Sep 20, 2011

Ainsley's First Day of "School"

Ainsley was finally well enough to start school. I went with her to train the new nurse that will go with her the other two days that our nurse doesn't. It was a really great day!

Every single day Evie and Adrian give Ainsley hugs and kisses before they leave for school. There is no shortage of love in this house and Ainsley gets the "lion's share".

Ainsley got a new chair over the summer, it was delayed by months due to red tape. I'm really pissed bummed that the manufacturer came up with upgrades (recline and a flip-up foot rest) during that time. If only our supplier had known we could have sent it back unused and got the new model. Grrrr! The improved design would have been much better for Ainsley's needs allowing us a sanitary place to change her diaper in public and make it easier to transfer in and out of the chair. Anyway....Ainsley didn't seem scared like she was when she rode in a wheelchair during her second spica cast. But she did tell me at least 5 times with gestures that she wanted to sit in the seat with us instead of the chair. If they had a better pushchair at school I might just continue "walking her" onto the bus.

She was so excited to be there and waved at her teacher and her special friend "J". There was no question she remembered everyone which was really cool to see.

  The buzzing bee says hi to all the kids.

An aide helped Ainsley stand for circle time during which she clapped her hands to the music.

During the shaker song she really paid attention to what other were doing and shook her shaker slowly or fast when she was supposed to. She even switched from right to left hand. I could see the wheels turning. It took her a little longer to execute, but she did it and all by herself. She's come a long way! I have an adorable video but it's too big to upload to YouTube.

Don't you LOVE that the shirt is her blog title? Happy To Be Me. That she is.

When it was time for recess she wasn't too excited about using their walker. It doesn't have a sling and she is used to that security so she has to be careful and she was scared. It's a bit on the small side too, but I was pretty impressed with how well she did navigating. But she is a little tall for it so they are going to locate a bigger one with a sling. I'm all for challenge but I worry that she'll fall and they won't catch her in time.

She made her way over the the rock pit (a safer version of a sandbox) where she was able to sit on the edge and dig in the rocks. She was happy about that. 

She got her new AAC device (Augmentative and Alternative Communication). She REALLY REALLY likes it! I think she is much more motivated to use it than the Vantage. It's an IPad with a text to speech software on it. The one they purchased is called TouchChat HD. There is mention on the page of Saltillo which is a company that makes dedicated AAC's.  So far we are pretty impressed but there are some bugs to work out, which is probably the difference between this route and the machines that are many thousands of dollars. I'll post more in depth info on this another time. The GREAT thing about the IPad route is that people are drawn to them because they are so cool. It really normalizes the use of a speaking device. Ainsley's brother and sister are jealous.

It was a full day and wore the little ones out. The schools here have short days on Wednesday and that means no preschool. It's kind of nice, that way we have 2 mini-weeks. It was a great start to what I think is going to be a great year!

On that note I was happy to complete our pages commemorating the kids' school years. 

It was pretty cool to see how the kids have grown over the years. These display frames are from Creative Memories. Evie and I are having fun making seasonal displays for our entryway. And yes, to all 4 sets of grandparents, this is why you finally, after all these years, received copies of the kids' school photos. 

My nurse had to call out for a death in the family so I am going to be training someone new for Friday and because I found out the new nurse has a vacation planned for the first 2 weeks of October. I was SO excited to get all the kids back to school and finally get into a routine and get some things done, but it looks like that will take a little longer. Just a little heads up to our local family and friends we have decided to have a party on Sunday October 16th so SAVE THE DATE. We'll be celebrating Ainsley's 5th birthday and Steve and I's 15 year wedding anniversary (In January that's 20 years together. It's a miracle, Amen!) and the recent purchase of our "disabled friendly" home.  Looks like it's going to be another busy month.

Sep 18, 2011

It's Snot Been Fun Around Here

FINALLY my cough is a little better. Not 100% gone, but better. I can function. And sleep. Except Ainsley caught whatever this terrible thing is and was not well enough to start school this week.

