Our Routine Trip to Neurology

We had to go back to Cleveland for a routine EEG and follow up with the dietitian and neurologist. I was thinking about cancelling because July was great for Naomi then some changes were made and her molar started coming in and she went down hill. I figured we were wasting everyones time and the EEG would just be more of the same. It wasn't it showed IMPROVEMENT! She's not seizure free by any means and I knew the EEG would not be normal but I am thrilled that she's taken a step in the right direction.
I'm going to tell you all this mumbo jumbo and just play along like you understand.
There was no _________ I can't think what the Dr. calls it but it's good that it's not there. :)
There was no spikes, no seizure pattern just some spots here and there. The brain activity is slow so that's why we're seeing the developmental delays and probably has something to do with the underlying cause (unknown) of her seizures.
I told the Dr. people always ask if she'll outgrow them. I feel like, if she does... GREAT! but I'm not planning on it. I'm working towards her being seizure free at some point but for now, it is what it is. The Dr. said it's not something we can predict right now.
Naomi SCREAMED through the whole EEG, from marking her head to glueing on the electrodes. She fell sound asleep, then had to be waken because the test was done. Then she screamed some more when they took the electrodes off. The nice EEG lady made sure she got the gunk out of Naomi's hair and even combed it and put it in a pony tail.
The dietitian and I decided to go back to a 3.75:1 ratio for Naomi's diet. I think that on that ratio she is more regular in her bowel movements and that effects a lot of things for her and her seizures were better at 3.75:1 than they are at 4:1. Plus her BHB, which is the ketone level in her blood stream didn't change one bit from 3.5:1 to 4:1 so why deprive her of those good carbohydrates!
They all thought she seemed more calm and was extremely interactive and social. Actually she tried to climb up into everyones lap. Even some guy on a cell phone in the waiting room. She's all for trying out a lap and if you're near a computer where she can tap on the keyboard all the better. She kept putting her hand out at the Dr. and smiling like "hello friend". It was sweet.
I was talking to a mother in the waiting area who had a 3 year old there who saw the same Dr. we do. She told me she took her daughter to Colorado to see a Dr. about her seizures and he looked at her chart and who her doctor was and told her she couldn't get a better Dr. So back to Cleveland they went. I knew we had a good Dr., a great Dr. actually but it's nice to hear stories like that. She also said she called and talked to Martin,( the clinical nurse we used to also work with before the diet) her daughter had 4 seizures back to back and he told her to get to the ER. She told him they were 45 minutes away and he told her GET HER TO THE ER. So she threw her girl in the car and drove to the ER and when they got there Martin was there waiting on them. That is dedication! To your job and to the patients you care for.

Shopping... not so bad

I took Isaiah to Kohls to get some Levi 550s because that's what fits him best. At first I couldn't find his size so I had him try on 3 other pairs. One fit but not great. I finally found his size in 550 and had him try a pair on and they fit! YIPPEE that'over!
Bill told us to look at shoes while we were there. So that was the last thing we did. Isaiah needs 8.5 in mens. I took him over showed him the different shoes. He tends to go for the tennis shoes that look more like hiking shoes. Anyway, he saw some he liked and I said "lets see if they have your size". So I'm looking and he said "How much are these mom?"
I looked at the little electronic tag and said "$59.99"
Isaiah said "Sixty dollars for a pair of shoes!? I am NOT spending that much on a pair of shoes. I was going to tell Dad I HAVE that pair of tennis shoes from Walmart that are fine. Why fix what ain't broke!", and he walked off.
So we didn't get shoes.
I did stop and pick up a pair of jeans for Bill. Isaiah asked why we were shopping for Dad. I told him I have to buy Bill's clothes because if I don't he'll want to wait until Levi's are $19.99 again, and that is not going to happen! I told him Daddy's a little lost in how much clothes cost because he never has to do the shopping, he still thinks stuff is at 1995 prices. Like in June when he wanted Nike tennis shoes, but didn't want to pay more than $30.
Oh well, I buy his clothes and make sure he doesn't buy some tapered leg jeans. He's lost in style too! :)

Back to School Shopping

Well I've gotten the school supplies.
Pencils, erasers, colored pencils, scissors, ruler, dry erase markers, red ball point pens, 5 folders all different colors with clips and pockets. This is the first year I haven't had to buy crayons or glue. Oh, I can't forget the paper towels or Kleenex, they actually specified Puff's or Kleenex.
Now we're on to clothes. I don't buy much at the beginning of the year but a day will come where he needs a pair of jeans that fit and I'd like to have at least one pair.
In case you don't know, it's Marvel comics 70th anniversary. I didn't know until a trip to Old Navy yesterday where Isaiah picked one t-shirt out of a very large selection. They also put a reprint of the original Spiderman comic in our bag.
Isaiah now has 3 t-shirts with marvel comics. We got 2 from Target but it wasn't until our trip to Old Navy that I knew something special was going on with Marvel. They kind of throw it in your face!
I hate buying jeans for him (and for me). I don't know who they make jeans for? Isaiah needs husky, but even they don't fit right. The really skinny kids have a hard time finding jeans too. So where are all the kids who actually fit into the jeans?
When I can just go to a store and buy his jeans by waist and length I will be soooooo happy! When he can go pick them up himself, I'll be even happier!

