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.
No comments:
Post a Comment