Saturday, November 1, 2008

Honestly....This week has been the worst one I've had in a while....

This was the worst week I've had in a very long time and I'm so glad it's over!

On Monday we saw the geneticist and she informed me that in her opinion Hannah does have DRAVET but that the genetic test we needed to help us see if she is more than clinical for it, would not be covered by our insurance. The test was $4400 out of pocket. She then felt Hannah had extreme hypotonia in her hands and ankles. I came home frustrated. Contacted my Idea League parent sponsor and an md on the board and she went to work to help me get what we needed. So, once again I'm advocating for my daughter and getting her what she needs. This stuff is alot of work. I also contacted Dr. Beyer (Hannah's pedi) and she is sending me paperwork to get Hannah evaluated at Scottish Rites. Then we got new neighbors and they asked if they could cut down a dead tree in our front yard. They said they wouldn't charge us, they just liked to cut down trees.

On Tuesday I take Hannah to school and we find out that one of custodians passed away the day before on the school campus. Bless his heart. He was a very nice man. I ran into Mrs. Divin and we had a chat about how I really like Mrs. Mobley(Hannah's teacher) and am so glad they moved her to this school. We talked about Kyle and his college, Zachary and how he's liking Highschool and of course Hannah and how she's a hero. I get home and the city is in front of my house telling me that they will not pick up the limbs the guy cut down because they are too big and that I'll have to cut them down more and it will still cost me $65 for them to pick it up. LOVELY! I have plenty of time to cut limbs and I just love throwing $65 more dollars to the city. Ugggh! So, I went to work trying to figure out what to do. Then a woman from DADS came to the house to do an assessment on Billie to see if we can get her some assistance with baths, etc.

Wednesday I had a gastro appointment that I canceled. The day wasn't too bad but then that evening I gave Hannah her bath and washed her hair. Her hair has been a mess y'all since July. I would just about get it all worked out and she'd go into the hospital again and have another 24 hour EEG and it would be a mess again. Well, three of those incidences had her hair in mats at the scalp. I've been steadily working on them and working on them. Wednesday night I just couldn't get them out. I worked them towards the ends with her screaming, "Please! Jesus! Please!" I was so upset. I had to cut them out so I cut about 6 inches off her hair. The comb went right through after that. That baby had been through enough torment and I wasn't going to torment her another minute over some hair! It just wasn't right. In between all that my neighbor kept ringing my doorbell to ask me if they could finish the job with the limbs and I just pay them instead of having to pay the city. That they needed the money bad. So, I agreed to just let them do it and get it over with.

Thursday was the worst day. I was in Wal-mart when I saw another parent. Not a parent that I speak with or even know. Just one I've seen. I nodded at her in passing when she stopped and asked me what I was going to do about the school district not letting Hannah's dog come to school with her. I told her I didnt' knwo that they weren't. Basically she went on telling me a bunch of stuff that really upset me. Things like people think I'm overprotective and that Hannah doesn't need the dog. Then I was in line at the school to pick up when I found out I had been breaking rules by posting pictures of Hannah that had other school children in them. Not a big deal because I didn't know. I just took those ones off. Then I got home and I had a letter basically threatening me with truancy over Hannah's absenses. I know they are only doing what they are required by law to do but it's just unnerving. There has to be some kind of exception to the rule. Ugggh! So, I emailed the assistant principal and asked if I could just trash the letters or does she need me to go through the whole process of sitting in her office explaining why Hannah was out so much even though they have a note on file. I then emailed Hannah's teacher and had a breakdown telling her how stupid I had been to brag on this school district, etc. I cried all afternoon and into the night. It became glaringly obvious that I had been the victim of ignorance. There had been no talk among administration and faulty that I was overprotective and that Hannah didn't need her dog after speaking with Hannah's teacher more. How can a parent kick another parent like that when they are down. Surely to God in heaven they aren't "jealous" of Hannah getting a service dog! I just don't think people get it. Hannah almost died three times in less than three months! I'm talking she was dying. If it weren't for life support, emergency seizure meds, and a miracle she wouldn't even be here for us to worry about whether I'm overprotective or she needs her dog. I guess unless you experience it yourself you can't even understand. I know that I'd never do that to another person though and it's hard for me to understand anyone else doing it. Even if I had heard such talk I'd have never told the person because I'd assume with all they'd been through they didn't need to hear that mess. Uggggh! I'm rambling. I feel like I'm back in Junior high with this crap!

On Friday I got a call from the lab that we had been working with about the testing needed and the rep went to work for me. By that afternoon she called me to inform me that she was able to get Hannah's testing at 100% covered. They are sending me the kit to go have the lab drawn and then I am to mail it to them. Not the lab. I also got a call from the assistant principal and will meet with her and Mrs. Duncan on next Thursday morning. She was kind when she made the date. I'm pretty embarassed for not keeping myself in check and having an emotional breakdown over the whole overprotective Hannah doesn't need that dog thing. It's just that the woman knew alot of specific information and she I was upset that there was concerns but no one had said anything to me about it. (((sigh))) I thought our luck may have changed. Everything seemed to be going alright when I was combing Hannah's hair and decided to french braid it. I got towards then end and found a big bald spot. I have no idea what it is from. From her meds? From all the meds at the hospital? From the EEG's? I just dont' know. It was pretty much a breaking point for me.

I'm scared. I won't lie. I'm actually very scared. I'm tired. I'm frustrated. I'm a number of things. This is hard stuff. The liklihood that Hannah could die in one of her seizure episodes has increased. It's a very real chance. When I drop her off at school in the morning the chance that she will be gone before I see her again is there. I know it's there for everyone, but it's really there for me. That being said I want her to enjoy her life to the fullest of her ability. I want to do everything I can to help her be safe, but I do not want to hinder her living this life and loving it to the fullest. Believe me when I say that's a hard task for this mom.

Please pray that next week is smoother than this week. I have a very busy one. Billie and I both have doctors appt's on Monday. Billie has one on Tuesday plus it's election day. Then Wednesday I have an appt. in Arlington. Then Thursday is my birthday (Whooooopeee! LOL!) The big 38. (blech) and I have a meeting with the principal and assistant principal. So far Friday is open, but I bet it won't be by the time it gets here. LOL!

I appreciate all your prayers. Please pray for my sanity. I have 4 months until we go get the dog and alot to accomplish in those four months. Plus, the holiday's, finding a house and trying to move, and just a bunch of stuff. My head hurts just thinking about. Thank you for all your support. We'd never make it without y'all!

1 comment:

flutevet said...

I just lost my post. But I wanted to let you know that I am praying for you and for Hannah and for your family. You and Hannah are probably the bravest people I know. You are loved and always in my thoughts and prayers! Lisa