily because we have to. We're likely to enjoy the benefits of this for many years to come.

Without brushing a person off with well-meaning cliches like 'they're so loving' or 'they're so well-natured' like a breed of dog, (and I heard a great line by someone the other week, 'my child is not a puppy. He is not here to fill your life with gladness' or words to that effect), it's not only just 'not that bad' to have a child with Trisomy 21, it's basically just having a normal child who looks a bit Asian and has some developmental delays, maybe a speech impediment - which is really not that unusual!! (And possibly some other medical problems, but they're not insurmountable.) Any inbuilt negative reaction society has to people with Trisomy 21 are ours as a society to change, and this will happen over time, as more and more adults with the condition appear out and about living their lives, working alongside us and commanding our respect.

The things I was reading tonight were comments made by pregnant women on forums who had seen the very same markers as I'd seen and had been told it could indicate a chromosome disorder but not which one - odd. They were freaking out at the prospect of a sick child and looking for stories that it could be normal, which was what I looked for. I looked for ways in which it could turn out normal.
If it had, I guess life would be simpler, but looking back and looking forward, I'd be giving up more if I had the same old normal scenario. I'd be living a life with less challenge. Is that what we really want?

I really think that if an expectant mother was given a true picture of life with a child who has Trisomy 21, she would think even longer and harder about ending the life of her foetus. I suspect that many more would choose to forge ahead and see what life would bring. It is not my place to judge anyone for their decisions and I do not presume to, but I do think that a truly informed decision would be a different one to a partially informed and biased one.

I also think that if I was in charge of genetic counselling, I'd just get the parents to google the following phrase: "I regret having my child with Down syndrome".

That is all.

Wednesday, 3 July 2013

We're back!

Hi everyone!

As I suspected, my every second has been accounted for since the course, so this is my 'very soon' post about the Institutes for the Achievement of Human Potential "What to do About Your Brain Injured Child" course. (This was brought to Melbourne by the fabulous people at Grow Foundation.)

Before I get into it, this course is named after a book. The book was written many years ago in response to a huge demand for the above Institutes' services and the realisation from the founder that parents are a child's best therapists. It was found that many conditions with specific names (such as Cerebral Palsy, Autism, ADHD and even Down Syndrome, among many others) responded to the treatments that had been effective for stroke patients and the like.

Rather than referring to each condition by its own syndrome name, which didn't help treat the condition, they found it more helpful to refer to everyone as 'brain injured' or 'hurt', because treating them as such more often got them better. I've heard some parents react to the name negatively, but there's really no need.

Anyway, I decided to stay over at the hotel where the course was held, even though it was in my home city. The idea of getting out the door before 7.30 on a school morning, fed baby in tow, after arriving home from each course at about 8.30pm unfed seemed a bit far fetched. That was a really really good idea. There was homework every night and I struggled to get to bed before midnight most nights!
A few of us at the course had met previously online via a facebook group and it was like high school, with homework posts going on between us from our different hotel rooms.

The course itself was A-M-A-Z-I-N-G.

They talk on the first day about how the brain grows by use. By about the end of day 1 I could tell my brain had been used, because it just felt bigger. It seriously felt like there was less room in there. By the end of the week I could have sworn my head circumference had increased.

The course is done by video. They have recorded lectures given by key personnel at the institutes, including the founder, Glenn Doman, who sadly passed away in May this year aged 93. I have heard that he was lecturing up until the end of last year, which is a mighty effort.  As far as I know, the video version is taken on tour around the world to ensure that the course is the same no matter where you do it.

Now I have to say that this was a big learning experience for me, since I have studied a lot about the mind, but never given much thought to the brain and how it works. Many people and disciplines confuse the two, but I'm certain that they are not the same. Either way, this course simply deals with the brain, not the mind. More like a person's function, rather than their personality. It was fascinating.

Glenn in one of his lectures mentioned that one time a man from Australia attended the course and wrote to him afterwards saying that he had worked out that the course could be delivered in a fraction of the time if one simply removed all the stories.....but the stories are what makes the course.

The sheer number of good news items and miraculous anecdotes is brilliant. There really is hope everywhere you turn. It's almost impossible that nothing could be done for a child whose parents are willing and on board to run the program the way it should be run.

So I went from being a complete brain-novice to knowing the names of the basic parts and how they seem to relate to development, then working out approximately where the injury is, then working out what's needed most urgently in terms of a program and working out how to get started.

