Mount Up, Keep your fork, the best is yet to come...

I wish I had a better update for you, but I really don't. I have had an amazing experience tho though my roughest week yet.

Last Saturday, I walked out into my back yard & looked up to the sky asking God, "what do you have for me today?" With goosebumps and the deepest of emotion (tho saddened that you can't possibly experience this through just words)...a seemingly 8 foot span of wings came from behind me and launched into the skies above. I could see the details of the white hair on his head, the yellow beak, and the eye of this large beautiful creature we call the bald eagle. The most breath-taking moment to say the least...and the words "mount up" was whispered into my being as I recited the words to myself from Isaiah 40:31. I always get what I call a "word" for the season to come...and this is it. I am ecstatic to see what is to come. History in our family has proven it doesn't come without trials and tribulation, but the after...the best is yet to come.

Sunday, our pastor presented a message by handing us all plastic forks. Sharing the story many of you have probably already heard about the lady whom was given the notice that her life was coming to an end. She met with her pastor to give him the details of what she wanted at her funeral. The songs, Scriptures, etc... and that she wanted to be buried with a fork. She said, you know when you go to dinner & the waitress tells you to keep your fork...why? Because the best is yet to come...it's the dessert. Knowing in Faith that no matter what is going to happen next, the best really is yet to come when one has eternity coming. If you're alive, your story isn't done & He isn't done with you yet...grab the fork!!

Monday, I head to the PCP to find out the other details of my MRI findings as the ophthalmologist stated it was out of his speciality, but that I didn't have MS like he was questioning with my symptoms. That last update is here. There's several words I'm going to put here, but nothing is yet confirmed or has been discussed in detail at the time of writing this. I definitely have Optic Neuritis, and that is why we are on the search to find the root of it. The doctor handed me my report, and said...I'm sorry but I just don't know. We need to get you to a rheumatologist and neurologist to go over these findings. He looked me straight in the eyes and said, "have you been diagnosed with lupus?". I said no, he stated that I have the significant sign of the butterfly rash on my face. I said, ohh I was told I had rosacea...he said, I think you've been misdiagnosed. Let's get some lab work done to see if we can rule that out. An ALA test, along with others. This blood work is what I'm awaiting as I type. Along with this rash, the MRI findings consist of a 7mm nonspecific matter in the mid-brain, dural ectasia of the brain (this is what caused the hole in K's skull), mild sinus disease, psuedotumor celebri, empty sella turcica, and the need to rule out papilledema. He would get me scheduled & let me know the lab results.

On the ride home, I was reminded by a small voice..."Mount Up"!

Tuesday, I was excited for this day because this was the day to go back to the eye dr to get my new prescription for "getting older" bifocals. I just knew if I had optimal level before me, it would relieve some of the stress I was having to put on myself just to function daily things. This day ended up becoming the worst day yet. I felt what is like a nerve coming out of my brain running down my spine, twisting & squeezing it like a boa-constrictor. I had went almost a year without any migraines doing my daily proactive regime to keep them at bay...this day would be the day that didn't work. I had a women's group to lead after the appointment, and I could barely drive much less participate. I couldn't order my glasses because I couldn't stand there long enough in the light to look at any much less think about the details they needed to discuss. I left, found a parking lot and prayed. I said good grief, if Jesus could bare the cross...the least I could do was show up for these ladies. I showed up, handed off the reigns to another to read; and their fellowship & love got me thru. I crashed in my dark bedroom for the next two days. The pain in my back, the numbing & burning of my face, the dizziness, and I hear...Mount Up!

Wednesday & Thursday are a blur really...until Thursday evening I had found some relief. Enough that I got to go with my husband to kick start another fellowship group for men & women at church. Don't think I don't know the enemy is also at work here trying to detour us/me from doing what we know we're called to do. He'll throw marriage darts, kid behavior darts, financial, emotional, and now physical darts to detour us. Nope, I'm not having it!

This morning...I've got ice wrapped around my neck and anointed (oil running down the head) myself with M-grain on the side that hurts & Stress Away on the side that doesn't. I'm able to pull off this blog with that, so this morning I'm in a better place. This has been so random & without rhyme or reason. Until I know more...every moment is unpredictable at this point.

