The week I met my son...

for the first time without being prescription medicated for his autism and ADHD. There's no doubt that he needed something to help him since he was 3 years old especially if he was going to enter into a scheduled life of learning in public schools. He couldn't control any of the unique and outlandish behaviors, nonstop talking, there's a leaf or squirrel attention span, and anxiety through the roof.

(Quick update for those following our journey in regards to his skull that started back in November; feel free to read here if you haven't before. We have approval for the neurosurgeon, we don't have insurance approval for the plastic surgeon...how is this? Don't ask me! The insurance says it's not medically necessary. I don't call people stupid...but this is the stupidest/dumbest thing I have ever heard. For goodness sake, he's got a hole in his skull with a major vessel exposed. Whatever! They have drained me but they will not get me to quit. I'm guessing it is because we've met our deductible and they will have to cover it all. We are still just tentatively going to have surgery on April 21st. It's been a long time for this momma to wait. I want this over for his sake because he's concerned, and rightfully so.)

He's always had a great personality, but just like the commercial of the girl interviewing for the job...you got to have more than that. His personality, heart, and smile has definitely proven to be contagious if you can get thru the annoyances and quirkiness. It's hard to understand how someone can look so "ok" and so not be. On top of these diagnosis' he has a incurable genetic disorder that was by spontaneous mutation called Neurofibromatosis. If one struggle wasn't enough, when you build these together it's utter chaos. It's not his fault. It's not my fault. It's the cards we're dealt, and the journey that has taught me more than I could ever imagine.

This journey has put me on a path of research, and boy did I hate research papers in school. It's also been years of trial and error, with us still learning about him and ourselves every single day. I'll say some of the greatest discoveries have came thru an accident so to speak, or just flat tripped over it while walking it out. I've never been more thankful for a journey...not thankful he has suffered with all that he has, but what we've all learned from it.

The reason I title this post the way I did is because I really have never had a full week without him living life without prescriptions. Since February 2016 we've been on a quest to remove as many prescriptions as possible due to the abundance of side effects. You take one thing for a symptom, then you take another for the side effect of the first, and then you domino effect into a crash of chaos...that even the dr's can't help with because they don't know. When you are on (at one time over 20 prescriptions when he was on chemo) multiple prescriptions, no one has done studies of what happens when you do a combination of meds. They don't know the side effects of such recipes. His liver, stomach, esophagus, sleep, skin, and behaviors were all affected greatly. The chemicals in these prescriptions on top of the mix of them...was destroying him. We are not against prescriptions...we are against the over prescribing practices and band-aiding a condition without looking for the root.

Busted!

This is what set me out on the quest of finding the alternative. We did that through a long tedious year with multiple times of wanting to just give up. Over the last year we have gotten rid of 11 prescriptions for asthma, EXTREME restless leg syndrome, allergies, nerve pain, etc leaving us with 3 total meds which are for helping with ADHD and Autism. ***It's spring break 2017***...he has be able to prescription free since last Friday am (now Thursday). We got clearance from our doctor to try a full week of no prescriptions...granted he cannot be without help because he still has ADHD, NF, RLS, and autism. These diagnosis' aren't just going away. We have changed his diet, added supplements like magnesium, exercise, joint compressions, massage with raindrop technique, and a whole bunch of love & patience...and Young Living Essential Oils!

(ohhh gosh is supplements a journey in itself because these too have a horrible to great benefits. If you get a hold of an all chemical, cheap brand of supplements you are swallowing "nothing", and they don't absorb properly, hardly have any "whatever it is you need" in it, your body can't metabolize the type it is, etc. Just because it says magnesium...what kind of magnesium is it, and where did it come from?).

