Forcing Ourselves to Make November a Month of Thanksgiving

So I thought I would give my thoughts on the month that is considered the month of "Thanksgiving".  Last November was anything but!

Many know Emmy's history.  She broke her arm in April, immediately starting having migraines and intense vomiting, July 15th had a seizure, which an MRI showed us that she had encephalitis, then started relapsing once we made it home in August.  We were transferred to Portsmouth Naval, where the pediatric neurologist had no idea how to handle a case of relapsing encephalitis, so Emmy went over a month and a half of hell before we transferred back to CHKD.  Once we were back to CHKD in November, Emmy had a TERRIBLE relapse on Veteran's Day, where the lesion in her basal ganglia doubled from a dime size to a quarter.  This caused the right side of her face to lose all muscle control, along with her right arm and right leg.  To top everything off, after Randy picked up the kids from a friend, they got home and Everett found Emmy's beloved cat Bellows dead.  Oh, the pain our entire family was feeling that day was unbearable.  Then, three days later, some motion came back to her face (PRAISE THE LORD), but the next night on November 14th, she was up all night throwing up like she was relapsing again.  The MRI showed that nothing was worse, but they did steroids anyway.  ALL THE WHILE, she was undergoing plasmapheresis (and later chemotherapy) and the Red Cross had her height and weight wrong, so they were taking out way too much blood to prime the machine with, so 4 out of 5 sessions, she would almost lose consciousness, even once having one of her eyes dilate while the other stayed small.  OH, that month was hell.  I have no idea how we made it through.  Everyday was stressful, painful and full of tears.  I would sit on the hard couch/bed every night and cry out to God.

So fast forward a year.  We know that each seizure has been on a date where something happened the year before.  These past two seizures were around the time she had a headache/throw-up episode, which I believe was when the 2 new lesions formed in her brain.  So we have some big days ahead of us, which I have already been praying over for the past month.

BUT have I ever mentioned how FEARFULLY and  WONDERFULLY God created our bodies?  I have done research upon research, read books on the brain (which I would have never done before) and have asked guidance from parents who have been there and done that.  I already knew seizures can actually be very healing... Well,  I just happened to call Emmy's chiropractor the other day to pay a monthly bill, and the chiropractor asked how Emmy was doing.  I told her about the seizures and she proceeded to give me a great explanation on seizures and the body.  As I have already learned, our emotions (good and bad) are stored in our bodies, in different organs, based on frequency (all energy, including thoughts and emotions have a frequency).  And to heal negative thoughts/emotions, you have to pull up those old thoughts/emotions and deal with them, which is a whole big process (we taught about it last month in an essential oils emotions class).  Amazingly, the chiropractor proceeded to tell me how our Central Nervous System does the same thing to trauma.  It will store the pain and turn that area off until it is ready to deal with it and heal; usually HAPPENING ON AN ANNIVERSARY!!!  It will pull up those areas that were hurt/damaged/traumatized and begin the healing process.  The healing process in brains is usually with a seizure!  So as I HATE seizures, I have to remind myself that God created them as a source of healing to our brains.  Seizures bring extra blood, oxygen and glucose to the brain which is ESSENTIAL in the healing process, even causing healing to be faster.

So as I sit here everyday and wonder why Emmy is NOT as strong as she was in September, Not as mobile, Not as talkative and Not as calm, I keep reminding myself that her body is most likely reliving some trauma, emotionally and physically.  I continue to PRAY that those past two seizures were enough to heal that area and true healing can begin and that extra burden of stress can be lifted (it is nothing but stress watching a child who has had seizures).  We did wean her off that new seizure medicine because it caused her eyes to click (which has to be the worse thing to look at ever) and made her look like a drugged-up mess.  I also am praying that these days of November are not something to be feared, but something to be THANKFUL for.  Emmy is still here with us!  She can communicate and remembers everything.  Maybe we have a really long road ahead of us, but God is still God and He is always in control.  He has never left us nor forsaken us and I believe that He will work ALL THINGS (the good, bad and ugly) together for GOOD.  God will be glorified through Emmy's testimony, whatever that ends up being!  

 Emmy working on the treadmill at her last PT session!  I praise God everyday that she can smile through it all!!!

