Tuesday, 2 April 2013

Hospital Appointments

Enjoying his tram ride
It seems that the past couple of weeks has been a blur of appointments for Felix and, unfortunately, it looks like he will have to have three general anaesthetics over the coming months. One for his ears, one for a hernia and one for an MRI to check on the development of his hydrocephalus (fluid on the brain).

I took Felix to see the Ear, Nose and Throat specialist to see if he needed to have a new grommet put in his right ear. I had to grit my teeth, the entire appointment, because the Doctor was very patronising, and not exactly positive towards Felix, or the fact that he has Down Syndrome. Felix walked into the room, full of smiles and waving at the Doctor, but he wasn't acknowledged at all. Felix was referred to as one of "these types of kids", and the Doctor even said, "Their ears are not normal, and so we just try to make 'them' as comfortable as possible". He made it sound like Felix had a terminal illness. He wasn't even going to worry about putting another grommet in. He said, "He'll be fine if he keeps getting infections. He'll just have a fever and his ear will ooze a bit. Just keep giving him antibiotics".  Ummm..... I don't think so! An ear infection every single month is a bit much for a little one to cope with, not to mention the effect of constant antibiotics on his immune system. I insisted that he get booked in for a second surgery and he reluctantly agreed. I got the impression he thought it was a waste of time. I'm so thankful that the actual Surgeon and staff at the hospital treat Felix so well. At least I know he will be looked after for his surgery!
So adorable!

It still boggles my mind that (some) people's views towards people with Down Syndrome can still be so negative and archaic, especially in the Medical profession. Appointments, like the one with the ENT Specialist, really drum home to me how much we have to be advocates for our children. We have to speak on their behalf to get the treatment they need, and deserve. It's not always easy and, I have to admit, I was close to tears, with frustration, as I had to challenge what the Doctor was saying. I hope that, over time, my resolve will strengthen and I won't hesitate to be Felix's voice.

After Felix's ENT appointment, I had to take him for an Ultrasound to see if he has a hernia. Isaiah (14) and Aaron (12), both had to have surgery for inguinal hernias when they were tiny so, when I saw a bulge in Felix's groin as I changed his nappy, I was pretty certain that's what he had too. He was such a brave boy, as he lay on the bed, having the Sonographer poke and prod at his testicles, and groin, with the Ultrasound machine. He lay perfectly still even though his face said that he was really uncomfortable. I haven't had a follow up appointment with the GP to discuss the results yet, but the Sonographer said that he definitely has a gap in the inguinal wall which doesn't close, and she was able to push his testicles right up and through that gap. She told me what it was called.... a name I can't pronounce, but she explained that it was a similar thing to an inguinal hernia. We should find out soon if he'll need surgery to repair it. 

City walk
The Ultrasound was a very different experience to the ENT appointment. The Sonographer treated Felix beautifully. She kept telling him how good he was being and how he was doing such a good job of laying still.  When the scan was finished, she stuck two stickers onto his shirt, saying how brave he was, and even gave him a bunch of spare ones as well. He signed, 'thank you' and I could tell he thought he was pretty special with his shiny stickers. It really doesn't take much effort to be kind to little ones, and the reward when you see a gorgeous smile, has to be worth it!
Fireman Felix

Felix enjoyed some new experiences, in the city, when we went there for his appointments. He had his first ride on a tram, which he thought was amazing. It was night time, and we were heading into the city with Bekah (20), Joel (18), Mel and little Noah, to get some dinner. He sat near the window, mesmerised by the sights out of the window. There were cars and trucks and buses, and so many lights. I couldn't look away from his face as he took it all in. It was adorable! Later, he sat in a high chair, and devoured the Chinese food we had ordered, trying lots of new things. He particularly liked the smoked duck and the steamed buns, but he even ate some green beans with XO sauce and really enjoyed them. After dinner was finished, he went for a walk with Bekah, stopping to smile and high-five people along the way. He was getting very tired, as it was way past his usual bedtime, but he still managed to share a little bit of gelati with us before we took him home to bed. As soon as he saw the cot, he tucked his monkey and 'ugly' sock cat under his arms, and threw himself into bed. He had just had a very long day!

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