We have just had THE loveliest weekend. On Saturday we went to Ella's birthday party which turned out to be a pool party. It was just so great to be relaxing with great company and wonderful happy kids, it was definitely a day to remember. Elliott spent most of his time in a floating cabana chair (with palm tree and all) while Brendon and GH supervised and created some wicked waves for him. He had soooooooo much fun and it was a really special thing for me to watch, my heart was melting. I do get a little sad sometimes that he can't sit and play in the bath or have that sensation of floating in water, its such an amazing feeling to be floating, and I've totally taken that for granted. So, even though i have an absolute fear of the sun and the heat, i really want to try and get my little man to the pool this summer, he deserves to have that floating feeling in his life more often....well, in the very least, I'll look into getting us a pool for the balcony!
After Ella's party, GH, AC, NH and i headed back to mine (with a few bottles in hand) to play some Pictionary and to make Chocolate Crackles. The fact that we left our brains at Ella's party made for some very interesting games...and stories! Me and NH had our arses flogged by the girls, all in all, good times, good times!
Elliott's Birthday.
We spent his actual birthday at home mostly but went out for a bit of lunch with Nan. Nan got him a chair which he seems to tolerate quite well, as long as i don't have anything to do with it because he's a stubborn little bugger when it comes to me and physio therapy.
His birthday party picnic was at Edinbourgh Gardens Fitzroy. I spent all week getting prepared for the big day, and all the hard work paid off and the party went down a treat i reckon. A big thanks to GH for your help! Again, i had a fear of the heat being out of control on the day, but it was perfect weather @ about 28 degrees....hoorahhhhh!!!!!...i still managed to get super sun burnt though.
We were especially excited to have Anna, David, Braeden and the dear little Ryley (8yrs) come to our party from Ballarat. Ryley has WHS too (you can meet him here), and i was so proud to be able to show him off to my mates who had already heard so much about him. What hadn't really occurred to me is that it could be an uncomfortable position for this family to be in, to come all this way to a party where they know no-one, but i guess because i know my mates, i knew that they would be made to feel more than welcome.....guests of honour if you will! Anna blogged about how she was nervous about coming for a few reasons, but soon realised that being around friends of a another WHS child means that you don't need to answer questions, you don't have to worry about people staring at your child, you don't need to explain why they don't talk or why they're so small....the list goes on.....but what you can do is, sit back, relax and feel no pressure about any of those things and more. I was so very chuffed to read that she felt like this but amazed to hear that it was for the first time in 8 years. I wish we didn't have to face these questions and stares, but i'm so glad they were able to relax for at least one day. Thanks again to you guys for coming. Oh and, they got Elliott a wicked mixing desk for his birthday too....AWESOME!!!
The most part of the day was spent mingling and wrangling children and moving the food out of the sun....and there was also a bit of bubble blowing and bubble drinking going on too. Pass the Parcel was a highlight, although i'm not sure how Elliott will go with his winnings...pencils...i was gunning for the bubbles!! Elliott scored some awesome gifts and i want to thank everyone who came along, who helped out and for just being there. His birthday, well everyday really, is an achievement in my eyes and it's super important to me to celebrate these achievements and his life, and to have so many supporters on board really warms my heart, so thank you.
Some other special friends of mine Kris, Brendon, Jackson, Millie (And *Lola*) came along, and not only helped out and spoiled Elliott (with THE coolest backpack you have ever seen wrapped in hand painted calico wrapping!!!), they stupidly, ridiculously got me an amazing gift too. I say, "stupidly" and "Ridiculously" because they were showing their appreciation for the support I've given them during their darkest days of losing their precious "tiny girl" *Lola*, and to me, i just wanted to be there for them, in any way i could....and you know what?.... this service i offer is FREE, it deserves no reward!! They say, i deserve it, but i was/am simply hoping to drill into you that i am here for you guys.... but still, i say THANK YOU anyway for thinking of me, it means a lot and i can't wait to book into the Thread Den and get busy with you Kris! MMMWAHHHH!!!
Lastly, on a medical note. Elliott had his EEG last week (not a good experience at all) and there looks to be a big improvement on his last one that showed seizure activity every 10 seconds which is great news. December is going to be super crazy for hospital appointments, we have Audiology, Opthomology, Cardiology and Orthopedic Surgeon appointments with a few blood tests, immunisations, x-rays and ultra sounds mixed in there too....eeerrrrrr....it's makin me tired just thinking about it! Wish him well hey....especially with the Cardiology and Orthopedic appointments.
Till next time, take care in this heat people.
XXL