A Tiny (But LONG) Update!

I really have been slacking since the last post.  We have had some crazy things happen since the beginning of September.  Emmy was doing AMAZING during June through August, especially with Hyperbaric Chamber therapy.  Her muscles were more relaxed, her voice was easier to understand, her mental awareness was right on... But then when we stopped oxygen therapy, started making her use her right arm, started having her walk again after getting an AFO made for her right foot and everything seemed to go haywire.  Her left arm started tightening, her voice started fading and we just couldn't figure out what was going on.  We even had an MRI done to check it out.  It's so weird because she was doing so well that we even planned a visit to Carrick Brain Center in Dallas and set up an appointment with Hope Therapy in Richmond. 

Starting at the end of September, Emmy started getting very emotional.  She would cry for everything.  She didn't want to do therapy, she would scream when I would put on her walking boots, she would start crying while sitting on the toilet.  The saddest part is she would put her arms up and say, "I just don't know why I am crying"!  But October 13th came and we headed to Richmond for the HOPE evaluation.  She was a MESS.  She cried the whole time there.  Two hours to get there and two hours to get home, and I was worn out!  So as we were sitting down for dinner, she started crying uncontrollably again.  So Randy took her to the living room and I grabbed her spaghetti and meatballs and fed her on the floor in the living room... And that is when is happened.  The dreaded Seizure.  Her eyes stuck left, she stiffened and got lost in that "Stare".  We gave her the home medicine and called 911.  That medicine made her throw up, so there I was covered in spaghetti and meatballs, and digging the rest out of her throat so she wouldn't choke.  We headed in the ambulance to CHKD, all the while puking, and getting irritated because the nasal medicine the med techs gave her didn't wake her up (and they didn't help me with the puking at all).  Then the emergency room administered the max amount of medicine they could give and it didn't wake her up at all.  So they went for some last ditch medicine (which they say they give right away on people with a history of seizures, which Emmy has only had 1 post encephalitis) and finally pushed IV Keppra since it was time for her meds anyway.  She finally fell asleep (we know it was sleep because her eyes went back to center and her lids closed).  That night was miserable, because of all the medicine she was given made her very mean.  The next day was no better, but she did sleep a lot because they introduced a new seizure medicine.  The EEG also showed a normal focal seizure so no MRI was done.  

((This is how she cried all day long.  We knew something was wrong because she couldn't stand being on her new Trike :(  ))

My opinion about all of this is that once again, the seizure caused a reset and hopefully brought healing to parts of her brain (like the one in April).  She still didn't return back to normal, but the crying did stop.  The neurologist "thinks" that she was having mini-seizures that weren't breaking through and causing emotional distress.  Only God knows. But then Tuesday rolls around again (7 days later to almost the exact minute) and she went into ANOTHER seizure.  This one was weird.  She was looking straight ahead for about 5 minutes before her eyes looked left.  This time, I went straight for the essential oils known to help with seizures.  (I must make a note at how awesome Ella does with these stressful situations.  I feel terrible that kids have to go through these things with their siblings at all, but she stays calm and knows exactly what to do.  I will have to dedicate an entire post to this amazing child of God!) We used them for about 5 minutes until her eyes went left, then gave her the home medicine.  We called 911 (since the last seizure lasted THREE hours) but as soon as we got into the ambulance, she woke up crying!  It was so AWESOME!  No throwing up, no additional meds, just what we gave her in the house.  We still drove to the emergency room to get her checked and thankfully she was fine.  And as I was sitting there in the ER, I realized something strange about these seizures. They all happen on an anniversary of some sort.

April's seizure- On anniversary of her breaking her arm in New Orleans
October 13th seizure-One year anniversary of the night Emmy threw up and I just knew she was relapsing.
October 20th- She seized almost to the exact minute of the week before.  

I am praying that her brain is doing a hard restart and figuring out how to work around all of those lesions and scar tissue.  And oh, how horrifying her MRIs look to the naked eye.  There is so much healing that needs to take place and so I have decided I don't won't to look at those pictures anymore, because it doesn't matter what I think, see, or feel.  It only matters what Jesus did on the cross for Emmy and what my "heart" believes.  Even though a year has passed, we will believe for miracles, hope for the best and focus on what is good!!!!

