It’s the small things

So let’s just start off saying Cody and I had a rough night. He’s not really sick or anything he just woke up a midnight and refused to go to sleep until 3:49am, so we’ll just say I got very little sleep–Cody did too. Luckily though, he woke up happy and looking at me from his crib, so all you see is his little head with a big grin hahaha. Oh! I forgot to mention Sunday was my third mother’s day(wow!) crazy how time flies right? I guess I never updated this after going to the equipment hospital so I’ll quickly put everyone up to date, Cody got measured for his new Foot SMO’s! they’re foot splints instead of leg braces that come up to his knees.(they come up to his ankles instead!) which is a huge downgrade, which in this case–it’s wonderful! He also got an enormous bath chair to bathe him in so once that comes in we’ll see how much he needs it since they said it would take a bit to arrive. It’s all insurance being slow and stalling for who knows why. Here’s the last exciting part about equipment, Cody’s neurologist sent to get a “mobile device” a.k.a therapeutic stroller so we could have and I was really not that big on the idea until we saw that we could get something much less “therapeutic” looking. It’s called a Stingray Stroller and it’s probably the coolest special stroller I’ve ever seen! It’s got these big wheels and you can rotate the seat 360 degrees and use the stroller for him to face you and to face outwards. I CAN’T wait until it comes in! UNFORTUNATELY, Cody’s dad got his way and picked the dull grey color instead of the cute flamboyant turquoise. His reasoning “It will stand out less” yeah I guess but It still looks dull. haha no matter! it’s a stroller and that’s all we care about. Now to the whole reasoning for this post is Cody and I were enjoying some educational/entertaining videos this morning in which one of them sings “My eyes, my nose, my mouth, my ears!” and points to them in the video and as I looked up to see Cody he was pointing to his eyes, nose, mouth and ears in time with the song. It was so cute! I can’t believe how smart and big Cody’s getting and I couldn’t be prouder. The next video we watched is actually a short series called “Pocoyo” about a little boy and his friends (a duck and an elephant) which is a super cute show especially for kids. The thing is he’s very hot and cold with TV shows, he won’t watch just anything like other toddlers do. Same thing with this show, sometimes he hates it and sometimes he’ll watch 2-3 minutes out of the 7. I don’t think this calls for concern as he’s still young and TV isn’t that great for you anyway. Anyway! at the very beginning of the episode, it opens up with Pocoyo (a little boy) and his friends building blocks, the narrator opens and says “Hello everybody!” in which Pocoyo –the only one being able to actually speak– says “hello!” and I looked over to Cody and he waved his hand at the screen! I just about died. He just learned recently to wave “Hi” and “Bye” which is not perfect but it’s a arm in the air and wiggling of the fingers. I’m so proud of my little guy!! He makes so much process in so little time. Then he fell asleep in my arms to “Circle of Life” in The Lion King. he’s such a sweetheart that boy!
Really hoping this week ends quickly because I have to finish a research paper and then court. how fun.  Hope everyone has a wonderful week! 

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Just the Usual, kind of

So Cody’s two weeks of congested nose turned into an ear infection and he won’t stop coughing and he can’t breathe. It breaks my heart and my sleeping patterns..haha but really, it makes me sad to have to hear him cry at night because he can’t breathe. Then there’s the whole “hot air is better than cold air” and no, apparently it’s not. If anything it makes it worse so I turn on the humidifier every night and it somehow gets changed to hot. well..whatever. Anyway! I just made a shirt that says “someone I love fights Dystonia” and it’s blue and I’m going to wear it around all day this weekend for the last few days of “Dystonia Awareness Week” I kind of messed up but as usual, my creative abilities came in to play and somehow saved the shirt (hooray!) Today Cody is getting his new orthopedics done! so basically he’s getting new braces but this time they’re going to be small and only come up to his ankles– this means I get to go shoe shopping! So while he sleeps and I wait for his dad to get here to drive us there, just getting some homework done that I have to turn in on Monday. I honestly just want next week to be over because on Friday I have to go to court for “violating my provisional license” and by that, they mean I was driving past midnight but I was 19 at the time and apparently, “this law does  not apply to those over the age of 18 and they may drive at any hour” SO, I basically got a ticket for no reason and now I have to go tell the judge that the cop is an idiot– basically. Hopefully he won’t show up and I don’t have to see his face again because he’s clearly illiterate and does not know how to read red bold print.  alas, what can you do. Off to get ready for the doctors appointment. keep wearing blue everyone! 

Go BLUE! movement.

Go BLUE! movement.

I dyed a streak of my hair blue on friday for the whole week, it said on the box semi-permanent! turns out it wasn’t semi-permanent at all because it’s already faded a good amount and i’m not sure I’ll be allowed to do it again… so I’m acquiring a large hair bow to put on my hair and wear it the whole week no matter what.
Spread the awareness! Lots of people are out there who still don’t know anything about this disease and people must get informed!

WOW!

I am excited and a little upset about how many people out there have Dystonia. I really thought it was something rare that didn’t affect many but it does. I’m upset because I wish this disorder didn’t exist and there were better treatments out there for people so they wouldn’t experience all the pain and struggle that comes with Dystonia. I know that Cody is still young and cannot communicate with me how he feels and if something hurts but I feel much more relaxed now that I actually have support and can talk to others that are going through the same things that Cody deals with every day. I’m intrigued to know how Dystonia is affecting other people around the world and what I can do to help raise awareness about it. I know my parents will not be happy about this but I am going to dye a small streak in my hair blue for Dystonia Awareness Week! or just all the time so If anyone asks me what it’s for I’ll just give them a brief synopsis of Cody’s Dystonia.