Back to School

It's been a crazy week. It's Friday and things have settled down some. Though I already spent an hour and a half writing an e-mail to Ainsley's doctors and scanning the Cincinnati report for them this morning. I have bills that should be paid and school paperwork that I need to review but I decided not to. Instead I sat on the patio and called a friend who perhaps needed an ear, and then write a blog post.

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.

I'm not sure but I think J is the same age, just smaller because she has Down Syndrome. Ainsley is tall so she towers over her. They are SO cute together! I love that Ainsley has a real friend.

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.

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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.

At the same time Adrian was getting ready. Luckily Adrian needs little help. He does what he needs to and I am so grateful to have one child like that who doesn't need too much help.

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.

Happiness Week 35

Oh my gosh I nearly forgot it was Monday. Happy Labor Day! I hope you aren't laboring. We had a pretty decent last week of summer (despite oral feeding challenges, a topic for another day) and I hope you did too! Like many places around the country my kids go back to school this week. If you are doing the same thing I wish you great luck. I know I'm going to need some luck and some big pots of coffee. Have a good week and thanks for reading! Here are this week's photos.

Daily Happiness Photos - Week 35

08/27 Being the Dragonfly Catcher

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For some reason this summer we have had a lot of dragonflies(and a couple birds) fly through the door and into our house.  Honestly I will catch and release any creature including spiders. It is especially fun to set a dragonfly free. Adrian's a bit like me in the way he feels a sense of kinship with all creatures and so I love when he comes running to me to rescue a critter and I get to be a hero in his eyes when I set it free.

08/28 Fun At the Zoo

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I LOVE animals. And I LOVE the zoo. Sure, sometimes I feel bad for the animals but teaching humans to value and appreciate all life, well that's a life with purpose and it's a safe life so maybe it's not so bad. Ainsley was afraid, but I forced placed her in the turtle shell anyway. Then she realized it was fun and had a blast. She even played in the wood chips even though they "feel funny" (quite a step for a girl who's had some sensory issues in the past).

08/29 The Tooth Fairy

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Out of sheer laziness we had 3 teeth for the tooth fairy. Based on past experience I really didn't think Ainsley understood. But now she does that's for sure and I'm pretty sure when her other front tooth comes out she's going to insist on it going under the pillow right away.

08/30 Art for 1st Period

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I am a night owl, as is my birth mother, and my daughter. We are not morning people. It's in the blood. So I've been scared, really scared about the transition to middle school. We got the transportation assignment mid-week. The bus picks Evie up at 6:50. It's not funny, don't laugh. But the Gods were smiling upon us when Evie got assigned World Art for 1st period. It might make all the difference in easing the transition. It's a much better way to wake up....than say Math.

08/31 Saying Yes to Sculpey

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Sculpey was on our list for the summer but I kept saying no when asked to do it because I hate cleaning up the mess. It's oily and sticks to the table. So imagine your worst Playdoh nightmare times 10. I'm fussy about my house (yes I know, probably shouldn't have had kids but it's too late for that advice) so the threat of permanent damage to my carpet sets me a bit on edge you might say. The kids created the most amazing creations. To keep Ainsley out of the Sculpey I brought out the Playdoh too. Man-o-man was that the biggest mess!

09/01 Tubes

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Even more fun that bringing out the tubes and seeing the look of excitement on the kids' faces was being able to say to Steve "Seeee, I TOLD you!" Over the years he kept telling me I was crazy for saving these tubes (from rugs) and wanted to toss them but I knew from my days as a working parent at the co-op preschool how much kids LOVE pushing cars down tubes. It feels good to finally use them.

09/02 Family Fun

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 Not everyone likes their spouse's family but I do. I'm really lucky, Steve's family is great and really easy to be around. Steve and his dad are close and it's always touching to see them together especially like this, having fun playing badminton against the girls. We invited Steve's family over for Labor Day weekend and the cousins stayed the night as the last final hurrah of summer. They had so much fun.

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To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

Ainsley's New Smile

Ainsley's new semi-toothless smile.