October 11th, Nike Park Pier

Moving forward we are heartbroken we did not get to go to Carrick Brain Center.  God will make a way if we need to go (which it is still on our radar).  Hope therapy is an 18 month wait, which we will most likely be moved by then.  We really don't know what to do from here.  Do we torture her (she has an itch on her neck that is amplified by the helmet she wears while breathing oxygen) by making her breath oxygen everyday for a month, just to see if the effects last longer this time?  We know the MRI was improved, but we didn't see the physical effect of that very long.  We are still doing Physical Therapy (PT) twice a week and a wonderful lady has offered to come and work with Emmy a few times a week at our house!!  That is a huge blessing, considering her background is a nurse in physical therapy!  I really don't know how to tell people where Emmy is yet physically, because she is no where near how she was in August.  But I can tell she is getting stronger after that last seizure, but is still having a hard time sitting up on her own and even loosening her left arm.  The neurologists like to call this the "waxing and waning" of brain healing.  I don't like that term at all and I really don't like to see her make such wonderful progress then go back to almost square 1.  All we know to do is just pray diligently that we see a breakthrough soon!!!  Thank you all for reading these updates and continually keeping Emmy in your thoughts and prayers!!!  

Trying Out New Ideas and Praying for Change

It has been a whirlwind since I last posted.  We received notification that Emmy could get an evaluation in Richmond and we even secured a spot at Carrick in Dallas.  But with all that is going to happen, thing keep changing with Emersyn.

If you remember us talking about trying something new called the Constraint Induced Method, where you put the strong or good arm in an oven mitt, while forcing the weak arm to work at certain tasks.  Well, we did it for a couple days and could totally see her right arm getting stronger, BUT we noticed her left arm started to get really tight and straight, even curling at the wrist (like her right does).  At this point, we also received a second ankle boot for Emmy's right foot because she points her toes all day (not on purpose) and it is causing her achilles to tighten.  So we put on that boot and YIPPEE, her right leg was walking! Because it was just so amazing, I, of course, focused on making her walk twice a day for about 10 min each time.  But the more she walked, the less her arms starting working. Her walking is improving, even having a really nice rhythm, in spite of her left toe pointing inward.  So now, here we are and she is still talking (when she stopped talking she was relapsing), but her arms won't relax or do anything for her.  We, as parents seriously feel like we lose every time we try to teach her something new.  It is really disheartening.  There is one blessing of something we did.  The Hyperbaric Oxygen Therapy worked, at least internally.  In 6 weeks, her MRI showed improvement in the lesions that are on her white matter.  Meaning the oxygen aided in repairing her white matter, which is a cable cover for all of her neurons!  I really wish we would have seen more of that healing appear physically, but I am really happy about that!!!  We will most likely go for another round of oxygen once all of her therapies are finished.

So for school this year, we decided to put her in Classical Conversations, along with the other kids.  I really feel like she needs to be around peers her own age and start to use stress management techniques (she usually falls asleep during stressful situations) so we can start doing more in public.  She is so smart and knows all the answers but I have to draw for her, trace for her, color for her and even pick her up to participate in many of the activities.  That is alright, but I just feel so badly for her all the time that she has such a hard time.  And it is so wild, because the tutor will ask something and Emmy just shoots her arm straight up to answer or participate, because her brain knows she can do it, but then when she goes to speak or move, her body won't respond.  It is just so painful to watch but also humbling because she still tries despite knowing the outcome.


So this is what will hopefully be happening in the near future.  We will head to Hope Therapy in Richmond.  They will assess her and say she can come to the 2 times a week sessions as soon as we come back from Carrick.  Hope is more of a rigorous physical therapy that works parts of the body repetitively to rewire parts of the brain. We want to do it after Carrick because Carrick uses techniques to help restore her vestibular system (inner ear/balance) and activate her basal ganglia to hopefully stop the dystonia and strengthen the right side of her body.  Both are going to be very hard for her so please pray that the therapists and doctors are merely vessels for God to just get her the healing she needs to walk and play and write again.  