I've been 7 years looking for the best bang for my buck when it comes to the oils. Here's our story on that...my Facebook post. So with great welling up in my eyes and crocodile tears flowing down my cheeks, my heart is wrenching in sadness it's taken this long...I've met my son finally at almost 12 years old. I am getting to experience the "real" him, embracing the joy & compassion in his heart, with excitement seeing his passions/desires, fully grasping his creative and intelligent mind because he's calm enough to express himself fully without the distractions of life, anxiety of the world, and a sensory overloaded atmosphere. I have been blessed with insight this week, and all is well with my soul. I just know he's struggled for almost 12 years living this life...and now I can see his truth. No, we won't get to stay on this regime until after school is out due to many things, but I am awaiting summer in hopes all these last prescriptions will go away. I have video documented and photographed his behaviors this week to present to the Dr...so now as spring break ends I know without a shadow of doubt that God's creation of plants, trees, etc were made for our use...and they have benefited us greatly. I've never met a more beautiful person than my son. Thank you God for helping us all through this far!!

In the corkscrew...

of the rollercoaster...but at least I can breathe. The last month has been a continual slamming of information, changed priorities, and different interpretations as if in a multiple car accident; the hitting comes from every angle. I was lost, dizzy, and discombobulated trying to figure out what was the priority. I knew I needed to find a way to get articulated somehow so I could even function one moment at a time.

Just know that each appointment we were told something different, the priorities changed, concerns changed, and even the status of each exam was interpreted different by each medical professional we saw. That right there has been so disheartening...I felt as if I was watching inside out in fast forward, stop, reverse, with tones of mute, too loud, etc. I have been seriously though all these character emotions thousands of times especially since the results came in from the PET and MRI scans. (side note: if you haven't seen this movie; you should. It was a God send in helping Koda figure out self regulation, and a visual of what emotions act/look like. We refer to these characters a lot)

But today, I can say God has shown up and showed off so far. I love him so much for that. First off, let me say I'm pretty disappointed in the radiologist and neurosurgeon team at CMH in KC. I'm thankful though of these frustrations because it proves people are human, and that we CANNOT put our full trust in any such human; we'll always be disappointed to some level.

St. Louis...I almost tense up because of what all I personally felt and we went through while on that trip to the #NF clinic. We met with neurology at 8am. The scans from the CT, PET, and MRI was supposed to have been overnighted to them in time for the appointment...that didn't happen, at least not in time. Thank God, I was proactive and took all the copies with me along with the written reports. These scans consisted of 3000 images. I bet they felt overwhelmed with being slammed with that. I hated it for them, and I really hated it for us because I just knew we wouldn't get the care needed/or that I expected. Our neurologist has moved on to seeing adults, so we're with a new guy (tho we have met him before)...that can make one fill a bit uneasy, right? I was pleased with the time he took tho he didn't have much time to view scans, etc. He clearly stated we'd be seeing the rest of the team. So we did.

Then the nurse coordinator stated they really wanted us to see the neurosurgeon due to being so far away from home, but didn't know if that could happen. They called the coordinating nurse practitioner, and guess what...she came running up from another floor to assess Koda. She went out into the hall and called the neurosurgeon & left a msg. She told us that he was in clinic but trying to see if there was a way somehow he could see K that day. He called, she came back in to tell us to come back at 2pm. (Thank You God!!!! Seriously...we knew we needed to see him but since we didn't have an appointment...it would be a miracle) Miracle happened. Seeing two neurosurgeon's in one week is a bit overwhelming in itself...but so glad to have gotten this 2nd opinion with expertise in NF.

We went to lunch after getting clearance from the other team professionals, so after getting food we headed out for our faithful visit to "Big Foot Monster Truck" facility. That visit was a nice break away from the hospital. Back to the hospital we went...2pm my nerves were heightened with every emotion; this was a God appointment just getting the chance to visit with him. He then spent 1.5 hours trying to load the images, talking with their radiologists so we ended up not seeing his face until 3:30.

