Getting with the program.

So now I was home from hospital.

Everyday life had started. We had our weekly parking ticket and we were in it for the long haul.
It was time to work out what we were doing.

From the very beginning I knew that we would be addressing the Trisomy 21 from several angles. I knew we'd be on various supplements, doing NAET treatments and doing the program from the Institutes for the Achievement of Human Potential (IAHP). Also Scientology assists would be used as well, since we use them every day to help heal physical problems. Where someone else would take a tablet, I grab the homeopathics and do an assist.

In terms of the treatment side of things, we were very keenly aware that time is the enemy of the child who will have developmental delays.  We found out that glyconutrients could be started immediately. Now, one thing you learn pretty quickly with natural medicine and remedies and even quicker when looking for solutions to the problems associated with Trisomy 21 is that Google can be your worst enemy.

Any time you ever go looking for information on something to do with lesser kmown natural remedies there is always a very big and haughty presence proclaiming whatever you're considering to be dangerous and ineffective. If they can't pin danger on it, they just go with 'it couldn't possibly work'. (Once you find several of these articles, if there are plenty out there saying it's good, you can bet it's worth a try).

Glyconutrients are no exception.

We were also lent a few books. One was the story of a girl named Michelle Desrochers who took glyconutrients from about age 9 and had amazing improvements in her health and mental capacity. In addition, her physical features gradually changed so that she more closely resembled her family and the classic Down syndrome features were much less apparent.

Another was written by a man named Raymundo Veras, an eye surgeon from Brazil who found the IAHP program and set it up in his home town. As part of his work, he discovered that the Institutes' programs could benefit 'Mongoloid' children, as they were known then. It is called 'Children of Hope, Children of Dreams'.

The third was written by two of the IAHP staff and it goes over ways to increase the intelligence, mobility and perception of your baby. It employs the diagnostic chart used by the Institutes and a parent can evaluate their own child and adopt a program to promote faster development in one or more of these areas.  This book is entitled, "How Smart is Your Baby?".

Kane and I grabbed one each and started reading. If googling is the killer of hope, these books were the spark that reignited it. It was almost like living between two universes, the one with no hope - the conventional Down syndrome website path, and the one with hope - the one with books where solutions abound. Lucky books are in real life and websites are just pixels.

I have to make very clear also that any depressing stuff I found was only a fraction of what Kristen had to go through. I had solutions at my fingertips. I didn't have to wade through website after website of hopelessness to find the gems that even a few weeks in were already working magic. For this I will always be very grateful.

Anyway, back at the hospital they had done an initial echocardiogram (echo) and found an AVSD. That would be an atrio (to do with the atrium/atria) ventricular (to do with the ventricles) septal (to do with the septum, the wall between the left and right sides of the heart - or the oxygenated and de-oxygenated blood) defect. Carl, the paediatrician, wanted to wait until Friday when the Cardiologist from the Children's came over to have a look before they made any decisions. He wanted to confirm it.

Friday came along and the Cardiologist came. He did the echo again and at the end, they took Kane and me off to a side room and sat us down. It was a little like being in the principal's office when you don't know why you're there.

We were drawn a picture which I didn't really understand and told that there was the AVSD, which amounted to several holes in the wall down the middle. There was also the special valve that should close over at birth which hadn't, plus there was a problem with narrowing in the aorta. (I still don't know exactly what the aorta does except that in the drawing it went round the heart.)

The upshot of this was that Jacinta would be needing surgery. Possibly two bouts of surgery. Possibly within a couple of weeks. If the arteries got narrower, she'd be in trouble and need an urgent operation. The idea of our tiny 2-3 week-old baby being put under general anaesthetic and having drastic surgery was not a favourite, to say the least, and Kane and I are accustomed to being able to do something about any situation rather than being completely at the mercy of what comes our way.

So we went down to the cafeteria to digest what we'd been told. We looked at our arsenal of weapons. What could handle body parts? NAET. How do you get NAET done on a baby in hospital? Get a practitioner to come to the hospital. So we decided to see if Maria, who had worked with Gryffin, would be willing to come out to visit a baby she'd never met when she was still on Christmas holidays and her surgery was not open again yet. And....yes, she was! She agreed to come out within about 24 hours and start NAET with Jacinta.

Then we wondered if the hospital would mind. We figured we'd handle that if it came up. We let them know that the naturopath was coming and would be doing a procedure. We'd already been doing assists several times a day since she was born, so what's another unusual therapy thrown in? No biggie. They were mostly just pleased to see us being proactive about our baby's condition at this early stage.

So we began the regimen. Getting glyconutrients in and NAET done became the most important things we could do. This meant breastfeeding  as much as possible since I wasn't sure how well the glyconutrients would survive the refrigeration/freezing and rewarming process. Maria came out to the hospital for us every few days in the evenings.

Prior to the NAET starting, she was swimming in a fog. Kind of like when your baby is asleep with their eyes open. She rarely had her eyes open and when she did she wasn't alert at all. This was in stark contrast to my other daughters who were on the ball from birth. (Though not unusual for a baby with a heart condition or Trisomy 21.) When I arrived the morning after the first after-hours NAET treatment, she had arrived also. For the first time since she was born I could see her actually looking. The drowsiness had lifted. This was such a relief! I could finally get to know my daughter.

We kept the NAET going, with Maria coming in to the city whenever she could. Jacinta got stronger on the treatments, mainly on brain & body function, heart and lung things with a couple of other helpful ones thrown in. We checked the different supplements I was taking to be sure Jacinta could absorb them and how much she needed me to take. It's fascinating how much can be gleaned through kinesiology.  The next scan was done by the paediatric consultant. There was a 'huh', because she couldn't really see any problem with the aorta. There was narrowing, but nothing major.  It was checked again a week later. Still stable. Finally another week later, they ticked it off as not being a concern. Woohooo!  One bout of surgery dodged.

Bit by bit also her tubes and wires had come out. Her platelets had finally sorted themselves out - took a few weeks of up and down numbers and a few transfusions, but she got there. Luckily, or on purpose, she had fixed that up right after they took out the umbilical line that was going to her bloodstream. They had intended to replace it with an intravenous line, but after two failed attempts had given up out of kindness and hoped for the best. If they'd had to do another transfusion they would have had to put a line in again so she did well on that one!

Her breathing also improved bit by bit. What I didn't know at the start was that they can go backwards and forwards. We had started breastfeeding when she got her CPAP contraption off, then a few days later I came in to find it back on and breastfeeding was halted since it was apparently too hard with the tubes in (though if it was just up to me I would have tried anyway!). So it seems these babies in intensive care go a bit up and down and take a step backwards here and there. You get very used to the uncertainty and the sudden leaps forward.

So after several weeks of commuting to the city every day and sometimes at ridiculous o'clock in the morning to try and catch an awake period for a breastfeed, the cardiologist rang in to say that he'd seen the scans and the imminent surgery wasn't needed (yay!) so it would just be the second lot of surgery to fix the holes (hmmm) at 2-3 months (what? you said 6-12 months!). Upside - we could be transferred back to her birth hospital which is only10 minutes from our house. Downside - if we were going to avoid surgery altogether, we had about 6 weeks to get that heart fixed!

The race was on.....