Everett

This boy.  This boy has probably been more courageous than anyone (besides Emersyn) that I know.  Besides having his best friend go from wild and crazy to sick and immobile, he really lost his mom for quite a few month while I was in the hospital with Em.  But he has done such an amazing job of being understanding and kind, especially on the days when Emmy can't stand him.  And we know why Emmy gets mad..

Everett can talk, and walk, and run and talk-back (oh, not sweet little Everett!) and grab her toys without being able to run after him.  He can open the doors, go outside and do chores (Emmy loves doing chores).  And She can't.  And it breaks my heart that she is so jealous, but she has every right to be.

But it isn't Everett's fault.  And he always forgives Emmy after she refuses to play with him, let him in her room or even be gracious when I want to take him out on a son/mommy date.  He always tells her "Good Morning" and asks her questions, even when he knows he won't understand her answers.  He offers her drinks, food and sweets without being asked to.  He truly has a heart of gold (kind of like our other son).

And he rarely shows any resentment that I spend hardly any one on one time with him, except when he asked if just he and I could run away together....That ripped me apart.  I wish I could, even for a day...

And then I catch him kissing Emmy's cheek the other day asking her "Marry Me, Emmy" I am reminded that no matter what Emmy's condition is, Everett will love her unconditionally forever and ever!

Keeping The Faith

Did we just give up?  I don't know why but I just keep thinking that as we finally live in the "NOW" and address Emmy's immediate needs (and our own) we are not living by faith for her complete healing.

I finally opened up the 45 page document from the State on getting a waiver.  Guess what?  It was just a guide for all of the rules, testing and documents needed to get a waiver.

++What is a waiver? Essentially, if there is a human being over the age of 6 with an intellectual or physical disability, the state will provide a "group home" or "group medical necessities", but you request a waiver that allows you to take care of that person at home with some type of help.

The state is supposed to provide monetary help, or equipment usage or even send a nurse a couple times a week... If you qualify.  The social worker I talked to said Encephalitis isn't even listed.  Really?  Brain injuries are the number one reason why a person would be disabled.  THEN the big kicker was I have to get Emmy IQ tested, but nonverbal since I am the only one who understands her.  I explained over and over her intellect is fine and I don't want an intellectual waiver, but the state REQUIRES it.  But because insurance says it is not necessary, we have to pay out of pocket.  I did go to the local school system and they are hearing my "case" next week to see if they will test her for free, since they are responsible for the educational welfare of every child in their district.  Maybe the Tebow bill opened their eyes to see that even Homeschooled kids (whose parents pay taxes to local school systems) have rights too!!!  But if they will not test her, get this, our neurologist's wife is a licensed psychologist who administers the test!  So one way or another, we will get her IQ tested. ++ never mind about the Tebow bill that passed House and Senate-Governor vetoed it...

The other thing that almost killed me doing, was asking for a prescription for Emmy's own wheelchair and walker.  I don't know why but this felt like defeat.  I had imagined walking so proudly to the wheelchair clinic at CHKD and giving back the big, heavy wheelchair, fit for a child who has no neck, trunk or leg strength and the Crocodile Walker.  Well, that hasn't happened and I realized this wheelchair is just too heavy to take places, which in turn I keep carrying Emmy everywhere which is hard on the arms and back.  I need to add that this in itself is a miracle that I have not experienced very much back pain since this whole thing started last July. God is definitely keeping me well so I can take care of Emmy!

The other thing we did was to finally accept monetary help from friends and family.  Either we were to proud to say so or just waiting for that quick miracle to happen where we didn't need any modified equipment at all.  My friend Melissa set up a donation site after pleading with me to allow the people who keep asking how they can help to be able to give.  Thank God I said yes.  A modified stroller big enough for Emmy and her dystonic leg was over $1,000!  Then, once we find out what kind of wheelchair the insurance will provide, we can purchase a standard stroller that will be easy to take places if we ever can feel comfortable enough to travel.  Oh, the dreams of leaving this house on some kind of adventure other than therapy have almost overtaken my thoughts!