By User:Wikid77 (clarifying Gray's image) - Derivative of Wikimedia Image:Gray488.png., Public Domain, https://commons.wikimedia.org/w/index.php?curid=2945470

He  walked in grabbed and rubbed his chest and very frankly said...I'm very concerned. I've only got to see a few images but this kid needs a helmet because his transverse sinus artery is exposed (pic above as marked SIN. TRANS.) This drains the blood back down from the back of the head.

If he doesn't have protection and that gets hit; he could bleed out. What?! Why hasn't anyone else been concerned? We have, but we're just the parents with no medical knowledge except the doctorate degree I'm continuing to earn while I learn; currently working on neuroanatomy. He then tells us the tumor is stable in itself (yay!)...that the tumor is not fully responsible for the deterioration of his skull but that he has cranial dural ectasia. Ohhh what's that? How do you say that, and how is that spelled (notebook in hand)?? I try to write it down as he spells it out and can't, I've become dyslexia in the moment. He so nicely takes my notebook and writes it out. :) This new terminology has been the inside culprit causing pressure pushing out against the skull resulting in the thinning of the skull. Koda has several areas of thinning skull now that we look at it. Now we've got something else to "deal" with. He stated it could become very complicated and complex surgery depending on what he finds.

He calls in the orthopics lady regarding a helmet...she comes in and says ohhh no, I'm not suggesting to put my "institutionalized looking" helmet on him. She suggests we go out and buy something he likes off the shelf so he can design it, pick it etc. We couldn't order one because he had to have it to go back to school. When the surgeon announced he needed a helmet, Koda said, "I'm nervous. You know the kids at school will make fun of me." I appreciate this team thinking outside the medical box, having compassion for the "feelings" of a child, and trying to accomodate the best they can. #medicalsuccess

So we leave there Wednesday at 5 pm with this...we wait until next week to get confirmation of all that will actually happen but the plan is for surgery to fix the skull in January in St. Louis. There could be multiple other testing and procedures that he wants done such as another MRI, angioplasty, labs, etc. He must have time to look over all those images, and it's totally understandable. He spent 3 hours on our case with us getting an hour and a half of his physical presence in our room. Who does that? I know who ordained it! I'm so thankful for his frank-ness and compassion.

So I get home wiped out. I asked in prayer for help prioritizing all this info because I was swarming. I'm so thankful for every single prayer that has been lifted for us because they are being heard and delivered. We wake up on Thursday morning to run out to find a helmet. Quickly after 3 stores we're getting discouraged. Fifth store is Academy...while dad and him are trying on helmets, I go to look at some winter boots for him. I come back through, and somehow looked up on this shelf way higher than eye level. On that shelf sat one helmet by itself with a clearance sticker on it. I pull it down to look at it, take it over to the guys; Koda practically yanks it out of my hand. He puts it on, it's a perfect fit...he like it, and states "can we get it"? We said hold on, lets see if we can find more, maybe a different color. Of course not, it's an ordained helmet...there's not one single helmet like it in the store. $60 helmet, and we walked out with it for $17 along with some boots on clearance. #win #Godisinthedetails He won't take it off, he says he likes the pressure. #iknowafighter #endnf #neurosurgery #duralectasia #plasticsurgery #secondopinionscanbelifesaving

So last night, I decide to learn more about that new terminology of dural ectasia. I pray before researching for God to help me not get overwhelmed, protect me from things that have nothing to do with us, etc. At 11:11, I was overcome with peace because I found images that perfectly shared what I needed to understand visually. I found new information out about NF I had never heard as this new term is the 2nd on the list of associations to having been diagnosed with it. If this is truly in-fact a new diagnosis' for Koda it might also very well be the reasoning behind his incontinence and leg pain as well. We'll see...though we really don't need another diagnosis...it sure would explain a lot of things. #hopefulwevefoundananswer

So until the NF neurosurgeon calls next week, you have been updated. To God all the glory! We know your prayers are working!! Thank you so much to all that have invested emotions, time, creativity, support, finances, postage, etc to let us know we are loved!! #kodaskrew