I really should be more responsible in knowing who’s coming when, and by who I mean the therapists because turns out I forgot OT was coming…and speech and specialist..and PT came too..so there were four specialists in my house for hour and a half today and I apologize to everyone for that. What I liked about today’s therapy session was that everyone was there to help and put some input especially since every one knows specific areas in which Cody thrives and ones in which he needs more help. I learned a few things as well to do with him, He’s got a pretty long way to go for communicating because of his delayed gross motor skills, but I know that it’s slow path and with baby steps (literally) he will accomplish great things. Today we worked with a tech device in which he presses a square and you can insert different pictures and record your voice–it’s pretty neat. He was very distracted and reluctant to cooperate at first because of the uninteresting activities we were hoping he would do. Luckily, the bubbles came out and he showed them how well he can reach and his determination to finish the task. He had to press the square with the picture to “open the bubbles” first and then press the symbol to “blow bubbles” and every time he would reach and press it and succeeded in getting a billion bubbles blown in his face, he loved it! He worked so hard for that hour that he passed out on my bed as soon as we got upstairs. I’m hoping he takes one good and long nap, he deserves it. I also wanted to share something that actually made me really happy. A while back I posted a picture of Cody and a brief description of what he has and how he fights life with a smile on tumblr. Someone I follow, who is around my age, reblogged it and then had 53 other people reblog it– the purpose of the post is to raise of awareness about Dystonia. I’m really glad people are getting informed, I have my hopes high for a better treatment and cure for all people dealing with this disorder. They also mentioned that Cody will be having an assessment to see what special school he will be able to attend in the winter. Yeah you read right. the WINTER, instead of starting pre-school next fall, he will be starting as soon as he turns three. Thoughts and feelings? Anxiety, Excitement, fear, joy, mixed emotions. We will see what’s in store for us these next few months!
oh! also, I might really be pursuing a degree in Occupational Therapy. I’m already getting some experience and I would love to help other children like Cody in the future. Besides, the therapists think I’m already quite a natural 😉
So this is not one of those every day posts I make about Cody, or anything that’s happening in my life right this minute but I kind of wanted to talk about it and sometimes it just never has time to come up..so I don’t bring it up. Anyway, about self-esteem. There’s so many ways for me to approach this that I’m just going to start writing whatever comes out of the top of my head. I can definitely say it’s something I’ve struggled with (and continue to) for a really long time. I can’t exactly say where or when it started but as I grew up I realized I never really felt good about myself. I never thought I could do anything, my thoughts were always so pessimistic and it was always “I can’t do it” or “I give up”. I’m also going to be extremely honest but sometimes I continue to say that, because balancing school (even if it is only 2 easy classes) and Cody takes a huge toll on me–not because it’s hard but because of my self-confidence/self esteem. It’s probably one of those huge things that I’ve tried for years to change and never really saw improvement. People have always complimented me and admired some of my skills but I saw it as empty compliments and false admiration. why? well simply because I had a hard time seeing what they saw. I’ve even had major emotional breakdowns because I wasn’t satisfied with who I was and I can’t speak for my future self, but continue to struggle with. I will say this though, I have improved from what I used to be and I don’t want to give too much credit out, but my boyfriend, my friends and even some strangers have helped me to start seeing that. I even did a “30 day self-esteem challenge” to at least see some good in me– and I do. I won’t ever be perfect, I realize that, or what I believe to be perfect but I am starting to be happy with who I am. I have stopped comparing myself (mostly!) to other people and instead of moping I try to change whatever I’m not happy with, sometimes it just doesn’t happen though but that’s okay. Another thing is seeing Cody improve and fight all his daily challenges with a smile has really opened my eyes to see that the world isn’t all bad and I am trying to look on the brighter side of things. My glasses are (almost) all completely half full! Now what I want to do is help someone else. The biggest reason why I feel like I’m here is to help others, or make people smile/laugh/giggle/chuckle whatever you want to call it. So if there’s anyone out there struggling with life, on a rough patch, or just seeing on the darker side of things…just remember: It’s not the end until the sun comes out, yes there will be rain and some storms but that is never the end, it’s always the beginning to something new.
Someone I really care about once told me this, “Smile, even when you’re upset. Psychologically if you smile or even fake a laugh you will actually feel better”. I thank that person for that every day 🙂
Let’s start off with some good news! We went to the most emotionally draining place in the area to see Cody’s specialists for a check up today. They wanted to see how he was doing post-Botox and man where they satisfied. First of let’s name who was actually there. First and most importantly was Dr. V, she’s the neurologist and Cody’s specialist, she runs the white brain matter disorders clinic at Children’s National up in DC– she’s absolutely wonderful by the way and we love her. Next up comes the assistant who was actually there first of course and seems to have a notable preference to Cody’s father–why? because he emails her all the time instead of letting me be in charge of that…as I once was but I’m glad he’s at least being more involved. One of the other specialists Dr. B she’s a sweet and tiny little lady who’s always there to help and answer questions I think she’s part of the rehabilitation department at CN. Then there Dr. C, the man who’s actually one of the physical rehabilitation specialists and was the one to perform the Botox procedure on Cody. He was EXTREMELY helpful today because he said he wanted to have new and more helpful equipment for my son made, like a new seat/insert and new SMO’s instead of AFO’s and the difference between the two is that AFO’s are long braces that come up to the area right beneath the knee and are mostly made for support. Now that Cody is starting to stand better and take steps, he recommended getting the ankle short braces to prevent his feet from bending inward. (My feet do the same thing! darn you high arches!) Oh and let me mention that there was a new NP–nurse practitioner– who’s name escapes me but she was BRITISH!! and she had this accent that was just so splendid. Except there was one problem with that… and how do I explain it?..well every time someone with an accent talks to me, I subconsciously and involuntarily attempt to make the same accent. I DON’T KNOW WHY. It seriously just happens on it’s own and at times it’s hard to control– I’m not trying to mock really it’s just a thing I have. Oh and speaking of things..I dropped a “thing” bomb in front of the assistant and she laughed about it. It’s just one of those sayings that “young people” say and I’ve actually caught it from my boyfriend who says it ..QUITE A LOT. I’m pretty sure that’s everyone besides Tyler, His Mom, My mom, Cody and me. It’s always a party. SO ANYWAY, good news is that we will finally get this whole exome gene sequencing test over with and hopefully find out how this disorder came to be, hoping it’s just how Cody is and not a hereditary disorder because I definitely want more kids in the future!
