Much better day

Yesterday was a bad day for me! I was exhausted. Funny enough, Naomi's seizures were great! Only 17 very mild myoclonics all day.
Today is much much better. Except for a headache which I haven't taken anything for yet. So that'll go away. It better because my daughter is a drumming and tambourine playing fool today!
She returned to therapy at the pediatric therapy center at the local hospital where she goes twice a week. She's been getting the free therapy through the special needs school, but it's just not the same, good, but just not the same. It ends in May for summer break also. The therapy center is year round. She was very happy to see her therapists and had a good day.
We got to go back because... I emailed the public health nurse and asked if she could check the computer and see what the hold up was with her therapy being approved through the state headquarters. Seems the state, like everyone else, is enacting budget cuts and is encouraging people to take an early retirement, but not filling the vacant positions. So the whole BCMH system is backed up 16 weeks! So it was really a miracle that we got approved in 3 weeks. But there's a catch... The neurologists office which has to ask for the therapy only put occupational and physical therapy on there. Now I have to start all over to get speech approved. But I did call our insurance company to see what was what. They originally told the girl who takes care of insurance claims that Naomi gets 52 sessions and that's divided between all 3 therapies. Well, either something changed or they told one of us wrong. I called yesterday and they told me that PT and OT are combined and she gets 50 sessions of those. Speech is separate and she gets 50 sessions of that. Do you know that a 1/2 hour session cost $150? Yeah! That's why I was so worried about running a bill up quick. In one week we incur $900 worth of therapy cost!
Last night Naomi slept from about 10 p.m. until 6:45 a.m.! I woke at 4:30 and was happy to see we made it past 3 and she'd probably keep sleeping! I feel much better today! She even fell asleep on the way home from therapy at 10 this morning! I'm still hoping she'll take a bit of a nap before her brother gets home from school! I am taking her to be weighed and measured today at the pediatricians office and will be glad to know what those numbers are.
But for now, the sun is shining, it's decent out with just a chilly wind. Tomorrow promises to be a better day! They're talking about it hitting the 80's this weekend!
After tomorrow my husband is laid off of work for one week, I don't know if that goes in the good or bad column! HA! I'm sure it'll change columns as the week progresses! At least he'll have good weather. Warm and sunny for the next 5 days! There's grass, actual green grass, to be mowed!
Ohio weather! Frost on the cars today, 80's tomorrow!

Resentment

Today I'm feeling resentful. It's set off I'm sure by complete and udder exhaustion.
Yesterday Naomi woke at 3 a.m. and stayed awake until 4:30 then fell back asleep until 6:15. She's slept 8 hour nights for quite a few nights so it was especially hard to adjust. Then this morning she woke at 3 and stayed up until 6:30! Of course then I had to see to getting her brother's breakfast, but after that was done I went and laid in bed. Thankfully he's a good boy and old enough to get himself ready for school. That's just what he did. Showered, brushed his teeth, got dressed, let the other kids that wait here until it's time for school in and then got them all off on time to walk to school. Thank goodness!
I had a hair appointment at 9 a.m. and was so looking forward to getting my hair done and for one day not having to do it myself. Plus my hair grows extremely fast and it's really needing cut and it's really thick and it's supposed to be near 80 this weekend and my head will be hot! I had to cancel my appointment. Naomi slept until 9. If she'd have woken up 15 minutes earlier I could have made it to the appointment. She'd have been in her pajamas, but what the heck!
I know it's a little irrational, but I'm a little mad at her for me missing my appointment. It's the only thing I get to do for MYSELF all month long. Unless you count my dental exam a few weeks ago. But other than that this is it! It's not like I get a mani and pedi or anything! It's just a hair cut. I don't even have her shampoo me, I go with a wet head.
Naomi kept bringing a book to me this morning and I just couldn't help it, I did not want to read to her. Of course she's like a fart in the wind and was on to something else right away, so she didn't suffer from me not reading it.
I did reschedule, but the girl is really busy and I can't get in until May 4! My husband tried to console me by saying that's not too far away. I told him to just be ready to hear me bitching about my hair for the next 2 weeks!
She's got speech therapy today at 2:45 and I told Bill I may have to cancel it. I just don't feel like I even have it in me to be polite! Plus if she's up for a nap about that time! I'm ready!

Jack

For some reason this morning I was thinking about an uncle of mine who died in the late 1980's. He was a nut! Alcoholism contributed to some of that but even completely sober he was a nut. I remember sadly that when his daughter, who is the same age as me, was in Jr. High. A school counselor talked to her and told her to put 3 things in order of how she felt things were important to her father. She listed #1 work #2 alcohol #3 family. In a way since I've grown I can see that because he worked everyday, even being an alcoholic, showing up daily and being a productive worker, he was doing that for his family. When he died he had insurance on everything so all his debts were immediately paid. So his family was higher on the list than she thought.
When he died he was in his car, not far from home, driving to the cemetery on Christmas Eve to put a battery powered Christmas tree on his parent's grave. He had a heart attack at the wheel and ran straight into a tree. When we got the call my parents went straight to his home. His wife is my dad's sister. He and my dad worked together with at least two of my other uncles. I stayed home and the phone kept ringing. Apparently his death had been announced over the local radio and men he worked with were calling our house. I'd answer and these grown men would be crying on the other end asking me if it was true.
The company my husband works for and the company my dad works for merged and everything was moved to one facility. So now my husband works with all these men that once knew my uncle Jack. My husband said he's like a legend or something! He still hears stories about him over 20 years later!
My Aunt told me once that they had a telephone number just one number off from the local country music station and they continually got phone calls for song requests. When my uncle would answer he' d say "what do you want to hear?" and when they'd put in their request he'd sing the song loud and proud.
My Dad and he went Christmas shopping once and Jack decided my Aunt needed a bra and kept telling my dad "come here, you try it on. If it fits you it'll fit her!" and tried his hardest to get my dad to put that bra on in the store.
When the men would get together outside of work to help a friend bale hay or something like that here would come Jack with doughnuts and orange juice for everyone.
Once for Christmas I remember he gave me a bunch of little Avon bottles of perfume, the year he died I believe.
One time he was drunk and the cops went to his house and he told the cop if he came up on his porch he'd throw him right back down. The cop came up. Jack threw him right off.
He was very kind and thoughtful. Alcohol was a terrible problem in his whole family. His father drank and all his siblings. It's a sad thing. The Christmas tree on his parent's grave wasn't the only decoration he put on there. At Easter he decorated with a plastic blown up rabbit! Can you imagine! What men think of doing stuff like that for their long dead parent's!

