A Blog About a Bloke-Living with WHS

Well another year is nearly over. Both my boys have grown (including Ryley!!) I have returned to work. Our renovations are still not finished. My house is still a mess. There are toys everywhere. I still keep piling the boys new clothes into their drawers without removing the stuff that doesn't fit them. Ryley is still on the Ketogenic Diet, though may come off it next year (gasp!) He started walking this year! He loves school so much that he would rather live there than here! Braeden has all of a sudden become a toddler (when did that happen?). He can tell us what he wants using a combination of words and signs, and he chatters away to anyone who will listen. He is a very kind and sensitive soul, who has reminded us to smile. Who knows what 2010 will bring for us. Plenty of challenges. I am certain of that. In fact, there is no escaping that. That is just the reality of our lives. So I have a few goals.. 1. To try and be more patient. Most people who may look f...

In that order. Ryley decided today was a good day to do his whingy noise AND have heaps of seizures. I truly thought it was going to be the worst day yet. BUT. I have a timetable. It is only a very rough one. But it sure does conquer that noise ! I think what Ryley really misses is his routines. Plus the fact that there is always something for him to do at school, or at the very least, school is noisy and full of action. Home is just so boring and dull compared to that. So I really need to try and create some new routines, as well as throw in some structured (and non-structured) activities. Today, we managed to do some painting, play on the swings, play on the trampoline, watch some TV (PlaySchool and Wiggles) and...the highlight...go for a swim! Ryley was so incredibly happy to be in the swimming pool. He loves his floating ring, and he tries to swim, float, jump, and basically he didn't stop laughing the whole time! And the best bit of him being in the pool...no seizur...

The whinging that is. Ryley is bored. He is sick of the trampoline. He is sick of the swings. He is sick of his climbing frame. He is sick of the Wiggles and PlaySchool. He is sick of his cricket set, puzzles and paint. "Is it time to go back to school yet?" We have 5 weeks to go. It is doing my head in. Braeden refuses to have daysleeps, and spends half the night up feeding as a result (he is overtired and trying to calm himself, but even the BF isn't working). And Ryley spends the day doing THAT NOISE . Seriously. I am going to have to draw up a timetable I think with planned activities. I will have to be specific. I will have to allocate time for certain things... I guess I am just one of 'those' mothers. You know, the ones who dread school holidays. You know, those terrible, horrible, heartless mothers who don't want to spend time with their children.  Yep, that's me. Actually, I am one of those mothers who desperately wishes her nearly...

We had a lovely Christmas Day this year! The boys liked their presents and we had a fun day out at David's parents house. So here is a few snapshots from the day!

I just want to wish everyone a very Merry Christmas! I hope that you all enjoy your day and that Santa comes to visit tonight!! Both Ryley and Braeden are fast asleep after warnings from me that if they don't sleep all night then Santa won't visit. Ryley was listening and I know he will sleep all night now. Braeden....well...he will try I am sure! I usually like to make a few christmas wishes and this year is no different. So here are my wishes: For Ryley: * That Ryley can continue to grow and be healthy * That Ryley can maintain his current amount of seizures (less would be even better). * I wish that we can get Ryley the communication tools he needs to help him get his point across! * I wish that Ryley can continue to enjoy his life and can experience as many wonderful things as possible! For Braeden: * I wish that Braeden can continue to thrive and grow. * I hope that he can continue to enjoy his life. * I hope he stays as healthy as he always has been (nearly ...

How do you hope to spend Christmas? I hope that my kids wake up Christmas Day, filled with excitement and in awe of the presents that Santa has left for them. I hope they start tearing them open and shout out each time they find something new. Of course, it will only be Braeden doing the talking, Ryley will more than likely just enjoy tearing the paper into tiny tiny pieces, every now and then he will squeal when he sees something he likes! We will then have a special breakfast. Just us. Together. Enjoying the new things. I absolutely love our Christmas mornings. The flurry of unwrapping presents, followed by the slow exploration that follows as the kids try out their new things (we help Ryley with his). After our morning together we will head out to David's parents house. We try and alternate between families for Christmas Day now, because it chews up the whole day if we have to travel half way around Victoria. The kids love playing with their cousins. Tomorrow (Christ...

