Monday, December 28, 2009

a slight deviation from the story....

I'm taking a bit of a liberty today and veering ever so slightly off the topic of Button and his journey. You see, this blog was never meant to be just about how sick he was and the struggles he has been through, but I felt the story had to be told as it is all part of who he is.

But today, as I look at him playing with his beloved LeapPad and watching Hi5 dvd's, I wanted to dwell on the present rather than the past. I know his story so far may seem sad and tough, but he is so much more than his past. He is a happy, funny, healthy little boy, who just happens to have Autism.

I'm not a particularly religious kinda girl, but I'm a great believer in fate - as my granny used to say "what's for you won't pass you". And I firmly, with all my heart believe that Button and Belle were "for us". People often say to me how "lucky" my children are. To be perfectly honest, they are not. It is not lucky to spend the first few months of your life in an orphanage, nor is it lucky to be taken away from all that is familiar to you and placed in the arms of a stranger. Mr Taz and I are the lucky ones - and fate was certainly smiling on us the day our children joined our family.

I have been lucky in so many ways. I have a really wonderful husband, healthy and loving parents, a pretty cool brother and lots of great in-laws. All of them have been so supportive of Button and have taken the time to learn about autism and how best to interact with him to get the best from him and cause him the least stress.

And now I have a new reason to feel lucky! Well, at last count 165 new reasons. My wonderful, amazing, inspiring, absolutely hilarious new facebook friends. I want to take this opportunity to thank you all for all the love support and fun that you have brought me this year. Through the good days and the bad you have been there, just a click of the mouse away. I've said before that if it wasn't for adoption and autism, I wouldn't know anyone! And I'm so glad to know you.

I hope you all have a really happy and healthy New Year, full of wine, chocolate and full night's sleep.

Thursday, December 17, 2009

A Whole New World

The day before Button's first birthday he had surgery. He had some lymph nodes removed to check for active TB cells in order to confirm his diagnosis. By this time we had been warned that even if he did have TB, it could be a drug-resistant variety, or that it could even be some weird and wonderful tropical disease. We had had him for 3 weeks at this stage, and I had never left his side. We had built up a tenuous (on his part) bond. Mr Taz, Nana and I had been with him through everything , we had declined to use masks and gloves when with him - I was his Mommy not a nurse and I wanted him to know the difference. I felt like I was letting him down when I handed him over to the surgeon, and even though I stayed with him until he was asleep, I have never felt so guilty as I did walking away from the anaesthetic room.

The surgery was uneventful - and Button spent his first birthday hooked up to a morphine drip surrounded by balloons and birthday cards. Everyone made a huge fuss of him, and in it's own peculiar way, it was a really lovely day!

The day after his birthday brought the wonderful (yes, wonderful) news that Alex had good, old-fashioned TB! He could continue his medication and should hopefully make a complete recovery! I could now start thinking about our future as a family.

Another surgery followed to insert a central line so his medicine could be administered more easily. He was on four different types of medicine, one through his "Freddie" daily and the other three orally, at various intervals throughout the day. We decided that rather than me learning how to administer his IV meds, I would take him to the local hospital every day, where they could also keep an eye on his weight. This would go on for at least 6 months.

So our new life began. We got into a routine - every morning I would put numbing cream on the back of his little hands (he needed bloods done regularly to check the levels of medicine in his system - too much could be toxic, too little and his infection wouldn't clear), and we'd head to the hospital about a 30 minute walk away. He'd have his bloods done, his line flushed and medicine given. Then we headed off, to face a day full of charting medicines, trying to get them into him, trying to make sure he kept them down and trying to make sure he ate something. Stressful is not the word for it! He woke every hour during the night, and hardly slept during the day. But he was home, and aside from the exhaustion, it was heaven. He slowly began to put on weight, and his interaction with me improved. I could finally see a light at the end of the tunnel.

Friday, December 11, 2009

Home Sweet Home!

TB is a cruel illness. Button coughed like an old man on 60 cigarettes a day, his chest rattled as he breathed, he had no appetite and at nearly one year old weighed under 11lbs. He was a very sick little boy. The day after we arrived home we took him to see our GP, who arranged to have him admitted to our local hospital the following Monday. So we had one blissful weekend of normality - well, if waking every hour to check he was still breathing and never letting him out of our arms counts as "normal"!

