I have now moved up in the world - from smoothie ignoramus, to the more experienced level of smoothie experimenter. A truly modern mum. Frozen berries, protein shakes, essences and nuts fill my kitchen for the elaborate creation of a nutritious smooth meal.
Elise is generally feeling much better. I say that hesitantly because we had one week out of hospital that was great - she was able to function, go to school part-time and managed some homework. Then Elise hit the panic button - her bladder botox was failing way too early and within a few days she felt she couldn't leave the house. :-( That is me with a very sad face. This was not good, a full bladder botox (to relax the bladder so it doesn't spasm every few seconds) is meant to last 6-12 months. After 4 or so weeks it started failing, we don't know why. Maybe the muscles adjusted to the medicine.
One of the main problems is that as the bladder twitches, it develops like a "grand mal" spasm...it triggers off painful big spasms all down the legs, the back and arms - something the Urologist has never seen. Clearly damage to the spinal cord is so extensive around the lower back it, that the bladder nerves feed into it, triggering all the area to become painful, irritated and go berserk. Elise becomes very distressed, in pain and doesn't cope - not surprising. So another urgent text to the Urology department, another drop-in meeting with the Urologist, who is the loveliest man, a few jokes and another medication. So that is two more medications this month :-( that is another sad face from me.
Fortunately, the new med kicked in quickly and Elise has calmed down, thankfully... as it is very stressful for the whole family. The new med is mirabegron (Betmiga). Funny how things creep up on you, she now has 4 medications for her bladder. Since then, it has been easier at home.
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| Hot chocolate with dad at a "happening" cafe - Stuart of course is a "happening" kind of dad |
Recent events in the last 3 weeks
- a week at the horse centre to complete her 40 hours practical horse experience (for her distance education subject of Equine studies). This meant in real terms, office work as Elise can't muck out a stable.
- a DEXTA scan - bone mineralisation scan which needs to be done every 2 years to check for osteoporosis. No results yet.
- youth (15+) chronic illness camp - a 3 day camp at Mt Evelyn run by the Royal Children's Hospital, with a medical team. Turned out to be good and Elise plans to go again. Elise was the youngest there but noticed that as many of the teens were sick and not growing properly, she couldn't tell. A "nice" bonus.
- first parents only weekend away for a break, thanks to Annie looking after the kids
- Elise's 16th birthday
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| Birthday get-together |
I am slowly wading through an inch thick of paperwork for applications, 16 is the magic number apparently for government funding. Hopefully, Elise will get basic financial support in case she can't work more than 15 hours in a week (legislation), which is likely to be the case. Funding is now very difficult to get so I am doing my homework. What will be, will be - so I am not worrying about it and leaving all in God's hands (except the paperwork).
School starts again tomorrow after term break, Elise starts her "first day" on Tuesday with a gastroenterology appointment. I am relieved about that as this week or so she hasn't been eating much again and not much is coming out the other end. At a guess, food is stuck half way and isn't moving down. 4 days of strong laxatives may help (no change yet) but it is an ongoing problem. Paraplegia is complicated.
