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A case where "Sorry" isn't enough.....

So here's the update on the missed meds.

I drop Faith off at school the next day and there's a lady, whom I've never seen, bringing Faith's wheelchair to the door. I see someone sitting on the bench inside, I couldn't tell at the time who it was.

At this point they had no idea about the missed meds.

So the lady pulls the chair to the front of my car and I asked her if she was replacing Dee (the teacher) today, she said no that she was an aide out of one of the other classrooms. She talked to Faith and commented how pretty she looked and joked that she would have to borrow some of her clothes. We shared a little laughter. So I asked her if Dee was there today and she said yes, but that she was already down in the lunchroom. I told her that I needed to speak to someone that was normally in Faith's class. She said that Lisa (I believe that's the name she said) was inside. So I walked in the school behind her and "Lisa" was the aide that I dropped Faith off to the day before (better known as "the missed meds day" 9/27/06).

So I asked "Lisa" if Faith had eaten breakfast the previous day (if they didn't give her meds, I had to wonder if they had even fed her). She said yes, she had eaten breakfast. My next question is who fed her. She said, "Well, let me think....ah yes....I did." OH MY GOD!! She had think who fed Faith?? When she was the one that fed her?? Ya just gotta wonder, ya know? I then said, "Well, we have a major issue...". She gazed at me with a blank look on her face. "....because Faith didn't get her meds yesterday morning." I literally watched this woman's jaw drop. There were two other staff members in addition to "Lisa" and the aide that had Faith standing in the hall as I confronted her. I then explained to her how I had gotten in Faith's backpack to put in her meds for the next day and found that there was a dose left in there. I then made it a point of the hour that I spent on the phone back and forth to Tim trying to find out if Sheri had put the pills in and also made sure she knew that I had to have Faith's neurologist paged at 10pm to find out what I needed to do to ensure that Faith didn't have a seizure because of her low count.

Her response?
"Oh Ms. Smith, I'm really sorry".

My respose?
"Well, while I can appreciate your apology, that doesn't erase the fact that Faith's meds were not administered as directed. You have to give Faith medication ONCE a day DURING breakfast, how hard is that to remember? This medication is crucial. We are lucky that Faith didn't go into a seizure and ya know, I just gotta wonder even if she had...would have anyone noticed? Typically when Faith has a mal seizure it's so severe that this little girl has to be taken into the ER and adminstered Phenobarbital thru an IV. So again, while I can appreciate your apology you obviously understand why I'm so upset."

I left. I needed to before I got angry. I was hurt and felt that her "sorry" didn't even measure up to what I felt needed to be done. I kept very calm and actually when I look back at it, I'm very proud of myself because I'm gonna tell you that I was ready to explode inside. As I pulled away from the school, now late for work, tears were rolling down my face uncontrollably.

I find out later that this staff member that missed giving Faith's meds was the registered LPN.

WHAT???!!!?!

This is bad...very bad. Something has got to give here. While our children are in school it IS the facitlity's responsibility to take care of them as we would. Some children, such as Faith, take a bit more care and attention. Ya know....not having enough staff to see that my child is properly taken care of is NOT an excuse, nor will it be accepted. They think we're asking too much when we stress the importance of Faith needing a one-on-one aide, not only that it will further Faith's learning and development to have that attention but this situation would not happen again if one person would have one responsibility....and that being Faith.

No, I don't think it's too much to ask that my little girl be safe and taken care of while in school. I trust them to see that this is done while she is out of my hands...it IS their responsibility. If something was done to their child while in the care of someone else, wouldn't they expect the same?

The fight for Faith, and now what I feel has been jeopardized..her safety...will turn even stronger.

TV, radio, newspaper, Senators, Lawyers....whatever it takes.
Sad, isn't it?
"Normal" children don't need to go through this to see that they get a proper education and ensured safety.

Not being fair is an understatement.

The War Begins

Well, it took a lot less time than what I thought...besides the fact that I didn't think it was going to be anything THIS major.

Get this.

So, every night before bed I give Faith a snack (usually something like a Little Debbie cake) to take her meds with. It's easier and more tolerable if it's sprinkled on some food. When I do this routine, I also take the pill bottle out of her school bag andgo ahead and put in her meds for the next morning. So I get in the school bag and fish out the bottle. As I take it out I hear, what I think, is the empty capsules (her meds are capsule pills that are opened and sprinkled over her food). I was stunned to find out that it wasn't empty capsules at all, but the dosage she was supposed to have taken with breakfast....at school.