Her front teeth have been loose for 1 1/2 years. I remember thinking she was just 4 and too young to lose her front teeth. I can't believe they held on this long. They starting sticking straight out 6 months ago and I thought FOR SURE then they were on the verge. But they hung on. Tonight I finally pulled the loosest one. Underneath there is the tiniest bit of white from her adult tooth (her gums have looked sore for weeks) so I'm hoping it will erupt soon.

It was funny, Evie didn't want me to pull it, so I think Ainsley thought that was funny so when it didn't come out after the first few tries she pointed and said she wanted it out. I think just because her sister didn't want it to. They have a funny relationship. Some day I hope Ainsley can talk so I know what she really thinks. She seemed happy. So now we have 3 teeth for the tooth fairy. And two more that are loose. She might have a lot of loot soon so we'll have to take her to buy something special since she doesn't really understand the concept of money.

Happiness Week 34

Today my post is a bit late because I spent some time talking on the phone with my good friend Lisa. It was time well spent(for many reasons) but ate up the time in the earlier part of the day that would have been for blogging. I wish she didn't live so far away (in Canada) but it seems to be that way, my trach mom friends are scattered across the world. Even so we provide support to one another that is so valuable. Anyway, she gave me the secret to how she finds her wonderfully inspiring quotes that she puts on her Facebook Photography page.  It helped me locate this quote that I want to share because it is so fitting to my happiness project which has been challenging this summer.

“People are just as happy as they make up their minds to be.”  ― Abraham Lincoln

I often wonder what makes people unhappy. The answer seems obvious but it really isn't. People are capable of finding happiness in the most adverse situations. I'm sure they do not like their situation but their minds still allow themselves to experience happiness in spite of their situations. On the flip side we see people we think "should" be happy who aren't. I think it boils down to the above quote. We are as happy as we decide to be. I think where people get into trouble is when they think that their situation is "unfair" or it "shouldn't be this way".  It's almost as if when we fixate on the unfairness it's a form of self-protection to keep us from having to acknowledge that it's true, whatever the "it" is that isn't fair. "It" could be anything big or small. Someone cut in line at the grocery store or that someone we love died before their time. Or maybe the anger we feel gives us the fuel we need to seek change. The problem comes in when there is no action that can remedy the situation or the cost is too high.

Most of the time I can move past the "it shouldn't be this way and it isn't fair" feelings that come with having a child whose needs are so demanding and still find happiness. That's not to say that my life is an unending stream of happy emotions. That type of happiness is a myth. But years ago I came to recognize that my life as I knew it "pre-Ainsley" was over. It required a period of mourning and adjustment and eventually I was able to acknowledge that even though it was unfair, it was the way it was. Life got easier after that and I could then see that I still had much to be thankful for and happy about. But there are times that the "unfairs" creep back into my head.

I hinted at this in my post last week, but I've been making a big push to increase Ainsley's ability to eat orally. It takes a LOT of time. Time that I'd rather be spending a hundred other ways. Most people believe that eating comes naturally and that in the case of tube fed kids if you stop tube feedings hunger will take over and the child will eat, simple as that. Unfortunately the reality isn't nearly that simple. Eating is a skill like walking or talking that most of us find easy and take for granted. The truth is that for many kids like Ainsley it is hard work. In the same way that I can't expect Ainsley to "just walk" because she wants to, she is not going to "just eat" because she should be hungry. It takes work and practice, and that requires a lot of effort on both our parts. That impacts the whole family.

The good news is that even though it's been incredibly tough we've experienced some progress this past week and a half.  I would like to write an entire post about feeding. Next week is the final week of summer break and I'm still trying to squeeze in some happiness too. Tomorrow we're taking a trip to the zoo and we have a lot of items left to do from our Summer Staycation Basket so that post might just have to wait.

I always love fall and the fresh start of a new school year. I sense that it will be easier to get back on track in a lot of ways. It's not been the summer of my dreams. Yes life could be worse but it could also be better. My goal is always to work toward living a life I will be satisfied with when my time on earth is done. I wish you all a fabulous week, whatever it has in store for you.
 

Daily Happiness Photos - Week 34

08/20 Mexican Casserole

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I love it when I have all the ingredients for this dish because the kids like it and it's made with leftovers and requires no "cooking". Mexican rice, corn, black beans, shredded chicken layered with cheddar cheese and baked in the oven.