The worst thing about trachs is that the stuff that you normally cough up instead goes up into the trach tube and if the person coughs hard enough "trach snot" goes flying everywhere! All parents deal with snot, but when a trached child gets sick the snot is on a whole other level. Imagine your child sneezing a huge super-snotty sneeze all over your face. Unfortunately, with a trach, that happens regularly to me.  Normally you use a suction machine to suck the gunk out of the trach but it often comes out of nowhere with no warning what-so-ever and there is no way you can be quick enough on the draw. I hate it when Ainsley is sick. And this virus has been especially bad. Her blood oxygen levels have been low at night and she's needed a lot of care during the night which interrupts our sleep. Steve and I take turns but we still wake up constantly. She has not been able to wear her cap and not been willing to eat even a little orally and that has been very discouraging about what that means for any chance of a trach free future.

Now that she is doing better Monday should be her first day back. We are excited! And ready! I can't wait to try out her new communication device. I took the Vantage back to Seattle Friday. A huge thank you to Ananda for letting us borrow it for an extra 6 months so Ainsley didn't go without.

Evie had her first first soccer game last Saturday. Adrian's was cancelled. We have soccer games every Saturday from now until Halloween. A soccer mom is something I never thought I'd be. Along with a lot of other things I never thought I'd be.  Here are our first soccer pictures. Probably there will be many to follow.

Since the team didn't have their uniforms for Evie's first game I'll just post photos from their second game. Evie's number is #1. I don't know if that is good luck or not.

I love that Evie is a ballerina who is getting a chance to play athlete. It is so good for her!

Another photographer and I swapped lenses. I was thrilled to try out his zoom which I used to shoot this picture. And he got to try out my L series lens, which in my opinion isn't all that fantastic.

Of course now I want a new lens. But since we just had to spend thousands of dollars we don't have on maintaining a few of the hundreds of trees on the property of our new house I don't think camera gear is in the budget.

I love this tradition of the opposing teams congratulating each other for playing well.  Little did I know when I signed Evie up to play with this team that there was another team with girls from her school and she played them here. So some of these girls in pink are her friends from school.

Whatever this tradition is it looks like London Bridge to me. 

This is what Adrian does when I ask him to smile for the camera. So instead I'm forced to take candids.

Adrian's in the middle about to kick the ball. Of course, for their first game (since their real first game was rescheduled) they were playing orange and they are orange so our lucky team had to wear blue "pennies" and that was a big ole pain in the you know what (imagine 8 year old kids having to take their "shirts" off to hand it over to the replacement player) and it kind of ruined my pictures.

Adrian playing goalie. The goalie has to wear a different shirt. Boy that confused us. The other team forgot their goalie shirt so they were wearing a blue pennie so it looked like their goalie was our goalie. Good grief, like I'm not already confused enough!!!

Ainsley has been enjoying the games. Ahhh, she's so CUTE! Though I can see that when the weather changes things are going to be difficult. A muddy field and a wheelchair is not a good combination. Plus wind, rain and cold aren't so good for kids with trachs.

Stay tuned for news of how Ainsley's first day of school goes.

Sep 7, 2011

First Day of School

I am SO SO very TIRED of coughing. It messed up our Labor Day weekend. Even though I stayed home and sent the family to various barbecues without me. I'm STILL not over it. Moms can't afford to be sick. It's a real drag. Still I did play a couple rounds of badminton with the family. We couldn't do THAT in our old yard!

Ainsley is slowly getting over her dislike of grass and had a blast crawling around. It's not easy to play badminton with a child underfoot and she wouldn't stay put, so I brought out my bag of tricks.

She loved it and it kind of worked and kept her from getting trampled. Evie and Adrian decided she needed some stuff in her house to make it more real. Like a vacuum. LOL!

Steve is making progress on the swing set area. The landscape fabric is down we just need to bring in the new wood chips. I can't wait for Ainsley to be able to finally use the tire swing we bought for her last year.

Back to school means....haircuts. This boy's hair is thick and grows like crazy. He HATES getting his hair cut. So fun.

Steve is my alarm clock and he woke me up late. The kids were lucky to get lunch, I barely had time to snap pictures and had to go to the bus stop with no makeup. Of course all the other moms looked fabulous for the first day of school. Thanks honey!