We arrived in the Paediatric ward of the hospital and met the wonderful Dr G. Little did we know what an important part of our lives this dedicated, caring woman would be. She arranged for a battery of tests, and gave him a thorough examination. immediately she noticed that he had high muscle tone in his right leg, especially his ankle, and that he was seriously behind in his developmental milestones. He could not sit up unaided, and could barely turn from his front to his back. She wanted to be sure of the diagnosis of TB, and to rule out any other serious illnesses (particularly HIV and Cystic Fibrosis).

He had a CT scan of his brain which showed that he'd had a bleed at some point, probably in-utero - he had Cerebral Palsy. That was a dark day - up until then I had managed to convince myself that with the right medication, and some physio Button would be "perfect" - but as she spoke those words to me, I knew our lives were altered forever. I was the proud mama of a special needs child.

Dr G decided that Button's needs could be best served by a more specialised hospital - so after a week we were transferred to Crumlin Children's Hospital, under the care of the Infectious diseases team. It was still vital that the TB was confirmed, and as he'd been on treatment, the normal tests would not work. it was necessary to do a biopsy on one of his lymph nodes. His weight was still a huge concern too, as he was hardly eating or drinking. So a nasogastric tube was inserted. This was the only procedure I left the room for - I had been there for every other needle, examination and blood test, but i just couldn't do this one. When I returned to the room, he was propped up on his pillow, quite calm and relaxed, but I lost it. Now he looked sick.

As I looked at his little face, with those huge brown eyes making fleeting eye contact with me, I thought of all he'd been through to get to this point. And I allowed myself to fall completely, irrevocably and totally in love with him. If ever there was a child who needed someone in his corner, it was Button and if ever there were a set of parents ready to do what was necessary for their child, it was Mr Taz and I.

Game on!!

Tuesday, December 8, 2009

2nd time lucky!

As I'm sure you can imagine, our arrival home was nothing like we had imagined. No banners and balloons in the airport to greet us, no cheering crowds, no open-top bus - ok, so maybe that would have been pushing it a bit, but a girl can dream!! Instead, we slunk quietly home with an empty car seat and broken hearts. It was the hardest day of my life.

I pretty much hid myself away when I got back, I didn't want to have to keep repeating the story to people who were expecting to see me with Button, it was all too raw. Mr Taz was my rock, he protected me from well-meaning visitors and screened phone calls. I have never loved him more than I did in those tough weeks. He phoned Thailand regularly, and after 2 weeks, we were told that Button was out of hospital and doing much better. We could go back and get him!

Once again, bags were packed, flights were booked and fingers were firmly crossed!! Our trip this time was, to say the least, complicated. It involved a delayed flight, a missed connection, overnight in Amsterdam and a slight detour to Delhi (yes, I said Delhi! - but that's a whole blog in itself!), but we eventually arrived in our by now familiar hotel. After a brief nap and a very badly needed shower we were taken to see Button again, but not in the hospital - in the Baby Home! I cannot even begin to describe how it felt to see him again. No tubes or wires, just my son.

While we were in Bangkok, an event called the Nativeland Visit was taking place. Every 3 years the Thai Government invite all the Thai children who have been adopted around the world to return for a week of activities, and a special audience with the Princess. So there we were, with the newest addition to this adoption family, surrounded by hundreds of Thai-born kids with American, German, Dutch and of course Irish accents! It was a wonderful, if slightly surreal experience, and very comforting to see such happy well adjusted children and young adults, even if (as one American teenager told us) they'd rather have gone to Hawaii!!

Our goal was simple - to get Button and return home as quick as we could before he got sick again!! So 6 days later we were on our way. It was an uneventful trip for the most part, except for what has gone down in family history as "The Amsterdam Incident". Suffice it to say it involves a very messy nappy, and a well aimed wee! No fancy-schmancy coming home clothes for me and Button, but Mr Taz looked as fresh as a Daisy!

The banners and balloons were there, as were the doting grandparents and aunts and uncles (who all managed beautifully to hide their shock at seeing such a small, sickly baby). And on the drive home from the airport we had a baby in our car seat at last.