There is some good news to report!  The doctor finally tested her for autoimmune encephalitis and it was negative. There are a few autoimmune encephalitises out there, but I just kept doubting this is ADEM because the inflammation won't stay gone. But I am so happy he was right!  Not seeing the advancement in her health and physical strength the way WE want it to be is so tough and makes us question everything. She seems to be getting weaker every day... Emmy got the flu yesterday and we KNEW it was a virus from the fever, but oh how the thoughts stray when she is crying, puking and covering her eyes because the light hurts her head. But trusting that God is in control and then oiling her up with every anti-viral oil I own kicked it in less than 24 hours!!

But I do ask that you just pray for some kind of answers soon. Emmy seems fine intellectually, but she seems to be regressing physically. She has been choking more when drinking, sometimes her breathing is labored and her right arm is so spastic she tries to suck her fingers almost all day (which the sucking of her fingers seems more neurological to me). She isn't sitting well either, and I am constantly trying to prop her up or help her sit up properly in a chair. I video her quite often and I have her feeding herself just weeks ago and now her right arm just seems way to weak (and really uncoordinated). We will know more on Wednesday after her MRI. Every day I ask God, "When will this end?" 

So if Faith IS the substance and the evidence, then I may be lacking lately.  I cry more often then not and I really try to stay positive, but 8 months is a very long time to watch your child suffer, when this should have been done months ago....Really, it has been longer than 8 months because this started in April after breaking her arm.  Oh, how I still wish I could turn back time and force those pediatricians to test her for more than "food allergies".  But we can't change the past, only the future and my quest has been to make Emmy's life as good as possible and love her more than I ever have before.  

Emmy's cruisin' now!

This week has been draining.  Emotional. Tearful.  I am not sure what sparked it, but I have been a wreck.  Hormones, maybe.  Seeing our child in this condition for over 7 months has worn us down.  We are frustrated, angry, shaking our fists at the One who made us.  Our feeble minds are still just trying to grasp what in the world is going on.  But then we see those small signs of hope that things are getting better.

Emmy had her second swim therapy session the other day and tried getting out after 15 minutes.  The heat of the pool and the amount of calories her body burns because of muscles constantly contracting made her want to quit.  But her therapist kept her going for 40 minutes, then we ate Schlotzsky's, any fast food makes her little steroid filled body happy!  But when her body is so fatigued, she doesn't have the energy to get her voice audible or even sit up on her own.  But her mind is quick as lightening!  She is thinking and analyzing all day long.  Which scares me...

We were in the kitchen and she was in the living room.  I heard her faint sound and went and grabbed her to come into the kitchen with us.  All of a sudden she starts pointing at everyone.  She cries out, "Daddy walks, Eli walks, I want to walk... I want to walk"!!!  This just ripped me apart.  I know she is thinking it all the time when Everett is running through the house or Eli runs to the door when someone knocks.  We just don't mention those things that she can't do, because she cries hard and then I cry and then the whole family is an emotional wreck.  

Then she said, "Bring me my walker"! So she practiced walking for about 15 feet then I bathed her and put her to bed.  And then, once again, I am reminded that "Joy comes in the morning".  When she woke up, her voice was strong, she used her walker first thing down the hallway and her right leg (affectionately called Allen) was moving like it should (her left leg, Boudreaux, was named by Mimi).  

Another day and another blessing comes as an unexpected surprise from our neighbor, Sandra, telling us that her friend is thinking of donating a scooter, since his wife had just passed.  I tell her it would be an absolute blessing for Emmy to have it to go on walks with us or even go from the living room to the kitchen.  Well, he agreed and this morning, upon Randy doing some minor modifications, Emmy is cruisin' and can't stop laughing!  She has already scratched the walls and some furniture, but she is quite the navigator!  We, of course, have told her that this is temporary and will still have to use her walker, but she is so happy!!!  Thank you so much, Allen and Sandra, for thinking of our Emmy.  

PS. I can't wait for the day I can give it back, because that means our little chicken is walking more than sitting!!!

