Tuesday, 7 October 2014

The good and the bad

I haven't blogged for while- that is to say I haven't posted for a while. I have however written lots of draft posts, I just haven't pressed "publish" yet.

When I first started this blog, a friend (who is well known for being quite blunt!) said my posts looked like I was trying to find the positive in everything, even though everything sounds really terrible! But now, those who are privy to reading my draft posts, say that most of my posts are a bit depressing, which is partly why I haven't published them.

This brings me to question why I blog. Is it as an outlet for myself? I definitely find it very cathartic. But if I just did it for that, just writing a diary may have same result. Do I blog to make contacts in the Rett/special needs world? Is it to provide information and support to other families going through the same or similar things we are? I guess it is all of the above really.

But I think a balance is needed. I wouldn't want all my posts to be all happy and cheery, going on about how great life is and how well we cope with it all - because that is not even close to the truth. Equally, I don't want all my posts to be moaning and complaining about how difficult everything, as of course there are good times, but there would be no point to this blog if it didn't represent our life- both the positive and negative.

There is no denying we have had an extremely difficult year, and we continue to be challenged by all that Rett Syndrome throws at us (two ambulance trips to hospital in the last two weeks being a good example!) but I think the reason I am writing so many negative draft posts may be more reflective of my state of mind than actual events.

Many good things have happened in the last few months and I think I need to remember that, rather than just feeling completely overwhelmed by everything.

So here is a general update from the last few months - both good and bad!

Jess got a new wheelchair, which is great. While I wasn't really aware of any problems with the old one (apart from the fact she had outgrown it!), this one suits her much better. It provides her with much more postural support, and most importantly, she was able to choose it in pink! It is a Caps 2 wheelchair.

We had a good summer, and while I think we all, Jessica included, were glad to get back to a normal routine, the holidays were good. We had a great balance of seeing friends, and staying with extended family, as well as a family holiday with just the four of us.

This was Jess' favourite view - she loves being surrounded by trees.
We got our new wheelchair-adapted car in September, through the Motability Scheme. This has made such a difference to us. We unfold the ramp, and wheel Jessica's wheelchair in, so she sits next to Anna. No more lifting Jess in and out of the car, and then spending 15 minutes taking the wheelchair apart and lifting it into the boot. Soooo much easier.

Please don't worry about how grumpy Jess looks in these photos. Two minutes previously she was going mad, giggling and dancing to Pharrell's song "Happy"!!

Jess has also started going for overnight stays at the place where she goes for respite care. Although Social Services eventually agreed to pay for one night a month, she wasn't able to go until the staff received training in how to administer the oxygen, in a case she needed it. Now this wasn't as simple as you might think, as the place that Jess goes to for respite is just over the boundary in a different London borough to the one we live in. And nurses and therapists are not allowed to cross local authority boundaries, so it was not clear how this training could be achieved. In the end, it was decided that if the staff from the respite centre could go to Jessica's school and the school nurse would provide the training. But by this point, it was July (we hadn't had any overnight respite care since December 2013) and the schools were breaking up for the holidays, so the training couldn't happen until September.

However, Jess has now had two nights there - and she loved it both times. The staff rang me in the evenings to say she had gone to bed laughing and giggling both nights. This has provided us all with much need breaks, and me with some much needed sleep. I cannot emphasis how much this regular break is needed.

We are moving forward with the very stressful process of getting the house adapted. I will add here that it has only been so stressful due to the dealings we have had with the adaptations department in our local council. We desperately need the adaptations as I am really struggling lifting Jess and carrying her up the stairs now. This process has been going on nearly a year, and eventually I ended up contacting the head of the department as we had completely reached a dead end in the decision making process. Fortunately, he managed to get things moving again, and even advised us to put in a formal complaint once he realised the extent of the problems we have been having. So the builders start next week (which is very exciting) but we are still arguing with the adaptation department about certain things, even at this late stage. Argggghhhh.......

With regards to Jessica's health it has been a good summer. One problem that got worse over the summer holidays was her reflux, especially when she was wearing her rigid brace. In the end, the decision was made to leave the brace off until the reflux is sorted as it was causing her (and everyone else) too much distress and it was too dangerous to risk her aspirating and getting a chest infection. By coincidence, her foot splints were also sent away to be adjusted over the summer, which meant we didn't have to strap Jess into lots of hard plastic during all those hot weeks in August, which was great. For the reflux, Jess was seen at Great Ormond Street last week, and the decision was made to change her gastrostomy to a jejunostomy. The theory behind this is that everything that currently goes through the gastrostomy will enter the gut further down, in the jejunum, and therefore be less likely to come back up again! It will also mean that there is more room in her stomach for everything she does take orally, meaning there will be less pressure in her stomach. I really hope this works and we don't have to look at more drastic solutions like surgery. And while I don't like Jess having to wear the rigid brace, I don't want her to be without proper postural support for too long either, as the longer she can't wear the brace due to the reflux, the more chance there is of her scoliosis deteriorating and her needing major spinal surgery in the future.

On the downside, Jess has had a chest infection (probably due to aspiration) which was the reason for one of the ambulance trips to hospital. She has also started having seizures in the day. Jess has always had odd neurological episodes at night, and was formally diagnosed with seizures last December. Jess was started on Epilim, which was having a good effect. She has had a few serious seizures (including where she stopped breathing, which is why we have oxygen) but they have ALWAYS been at night, when she is asleep. However, the last few weeks she has been having a LOT during the day. We have now got rescue medication (Buccolam) to administer if they don't stop after 5 minutes and we have to make sure this and the oxygen are with Jess at all times. The other day, I was on the bus with Anna, when the school rang to say they had just called an ambulance for Jess, as she had a 4.5 minute seizure and hadn't woken up. Not great. She is having an EEG this week, and an urgent epilepsy appointment so hopefully we will get it all under control soon. I am NOT liking this new development.

So there you go. The good and the bad. And actually writing all this down has made me feel a bit better about still feeling overwhelmed by it all, as actually, most of the good stuff has only happened in the last few weeks (new car, respite, date for the builders starting, decision regarding Jejostomy) so maybe it's a bit soon for me to be jumping for joy about it all. Add in the dispute with the adaptation department, the chest infection and the seizures, it is still a lot going on. Maybe, someday, life will settle down. I may even find it a bit boring if it does. But I can't wait for boring!!!!