Thanksgiving News

He really has stepped up beyond the necessary!

While enjoying the weekend with my daughter and son-in-law, I turned back from the front seat of the car to look at her, and I experienced the greatest pain (what I would call a pulled tendon) behind my left eye. Immediately my vision was impaired, but I didn’t realize how much until I tried to read anything containing words/letters. We had arrived back home, and when I went to follow a recipe for dinner found that I couldn’t read the instructions. The pressure had built and the pain increased over the next couple days and with my ever so restricted vision, I called the optometrist first thing Monday morning. The one I originally go to couldn’t get me in until Dec. 7^th. I tried to research another, with much frustration because I couldn’t see to look for such online. My introduction to using Google voice search began. I was able to get the info & have it even call the number for me. WOW, technology really helped me out in a desperate situation. This doctor was able to get me in that day, so I went. I was able to drive, but not read signs, etc. Everything was so distorted and blurry, with that said; I have always had astigmatism and I was just assured that was part of the reason along with knowing from the last eye glass prescription that I was soon headed for bifocals. Hello 40’s…just one of the many developments is enough but it seems they tend pop up their ugly heads unexpectedly. Let’s just say I didn’t realize how many things have words/letters nor how much one “reads” throughout the day.

The testing came back with a definite need for bifocals but that wasn’t the issue that caused me to sit behind those different lens’ that day. One test, led to another, and yet another. The final one printed out a picture of my optic nerve which showed severe inflammation, so the Dr. started asking other questions about my gate/walk, dizziness, fatigue, muscles, etc. I explained some things that had been going on (that I never really took as a need of concern). He said, you are showing all the signs of MS (Multiple Sclerosis), and this inflammation is one of those…so I need to order an MRI ASAP so we can get you on some steroids for the inflammation. My first thought…I know what steroids do to me, and I AIN’T (English majors please rest as I did that on purpose) doing it because the side effects outweigh the benefits. He asked who my PCP (Primary Physician) was, and I wanted to answer Jesus…but I didn’t. I said, I don’t have one since we moved. I’ve had no reason to go to the doctor, so I never established one. He looked at me in a weird way, then asked who I would like to attain as one because he needed that to order the MRI. I just said, who do you suggest? I don’t know. He referred me, and even called that doctor to see if he could take new patients, etc. I’m pretty impressed with the care, detailed, and bedside manners of this optometrist. He came back with the info that I needed to stop by this other doctor’s office to pick up the new patient paperwork. I laughed, how the heck am I going to be able to read it to fill it out. I got the requirements done with the help of the receptionist, so the MRI got ordered. The possibility of being diagnosed with MS didn’t scare or concern me in any manner…it would have explained some things and I knew that it was just another story of God’s glory to be revealed.

As soon as I got home I wanted to research all about it but couldn’t. That right there has been the most frustrating of circumstances because that’s just what I do. I read, research, and read some more about all things pertaining to human life because I love it. The part that hurt me the most was when I would go to grab my Bible, open it, and almost cry because I couldn’t read it. My ever so loving husband was greatly concerned with the news, and was ever so patient with me while after a hard day’s work would come home to a wife needing answers…so he’d research the topics for me. This is so NOT his thing. I am so privileged to have such as blessing as him. He posted on my social media to give people a heads up of what was going on, answered people’s questions until it got to be too much (I’ve still got like 40+ FB messages unread at the time of this). I’m not ignoring you, I just don’t have the visual ability to read any of it. Matters of fact, I wouldn’t be writing this without it being zoomed at 500% and using voice to text.Thank you, thank you all whom have been so concerned, in prayer, called, texted & messaged to find out the updates…I love you! There is no doubt that I am loved.

I went for the MRI. Thank you for those whom prayed for that as I’m highly claustrophobic and IV sticks are the worst for me. I prepared though by making sure I was overly hydrated (hello toilet we are friends) and drowned myself in all that makes me calm & happy. Your prayers along with these added precautions…the IV went in on the first stick, and I fell asleep in the MRI so it can’t get any calmer than that. (They didn’t have any of the cool added technology like I’ve seen at other hospitals, fans, earbuds, movies to watch while in there, etc., so it was just me and that loud banging long donut).

