Friday, September 7, 2012

Our Story Continues...

I guess I ran out of space for tabs up at the top so I think I will post on the main blog, but leave links in the tabs so I can keep everything in order. P.s Sorry for the grammatical errors and mis-spellings.

Where did I leave off?

We were in the hospital for over a week. We were told Hailey has ADEM, she's on a massive dose of steroids, but she's home and taking steps on her own. I take a moment to think, how much did this whole hospital thing cost us? We were all relatively healthy before all this, so we has the "just in case" insurance plan. The one with a $10,000 deductible! I put that in the back of head for the moment and kept moving.
So now I must get on the phone and find help to rehabilitate Hailey. She will need Physical Therapy, Speech Therapy, Occupational Therpy, and she will need to be enrolled in a school program for preschool. First on the list is to call a rehabilitation center that is 1) Covered by our insurance 2) Has availablity and 3) is for children. The hospital tells me about a place called Health South Rehabilition that will be able to take Hailey in about 6 weeks but only for Speech and for Occupational therapy.They don't have Physcial therapy available at the moment. Of course they don't that is the one she needs most. So I have to take her for an assesment and based on her ability they will put a schedual together for her.
Our first day there I tell Hailey that we are going to school and she's pretty excited. She'll have OT and ST back to back so we will be there for a good block of time. I know all things take some getting use to and this experience was one of them. We sign in, pay our co-payment and then take a look around. Hailey had to be the youngest person there by at least 50 years! Hailey had asked me if we were going to see granny here...LOL! Hailey had never been in a "school" environment and I had told her that was where we were going, but this place looks like a hospital.  So besides re-learning how to feed herself and color she'll have to learn how "teachers" work.
Our Occupational therapist was a real nice guy, but I don't know exactly how much he had worked with children before Hailey. Kids maybe, but a 3 year old not so much. OT was a lot of fun. You get to eat applesause with a spork, you get to play with Play-doh, hit balloons, lace cards, and take off your shoes (just to put them back on again). Now if you gave a kid Play-Doh and just let them have at it, it's fun and exciting, but when the "teacher" tells you what shapes you must make with the Play-doh it doesn't seem as fun. I remember the OT therapist telling Hailey when she wasn't listening that if she wasn't going to "make a worm" he would just wait until she was ready to. Well we only have an hour for therapy and Hailey when being stubborn, would out wait him. I had to tell him that he gets paid by the hour...
Hailey enjoys speech therapy a lot. The therapist brings an iPad and tells Hailey if she does her work she can play with the iPad. Works like a charm. The ST works at the school district so she deals with little kids every day all day. We even get homework to take home. At this point I wonder how they can tell me that as bad as Hailey's speech was effected that she only required 1 hour of each therapy a week. I found out that it's not up to the therapists, it's up to the insurance. Not only that, insurance said that we can only have 12 weeks of therapy... Oh insurance, how I have a love hate relationship with it. I know Hailey needs more help and I call around to private therapy businesses and the cheapest I had found was $100 per hour, per therapy, but you can get as many sessions as you want. So if I wanted her to go to all three therapies 3x's a week it'd be $900 a week. I felt like a bad parent when I figured we couldn't afford that. It's something she NEEDS. So I do my best to be her OT and ST.
In October Hailey finally gets in to a physical therapy session at the rehab center. This therapist also works for the school district and is very good with kids. She works Hailey too. Up the stairs, down the stairs, over rope, jumping on trampolines. Hailey loves PT, but again, 1 hour a week isn't going to cut it. I tell her that we have an evaluation at the school district to get Hailey into pre-school and I want to know if she will get PT there too. She had said unless your child is in a wheelchair or needs 24/7 assistance to walk I most likely won't get it. Ugh! The school district, is another love/hate relationship. (you'll learn more why later)
So all of September and October we go to the rehab center once a week to do therapy and things are going great. I get a call from Child Find (this is where they will decide if she'll go to school) and we have to go in for another evaluation. Now you have to keep in mind that this whole time we are thinking ADEM for a diagnosis. Evaluations take 2 weeks. Hailey meets with a Speech, Physical, Occupational and psychological theripist, along with a nurse, regular ed and special ed teachers. After all the meetings they call us in to discuss what they recommend. This was one long meeting. We had to hear what every single person had reported and how they think Hailey should continue. First they say that they would recommend that Hailey be put in a Special Ed Pre-school Program through the school district. There she will recieve 120 minutes a month of Speech therapy. She doesn't quailfy for Occupational or for Physical therapy. She will also be taking a bus to school. A ton was going through my head. The bus thing was not sitting well with me. They tell me I would have to call and set that up throught the transportaion department. (I might hold off on that for a while...). I couldn't imagine sending my little 3 year old on a school bus and just waving goodbye. I ask why Hailey quailifies for therapy insurance covers but not for therapy in the school. They tell me that basically if Hailey can sit down in a chair and get up and out of a chair no PT is needed. They also said that OT is part of the cirriculum in school when they learn to color, eat lunch and write their names..? This is mid-October and I just have to wait until they find a school with space for her. A week later I get a call that Hailey's first day is Nov. 2nd Now we must go shopping for a backpack!