There are so many factors to consider in terms of the environment and Jacinta's nutrition. We'd started on this already, quitting wheat a couple of months ago and cutting right back on dairy. When you really stand back and take a look, the food we all eat thesedays and the world we live in is SO toxic! 100 years ago, if you'd showed someone a packet of Cheezels and told them what was in it, they'd have looked at you like you were mad for eating them and politely declined one.

So it looks like we're going super-hippy on the foodstuffs, which is not that bad really. As my husband said, "It can't be all that bad if it means I get to eat steak every night.".  It's also got me realising how my mum was again ahead of her time. The one thing they said on the food stuff was that if we did nothing else, if we ignored every piece of advice they gave us, we should at least just throw out all the heated oils we were using in food and not cook with anything except coconut oil. Just get cold pressed olive oil for salad. Apparently these oils go toxic when they're heated and even the extraction process heats them enough to do this.

I was cooking the other night and thought "I could actually save the fat from the meat I cook and use it again in the next meal, but how would I store it?", and then recalled an image from my childhood of coffee lids with fat in them in a little row next to the sink. This from an age when Mum only used olive oil for salad dressing, before we convinced her to use it in cooking. Bloody know-it-all kids!

So now I own a packet of quinoa, and have pronounced the word several times loudly and therefore am an expert. I have tried some experimental cooking, the least successful resulting in a kind of chocolate scrambled egg with some fairly raw quinoa through it, the most successful being a sort of maple syrup pudding with dried fruit which was quite delicious, but being the product of not-quite-terrible things that are still being evicted from the pantry will probably never grace my kitchen bench again.

I have also discovered that although I take my tea strong, with a little milk, and always will even if I never have a sip of milk again,  a weak black tea (particularly with some lemon and a little sugar) is actually quite good!

I'm even amazed to see that in our house, where we used to go through a good 4 litres of milk every couple of days (we'd buy them in 4s from the 7eleven where it's 2 for $5 and you can run in and out in 20 seconds) we've now used up the last of the last cow milk and no-one's much batted an eyelid.  My eldest polished it off last night without so much as an 'oh my goodness, last cow milk ever'.

It helps, of course, that we seem to have discovered the cause of those seizures mentioned in the first blog post which have been coming and going a bit lately, and that the remedy seems to be eating a strict diet of non-allergenic foods and water (plus rest).

Apart from the food stuff, we have to keep the house clean - which is a good thing, because I really want to but if I have to it's more likely. I've ordered one of those little vacuum robot thingies so I'm sure that will keep us entertained as it scuttles around the house of an evening picking up crumbs and hair ties.

I need to keep Jacinta on the floor as much as I can to give her a chance to catch up mobility-wise. It's been fairly widely acknowledged that Jacinta's well advanced in terms of social, audiological, visual, language development, but that mobility is delayed probably because of the heart issues and being on her back like a stranded turtle for half her life.

I'm brainstorming ways to keep the floor warm, having never realised that the reason my feet get so cold in winter is that the floor is actually much colder than the rest of the room! Five minutes after I put her down, she's freezing. I found a fluffy sheepskin at IKEA last week and it's brilliant for the short term. It's the wrong surface for moving, but at least she can be down there and keep warm, plus she can grab onto the wool strands to pull a bit and it's stimulating all her nerves wherever her skin touches it. Keeping her safe from her siblings' displays of love and affection is the next challenge!

Then there's the whole crawling program and the reading program, which is very exciting. I want to get a lot of this going with all three of my daughters.  We made the first card for our reading program at the course and took it home.
Not happy with the J or the t....
Then there's the swimming program. There are all sorts of things we can do, a little bit at a time many times a day, to get Jacinta rocking and rolling - or even better, crawling and walking!

One very interesting thing which I don't think happens a lot among those who attend the course is that on evaluating Jacinta's areas of ability (according to the chart which shows a person's developmental profile), she came out ahead overall for her age. This puts her in a category other than 'brain injured'. My goal when she was born was to apply what we could to keep her ahead of any delay that was meant to happen. So far so good. My dream when I went to the course was that she'd be not that bad and not have to have a really full-on program and we could do it in a few hours a day.  Being that she fits into the category of a well child (for now), and she's under 1 so a couple of the things are for bigger kids, it looks as though we will get away with doing everything we want to do with her and probably in a few hours if we want to do it that way, which is good since I want to include elements for all three children.