I do a lot of reminiscing lately about how Emmy was just so talented in EVERYTHING.  She could draw pictures that blew her older siblings out of the water.  She could play piano by ear.  She could dance and move her little arms in perfect synchronization and movement and her little body was so agile and flexible during gymnastics.  But I think what we miss the most is her conversations.  She was so in tuned (still is) with how people feel and just had a heart of gold and cold make you feel like a million bucks.  That's probably not the best thing to do, but our entire life is still turned upside down.  There are no breaks, going out on real dinner dates, leaving the kids with Ella to run to the store (without worrying), taking quick road trips to Jamestown, none of it.  I know feeling sorry for ourselves will not make anything easier, but the entire family has been changed.  If you have heard me talk about essential oils you will understand what I am talking about next :)  I bio-scanned Everett the other day, because he is so angry a lot!  And his number one oil was Forgiveness.  I could have told you that a long time ago because I think each one of the kids are resentful.  They get no one-on-one time with Randy or me, we can't plan things out because every day is different and if when we do a night out with a certain kid, Emmy says we don't like her because we leave her behind.  I really do not know how parents of disabled kids do this year after year.  Emmy still has separation issues at bed time, clings to one parent, then treats the other like they can't do anything for her.  The stress is almost unbearable and I am praying PRAYING that the next month will show us some hope in her prognosis.  

So if you are still praying, thank you!  We truly feel like everything that happens from this point is going to have to be supernatural and completely God-given.  The healing, the restoration, the forgiveness, all of it.  Updates will happen once we get going on her therapies!  I am sure I will post daily updates in Dallas because they say that changes occur daily!!!  Hoping and expecting the best!!!

 First day of school!!!

The infamous Kevin the Cat!

If you are still invested in helping with Emmy's treatments not covered by insurance, you can visit www.youcaring.com/emmystrong  

When God Shows Up

Today I was going to write a very solemn column (that totally rhymes) about when to give up the high tales of dreaming and hoping and just start accepting life as it is.  In other words, when do I just look at Emmy and say, "All right, if this is what it's going to be like forever, lets start living without our heads in the clouds, trying to get her to walk countless hours a day, give up the incentives to crawl and every other dauntless task I do daily".  But then God showed up.

We went to the hyperbaric chamber, like we do every day, and I took the boys with me since we were going to pick up my in-laws right after.  The morning started normal, the "dive" was almost like every other dive except I wanted out like crazy 40 minutes in.  We completed dive number 25 and rushed out to make our way all the way to Newport News from Norfolk, when our favorite puppies stopped us.  A veteran brings his dogs every once in a while, and they adore Emmy.  So we played and I instantly felt compelled to just share with the guy about oils that support brain health.  He has been doing dives and acupuncture, but he is still is so foggy brained that I thought a couple oils might help him.  So after spending 5 minutes loving the pups, we headed out to the car.  The boys jumped in and I put Emmy in her seat and walked to the back of the car to put the wheelchair away and I heard the most clear sounding "church" music ever.  It sounded like a loud speaker was playing right over my head.  So I turned and there was a man, I have never seen before, just walking around.  I asked him where the music was coming from and he pointed to his little bluetooth speaker hanging from his jacket.  I told him it was such a great sound and then he proceeded to teach me about this cool thing called bluetooth and how the phone just magically syncs up with the speaker!  He then very boldly asks what is wrong with Emmy, so I tell him the quick and gritty story in 2 minutes and then he tells me that he is there putting his father in the HBOT for early onset of Alzheimer's.  I then, once again, boldly tell him about some oils that support the brain and he jumps in my car next to Everett and tells me to take down his phone number so I can share what information I have found over the past year on the brain.  And then he suddenly looks at me and asks if he can pray for Emmy.  Can I just say that no one asks to pray for Emmy anymore.  People loved praying for her when she was in a coma, just out of rehab or when she relapsed in November, but really not since then.  I truly believe in prayer and Randy and I pray daily for our baby, but when he asked to pray I instantly said yes and bowed my head.  

His Prayer.

Made My Heart Sing.

He prayed that Jesus would heal her and let her dance again.  That's all I needed to hear. Oh, to see Emmy move her graceful moves and swing her little arms in a way that only she 



 ' 'is my heart's desire.  So just as I was giving up hope, God showed up in a bold way. 

