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!!