Also, it needs to be said, the Institutes are adamant that they will 'fight for your right to say "no"'. They want you to do the whole shebang and get the best possible results, but they're not about to guilt you into doing anything you can't or don't want to do. If you can do one thing, they'd prefer you do it right and consistently then trying to do lots and doing it badly or sporadically, is the impression I got. This was a big relief, to know that I am the master of the schedule we set for Jacinta. Possibly the further we get down the line, the more she'll need and the more we'll have to include, but it's a nice gradient for us at least.

So for now I'm preparing to become a social pariah, bringing my own milk wherever I go and declining foodstuffs at every turn. Thinking wistfully of the holiday we had just two weekends ago, where we ended off with a trip to the Yarra Valley Chocolaterie and Ice Creamery. The girls played on the sprawling lawn, I had to chase after them to stop the 2yo heading onto the highway - leaving my baby with a kind stranger, so much fun. Actually, the thought of chocolate and ice cream makes me feel a bit sick, but still I can dream of this wicked utopia.

We told my husband we'd take him there next time. Maybe not.....

Saturday, 15 June 2013

Stopping by on the way to the course....

Hi all,
            very excited because tomorrow is the start of the Institutes for the Achievement of Human Potential course in Melbourne!!
This means I have no time at all!!

Quick update:
Jacinta moved herself this week! That thing where you put your baby down and come back, do a double-take and think, "did I leave you like that?", that happened.

(I left her parallel to the floorboards...)

What's more, she had a go on her crawling track and she got somewhere!! (It's on a decline to give her help, but it's movement and we'll take it!)

I came across this brilliant blog post today though and I thought I'd pass it on, particularly for any other Trisomy 21 parents or prospective parents out there.

I'll report back really soon on how the course goes!

And here's a 'hi' from Jacinta!

See you soon!!

Monday, 3 June 2013

Kicking goals!

Well, it looks like the Pies have won again this week.  (Overseas readers, google AFL, Collingwood Magpies). This always makes me happy! Preparing to lose readers over that statement - such is life!
I thought I'd do this post in Black and White to celebrate. For a change.

And they're not the only ones who've been kicking goals.....(seamless link....)


I don't know how much I've been chronicling (that word just looks wrong, but spellchecker's letting it through) Jacinta's feeding issues...aside from on facebook that is. The 'expressing' posts were getting to a point where they almost outnumbered the 'where did my sleep go?' posts.

From the first hour of her life she was on a nasogastric tube. That was the first tiny kick in the guts for me, the point where I relinquished control of her care - temporarily. Not being able to ensure that what entered my baby's body and how was entirely up to me was a massive shift when my older children had been exclusively breastfed until solids, skipped the birth Hep B shot (since they weren't going to creche and we were advised that it really wasn't necessary in that case) and had the Vit K orally.

So through all the NICU and Special Care time, the goal was always to go home without the NG tube. Trouble was that she was a really good sleeper. My little munchkin's been sleeping through from birth. Sometimes that meant sleeping through the whole day when her body clock was on England time, but there was always a 12 or so hour period where she would not be woken for love or money. We never actually offered her money, but there was always plenty of love on offer!

When she was discharged from the Women's at four weeks of age, it was to Box Hill with the intention of getting her off the tube then home. This dragged on for 10 days until we very strongly hinted that we would prefer it if we could go home now and we'd just do the tube thing. Some people do the hospital for months and they have to, but we had had enough. We gave it a try to see if I could possibly wake her for feeding overnight since they did try the bottle each night but didn't get much action, but she wasn't having a bar of it.

So we were finally discharged not long after a conversation where the Nurse Unit Manager said "we really DO understand that you want to take her home as soon as possible..." since it really felt to us like the message wasn't getting through and we did have to ask obvious questions like " so if she's going home with the NG tube and she needs to see the heart specialist at the Children's on Thursday and we need 24 hours to get it organised and it's now Tuesday, why are we talking about discharging on Friday?" To which the reply was, "oh yes, I suppose we could discharge you on Thursday morning...", which was better than Friday!

Sometimes in health care things do go round and round in circles if you're not watching out and taking a bit of control of things yourself. If everyone's being cautious and waiting for everyone else to decide, things can take a lot longer than they have to.

So we went home with the NG tube still in, I was expressing every 3-4 hours (which took about 40 mins), feeding her (40 mins) and topping up by tube (which took 30-60 mins depending on how many interruptions there were)  every 3-4 hours.  She lost weight. She lost weight. Then she didn't lose weight, but she didn't gain any. We had the midwives coming out from the hospital to weigh her every couple of days.