Now wait…the waiting room whether at home or in the office seems to be the most time wasted in life. Waiting on results, waiting for a test, waiting for the appointment that was supposed to be 30 mins ago, waiting on the nurse, waiting on the doctor, waiting, waiting, and more waiting. Today (Wednesday, November 22, 2017) was supposed to be when I went to the new doctor to establish care & get the results of the MRI (that I found out yesterday was completed and read on Nov. 16^th)…I growl a little. They called me yesterday to say the dr. is leaving town for the holiday and I’ll need to be rescheduled until Monday, Nov 27^th. I growled a little more and increased my volume at this response, asking if anyone could at least give me the results. They said they hadn’t seen the report nor that I was even in the hospital system. I called the eye dr. next. He quickly got off the phone to find out what was going on. He called me back directly from his cell phone, first saying he apologized the hospital had not yet delivered the report but that it had indeed been completed since the 16^th. He let me know that I have some issues that was detected by the MRI & that could very well along with the need for a new eyeglass prescription be the cause of my vision loss and distortion. I will need to see the other doctor for that, but that I do NOT have MS!!! Thank you God! Thank you for your faithful prayers! I’ll keep you updated as this progresses with the other information I received.

I have had moments of restored vision enough to text my daughters or husband, but only moments. Thankfully the pain has dissolved, but the pressure is still there if I try to read too much. The strain to focus on reading really does cause much discomfort. I miss reading, and had recently discovered Audible thru Amazon & love it, but let me say that I’ve yet to find any audible bible versions where the narrator wasn’t horrible to listen to. Good grief, if they believe He sounds like that…they don’t know my God. He has a personality, laughs, and has emotions. Those people are “BORING”!

So until I get new glasses (which I won’t be retested until Tuesday, Nov. 28^th & given the prescription) I am going to continue to limit my online presence on social media. I will not be attending to FB messenger for sure, so if you have a message for me then please either send a message to Rick or send me a text & he’ll read it when he is home…or you are free to call me too (I cannot call you back unless I have a moment clear vision…or until I can get my “not so smart phone” to call you using voice. I’m trying to get that to work.) I have so much that I can't wait to share about this journey already. 

Happy Thanksgiving! Release the bitterness, envy, strife, un-forgiveness, and pride…Enjoy and love on those crazy family members, and don’t miss the opportunity to share the Good News of Jesus & Freedom through Salvation because there might not be another moment for such. Time is short and unpredictable. You are so appreciated and loved beyond measure.

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~Blessings!

The flight, appointments, and... (Pt 1 of 2)

the IEP. On January 9th, we woke at 3:30 am to make it to the airport in time for our 6:30 flight to St. Louis. This was a follow up trip to the NF clinic and Neurosurgeon appointment to discuss multiple things along with the details of surgery. Koda has never be on a plane before tho he did get his first helicopter ride as well as mine this last summer. The security check-in process was a breeze, and quite funny to Koda because I had to take my shoes off and he didn't. He had a touch of anxiety when he had to put his weighted dog through the scanner which meant "let go" and hoped it came out the other end. He didn't have much patience with that process, but did make it through without a meltdown.

So there we sat...2 hours until boarding. What am I going to do with this child for two hours at 4:30 in the morning and no medication to be given until 8am. First, we checked out the coffee shop to be utterly disappointed in what we had ordered. I knew the Ipad had to last until we got home (assuming midnight since we were scheduled to land back home at 10:30), so I took advantage of the charging stations and allowed him to play on the Ipad while waiting. We took breaks to go to the bathroom, look around at the gift shop, and look at the planes out the window.

Then it was time to board with no incidents. He did wonder if he'd get a window seat and had hoped for one. He got it. :) He listened fully to the instructions by the attendant, by even getting out the pamphlet to read about emergency evacuations with the life boats, etc. This told me he had some concern about safety...so I reminded him of the helicopter ride and told him this would feel much different than that taking off and landing.