I don't want to freak out just yet. There was a possibility that Sheri (aunt/babysitter) could have put in the dosage for the next morning. Even though she NEVER did this....maybe, just maybe.

So I call Tim at work. I tell him we have an issue and then go into explanation. He said he would get in touch with his sister and ask. In the meantime I get to thinking...ok, what do I do if it wasn't given. I mean, if it were then heck...things are all good. I've never had a complete dosage skipped before...given late, yes....but skipped? Hell no. So I call the hospital to see if they have Dr Gingold (Faith's neurologist) on page. She said yes. I give her my number and wait for the call. In the meantime, I call Tim from my cell to see if he had heard from Sheri yet. He said that he had to leave her a message and he should hear something from her no later than 10:30. While on the phone with him, Dr Gingold calls the house phone. She tells me instead of giving Faith's regular dosage and the entire dosage missed, to half the missed dosage and give it with Faith's normal dosage for night. Sounds confusing, but I understood what she was saying. So Tim, still being on the phone, overhears all this and says that I should hold off on giving her the additional till we find out for sure that Sheri didn't put the pills in her bag. He's tolerable when he thinks.

15 minutes later he calls back to inform me that Sheri DID NOT put those pills back in her bottle.

Oh yeah....the war begins and we're about to go in with loaded ammunition.

Daddy's Town Fair

Not much has happened in the way of the school board lately, of course we haven't scheduled her IEP meeting yet. I suppose once that's done and over with there will be a blog entry 5 miles long. I'm so sick of fighting.

So yesterday after dropping of Faith to her Daddy, I run over to Family Dollar to pick up some "must haves" and actually found quite a bit of "don't neccessarily need, but want" and decided to live on the edge and pick those up. I needed something to do till I had to make the drive to Pittsburgh. Hey, that's what happens when he (Joel) goes out of town and leaves me here all alone. I do the obvious......blow money.

So I'm browsing the store and my cell phone rings "Dueling Banjo's", the ringtone I have set for Tim....ummmm, what other ringtone would I apply to him? Fits perfectly. So, I pick up and he says to me, "You'll never believe what Faith and I just did!". I was a bit wierded out by him calling just to give me the latest scoop on his day, but I played along. My comment was, "Ok, I'm scared...but what?". His response? He says, "Faith and I just took a ride on a helicopter!". Faith's been on a helicopter before, not sure if she remembers anything as she was flown out because of seizures. He said she LOVED it! That's so funny. My little rebel. Now me? There ain't a million dollars.....well, I dunno...let's go a bit lower when talking cash, eh? You couldn't give me a hundred dollars to get on an airplane OR especially a helicopter. Now see, that's where Faith and I share something. I was life flown to a hospital back in '92 as a result of a car accident, but I don't even remember the accident let alone the helicopter. Nope. I'd HAVE to be unconcious to fly.

Anyways, Lost Creek (the town Tim lives in) was having their wonderful annual hillbilly ho-down yesterday and I suppose they were giving helicopter rides. I dunno. I try not to think of everyone in that town in one place at the same time. It scares me. I had to go to that friggin thing year after year and the visual memories are haunting. Well....maybe not that bad, but you get the idea.

Big Girl

Well it seems as if Faith is going thru a "growing spurt". She's growing into a young lady very fast. It's funny to sit and watch her. She knows more of what's going on around her then what a lot of people think. She's amazing. And God it takes my heart to watch her. She is such a happy little girl. Yesterday when I picked her up from her Daddy and she saw me she got so excited and started waving those little arms in the air! Warmed my heart to see how happy she was to see me.

She loves her music too, I have to say she definitly takes that after me. Her new favorite is "London Bridges" by Fergie. Yeah, that's my girl...my lil hip hop queenie!! She, of course, will always love Nickleback and Rascal Flatts. Ah yes and let's not forget Alison Krauss. My lil music mama.

I can't even begin to imagine having Faith any other way. I wouldn't change a thing about this little girl. So she doesn't walk, she doesn't run and chase the cat, she doesn't say "Mommy", or she doesn't say I love you. But to see her eyes and to watch her, I don't need to hear those words. And when...if...those words ever slip from her lips then of course I would be happy. But if not...I'm fine with the way this wonderful little girl fills the hole in my heart.

So the fight begins....

Ok, I can no longer do the "on behalf of Faith" writing. I will write in MY words, from MY point of view ON Faith's behalf. Sorry, but today has been one of the first, of many, days that irritate me to no end.

