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.....