A Blog About a Bloke-Living with WHS

I finally decided to go and get the boys haircut yesterday. Ryley's was so long, and he has school photos next week, so I thought I better get him tidied up! Braeden's fringe was so long it was always in his eyes and annoying him, so he got it cut as well! I put the picture of Braeden up cracking it, because, well, everyone thinks he is such a well behaved good kid. I just had to prove that he actually isn't!! I am also proud to announce the arrival of Jacob and Linda's baby girl which arrived through the night. They haven't decided on a name yet, but I hope to hear sometime tonight! There is a time difference because they live in Latvia, so when I last spoke to Jacob he was heading off to bed. Very exciting! I have seen some pictures and she is beautiful! My Mum has to go back for more surgery next week because her cancer had started to spread, so please keep her in your thoughts and prayers.

I am feeling so blah at the moment. Which is why I haven't really been motivated to write in here. I start the posts in my head, but then get distracted doing other things. I am exhausted. It is a constant battle trying to juggle everything. Ryley has some very difficult-to-manage behaviours emerging at the moment, and we are trying to manage those. When I tell people his behaviour is bad, they really just don't get it. I guess all they can compare to is their own neurotypical kids who might throw the odd tantrum. But this is nothing like that. By chance I bumped into one of my old clients today and I was chatting to her. Her child has Epilepsy and intellectual disability and she is having the same kinds of trouble as us. The thing is, that when a child with a disability has 'bad' behaviour, it is usually because they are trying to communicate something to us. It could be that there is a sensory overload of some sort, or it could just be implusive and something they ca...

Another week has passed us all by. Another year has passed for others (David's birthday today!). We had a great weekend. Ryley is a lot better and I would say almost 100% again. Braeden is good, runny nose, but that is pretty standard for kids his age. Mum had her lump removed, so now we wait for results (which then determines the next course of action-radiotherapy, chemotherapy or further surgery). We are still waiting on news from Latvia about the arrival of my new neice or nephew. It is nice to have a lull in events for a while. I desperately hope that this week stays uneventful. We really need to get our house finished. The electrician is ready to go to finish everything, but we aren't! I wish domestic blitz would pop in and finish it-while they were here they could also put in an outdoor spa, a outdoor pizza oven etc etc. Or maybe I could just win tattslotto. At least it has been raining today. Good soaking rain too. Yay. Just what my garden needs.

It was brought to my attention just recently (thanks Fiona!) that you had to join up with a google account before you could comment. I have changed the setting now so that anyone can comment. I really have enjoyed the emails and the feedback I have got so far, and want to thank everyone for taking the time to give me the feedback! So don't be shy about commenting! Thanks everyone for reading about my precious Ryley and Braeden! Anna xxx

Don't have much time today, but did want to come in and say that Ryley is most definately on the mend finally! He has managed the last two days at school and actually slept through the night last night! He rarely sleeps through (as in maybe once or twice a year) so we are really happy! Braeden has two of his back molars through now which explains his horrible teething moods. Didn't think he was meant to get molars yet, but hey, who invented 'meant to' anyway? Thinking of Mum tomorrow as she goes in for her surgery. For those reading, please send some positive thoughts!

It's all I seem to hear. Ryley is still sick and I am home again with him. He has just whinged and coughed all day. Even going to take and drop Braeden at daycare was a task and a half. Do you know how hard it is to carry two kids (11.5kgs and 13.5kgs)? I am just so over it. Probably people will think I am a selfish cow for writing that I am over it. Sorry for that. But I don't care. You see, when Ryley is sick, it isn't just about a normal kid who is not feeling well. Just a cough is not worth worrying about. But with Ryley, he also has secondary infections in his PEG site and in his nappy area. He can't breath properly or cough up the mucous he needs to. Due to the fact that he is on the Ketogenic Diet and his body system works differently, it is harder for him to fight these viruses. Add to the mix the increase in seizures because he is tired and feeling crap and you have yourself a kid that should probably be in hospital with IV antibiotics. Just when I think he m...

Thought I might take a minute to write about Braeden, seeing as he is just so gorgeous. He is now 16 months old, which is hard to believe! Ryley is still sick and has stayed home again today from school and this has totally thrown Braeden. This morning Braeden brought out Ryley's schoolbag for me, only to be told that we didn't need it today. Braeden was obviously upset that he would have to 'share' me again, but he tried to make the most of it, even going and laying next to Ryley an cuddling him. So beautiful. Every day we marvel at the things Braeden learns and achieves. It all seems so fast, and we truly think that if we blinked we would miss the amazing things he does. I know that neurotypical kids all develop in this way, but we are used to slow progress, so it makes it so special to be able to really watch Braeden as he learns. The thing with Braeden is that he thinks he is older and bigger than he is (so true of most kids!). I always thought that having a brother...

What a day. I have never had a more challenging day with Ryley. Today I discovered that having a bigger and more mobile child, does not neccessarily equal easier. Our visit with the neurosurgeon went really well. Ryley won't need another MRI for 3 years all going well. His syrinx (pocket of fluid in his spine which has occured as a result of his Arnold Chiari Malformation) has actually improved, which was a wonderful surprise for both me and his Neurosurgeon. So there is less fluid in the pocket and the pocket has gotten smallen as a result of this. This seems to be because Ryley is now walking. It should continue to improve the stronger and bigger Ryley gets. So, unless Ryley starts to go backwards, we shouldn't need to see his neurosurgeon again. We also had a bone density scan and his kidney ultrasound. Both look good, but we will wait for the final reports when we see the Keto team in a months time. What has worn me out has been Ryley and his behaviour. Now that he is able...

