May 21, 2013

Interesting Sleep Development

Ainsley fell asleep on my shoulder last night while we watched TV. The position was slightly more upright and sideways with her legs over mine, her butt turned and her head on my shoulder which put her in a somewhat more forward position. She did GREAT! I was so surprised!

About 2 hours in her head fell back (think standard sitting position in a reclining sofa) and she started obstructing like she normally does. I repositioned her and she fell and stayed asleep. It was a good excuse to stay up late watching TV (Netflix episodes of Parenthood), but after 3 hours we had to get to bed. I could be wrong, but I almost think she could have made it through the entire night in that position. Unfortunately the position isn't easy to maintain.

That definitely tells me that the obstruction in the soft palate is significant and maybe it's also the her tongue falling back into her airway. It makes me want to try some other positions. Usually she sleeps on her side which you would think would be pretty good. I haven't had her sleep on her stomach in years because of the trach and she's now using a pillow but I guess with the trach capped it doesn't matter if it's obstructed by the pillow.

The docs also want us to work on having her sleep with CPAP (while capped) at home to prepare for the sleep study she'll be having in June. So I've got some experimenting to do.

May 17, 2013

Happy Friday!

Friday is always a happy day.
Even when your son's school calls because he has a stomach bug, and then he vomits on the sidewalk.
Even if that means you don't get to go out and celebrate your husband's birthday with a nice dinner at Jak's Bar and Grill.
If it happens to also be this!
Steve's last day of work in the video game industry.
That was the little secret I was alluding to. We weren't sure if it was going to happen. There was some chance the job would require a fair amount of travel to California but it looks like that's been worked out so it will be minimal.
He is a little sad because he really liked some of the people he worked with, and they like him. But in that industry there is no such thing as work/life balance.  Employees are expected to do whatever it takes to meet the never ending deadlines. That means many nights and weekends away from his family. Having 3 kids would be enough of a reason to need him to be around more but having a child who is medically complex and has many special needs makes it harder. We really need him home more. The children are nearly grown and enough is enough. 
I am so thankful that some ex-coworkers tracked him down to offer him this position outside the industry. He will be doing UX design but for software and mobile devices. It's still in the tech industry but since it's not in gaming there is no need to "crunch" and other employees have told him they work 40 hours a week. Can you believe that?!
Now it's Steve's chance to prove he's not really a workaholic. And I am SO READY!
On top of that he will be paid more which is great. When Sony shut down the game studio he was working at last year he had to take a pay cut and this house was a stretch for us as it was.   
Even if we all come down with the stomach flu I think this is going to be the best weekend ever because it marks a FRESH START for our family.

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.

May 10, 2013

Botox Results

Wellllll, I'm not 100% sure what I think about the Botox. I'm going to give it some more time before I decide but did want to update you since it's been over 10 days since the injections. What we have noticed is that she is more vocal. Hopefully this is a growing trend. Is it because of the Botox? Hard to say.

Eating wise she is still doing okay, so it would seem we don't need to be concerned about aspiration caused by opening up the airway. However we can't be sure that the Botox actually opened up the airway in the way that we hoped. I'd really like to get a look to see, and I e-mailed her doc, but I doubt they'll want to do that.

As you know Ainsley's problem areas are:
  1. coughing (especially if she's sick)
  2. crying
  3. exertion
  4. sleeping
All are fine with the trach open and in use, and all are a problem when the trach is capped off. Sleeping is the biggest issue. She might be able to work through those first 3 with modification (like taking a rest when she gets too exerted or calming herself during crying).

Wednesday I tried letting her sleep with her cap on to see if the Botox had the desired result. Although it was somewhat better and she didn't wake like she normally would she was noisy and that's not a great sign. After an hour breathing like this she didn't wake up but I suspect she would have after another hour or two.

I took a little video so you (and the docs) can see.

Since she does have a 4.0 trach cannula down in her airway it might be worth downsizing her trach. I've e-mailed her doctors and am waiting to hear back about that. I might try again on a weekend (I have to stay awake) if we downsize.

For now we are just enjoying her. She is doing well and seems to be hitting lots of inchstones lately. In case you missed it, read this post to see what I'm talking about. She's going where she wants to go, doing what she wants, doing well at school, getting into mischief, eating food, and communicates well enough in her own special way to get what she wants (most of the time). So really she has a lot of reasons to be a happy girl. And she is. Trach or not. Truly I am at peace knowing that it could go either way for her.

Have a Happy Mother's Day, especially all my trach friend mommies. I was chatting with my mom and she said, I hope you enjoy Mother's Day and think having kids was "worth it". My response? "Of course it is!!!"  The mom job is not an easy one, especially with a medically intensive special needs kiddo, but I love it (even on the days I complain a bit) and my kids (all three) mean everything to me!