It was a little frustrating, since we were having to go backwards. When we were discharged, we'd finally made it to fully breastfeeding with little or no topping up via the tube. This started reversing to more and more topping up and less and less breastfeeding. We had some gains again here and there and always when I documented every feed, how long, how many mls, every wee & poo. We worked out a basic formula and went on from there, with the MCH nurse now, and she started losing weight again. Started keeping strict records and we went up again, then all hope went out the window when she got a cold and we were back onto pretty much full NG feeds with a token breastfeed of about 5 mins once a day to keep in practise. It was about this point where I feebly asked the cardiologist if it looked like losing the tube had been put on the back burner and he said it would have to wait til after the surgery. Sigh.

From that point she started on diuretic medication too which also made her lose weight so the paediatrician stepped in and prescribed poly-joule (which I just can't stop myself calling polyjuice - Harry Potter tragic!), which is basically powdered junk food designed to make you put on weight. This was to be added to her EBM (which we all remember is what we call breast milk) at one scoop per 50ml. She told me to watch out for diarrhoea. I looked at the amount I was putting into her feeds once I got it home and thought it seemed a lot.

She woke up the morning after I started supplementing looking a little bit like a drug addict. Dark circles under her eyes, not brilliantly alert. I queried this amount with the MCH nurse. She rang the home base (she visits us at home) who didn't have any further information on dosage. I continued to give it as prescribed. By the end of that day, I decided that she was not right and worsening and the sunkenness of her fontanelle indicated that the diarrhoea she had displayed had caused dehydration and so I whisked her off to hospital where they pumped her back up full of liquid again. Next morning she was reinflated like a jumping castle after the wind has dropped.

Since the cardiologist had been making noises about admitting her if she hadn't started gaining weight, they kept her in to sort out the whole feeding thing. The dietician indicated that normally they'd prescribe 1 scoop per 200 ml, so she'd been having 4 times the usual dose. Ooops! (The next time I saw the paediatrician she indicated that she needed to apologise for the mix-up - "one scoop, one teaspoon..". No lasting damage so we'll let that one go. She's a good Dr.)

So they sent her home and hurried up the surgery which happened the next week. After the surgery she was on about 10-15 different toxic baby! All necessary, all very temporary. One interesting thing I learned when I asked about the morphine is that they give it after open heart surgery to stop the baby from breathing on her own so they can regulate it. Apparently that's what kills drug addicts when they overdose on heroin - they stop breathing. I guess that's just one of the questions that doesn't come up in life for most of us.

The morphine and oxy-codiene (I think that was what it was called....) combined with the diuretics to stop any fluid collecting near the lungs meant that her gut was dry as a bone and nothing was moving. We tried breastfeeding again as soon as she had enough tubes and wires out, but it was just too upsetting. She tried and would get really upset. When she was first born she would pass a bowel movement with every feed so I assumed each time it was stimulating her bowel. I could see that something was really bothering her although she clearly wanted to feed again.

Eventually after a couple of days of holding off, since I didn't want to start any neverending cycles of constipation/laxatives if it could be avoided, it got ridiculous. I think I held her pretty much 15 hours straight for two days and she wasn't feeling good at all. Crying a lot and through the tears making two distinct sounds, "mumumumum", and "owowowowow". Infer from that what you like! We gave her some lactalose down the tube, since she'd had way too much physical interference in that 24-hour period and she'd had enough. Finally, overnight, the floodgates opened.

Next morning, when she'd finally ticked the 'done a poo' box, they asked me how I felt about going home that day. I said, "not brilliant", since I hadn't anywhere near established feeding and had just spent the past two days doing nothing but holding my baby! To their credit the head Dr said, "OK, maybe tomorrow then", without a second thought and after he'd gone the nurse said, 'good answer. If you'd said it was ok, you'd be out of here today'.  Phew!

Things improved a lot that day and although Jacinta wasn't feeding perfectly, still very patchy and mostly tube fed, she was much happier and we even made it downstairs to see the fishies and have a coffee.

By the next day it was pretty clear that we were in a stable condition that could be maintained at home, still with the tube (sigh) but at least I could put her down.  We got the OK and were discharged at about 6pm that night. Kane and her big sisters picked us up and since it was dinner time we went down to the only thing open on the ground floor at 6pm on Saturday....McDonalds. And for the first time in months, Jacinta had a full, decent, proper feed. She actually didn't seem to need topping up. Woohoo!

