Therapy and Doctors

Enjoying the sunshine

Considering it's been a 40 degree (celsius) day today, it's been a busy one for us. This morning, before it got too hot, we decided to pack Felix, and all three of our dogs, into the car and go to the dog park. It was already pretty warm, but it was beautiful to be out in the sunshine. The dogs went crazy, and ran themselves ragged, chasing the balls and each other. Felix though it was great to have a huge, grassy oval, to walk on. He enjoyed throwing a ball to the dogs, and then running after them. It's beautiful to watch him having so much fun.

Later, Felix had an Occupational Therapy appointment. I appreciate that his therapist is able to come to the house, for Felix's session. It makes him feel really comfortable, being in his home environment, and it makes it easier for me too, with one less place to have to take him. Felix was in a funny mood today; he hadn't had a sleep so he was being a bit naughty and showing off. As soon as his therapist arrived, he turned his little activity table upside down, and then tried to tip his table and chairs upside down as well. It's hard to keep a straight face when he gives you a cheeky look and then proceeds to do something he shouldn't. I told him off, and then managed to distract him by asking him to come and draw on his chalkboard.

Chasing the dogs

The therapist is very pleased with Felix's development. She believes that his fine motor skills and his cognitive ability is pretty much on par with other 'typical' kids his age, which is wonderful. His gross motor is more delayed, due a lot to his hypotonia (poor muscle tone). She is hoping to do an assessment, along with a Physiotherapist and a Speech Therapist (if there are any available here, due to a lack of staff), in about a month's time to see where he is at developmentally across the board. I'm not a huge fan of assessments, due to the comparative nature of them, but I am keen to see which areas Felix is more delayed in, so we can focus our time and energy on those things, and less on the things he's doing well in. I think it will help us be able to fine tune his therapy and see what we really need to concentrate on.

Wearing his favourite hat from his Papa

In the afternoon, Felix had to see his Paediatrician. It's been six months since we've seen him, so we had to catch him up with all the latest on Felix, including his ears and possible hernia. We also had to get a referral for him to have his next MRI to check on his hydrocephalus (fluid on the brain). If the levels of fluid have remained steady, since his last scan a year ago, we won't have to worry about another MRI for about five years, which would be awesome. We're hoping for a good result! I just thought I'd mention that hydrocephalus and Down Syndrome are not linked to each other. The hydrocephalus occurred when Felix was still in the womb, totally separate from the fact that he also had an extra chromosome. The Obstetrician and Paediatric Neurosurgeon, as well as the rest of the 'team' who met regarding Felix (when I was pregnant),  had never actually come across another baby with both diagnoses.

The Paediatrician did all the usual measurements today. Felix has only put on 200grams in the past 6 months, and now weighs 9.2kg, at 29 months old. He is 81cm tall which, even on the Down Syndrome height/weight chart, is really tiny. All our other kids were very petite too, so we're not worried. He eats well and sleeps beautifully, so I think that's a good sign. The Paediatrician isn't quite so convinced. When Felix goes for his MRI, he's going to get them to do complete blood work, and test for Coeliac Disease as well. He just wants to eliminate that as a reason why Felix may not be gaining weight. He said that even if those tests come back clear, he would like him to see an Endocrinologist to rule out other possibilities. I'm fairly sure everything will be totally fine and he's just going to be a little guy but, hey, who am I to argue with the Professionals?

Cooling down, at the end of the day,
with his dinosaur

Felix had his ears checked, yet again, by the Paediatrician. He had all sorts of problems trying to get a visual of his eardrums. He could only partly see his left one (and he couldn't see the tube the GP saw last week), but he couldn't see his problem right eardrum at all. He commented that Felix has highly unusual shaped ear canals. He now joins a long list of Doctors and Specialists who have said the same thing. Felix was an absolute trooper, and didn't even flinch with him poking around in there. He's getting quite used to it, I think. We will keep putting the bicarb drops in his right ear until he sees the GP in a couple of days. Hopefully, by then, he will be able to get a good look.