School Days, School Days

The boys have started a brand new year at school. Ethan has a new school (Lydiksen Elementary) and all new teachers and aides and a curriculum that is much like a regular first grade. Dylan is in a new class room at Vintage Hills, with a new teacher and all new aides and a curriculum that's similar to last year's but a grade up. Tod took Ethan to school this morning and said Ethan seemed stunned, but was going with the flow and had started coloring his envelope (envelope for what, I don't know). Dylan started saying "no, no" as soon as I stopped the van in the drive way at school. An aide came to help him into the classroom but Dylan tried to get back in the van and push me in with him. I didn't see any tears or meltdown behavior as I drove away... not from Dylan anyway, I was a wreck. When school is done I will pick Ethan up instead of him riding the bus as we had planned. It is an 1-1/2 bus trip for a 10 minute car ride. There's no way my 6 y/o autistic child will sit on the bus for that long. I will be calling the bus co. when I am done with this post. Dylan, alas, will be riding the bus and I hope he does ok with that. He has been used to me being there everyday when school is done.
And so starts the first day of another school year.

Tod and I are still limping along. My kidney pain is worse than ever and I can't wait for Friday when they blast these stones apart. Tod's back is better, but he keeps rehurting it trying to make up for the slack of me either being in excrutiating pain or drugged to the gills or both. Plus the boys have been particularly rowdy and winy. We pretty much just get as little done as we can get away with and then both of us collapse in a fetal position. I'm interviewing a new respite worked this after noon. Maybe she can pick up the slack. But I digress, my point is to apologize to everyone we've neglected while we're crippled up. I've not kept up with emails, birthdays, anniversaries, phone calls. It should get better soon. I'm trying my best to keep the blog up to date so you can at least check in and see that we're alive.

til later....

The Next Step

The neurologist wants Dylan to have a blood test to check his Depakote levels. After that we are supposed to take Dylan back into Stanford for an appointment with the doctor. Maybe we'll get some answers then. At least it will be better that playing phone tag with the nurse!

til later...

Conversation with a Nurse

Tod talked to the nurse practitioner at Stanford this morning. She confirmed that nothing showed up on the EEG. She is going to talk to the Neurologist and he may suggest a 24 or 48 hour EEG. I don't know if this would be at the hospital or if they would just strap a recorder to Dylan like the last time he and Ethan had a 24 hour EEG. She did say that we should start a log of the episodes and if he starts to turn blue again we should definitely call 911. Tod said she seemed a little perplexed because it didn't fit into the "mold" of a typical epileptic seizure. We visited Dylan's new teacher and classroom today and I made sure she was aware of what was going on. The summer school teacher who first noticed the seizures was there today, too. She said she had been thinking about Dylan all summer and how scarey it was when the seizure happened in her classroom.
In the mean time, we are busy trying to get ready for school, working out bus and driving schedules, meeting new teachers, visiting new schools. Ethan seemed to like his new teacher and already had a chance to play on the computer and check out the playground. Dylan already had a meltdown in his new classroom, so we're off to a great start there. Actually it's probably a good thing for her to know what she's getting into. She has a background in behavior therapy so I think it's a good match.

til later...

Frustrated!

The nurse practitioner Tod talked to today said that the EEG looked fine. Tod asked her what we were supposed to do about these episodes...what are they? She wouldn't say anything else, just said we had to talk to the other nurse practitioner tomorrow. Should we be relieved? I'm not. The school staff, the tutor, Tod and I have all seen him do this. In fact he had two more episodes this morning with the tutor right after Tod told me what the test result was. I'm still scared and frustrated and not too confident that I will feel any better tomorrow.

til later...

No Word Yet

We haven't heard anything on Dylan's EEG. The technician who did the test yesterday said we would have the results today. But the receptionist in the doctor's office didn't think they would have them that quickly when Tod called today. My guess is that they have the results, they just haven't had time to read them. Either way I hope we will know something tomorrow.
Tod just got home from work so I'm off to find some major drugs for my kidney stones.

til later....