I LOVE LOVE LOVE that the bus stop is right on the corner. The kids were sad because they thought we would drive them for their first day like we used to (because we had to). It was different sending them the first day on the bus. I do miss being part of the experience of the first day back to school but I'll get over it. They both had a great day and like their teachers.

Preschool starts Monday for Ainsley and we are working out arrangements for a nurse to go with her the other 2 days that our nurse doesn't work. My fingers are crossed that it's somebody good. She's going to go on the lift bus so she has her wheelchair at school. I still haven't heard from the driver. We never got our AAC, but I hear it arrived and the SLP is getting training on it as we speak. Ainsley loves school and I'm excited for her. We are ready to get back in the routine even if it does mean getting up earlier. I am not, and have never been, a morning person!

This weekend the kids have their first soccer games. Yesterday I spent over an hour in the car driving Evie to and from soccer practice.  I've never enrolled the kids in team sports until this year. I thought it would be "too much" on top of having a special needs child with medical issues. I thought we were ready but I hope I wasn't wrong.

This is Evie after her first day of school and soccer practice. I felt about the same. I guess I should be happy that the mini Pillow-Pet comes in handy for something. Luckily she perked up after eating. I went to bed early.

I think Ainsley is hoping to play soccer too when she "grows up".  She's been fighting with the kids over the soccer balls. I need to buy her a ball of her own. Earlier this week she "said" she wanted to dance like Evie. Cutie! Hopefully her desire to be like the big kids will motivate her. I secretly hoped she might be walking by the time school starts, but it looks like that isn't going to happen, and probably not by her 5th birthday either which is just around the corner on October 18th. But I have hope that she will by the time she starts Kindergarten next year. I think this is going to be a great year for Ainsley.

Sep 2, 2011

Final Days of Summer

Last weekend we had visitors. Our dear neighbors from Seattle. I was really happy the kids got to spend time with them before the summer was over.

They always play so creatively together. Evie had it all planned out and luckily our overnight guest agreed on her choice of play.

They would put on another Pokemon show. This time it would not be a contest so thankfully, no tears for the losers. They came up with the whole idea, costumes, props and choreography.

 Ainsley especially enjoyed the show. 

During the day while they prepared for the show Ainsley benefited from their scheming by playing with bubbles.

It was so much fun to sit on the grass and photograph her having such a blast. By the end she was covered in soap!

Steve is still working on fixing the swingset area.
He put in a drain to deal with the standing water in the area. We'll be working on it again this weekend. Covering the area with landscape fabric and bringing in new woodchips next week (I hope.). We are rotating the swing set so we can use the end to mount the tire swing. It will be great for her to be able to swing with her brother and sister. It's good vestibular stimulation. Did you know that? Swinging counts as therapy.

I always thought it was just fun.

Little missy has been asserting her will in unexpected ways.... 
..and communicating more complex ideas and desires. For example the day this week she got mad that I took the pulse-ox off and she asked me to put it back on so she could take it off by herself. She wants to communicate more. It's very cool to see these changes. I pulled out her communication device and she is definitely better able to navigate the menus. I'll be excited to finally get her new communication device when she gets back to school.

I've had a nasty cough, that I picked up from the kids. So Thursday when our nurse was here I took part of the day to just relax on the patio. It didn't help the coughing but it was good for the spirit. I so seldom take time to just sit. Evie was happy to have my undivided attention to watch her dance. 

Adrian ran the sound and played with the "Darth Vader" effect on the tape player.

She loves to make up dances. I did the same thing when I was a girl.

To be fair, then I watched Adrian work on his soccer skills.

It is great to slow down. This boy has some killer eyelashes.

I spent a lot of time torturing my children with my camera. Worth it, I think.

I gave Evie and Adrian boxes of Artist Trading Cards. They loved them and spent a whole day drawing pictures on their cards. I'm impressed with their artistic abilities and it sure beats playing Wii or PlayStation for the umpteenth day.

Ainsley had a blast "painting." All you do is brush the picture with water to reveal the paint. This is a fantastic activity for special needs kids. She can work on brushing without making a giant mess. Spilling water doesn't count, right?

The kids have been having a lot of fun together these last days of summer. When they built a fort under the table I almost wanted to be a kid again.