Thursday, 28 February 2013

Hello World Part 3

I have known Kristen Morrison and her parents for several years and I've met Gryffin along the way a few times.

Some months after Gryffin was born I was talking to his grandmother about his diagnosis and the therapies his parents had been discovering and doing with him. I was interested to find out about this stuff because my nephew has cerebral palsy and if there was something I could find out that could help him too, I was all ears. 

I was told eventually that Kristen was writing a book detailing it all and the ebook was born. I remember the day it went up for sale. I thought, 'I must get a copy and read it'. By that stage I had my own little daughter and a mother who was terminally ill and who I was visiting every day. Plus, I lived miles from everyone. Time was not plentiful!

I kept thinking I wanted to read it. It was published and turned into a real solid book you could hold in your hand, with pages and everything. I still wanted to read it! I still didn't manage to find the time. 

I heard that Gryffin was kicking goals and exceeding all expectations. I heard that Kristen was setting up a foundation to help the families of disabled children to access treatment. I played and sang at the launch dinner while people had their canapes. I kept thinking I really should read that book!

I spoke to Kristen not long after and mentioned that I still meant to buy and read her book. She said not to worry since I didn't get the gift bag that everyone at the dinner got and a copy of the book was in it. She said she'd send me one. 

When the book arrived on my doorstep I read it within about 2 days. It was fascinating. I told anyone who seemed remotely interested about it. I followed on facebook to keep up to date with what was happening with the people who were doing what the Morrissons had done. It was all so exciting. A new era for children with Down's syndrome. What these guys had done was seek out and find solutions to many of the problems that Down's syndrome presents for those with the extra copy of chromosome 21.

Over several years, being a regular commenter on facebook and interested spectator, I followed the progress of Gryffin and felt so much joy for my friends as he did so well. What I didn't realise was happening, was that my benchmark for 'normal' in terms of Down's syndrome was changing. I didn't realise that when I thought about a person with Down's syndrome I didn't think of the classic features with the difficulty communicating and moving, the low intelligence - even though I had seen first-hand so many examples of this. Gryffin was who I now thought of as representative of a person with Down's syndrome. 

In the late stages of my pregnancy with Jacinta, in fact only two days before she was born, Kristen posted on her facebook page that Gryffin had seen the psychologist in preparation for school and had been classed as being at normal levels for everything except speech (which is still being worked on). For a classic child with Down's syndrome this would be amazing! His Mum was rightly thrilled! I was so happy for her and for him and for their whole family since I knew how much effort they had put in over the years to achieve this kind of result. 

Jump forward two days and we're sitting in the special care nursery with the paediatrician saying the words "Down's syndrome". 

My immediate thought was, "we're in for a lot of work over the next five years". I told my husband we needed to call Kristen and find out what to do. He was on the phone to her within an hour or two finding out where we start. The journey had begun. 

Over the next few days, I began to realise exactly how lucky I was. Just me. Not even my husband was as lucky as I was. I alone had read Naturally Better and followed Gryffin's progress. I'd kept my husband up to date with things and I'd told him things I found interesting, but he hadn't really looked for himself so hadn't absorbed it. The first few days were hard for him as he readjusted his idea of what a diagnosis of Down's syndrome meant. 

Finding out was particularly hard for some in our family who have seen close-up the difficulties that were faced decades ago when growing up with Down syndrome. It was like a death knoll for hopes and dreams. Luckily, we had Naturally Better. Once my husband had read it, he had something to work with. He started really looking at what Gryffin can do. Our other relatives read the book too and arrived at the hospital with a new outlook and hope and determination in their eyes to do everything they could to help Jacinta thrive and achieve her potential. 

In the foreword to the book, Joseph Morrison expresses the hope that the book can save parents the worry and stress that they had to go through and make the ride easier for parents coming after them. I have to say, it has. It did. In SUCH a big way. Since the moment Jacinta was born 7 weeks ago, I have never had a thought that she will live a hard life or that she will not be able to do what she dreams or that she'll be reliant on me for the rest of her life - far from it! (Though this is not to say I imagine a cruisey time!!)

I had all sorts of counsellors talking to me about how it's ok to experience grief at the loss of the baby you thought you had etc...but this never happened.  I had a big change of plans for the next five or so years, but that's it. We're expecting big things and big things are already happening. It really seems to me that this is a new era for children with Down's syndrome. 

This is the end of my intro, I hope it lays the grounding for what I post in the future about what we do. I'll be doing catch-up posts for the next few then hopefully it'll be more up-to-date. So much has already happened!! I'm so chuffed that everyone's enjoying it so far so thanks for reading and I hope you continue to enjoy it as we go forward!


Wednesday, 27 February 2013

Hello World Part 2

So, to gloss over the seizures, we were VERY BUSY for the next two or three months. Then when it had all settled down it was November and end of year stuff and Christmas preparations and so when I had to go to the GP to get my blocked ear unblocked on Christmas Eve, I thought I really should get that ultrasound report.

Leading up to that point, over the previous few antenatal visits, my measurements had been a bit all over the place - mostly a month ahead of my weeks. This prompted an ultrasound to check the size of the baby. So, along I went to said ultrasound which showed a baby (girl) weighing approx 7lb 13oz (just above the birth weight of my eldest) and a very high normal level of amniotic fluid (polyhydramnios). The radiographer asked if everything was normal in all the other ultrasounds and I told him it was. He said 'we can't always check everything at this late stage because it's too hard to see'. There seemed a slight hint of 'something seems amiss....' about this exchange, but I let it go.

