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!!!
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!!