The take off..."whew, we're going fast. Ohhh, my stomach as we lifted off.", he said. He reminded me real quick, mom we forgot gum...we were supposed to get gum (he had been told this for his ears, but didn't know it to be fact that it was needed). This brought on a bit of anxiety, and I just said, "well, we can't turn around now". Asked him, what are you supposed to do when you are out of control in a situation and cannot do what you want? He said, "take a deep breath, be glad I have a supportive adult with me, and pray". I replied, "Perfect, and I'll pray with you". So he watched out the window as the city got smaller and smaller, he watched the wings, and questioned some of the shaking during turbulence (it was a really windy day). Overall he did fabulous. I couldn't have been more proud of him, his behavior, and attention to all that was around him.

Only what seemed like moments into the flight...we had an emergency on board. A few seats behind us a passenger had become unresponsive, as the attendant was yelling out to everyone asking for a nurse or doctor on board to come assist. I thought to myself first that ohhh no we're going to have to land, but was quickly interrupted in my thoughts by the sweetest voice beside me say, Momma...let's pray for that person right now. I nodded my head in agreement, and he proceeded with the prayer. I cried because I was proud of how quick he responded. Then, continued to cry on how disengaged I was from empathy and how self centered I was. Finally, because the words that only a confident child could say in faith.

We didn't have to make an emergency landing. When it was time to land, the pilot came on (that made Koda's face light up) to let us know that we would not be exiting the plane, but that the paramedics would be coming on to assess the passenger first. Landing gear came down, and Koda watched with amazement how the wing flaps came up to help break our speed. He said my ears do hurt, so can we please get some gum before we get back on tonight? I told him yes. The paramedics came on, assessed, then asked passengers to exit so they could get the sick passenger through the isle. The paramedics had the gentleman in a wheelchair pulled up to our seats so we stayed seated while they got him off. We told the gentleman we'd continue to pray for him, he smiled. I'm so thankful Koda got to experience a person being completely unresponsive to being responsive because then He knew he'd be okay even though he might be sick. Then we got off.

Now the anxiety hits me a bit, where's the car rentals, where's the bathroom, where's ...ohhh, thank God I don't have to go deal with luggage as we only had carry on's. We find that we have to be shuttled to the car rentals, so we get on the shuttle and go. Koda again excited to be the only ones on a shuttle bus, so he can direct the conversation with the bus driver. He takes those opportunities often as he has a lot to say (wouldn't know where he gets that from).

I had never rented a car before, so I was hoping my husband had all this lined out. Sure enough he did...and it was a NICE car. I go to plug in my phone to charge, and realize I had left the charger in my car. I didn't pack it, it was one of those last minute grabs that got thrown up on the dash. How in the heck did I forget my charger? Koda's Ipad charger doesn't work for my Android phone, so I was a bit frantic. The Ipad didn't have a internet connection so couldn't use that. See it was seriously at 3%, and I was in a town where I didn't know where anything was. I couldn't even get to the hospital if I wanted to without GPS. Where the heck is a map? Find a gas station and buy a charger, I thought. So, that's what I did. Well, it was a cheap thing that didn't work really. It couldn't keep up with the GPS on...so I hurried to find a local drug store, Best Buy, or whatever. Found Walgreens...yay, got a charger. Whew!

We are in St Louis at 8:30 with no appointments until 1pm. I gave Koda his meds and we headed to Science City. I will post all the pictures taken from the trip in an album on Simply LOLA Facebook page tomorrow. It was fun, interesting, and Koda got to build a dinosaur at the Build-A-Bear workshop, in-which he named Ripper. All was good. We headed to the hospital and with the first appointment being much of a disappointment; I needed to take a break and chill. So I took Koda to the center lobby of the hospital while between appointments, and let him play while I read.

