He said, it's just as nasty as cancer...

at some level it's worse because its so complicated. Those were the words from Koda's new plastic surgeon. At some level this comforted me because it let me accept this just isn't a hole in his head that needs to be fixed. It's deeper and way more complicated
than that, there's more to it than just a repair. There's a future that says this could happen again and multiple times. There is not one person alike when it comes to the outcomes of each diagnosed with Neurofibromatosis.

He doesn't appear to have anything wrong

Koda has hit the "rare" part of Neurofibromatosis because NF in and of itself is not a rare disorder. There's no cure at this time though research is showing positive results for problematic growing plexiform neurofibromas (that's just one little slice of one symptom). There's nothing we can do about it, but wait until the next thing happens. It drives me crazy not knowing what all is going on inside my son's body. I've taken life and my health for granted up until this diagnosis...we just assume because we get up, walk, see, hear, do our thing...we're all good. Yeah, that is just not so. In the flash of a moment...bam, it all changes.

No we're not on a death bed at this moment, but that is a very realistic possibility for any of us at any time. Just because we don't see it or feel it doesn't mean there's nothing negative going on. So with every pain, complaint of discomfort; my anxiety jumps thru the roof to "what's going on" with my baby. It doesn't stop, and these past few weeks even up until today...he's got more symptoms of pain and now an unusual growth about the size of a dime in the middle palm of his left hand. He discovered this "new" spot yesterday on our way home from St. Louis. Seriously...what's a mom to do?

So we've made 6 trips totaling over 3600 miles (4 to Kansas City and 2 to St Louis) since Nov 2nd, and we're no where close to done. We go back to Kansas City next week for a MRI of the spine to rule out tumors there due to symptoms he's having, and I'll be getting a call this next week to see what's next in regards to St. Louis. We might have more testing/scans such as an angioplasty right before surgery. We still have a lot to discuss with the neurosurgeon.

Puzzle piece hole is fitting if you know us at all.

So this previous St. Louis trip was for the 3D scan of Koda's skull so they could use for measuring the repair. We were given a suggestion of 3 types of possibilities of the material used to fix the hole. They have to have options because the scan tells them a lot but never tells everything. They'll not know the entire story until they get in there. The NF team did discuss that their concern was the plexiform neurofibroma in his neck is of great concern, and they told the surgeon's "NOT to touch it because they don't want to piss it off". Whew! We've been told forever by each NF doctor we've ever seen to leave that thing alone...and since it's stable; now is not the time to aggravate it. So, they wont. Thank God because I was really concerned of the possible massive bleed out if they had which was discussed by the first set of neuro/plastic surgeons we seen. I'm so glad I went with my gut to take him to St. Louis and not take the first thing thrown at us as the final answer to fix this issue. God has our backs and even more so our son.

Just like the neurosurgeon, the plastic surgeon was compassionate, very honest though he hated saying some of the stuff in front of Koda. I want Koda to know what's going on...it's his body. We realized real quick how much pain Koda doesn't complain about. With tears welling up in his eyes as the surgeon was feeling around; I asked him does it hurt, he said yes it does. Koda, you have to tell us when you hurt. The surgeon felt so bad. My heart cried to see my baby endure like he has. He's nervous and scared, and has every right to be. The plan is to cut over the top of the head from ear to ear in a zigzag style. They will not be removing any skin/hair and skin grafting in new like the 1st set of surgeons said they would be doing. Yay...he won't have a permanent bald spot (at least that is not the plan). The 3 types of material choices; his own skull sliced in half from the top, donated skull bones, or a plastic prosthetic. The attachment will not be steel screws, etc but a material that will dissolve (takes about a year) on it's own after healing. We are confident in what has been discussed so far. Again, much to still discuss (so I clearly understand) with the neurosurgeon.

Koda is not sleeping, we hope to find the upcoming MRI to answer some of this; otherwise back to another sleep study and meds again. Everything is a domino affect from the lack of quality sleep.

I wish I could just list out sometimes all the other distractions and storms overlapping us right now, but that doesn't benefit anyone. I need the storm to calm down so we can focus on the important issue, and that is getting this boy where he needs to be when he needs to be there. Believe me when I say that every nasty dart that can be thrown is being thrown in all areas. I really feel as if I'm drowning in the "other" stuff. I'm ready to go back to "school" being our biggest struggle. Priorities change so quickly. Keep us in your prayers and thoughts, thank you so much for reading our journey!!

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