08/21 Family Band Time

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After I made a stink Steve arranged his work schedule so he could work late(r) other nights and come home for dinner once during the week. After dinner we played a game and the kids made up songs with their dad accompanying them on guitar. Even Ainsley had a blast "singing" along.

 

08/22 Grown Up Sleepovers

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My dear friend Melanie came and stayed the night. Her kids were out of town so she came over on her own and stayed the night (she didn't have to worry about drinking and driving). We had dinner and drank wine on the patio and had grown up talk when I sent the kids to watch a movie. It was fabulous except we made strawberry shortcake and forgot she's now eating gluten free. Sorry Mel! The best part was the strawberries and whip cream anyway.

08/23 Menchie's

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 I had never heard of Menchie's but I have a feeling I'm going to be hearing that name a lot from now on.  It's not a cheap indulgence at $15 for 3 servings but it sure was a fun special treat for summer. We found it by accident when I went to pick up my glasses so it was nice to add some happiness to a day full of errands. (I also got to try on some fabulous vintage 1950's French frames from the doctor's collection. Lucky me.) They let you have taste testers before you buy. I think we tried every flavor and then the kids put a little of each in their cup. It was delicious!

08/24 Apple Strawberry Crushers

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You would think applesauce would be a food any kid would love but I've never been able to get Ainsley to eat much of it(It's a texture thing.). Until now that is. Now that I found the new flavor of Trader Joe's Crushers - Strawberry Apple. She'll actually eat the whole package of this stuff. I'm considering buying a lifetime supply just in case they stop selling it (TJ's is famous for discontinuing products.).

08/25 Mashed Potatoes

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Another food you would expect any kid to love: mashed potatoes, especially buttery ones but Ainsley doesn't. But after working on textures this week I was finally able to get her to eat a couple ounces of mashed potatoes at a sitting. She didn't like it but she ate it with minimal gagging. Some day I hope she'll learn to like them. After many years of trying this is a big deal.

08/26 Breakfast

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We love to have a big breakfast of eggs and the whole works on the weekends. We don't always do it but Steve promised the kids this weekend. He cooked, and even made pancakes too. Instead of the usual sausage we had bacon and it was a big hit with Ainsley. She chewed it into bits. I have a feeling when she does start eating table food she's going to love breakfast too. I know she's not going to miss eating the mush.

 

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To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

Happiness Week 33

I'd forgotten that when you are a stay-at-home mom with 3 kids your days are largely consumed by mealtimes. Breakfast is easier now that the big kids can get it themselves. But many days it seems that I've just finished cleaning up breakfast and it's already time for lunch. I can get one thing done in between and then it's time to think about dinner. Steve is almost never home so I am cooking dinners too. All this is compounded by having a tube fed child because once meal time is over (Ainsley likes to sit at the table and try to eat) I then have to administer a tube feeding and clean that up. We are working extra hard on oral eating right now. It's hard work and takes even more time but I believe that Ainsley can do it and in the long run it will save us a lot of time.  Ask anyone who's had a tube fed child and transitioning to oral feeding is like your worst picky kid eater you can imagine times ten!  

Sometimes it's really tough to find the happiness when my days are so consumed by Ainsley's care. It's not her fault that she is the way she is but even so it can be difficult not to be resentful at times. It is heartbreaking to feel that way about your child, when at the same time you love them so much that you would trade your life for theirs. It's a crazy mix of feelings. Sometimes you want to give up. You just want an ordinary life doing ordinary things with ordinary problems. But after a good night's sleep I'm usually ready to start fighting again.

Daily Happiness Photos - Week 33

08/13 Ainsley's Smile

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We are so lucky that Ainsley is so happy. Her smile is contagious. It's been a little wonky because her front teeth have been loose for a very long time. I took this picture to remember her "baby smile" because very soon she is going to be toothless, I suspect for quite awhile.

08/14 Ainsley Stands Without Support

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Even though it was for less than 5 seconds it felt amazing to see her do this!

08/15 Sister Play

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I LOVE this photo. Fancy hairdo's, dolls and listening to music. It's a perfect sister moment.

