May 15, 2013

Mother's Day Weekend

Wow this post is going to be really heavy on images and video. I hope you like it.

Steve was home for the entire weekend which meant he was able to get out in the yard to mow and weed. With a few more of these kind of weekends it'll be in good shape. My throat was a little scratchy so I stayed inside. In between loads of laundry I setup Ainsley's Calico Critter house so she can play with it again. There were pieces she got at Christmas that needed assembly and other pieces that needed repair. Some pieces to the refrigerator (the shelf and drawer) had been missing for years and I was so excited when I found them mixed in with the Playmobil. With so many thousands of little pieces I guess it's bound to happen.

Here's the finished job. She really does play with this stuff a bunch. It won't look like this for long. I even glued the pictures on the walls.
Later in the day we got Ainsley out on her bike again.  She's so funny she's quick to notice things out of place and she was not happy that we taped up her feet or that she didn't have a helmet (because Evie was riding her bike too and needed it). I tried to fool her with a cowboy hat but she didn't buy it. Don't worry, I will get her one this week.

The $100 special expanding pedals with straps are on order and will be here any day. With any luck it will make it much easier for her to pedal.

I loved seeing all three kids out riding their bikes. SO AWESOME! We are so lucky to have a space to do that!

 I think she's even going to figure out how to use the brakes.
That night she surprised us by eating an entire plate of food: meatloaf, mashed potatoes and green beans. This is the first meal of regular food that she's eaten orally. We did follow it with a bolus of milk because it's not safe for her to drink large quantities of thin liquids.

Look, all gone! (Except the water she'd poured on her plate. Tsk tsk!)
I think it was a little pre-Mother's Day gift. Her way of telling me that all my hard work on oral feeding is worthwhile.
Here you can even watch:

Later in the night I did another sleep test. This time she lasted longer (we'd switched her to a 3.0 trach earlier) but here is a video of how she looked at 3 hours. Better than Pre-Botox but still not great. Since she clearly isn't doing great but also isn't doing as badly I made arrangements for a sleep study so we have data and not just observation. They rushed us into a June spot that they had on reserve. They are currently booked out until August at which point the Botox would be worn off. So that makes me happy. We'll be working on CPAP at home until then to prepare. We'll also be doing a videofluoroscopic swallow study in June.  I don't think she'll be getting her trach out anytime soon.

As I said in another post, I really am at peace about that but it doesn't mean I won't advocate for her. It's my job and I will do so until I think there is no longer any point. But, it is nice that it doesn't break my heart anymore. There was a time when I would have been SO disappointed. 
Sunday, Mother's Day, was really nice. Steve and the kids made me breakfast and I stayed in my pajamas. I didn't even feel like brushing the kids hair so I didn't until we got ready to go out in the afternoon (as you can clearly see).

Look what Ainsley made for me at school. Isn't the ladybug rock SO cute?! I'm sure she a lot of help. Adrian made me a ceramic owl and Evie made me a headband. I'm such a lucky mommy to have 3 fabulous kids.

I bought my two moms monogrammed Land's End bags and flowers for their gardens. These bags are awesome, are very rugged and will last a lifetime.
Both my moms (birth and adopted) have beautiful yards. One is more cottage style full of cute statuary. We stopped there first for a visit.

The other grandma's yard is large and manicured. Evie snagged my camera and took lots of pictures of both yards. She is quite the budding photographer.

The "koi" pond.

Ainsley had such a blast crawling around after the dogs, Izzi and Gracie, all night.


When she wasn't chasing them she was watching them. 
Then Evie caught more moments on camera.  

I actually thought this one was cool though I'm sure it wasn't her intention to get the hand.

Grandma giving Ainsley lots of love. There is no shortage of love for this girl among our family.
Finally I get my photo of one of my kids holding my hand.
A big thanks to my sister Erica for cooking. It was really nice to have a night off. We had the infamous flank steak that broke my 6+ year vegetarian streak many years ago.
We finished off the night with some "Margaritaville" in the garage. I'm always terrified that Adrian will hit one of the cars. He loves this part of our visits best. We had such a fun time but it was a school night. 

This photo is for Jen. If I was still doing my Happiness Project my photo for the day would be this. 5/12 Having An Occasion to Wear My New Espadrilles.
They've been in a box in my closet since July.
It was a great weekend. But now it's over and it's LAUNDRY WEEK. Bahhh! (When you put it off it really piles up!) I hope you had a nice weekend too and that the week brings you good things. We are expected some good things to come our way: E&A bought Carrie Underwood and Kelly Clarkson CD's with their Christmas Amazon gift cards (Thanks!). Steve's birthday is Saturday and his gift showed up. There is a secret. Shhh. I got Ainsley's special straws for her tube feedings and I think those pedals are going to show up.  Ainsley fell while standing (and also set a new record of 25 seconds) and cut her lip real badly so this week is also about HEALING. Poor baby.

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