Mar 28, 2011

Wow! A Nap CAPPED!

OMG! I had to share. Even though we are hectically packing like crazy people for the big move this news is just too big to wait! For the past year or two every few weeks or months I try to keep the cap on when Ainsley naps. Every time after about a half hour or so she wakes up. Obstructive Sleep Apnea is the term for when you obstruct, cutting off or reducing airflow, during sleep. In other words she NEEDS her trach to sleep(that is, until today). This nap was about an hour and a half long and she sleep soundly. I often take video as a means for evaluating progress. You'll see in the video that her breathing is a little loud, but it's not bad, and the more important thing is that her oxygen sats stayed up and she stayed asleep.  Interestingly today I went into an in-depth explanation of why I wanted her to wear the cap while she slept and told her I'd be listening on the baby monitor and would come take it off if she was having a hard time. I don't really think that is the reason for the difference but a part of me can't help wonder at the coincidence. Of course one little nap doesn't equal a decannulation plan, but it does hint at the possibility down the road.

Mar 9, 2011

Woo Hoo We're Officially Moving

I am happy to be able to say we are now OFFICIALLY moving. Yes we found the house in October, yes we got our house ready to sell by January, yes we got an offer in February but NOW we have agreed on the inspection items and have SIGNED paperwork. This means baring a catastrophe of some unexpected variety we will be moving....and soon. We are set to close at the end of March and move the first weekend in April.

I've been a very bad blogger lately, mostly I was too cheap to pay the $5 for extra photo storage so I can post pictures. Because after all what's a blog post without pictures?! So I finally decided to pay, and this time it didn't tell me I'm out of storage memory. Go figure. I'm going to need that $5 with the higher mortgage. Kidding....I hope.

We are REALLY excited. I found this rambler in October just by chance when I wasn't really looking. We were not anywhere near ready to sell our house so I think it's somewhat of a miracle that it all came together in the end because I think this house is pretty much perfect for us because of Ainsley.
  • I LOVE that it is safe and accessible for Ainsley. Although she's gotten quite good at scooting up and down the stairs, now up to 5 times a day, I'll still feel better without the worry of her falling or me carrying her and falling and breaking one of our necks. 
  • I'm super excited that the special ed bus can probably drive right onto our driveway.
  • I also love that the driveway can be used for Ainsley's walker and the kids can ride bikes. Maybe we can even get Ainsley on a tricycle. Can you tell I LOVE the driveway?!
  • And it has it's very own 3 car garage. No more sharing a driveway and garage with my next door neighbor worrying that they will come home when I have the car pulled down in front of the door to load her in.  
  • I love that the kids will have a large yard to run and play in with a swing set.
  • I love that Steve will massively shorten his commute (it under 10 minutes to his work) and avoid the 520 bridge tolls that are coming this spring. 
  • We're moving into the best school district around.
  • I love that Ainsley will have a room of her own that connects but is separate from ours so we can care for her trach at night without her having to be in our room.
  • I LOVE LOVE LOVE that I'm going to have space for our stuff and won't have to have medical supplies in my coat closet in my son's bedroom.

Look at the back yard! Pinch me. I can't believe I'm going to be living here in 3 weeks and 3 days.


Here's some of what Ainsley's been up to.

Standing at the sink all day because it is a place where she can pull up to a stand and hold firmly on, and it's the perfect height and very stable. 

On tip-toe workin those calves.

Seriously. All day. She loves it. But it was very gross today when I found her dipping a toy in a dirty pan and putting it in her mouth. Not the day this photo was taken, obviously. She likes to play with whatever is in the sink, and put things that don't belong, in the sink. It's great PT but I hope her fascination with the sink doesn't last too long.

Dang she's getting strong. She lifted this HEAVY diaper bag up by herself and pulled EVERYTHING out of it, including her emergency medical kit. Have I mentioned she's GETTING INTO MISCHIEF - A LOT?!

She's learned to turn the lights on and off and open doors and slam them shut, over and over, just because SHE CAN.

She TWICE ate almost an entire cup of yogurt. And topped her personal best record with 36 bites of pureed formula.

Today our medical supply company came and picked up the oxygen tanks we've had since Ainsley was born. We haven't used it in years and I'm feeling safe enough about her airway to not have it around and luckily the doctor agreed, no questions asked. That is HUGE! I am THRILLED to get this flammable stuff out of my house, car and life.  I am ready for change and that's a good thing because here comes PLENTY of it.