Aug 29, 2012

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.

Aug 27, 2012

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
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
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
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
 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
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
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
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.

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.

Aug 20, 2012

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

08/15 Sister Play
I LOVE this photo. Fancy hairdo's, dolls and listening to music. It's a perfect sister moment.

08/16 Cooking Outside
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
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
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
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. 

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.

Aug 15, 2012

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.

Aug 13, 2012

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
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
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
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
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
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
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
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.


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.

Aug 9, 2012

Camp Party Pics

Here are those Camp Party pictures that I promised. (Sorry I don't have time to neatly arrange these like I usually do so they will just have to be large. It should be so much easier than it is. Thanks a lot Blogger.)

The party went down like this:
First the campers arrived and we outfitted them with their camp T-shirts and let them play while we waited for all the guests to arrive.We headed to the Craft Shack to make our Glow in the Dark bug jars and decorate the archery target. The kids filled up their camp canteens at the Hydration Station and snacked on Build-Your-Own-Trail-Mix. They took their Field Guides and searched for "wild animals". The first 3 to find all ten (hidden quite well throughout the backyard) won a gold medal. We had a sack race competion and gave out more medals. We had a tug-o-war.  They swam in the pool and went in the hot tub. The kids got "I Rock" swim bracelets and compasses. They shot archery. We had dinner: hot dogs, corn-on-the-cob, tents filled with chips, and bug pasta. The kids applied bug tattoos. We went inside and sang Happy Birthday and had "Dirt Cupcakes". Then we lit the campfire and made Smores.  The kids slept outside in tents. A little secret: I broke the rules and let Ainsley sleep in the tent. She was SO SO happy. Hey, it was a once in a lifetime opportunity and I didn't want her to miss out on. In the morning the kids played Cabela's Camp Adventures on Wii. They made gliders and threw them in the backyard.We made blueberry pancakes with whipcream for breakfast. Then the kids played Capture the Flag. Adrian was so worried there wouldn't be enough kids to play but it worked out and his team won. He was so happy! I really am so glad he had a fantastic party of his own. Even though he was at Evie's Harry Potter Party, and Camp Halfblood Party (which I think I never posted pictures of, I was going to make another blog but didn't. Someday.) it's not the same knowing it wasn't your birthday. So we made it a super big deal and now they are even. The kids are expecting that this is the last one....the grand finale of my party days. But never say never right?