All the doctors/specialists were very proud of Cody and how he’s overcoming his challenges and how well he’s developing after botox, I must say it’s a wonderful thing. Then there’s the whole he’s sitting better, and babbling more, he’s very smart and learns at a faster pace. Did I mention everyone thinks he’s charming? Oh yeah. QUITE the charmer alright…It’s going to bring me all these problems when he’s older– great. Well I can’t complain today wasn’t as bad as others except there is one thing I’m pretty upset about.
My phone no longer takes pictures. Yep, the camera died and so I can’t use my 2 favorite applications: Snapchat and Instagram. Oh well 36 more days till’ iPhone5!
So here’s something I actually hear a lot about, long distance relationships and as a young mom, I can tell you it’s definitely not as bad as some people make it out to be. Then again, my long distance is only 15 miles and I see my significant other maybe once every 1-2 weeks due to the fact that he’s doing something productive with his life. I’ve been in relationships before (without Cody of course) and they were never long-distance and they never worked out in the end to be honest. The relationships were unhealthy, clingy, possessive and for a better word…immature. okay, maybe I’m just describing me IN the relationships but still. My pre-teen/ early teen years consisted of me wanting so desperately to find my soul mate very young–much like my parents did since they’ve been together for 36 years; marriage included. I think I can say the same thing for my sister since we have both been through pretty much the same things EXCEPT I got pregnant and she did not. Anyway, in the four months that I have been in a long distance relationship I can actually say I really really enjoy it, because not only does it give me room to grow as a person, but I’ve actually developed trust in someone and I’m not constantly worrying about who he’s cheating on me with. Which is ironic because it’s long distance right? There’s always that something my parents told me and I never believed it (much like everything else in life) but missing your partner really makes the heart grow fonder, the more I miss him…the happier I am when I see him. My stomach builds up all these butterflies of anxiety that explode once I see him. I know it won’t be long distance during the summer and I’m hoping like crazy that I won’t mess up (again) because I have a record of really screwing up in a relationship and causing it to burst into flames!– but I’ve grown (a little) and hopefully I won’t make the same mistakes as I have in the past.
plus, I really like this guy AND so does my son! which is the biggest most important requirement in my book.
so here’s to long distance, making the heart grow fonder since humans exist.
So I guess I will try to explain this in the easiest way I can, but I can’t guarantee anything too simple. My son Cody, has a movement disorder called Dystonia and just very recently–about two weeks exactly. He had a new treatment performed on him in which they insert a tiny amount of the chemical Botulinum Toxin into the muscle, it is a procedure in that specialists refer to as “Chemodenervation” or to put it much much simpler, they put Botox injections in his calves, back of the arms, front of the armpits, between index finger/thumb and shins to relax his muscles a great amount. Oh and they sedated him for 10 minutes so he didn’t feel the shots and was perfectly fine an hour after procedure so this isn’t too bad!
Anyway, so pre-procedure we used to hold Cody and have him “try to walk” on the ground while holding his whole upper body by under the arms. Cody would “walk”– if you will, but it was more of a hopping around and his legs would cross an excessive amount causing his legs to get stuck one behind the other. Well two weeks post-Botox and I must say when put on the floor to “fake walk” his legs never ever scissor or cross! It is probably the most exciting thing I’ve seen in a month or two because he actually lifts one leg and then the other instead of both simultaneously resulting in this awkward hop! He’s also really begun to sit with his legs in a diamond shape which was unbelievably impossible for his stiff little legs which has actually helped him to sit up straight and actually sit for a good amount of time. I’m so excited for the next few months of therapy because I know from here it’s only going to go up up up!
Good morning world and to all who inhabit it!
Last week was one crazy hectic week. It started out with the weekend where I found myself getting sick, my left tonsil was slightly covered in white gunk and it was beginning to hurt to swallow–so without a minute to waste I got it checked out at a walk in clinic where they said “Oh it’s only strep” and prescribed me with Azithromycin or Z-pack, and if you haven’t ever taken this medicine it’s got a high dose and a supposedly quick acting agent that’s supposed to help you feel better after 24 hours of use. well… that didn’t turn out quite like it was supposed to because my birthday came along (Tuesday April 16th) and I was on day 4 of this “so called” powerful antibiotic, I still had high fevers, chills and body aches. Tuesday morning I went to my regular practitioner and the PA immediately told me it was tonsillitis and not strep itself but that the strep bacteria had caused it so I was then put on a mixture of Amoxicillin and Clavunate Potassium which together pack an even bigger punch! I’m currently on day 6 of that so 4 more days of antibiotics! Oh and let’s not forget I got a little visit from mother nature that week so…last week was pretty much hell. I wasn’t even allowed anywhere near Cody for about a week and a half so that was pretty depressing for me. The weekend surely made it better though! I got to spend time with the significant other and we went to Georgetown for a nice morning walk and some shopping! Now back to the old grind, got to get ready for class later today and make Cody lunch. I know I’ve got A LOT of catching up to do after missing a whole week!