Well lucky I get bulk billed at the GP! I was right, Ryley's chesty cough is up high and nothing more terrible than a normal cough that is associated with the flu. We did put him on a precautionary course of antibiotics, only because with Ryley, you never know whether it will turn into something more sinister. Better to err on the side of caution and all that. So he went back to school today and managed to last the day, so he must be feeling better. It is always the way. I always hold out taking him to the doctor and as soon as I do, he starts to get better! We had down to the RCH tomorrow to catch up with his neurosurgeon and have his kidney ultrasound. Hopefully all just routine. Seems like we are forever catching up with medical professionals at the moment. I guess it is all just par for the course, but sometimes it just feels like I see them more than my friends! I know the appointments are important, but it would be nice to not have any for more than a month or so! In some way...

Ryley is sick again. Some kind of flu/cough/virus thingy. I am actually taking him to see his GP, so I am kind of concerned this time. He has a really bad cough, that is up high in his chest, so not in his lungs yet I don't think, but enough for him to have a temperature and be unable to sleep. Poor kid. Between the 4 of us last night, I think we might have managed 3 hours of sleep. Not fun. I try not to take him to the doctor unless he is really sick enough for antibiotics. He needs to be able to fight viruses himself, so I tend to give him a few days to fight it himself before I rush him off to get medication. He has had the cough for about 5 days and it really isn't getting any better, so I figure a check over by his GP is probably a good idea. Braeden is still ok, teething, not sleeping, but still well. He has never been to the doctor. He is nearly 16 months old and still hasn't had an illness where he has had to have anything more than Panadol. He has had coughs and c...

*SIGH* Braeden is cutting about 4 teeth at the moment, with two of his eye teeth just about through. It has been a nightmare. Not only is he waking for comfort feeds every 1/2 hour to 1 hour, but he is so cranky and irritated that he is just lashing out. Today he bit me and hit me so many times I lost count. I finally relented and went down the street and bought some Panadol and so, for the last hour or so he has settled down a bit. He can actually say 'OW' now when he is hurt or not feeling right, so at least I know he is in pain of some sort. Poor kid. Ryley is so tired too after a big week at school he is just having seizure after seizure. And David picked tonight to get a haircut which meant he was ever-so-late home. I am hoping that Braeden settles down after tea (and more Panadol) and goes to sleep. So I can hopefully eat my pizza in peace and find some mind numbingly boring program on tv to watch. With a bit of luck, my night might actually include sleep at some point.

The past few days have left me pondering life and how much of what happens is pre-determined. Many moons ago, most people would have turned straight to religion to help them figure out why something has happened. They would have sought out answers from the God they believed in, and this would have somehow bought comfort in their time of need. Today things are a bit different. Many people do still turn to religion to try and search for meaning. But largely, we are a faithless society; religiously speaking anyway. So where do people turn when things don't go how they expected? I am a catholic, although I probably wouldn't describe myself as a practising catholic. Perhaps it might be better just to say I am a non-traditional catholic, seeing as I do pray and do have a very deep and real connection with God. Having a child with a disability often prompts people to suggest that I am a "special person" and that "God" only gives "special people" children ...

I bought Ryley a new top on the weekend. It was a size 4. When I put it on this morning, it was a bit too small. I couldn't believe it! I am guessing that it is just a very small size 4, but all of a sudden I have found that I have a growing boy. For all of his life Ryley has been classed as FTT (Failure To Thrive). At first, it was because no one could explain why he wasn't growing, then it became a label that was listed under the comorbitities of his syndrome. Now I am beginning to wonder if he might actually lose that label one of these days. One of the main characteristics of Wolf-Hirschhorn Syndrome is slow growth or, as it is usually referred to, FTT. It is actually incorrect of doctors to refer to kids/adults with WHS as FTT. It is far more useful to use the terms 'slow growth' and 'short stature'. And here I am again talking about the use, or rather misuse, of words....! There is a growth curve chart that is specifically for children with WHS, although ...

What a weekend! Saturday I always try and put a couple of hours aside for "Ryley and Mum" time. Usually we just go shopping for stuff, or just browsing the shops, and this Saturday was no different. Except first we went and played at the park! Ryley is so good at climbing up the steps and then going down the slide! He literally tries to run from one side of the park to the other! Honestly never thought we would see that day! On Sunday we all took a family drive to Ararat and had a picnic at the park, fed the seagulls and ducks, and then both the boys had a big run around the park and on the play equipment! We headed back out to Amphi on the way home and dropped in to see Nanna and Poppa again. David got the four wheeler out and Ryley and Braeden had an absolute ball "hooning" around. Even I braved it and hopped on the back, but I wouldn't let David go out of first gear!! (There is a long story to why I am so scared of motorbikes...some people know it already, b...

I took these photos yesterday. I thought I would just put them up because they are cute. No other reason.