Summer Days Here At Last!

Last week Steve had his first business trip for his new job (which so far is great). His office is in Bellevue but the bulk of the company is in Northern California and this job will require some travel there. This first trip was 4 days because he needed to have meetings with everyone. Hopefully future trips will be shorter. Since I was already sick the timing wasn't great for me.

 

Normally we share Ainsley "night duty". She often wakes up because of the oximeter probe alarming (like a hospital monitor) or the humidity mask (to provide normal levels of humidity to make up for the trach) which can make her hot or uncomfortable.  When she is sick (like she has been) she sometimes needs a lot of suctioning. Since Steve was gone and Ainsley was also sick I didn't get great sleep,  and it's hard to get better if you are exhausted.

 

My plan for the summer is to use one of my two nursing days to run errands and the other to have some time with Evie and Adrian without the distraction of Ainsley's care. It's not easy being the sibling of a medically complex special needs sister. Yes of course it builds character, but still. I think this will be good for them. Some days the nurse and Ainsley might come with us depending on what we are doing. I feel a little bad the times I leave Ainsley but her nurse is really good about playing with her, so she has fun and really doesn't mind being left behind.

 

This week I didn't feel up to much of anything but my friend Christy gave me the idea to go see Monsters University.

 

Ainsley doesn't do well in movie theaters. We've only taken the kids to a handful of movies in the theater so it's a treat to them. Afterward we went and got some special charms for necklaces at the neighborhood craft store. They had SO much fun. It felt good.

I generally try to avoid too much of this. (Everybody plugged into a different device.) Lately Ainsley's been stealing Evie's IPod if she's not watching a show or using her AAC. It's getting harder to police "screen time".  I have to admit though that when I'm sick I love these little screens.

 

Steve came home Thursday night and since it stopped raining we desperately needed to get out in the yard to do yard work.  After he mowed he setup the sprinkler for the kids.

 

 Even though we came in before dark the night before she got badly bit somehow. She had about 10 of these welts. I could tell they were driving her crazy. Poor kid. She reacts quite strongly and she doesn't have the motor skills to scratch (effectively anyway but maybe that's good) so she would ask me to scratch them over and over. (I gave her a dose of Benedryl to calm the allergic reaction and it seemed to help.)  Despite not feeling well Ainsley wanted to get in her swimsuit and go out on the lawn.

See the bracelet? That is supposed to repel mosquitoes. It smells. I got it last year but she would take it off. After explaining it again and having been so badly bitten she seemed to "get it" and kept it on. And she didn't get get any more bites so maybe it works.

 

The kids got so cold from the sprinkler that they wanted to go in the hot tub. Evie is getting so good at caring for Ainsley without us even asking. I'd been weeding and pruning so I came and worked next to the hot tub so it was safe(r) (She's wearing her cap on the trach, but we still have to be careful that she doesn't get her neck in the water.). Ainsley had such a blast! Then I put her to bed early. She needed it!

Ainsley's had a bit of a fever off and on, so her energy level Sunday was low and she enjoyed a little relaxation on the lounge while we worked some more. Honestly I think she's fighting an ear infection, but I wouldn't want to put her on anti-biotics too quickly because of her stomach. Then we had sandwiches, chips and blueberry icetea on the patio.

Ainsley got bumped on her lip last week and then it turned into a nasty canker sore. She is HUGELY unhappy about it and keeps pointing at her lip. She never eats well while she is sick but with the canker sore too we haven't been able to work on oral feeding at all since she passed her swallow study. In fact this is what she did with her lunch. She did lick the orange and ate a couple chips but a meal that does not make.

 

Sunday afternoon we broke out the Slip and Slide. Remember those?! Now they have a bumper at the end. The kids had a great time and despite still not feeling well Ainsley joined them in the water. It was hot. Did I mention that? Really hot. We finally got some real summer weather (like upper 80's). So I think it helped her beat the heat, getting a bit wet.

The kids filled water balloons using the syringes from Ainsley's Mic-Key button kits. I never knew what to do with those until now. It reduces the water wastage that filling water balloons usually cause. And since I'm not worried about the water running I think we'll do more water balloons. It kept the big kids busy for hours. After they filled them they had a battle in the yard, running all over the place.

 Mostly Ainsley sat in the puddle of water at the end of the Slip-N-Slide.

 

I had some things I really had to take care of in the yard despite being sick and it being the hottest day yet of the year. We started a vegetable garden in some pots this year. I decided with this much yard work I needed to have some edible plants to make it all worthwhile. Hopefully I don't regret it.  The peas were becoming a tangled mess and needed to be tied up. They didn't care that I would fry in the sun doing it.  I'm hoping using the string on the tomato cage gives them the support they need because I love fresh peas and this should be an easy way to harvest them if it works.

We have a trip coming up and Steve needed to run some drip tubing to the pots from the sprinkler system so they don't die while we're gone. I also had some plants I bought more than a week ago that needed to get planted in pots or in the ground before they died from the heat. It could no longer be put off.

 

Ainsley looked so cute Sunday that I really wanted to get some pictures of her. Not a good idea since she wasn't feeling well. But if you wait for the perfect opportunity life can pass you by before it comes. She's been having so much fun in this little house I was glad to get some pics of her in it. It's been a good little sun shelter too when it's hot on the patio. Even sick, hot, feverish, bug-bit with a swollen lip she is such a cutie!

 

 

She was irritated with me and turned her back in defiance.

See what I mean about how open her eyes are now sometimes? It's pretty great.

I still love this caterpillar crawly tube. She's nearly too big for it now.

It was a great family weekend! The weather was beautiful and the kids had a blast playing in the sun and water. They were so glad their dad was home! It was nice to have no plans and just be together. I wish we hadn't been sick, but we still enjoyed it and got a lot of much needed yard work done since we are having a barbecue on the 4th of July. Hopefully by next year we will have found a reasonably priced gardener to help us. Until then I'm trying to pretend that I like weeding. There is still a LOT that needs to be done but it's better and that's all I can expect at this point. I just really wish weeds weren't one of those things that get bigger and multiply when you ignore them.  Remember the long days of summer when you were a kid that seemed to last forever? Well as grown-ups they aren't quite the same are they. Oh to be bored with "nothing to do". Can you imagine? But I love to see the kids having that experience of hot summer days that seem to last forever. Tomorrow when I get to go grocery shopping I'm stocking up on popsicles!