Then Emmy said, "I love that man"!  Even she loves to be prayed for!  Even if by a complete stranger.

I also heard back from the mama who said her daughter, who also suffered from ADEM, is now one of the fastest runners in her college running team.  She told me her daughter was paralyzed, lost all memory and went back to "toddler"stage.  The doctors told her to not even try to help her, the therapists lost all hope, but they DIDN'T GIVE UP.  AND Her brain NEVER HEALED.  Every single lesion what right where they started.  But her brain totally rewired itself.  Oh, the feeling of joy when I heard that.  Not because I expect Emmy's brain to not heal, but that case after case I find that brains can rewire and take over for places that doctors think, "If it's a main area (like the basal ganglia) that is damaged, there is no way it can heal" BUT it CAN and it WILL"!!  This, of course, is after the doctor Monday said I should start thinking about Deep Brain Stimulation again since her muscle tone is not completely gone.  I don't even think it is dystonia anymore.  It resembles more of high muscle tone, like cerebral palsy kids.  And I know that there is actually a few things that are really quick and not really invasive that takes care of muscle tone, so I am not even thinking DBS is an option.  

So even when I feel like I have hoped all the hope there was left to hope (tongue twister), God keeps giving me extra doses and gives me the energy to make it another day.  PT is on the calendar to start sometime in September and oxygen therapy will continue to 40 dives, then taking a couple months off and starting again.  This whole thing is still surreal and I pray everyday for Emmy to walk, talk and play again.  I don't really pray for healing as much, since I believe she is healed, the disease is gone, but now I am praying for her body to start doing what God created it to do!  Our bodies are magnificent and I am in awe every day, like today, I see Emmy do something that shows me she is still moving in the right direction.  She was laying on her tummy and pulled her legs up to her chest and pushed up with her arms, putting her in the crawl position.  For both arms and legs to move at the same time, at the same pace is amazing.  Her right and left side are so uncoordinated and I love seeing that both sides of the brain are finally talking with one another!!!  

Thanks for praying and lifting Emmy up!  She starts school in 2 weeks (along with Everett and Eli), so maybe pray for me!!! 

(June '14, right before encephalitis)

The Race We Run

Running is my prozac, my release, my quiet time that I can pray and just think clearly.  But with one child with a disability, three others that need attention, a husband who needs companionship and a house that needs cleaning, running takes the back seat.  How does one find "me time" when it seems trivial and down right selfish?  I ran three times last week.  Once because I was "kicked" out of the house and told to go run!  The other two because I feel that Emmy is getting that much better and our house is running a little more smoothly.  

Women have a hard time finding "me" time.  We always put others ahead of ourselves, which is our job.  It is in our DNA to take care of others, but why doesn't it feel good to give ourselves 30 minutes a day?  I thought it was hard carving out that time before Emmy became sick with homeschooling, but now it is almost impossible.  But I NEED it.  I crave it.  I am calmer, more patient, and less distracted when I run.  I sometimes break into a run and feel such release. I hear God talking to me, not ME always asking him questions and begging for miracles.  Listening is a skill that I have to remaster.  The distractions are deafening.  But when I run, there is nothing to distract me (besides Gumbeaux, if I take him with me).  Getting Emmy better seems to be my biggest distraction, but I am learning to finally put my attention back into "normal life" again.  Instead of one moment at a time, I am up to planning one day at a time (Lord, Jesus!)!

And another reason why I need to run is because I find myself living in fear.  Fear is the absence of Faith.  And conversely, Faith is the absence of Fear.  I have noticed that for us, we want to have faith, but fear would overshadow the unknown of Emmy's future, our future.  We weren't seeing Emmy get better and that kept us living in fear.  And what I realize now, and so understand what people go through, they just need a glimmer of hope to pull them out of the grips of fear and back into the beaming light of Faith.    And we have been seeing those glimmers of hope lately and it is giving us so much more Faith.  And the funny thing is, when we started operating in Faith and Hope, Emmy would show even more signs of recovery.  Our attitudes and behaviors really do change the circumstances around us.  Maybe I am running more because I am finally operating in Faith instead of fear!