Second appointment was worse, and this was with the neurosurgeon. He walked in, said "I'm not sure why you're here...I don't have anything for you. I'm glad you had another appointment." Ohhh wait a minute, no we're here to discuss the surgery. I have questions. I know what the plan is. His body language told me quickly while he was looking at his pager while stating he was on call; that he was going to leave the room with us discussing nothing. I said, but what about the dural ectasia, which plan are we going to finalize, and for goodness sake no one has showed me any images. He then quickly became the man I met the first time. Compassion set it, he grabs the computer, and says "here let's look at them". He showed me what the dural ectasia had done. :( What can be done about this, he looked at me and said, "nothing can be done". We don't understand it, we don't know why it happens, all we know is it is uncommon but has a history of showing up in NF patients.

He allowed Koda to take some pictures of the "scary/horror faces" from the MRI scans which will also be included in the album posted to FB. We did decide that plan C which is the final out of 3 different plans would be what we'd go with. This plan includes ordering the implant to perfectly fit the hole. The implant will be attached with a dissolvable screws/joints that will take about a year to completely dissolve. This is so there is nothing to affect with future MRI scans. Koda already has an adult size head, so we're hoping this implant will be able to stay with him. It is possible that Koda's head could continue to grow leaving the implant as a floater, which would cause for another surgery to replace. I still left this appointment very unhappy.

And the rest of the story...

(Part 2 coming tomorrow)

I want off this ride...

...as much as I love rollercoaster rides especially the twists, turns, flip upside downs, and speed; this ride I want completely off. I don't like any of it, as it is literally making me sick to my stomach to the point of needing the trash can. I'm ready for the ride to stop but apparently it has no breaks, no leveling command, where the heck is the end where we slow down and are on a more level equilibrium? This has been running only for the month of November, and we're not done with the month nor are we done with doctor appointments which means there's even more information to process. I'm trying very hard to be the little train that could...I'll not lie, it's hard as hell right now.

If it wasn't for the enduring friends/family in which have embraced us during this time in prayer, text, cards, calls, and just loving on us; I couldn't do it. One sweet friend said something very true to me right before we got so many tests/results, "for you 6 weeks has proven to be an eternity". So much happens in 6 weeks for us...so I'm believing in a "rest period of confidence in a plan" to be coming real soon.

If it were just one thing...it would be more than enough. We've got the stuff going on with the house (which I'll update that at the end of this), we did the CT scan, we did the PET, and last week we had the MRI and Neuro/Plastic surgeon appointments. Here's my update on FB regarding the Neuro/Plastic appt:

"Here's just a summary, this is not a definite plan because we have not taken all the information to the NF specialist's in St. Louis. If it was up to the neuro and plastic surgeon's: we will be having surgery to fix the skull (the material in which they want to use we are not happy with...thankfully there's other options). Here's the negative...they cannot fix the skull without removing some of the tumor (up until now; it has been highly suggested not to touch it surgically and many have refused to because they grow back and the risk of location). They promise they will be no where near the carotid (in which this tumor engulfs and deviates). This type of tumor also will most likely have a lot of bleeding...so 2 hour minimum, but depending on the amount of blood could be up to 4 hours. They suspect he will have to have a blood transfusion if not a massive transfusion. I'm sick to my stomach writing this. This tumor has entwined itself into the skin, so this means there will be a removal of skin/hair and a skin graft done...so no more hair, etc on that part of the head. :( We had the good news that only a minute tumor tendon has actually grown into the brain. The brain is significantly protruding out of the hole, as we even have seen more fullness in the last 24 hours. There's other details on the written reports I picked up today and read as we drove home that has us very concerned; but because we have not yet talked to the oncologist about the MRI results from yesterday, I will not go into detail regarding that. I've not heard from her today, tho having left a message and email....I'm assuming I'll not hear until Friday. So until I can explain more; please have the best Thanksgiving day you can. Thank you all so much for following, praying, supporting, and loving us. I'm going to enjoy my family and be ever so thankful that I have a family present & to enjoy. Thanksgiving has a little different but deeper meaning this year outside turkey, parades, games, drinks, and pies. #nfsucks #iknowafighter #endnf"

So...the MRI results; stable, lol. there are many inconclusive things that have been told to me today by our oncologist that must be cleared up through the radiologist. She promises to call tomorrow with that info as she's on vacation until then. She emailed me on Thanksgiving with some of the "stable news" which I find to be awesome to have that kind of bedside manners and care for her patients.

