A medical rage...........

 ........is what was brewing in the very pit of my being Monday. We had made another trip to St. Louis just two weeks prior to meet w/ our NF medical team. After being told that Koda's tumor has grown in the trachea area, the doc didn't want to "wait & watch" any longer. He asked us to please see the oncologist within their facility to start or at least discuss the next medicine Koda would be taking to at least stabilize the growth if not shrink it. So in-fact we did; made another appointment/trip to St. Louis to do this very thing. 

I won't go into all the rage of thoughts and emotions this mom had.......there really is no point; because anger doesn't solve anything. The rage didn't make anything else happen, it really didn't do anything for myself or Koda except make for a very upsetting ride home. I was planning on venting here about how no one really knows in the medical field it's just an educated guess.........and I don't know that they really care it's just money in their pocket; you know the same reason we all go to work.......money. Well that was another rage was the money we had put out in traveling, eating, co-pays, etc to make this trip. That money vary well could have been our grocery money for the week, or a gas money to get to work for the next couple weeks.......not only setting us behind but putting Koda out of his "schedule" which is so very important to keep. One day off makes for a whole week off for him. Just some of the thoughts that ran through my brain at the time. 

The appointment was just a pure waste of time, the doctor not only had not had time to review his MRI results, but had not even looked at his file until 5 mins before. She stated "he looks good, so I don't see why he would need to have any meds"..............that's all fine with me too if he doesn't need them, or no chance of helping then I don't want him on any unnecessary medications especially with the side effects that most of these meds have. BUT............didn't you just say you didn't have time to look at his file or the MRI; how do you know by looking at him? Now, I laugh.......it's ok; because I needed this time to sort some things out myself:

Koda has been allowed to be diagnosed w/ NF & this large plexiform neurofibroma for a reason......whether I like it or not; so where do we go & how do we go about it now. The doc stated she would "try" and put Koda on this Thursday's Tumor Conference (today). Wow, they have tumor conferences.......to bounce off of each other what the best educated guess is (like on the TV show "House"). Some of the most educated people right now are flipping burgers due to the economy...........multiple degrees, etc; so are these people that I have been taking him to really the ones that are suppose to be directing us at all? That's the question I have now.

We have the right & should question everything when it comes to our kids! I'm doing that..........so just in the right moment of it all; the clinical scientist, doctor and director for Washington University's NF Center, which is the world's largest research center for NF is coming to KC for a "ask the doc" conference this Saturday. He actually works at St. Louis Children's hospital; probably where I should have been going to begin with. YES, I'm going to the conference! So instead of being angry, I decided to look at this as glass half full......because my very answer may just be at that conference this weekend. Maybe Koda doesn't need to be on these meds at all, maybe just maybe he's suppose to end up with a trach, be on a breathing machine, be on a feeding tube.........just maybe he is. Ohhhh don't doubt for a second that I don't believe in miracles & have faith in a very powerful God & prayers...........but sometimes He allows these things to happen for the good. Really, I've seen it first hand! Am I going to stop doing anything for Koda & just let it happen like that.......NO I'm not stupid and heartless! I don't want for any bad thing to happen to any of my kids, but I need to face the reality of life as well & of this disorder. Koda isn't go to die, but he may have to face many trials along the way as so many of us do. We without anger, as parents, just need to be there to guide him in the best way possible, and with all the prayers do everything we can to make him be the best he can be.

...........is still something that touches every nerve I have, but anger doesn't solve it! Love does! 

Different outlook on life............

............after having a child w/ Cerebral Palsy and another with NF, ADHD, RLS, and PLMD. I also believe in Karma, I thought people stating kids/adults w/ all these alphabet diseases were in some type of hypochondriac disorder themselves. Then, I was faced w/ our precious Koda...........the flying monkey, bull in a china closet, can not sit down or still for "one" moment, chaos. :) I can smile about it now, but I was rather slapped in the face that these "Alphabet diseases" are real; well real in the sense that the medical world has given a name for such behaviors. Such disorders are not fun, they take work & strong interpersonal skills to deal with such an active body. You don't really get it, becuz that's not how you are..........

I was once told by another w/ ADD that the brain is like walking into a electronics department w/ all the TV's (you know like 100 tv's on in one place) being on different channels......and you want to be involved & look at all of them; you like all of them; my mind blows trying to have two conversations let alone trying to think about, be involved in, and liking each and every one of those "actions" going on.

I've also been told, he's a boy........he's supposed to be rowdy, running, etc. Yep, he sure is; but not to the point he hurts himself & others w/o any comprehension of doing such. When he jumps on every chair in the lobby and no discipline, attention, direction works; becuz he can only think about all those things in his head at once plus getting in trouble. Its like the he is the tv, and the remote is stuck on channel up/down back/forth constantly.........and my words of direction are in there somewhere but he can't stop on it long enough to think about the consequences let alone care. I saw the results of his brain activity........well it's the best and fastest ping pong game ever and never ending.

As I posted on Facebook though, I really have decided that Koda has a diagnoses of creative energy......its ok that the medical world wants to call it ADHD, so they can have a reason to prescribe drugs to make "themselves some $$ bonuses from the pharmaceutical companies", and make our kids get to the point "the world calls normal behavior".

Its all ok, but really every bad can be used for good! I believe things happen for a reason! I'm not saying that medication, docs, pharmacies, etc are not needed; they are needed and they have their place.

Koda is medicated for his creative energy, but not w/ stimulants like most that "alter the behaviors, spirit, natural given personality of a child".

If everyone sits down & is always quite.............what a boring world this would be. I know these types of people can drive others crazy; but it's ok! Its ok to be different, and "not normal"........who decides that anyway? Who would run the marathons for fundraising efforts such as NF, Cancer, etc.  or happen to be in the right place to save someones life........without such energy. We need people who are multi-thinkers on a dime, so decisions can be made at the last minute: for example, we need to save our country? I'm not making excuses or cover-ups to make myself feel better about having a child with such issues......but I am standing up for the spirit, personality, and/or natural nature of who we are inside & most of the purpose of what we are to become.

I never heard of public school homeschooling...........or virtual public school, well I knew that to get Koda out of "the troubled child" stage at school we had to do something or his spirit would be weakened if not totally crushed by no, stop, that's not right, wrong, sit down (when he can't), because he would be considered different, slow, special ed.......it's all ok, becuz we decided to home school him this year. I couldn't afford at the time to do a Christian based home schooling due to all the costs of supplies, etc. Plus with him being in a brick & mortar preschool last year; they did set up an IEP (Individual Education Plan); so he will continue to get services (therapy, etc), thru the school district.

We are one week in, and I am smiling at the progress........I am enjoying my child! I was concerned w/ the social skills he would need; but there are a great group of leaders, seasoned moms, etc....and even new ones; ready to get our kids together often to play. Matters of fact, we have our 2nd group play date tomorrow........he has looked forward to it all week & worked hard! I have more energy......wow it takes a lot to get a long drawn out boring story to be interesting to a boy that could care less; but we act out our books.......pics will be posted soon. Truly enjoying my relationship as his learning coach, and allowing him to be just what he is supposed to be.............FULL of LIFE!

A different outlook on life.............You have a purpose ......I'm positive it's all ok, and different is good!