Emmy has completed 18 oxygen therapies.  Before she started she couldn't do any of the following things:
Hold her breath under water
Crawl up our stairs
Stand, flat footed, for longer than a minute
Crawl more than one step
Talk in sentences with more than 3 words
Roll over in the bathtub and help transition herself out
She had NO short-term memory, and now wakes up reminding me what we are going to be doing for the day!!!

This is huge for us, it isn't the end-game, but it is movement in a positive direction.  It is the race that is set before us.  Others have races that may involve overcoming addictions, stopping abusive behaviors, being a better parent, being a better wife/husband, witnessing more, doing whatever is on their hearts, but ours is getting Emmy well and our family back to a place of peace and rest.  And believe me, we will not rest until Emmy can walk again, which she reminds us about every day!  

I love reading Hebrews 12 because it reminds me to have joy no matter the circumstances and to keep my eyes on Jesus.  Joy does not mean I am happy with what is happening to our family, to sweet Emmy, but Joy that all will be made whole one day.  It reminds me to set a pace of endurance, which at first we had no idea we would still be carrying around a 55 lb girl over a year later.  But setting our pace is paying off, none of us are broken. Which then reminds me of the song by the David Crowder Band.  I feel like we have been so beaten down, but we aren't broken.  And every time the clouds pass, we are just immersed in His glory and affection!

How He Loves

He is Jealous for me, 

Loves like a hurricane, I am a tree, 

Bending beneath the weight of His wind and mercy.

When all of a sudden, 

I am unaware of these afflictions eclipsed by glory, 

And I realize just how beautiful You are, 

And how great your affections are for me.

So maybe I will get to run this week, maybe not.  But I do know that we will all be running the race set before us, getting Emmy to therapy, preparing Ella for her first day of High School (gulp) and keeping the boys occupied so they don't get lost watching minecraft youtube videos!  

You can read about hyperbaric therapy at the health center Emmy goes to at www.hrhyperbaric.com or even help us raise money to pay for the rest of her oxygen therapies by visiting www.youcaring.com/emmystrong  I will leave you with the verse that reminds me to keep running and to remain #emmystrong!!!

Hebrew 12:1-2 Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, 2fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God..

Emmy had some much needed "friend" time last week!

Hyperbaric Oxygen Therapy...

Our bodies need three things to survive: Oxygen, Water and Food.  Most things in excess are not good for us, but for some reason giving ourselves doses of 100% oxygen makes our bodies create new pathways for blood vessels and allows our bodies to heal quicker. (We usually only breath around 23% oxygen)

The day we really decided to do this therapy, we also decided just as quick that we didn't have the money.  All the money from the first fundraiser was spent on getting Emmy a stroller, necesseties around the house like bars to hold on to while she sits on the toilet, a new car seat, etc.  But just as soon as we decided against it, the mom of a couple of teen girls who felt moved to do something to help Emmy, called me.  She announced that she was sorry it took so long to get us the money from the pool fundraisers, but her daughter and friend would be bringing over $1000.00 dollars!  I was so shocked that 2 girls managed to raise $1000 and almost was speechless.  Talk about God acting quickly!  So her first 9 dives were paid for, so we set up an appointment with the doctor who oversees the hyperbaric therapy (that was also $100).  He said she was fine to go into treatment, but I was still worried about that genetic test we had been waiting for for over 5 months to tell us if the encephalitis was from a mitochondrial disease, which is incurable (according to doctors).  BUT as soon as I walked out of his office, Emmy's neurologist called to tell us her DNA is perfect!!!  That was God again!  So after manna rained down from heaven and my fear was squashed by a single phone call, we knew that we just had to put Emmy into oxygen therapy.  

The first two treatments were rough.  The helmet has a rubber seal that touches her skin and she has this constant itch that just won't go away, so with the two factors put together it drove her NUTS.  So after tears and a lot of itching, we made it!  We met a wonderful Navy man who was trying to speed up the healing in his leg, which was almost lost due to a training parachute jump in Arizona. After much analyzing, I think he was a Seal, but I dare not ask!  I have come to find out many Seals use this therapy for TBI, PTSD, etc.. But once again, I dare not ask any particulars.  I do make it quite known about Emmy's reason for using the chamber.  I kept quiet for the first couple of days, but when someone asked how the chamber was helping her autism, I felt I MUST explain why she barely talks, laughs like a straw being pulled in and out of a McDonald's cup and can't walk.   