Dylan's EEG Today

Dylan had his EEG at Stanford this afternoon. He had to be sleep deprived for the test so we had to keep him awake until midnight last night and then wake him at 5 am this morning. This meant mom and dad were sleep deprived, too. It was a real challenge keeping him up until his test at 1pm this afternoon, especially during the 1 hour drive there. The nurse said that he absolutely, positively could not fall asleep before the test! So I sat in the back seat with him to make sure he didn't nod off. We read books and sang songs, ate cookies, but soon his head started nodding and his eyes were closing. We were both shouting "wake up Dylan!" Nothing worked! I had brought a bag of baby carrots along for me to munch on. Since they were cold and wet, I started touching Dylan's face and neck with them and still he wouldn't wake up for more than a second or two. So I started putting the carrots down his shirt. Well, that got his attention! He didn't like that at all and he couldn't get the carrots out of his shirt because of the seat belt and that really made him mad! But it kept him awake until we got there and that was the purpose. He did great for the EEG. Such a big boy even with all the long waits. And the good news is that we should get the results sometime tomorrow. So right now Dylan still has the goop in his hair and we are hoping that both boys will want a nap so we can nap, too. I'll keep you updated.

til later.....

Geology Report

There has been so much going on, I haven't brought you up to date on the kidney stone situation. The CT scan showed 5 stones in my right kidney and 2 in my left. I'm having lithotrypsy done to both kidneys on Friday, Sept. 2. It's an out patient procedure. Then I'm supposed to "take 5 days off"..yeah, right! At least it's a 3 day weekend so Tod will be home to watch the boys.

I'm getting really nervous about school starting Aug 29. Neither of the boys has met their teachers, yet, or seen their classrooms. In fact we still don't know what time Dylan starts school in the morning. Some schools start SpEd classed at a different time than the rest of the classes. Plus we probably won't know anything new on Dylan's seizures since he's not having the EEG til the 22nd. And I'm nervous about that, too. He's had at least 2 more seizures since the one that happened while the tutor was here.

Not much else going on here. The days are a little cooler and the evenings and morning are actually quite chilly. Tod is still working away. The Hannspree store in San Francisco should be opening on Sept. 24. They are also looking at putting certain models of their designer tv's in national chains like Best Buy and Target. We're still waiting for ours, but we're not holding our breath. Actually, we'd be happy with some extra time off around the holidays so we can come back to Rockford for a long holiday weekend. The Taiwanese are not that, how should I say it, they're not very generous around American holidays. So we'll see. I'd at least like to go to Tahoe or somewhere where there is snow. Last christmas was really very depressing and I don't want to do that again.

til later....

The Afore Mentioned Sock Monkey....

.... and my sister, Gerrie!
(She always liked tall men)

It's all about me...

