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!!

4 steps to NO MORE FOOD/SWEET Cravings (Step 2)

For those of you still needing or wanting to read Part 1 of this journey, please click here.

My lettuce is growing beautifully in the window! :)

Well update on Mr. K; he's officially off the RLS meds as of tonight. That means since Jan. 1st he has been taken off 4 different meds. We have one more nighttime med to go but that won't come until we go back for his 3 month lab. This leaves only 4 medications (4 dosing times and 7 pills) to go...I'm so hopeful. We have used a therapeutic essential oil from Young Living called Grounding for the last 3 nights (including tonight). He has had no issues going to sleep, he has not gotten up complaining, he has slept all night. Now with that said, here's a note on sleep disorders if you haven't read my past blogs. Even though he's in bed, appears to be asleep, and doesn't get up doesn't mean his body is deficient of sleep; good sleep called REM sleep. 

Restless Leg Syndrome, Periodic Limb Movement Disorder, Sleep Apnea,etc are real issues that cause daytime behaviors especially in kids. If we don't sleep well then ADHD, emotional, defiant, etc type symptoms might occur during the day because they are actually tired and that's how they respond. So we also know that; we're probably going to have to have another sleep study to see how bad/good it really is. With his deficiencies that we found;  he has now a full regime of supplements because unfortunately we can no longer get all we need from the food sources like once upon a time even though we've went fully to organic whole foods. 

Koda and I both are feeling on the downside tonight so I'm hoping it's not what has been going around. I know we're still deficient in our nutrients, etc...and can't wait until we do a whole family detox during Spring break. We're waiting until then because we know it's going to be hard the first few days, and trying to go to school under such circumstances so we want to support Koda as a family doing this.

So now that's been updated; let's get right to the 2nd step:

#2 Netflix & Chill ;) 

(for the uninformed reader...Netflix and Chill is the new "have sex" slang: Netflix and chill is an English language slang term using an invitation to watch Netflix together as a euphemism for sex, either between partners or casually as a booty call.) (Source: Wikipedia)

or do exercises like I do watching the educational documentaries. Wow! I'm glad I don't have any teenagers right now & have to listen to see if they're Netflix and chillin'. 

Tip: Eat before watching such suggestions. 

Be Educated with the food you eat; where does it come from? What's in it? What does those ingredients mean? So to help you out and to give you a jump start to what took me quite some time to find and get (no need in all of us waiting 42+ years to pay attention and get the right information. 

Here's the list:

Food, Inc. (Warning: some graphic slaughterhouse video's)

Food Matters

Hungry for Change

Fat, Sick and Nearly Dead

Fat, Sick and Nearly Dead 2

Forks over Knifes

Fed Up

Cooked

Spinning Plates

Jiro Dreams of Sushi

Inside: Chipotle

Super Size Me

More than Honey

Somm

I Like Killing Flies

That'll keep you busy for awhile. I'm personally so thankful that Netflix has these as part of their selections. I realize this is one of my short ones but there's a lot of information here about the 2nd step....You wouldn't read it all; so I just gave you the videos and excuse to watch. 

I've got to take of myself so I'm going to bed. Say a prayer if you will. TIA!!

Blessings,

~Yvonne

I feel like Maury...and, that was a lie! (Part 1)

Sometimes I feel like I'm just one human and there's no way to research, obtain, memorize, and hold up to all that I need to for the sake of our son. He has so many diagnosis' (dx's); Neurofibromatosis (NF1), Autism, ADHD, Restless Leg Syndrome, Auditory Processing Disorder, Periodic Limb Movement Disorder, Mild Hearing Loss, Sensory Processing Disorder, Receptive and Expressive Language Disorder. He's on these medications as of right now (removed 3 RX's in the two months which was Zyrtec, Melatonin and Prilosec, but have been thru many more including chemo); Focalin (3 daily), Clonidine (4), Mirapex (1), Miralax (3), Gabapentin (1), Ambilify (1/2).

Are you tired yet? I am. But I got to tell you...I'm writing this so maybe just maybe one more family doesn't have to do this terrible journey we've been on. I'm hoping I'm able to shed some light or be the transmitter of a light bulb moment.

Without going thru each one of the dx's in this blog...uhm, ain't (I know it's not a word) nobody got time for that; I'm going to focus this part on our first new adventure in getting healthy. The diagnosis' we are starting with here is Restless Leg Syndrome and Periodic Limb Movement Disorder. The reason I'm starting here is because if a person cannot get good quality REM sleep; there is going to be problems with behaviors that can mimic ADHD, Autism, some call being a brat syndrome, whatever. None of it's pretty if one cannot sleep. Is the diagnosis correct?...you must question that. This is just one link/site of hundreds that are an awesome resource for information; I'm not promoting or discrediting the sites, fyi. I'm not on here to gain any money, approval, or anything of the sorts.

You must be the advocate for yourself and your family.