08/16 Cooking Outside

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The weather is finally hot enough to warrant cooking outside. I was excited to try it, but quickly realized that it's was overrated and not too convenient when your hot pads, colander, plates and silverware etc are in the house. If I was rich I think I'd hire a personal chef (along with a gardener). Still I was glad that I finally cooked a whole meal outside. It was fun.

08/17 Sampler Plate

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Ugh. My kids are always hungry.  My pantry was full of left over stuff that was in danger of going bad. An idea was born: the sampler plate. I decided to pull out all the bits that needed to be eaten and put it on a plate on the counter top. (There was more, this is what was left when I went to take the photo.) It was a great way to clean out the pantry. Before the day was over it was all gone. I've got to remember this trick. And yes that is a gummy fried egg and chicken feet.

08/18 A Playhouse For the Kids

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I've always dreamed of the kids having a playhouse and finally they do. It's not completely finished, but finished enough that we could move the furniture in. This was all furniture we already had. The chairs, the rug, the table and everything. This wardrobe used to be our coat closet at the old house. We're going to try using it in here for dress up clothes. I can't wait to see what creative play happens in this space.

08/19 Oball in the Garage

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After moving some things out of the garage into the playhouse we listed some items for sale and free on Craigslist (if you've never tried it, do.) You can get rid of anything if it's free. I had 8 people email me for a crummy old aluminum ladder and it was gone within hours. By the end of the day we'd made a lot of space and it will be much easier to get in and out of the car now. Steve hung up our Oball. It's tied to a string nailed into the rafter so the kids can bat at it. Ainsley hadn't used it since we were at the old house and she's pretty good at hitting it now. It's excellent PT. And the bonus is that it is positioned to help me know how far to pull the car into the garage. 

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To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

Ainsley Stands! Loses a Tooth and More!

Yep. You read that right! I've been reading Kids Beyond Limits and made a few subtle changes in the way I interact with Ainsley. It's a subtle change that seems to have had amazing results. Right away she is trying to do more things by herself.

Like in the morning when I found her doing this:

Believe it or not she has never tried to get out of the crib before. Still, I've been asking Steve to take the rail off for months. But we're busy with twice as much to do as we have time. We need to think about bed options. But I digress...

Back to standing. In the late afternoon I took her into the family room to do some home PT and stood her up to do a little balance work. What she really wanted was to watch a show on Netflix. I knew that but we don't always get to do what we want in life. She was really wanting to get her point across but I was pretending that I didn't notice. She picked both her hands up off my shoulders and stood long enough to sign "DVD".  I couldn't believe it, and when she stopped I shrieked. Adrian came running and she did it again for him. It was SO exciting! Evie came to see but then the phone rang. It was Ainsley's pediatrician calling about something important so I had to take it. We tried to get her to repeat the fete for Evie and she did but only for a second and I caught a picture. I tried to get it on video so Steve could see later.

What a momentous occasion!

Then a bit later she did this just to show off.

I wish I could have a regular coffee table but I have a plastic "therapy table" instead. We've now graduated to doing the BBB(Beanie Baby Basketball) standing. She's actually getting quite good at throwing and got 13 of them in the bucket. Usually she kneels but we were trying something different. Standing between the table and sofa will be an ideal place for Ainsley to practice balancing on her feet but she doesn't yet have enough balance to throw without stabilizing. Adrian is such a good helper. Evie too.

She also tried to transfer to the toilet and get on and off by herself and get in and out of the bathtub by herself, and it's only been a week of this new approach.

Earlier in the day I took some pictures of Ainsley because she's due to lose her front teeth. They've been loose for 1 1/2 years. After the "photo shoot" I pulled the loosest. So these will be the last photos of her famous smile. Though it's getting a little wonky as the teeth have moved out of place, being so loose. She still can't smile and open her eyes at the same time so these are as good as it gets. I'm hoping she'll have nice adult teeth.

I'm not a huge fan of these dreamy style photos with the sun effect, but this one is real, not PhotoShopped and cute none the less.

Little rascal!

Trying to hide behind her dress.

She's so stinkin' cute when she's "mad".

I think this one is my favorite even though she is on hands and knees.

The front two teeth will probably be coming out any day.