So from that point on, we kind of got into a routine. I expressed still overnight to keep my supply going and tube fed as before. Her weight was still a little bit stagnant but then we found the infection. The wound had a bit of stitch still left in it which caused an infection so she was on antibiotics for a couple of weeks. During this time, I decided to see what she would do if left to go without tube feeds. I found that she would wake if she was hungry and not wake if she wasn't. So I tried a dream feed (bless your cotton socks Tizzie Hall!). She was awesome at the dream feed! (My eldest would never rouse for one and my second would wake up fully.) This meant I could drop the middle of the night feed and stop the middle of the night express! Once she was off the antibiotics, she started putting on the weight just as any 5 month-old would be expected to do.

After weeks of 'nearly!', when she looked at me last weekend and tugged at the tube, I said "oh alright then." I undid the last tiny bits of tape that hadn't come up yet and let her take it out. I was pretty sure she wouldn't need it back in. The nurse came and said 'she's got the tube out!'. I said it came out over the weekend and I'd double check with the cardiologist and paed that week to see what they wanted to do. The cardiologist said 'the tube's out!', and I said, 'not officially...'.
'Not officially?', he replied.
'I'll see what the paed says tomorrow', I answered.

The paediatrician wasn't there! It was a locum who was happy with her weight gain and fine with the tube staying out. Yay!!! What's more no-one wants to see her for at least a month, which is much easier on our calendar.

This week she had the assessment from the health nurse. She assessed her for 4 month-old things. Apparently she's right up to date or ahead for things a normal 4 month-old would do, except gross motor skills. The nurse says that the heart condition and hospital/surgery business totally excuses any delay in development on that point and she's exactly where she'd be expected to be if she was a genetically usual child with a serious heart defect.

So she's kicking goals left, right and centre! (From well outside the 50m line....)

That's my girl!

Jacinta sleeping through her first footy match c/o Heartkids Victoria.

Sunday, 19 May 2013


So we're home now.

I always feel like I should be able to describe what's happened in one word. As in, "it was so ....." or "it was such a ....". There should be a word to sum it all up. Sometimes though, an experience is so complex that one single word just won't do - sometimes supercalifragilisticexpialidocious actually doesn't cut the mustard.

I guess it all goes back a bit further than just this last hospital visit. I think it's been coming on for a while now. My perspective has changed. Not just a little bit. It's like I was standing looking at Melbourne from the top of Mt Dandenong and now I'm looking at it from the Eureka Skydeck, at night.
(For those non-Melbournians, Mt Dandenong is on the edge and the Eureka Skydeck is in the middle...)

I'm not trying to insinuate that I am now all-seeing and all-knowing, but certainly that my experience of people and situations is so much broader than it used to be and is necessarily much more accepting of diversity.

If I think back even 9 months, I was just wishing I could see more of my husband, hoping to buy a house in the not too distant future, thinking the car I have would do for now but be due for replacement as soon as the children stop smearing horrible substances all over the inside. My own acceptable standards for my beautiful, smart, funny, loving daughters were through the roof - regardless of what they thought. I was in many ways, deep deep down, striving for my perfect life, one with no great deviations from the norm and one in which we in my family were all doing better than everyone else. (Just being honest here. There is a slight competitive streak in me......) Again, no consultation with my family members on the competitive thing, just my own slightly unhinged goals.

It was this mindset which took the biggest blow when Jacinta was born - and deservedly so. Lucky, very lucky that I had decided before she was born that she was beautiful. I shudder to think how I might have tainted the first few days or weeks of my daughter's life with my own disappointment or dashed hopes, even ideas that this scenario was unacceptable - I did say slightly unhinged!

And looking back now I also feel a little ashamed that I let it get that far. It's certainly not how I was brought up. In our family, love was at the centre of everything pretty much. Sometimes it was tough love, but it was never absent. We never saw an ounce of hate pass between our parents or from our parents to us. Never a moment of resentment. Never a sarcastic joke at our expense. If ever one of us even joked that our parents didn't care about us, our Dad in particular would get very serious about making it very clear that they loved each and every one of us.