Here we go...He now has a total of 9 lesions on the brain, 2 of which are new (located at the left and right midbrain), and 2 that have grown significantly bigger (these are located at the left superior quadrigeminal plate and left posterior globus pallidus), there is a "disappearance of flow" in one of the draining vessels (on the actual report it says: roughly no flow signal in the adjacent distal transverse sinus at the junction with the sigmoid sinus and there is miniscule flow in the sigmoid sinus). She believes this is to be blood clotting. (What!!??, I have to wait until tomorrow about this?) The PN (Plexiform Neurofibroma) which is the large tumor that runs from C2 around left of neck engulfing & deviates the carotid and deviates the pharynx...now engulfs the jugular. It thinks it's the boss and can own and violate everything, I guess. We also found out that the putitary gland is flattened. (what the heck does that mean?) No...searching the internet is very very dangerous for emotions, the brain, etc! Medical terminology...I'm gonna have a doctorate degree before this is said and done! Just keep swimming, swimming swimming!

Along with this stuff...Koda is being referred to the NIH (National Institute of Health) in Maryland for a clinical trial in hopes to shrink this mass that is being so destructive; that the oncologist has now stated it is in a dangerous state. :( Thank God we're not dealing with cancer too on top of this. So we head out tomorrow with all the reports and scans to face the NF team in St. Louis; this new stuff and to plan surgery for the skull reconstruction that the dang tumor eroded.

So on a other note, I have fabulous news...someone has paid the attorney the $450 so we can file the motion to borrow for the house. I have no idea who did this, but we have a signing appt with the attorney on December 5th to file it. Now it's in the hands of God and the trustee if we'll be moving or staying. Isn't that fabulous?! God works wonders and in mysterious ways...again just part of the rollercoaster ride.

So until tomorrow...you've been updated!

When there is not a damn thing you can do...

...I emotionally disconnect...

so I can get the required things done. So for my readers whom don't know what's going on, let me update. Our 11 year old son, Koda has Neurofibromatosis (NF1). You can find out more about this incurable disorder at Children's Tumor Foundation. He has a large plexiform neurofibroma (diagnosed and tumor found at the age of 2 1/2) that starts at his C2 vertebrae wraps around the left of his neck, engulfs the carotid artery and deviates it, goes into his shoulder and chest behind the heart while also deviating his airway. We've been monitoring this tumor via MRI's yearly except for in 2011 it had grown more than it normally should have so we did a year of chemo. We got a 12% decrease in the tumor within the first 3 months being on Gleevac, but nothing after. At a year, the side effects out weighed the benefits, so we stopped. He had MRI's every 3 months at that point.  He has had a brain glioma that disappeared and another in his neck that disappeared...we give all the glory to God for that miracle.

Everything had pretty much stabled out since though the pain of being touched and chronic pain is just something that has always been; he doesn't take anything for that pain. Good enough that we decided we'd skip this years MRI in the summer because well, unfortunately...there's nothing that can really be done. He had no side effects that would cause us to think otherwise. Koda is a multi-diagnosed kiddo with Autism, ADHD, Central Auditory Processing Disorder (CAPD- requires him to wear receivers on his ears like hearing aids while we wear a microphone), mild conductive hearing loss, Restless Leg Syndrome, and Sensory Processing Disorder. These all do domino effects sometimes and it's hard to tell what is causing what.

Koda is very immature in his interests and play so socially it's hard to find and have friends. Tho to him, everyone is a friend. So we just recently moved to a new town, about to buy this house at the end of our rental contract, and Koda has neighborhood friends; he's never had this in his life. Life was looking fabulous until this last Friday. Koda came to me in significant pain crying and asked, "why do I have a hole in my head". I'm like, ok...let me check; OMGosh...something is very wrong, not only was there a hole I could put my adult fat finger into; the skull behind the ear seemed to be gone. Daddy Rick works weird night hours...so he was asleep; I woke him up to come check this out and see if he would tell me I was crazy. He didn't. He did however say, I wonder how long it's been like that and no one told us. We've found out things after the fact many times...so we're not too trusting on being told all we should be.