I hope that we'll see more standing over the next few weeks. Our secret goal was to have her standing (and maybe even walking) by the start of school.   Today at speech therapy she stood for the speech therapist and signed DVD just like yesterday. It felt like about 5 seconds but maybe it was only 3. I am hopeful.

Though I've written briefly about it in my happiness posts I also wanted to give an official T&A (Tonsillectomy & Adenoidectomy) update. Ainsley was able to stop pain meds the second week post-surgery however the drool continued which meant she wasn't swallowing. There were puddles of drool all over the floors (I did a thorough mopping Monday night).  On day 15 it got much better very quickly. I guess it was no longer painful and she forgot it used to hurt to swallow. Over the third week she gradually resuming some "eating" (i.e. tastes). She's been able to wear her cap to go in the pool (with a life jacket and floaty ring) this week. With a trach it's the cap or no pool, I've left the choice up to her. I've felt bad ever since Dr. Cotton and Dr. Wood said her airway is so bad "she shouldn't be able to cap" and since they upsized her trach (i.e. we went up a size to a 4.0) I just didn't even want to try.

Now that the pain from the T&A is over and she's worn the cap successfully in the pool we may think about trying it at other times during the day, as tolerated. Her surgeon said the tonsils were larger than he expected, so you never know how much this might help her airway. My hope has been that it would alleviate some crowding which might eventually reduce her upper airway swelling. The difference so far isn't huge, but I think we have to give it more time before we know for sure.

Tomorrow we meet with the eyelid surgeon to discuss the results of the Frontalis Sling. We will ask him to lift the lids a bit more. It's a minimal procedure. We'll see what he says.

Ainsley starts Kindergarten next year, and due to the fact that she'll be in a special classroom she is accepted for "full days". They haven't given me the information yet, but the schools are notorious for that. We don't usually get the bus schedule until the last week and even then it's subject to change after the start of the school year. I will have 3 kids in 3 schools next year. I'm hoping for a smooth adjustment. For now we are trying to enjoy the final weeks of summer.

Happiness Week 32

The days go by so fast. So fast. Life is what happens while you're busy making other plans.

Daily Happiness Photos - Week 32

08/06 No Drool

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True to what they said it took a full two weeks for Ainsley to recover from her tonsillectomy (and adenoidectomy though that was less a problem). I was so sick of soaking wet shirts and puddles of drool all over the floors (a child who drools and crawls can't help but leave a trail). Today when I got Ainsley up I could see we were near the end. She was DRY. Hallelujah!

08/07 A Trip to the Library

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I really love the public library. It's such an amazing resource to have, borrowing books, music and movies free of charge! How lucky we are in life to have such a thing! I reserve items through the internet all the time and then swing down to pick them up when they arrive. My kids LOVE to browse the books, but usually we are in a hurry. Today while I had a nurse I let them browse and took the opportunity to browse myself, in the home decorating section, and came home with about 6 great books for inspiration. This year the kids had completed their summer reading charts earlier and the library wasn't out of prizes. Yay! Bonus! Light up glasses, they were thrilled!  

08/08 Speech Therapy

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Ainsley missed two weeks of speech therapy, just when we were getting started. Honestly the first two sessions we didn't get much actual therapy done, mostly just went over the medical history. This therapist seems to know what she's doing and I am very encouraged that with her guidance we will get Ainsley eating and maybe even talking.

08/09 A Day At the Farm

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I packed the kids and the nurse along with a picnic lunch and we went to see the animals at the farm.

08/10 Lunch on the Patio

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I taught the kids how to make Cesar salad (with chicken) and we ate on the patio. It was a nice little break since for me it was laundry and cleaning day.

08/11 The First Coat of Paint

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We decided to use the same yellow from Evie's old room (which she misses) for the play house. Steve's work required that he work Saturday even though he'd already worked 60 hours that week. When he got home I went and picked up the paint. Later, he was able to get a coat up before we went to bed.

08/12 Craft Bins

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I found this tower of bins on the side of the road a month or so ago. I washed it (in the shower) and now it's my new craft bin. My tote was a mess. Hopefully this will make it easier for the kids to do some art projects. And I can find my back-to-school supplies. I cleaned off the desks. We're getting ready for going back to school.

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To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.