My parents extended the hand of friendship to others in need of friends. This sometimes made for interesting Christmas lunches. Our family friends included a family of Vientamese boat people who asked directions of my father one day in the '70s when he had driven the train they had caught, which resulted in him taking them out to buy a heater on the weekend. Incidentally, the eldest daughter of this family was working as a doctor across the hall at the Women's when Jacinta was there. Small world!

The story of how my parents met is very telling on this subject. My mother and father were both in a bushwalking club. They did the usual, checking each other out on the bus ride to the walk, getting to know each other as they walked along. The second time they saw each other, my father stopped short and asked my mother "what happened to your leg?".  She was over the moon!

When she was a baby she had had a birthmark on her leg which worried the "stupid woman doctor" as my grandfather would call her.   When she was still small, they x-rayed it and somehow (my mother said it was too close to the bone) her leg stopped growing for about a year or so. This meant that there was a noticeable difference in length between her legs. She wore a prosthetic boot from about 2 years of age.

My father had been so enraptured by her company the first time that he hadn't noticed what I suppose many would perceive as a disability. My Mum went to great lengths from a young age to challenge anyone's idea that she was disabled. If anyone even gave the slightest hint that they thought she couldn't do something because of her leg, she'd be doing it to prove she could.

When we were growing up, I used to get sick of people at school asking about her leg and what happened - mostly because at home it never came up and it was annoying telling the same story over and over again. (Poor me!) We used to cheekily put on her boot while she was getting dressed and walk up and down the hall with it for fun - until she'd remind us that she was kind of stranded without it and needed it back please!

So I suppose physical abnormality was a part of life from the day we were all born. Yet somehow I became intolerant of it. Why? Hmmm....not sure. I guess it's foolishness to think that all abnormality is the same. It's not. A guy with tongs for hands is not the same as a guy with a face that is bright red and knobbly. They're individuals. I recall staring at a guy I saw once who had a boot just like my Mum's. It was the first and only time I've ever seen anyone other than my Mum with a built-up shoe. I was stunned to see that on someone other than Mum and a moment after, I wanted to run after him and explain why I was staring. It all seemed entirely unnecessary though, so I went on my way.

So over recent months, I have come to know many people with children who have a physical abnormality. I use the term 'abnormality' very loosely, since 'normal' is such a broad spectrum it seems wrong to put some within it and some out, but for now we have an agreement of what a normal body looks like and does, so anything outside of that is an abnormality for now.

The gradual process of exposure to sick children in hospital and the outpatient clinic attached to it has certainly changed my viewpoint. The Cardiology area of the Children's is a very sociable area. It's part of the culture that you can talk in the Parents' Lounge to anyone there and have a frank conversation about how long you've been there, why you're there and how it's all going.

Half the parents on that floor are in Intensive Care - Cardiology or General, Rosella Ward. The Children's has the best Cardiology department in the country so the cases are often very specialised and a lot of people are from out of town. The Intensive Care nurse who looked after Jacinta on her first day there said that in that ward they get the most unbelievable things. They get the things nobody would ever conceive of happening. Apparently her children have been on the receiving end of lectures that start with, "if you EVER think about climbing on top of a train while it's moving.......".

In the Rosella ward at the Children's, everyone's got a story. "My baby was born with Down syndrome, diagnosed at birth and had a septum which looked like swiss cheese plus the surgery was complicated so she had to go on bypass for a second time while they ligated the surprise extra blood vessel" is a pretty boring story. Five days in Intensive care - nothing. A week staying in hospital with your child - a holiday. At least you get a bed - and meals? Luxury! Your family is staying at home, which is a 30 minute drive from the hospital - lucky!! You haven't seen your children for two days? The lady at the table with you hasn't seen hers for a month. If you haven't been on ECMO, you're small fry. Really.

This is nothing....

ECMO is a heart/lung bypass machine which can be run outside of the operating theatre. There are specially trained Intensive Care nurses who can use this machine. If your child is on this machine, it's serious. The Children's has the largest ECMO team in the country. If you live anywhere but Melbourne or Brisbane, they have to come and get you and bring you here. They send a whole team over, with the machine to hook up the patient and bring them back. If it's a smaller hospital, they have to bring surgeons and cardiac nurses, anaesthetists, the whole lot to get it hooked up. Sometimes they have to make a judgement call based on the likelihood of the child's survival before they go, since the excess baggage fees are around $3,000. It's a grim business.

In the parents' lounge, the conversation could go something like, "were you on ECMO?",
 "Yeah, just after surgery."
"We've been on it three times".