May 8, 2013

A Fantastic Weekend: Growing Independence & New Bike

I haven't yet decided what I think about the Botox so I'll save that for later this week. We had a great weekend. It was uncharacteristically warm for May in the Pacific Northwest. We love our sun when it makes an appearance, that's for sure. Steve finished up a game deadline Friday night and was home for the weekend which was really nice. Having a supportive husband at home makes such a difference

It started with a nice Friday Night Pizza/Movie Night. We rented Wreck It Ralph. I'm always so grateful when there is a new movie to watch since these days we have a really tough time agreeing. Sometimes it takes 45 minutes to come up with something we are all reasonably happy with. Evie is too old for most kids movies. Ainsley is still only interested in very simple kids' movies. Adrian doesn't like the more adult "family movies" and of course we (the parents) are really BORED of pretty much all of the kids' movies in our collection because we've watched them so many times. 

Then Saturday we had things to do around the house. Since Steve had been gone (mini-crunch) all the lawns needed to be mowed. And we had SO much pollen coating the patio that it looked like it was covered in sawdust. So he pressure washed. I took care of Ainsley and the kids (you know: breakfast, lunch, tube feedings and Ainsley's care) so he could just focus on the yard. Then I washed and vacuumed both cars (the kids' helped) because they really needed it. Those parts weren't so fun but it was great to get it out of the way. At least the weather was nice while we were doing it.

I brought out the pop-up playhouse, a quilt and tunnel to try to make it a little more fun for the kids.

Sunday when I was getting ready to put Ainsley in the car to go to Adrian's baseball game she went "missing". She'd actually gone outside through the back door and was hiding from me in the house. Look how clever she thinks she is. 

Saturday Ainsley's new "bike" arrived via FedEx so Steve assembled it. Ainsley watched with excitement the whole time. Finally around dusk, after completing our chores, we put her in it. The way the steering works it can make pretty tight circles so I think she'll need a seat belt. And she does need the special foot pedals so I'll be shopping for those. I'd hoped maybe some simple toe clips might work but based on the bungie ties we rigged up I think she needs more heal support.

 Still she did AWESOME!!! And the bike, a Mobo Triton, is really COOL even if it is good for kids with special needs. Evie and Adrian both wanted to take turns in it and thought it was a blast to ride (It adjusts easily which also means it will last Ainsley many years.). She really seemed to understand it and I think with practice she will have no problem getting around in it. I really like that it is low to the ground. I think she'll feel safer and with the seat being comfortable I think she'll be happy to sit in it until she is ready to resume pedaling.

My plan was to return it if it seemed like she really needed the special needs trike. Since we were $1,000 short I am really glad this worked out. Honestly even if we had the money I think this might be the better choice for her. So to all of you who gave Ainsley gifts of cash for her birthday, Christmas or Easter, know that your money went toward buying her this awesome bike.


Ainsley is getting stronger. She is now able to get around in her walker quite well. We bought this house 2 years ago for it's special layout. Even among single levels homes (which are a small minority) it is rare to find a yard that has no steps, stairs or large hills. The large driveway is a fantastic space for Ainsley to safely use her walker or new bike.

Check out the driveway covered in "pink snow" from the flowering cherry tree.  
I did a full day of yard work earlier in the week and wanted to show you the beautiful camellias that I picked up off the ground (I'm not sure why so many fall off).
Though I'd rather have been sitting on the lounge chair with an iced tea enjoying the sun instead of working in the yard I'm glad at least that I took a couple extra minutes to put these in a bowl.  We enjoyed them for days.

In addition to the nice driveway the house had a large Rainbow swing set that was accessible from a path on one side. Last year (it's been rainy and cold up until now) she wasn't able to push her walker through the wood chips very easily. And I worried about her tipping on the stone paths. But as I said she's grown stronger. Over the weekend she was able to use her walker to walk across the entire yard, access the swing set, climb the steps and slide down the slide BY HERSELF. It's so awesomely empowering for her to be able to do this!

I was still nervous so I sent Evie up to "catch her" if need be.
Then Ainsley decided to try to climb up the slide. She is learning persistence which she will need if she is ever going to walk independently.

Then yesterday after school she actually climbed up the slide BY HERSELF! And then she proceeded to do it 5 times. Daddy was at work so he missed it but she repeated it for him.

She's been cruising more and here you can see she is cruising her way around the climber, eventually making it up to the slide so she can go down.

This was my hope for this house. I knew that the amount of yard work would be a huge challenge for us but that it would be SO great for our special girl! Our old house in the city did nothing but limit her. April marked two years in the new house and I still think it was a good decision. This house is really perfect for her and we are so lucky we found it. I know the sellers put a lot of money into landscaping that they were unable to recover due to the housing market but I think they would be happy to see what great things it does for Miss Ainsley. I hope it brings them some good karma.