I call our oncologist after hours to have the doctor paged. She calls, it's not our doctor tho. I explain, she says she'll look at the old scans, see what they show, and call us back. She calls back...nope, she doesn't see anything that would state or show such. Of course, she does a CYA and states she's not the radiologist either. She lets me know she'll be calling our doctor first thing Saturday and for us to look for a phone call on Monday. See even if we were to go to ER...they wouldn't do a MRI because he has to be sedated, and he wasn't in a life/death situation. They only make appts for those due to the lack of availability of anesthesiologists. MRI's were the only thing we were thinking and apparently her too because she looks at tumors. We didn't think about a cat scan...which looks at the bone; so we waited out the weekend.

Monday came, the phone call came, and we had an appointment with her yesterday, Wednesday in Kansas City 3.5 hours away. I had been praying that we were crazy, and she'd send us home saying we were feeling the tumor or anything...but my gut knew better. She agreed and didn't let us leave without a CT. After the scan, she told us to leave and eat (lunchtime) and come back to the clinic to go over the results. When that picture showed up on the screen...my emotions stopped in their tracks and shut off. The tumor (these type do this) had eroded his skull from the back of the ear to the base measuring 3 cm x 2.5 cm...and the brain was protruding out. She explained that the brain had a protective lining so it was not exposed. I could tell she was being very careful with her words and then given us her plan. She had already called our NF clinic in St Louis (this is an entire team of specialist in the area of NF. When we go there, we see everyone in a day which include genetics, ophthalmologist, neurologist, orthopedics, etc). She had already scheduled a PET scan (we know she only does those if she thinks the tumor might have went malignant), an MRI, and an appointment with a neurosurgeon (this word all of a sudden doesn't go well with my soul).

We go home. Today we're called by the neurosurgeon's nurse stating that there's been a change of plans. MRI moved up because he won't see us until the MRI is done and that he wants 2 other types of measurements to take place during the MRI to get the vascular and arterial pressures, etc. This made me feel good because it appears they're going to be checking into things deeper, and it just flat makes sense. The next thing...he wants us to see the plastic surgeon as well; my mouth dropped....while I said, ok. This is getting more complicated as days go by. I'm thankful tho for what seems to be concern coming from the medical field enough to speed up, move up, and place all specialist that might be needed into this deck we've been dealt.

We have a fantastic group of support at least with prayer warriors...and that means the world. I will say that right now I want to throw a WTF/H/Whatever party as I discussed with a friend because well to be honest, that's all I'm thinking at this point. Not letting too much raw happen right now; I've got things to accomplish. Now with that said, I also feel I just want to be silent...because I could be dealing with worse, more, etc...Like a sweet friend of mine whom has been in and out of the hospital more times than I care to count with her son's young life. He's still in diapers! And while I was there at the hospital, I stopped in to see him/her in the PICU. Weeks in there, surgery, trach, seizures...and the list doesn't stop. We were able to pray with them up until the point Moose had to be bagged again. We left so Koda wouldn't have to watch an episode. So close to not knowing if this was the last time she's going to hear him breathe. My heart hurts for her, for him, and their entire family...where is her support; but at the same time knowingly being selfish not wanting to leave a minute unsure of what's next. This kiddo has been bagged 30 x plus since being in there.

My God why has thou forsaken me; is all I can think while looking upon their faces; and that is what I see
...Sweet friend; our prayers are with you and Moose. We love you so! This momma isn't going through any of that; though I will not discount that. What we are going though tho is not fair, and there is not a damn thing I can do about it. I will continue my faith, my prayers, and taking care of our son the best way I know how. Pray I don't blow anger in a unsafe place...I know the steps of grief; and this is part of grieving. I'm not looking forward to anger when it hits. For now I'll stay in shock/denial/disconnected.

Just because that face looks as if nothing is wrong...don't be deceived. You just don't know what someone is going through. Thank you for your support, prayers, and sharing our story so someone else might not feel alone. I appreciate you!! God is still good!