Joseph’s routine
Saturday, June 7th, 2008So while I’m busy messing around swimming, biking, and running, what is Joseph up to? Joseph has a very busy weekly schedule, as does his poor mum who has the job of taking him everywhere.
Joseph needs constant care and physiotherapy. Unlike other children his age, Joseph is not capable of very much physical movement: he can’t sit up, crawl, walk, run, or most importantly, play and entertain himself. This means that he spends a lot of time just laying on his back or sitting in his special chair. In addition, his digestive system doesn’t work very well: firstly, he cannot coordinate chewing and swallowing food and risks getting food in his lungs which is potentially life threatening. Secondly, his digestive system doesn’t work very well as it requires two things Joseph hasn’t got much of: muscular control and gravity (it’s much better to stand up or walk after a meal than to sit down or lie down).
So here’s a break down of all the appointments Joseph regularly has:
- Therapies:
- Physiotherapy: to mobilize his joints and loosen his muscles.
- Psychomotricienne: (we don’t know the English equivalent! Something like psychomotortherapy): this is like physiotherapy but involves stimulating the patient in order to self-mobilize. For example, rather than physically manipulating a child’s head and neck like a physiotherapist, a psychomotricienne will hold up a picture or mirror and move it around the child’s head. The child will naturally look at the mirror or picture and turn their head to follow its movement. Personally, I find this therapy the best because not only does it exercise Joseph physically but also neurally.
- Orthoptist: eye exercises. Our eyes require muscles to move them and to control focusing of the lens. Not only that but the eye must then send back the image signals to the brain. Since Joseph’s communication nerves are not working properly, none of this works properly. To this day, we don’t really know how much he can see. An orthoptist exercises Joseph’s eyes much like the pyschomotricienne exercises his body.
- Ophthalmologist: eye doctor. Checks that the eye is physically developing and functioning properly. Joseph’s eyes seem to be developing perfectly which is good news.
- Speech therapy: in young children this also focuses on chewing and swallowing.
- Pyschology: for all three of us. This doesn’t really work for me so I don’t go, but Colette finds it very helpful. In particular, the psychologist is someone you can just off load to without worrying if you’re boring them. You can also ask them the best approaches to dealing with certain situations. For example, it’s very hard on myself and Colette when we see other children of Joseph’s age doing so many things. Another good example, is how to deal with well-meaning strangers in the street asking about Joseph. This would be fine if it was just the odd person here and there, but when you get asked 10 times within a single visit to the supermarket it can get quite straining.
- Consultations:
- Neurologist: the neurologist generally coordinates all of Joseph’s care as well as doing what neurologists do.
- Gastric specialist: regularly examines Joseph’s stomach and throat to make sure that he is tolerating his tube feeds and that everything is working properly (e.g. make sure that he is not getting too much acid reflux, his stomach isn’t too bloated etc).
- Pediatrician: checks Joseph’s weight, size, and health - also provides us with ongoing prescriptions for Joseph’s drugs (laxatives to help him keep regular as he can’t push, stomach acid tablets as he has a lot of reflux and painkillers for times when he has inexplicable bouts of crying and seems to be in pain).
- Dietician: ensures that Joseph is getting the correct calorie intake and minerals and vitamins.
- Orthopedic doctor: checks that Joseph’s bones and joints are developing properly and makes sure that he has the correct equipment to help his posture and development via corset seats, fittings for Joseph’s bed, bath seats, etc.
- Controls (to check for problems):
- X-Rays: lungs, hips, and spine.
- Blood tests: check nutrient absorption.
- pH stomach analysis: check acidity balance in the stomach.
In general, Joseph sees the physiotherapist and the psychomotricienne once per week each. Then he has usually at least 2 or 3 other appointments. The specialists take care not to overwork Joseph because he becomes tired very quickly and, once he gets tired, he goes into a very rapid decline.
I should add that all this care and support comes courtesy of the French health service which, I must say, has been absolutely amazing. In some respects we are in a difficult situation living a long way from either of our families, but in this respect we couldn’t be in a better place.
While Joseph is taking a quick nap, I thought I’d make my debut input on the blog to give you a quick update on how he’s doing. He’s 20 months old today and just getting over a bout of some horrendous gastric bug. Other than that, he’s in good form and his appetite is coming back as he has started making his little ‘click click’ noises with his tongue which I’ve taken to understand that he is either hungry or wants his dummy. When he spits his dummy back out, I know then that he wants something to eat/drink. His feeding by spoon went by the wayside with his gastric bug but usually, especially since he started the tube feeding at night, as he has more strength and tone, his chewing and swallowing have much improved. He still can’t take very much from the spoon and all his food has to be very smooth (for fear of him choking) and any drink we give him has to be thickened, as fluid goes down too quickly for him to cope with and he could end up aspirating on that too.