At the beginning you're talking about your surgery, then you talk to people who've had 6 operations since they came in a week ago. People whose babies have been an inch from death and they're talking about having 60% of their stomach removed, but they're alive and that's what counts. People who have what you've got and more. People who've got really rare chromosome disorders. The sort that are born once a year, not once a week. There are several children in the cardiac unit who have Trisomy 21. It was really nice to meet a couple of other Mums whose children were in a similar boat!

The day we were discharged, there were about 5 emergency calls in the rooms across the hall from us. We were already used to hearing the special alarm, the split second of silence before the clop clop of about twenty feet all heading to the room in question. On the second one we were in the middle of having an echocardiogram and the person doing it hung up her sonar thingy, excused herself and headed across to help. We hung out all gelled up while we wished every good thought for the guys across the hall who clearly needed our guy a lot more than we did right then.

Towards the end of our stay,  I was talking to some people who'd come in around the same time as us and were going to be there a bit or a lot longer. None of us could believe how accepting we'd become of these surreal realities we'd all been faced with. Again and again the conversation about how our perspective on life had changed and how people in everyday life would think it was such a big deal, but in there it's just what's going on today. One lady told me she'd been at the hospital for over a year dealing with bone marrow issues. Her daughter was back in ICU for about the 6th time and had just had yet another surgical procedure. She lives several hours away and has a roster with a couple of other family members so that she can be home with her other children too. She says that if her daughter gets rushed to ICU and it's a school night, she'll wait til morning before coming in. It's so routine that she can't justify dropping everything.

What I think I like best about the vibe in there is that there's no 'you poor thing' much going on. It's all 'that sucks!', or 'me too', or 'that's fantastic!'. One day early on, a family I'd got to know had some awful news and things weren't looking good. We'd just moved to the ward and had some tubes out and things were looking up for us. When the father of this child told us what was happening and then asked how we were doing, I sort of looked at the floor and shuffled my feet. He said, "tell me! I want to hear good news!"And he was genuinely pleased that Jacinta was doing well. It seems hope is catching.

One thing which made me really smile was when I was talking to my eldest about a little boy whose parents I got to know quite well in the hospital. He's a tiny little bub and he has a chromosome disorder as well, called Smith-Lemli-Opitz Syndrome. (No, I can't pronounce it.) He has a whole selection of unusual things going on, one of which is an extra digit on each hand and foot.  I was putting one of those wondersuits on Jacinta and excavating fingers from inside the sleeve to get it on right. I grumbled a little in wonderment about how tricky it is to get all five fingers through at the same time. "Imagine the trouble I'm going to have", said his Mum.

In the lounge another day, I was mentioning this baby to another lady I knew there who had a friend visiting. When I mentioned the extra fingers and toes, her friend's first comment was, "can they operate to fix that?", which stunned me slightly and I said, "or just leave it as it is". "Probably the least of their worries" added the woman whose friend it was, and who naturally understood that you're not in ICU for having six fingers. In defence of the friend, I could absolutely relate to that brand of thinking. I probably would have said the same thing last Christmas.

Once I got home I was talking to my eldest daughter about some people from the hospital and I mentioned the interesting thing about how this little boy has six fingers on each hand and six toes on each foot. "That's not fair!" she exclaimed, "I've only got five!".

In the hospital, everyone is flawed. Some are fatally flawed, which is a horrible thing and luckily in the cardiac section you're spared that mostly, since most kids are just out of a routine operation and will get better and go home.

Like this....

Everyone has a story and everyone has scars, literally. Some have no hair. Some talk to you but are fixed looking at the ceiling while they speak perfectly normally. Half the kids are wheeling round their IV line. The other half are still stuck in bed.

What happened in hospital is I lost the discomfort that goes along with disability. Disability became normality.

There is a facebook page called "Disabled Life Media" which I enjoy. There was a post up there on 7th March of a tweaked goofy grim smile and the caption along the lines of "the face people make when they see a disabled person in the street". I have to say, I cringed. I have pulled that very face at a wheelchair-bound person more than once. I was lost for a bit when I saw that. I obviously could never pull that face again, but what should I do?

I guess I will now just walk on by, say 'excuse me' if I need to get past or make a friendly remark if appropriate. I think though, disability in my world is no longer something which stands out in the way it did before. I may go backwards of course, but for now it's just part of the spectrum and the diversity of the landscape of Melbourne, wherever we are.

And a gratuitous cute shot!