What we did notice after 5 treatments that Emmy was standing balanced much more.  I also started reading The Brain That Changes Itself which gave me more ammo into how I should be doing Emmy's PT at home (we quit PT and OT in June).  I read an absolutely inspirational story about a stroke victim regaining his entire right side just by his son starting him crawling and doing basic motions over and over.  So as I set Emmy up at the couch with a saucepan filled with marbles, I told her to just play with the marbles with her right hand. Well, the girl slid off the couch, put the saucepan on the coffee table and just stood working her right hand!  Her muscle tone is so strong that standing on her own never happens, because she is afraid she will fall over.  Her toes go into an instant point when she concentrates on doing anything.

The weekend was tough because we took her off melatonin after finding out giving anyone melatonin causes the pituitary gland to stop making your own natural melatonin.  We also started her ween off of prednisone Sunday.  She will take 5mg prednisone every other day for 14 days, then drop to 2.5mg every other day for 14 days.  We try not to be fearful, but the past just keeps us on our toes... But after Monday's oxygen therapy, Emmy slept so well on Monday night I thought all is well!  After Tuesdays therapy, I took the kids to the pool.  Emmy blew Ella and me away!  The girl was able to stay in a kneel position without falling over.  She walked a few steps leaning against the pool wall, crawled up the pool steps and even pulled herself out of the water.  Then, as I am in the 10 foot end watching Everett do a honest to goodness DIVE off of the diving board (with a cast, none-the-less), Emmy decides to let muscle memory kick in and pushes off the wall and goes into a swim posture!  Thank GOD I had her and pulled her back to the wall!  I am blown away at her determination.  She tried the entire 2 hours to go under water and hold her breath!  She succeeded quite often!

But then Tuesday, I have to note, she was pretty sleepy in the chamber and slept about 30 minutes.  Wednesday was even worse.  She slept in the chamber, slept part of the way home, then slept on the way to PT, then slept on the way home from PT.  Sleepiness SCARES us pretty badly, but she definitely hasn't lost any  muscle function.  BUT just to be safe, I googled side effects of weening off prednisone.  Thankfully every site said "extreme sleepiness".  I also told her neurologist, but he said she really shouldn't be having such side effects, so we will see how she does tomorrow.  Nothing goes normal with Emmy so we keep our antenna up all the time!!!

So all in all, we want to keep up with all 40 chamber visits.  Forty seems to be the magic number because that seems to be the most effective in creating new vessels.  Thankfully, family has also donated money to pay for more visits, so we have up to 25 paid for!!!  God is so good and I know that he will provide for the rest of her chamber visits.  We may start a GoFundMe page because we just got notified that the Trike we need for Emmy's rehab was denied by Tricare, but the charity we were referred to REQUIRES 2-3 DENIAL letters from other charities first.  REALLY?  You're a freaking charity!  That totally doesn't make sense.  So I emailed one charity I know of and hope they can help Emmy.  I also hope everything moves quickly because she needs to do exercises that works both sides of her body in a rhythm to rewire her brain.  Everything just seems to be so hard when it comes to this little girl of ours!!!  

I am trying to make it a priority to keep everyone in the loop with her progress and will try to dedicate Sundays to updates, but I never promise anything! I am out of the house from 9-1pm every day!  The house is nuts, Ella babysits more than she probably wants to and I have no time to even think about working my Young Living business, which keeps growing exponentially!  

PS  A social worker came to get Emmy signed up for Medicare or Medicaid (I can never remember which one), which will allow us funding to hire someone to come in and give me a break!  Oh, did I say there is a 2 YEAR wait list for that???  But in the mean time, I can sign up for another waiver which is through Social Services and can take up to 4 months to get funding to bring someone in and possibly let Randy and me go on a date!  That would be nice!!!  

PSS I want to thank the few people who call me and actually ask me how things are going! I love adult conversation! I also want to tell God thank you for working through my friend who just happened to send me flowers on the SAME day Everett broke his arm.  She literally said it was a God thing!  I want to think of it as God letting me know that just because Everett broke his arm does NOT mean he will turn out like Emmy and that He is still in control!  

