So this morning I have spent another chunk of my time on the phone to various hospitals, schools and clinics trying to chase things up for Thurston. Luckily, Indigo was more than happy sitting next to me pretending to be on the phone to Dad and allowed me to get on with my calls. I got a few things checked off the ever growing to-do list but none of it was straightforward. I really don’t know where people come up with these systems but nothing seems to work as smoothly as you would expect for people who are in charge of such important things.
For the last 2 weeks we have been trying to get a repeat prescription for Thurston’s Melatonin (medicine to help with getting to sleep). The GP is not allowed to prescribe it, presumably to restrict the amount of parents looking for a miracle cure to their sleepless nights!! So we have to get our Paediatric Consultant to prescribe it. Thurston’s consultant retired and he has been with 2 Locums since. They have also both left and so we do not know whose care he is currently under. Luckily the secretary found a consultant who could process the request and the prescription was written. Due to the nature of the medication, the prescription then has to be sent to another hospital, counter signed and the prescription is filled at their pharmacy as our local pharmacy does not dispense it! Inexplicably, in this age of technology, none of this is done via email and so the prescription left our consultant’s office on a Thursday and still hadn’t arrived at the pharmacy by Tuesday via their internal NHS mail. I was completely panic stricken as we literally had 2 more doses left. I finally tracked it down this morning and it will be shipped back over to our local hospital for me to collect tomorrow.
Next I had to organise an appointment to meet with a Play Therapist at Zeke’s school who is going to help him dealing with some of the frustrations he struggles with at home with Thurston. Zeke and Thurston are actually very close in age (they are 22 months apart) but due to Thurston’s developmental delays and the fact that Zeke is a late-August baby and so in year 4 already, they are treated quite differently. They have very similar interests which leads to Thurston seriously destroying Zeke’s Minecraft and Lego creations. Thurston for the main part is not being mean to him, but he thinks they are playing together. Obviously, I can completely empathise with Zeke, it must be intensely irritating to have nothing that can be kept safe. I’m completely at a loss for how to improve the situation, I don’t know whether I should get Zeke his own device to play Minecraft on or if that would just cause more problems?! My dad installed a couple of shelves above Zeke’s top bunk to keep his Lego constructions away from Thurston but as a result of Thurston’s recent physio sessions, he can now climb on to Zeke’s bed and reach the precious shelves, so nothing is safe! Poor Zeke. The least I can do is try to help him to find a way to deal with his frustrations. I’ve accepted that is not my are of expertise and hopefully the Play Therapist will be able to help him out. I rang the Family Liaison Officer from the boys’ school to organise this appointment and said I would see her tomorrow at the Team Around The Family (TAF) meeting, however she said that she hadn’t been invited, so I had to go back to Thurston’s school and have her name put back on the list. I just don’t understand why I always have to chase every tiny thing!!
We recently had a very productive appointment at the Evelina Behavioural Feeding Clinic at Guy’s and St Thomas’s Hospital in London. We decided that taking 4 kids to the appointment was pointless and distracting so Alex took the other 3 for a day out in London while Thurston and I tackled the appointment. The clinic consisted of a Consultant, Dietitian, Occupational Therapist, Feeding Psychologist and Speech Therapist. Before these big appointments, I actually spend an evening ‘revising’ all my facts and working out exactly what I want to get out of the appointments. I’ve learned from years of doing this that preparation is key!! The professionals were incredibly kind and helpful and really knew their stuff. I’m always so grateful when we get to go to a London hospital because we get to speak with the real experts. They had some really basic useful tips to share, for example, Hovis Best of Both bread is enriched with calcium so that’s an easy switch that can really add some goodness to Thurston’s diet. They very kindly said that I was “a breath of fresh air and a shining example to other mothers”. I’ve remembered that word for word as it’s the nicest compliment I’ve ever received and made me feel so much happier about Thurston’s feeding issues and my ‘relaxed’ approach to dealing with them. They are arranging sessions for me to see the Feeding Psychologist to work on the next steps to encouraging Thurston to try new foods and increase his appetite. They were concerned about his thin and pale appearance so we did have to squeeze in some blood tests before we left, which reminds me I need to chase the results!!!
While we were in the appointment, Thurston seriously filled his nappy! It was the worst poop smell and I profusely apologised and they insisted it was fine and that I should wait until they were done to go and change him! Something I’m really struggling with emotionally and practically at the moment is Thurston’s toilet training, or lack of it. When I changed him at the Evelina hospital, the room was equipped with a bed for changing. It really made me think about how disabled children really aren’t catered for at all. Rooms like these are called Care Suites and the only other place I have ever seen one is at Thurston’s school. There are literally no shops/restaurants/cinemas etc that have somewhere for disabled children to be changed. I am quite luckily that Thurston is small and mobile and generally I can make do in a toilet. However, as he gets older it will undoubtably become more difficult and also, it is very undignified. Why should he have to lie on a toilet floor on my cardigan? Shouldn’t he and other disabled children have access to somewhere clean and safe to be changed?
Thurston has also been quite constipated lately and along with his anxieties towards going for a poop, he is having quite a tricky time with it all. Alex came downstairs last week to discover that Thurston had emptied his nappy across the lounge and we had to spot clean 6 areas of the carpet. I’ve been trying so hard recently to improve our neglected rental house and keep it clean & tidy, and Thurston is quite literally shitting all over it. This is the poop of a 6 1/2 year old boy, it is quite different to baby poop, and no one likes to talk about it or hear about it. The school nurses had decided recently that because Thurston had done one wee on the toilet (the Teaching Assistant sat him there, he had no awareness and didn’t ask to go) that he didn’t need to be referred to the Bladder & Bowel Team. Luckily, the Paediatrician disagreed and we are now on the waiting list. It’s such a taboo topic and I hate thinking about it. It breaks my heart to send my child to school in nappies and I really struggle with it.
Apart from all these troubles, Thurston has seriously been making us laugh lately. His humour is very inappropriate and he says the things that the other kids are not allowed to say and they absolutely love him for it!! He went through a phase of yelling the catchphrase “sh*t on it, sh*t on the sh*tting thing”. He went to school yesterday with his eyes shut and told the teachers he was asleep and that they weren’t real “you are all in my nightmare”. He made a little picnic on the floor for his baby sister with some gingerbread men and a head of broccoli. He keeps pointing out my boobs and referring to them as “the twins”. He is such a mischievous kid and he sure knows how adorable he is!