After lots of stressing and me feeling sick because I was so worried, the Ketocal is finally here! I just got a phone call from our pharmacist to let us know that the delivery has made it to them!! I am so relieved I could cry. Now, I can finally start to organise myself for christmas, because, to be honest, I have been so stressed about this damn Ketocal that I lost the christmas spirit a bit.

So the Ketocal delivery to Australia has been held up. I am so shocked by this...no really...can't you tell? Apparently there is some emergency stock somewhere that the dietician and representative from Nutricia are trying to get. Ryley is listed as needing it critically, but you know, that only really means he will get whatever supplies they can find first. The dietician said that if worst came to worst we can do Ketogenic PEG feeds another way. She said it is hard work, but we can definitely do it. Oh joy. I do trust our dietician though. I know that she is doing everything humanely possible to get it sorted for us. Not only is she giving me updates as soon as she knows something, she is also in contact with our local pharmacy (who have also been wonderful) and is breathing very heavily down the neck of the Nutricia representative (who is also desperate to get it sorted). Our Judy is not one you mess with. So, I wait with baited breath for our next update. Another story f...

Let me see. No Ketocal in Australia until possibly tonight. It then has to be cleared at customs and then distributed to Melbourne. Ryley will run out on Wednesday. I *may* get some by Christmas Day. Oh phew. Only 2-3 days with no food then. Well, Ryley can starve, that's ok. Actually, no. It's not really ok. Considering the Ketocal formula is Ryley's only food source, we kind of need it. We have managed to get 2 tins from another Mum here in Ballarat. That will only take us up to Wednesday night. Thank goodness she could spare some. I am fairly sure she can spare some more if we are desperate, but I really hope we don't get any more desperate than we already are to be honest (a million thanks to Fiona!!). It is not really good enough though. Not only do I have that to worry about and follow up with phone calls, I am also still waiting for Ryley's new Mic-Key button and giving sets. Which should have been here..oh..nearly a week ago. More phone calls to m...

It's funny how at this time of the year you start to reflect on the year the was. I start to think about my goals for next year (in all facets of my life) and consider if I have reached any of the things I had hoped to achieve. After re-reading my 'Hello Little Man' piece, I think back to how long ago I wrote that. Over 5 years ago! So much has happened since then, yet I feel like I could have written that yesterday and it would have still rung true for me. Are the issues I face still the same? Yes. Pretty much. But there are many many new issues as well. For example, I still get frustrated that people think using the word 'retard' is ok. It is not. End of story. It is hurtful. I know most people in this world don't get that it is hurtful and come up with all sort's of excuses as to why it is ok for them to use. At the end of the day, it is hurtful still. I don't want people in my life that think it is ok to use that word. I figure if people can't...

I have been meaning to do this for a while now, and I finally have a few minutes to myself while Braeden is watching Iggle Piggle (I hate ITNG, but hey, if it keeps him out of my hair for 5 mins, I will take it!). I want to share with you some of my favourite blogs at the moment. I say 'at the moment' because, some of my fave bloggers aren't posting right now, so they will get a mention another time! These blogs are ones that inspire me, that make me laugh, cry, and want to keep blogging. So here they are, in no particular order: Sharalyn, has two blogs: Here  and this one  She has a son with Autism whom she homeschools. What inspires me about Sharalyn is how she views Autism and the things she teaches J. I love reading her blog because she shares the same ideals as me when it comes to having a person with a disability in your life. Melissa, is only new to this blogging world, but I just love reading about her daughter Ellie   Ellie has WHS like Ryley, and Mel is ...