PSSS Okay, one more note!  I was on an ADEM website and finally was given some words of HOPE!  I was telling someone the therapies we have done and how Emmy is still severely physically handicap.  This lady, out of nowhere, tells me not to lose hope  because her daughter, age 12, had ADEM with huge lesions on the brain stem and basal ganglia (like Emmy) and was told she would NEVER walk again, BUT she is now 20 and the fastest Cross Country runner on her college team!!! Oh, the goosebumps and joy I felt.  Sometimes I think that just from that one story of hope, my thinking changed and that is what made Emmy's muscles work better!  Seriously, who knows what is making her better because so many things are happening at once!  Prayer, large doses of Omega 3's, detoxing her body, increasing good fats, Hyperbaric Oxygen Therapy, positive thinking and lots of good therapy at home!  

PSSSS Okay, so we finished 10 visits of HBOT and I took the kids to the pool again.  CAN I just say that this oxygen thing has to be working!  Emmy finally figured out how to hold her breath and was up to 7 seconds today!!  She wants to swim so bad, but now just has to figure out how to get her arms and legs to move the right way!!  It's coming, Thank the Lord!!!

 2 of the cutest kids in the world

 Hyperbaric mask...

 Smiles even with a broken arm

We attend a monthly monitor at PT and this is the bike we want for Emmy and she was able to push her body weight up!  She will be definitely coming back for PT after HBOT!!

Letting Go of Fear!

Since April, Randy and I have really had some roughs days, and in some cases, weekends.  Emmy had her ups and downs, her right arm seems to be dancing all over the place and her right leg won't walk when on the walker.  She can move it, but it has a mind of its own. Even Ella was saying, "When is her next MRI?"  Well, that day finally came, and while I have no idea if anything showed improvement, all we know is that it looks like the disease itself is DEAD!  Her brain, according to her very objective doctor, was stable and no new lesions. No lesions have appeared since November, so we are hopeful all bad antibodies are gone!!    The doctor and I send texts back and forth regularly, but he wouldn't elaborate on the MRI (Neuros are not good at giving hope and lifting of the spirits).  So, sometime this month we will meet with good ol' Dr. Toor and figure out a schedule to wean little Ms. Em off of prednisone!

BUT, Ella pointed out something so very true today.  We wait for these stupid MRIs with fear and trembling (remember, we are to only fear the Lord) and then she gets her MRI and we are all relieved that there is nothing new.  And so the fear is gone and Emersyn EXPLODES with motivation!  

Like this morning, I looked at the video monitor around 8:30am and saw her missing from her bed (Pre-curser to story: She is going to kill me later on in life for telling this but I think it is AWESOME).  I ran into the room to find her sitting buck-naked drawing a picture of ME in her notebook.  I quickly calculated everything and saw that she peed on the floor.  So I asked her why she didn't yell for me or squeeze her Build-A-Bear's paw to make him bark for me.  She proceeds to tell me that I told her to not make him bark... which I did say, but I also added to only bark for emergencies.  



So I ask her what happened and she told me she couldn't get my attention, so she peed, but proceeded to UNDRESS herself (Praise God) and then didn't want to wake me so she thought she would draw!!!  Oh, be still my heart, I LOVE this girl so much.  So I asked her if she wanted to get dressed and she said she would rather bathe!  So I put her on the toilet and she slid off and actually crawled into the bathtub like any regular kid would!  I, of course, steadied her body, but she climbed right over and sat up in the bath the whole time without falling over!!!  I seriously think FEAR is holding her back and nothing else.  

So we are back to diving head first into FAITH and making plans to do things that we haven't done in over a year!  If all is well in July, we will take our first drive up North to Maryland to visit our cousins (and maybe stop to see some sweet friends in DC). We thought for sure Emmy would be walking and playing by now, but that hasn't happened.  She is still crying to walk like everyone else, which breaks my heart.  But I know her.  I know her determination.  She will figure out a way to walk again and run, just like before.  And before you know it, she will be doing cartwheels across our lawn!  God has a plan and it is up to us to trust him and put our complete FAITH in HIM!  

"I can do all things through Christ, Who strengthens me" Phil 4:13