Sunday, February 16, 2014

Aspie Awesome

Last week I took Roo to the Neurologist after a long inner debate on whether or not I thought we needed to. Well it took almost two months for the appointment to roll around so it gave me even longer to make the decision that it needed to be done. Part of it was courage given to me by one my friend, whose son had recently been diagnosed similarly, to gather the cajones to make the call. I made the decision part to the dismay of family members and even the skepticism of Roo's Dad. But sometimes a mom does know what is best for their child. I got confirmation of the diagnosis I had thought was heading our way. Asperger Syndrome. I wanted a diagnosis to be able to get Roo the intervention he needs to be the most successful that he can. That is really the job of any parent. It also was almost a sigh of relief to know that some his behaviors were not just to piss us off, but literally because he did not know any different. Now for the technical portion of our program... Asperger Syndrome (as it applies to ROO!) is High Functioning Autism without the language component. He does not have any intellectual delays, he has issues with social situations, and sensory issues, intense interest or focus on subjects (for Roo it is SNAKES), repetitive behaviors (food cannot touch, he will repeat words until you verbally acknowledge that you heard him),he is clumsy, strict adherence to a schedule, there aremore quirks but that's about all from the top of my head right now. Let me reiterate, this is as Aspergers applies to Roo, not other children on the spectrum or other children with Aspergers. He will not be in special education classes, infact he excels in math, he will need occupational therapy and applied behavior analysis therapy to address some of the above issues. We need to work with him on social situations and things to do and not do, like if you want to make friends you don't walk away from people when they are talking to you because you only want to talk about snakes. The best person right now to compare him to is Sheldon on the BIG BANG THEORY. Please do not let this make you think differently about Roo. He is an amazing child whose quirks make him who he is. He is a brilliant, affectionate, caring, rambunctious little boy, who will make you smile all day long if you give him the chance to. I would change the name of this blog if I could. It is a long road ahead of us as J and I learn how to navigate our lives with the added bumps, but Roo is worth every single second of the journey. Prayers and questions Welcomed~Kimmy

Thursday, February 13, 2014

Round Four Win.... Goes to Jason.

Okay so good news or bad news first? Always start with the good, it can distract you from the bad. The good news, the tumor and subsequent bone they took out pathology came back and the bone and muscle pieces had clear margins! He is walking a bit better but is still on crutches for a while. And now for the bad news. The pathology came back as leiomyosarmcoma. This is a cancer that arises out of smooth muscles, it can happen to anyone but Jason's is related to his prior radiation to the area. His earlier cancer was germ cell based and those cells are considered very primitive and can form into any number of things if they feel like it. These choose to turn into smooth muscle cells and cause us some problems. It is a low grade malignancy and we caught it very early. Fingers cross that the only treatment he needed to receive was the surgery. As of now no chemo is expected to be had. We are back to going every three months for scans for this. So this is round number four of cancer for us, we've had worse news. Jason is in good spirits, he says round four went to him! I'm okay, always the worrier. We also took Ronan to see a neurologist and got some questions answered about our ball of awesome, but that post is for another day when I don't have to be up at 3 to get ready for work! I'll post more tomorrow about Roo. Hope everyone has a fantastic valentines day! Remember valentine is not just about romantic love, it is about friendship and loyalty. All of you guys reading this are our valentines! Love you all for the support y'all give. Prayers welcomed~Kimmy