Because I don't have much time at the moment to write, I will just put a few pictures up. Every year I attempt to take christmas photos, and every year they end up the same..as in..they never really work out too well. See what you think...!! These next two were taken at Braeden's daycare christmas party:

Seems like ages since I have been on here! I am still not that well, but feeling better. This week has been incredibly busy. Ryley's school concert went very well. Ryley enjoyed himself and of course we were bursting with pride. Braeden particularly like the little girls performing their ballet act. He clapped so hard he nearly fell off David's knee. Bit had to get photos because we were too far away from the stage. We got it all on video though! It is absolutely freezing here at the moment. It is meant to be summer and instead the temperature is the same as what it is in winter. Crazy. I will write a longer post when I get a chance. In between working late, school concerts, work breakups and late night shopping, I have no time for anything. Probably why I can't shake this flu virus.

I just want to thank you to all of those who have commented, emailed me or responded on Facebook to my 100th post. It really encourages me to keep writing. It is an honour to have people take the time to come and read about my little family and the things we face. So thankyou to my loyal readers, and hello to any new ones... I will be back to post something when I feel a bit better. I have the flu at the moment and I am not a happy camper. Not to mention the fact that this is the busiest week of the year (well it feels like it anyway). We had two appointments for Ryley today, one with his school to set goals for next year. I will write about it later. I also have some lovely christmas photos to share from our various christmas parties on Saturday. I will be back. As soon as I feel a bit better.

I wanted to do a really special post for my 100th post on this blog. Many of you know that we did have another blog, but it got lost in cyber world (we have been able to retrieve some of it). I wanted to share with everyone some photos that people may never have seen before of our Ryley. I also wrote the piece "Hello Little Man" when he was 2 and 1/2 years old. I still get a little teary when I read it, because the emotions I was expressing were so raw. I think you will see what I mean... So first, some photos: Feeding Ryley some of my expressed colostrum. He is 1 day old. The day we got home from hospital. One of my favourite photos ever. I am smiling, but I had just struggled to feed Ryley my expressed milk. Ryley, aged 4 months old, after his first operation. It was a lensectomy. This breaks my heart everytime I see it. He is so very sad. Happy 1st Birthday Ryley Happy 2nd Birthday to my little man! Learning to walk. 19 months old in both these...

Let us celebrate those who have a disability. Let us acknowledge that they are People First. Let us strive for acceptance and understanding. May we recognise abilities, and not focus on what people can't do. I love someone with Wolf-Hirschhorn Syndrome.

Finally it is time to put the christmas tree and decorations up!! Although we won't be getting our tree until Thursday, at least we can put the decorations up! I can't wait to make some yummy christmas treats, and to put the lights up. We have already been giving the Wiggly Christmas DVD a workout! I love creating the christmas magic for the boys. Ryley loves the song 'Jingle Bells' and both the boys love dancing to 'Go Santa Go'. The first thing they did when they got up this morning was put their santa hats on!!So very cute. Not that we forget about the true meaning of christmas either and do have a nativity scene and we talk often about why we actually celebrate christmas. So stay tuned for some festive photos... And stay tuned for my 100th post. It is going to be a special one.

My christmas shopping experience wasn't as awful as I was expecting. Perhaps because I ran into people that I knew, so it was nice to talk to them. I managed to buy quite a few presents, though didn't quite get it all done. Our christmas party celebrations start this weekend and I must admit I am very much looking forward to getting our tree up tomorrow and decorating the house. I pulled the box of christmas stuff out of the cupboard and Braeden got straight in and pulled out lights and tinsel. Our party fun kicks off this weekend with two parties, the SMB Children's Centre party (Braeden's daycare centre) and then our traditional one with the Wheelers and Kricaks. I think the kids will be well and truly worn out!! We are going to make some decorations this year, so stay tuned for some pictures of our creations!!

Really. What are you doing this weekend? I plan to be up and out the door, at the shops by, say, 9:01am. I know I will be up early. That is a given. The boys have an appointment for a haircut at 9:00am. David takes them for that. This will be Braeden's first proper haircut. I have one day to do ALL of my christmas shopping. Yes, you heard me. ONE day. So by 9:11am, I will probably be over it. Crowds annoy me. People at christmas shopping time annoy me. It's like everyone suddenly becomes even ruder than ever. They become impatient, they are angry, and they will knock you over a hundred times to get to the last 'must have' item. I hate it. I lose my patience very quickly. I snarl at people who look like they are going to annoy me. I pre-empt my snarl by a sarcastic smile, or I look 'em straight in the eye and dare them to stand in my way. I hate how people stand in the way, chatting to each other as if oblivious to the rest of the mad sea of people who a...

