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!!!