Upcoming dates:  MRI April 1st and if all looks well, another IVIG treatment April 3rd.

Trying a different treatment plan...

Chemo wasn't showing us hopeful signs.  I am not sure chemo shows any hopeful signs for anyone physically or emotionally, but everyone hopes to see it effect the disease it is supposed to annihilate. Chemo was supposed to suppress Emersyn's immune system, but incidentally two new spots of inflammation reappeared.  I say reappeared, because they were not new lesions with inflammation (thank God).   So back I went into "research mode", trying to figure out what options out there are better for ADEM or auto-immune encephalitis, which is what she is mirroring right now.  

**Just an FYI about us doing the research.  It is commonly well-known that when children or adults are diagnosed with rare diseases, the parent (or adult) usually has more time to research than the doctor does.  Of course, the doctor has past experiences and trial and error to work with, but autoimmune encephalitis is rare, especially the kind that doesn't show up in the spinal fluid or blood work.  So most doctors take the suggestion of the parents, realizing that they have read more recent studies and asked others in the same situation.**  

After reading the testimonies of many, many encephalitis sufferers, I saw that many of them were on chemo, but the rest were on a monthly infusion of IVIG.  Of course, these people were diagnosed with a different (or so we think) auto-immune encephalitis, but at this point we just need something to kill those bad antibodies that seem to keep inflaming her brain!  So when the doctor called me last week about stopping chemo all together, I asked him if he considered IVIG treatment.  He said he felt comfortable with proceeding with that for 3 months and scheduled her to go in Tuesday, March 3rd.  Of course, he will also send Emmy in monthly to do an MRI to make sure it is working.

Now, let me tell you how LONG we have been asking questions to 2nd and 3rd parties on how to handle Emersyn's case.  Our doctor has also showed outside sources her labs and MRIs, but everyone comes back with the same diagnosis, ADEM.  ADEM is supposed to be short lived and once it is stopped with high dose steroids, it shouldn't come back (ugh is what I say to that...).  But I contacted the director of a British encephalitis organization called Encephalitis in Children.  She cited a book source to me of a highly regarded ADEM specialist in South America named Sylvia Tenembaum.  This specialist noted that as ADEM is clearing up and recurrence of inflammation occur, IVIG is very effective.  To explain what IVIG does is hard because every source is different.  Some say it dilutes the total number of antibodies in the body, making the bad antibodies ineffective.  Other sources say the IVIG attaches to the proteins which are made by the bad antibodies and yet other sources say something about how the IVIG attaches to the receptor sites on cells, prohibiting the bad antibodies from attacking.  Whatever it does, I am going with Sylvia and that is why I mentioned it to Emmy's doctor.  

Our schedule will be a little crazy for the upcoming months... We are still weaning Emmy off of prednisone.  Now, weaning is important, not because of relapse, but because prednisone stops the adrenal glands from working. I am diligently using essential oils that help activate the adrenal glands and also giving her about 500mg Omega 3s daily.  So while we are weaning, she will be having another MRI in 3 weeks, followed by her second dose of IVIG.  Each month will be an MRI followed by IVIG for 3 months.  The neurologist feels that 3 months of this will be a good sign if this treatment plan is working.  I just feel HORRIBLE that she has to be given an IV each time she goes in.  Her hands and forearms look so bad sometimes from the bruising, but she handles it so well for a 7 year old!  Once again, I thank God for Emmy's determination, small rebellious streak and personality every time we go in for these procedures.

***So as I was writing this, I forgot to mention what a terrible side effect IVIG had on Ms. Emmy's head and stomach.  Three hours after the IVIG infusion she started having a headache, followed by the next day of vomiting and migraines. We took her into the ER that afternoon because she couldn't keep anything down and her symptoms were the exact mirror of a relapse.  Praise God, it wasn't and we found out that IVIG can be harsh on the body for a few days after, but she was only sick for the day after and has been doing great since! 

Thanks for keeping up with Emmy and her treatment plan and continuously praying without ceasing!  She needs it and so do the rest of us!!!