For those that know Ryley and have been reading my blog, you will know that I have mentioned in a few posts lately about THAT noise that Ryley does. It is this whiney, grizzly, highpitched noise that he does when he is bored, annoyed or just trying to say " Muuuuuummmmmmm why are there no cars for me to watch? " (to which I normally reply: " because Mum can't control how many cars come down the street Ryley, if I could, I would "). Today, I had enough. He started the noise from the minute the bus left. I sat him at the front door so he could watch the cars and people in the street. He did the noise because there wasn't enough cars. I put one of the music channels on so him and his brother could dance. He did the noise. I gave him a drink and put Playschool on. He did the noise. Meanwhile, I was trying to express breastmilk for Braeden to take to childcare tomorrow, and Braeden was climbing up on me trying to feed at the same time. So. I shouted STO...

This weekend marked the beginning of two weeks of shearing out at David's parents house. We haven't been for the last couple of years because we have either been busy or just haven't been needed. The boys had an absolute ball! Ryley was very content and happy sitting watching the sheep get shorn, he loved the noise and busy-ness of everything. Braeden was trying so hard to help out. He will be a good rousie next year I reckon. He watched the shearing so carefully too. I bet he will love to have a go one day.

Poor Ryley. He was so sad tonight. He wanted to help me fill up a pot of water, and as he was climbing up on the chair he slipped and he fell down. I missed catching him because I was completely distracted by Braeden who was sitting on the toilet and tearing toilet paper up. Ryley was just completely devastated by the fact that he fell. He sobbed his little heart out. So did I. Sobbed with him. I asked if he was frustrated that his body didn't work for him and he looked deep in my eyes and I knew the answer. I know he watches Braeden do all these amazing things. He tries desperately to get his body to do the same things. He gets so angry with me for not helping him and for not always understanding what he wants. Why can't I make things ok?

Grumpy Ryley. Braeden thinks spilling his water is a crack up.

Today Ballarat declared it was a public holiday for the Ballarat Cup. So our household has had a day off. Now, I was really looking forward to this because I thought it would be fun for us to just hang out and relax together. I started the day by making pancakes for brekky and it all went downhill from there... Ryley was bored. Braeden spent most of the time in the strawberry patch picking all the unripe strawberries. Ryley did his 'silly' noise for basically the whole day, which meant I had to walk away from him several times before I lost it with him. Even David who is the most patient person in the world got cross with him for his 'silly' noise. Braeden pulled his chair EVERYWHERE so he could get into things he shouldn't...like knives for example. AAAAAAARGH!!!!!!!!!! Thank God it is back to school/daycare/work tomorrow. It sure is going to be a loooooong summer judging by todays grizzly grump behaviour.

Sleep is something that isn't done to well in this household. Ryley has to have medication to help him sleep, and even with that, he wakes at least 3-4 times a night for a drink and a resettle. Braeden...well he has NEVER slept through the night, and his latest trick is to wake through the night screaming and refuse a BF, drink of water and even cuddles. Add to that the fact that both the kids think that first light means it's time to get up (5:20am in the morning), and it makes for a very grumpy, sleep deprived Mumma. Sometimes I wonder if people understand the exhaustion I feel every day. I manage it with a cup or two of strong coffee, but I know it is starting to affect me and I wonder how long it will take for others to notice. Most people wouldn't realise that I am still BFing Braeden at least every 2 hours through the night. It takes me and hour and half to get him to sleep most nights and then he is up again 2 hours later! So why do I do it? Why not just let h...