I'm not even going to go into the story from birth up until the diagnosis as that is another blog for another time. So at Koda's IEP in January this year, the teachers had noted the decrease in focus. I said, Ok...well, we've got to go to the sleep clinic in KC then. I had already learned that daytime behaviors can be a result of not getting proper sleep. (Now mind you I have read many comments about upset parents who say; my kid sleeps! Do they really, do you know for sure they are getting REM sleep, are they tossing allover the bed, are they complaining their legs hurt, are uncomfortable, snoring or something else? I just ask that you make sure...the only assured answer is through a sleep study) I also told them the medicine dr. would not increase or change any "adhd/autism" focus medications to help with focus until we do make sure that he's getting proper sleep. So because I already know this...I call to make the appointment.

In the mean time I found out some things about sugar, insulin, and the food industry which made me livid (see my previous post on my new finds here). Mama Bear kicked in and changed everything and Papa Bear proudly supports the new life. Also while waiting...I was finished at my temporary job the first of February; which gave me time to research even more. I may not have a paycheck physically coming in, but I'm saving $ with this new lifestyle and also our lives which is priceless.

Appointment time: I just plainly start off with school's concerns and the lack of sleep Koda had seemed to be getting (he was more restless again). I also shared my concern about how I also know now since Papa Bear was also diagnosed with RLS that the meds to treat it are the type you become addicted to and need more for them to work. Ughhh! I told the dr. I don't want to increase the dose, I want labs done to find deficiencies in vital nutrients. I knew Iron deficiency was one that could be the culprit of RLS. She was happy and agreed, as she didn't like the med but it was our only option at the time (uhm no! Now I know that labs are the first thing that should happen to find deficiencies)...now mind you Mirapex is not approved by the FDA for children (not that any of prescription shouldn't be questioned if it harms more than it helps) so she gladly was ready to help decrease Koda off that med then Gabapentin is next.

Her note was this...It's going to get worse before it gets better. :( The behaviors will increase. The leg pains, cramping, bugs running around will get worse. (So our 10 almost 11 year old gets to go through withdrawals like that of a drug/prescription addict). Momma Bear wants to clean him out, but must admit to the guilt that I feel for having allowed this to happen! He's been on medication since he was 3, it's time for us to get a baseline again.

So we go for labs...the results; Vitamin D deficient (most Americans are), Iron deficient, Calcium, Potassium, and.... I asked for a check on magnesium...guess what? She couldn't do that lab because there's not enough scientific evidence showing in the "medical files" that it has anything to do with sleep. Ok, here's where I grin because I know she only follows exact protocols within her practice. I shared with her that I had a link to "scientific notes" through the National Institute of Health. That got her attention and I got the labs for that too.

What I found on my own was amazing through this website about Magnesium that everyone needs to read. I love how in this journey one thing then leads to another discovery...so I found out that not only does Magnesium or the lack there of cause cramps, tremors, and constipation (each Koda has) it coincides with Calcium deficiency and that the muscles in our body releases that when squeezed. Well guess what? Koda begs for pressure especially at night...he wants squeezed. Hmmm, coincidence I think not; it's his body asking for calcium.

After researching these deficiencies of his...I found more information that just flat makes sense. It is clearly a lack of proper nutrition (and it's not because the boy doesn't eat or that he doesn't choose good foods; loves broccoli, greens, fruit, meat). His body can't absorb the nutrition properly when his gut and kidneys are damaged from the prescription drugs. So we are are on a journey to clean out the gut.  I so should've listened to our wholeness chiropractor back when he was 3; he diagnosed Koda with Leaky Gut. I believe him now. I started the healthy life back then but the lies of the world that we can trust our government, our food supply, our doctors, etc and in the moment was so much cheaper (lie...long term affects on health and lifestyle) to use prescriptions because wholeness chiropractors are not cheap and society said; this wholeness, holistic, organic, approach was "crazy extremists"...well if that's the case we're jumping on that band wagon. Call me CRAZY!

I feel like Maury...and, that was a lie! I just have repeatedly said that over and over since I decided to research and advocate for more than just IEP's, therapy, etc. We want to thrive not just survive. I know without a shadow of a doubt. With great sleep, a healthy gut, exercise, organic clean nutrition (be careful if you garden this year; make sure your seeds are organic as well), and supplements our bodies will heal themselves. We are fearfully and wonderfully made. :)

He will slowly go off the prescriptions as we add in all the vitamins, etc. Now I will say, I also have added in therapeutic essential oils into this because I've seen them work. My husband even has had great results. We are shopping for only the best of the brands of vitamins so we can get the best absorption rate; no preservatives, no gmo's, organic, clean vitamins. READ the ingredients and labels please!!! Iron must be given w/ Vitamin C (organic orange juice is what we decided) for it to absorb correctly. See it's not just as easy to go to Walmart and pick a vitamin. Dang I wouldn't buy a vitamin from Walmart...they are full of sugar (whole other issue) and other not very good things. You are lucky if you absorb 1% of those. Don't waste your money. Until next time...blessings to you.

Please comment here and let me know you're reading, share, and most of all I pray you take something beneficial away from our journey. Embrace some joy! Here's to your health! Hugs!!

~Yvonne