Rejection!

It's Spring clean up time in our neighborhood. The time of year you get to see what kinds of pigs you live near! There's some rental houses across the street and if you saw what was curbside over there you'd wonder how it all fit in the house. I mean there's a ton of stuff!
Then there's us. We generally don't have much exciting. Yet I hate to put my poor stuff out there and wait as the "pickers" come by.
So many people circling town picking through the clean up items. I sit here looking out at the window. Waiting. Watching for someone to come by and look at my stuff.
Monday was the first day and I set stuff out late. An old wood door that was on the house when we moved in. Three of the four doors in this house had doors so old the original locks used a skeleton key! I also set out an old aluminum storm door and 2 old mop handles. That's it. Everything else I got rid of through out the year.
I went upstairs Monday to lay down with Naomi for a nap and she fell asleep on my chest. So when I heard the clip clop of horses hooves pull up I knew what it was. It was the Amish "pickers" looking through our stuff. It was killing me that I couldn't get up to see what they'd take.
When we woke I didn't see anything gone. Then I spotted them! An Amish couple parked across the street.... with my wooden door on top of their buggy! OOOOO the satisfaction at being picked. It's like gym class in elementary school, I want my stuff gone quicker than the neighbors. Plus, the city is always late picking the stuff up so better for "pickers" to get it early in the week than for it to lay in the front lawn !
Bill carried an old air conditioner down there Monday afternoon and has it in a black trash bag! That's not proper merchandising! He said he was surprised it wasn't picked up yet. I told him it would be gone if it wasn't covered. He said he didn't want it to get wet. HUH? Why, it's JUNK! Who ever takes it will be after the metals in it not the unit itself!
I was so hoping to get a photo of an Amish buggy with multiple mattresses piled on top! It's been raining though so I've only seen 1 and I was driving down the road when I saw it. It is a funny site. A little black buggy with as many mattresses as possible piled high on top! Usually more than I'd even put on our pick up!
What always gets me is the wives that ride along. There is no way I'd do that. When I was 17 I had a boyfriend who wanted to drive around and look at that stuff and I was so embarrassed! I only dated him 2 weeks, it was doomed!
I've tried to tell Georgia, our neighbor lady, to set a lawn chair out and wait for the men to come to her! There's some real lookers out picking through junk. Beer bellys, ripped flannel shirts, holey jeans all in rusted pick up truck! Be still my beating heart!
This time of year reminds me that the only difference between a garage sale and trash is how close it is to the curb.

HAPPY EASTER!

I'm Casual

Last night I ran out to a city larger than ours to get some last minute Easter stuff and just left. Didn't even pay attention to what I was wearing. I had on a pair of sweat pants and an old Cleveland Indians hoodie. Thankfully it was opening day for the Indians so maybe I could get away with that.
I was thinking that on a weekly basis people ask me who cuts my hair. My hair is all I have left! It's thick and healthy. I told the girl who cuts it she should shave her number in my head and she said it grows fast enough she could!
You know no one ever asks....
Where did you get those sweat pants?
Where'd you get that shirt with bleach and/or grease stains?
Where'd you get those orthopedic tennis shoes?
No I'm not concerned with fashion in the least. When it's time to walk out the door I just go. Try to match at least, but other than that I could care less.
I see women at the library with their kids dressed to the 9's and think WHY?
I watch What Not to Wear and think what's wrong with walking the dog in holey jeans and a t-shirt from high school. I mean what is proper attire for picking up dog poop? The outfits they suggest for running to the grocery store! Give me a break! Who cares! As long as you're covered appropriately and clean!

Better and Better

I took Naomi down to 400 mg twice a day on Keppra, the only drug she's currently taking. She just gets better and better. I dropped her down to this dose last Sunday and Tuesday her occupational therapist Anna was like "Wow, we had a great day". She's more interactive with her brother, who thinks it's sweet and gross. He hates when her spit gets on him. Her sleep is better. She's slept through the night until 7 a.m. quite a few times. Today she was up at 4:30 and that seems to be her other waking time. If I can get her past 4:30 we're fine.
Her ketones are all over the place in the morning. Today they were only 5 and that's over an hour after she'd had a meal. They want them to stay over 80 ideally I guess. That just makes me wonder if it's the diet that's helping or not.
Her seizures are better. We're going a lot of days with no cluster at all. Twice now we've only seen 8 myoclonics all day and they were all very light. The other days are still good, staying below 25.
So it seems we're on a good track. Just wish I was more confident that it's the diet that's doing it. Since her ketones are all over the place I'm wondering if the Keppra wasn't just aggravating the seizures.