- Hailey was admitted to the hospital for the second time January 12th
- Another MRI was done, now they are thinking Chronic ADEM, MS, or Leukodystrophy
- We try 5 IVIG treatments that don't really seem to have worked
- Our regular neurologist has a look of complete dread when he talks to us
- We do a huge blood draw for the Leukodystrophy panels
- We get to take her home, but she isn't walking or even baring weight on her legs
We got back to see our Ophthalmologist and she dialates Hailey's eyes. Apperantly that stuff burns and Hailey isn't a fan. The Dr. says she has become near sighted in her right eye. The same eye that went crossed last August. Right now there is no need for glasses but we have appointments every 6 months.
Hailey goes back to see the neurologist first he is shocked that she's walking on her own. By shocked I mean totally and completely confused. We both had bet that he wasn't expecting that to have happen. He decides to puts on SUPER high steroids. 1 tsp = 5mLs she had to have 8 tsp or 40 mLs a day for 10 days. This will go down every 10 days for 3 months. By the way this stuff tastes HORRID! After trying to get this kid to take her medicine for the first week and having her gag every single time we tried hiding in different foods. I tried pudding, chocolate milk, prune juice nothing would mask the taste. We later found out that Walmart could flavor it by adding about a 1/2 pound of sugar to it. (exaggeration)
Since we have to go through so much of this stuff we have to go back and get refills quite often. The first time I went to Sam's club to pick up a refill they tell me that the insurance will only pay for X-amount of medication every month and she had reached that limit. So what are my choices? She needs this medication. We were told we could pay out of pocket and it's nearly $200. I think to myself I pay for insurance on a monthly basis, but they won't cover all the prescription needed. I am having to pay out of pocket anyway what do I need insurance for?
The next time I get a refill from Sam's club something super odd happens. The girl rings it up and I say I have insurance and the price for the same amount I just paid out of pocket was HIGHER then it was WITH insurance. HUH!?!? I told the girl that I was sleep deprived and I think I heard her wrong. With insurance the price is Higher then without? I asked her if that is what she just said and she said, "yes." That makes absolutely NO SENSE!! So I pay without insurance and the lower price. Ridiculous. But I don't care because I believe this stuff is truly helping Hailey. If I have to buy it by the barrel then so be it.
It's mid February and everything is back to normal now. Hailey is walking on her own and also back to her old self. Even talking better then ever.
For Valentines Day we decide to bake cake pops for her school's Valentine social. She's my favorite helper in the kitchen. She LOVES baking!
Can you believe how great she is doing? We go back to the neurologist and he has the results for the 6 types of leukodystophies we had a blood draw for. He said that all six came back normal! I was convinced that there was no way she could have such a terrible life threatening disease. The Dr. said to continue to wean her off the steroids and he'll see us back in 3 months.
Towards the end of her wean it's April. She'll be on 1/2 mL every other day for ten 10 days then she'll be off again. When the last day of taking medication comes I give her the last dose with tears in my eyes. I know that these steroids are what's keeping her "Hailey" I just know that without them she'll relapse.
3 days without steroids and we are back in the hospital again...