A Blog About a Bloke-Living with WHS

Today we went down to the RCH for the first of our two days. It was meant to be 3 days at the RCH, but Ryley managed to get out of his dental appointment on Monday by throwing up everywhere in the car...we had to turn around and come home. One way to get out of it I guess.. This morning he had a renal ultrasound and then an appointment with his neurology team. Awesome news was that he now weighs in at a HUGE 17.3 kgs!! This is almost unbelievable for Ryley who has always been so tiny. 18 months ago, he weighed 10.7kgs at the age of 6 and 1/2 years. The best bit, is that for his weight, he is only a fraction off the normal weight charts for a small 8 year old!! He has basically NEVER been on the normal weight charts (apart from the first couple of months of his life!). Ryley's height is still way off normal charts, but I don't care!! Plus, he can stay on the Ketogenic Diet, which is even better news really. I thought today we were going to start the discussions about weaning...

After reading about Bron's Cooper  this week and his recent decision to go to the toilet, I was a little more inspired to start encouraging Ryley again. We have been running through the toileting motions with Ryley for years now. And we have had some successes here and there. But, it seems, it takes a good dose of healthy competition to give Ryley the motivation he needs to use his potty chair! Braeden is right in the thick of toilet training at the moment. Very much spurred on by his glorious return to daycare this week. By all accounts, being in the 2-3 year old room has given Braeden the extra motivation that he needed to get on that potty and do something! Up until now, we have just been following his lead, which we will continue to do. But he is at the stage of wanting to go to the toilet all the time, and is what has sparked the interest from Ryley. So, to date, Ryley has used his potty chair several times over the past few days! We ask him all the ti...

Remember how I have challenged myself this year to run around the Lake? Well, I started yesterday. Running that is. I managed 500 metres. How bad this that? But I guess I have to start somewhere. David is pushing me and for the last two nights after work we have taken the kids up to the Lake. That in itself is a bit of a challenge seeing as the Toddler likes to walk around himself pushing the stroller and then Ryley cracks the almighty's because we are going so slow! Both the kids love it when we run, but I am no where near fit enough to keep it up for very far. Anyway. It's a start. And now I have started, I can't stop.

Sing along if you know the words... That song has been stuck in my head for the past...3 days...! The boys love it, and I, well, I don't mind it seeing as it is the only song both the boys can do the actions to. The second they hear the song start they jump to their feet and start doing the actions. For most kids, like Braeden for example, it is easy to copy the moves (he can even do the La La La's). For Ryley though, he has been practising it for a very long time (try years, not just days).  He can almost do all the moves. It makes me so proud to see him up there in front of the TV (they are words you don't hear too often) alongside Braeden dancing and moving together. He absolutely loves it. I figured something out the other day too. Well, not exactly figured it out. More like acknowledged it instead of ignoring it. I think part of why I get so cross with Ryley when he does his whingy noise is because I am frustrated. Sometimes I just wish he could express what he wa...

Coffee that is. Ha! I seriously don't know if I could live without the stuff. Does that make me addicted to caffeine? Meh. Probably. I only have 2 cups a day. But I confess. They are always bought ones. From a proper store. Well, McDonald's is probably not a proper store exactly...but they do have good cheap coffee. Today was blood test day for Ryley. I hate blood test day. And it turns out that Ryley REALLY hated blood test day today. Because Ryley is on the Ketogenic Diet, he has to have blood tests every 3 months. This is to check that everything is ok and that his organs are all still working well and not starting to shut down or anything. His last few blood tests now, have shown higher than normal cholesterol which have started to concern his neurologist. If these tests show that they have elevated further, then we start the very real conversation about weaning Ryley off the Diet. I am petrifried to be honest. I dread the thought of Ryley ever going back to having a...

It's easy. I go back to work. David stays home with the kids. Kids behave themselves beautifully. Hmmmm. I am feeling a little miffed at the moment. I mean, when I am home with the kids, I plan outings, I break the day down into activity blocks, I make sure that they get lot's of attention... David, on the other hand, takes a more relaxed attitude. He manages to take them to the bakery for coffee each day and he sits there and reads the paper. But! I protest! Doesn't Ryley get sick of sitting there, and doesn't Braeden start running amok after 5 minutes?? Clearly I am too stupid to realise that if you ply them with all sorts of cakes and sugary sweets at 9:00 in the morning that allows you have 20 mins or so of read the paper time. Which is largely uninterrupted apparently. Well. Ok. What about Ryley's favourite noise? Oh no says David, Ryley doesn't do that noise for me . Seeing as this is David's first time looking after both the boys during schoo...

Ryley giving Braeden his present Awesome! Farm Animals! Wiggles matching game (he had to do them all at once, not one board at a time!)

First of all, I cannot believe you are 2 years old today! Where did that time go? Anyone know? It has gone way too fast! I hope you have had a wonderful day just hanging out with your big brother and your Dad (sorry Mum had to go to work, I wish I didn't have to). I loved that you started saying 'birthday' today. I am pretty sure you knew what it meant..I mean, everyone knows that birthday really means presents! I am very glad that you liked your presents. How exciting! I want you to know that you mean the world to us. We always call you the light of our lives, and this is because you bring such joy and happiness into, what can sometimes be, tough times. Often, I can't believe the things that you can do, or say, because I am just not yet used to having someone copy things after only seeing them one time! The speed that you learn things is unbelievable. It makes me so very very proud to see you loving the world. You are a very kind hearted and gentle soul who just ...

The most bestest thing about being better and not having a throat that feels like it is closed over? Coffee. As in, being able to drink it again.

First post for 2010. It's not going to say much because I have a nearly two year old hanging off my arm trying to bite me. It will say Welcome to a New Year. It will say that my body did finally give up last week and I was bedridden for most of it with tonsillitis. Me and David's one week off together was ruined by me being sick. I guess at least he was home and played with the kids while I lay in bed wondering why I was so sick. I forced myself to see a doctor and got some medicine and am bloody glad I did. I feel a lot better! Lot's to catch up on. I hope I can continue to improve the blog a bit and make it more interesting to read. So, short and sweet. The toddler has moved from trying to bite me to trying to turn the computer off. (Ryley is actually behaving himself and is watching the Wiggles...). Thanks for sticking around while I have had my little blogging holiday.