A Blog About a Bloke-Living with WHS

Today I pulled some strings and got Ryley seen by the dentist that comes to my work. This dentist travels up from the RCH Melbourne to see kids in our EI program, and I happened to request (ok, beg a little) for Ryley to be seen. This dentist is by far the most awesome dentist I have ever come across. He is so very patient and somehow manages to get kids to open their mouth. Although today, Ryley cottoned on pretty quick that it wasn't all fun and games and clamped his teeth down on the little mirror thingy very very quickly. The dentist did manage to look at Ryley's teeth though, and it wasn't exactly great news. Ryley's back molars have basically eroded away due to the grinding and the medications. His 6 year old molars haven't even come through yet. He will need those teeth removed. Though the good news was that it wouldn't be causing him any pain at all which is a huge relief. The front teeth will need to come out too because they have a higher risk of in...

So I have wonky DNA. Crappy chromosomes. A Balanced Translocation. So does Braeden now. I passed my crappy chromsomes onto him. And don't forget Ryley, he sure did get the raw end of the deal. For those that don't know too much about chromosomes, here is a lesson for you. I will call it...Crappy Chromosome Arrangements 101. We all have 46 chromosomes. Or two pairs of 23. One long arm (q) and one short arm (p). And we inherit one of each of these pairs from our mother and our father. You should have all learnt this in science in Year 7-remember-school..!? All of these chromosomes are numbered from 1 to 23, with 1 being the biggest chromosome with the largest amount of genetic material. WHS affects chromosome 4. To be more specific, it affects the short arm (p). To be even more specific, to have a diagnosis of WHS, there needs to be a deletion in a critical region on that short arm-on the band 16.3. WHS is often referred to as being only a part of a spectrum of disor...

The Toddler. Don't you dare look at him. If you take his Meerkat, it better be for a damn good reason. NO. Nooooo. No No No. Oh No. Uh-oh. Luckily he knows where to hide. The Toddler. Loves to laugh. To show off. Has a great sense of humour. Likes to make everyone else happy, because, well, life is good. Favourite food: Breastmilk. Sleep? Only if absolutely neccessary. The Toddler. Loves his brother even when he gives squishy cuddles. Loves to help anyone who needs it. Knows when to snuggle. Gives the best kisses. Is the light of our lives.

This is a photo of Ryley and one of his best mates Zoe. They are such great friends. They have grown up together and have had lots of fun times. Zoe is a very special and beautiful little girl. We are lucky to have all the Wheelers in our lives!

I have a very excited household of boys today although Ryley is giving me the death stare in this picture and Braeden is happily eating the red streamers! Ryley is still feeling quite tired, but can't wait for Zoe to come over. In fact he has been pretty well behaved because he knows Zoe is coming! Looking forward to a fun day!

Good News is that Ryley's chest x-ray came back all clear!! YAY!! So we haven't got antibiotics...yet! He vomited again last night from coughing so much and he is still fairly miserable today, but at least we know with rest, fluids and cuddles (and playschool) he will be fine! Maybe it would help if we had some weather that was more than 10 degrees. Think it might have to be a PJ day today seeing as neither of the boys want to get dressed.

I had been so looking forward to today and tomorrow. Ryley is on school holidays and I have taken two days off to spend with him and only him. Braeden is at daycare and I had all these lovely things planned for us to do together. Only problem is. The poor kid is sick again. He has had a cough for the past 5 weeks and he managed to put up with it while we were away (he coughed so hard that he vomited most days). I thought that the sunshine had cleared it up a bit, but seems I was wrong. The poor little man has been for a chest x-ray today and we are waiting for the results. I am hoping it is nothing serious, but he is sound asleep at the moment. Even sleeping through the electricians as they bang around. There will always be other days for us to hang out together. I just hope he starts to feel better soon. Most people know that I am not one to race off to the doctor at the first sign of a sniffle. I don't like using antibiotics unless absolutely neccessary because I believe tha...

I haven't had time to post anything the last few days. In between madly trying to paint the back extension and keeping kids occupied ('cos it's school hols and that makes for a very bored Ryley), I have barely had any computer time. I will try and get some more photos posted up though. Our WHS kids are so gorgeous and inspirational! I am also desperate to get writing again and have some interesting topics I want to write about. At the moment I am organising a little Grand Final get together because I have a very excited husband and Ryley (Braeden doesn't really care so much yet!) because the SAINTS have made it into the Grand Final!! So looking forward to sharing the day with some good friends and plenty of excited kids!!

Thomas (Tom) Bethany

Elliott For more about Elliott you can visit his blog Lover of Little Things. Spunky little man hey?

Nicholas Nicholas is a happy boy, music, motion, loves tv, video games,though gets upset waiting for them to load up. He does not speak. Nichoas is fairly mobile and can walk aided though he will walk unaided if he thinks no one is watching. He does make some noises and other sounds. Nicholas has an infectious laugh. This is a photo of Nicholas at Wet 'n' Wild!

As I start to get some permissions through, I will start adding some pictures! I have also asked families if they wanted to share a bit about their WHS child! Matthew: A happy, carefree boy, who is happy to be in his own surroundings, and loves to be with his family, but also loves seeing new people. . He eats and drinks all by mouth, he is non verbal, and has quite good mobility, but he dosent look where he is walking, so does need supervision most times.He has no interest in Television or toys, but does enjoy music playing, he loves swings and horse riding, and travelling in the car or a plane. No obvious internal health problems as such.             Matthew at our family fun day at Wet 'n' Wild

The best place to start would be with the conference! This was our 3rd conference (they are held bi-annually) and it is just so wonderful to see how all the kids and adults have grown and changed. It is always lovely to meet new families as well and we were lucky enough to meet a couple of families who hadn't been to any of the recent meets that we had attended. The conference itself was quite a whirlwind of shared meals, playtime for the children (although don't get me started on Ryley's respite carer-consider a complaint lodged is all I can say), listening to speakers, and most of all, talking and sharing stories with other families. It think the most important thing is that family-to-family contact. Being able to talk about our experiences and share ideas is just so empowering. All of our WHS kids are unique and different. Some walk and talk. Some have seizures. Some are attending mainstream school, some specialist settings. Some are fed via artificial means (PEG, NG), s...

We are finally home after 10 days on the road and 5 awesome days on the Gold Coast catching up with our WHS family. There is so much to share and a million photos, but seeing as we just got home yesterday arvo, I have lots to do (namely, unpack and restock our fridge because beer just won't cut it). It truly has been a trip full of memories, and I don't think we had a day where we did nothing! We were always on the go, exploring new places and visiting places of interest. I will just say that the next bi-annual AWHSSG conference will be hosted by US here in BALLARAT! So I have two years to come up with an awesome 4 days for all our families! I am excited and have lots of great ideas...now to just start thinking about the funding side of things! I will be back later when I have some time to share the highlights of our trip! It is good to be home.