Two weeks after Hailey finishes the steroid wean she was on since August something goes wrong...It's Halloween day. Hailey was having trouble blinking her eye, that's what I noticed first. Not both just one on her left side. Then I go to tickle her and when she laughs only HALF of her face works. Right away I think, Is she having a stroke? Did she already have a stroke? What the heck is happening now? This is FREAKING me out!
Right away I called her neurologist and tell him what is going on and how this is URGENT!! I get told: "I think I know what it is, you don't need to bring her in, but, if it gets worse call me back. Um...WHAT? I tell Josh and he said go with what the Dr. says. She how she's doing after tonight and if I want to take her in we will go tomorrow. So like I said it's Halloween night. and I have been telling her we are going trick or treating for days. We debate and then decide we could go to a few houses then see how she feels and go from there. Whatever is going on doesn't seem to be bothering her. I ask if it hurts and she says no. So we go trick or treating.
The next day it's the same no worse, but I don't like it and we take her into the neurologist anyway. He tells us it's what he had thought it was and it's called Bell's Paulsy. It's isn't something that was related to "ADEM" and it should go away in about 6-12 weeks. She ended up having a little residual effects from it but it did clear it's self up. I was curious to how she got it. I remember brushing her teeth and seeing a little white dot on her tongue. I thought it was a swollen taste bud but it was some kind of canker sore...

So now she's off steroids, It's November 2nd and it's her first day of school. She is super excited. I take her and show her who the teacher is and they tell me to just leave her and pick her up in 2 1/2 hours. I had no idea what to do with myself at home...I go to pick her up and she does NOT want to go home. I tell her that she gets to come back tomorrow, but she wants to stay. She LOVES school!

The rest of November goes by without a hitch and we have an MRI scheduled for December 16th. They told me I had to make an appointment with the neurologist for the results. When I call to do that they schedule me for February 2nd. Well...that's kinda a long ways away and I questioned that. The lady said that if there was something urgent they would call to reschedule. With every thing we have been through, the uncertainty if this whole ordeal is behind us,  and the mountain of bills that have started to pile up we decide that this will be the first time we won't make to Josh's hometown for Christmas. Josh wasn't too happy about not seeing his family, but we had to do what we thought was best. We had our own family Christmas at home. Most my family lives by us so it's not like we were totally alone. It was just different.

The day of her MRI I was a wreak again. They would have to sedate her, but she should only be out for about 45 minutes. Then we were going to take her home and have a pajama movie day in bed. So The MRI goes fine, they don't tell us anything. We go home, relax, watch Phineus and Ferb on loop. She seems as you would expect. Cranky, groggy, hungry. So now we just have to have Christmas, celebrate the new year, hope this is all behind us and go to our appointment on February 2nd for the MRI results.

We don't make it that far though...

TBC