This summer it's been really difficult to blog. As you know Steve has been working 60+ hours every single week this summer. We couldn't even get away for a weekend of camping. More than anything I wanted to play with my kids and do the things that I can never seem to make the time for but it just never quite happened the way I imagined it. By the time I finished my Monday Happiness posts I felt like I'd spent enough time away from the kids and had to hope that those posts gave enough of a glimpse into what was going on in our lives. And I also posted the important stuff. But I love the more frequent posts of regular bloggers. Probably I will never have time for that.
But I am hoping for more posts now that the kids are back in school. In addition Halo 4 is nearly done so Steve should be coming home in the evenings soon. Maybe even starting today. Some of the things I want to write about: AFO/SMO's, the Nova 7 communication device (Though I still have to do some upgrades and then programming that I haven't had time for, so maybe that should come before blogging. Still, I know some of you want to hear about this new communication device. ), eating/feeding & therapy as well as posting some summer photos from our picnic at the farm and our trip to the zoo. I didn't even take pictures of our day at the beach and Steve took the kids to Wild Waves, I stayed home, so there are few pictures of that.
Hopefully all that is to come but for now I'll just start with a back to school post and hope I can finish before Evie's bus comes.
She started middle school. Yes I know, my first baby is growing up. They thought they would ease the 6th graders into school by sending them for a couple hours without the 7th and 8th graders. So here is a picture that Steve took when he walked her out to the bus at 6:45 in the morning but I'm not sure if that counts as the first day of school. I'm going to say it doesn't. Since they played games and didn't bring backpacks and were back home by 11:30.
When she got home we rushed out the door to go to Ainsley's school's Open House that had started at 11:00. We were a bit late because of the overlap. Ainsley seemed right at home. She clearly loves school. She is now in Kindergarten and so that is in a different part of the school she was at last year. It may as well be an entirely different school. The classroom is close to the gym, lunchroom, bus area and playground so we had it written into Ainsley's IEP that she will be using a walker for the majority of the day. When we showed up the walker was there which was great because I was concerned they might need it at the preschool for another student. She got right into it by herself and started walking around the class.
She has her own cubby and an assigned seat at the table. This is a "learning center" classroom which really means it's special education. They have 10 students and many of the kids have an aide. Ainsley will attend with a 1-on-1 nurse like she has since she was 3 because of the trach and her high needs.
There was a little girl in her class last year who she loves. I will call her J for privacy reasons. At the Open House J walked in with her mother and Ainsley immediately recognized her and was all smiles and love. It was the cutest thing. J responded the same way and it was clear that in their minds they are "besties" even though they can't speak.
The room is very cheery and nice. It looks educational (in a good way). I'm sure the kids will be fighting over who gets to sit in this egg chair in the reading center, I know mine were. The teacher, I believe, came from special education at the high school level but she seems very enthusiastic about working with younger kids. I have a feeling that Ainsley will have a great year. In addition I met the general education teacher that is assigned to Ainsley. I believe she's British (my FIL being a Brit will appreaciate this). Next week they will look for opportunities for Ainsley to go her classroom for periods of time. I would love to be a fly on the wall the day that Ainsley first sees a classroom with 30 kids to see the expression on her face. She loves to people watch.
Evie asked if we could go to McDonald's for shakes to celebrate her first day of middle school. The tough thing about Ainsley is that she wants the same food as us but can't eat it. So I knew she'd want a milkshake but couldn't drink the whole thing so I bought one for her and none for me and we "shared". She enjoys putting table food into her mouth to taste it. I think she may have actually swallowed a small bit of french fries which was very exciting! But it was only the tiniest bit as you can see the rest were well tasted but spit out. We had the usual "starers", even though we sat around the corner at the nicest and cooincidentally most secluded table, but we were pretty good at ignoring them.
We ended up doing a little school shopping because I discovered Adrian has outgrown all his size 10 jeans. As a result I accidentally missed the first day of ballet & soccer. Sheep! And I had to pack up all the school supplies into their backpacks for the actual first day of school.
I was already exhausted and we aren't even started.
I wasn't going to buy Evie new school clothes. My plan was to enjoy the final days of summer and buy her what she needs after the start of school. Though I did buy her a back-to-school hat because it was so perfect for her. The funny thing is that her school doesn't allow hats. Bummer, she'd look so cute cruising the halls in this adorable hat. When buying jeans for Adrian she found the pefect top to go with it so she decided to wear it for the first day even though she had to take it off. My brain doesn't work too well at 6:30 am so unfortunately I didn't get a great outdoor shot like I normally would. Steve walked her out to the bus and I stayed with the other two kids.
The night before Ainsley's pulse-ox went off and I must not have heard it right away while I was working on the computer. Steve was in the hot tub. She was hysterically crying and it looked like she was trying to climb out of her crib by herself in the dark. Very scary. So I wasn't about to leave her alone even for 5 minutes....even less than a block away....even though it meant missing the send off for the first day of middle school. I was a little sad not to be there but I did get to give her a hug before she left.
Luckily it was a Carmela day for Ainsley's first day of school. It just made things easier. Together we got Ainsley ready for the bus, which comes later this year. That's better for all of us. Ainsley was SO excited to get her own backpack and lunchbox. She really didn't notice it was a hand-me-down from Evie. From Hanna Andersson, so cute still even well worn.
He looked so handsome on his first day of school.
