No more Dull Drives!

I remember looking forward to the days when I was going to grow up and be a soccer mom, sans the dorky minivan. I of course was going to have a sleek squeaky clean SUV. Look at me now! First of all I love my minivan and will probably never go back to anything else, wheelchair or not. Second of all you could probably survive a week or two out of my car. It's a mess and I can't fully blame it on my crazy life. I am naturally a very disorganized person. 

Instead of soccer I drive to OT,PT, Speech, ABA, countless doctors appointments and now karate for Bro. As far as mileage goes I blow soccer moms out of the water! What I'm trying to say is I spend a ton of time in the car! Sometimes it's boring! Hubby does a significant of driving for work and he has always listened to audio books. There used to be a blockbuster video type place where he would go and rent a book to listen to on his trips. Why did it take me so long to catch on to this brilliant idea? I don't know. 

Now there is this little thing called audible.com. No, they aren't paying me to endorse their product I'm just really trying to help moms who hear other moms talking about a great book series they just finished and there making a movie now, and blah, blah,blah. No more saying "Hunger what?". Now you can quote "and may the odds be ever in your favor" like you know what your talking about because you read all those books or listened to them anyway during your soccer mom shift. I have listened to so many great books this way! You just sign up for a monthly subscription and download the app. I have the lowest subscription I think it's like 9.99 for 1 book a month but you can try it for free. You should so you stop hitting your head on the steering wheel when you get in the car and realize all the driving your about to do all day long! I think it might be fun to keep you updated with what I'm reading and I would love it if you would message me with your great audible finds too! Have you listen to /read any good books lately?

Service Dog for Beebs

Are you ready for our next adventure? After being on a list for a service dog for two years (not to mention monthly nagging emails) I received news that Sadie will now receive one! Are we excited? YES!!!And nervous, and hopeful and just down right giddy about it. Sometimes I think I'm just as excited about getting a service dog as Sadie, who you can imagine is over the moon(verbage for you Dana). This news has been a welcome distraction while we are waiting to see the metabolic specialist for Sadie's new diagnosis of a Mitochondria disorder. So instead of throwing myself on the floor to kick and scream in frustration for the lack of progress I've been busying myself with reading about dog behavior and training. 

Two years ago I saw this video. This girl was just like Sadie at the time and I had a strong feeling that I needed to get Sadie a service dog. I called my best friend Maria, knowing she would give me honest advice and of course tell me I'm crazy and I have to much to deal with already. Instead she affirmed my feeling and told me that if it was something that could help Sadie I could do it 100 percent. Then she told of how even though she didn't think she would have ever been a dog person, her dog Zoey is a very much loved addition to their family and has been great for her daughter Abby. So here I am two years later and it's happening!

I don't mean to be insensitive to those who for whatever reason take on the rigorous process of adopting a child but in a sense I feel like thats exactly what I will be doing. We will start training with a dog who is about 18 months old. There will be at somewhere between 3 to 6 months of training before we get to bring the dog home and then more training after that. It is a very thorough process, the very reason why I chose to get a dog in this way, other then fundraising for a dog and having to go out of state for a shorter version of training. I know that I will need the training just as much or even more so then the dog:) We will most likely be getting a Labordoodle or a Poodle, both which can help with Sadie's mobility issues and Autistic behaviors. I will keep you updated on this process every step of they way on my blog and on our Facebook page so keep checking in to see the progress. 

"Beebs Disorder"

(photo from here)

I thought by the time I got to writing this post I would feel solemn and serious. Bro however has just finished telling me about his bad dream where Sadies Physical therapist jumped in our car and locked us in her house (he calls the PT office: Rachel's house). Sadie started giggling uncontrollably and then both my children found a couple kazoos and proceeded to hum/play "We wish you a Merry Christmas". It just reminds me that I could have so much more to worry about. Not meaning that I'm actually scared of Rachel holding us captive for physical therapy (although I wouldn't put it past her) I just mean that I'm grateful my kids are happy and silly and may or may not have a future in the art of kazoo playing. Anyways, here is my serious news:

Sadie's neurologist called me earlier in December to tell me that she has a mitochondria disorder. ((((confiscating kazoos now)))) This means that the mitochondria in her cells are not processing food into energy which is the purpose of mitochondria. This totally explains why somedays we have Snail Sadie and some days we have Jetpack Sadie. This also means she most likely does not have cerebral palsy and that her Autism diagnosis is most likely a separate entity. This also means that her spasticity is again a mystery. So basically Sadie has a mystery diagnosis that presents as Autism neurologically, Cerebral Palsy physically and includes a mitochondria disease to boot. Until otherwise discovered I am taking the liberty of calling it "Beebs Disorder". 

Now we can't get into the specialist for another month or so but from what I've read there is nothing we can do. From what I have experienced Sadie has had some really good walking days and I want to figure out why. I feel like I have a million questions and theories reeling through my head. I am determined this year to figure out all I can. I am on a mission to HEAL my little girl. I know I can't cure her but I have a piece of the puzzle to go off now. I am determined to stop wallowing in my fears for her and stop getting emotionally bogged down. Reading all that google has to offer about a mitochondrial disorder is scary. It has left me a little depressed for the last month. I'm ready to snap out of this! I hope I can share my findings and find others going through similar situations. I am hopeful today. I'm hopeful for this New Year:)

Freedom at last!

Are you ready to see PURE HAPPY?

Wait for it......

This my dear readers is the epitome of Joy! Beebs received her bike this last Monday and we haven't been able to keep her off. On it's first maiden voyage down the street, Beebs shouted to every passing kid "Hey look! I can ride a bike now too!!!"  The whole time she's riding she's singing a happy little tune and you know those exaggerated sounds from old black and white shows of kids going "weeee and ya hoo!"?- Sadie actually makes those and means every bit of it. I knew she would love the bike but seeing in her face and demeanor how free and successful she feels when riding it is beyond my wildest dreams. Nothing is sweeter. For all those who donated, you brought this smile to her.

Bro was just as excited to be able to ride with his sister. I was a little worried that he might be envious of the brand new bike and all its glittery purple greatness. He was really only concerned that Sadie had a bell and he didn't. Then he remembered his batman bike had buttons that made noises so he went and grabbed that one and was happy as a lark to ride with his sister. 

Sadie has named her bike "Freedom" (it says Freedom Concepts all over it) although not very original it  is quite perfect. Her walker is named "Walkerie". She hasn't named her wheelchair, which is fine with me, the less we see of "whats his name" the better:) Anyhow it's been a little rainy today and so Beebs has assured "Freedom" that she will take hime out tomorrow. I also heard her tell "Freedom" that he will soon be getting a basket with a real kitten in it. Dream on Beebs.

THANK YOU! THANK YOU! THANK YOU!

Witty Word Wednesday