Alin's Site

Well it’s that time again! Time for a Sevoflurane countdown!

Tomorrow, I have to go get my tracheostomy tube changed. I get that done under general anesthesia with Sevoflurane. So here’s the countdown.

Well I got this on Wednesday but am finally getting around to writing the blog post for it. I got this awesome squishy heavy gel pad. It is very heavy and sparkly and it smells nice. I took a really long video of me opening up the box and getting it out and also quite a bit of self sensory stimulation. Left the camera on for a while, there is not much sound and stuff going on but its a good sight into my autism.

Click above for video and the pictures are on the gallery

Nancy, thank you so much!!!

Finally, I have it working again. After having my ultimate spelling and grammar checking program out of order for a whole day because of a faulty system update, it is working again. Thanks to the software creator David Long giving me the advice to reinstall the update manually off of Apple’s website. Apparently, the one that the computer auto-downloaded had a corrupted file that the program depends on to work! I ain’t advertising or tooting the horn for David Long and Linguisoft but, really if your looking for what I think is the ultimate grammar and spelling tool, and what many others think so too, you might want to check out the website. And to boot you get ultra fast and ultra personal customer support right from the creator. Not some customer support representative that does not know half of what he is doing.

With this said and with the fact that I am just not in a unboxing mood today I think I am going to spend a lot of time today sorting through my blog posts, and making all of them correct spelling and grammar so that Google will rank my website higher, When content is typed better apparently Google likes it and ranks the site higher. And it just reads easier too! So expect me to be sweeping through the blog over the next week or two correcting all of the posts and content on my website.

Remember that promise I made a long time ago to tag every single one of my Flickr photos? This is not a promise that I am going to end up letting gather dust on my ‘promise shelf”. It’s going to get done. I want more views on my website. I want more views on my Flickr photos, but one has to be in the right mood for mass tagging photos, I have made good progress anyway and all new photos have tags, I will return to that project sometime. There will be a huge amount of very old pictures from me in Romania and my arrival here in the United States from our old hard copy collections incoming. That wont be for quite some time though!

We are having a fire tonight and I am doing private burns, so if you want me to burn something for you contact me via the contact me button and send it and I will E-Mail a video clip of me doing your burn. There will be no public service.

Two days ago on Wednesday I got some presents from Ariel, MyBigMouth’s daughter. I didn’t know people gave gifts in the dead middle of October! I hereby DEMAND everyone send me gifts in October in celebration of Halloween and the Fall Solstice. Okay just kidding!!! Any who Ariel sent me a Lemon tea light, and a Fall Solstice candle and some Butter Pecan Cookies. All of it is homemade, aside from the card! Click the photo above for more pictures. I also got a candle of hers on a candle warmer and in the video below I decide to make a little fun and talk about how I got it running off of my cable box. The video is kind of funny.

 

As you see in the video above there’s another item I have to unbox that I received Wednesday, I’ll do it tomorrow maybe today just depends on what I have going on. Might be having a fire to burn up old documents tonight, burning stuff always helps me rid myself of negative energy within

Some of you have been requesting a video of how I currently prepare and do my feeding so I decided to make a funny but long, but again I repeat funny insight and documentary of how I prepare one of my G-Tube / Enteral feeds. This is what I live off of people. I eat little bits here and there orally for enjoyment only.

All of this said the unboxing of the box showed in these videos will happen tomorrow due to our plans to probably have a fire tonight.

September showed some nice growth in my statistics!

I am sure you all have by now seen the blog post about Amanda Liberty from England visiting, if not hit the link here and take a look. Her costume was soo silky so velvety and aweesome and cool I had to have one of my own and Amanda helped that come to fruition. As you can see I really love how silky it is, it is awesome and velvety. On top of looking great it is a very sensory piece for me. You can also check out the video of me below. The video does not do justice for the pictures though, the lighting in the video is kind of crap. But here it is!

Moving on I had some screw come loose on my wheelchair and called Permobil, they quickly sent me some new screws but their packing and shipping department did a really epic FAILURE at packing the screws… Just take a gander at the giant TUBE they sent the screws in in the youTUBE video below.

Last night I and my family had a spiritual journey through fire. This spiritual journey has been recorded by me and I speak in our Burning Bowl 2011 service at our house. Really I need to start working in a church… Or well you will think that once you watch this video! All in all the video is a lovely compilation of speech and fire. Oh and pyromania!!!

Amanda Liberty a very close friend of mine came to visit me from the UK and she is now in Indiana and will be spending until November 4th in the United States, spending 4 weeks in NYC. She is a statue of liberty obsessed girl and shes quite fun. She had fun visiting with me and we played some games, click above for a load of photos. 102 to be exact!

Wait, Celebration Of Hope is something that Willow Creek church does every year, why do I have two blog posts with the same name you are probably asking yourself. WRONG! Celebration Of Hope 2011 was a two-day celebration of my diagnosis of Atypical Rett Syndrome, the night of my diagnosis we drank some Sparkling Apple Cider and gave cheers. Then last night Sunday we decided to have a fire to celebrate the sheer amount of hope in my life and that I will live a long life and have a long bright future ahead of me. The fire symbolizes burning off the negative diagnosis’s that I have carried for the 6 years it took for us to finally find a correct diagnosis. The fire symbolizes strength in life and love, MyBigMouth shall be my love forever. I am just so happy. I had much fun burning wood last night with dad, and we will do more wood burning this coming week probably. This is the first time I have ever done it since I got my tracheostomy and let alone my ability to walk (albeit unsteady) was restored. You REALLY need to click the photo above and see all the big photos I took!

It’s October which is International Rett Syndrome Awareness Month, So we are lighting our house purple. If you’re on Facebook hit this event and go ahead! Let’s get more people to light purple for Rett Syndrome. I have been diagnosed with it, and we are really going all out to get donations to IRSF my website and other Rett charities! I hope you will donate or at least Wear purple or Light your house purple this month! Let’s spread the awareness of Rett Syndrome!