Our new medical insurance company had been e-mailing us to log onto their website to answer some questions about secondary insurance. I assumed it had to do with Ainsley having Medicaid (she's on a waiver program for medically intensive and disabled kids) and knowing it could be complicated I called and was on the phone with them for over an hour. Due to a mix up with Steve's new employment we actually had double coverage for June which was further complicated by the fact that Ainsley has Medicaid coverage. I don't know which insurance company should be responsible to pay. That's their call as far as I'm concerned, but they wanted me to decide?! The poor guy had no idea what to do. Some situation call for a higher level employee.
In addition I had workers at the house to pressure wash our swing set so it can be treated before the weather changes (it's quite old and treating it will keep it from rotting). At the same time I asked if I could pay them to pressure wash the driveway so it can be sealed (to keep it from cracking because we won't ever be able to afford to replace it), again before the weather change. So I spent an hour cleaning out the drain gutters so he could pressure wash. Then I headed to the store to get him cash and pick up a cake to celebrate the 1st day of school.
By the time all this was done it was about time to go meet Evie at the bus. I put on my gardening gloves to pull some weeds while I waited. I started to get nervous when the bus was 20 minutes late. I went in to check the messages and grabbed the phone to call Steve and ask him if I should start to panick when transportation called to say Evie was on the wrong bus. By this time it was 20 til 4 and my other two kids were due home. They say they would drive Evie to Adrian's stop by about 4:10. Meanwhile they don't show up and Ainsley still isn't home so I call the nurse.
Ainsley is using a van transport service because the school didn't have a bus for her. I'm trying to imagine what could go wrong. It turned out another kid's bus didn't show so our driver took her home first. Why I don't know. And they didn't have her apartment number so he didn't know what building to go to. Eventually they get home but Evie STILL isn't home. And our nurse is supposed to be off duty but I have a missing child and want to hear about Ainsley's first day at Kindergarten because Ainsley can't talk so she can't tell me herself.
Adrian waits for Evie while I run into to grab the phone to call and find out where the F is my kid?! And of course THAT is when she shows up. Hysterical. An hour and a half after she is supposed to be home on the first day of middle school. Even though I'd been waiting outside the entire hour and a half I didn't get to talk to the driver and to top it off Evie thought I wasn't waiting for her. I gave her big hugs and she felt a little better.
But then I had to call transportation to find out what happened so that it didn't happen again the next day. After lots of talking with them and Evie we figured out she DIDN'T get on the wrong bus she just missed the stop because the day before the bus picked her up at a DIFFERENT LOCATION. So she thought the bus would turn down the street like it did the day before, which is why she didn't get off at the intersection. The day before there was a different driver and he turned down our road. Also, the day before she was the last kid off the bus (there were no 7th and 8th graders) so she thought maybe she would be last off the bus again this day. Until the driver arrived at the end of his route and she was still on the bus. So then she had to ride to the elementary school for his entire next route.
Thankfully Carmela stayed late so she could tell me about Ainsley's day. Which was really good.
Then it was time to cook dinner.
The weather was beautiful so I grilled and made corn on the cob, the kids' favorite.
I bought a cake beause it is so much easier than baking. I was so happy I planned something special so we ended our day on a happy note and Evie seemed to be over the trauma. I think she'd otherwise had a good day. She is very excited she has drama and art. Adrian had a great day. He likes his teacher. He was so sweet to Evie when she got home.
Then it was time for homework. Seriously.
All in all it was a good first day aside from the transporation drama.
The next day Steve got Evie and Adrian out the door. Our other nurse (for school) came and I was able to tell her all the details for Ainsley's feeding and mobility in the few minutes while Ainsley's wheelchair was being strapped down(she doesn't get paid to work in our home so communication has to happen in the few minutes before and after school).
Unfortunately Ainsley had a Pulmonary appointment in Seattle, so I picked them up at 10:30. She came along with us. These appointments always drag on. I would not have picked this date, but it was 9/6 or late November because this doctor is in high demand. We had a lot to discuss and he was running behind so it was 2:00 by the time I dropped Ainsley back at school for the last half of her second day of school.
I dropped off an overdue library book and picked up lunch (which I ate in the car and finished on the side of the road) and a few groceries and headed home to meet Evie's bus on the corner which is a 45 mile an hour road. It was sunny and very hot, like 110 degrees with the heat of the pavement. I felt really stupid standing there on the street corner for 20 minutes (naturally the bus was late) but after the previous day's debacle I wanted Evie to see me. And I wanted to talk to the driver. I was nice but let him know I'd written an e-mail to the transporation supervisor that morning requesting that the stop location be changed. I met a neighbor with an 8th grade student and she is going to do the same. Please cross your fingers for us that they'll change it. I don't want Evie crossing a 45mph road.
Everybody got home okay. My sister came over for dinner. Adrian had soccer practice. We did homework and it was time to get to bed so we can get up and do it again.
This morning Steve had a hard time getting Evie ready. He thinks she should just wake up on her own at 6:00am. Not. Going. To. Happen. Hopefully Evie's sleep cycle will be better adjusted by next week. But this is going to be tough.
The other two got out the door okay.
I just picked Evie up at the stop (15 minutes late.) Wrote a second request to change the stop location because the driver said they aren't intending to change it.
Now Adrian and Ainsley are due home and we are headed to therapy. I'm SO ready for the weekend.
I hope you had a good week and have a good weekend.