I have this 'thing' about birthday parties. I have never been very good at going to them. I find I always have to 'explain' Ryley and why he is so small. Today was different though. Admittedly, I was a little nervous. I mean, I knew the beautiful birthday boy and his equally special Mum (you can meet them here ), but I didn't know anyone else that was going to be there. I guess I was a little bit anxious about having to explain Ryley. What I should have known, was that anyone who already loves someone with WHS isn't going to look twice at Ryley and expect an explanation. We met such a lovely bunch of people! So friendly, and such gorgeous kids. We had a lovely relaxing time and for the first time ever, I didn't feel like I had to explain Ryley. I didn't have to pretend to ignore the curious looks as we did a PEG feed or as we helped him do something. I should have known. So thanks Liv and Elliott for a great afternoon with great food and great co...

I am very much humbled by this . I think that it is a wonderful idea, and look forward to passing on the blog love. I am very inspired by the blogs that I read and I think it is wonderful to know that the words that I write help make a difference for someone, somewhere along the line. So, Melissa, thankyou.

Wearing a hat (although Ryley is still working on keeping it on longer): Sometimes wearing a winter hat over your head is better though: Playing in water is lot's of fun: And pretending to do the dishes is EVEN more fun: We are very lucky at the moment to have such warm weather. It isn't too hot, although after a while we need to be in the shade and reapply that sunscreen. Braeden loves wearing a hat and usually puts one on as soon as he wakes up. Ryley, on the other hand, keeps his on briefly then throws it off when we aren't looking. He does have nice olive skin so I usually just pile on lots of sunscreen and keep him in the shade as much as possible. One day I am certain he will just decide he wants to wear a hat...well I can hope anyway!!!

Ok, so I have decided to do something I wouldn't usually do, and just for fun answer one of these questionnaire things. I stole it from Melissa , who I think stole it from other blogs. Apparently you are meant to answer with one word. Not sure I can do that, but I will give it a red hot go.. 1.Where is your mobile phone? Out on the kitchen bench 2.Your hair? In a stupid boring same-as-always pony tail then kind of looped back over. I desperately need to go see my hairdresser. In fact, she was asking David the other day when he got his hair cut, when I was coming in because "her roots must be soooo bad by now". Um. Yeah. They are. 3.Your mother? Busy. Recovering from breast cancer. 4.Your father? At work. Or overseas. Somewhere doing his philosophical best to change the world. 5.Your favorite food? Mum's tomato pork casserole thingy. Chicken Parma. 6.Your dream last night? That my sister was getting a divorce. That I was buying a house-AGAIN. I dream ...

If anyone wants to follow David, here is the link: David at Movember Men's depression is something that is rarely talked about, but there is an ever increasing incidence of men who are being treated for some kind of depressive illness. You can donate online and read more about the cause. It is great to see that there is something being done to raise the profile of men's health and the importance of talking about health issues!

Here are a couple of pictures of the boys taken yesterday. Ryley is pulling his 'funny face' and Braeden is making sure his mate Keto Meerkat is in the picture! We have finally had some heat here in our part of Australia so it has been quite a shock to the system! Braeden actually has a pair of jocks on over his nappy (which you can't see) because he has decided he wants to start going to the toilet. I think we are a loooong way off him being toilet trained, but hey if he thinks he is ready himself, then he must be getting close to it...??!! Ryley seems very keen to give the toileting thing a try too, so we are going to attempt to train him too. We figure that if he sees his brother doing it, he might be more inclined to try himself. Ryley has had some pretty nasty seizures this weekend and spent a fair amount of time feeling crap. He seemed very happy this morning though as he went off to school, despite having been up since 5:30am. I hope the warm weather sticks arou...

Stay tuned! David is participating in Movember this year. He is going to try and rope some mates in, but even if he can't, he is still going to do it. He has had facial hair for about 6 years so it is going to be very unusual seeing him all clean shaven to start off with. Then he will grow a funky cool 'mo. Hope the kids recognise him..!! Edited to add: Movember is a month dedicated to raising funds for research into Prostate Cancer. The idea is that blokes grow a cool moustache and see if they can people to throw a few dollars their way to support them!

I think these are all pretty self-explantory!

It sure can be frustrating when you are learning to ride a bike. Braeden is expressing himself in true toddler fashion. Luckily, he has a big brother to help him!