Anyway, having just been to my hospital appointment to receive these results, I collected the earlier report which stated there was renal pelvic dilation at the upper limits and this needed to be checked again in the third trimester. "Oops!", thought I, and "what the hell is a renal pelvis?" thought I next.
Here I started googling. (Apparently the open space in your kidney, where wee is collected, is called the pelvis. It can be dilated.) So I went into the second ultrasound 10 days later very well informed.
Again, things were at the upper normal limits. Checked the amniotic fluid again, upper normal limits again. Nothing to worry about apparently. These things sort themselves out more often than not.

Yet the fact that both these things were going on bothered me slightly. It seemed to me that if something was going on and two things were amiss, something was causing that. I thought I'd google both and see if anything came up. That was an eye opener. In a sea of not much, there was one little article which mentioned polyhydramnios and renal pelvic dilation together being soft signs (things that can mean something when present together but that don't necessarily mean that at all) for Down's syndrome.

I took a mental step back. What? Really?
Freaked out for a minute. Then read that babies born with Down's syndrome usually were small with a low birthweight. I was clearly having a big boofer of a child, so that pretty much ruled that out.
Even so, I mentioned it to my husband and asked him what we'd do if the baby was born with Down's syndrome. He said we'd do everything we could to give it a normal life but that it wasn't likely to happen so why worry.

I couldn't help it. I did worry. It was a big bad unknown and I just couldn't shake the niggle.
Eventually, I decided that worrying wasn't going to solve anything and was just going to ruin the rest of the pregnancy and so I decided to find a positive thought that would be true regardless of the outcome.
I decided that when my baby was born she would be beautiful. Nothing would change that. From that moment, my worries ceased and I went on to live out the rest of my pregnancy, unperturbed.

That was the best decision I could have made.

After what, for me, was a short labour (only 15 hours on and off) our daughter was born after only 45 mins at the hospital. 10 minutes after she was placed on my tummy she was whisked off and put in the special crib with respiration help and sent off to the special care nursery. I had only cuddled her tight under the warm towels and seen her squashy, slightly blue face with her eyes closed. I wondered who she looked like. I couldn't really tell. (Unbeknownst to me, my husband had seen her much better in the crib and he had started wondering.....)

Eventually, I was allowed to go up to the special care nursery. The paediatrician was looking her over and eventually she gave us the rundown, facing the baby - perhaps so she didn't have to look at us,
She had trouble breathing, enlarged liver, enlarged spleen, heart murmur, low platelets and dodgy white  blood cells plus physical features that were consistent with Down's syndrome.

At this point, there was no shock or upset, though my plan for the next 5 years changed completely. Two factors played a part in this. One, my decision that my baby was beautiful and that was all that mattered meant that I had already dealt with the shock factor and turned what could be perceived as a bad thing into a good thing. Nothing the doctor had said could change the fact that we had a beautiful little girl.

The other factor was my friend Kristen, her son Gryffin and her book, Naturally Better.....

Hello World!

Well hello world!
Let me introduce you to my story.

The main part of the story began 4 weeks ago, on Sunday 6th Jan 2013 at 3:45 pm.
Our little baby girl was born at a healthy 9lb and 1/2 an oz and whisked away to special care because she was a slightly alarming shade of dusky pink. Within hours we were told she had an enlarged liver and spleen, a heart murmur, low oxygen levels - oh, and Down's syndrome.

Well, that was a surprise! My first thought was 'ok, the next few years are going to be a lot of hard work!'.  I was slightly stunned but not completely shocked. Let's backtrack a couple of weeks...

Well, a couple of months. Ok, about 8 months...

In April 2012 we moved house. As usual, the alignment of my husband's work contracts and the lease was such that the move happened in a big rush and we only had the new house secured within days of the end of our lease at the old house. It was a crazy time. My husband was commuting to Sydney on a Sunday night and arriving back on Friday night to spend the weekend at home. Needless to say, there was not a lot of time for thought about anything else.

Towards the end of April then the start of May I started to wonder about my cycles....on thinking back I couldn't remember a period at all during April, or the last couple of weeks of March. I did a pregnancy test and, hey, it was positive!

The next few weeks were very interesting. I counted back and thought I must be about 6 weeks at that point. I didn't get a chance to get to the Dr about it, so it wasn't until a couple of weeks later when I'd had bleeding for several days and thought I had miscarried that I fronted up. I was sent straight over for an ultrasound which confirmed I was pregnant (Yay!) and was 6 weeks and 2 days (WTF? You mean I have 2 extra weeks of first trimester to go??? Noooo!).

Anyway, I was told to take it easy since there was still a 50/50 chance of losing it. Easier said than done when you're on your own with a 4yo and a not-quite-2-year-old!

Everything seemed to settle down then. I went back to the Dr for a follow-up and had the discussion about the 13-week scan. I declined, saying I didn't see the point in finding out about genetic defects. The doctor helpfully replied that if it came back positive I'd have the opportunity to.....and I didn't let him finish the sentence. I told him flat out that we wouldn't be taking that opportunity. I still hope that I didn't get the wrong end of the stick. If we missed out on the opportunity to get free chocolate.....

And things went on like this so that I had my 20 week ultrasound the same day as my very late first hospital appointment with the Baby Dr. I had thought I'd find out the sex this time - having 2 girls already found us in possession of looooaads of pink frilly items of clothing which could cause a serious problem on washing day for an unfortunate unexpected boy child. We all went to see the scan, my husband and daughters and I. Normally the radiologist asks whether or not you'd like to find out the sex, but I was so caught up with what my girls were doing in the room that I didn't notice until the very end that she hadn't asked and neither had I. All of a sudden, 'that's all we need to do, it's all normal", and she was gone.

Then the next week my husband started having mysterious seizures.......