Skip to main content

Blah!

So I had so much blogging to catch up on that I never got around to....like I wanted to post the pictures of Cade navigating the Chick Fila play place...He did that so well! Or the cute pictures I had of my two little guys from Halloween last night...Or their surprises from the "Switchwitch"....
 
But...
Instead of all my fun, exciting posts I have a sucky, not so exciting post. Go Figure! It is just one of those nights for me..well, actually it is one of those days, nights, weeks, shit its been months now...
Cade's always made great strides in everything he has done...and he still does which is great! But, when he gets down, it takes so long to get back on his feet again. We need a freaking break. I don't think that will be happening anytime soon. It will probably never happen. If it is not one issue it will be another or a new problem that arises. I mean lets face it.
 
What started off to be just any other day turned bad real quick. Cade had a second seizure today...totally random and just happened. Just like that and it was over that quick too. I guess that means the one he had after his surgery was not just a one time thing and it looks as if we have more going on. It really is frustrating..I hate to write yet another thing down in the books for my guy. His Neuro will see him next week for an EEG to see what that looks like. She also says after two seizures she starts meds because chances are it is epilepsy. I am not quite sure how I feel about meds just yet, but have some thinking to do. She understands, but if a third one happens then there is no other option in her opinion.
 
I am still waiting on Dr. Miller to call me...it is not like her to not answer my calls, texts, or e-mail...Strange. For some reason I think she is out of town, I thought I remembered a previous e-mail from her stating that. 
 
I hope I can put on a happy face and learn to deal.
 It seems like that is getting harder and harder to do lately.
 I also hope my next post is much more positive reading.

Comments

  1. I'm here for you!! I have all faith that things will get back to happy place. .it might just take awhile :/ Love you guys and sending lots of prayers!!

    ReplyDelete

Post a Comment

Popular posts from this blog

Trust the process

So, today has been mentally taxing on me. From finishing up my Summer classes and final tests, to losing a dear, fellow PWS Mom friend, and then taking Cade to his first swim practice for the Special Olympics. I've shared extreme highs and extreme lows today, but as I unwind tonight I feel compelled to share this with whoever decides to read it.  Some of you may know this about me, but most probably do not. I have always felt a strong attraction to working with those with special needs. It just always felt right and from a young age I remember looking up local jobs and volunteer opportunities..always searching for something to fulfill that desire. I was actually enrolled in college for Family and Consumer Science and was planning to go into Special Education. I had taken the Parapro assessment and actively looking for Para jobs. Then I became pregnant for Cade and life had other plans. Given my role now to Cade, isn't it ironic? OK, so here is an e-mail I dug up from my in...

Tired and Thankful

I am the parent of an amazing boy. He is 9. He is smart, funny, and happy. I am the parent of a child with Prader-Willi Syndrome... PWS is a complex developmental disability that results from a defect on the 15 th chromosome. Because of an abnormality in the area of the brain called the hypothalamus, these individuals face challenges in learning, behavior and controlling their appetite. The message of fullness never reaches their brain and they are always hungry. The intensity of their food drive can vary but all require support and understanding if/when they are exposed to food or they attempt to seek food. Food security must be considered and provided in all environments and at all times. While I am first Mom to Cade, just as importantly I am his advocate in every aspect of his life for his rare disorder. I am tired. Remaining humble and thankful for all of Cade's progress is so very hard in the midst of advocating. Some days I feel as I...

Hungry.

It has been a loooong time since I've written, but its time. I need an outlet and the world needs awareness. If you are new here or don't know by now my son, Cade, who is now 7 (almost 8) is a fun, loving, genuine boy who happens to have been born with a rare genetic disorder. Prader-Willi Syndrome. See below from www.fpwr.org if you are unaware of exactly what Prader-Willi Syndrome is... The symptoms of Prader-Willi syndrome are due to dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including regulating hunger and satiety, body temperature, pain, sleep-wake balance, fluid balance, emotions, and fertility. An unregulated appetite and easy weight gain characterize the later stages of PWS. These features most commonly begin between ages 3 and 8 years old, but are variable in onset and intensity.  Individuals with PWS lack normal hunger and sa...