So moving....ya know. Moving sucks anyway. I mean you gotta pack up all your crap, crap you probably forgot you had, and load it to unload it and then put it all back up again. I think it would be real neat if they had "ready to move in" places where you didn't have to move a single slappin thing. You just moved and everything you need, and liked, was already set up. Eh, wishful thinkin' I suppose. Anyways, so we're moving. Moving from one city to another.

So I go to Nutter Fort today (the 1st school Faith ever attended, which she left 2 yrs ago) to enroll her. The principal is awesome. He's a former Marine Sergeant so he looks rough, but his heart is pure gold. I know, I've seen this man practically in tears...it was heart-wrenching. Anyways, I go in and ask if he wants Faith back and he immediately smiles. I explain to him that we're moving back to Clarksburg. He asked where. I told him. He said that wasn't his area and that I needed to talk to the principal over at North View to sign the transfer papers and then set up and IEP meeting before she can actually attend Nutter Fort. Fine. Now mind you, Monday is the first day of school. I know...procrastination...but I assumed transfer papers would be the only thing I needed to do. So I head to North View. Nobody's there. I'm looking around the building and there are steps everywhere. There is absolutely no way Faith can even get into this school, let alone the fact that the Special Needs classroom is located on the 3rd floor. Granted they have an elevator, but what if there's a fire?? There's no way she can be carried down 3 flights of stairs. So at this point, I'm kinda freakin out. I mean I have got to get some answers...TODAY!! So I'm done. I will go right to the source...the BOE itself. Hell they are gonna have to help me there, right? I dreaded this. I have not had one good experience with these people yet so I had a feeling my day was going to do nothing but go downhill. I even called Joel to "warn" him that the next call he gets from me might be from the Harrison County jail. Yes. That bad.

So I walk into the BOE building with my boxing gloves on and since there's no receptionist downstairs I just picked a floor. 2. That's always been a good number (process of elimination, really. There were 3 levels, I picked the middle). So I tell my story to the "fill in" secretary and she picks up the phone to call Mr Yedneck. No answer. Calls Miss Media (oh buddy, her and I have clashed in the past) and she pretty much tells her (not knowing the specs on the situation and not having a clue it's me) that I needed to do the transfer between principals. So another gentlemen overhears me freaking out and asks me if he could help. Well, before I even got 2 words out a lady steps out of a nearby office and he intros her and I. So...I start my story again. Before I got a sentenance out a gentleman steps off the elevator and she interrupts me to intro me to him. At this point I felt like I was just being "pawned" off to any passer-by. I met John Babyak (do you hear the choir and see the halo yet?) and he immediatly takes me upstairs to his office. Sits me down and asks my story. So, from the beginning I tell him. His response? Immediatly picks up the phone to call remarking how there's no way that Faith can go to North View without it being handicapp accesible. Wow! So, he makes several calls and to get to the point of the matter...this man made it happen. He brought down Miss Media into his office and pretty much said "Make it happen". It was amazing. I was so shocked about how smoothly things went, actually I was a bit frightened that the end was near. So I got his card, thanked him (with tears), and made sure that he got a picture of Faith. I mean this man didn't only make it happen, but he truly acted like he cared and was interested. He didn't approach the situation as Faith being another statistic. It was awesome! Justice for Faith!! Yayyyy!!!

So, the first battle has been won. But I know the first battle is the easiest, so the fight begins.

Ouch

Ok so you'll learn as these posts start that things that are "normal" for most kids are a big deal sometimes for me. Here's an example.

Yesterday I was at mommy's and she had me on the couch changing my diaper and brushing my teeth. Daddy pulled up so she left me on the couch to get up and run to the door to tell Daddy that it would be just a minute. I guess when I tried to get up my hand slipped off the couch and I landed upside down right on my head. Mommy and Joel (mommy's fiance) ran over to me and quickly snatched me up and sat me on the couch. Mommy was freaking out and then Daddy heard me crying hard (I don't cry very often so usually when I do, there's something wrong). Mommy and Daddy held me and calmed me down. Mommy walked me out to Daddy's truck and everything was fine.

Later Mommy called Daddy 3 times to make sure I was ok. Daddy kept telling her I was fine but it's when things like this happens that everyone freaks out. I'm a little tougher than what most people think, but I guess they worry because of my shunt and stuff. Heck I'm a tough little girl. Mommy tells me to keep that up so I can beat up any boys that try to kiss me. Course I think if any boys ever try to kiss me then Daddy would step in. Oh gosh, I'll never have a boyfriend with these two!!!