A day at the movies

I never get to go to the movies. Bill and Isaiah went to see G.I. Joe, which they really liked, and told me about this upcoming movie. So for all of those who, like me, don't get to go to the movies and see the trailers for new movies.
Enjoy

Sunday School

I told Isaiah that Sunday school would resume in September. He said "Um, I think I'll just stay upstairs. School school is bad enough. I don't want to have to go to school on Sunday too."
We'll see about that.

Dad

My Dad had his first chemo treatment about two weeks ago.
He's still working but it's getting to him. His job is on 10 hour days plus 8 hours on Saturdays and my Dad works through his breaks! Always has. My husband works with him and takes him water and such and has tried to tell him to slow down. Even his boss has said take a break when you need to. But Dad won't let them down. If it needs done he'll get it done. I think Mom is going to contact his Dr. and get them to give him an order that says he can work no more than 8 hours a day. Maybe if it comes from the Dr. it'll take it out of Dad's hands and he can relax some.
He didn't get really sick from the chemo and actually felt a little better on days. The problem is it's just like when Naomi was on meds. Anytime anything happens it's like, OK, is this meds or is this disease? He's really emotional, maybe even depressed. He's really quick to tear up. I don't know if that's chemo or hormone treatments. I told him he sounded just like me after I had Isaiah and I wouldn't feel sad but tears would just start rolling down my cheeks and I had no control over it. He's wore out in the evenings. He told my mom he's just so tired and she told him he ought to be tired! He's 60 years old and trying to work like a much younger man!
His appetite doesn't seem to be affected. He doesn't look sick in any way.
The Clinic sent him to the heart clinic just as a precaution to be checked out and have an EKG this week. I guess there were quite a few characters there that day including an older man who kept saying "Frank is in the building". Referring to himself :)
Next week he goes to the Clinic to have a dermatologist check out a spot on his face that has caused problems for quite a while. It may be melanoma.
Then the following week he goes back for another chemo treatment. He'll go every 3 weeks. Hopefully we'll have good results.
Last Sunday in church when they asked for prayer requests it was heartbreaking! Several people with cancer, a mom with postpartum that tried to commit suicide, a family who's father had been with the same company for over 40 years and just found out the company went bankrupt. So many sad stories these days.
My cousin is about 2 years younger than me. He has a brain tumor, 2 mortgages, 3 kids and was caught in the latest round of lay offs at his job (he works with my Dad and husband).

Happy Birthday Dad

Sunday was my Dad's 60th birthday. My parents came over Sunday and I made supper. We had BBQ ribs, fresh corn on the cob, baked potatoes and black raspberry pie. Isaiah picked out the pie. I was going to make a blueberry cream pie but the farmer's market had no blueberries this week. Isaiah said "why don't you just buy one mom?". The thing is, in most places a bought pie just wouldn't be the same as home made. But here, we have Amish! Wonderful, home baker's who sell their goods for a fair price. I paid $5 for the pie. My dad loved the pie. Isaiah picked that flavor because somewhere in his brain he remembers long ago that my dad got a black raspberry ice cream cone. The kid doesn't miss a thing!

Before Dad left I gave him his cards. I guess he got a chuckle at the "present" I put in his card. A crumpled up one dollar bill. He just doesn't know what he's going to spend it on. He told mom he was going to save it. You just never know what little thing will make someone happy!

August 2 we all got up and went to church. There are plenty of churches to pick from in our own town but this is a special church. This is the church some of our extended family goes to. My Grandma Naomi had a cousin who's family has attended this church for quite a few generations.

I think the board said 49 were in attendance last week. That's the kind of church I like! I don't go for these mega churches. There's a lot of older people there. Lots of farmers. One man had an awesome farmer tan. It looked like he had white glasses on! Another man is 80 and still holds a season pass to Cedar Point where he goes several times a summer and rides all the roller coasters.

While we were upstairs in church Isaiah was downstairs with the kids. It was our first time at that church so "Uncle" Mel took Isaiah downstairs. They decorated construction paper T-shirts. Isaiah's was yellow (his FAVORITE color) and it said "Cartoon Network" on it. I said "know what he's done this summer?". That kid loves cartoons. He loves drawing and watching them.

After church was coffee hour. The church's motto is "we don't meet unless we eat". There was a nice spread of food. Way more than just coffee! There was quiche, breakfast casserole, fresh fruit, blueberry muffins and grapes in snow (brought by my mom). While I was eating Isaiah came and said "Mom. You know that blonde kid? He says he's my cousin". I told him he probably was. Mel informed Isaiah that he was probably related to 3/4 of the people in the church in some way. Isaiah smiled and ran off.

When we walked in to coffee hour Isaiah said "Wow Mel is way older than I thought". Which made me crack up! He's seen Mel a few times over the last couple years. Isaiah just doesn't remember people well unless he sees them often. Mel's actually a 3rd cousin, not an uncle. He's just 1 of seven kids so he's uncle to a lot of the kids! Plus almost everyone calls his parents Grandma and Grandpa, they are the ideal grandparents.

I told Mel what Isaiah said, he's only 46 and he kept kidding Isaiah. While in line to eat he went to grab a blueberry muffin and said "is this something an old person would eat?" and Isaiah got tickled! It ends up, what Isaiah was talking about was this photo of Mel. Isaiah apparently thought this yearbook yourself photo that I made of Mel was a real photo! He thought Mel was in High School! Thank goodness none of that is true. Can you imagine how badly he'd be picked on if he looked like this? He's actually a mortgage loan officer.

We sat and ate for an hour then headed home. It was a great experience and I'm sure we'll be back. Even though it's an hour drive.
But we sure didn't leave hungry!