and my trip to Rockford! I had such great time and it was wonderful seeing family and friends. I miss everyone so much. Saturday my sister and I went shopping for Mom's party. We always having a good time when we are together, especially when it comes to making purchases. We always encourage each other to do the right thing and Buy, BUy, BUY!
Saturday night I met "the usual suspects" at Linos for dinner. Tim and Maggie, Nancy and Jeff, and Keith. Marie was busy and Chris had just had hip replacement surgery and couldn't make it. I love Linos pizza and Tod and I miss it terribly. We have not found a good pizza place in Pleasanton. I ordered a whole pizza and then wrapped the left overs up with ice packs and brought them home to Tod. After dinner we went to Tim and Maggies for dessert. We sat in their back yard and talked and laughed. It was great. I felt bad that Tod had to miss it. I know, it sounds like an international coffee moment or miller time. But when you're in a new town and too busy to make new friends, you realize how important time with friends really is.
Sunday was party day for mom and can read all about that in one of the previous posts.
Monday was a great day, too. I had breakfast at Stockholm Inn (swedish pancakes...yum) with Julie Anderson and Bev Cicolello, Dylan and Ethan's preschool teachers. It was so good to see them and catch up on each other's lives a bit. I really miss having such caring and knowledgeable teachers for the boys. I can't say enough about what they have done for our boys and our whole family. California may have some great programs and wonderful opportunities, but so far I've not met one teacher with the capacity for teaching and caring like Julie and Bev.
Next was a hair cut with my hairdresser, Kim. Since I've been in Pleasanton, I have had two trips to the hairdresser and spent $400 for hair I hate. I could have flown Kim to SF, had her cut my hair, and then taken her out for dinner for that price. It was nice to catch up with Kim, too. And, as it turned out, her next client was the daughter of the OT the boys had when they were 2 years old. Dianne had to quit working with the boys because she was pregnant with the little girl that was getting her hair cut!
After the new and reasonably priced do, Nancy picked me up and we went shopping. My favorite kind of shopping. Goodwill, Salvation Army, Hobby Lobby, the Dollar Store. It was shopping heaven. Nancy also took me to eat at Mexican Chipotle which I love and am still trying to pronounce. It was fun to catch up on Nancy's projects, ideas and plans for the future. She always has a new idea or three or four and is looking ahead for a good non-retirement retirement job. She brought my mother and I each a really neat "book thong" with silk ribbon and beads and charms. She's made 50 of them so if you want one let me know. I used mine in my Harry Potter book that I read on the plane.
Tuesday I spent the day with Mom since that was her actual birthday. We shopped at the mall and Mom found a new outfit for herself and a shirt for Lou. Later Tim came by the house to say good-bye and that maybe he and Maggie might be able to visit after the first of the year. Lou came home and took Mom and I to Linos for mom's birthday dinner. Twice in a weekend at Linos was a nice treat. I got to have lasagna this time - Yum!
Then it was time to pack and get ready for the bus to the airport in the morning. It was such a wonderful trip. Tod and I are talking about trying to come back at Christmas with the boys. Last Christmas was so depressing, if we don't get home to Rockford I told Tod he had to take us to Tahoe or someplace were there would be snow to play in. Anyway, we might be home for the holidays!

til later.....

Dylan Update

Dylan had another seizure yesterday morning while the tutor was here. She called me into the room saying there was something wrong with Dylan. He had been chattering while they were working on a number puzzle and he just stopped and stared at the wall. I called his name, held his face so it was facing me and it was just blank. I hugged him, tried playing with him, nothing worked. He was "gone" for 4-6 minutes. He also started turning blue around his mouth and nose. It was so scary. Slowly he came out of it, seeming somewhat confused and smacking his lips. After he sat for a bit with me he asked for chips and then curled up on the sofa and slept for two hours. From what I've read, I don't think we're dealing with Petit Mal seizures. I think it's a different kind and it looks to me as if Dylan may have epilepsy. The EEG isn't set until Aug. 22nd. So we won't know anything for sure until sometime after that. All we can do until then is keep a close eye on him and make sure he's safe. Seizures of this kind aren't fatal, thankfully. If that is what's going on.
Anyway, we appreciate all your positive thoughts and prayers for Dylan.

til later....

The Queen Mom's 80th Birthday!

Mom had a great time at her 80th birthday party! Gerrie and I adorned her with a crown and scepter so she could "hold court" on Sunday afternoon. We decorated her house with fresh flowers and pictures of mom when she was a little girl and a (beautiful) young woman. The guests enjoyed looking at the pictures almost as much as mom did! And so many people showed up, we hardly had room for all of them. There was talking and laughing and it seemed as if everyone really enjoyed themselves. There was still a lot of food left over, though, but with me staying there the cake at least was finished off before I left!
Later that night after everyone had gone and everything was cleaned up (thanks to Lou!), the three of us were so tired but didn't want to end the day quite yet. We started talking about the giant Sock Monkeys in downtown Rockford. For those of you who don't know... Rockford is the home of Nelson Knitting which made the brown socks with red seams called "Rockford Socks". In the early 50's they started making stuffed monkeys out of the Rockford Socks. Anyway, Rockford now has 6 ft fiberglass Sock Monkeys, decorated by local artists, scattered around downtown. Much like the cows in Chicago. My sister was leaving the next day, but really wanted to see the monkeys. So at 10:30 Sunday night, Mom, Gerrie and I hopped in the car and drove downtown to find the monkeys. We found three of them near New American Theater, so we parked and took our pictures with the monkeys! I hope to have copies of them soon and will post here so you can see what I'm talking about. Anyway, we all felt like school girls sneaking out at night to do something naughty! It was a great ending to the day!

til later.....