A Blog About a Bloke-Living with WHS

Did anyone notice that I forgot to post TMAT? Oops. Haven't been on the computer much lately, so am way behind on both blogging and blog reading. I finally have a few minutes to myself, so will write my final post for the year. The last couple of weeks have truly been a whirlwind. We didn't really get a chance to recover from our stint in hospital before it was christmas and suddenly we had two parties at our place (Christmas Eve and Christmas Day). Then it was down to Melbourne Boxing Day for another celebration. By this stage, Ryley was absolutely stuffed. So were we.  But Ryley really was starting to struggle, so we spent the next two days at home doing nothing. In fact, the day after boxing day we didn't get out of our pajamas. Ryley is doing ok. Not great. But ok. One day he seems he ok, then the next he is totally wiped out. Like today. He is coughing and having a million seizures and just seems really crap. It is going to be 40 degrees celcius today which is VE...

I really just don't seem to have the energy to write at the moment. Ryley is home from hospital. He came home on Monday. He still isn't well, but we are very capable of caring for him at home, so now that his Sats are in the 90's we are confident enough to bring him home (they even got to 100 at one stage before we brought him home woohoo!) Plus he was starting to get bored, which is the sign to us that he is feeling better. This hospital visit was pretty scary. He hasn't been this sick ever I don't think. He hasn't had pneumonia since he was 3 years old. That alone scares me. This time, he just about stopped breathing which meant that the doctors had to give him prednisolone (steroids) which meant that it compromised the Ketogenic Diet, which then meant he could have had a massive seizure (because prednisolone sends blood sugars soaring). There was nothing we could do because it was a life threatening situation. We had to take the risk of him having a big se...

Just a brief update for those who aren't on my FB or know me in real life. Ryley has been in hospital since Wednesday night with viral pneumonia and asthma on top of that. After 3 very scary nights, we finally think he is starting to improve a little bit. We are hoping he will be out within in the next few days. I will post a proper post when I get time, but wanted to also say a HUGE THANKYOU to everyone who has messaged us, posted on FB, visited, prayed or offered help. It truly means more than you will ever know. This has been a very tough time for us and we are all exhausted (Braeden is particuarly upset and sad by everything). Ryley is a fighter. That is one thing we are sure of.

Yesterday Ryley brought his school report home, and then I had a meeting with his teacher last night. To say I am proud, really doesn't quite convey how I feel. Ryley's determination in life is something to be marvelled at. That kid seriously never gives up. He has had a fantastic year, despite the illnesses, the operation, and having to battle with daily seizures and constant pain. The stand out thing for us is the way he has grown in confidence. He is trying new things all the time, and not giving up as soon as it is too hard. He does tire very easily particularly when it comes to fine motor tasks, but that is because he has the most seizures when he is concentrating on making his hands work. We are looking forward to next year, because the sky is the limit for Ryley. We are realistic in our expectations, but know that Ryley enjoys being challenged. This time last year and we didn't ever in our wildest dreams expect that Ryley would be walking independently around h...

Here we are at Thursday again. Haven't been many posts between Thursdays now has there? I have been waaay too busy, and without the thought of breaking a NaBloPoMo promise, I just haven't been motivated to turn that computer on at night. Anyhoo. It is TMAT. So what should I write about today? Seeing as it is Christmas soon (did anyone forget that??), I think I will write out MY letter to Santa. It goes a bit like this: Dear Santa, First of all, I have been pretty good this year, so you really need to bring me what I want, ok? I have quite a few things that I want, and I don't think I am asking too much. First of all, I would like a million dollars. (That's really not that unreasonable). For Ryley:  I would like all of Ryley's seizures to disappear please. We are now on a ratio of 3:1 on the Ketogenic Diet and don't have quite as much room to play with that as before. So can ya help him grow a bit more and those seizures to just go bury themselv...

You know it's going to be an interesting day when the first thing you hear is "Awake Mum?" at 6am. No I am NOT awake thankyou. No matter how hard I tried, I just couldn't pretend I was asleep. Which was probably something to do with the fact that Braeden was jumping on my head telling me to "Awake Mum, Awake Mum". Ryley, upon hearing that the household was up, thought it best if he got up too. I encouraged him to snuggle in with me in the faint hope that he would fall back asleep (Braeden was playing with his toys by now after giving up on me), but no, this wasn't to be. As I was lifting Ryley up on the bed, I thought his belly felt very smooth. It took me but a second to realise that OH MY GOODNESS, the Mic-key button wasn't in his tummy. Oh good. As I pulled up his top I could see that the button had been out for a while because the hole had started to close over. FUCK!! Somehow, while causing Ryley huge amounts of pain and discomfort, I...

I recently got asked this question through the Formspring link to the right. Here is the answer! Does your son walk and does he use the bathroom on his own or wear pullups? Thank you for the question! Ryley does walk, and has been walking independently now for nearly 2 years. He started walking with assistance when he was quite young, but because of his size and low muscle tone he would tire very quickly and always needed assistance. He still gets tired now, but can walk for longer! Ryley is in nappies (or diapers for those outside the US) all the time. We do have a special toilet for him so that he can sit on it easily. He has used the toilet quite a few times over the years, but he can't communicate when he needs to go yet, so we are working on helping him make that connection at the moment. While he is on long holidays over summer, we are going to try again with the toileting. I don't expect him to ever not need a nappy or pullup, but we will keep working on it, becau...