The impossible...

has happened! The journey of 2016 has not been all I would wish for our lives, but good things definitely happened. I promise great news is at the end of this post, but let me reflect on what really went on; so that I may never forget what God has brought us through. The end of the year pushed me over the edge, and so I took a break from social media for the last week of the year to replenish. At first I thought that week went way too fast, but in another way I was wishing it to be over. We all lost a lot of people, pets, and things this last year. I realized in this time to myself that "Replenish" should be on the daily calendar, not to be utilized when someone has already been depleted to even enjoy such a time. What should be of a help today is taking weeks maybe months to recover.

So as I looked over the photos that have been uploaded this last year...I had a moment that touched my heart like no other; we really did have a good year. Let me share some of those great times in 2016.

1. Koda graduated all therapies
2. I got to meet and become friends with some fabulous people during my time working at Heartspring.
3. We traveled many states, had a great time finally meeting our "NF twin" family whom let us crash at their place while on the journey to our daughter and her husband's home in Ft. Bragg, North Carolina.
4. I got to see my first lighthouse while visiting my daughter. We got to swim in the Atlantic Ocean, and visit several military/veteran events/parks.
5. Koda got his FM receivers for the Auditory Processing Disorder...wow, what a difference.
6. Got to go to a bridal expo with our youngest daughter whom is getting married in May. Being involved in the wedding planning is so fun.
7. Went to Branson, MO for a vacation where we went to see Moses at the Light & Sound Theatre and have dinner with the going to be our youngest daughter's in-laws. Koda got to experience go-cart racing with dad against soon to be brother in law, Sam. That was fun!
8. Hubby surprised me with a birthday gift I'll never forget while in Branson...my first helicopter ride. That while so scary was so positively life changing for me in regards to facing fears.
9. We had to move...and while that was horrid while in the moments of it; God came thru. I've blogged that 30 day journey "when God moves you".
10. Koda has got to experience having neighborhood kids to play with.
11. We had several visits from the girls. Now that is when my heart is full.
12. My husband has had full time work plus overtime to support our family while it has been clear at least for now; I'll continue to work from home.
13. Koda has got to experience suiting up and being placed in an actual go-kart. Dang short legs kept him from experiencing driving the actual kart on the track.
14. Koda also has developed and enjoyed his first experience of bowling in a league.
15. We had a roller coaster of a year with learning a new eating lifestyle of all organic, no-gmo's, grassfed, cage free, free range, clean, juicing, fresh, straight from the farm buying and garden growing food. So thankful for a job that I can work from home, that supplies us with seasonal blends, receipes, oils to have easy meals at home every single day. I love Wildtree!!

I'm sure I've left many more out, but the greatest of these are the love and support of friends, family, acquaintances, and even strangers through our most difficult of times. Thank you to each and every single one of you who make life easier to endure when seasons can be so trying, unbearable, and down right mean. May 2017 bring health, love, happiness, provisions, favor, peace and daily moments to replenish. Love you!!

So....God has done yet again what seemed impossible! We got the approval from the bankruptcy court trustee to purchase the house! We got the house!!!! Happy New Year!

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!!