Got CPAP?

YES WE DO!

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Reaction?........

Interpretation : "What the hell are you doing to me? Do you REALLY think you can fool me into thinking that's an "elephant mask". Are you people crazy?

Yep. This should be FUN.

NOT.

But it's necessary. Ainsley can do well without the trach but without it we know she would have obstructive sleep apnea so we are trying CPAP (with her cap on) while she sleeps. If she can use CPAP successfully at home then we should be able to move forward to attempt decannulation when the time is right (likely after she has eyelid reconstruction surgery, sometime in the spring).

Key word: IF

She's going to need the CPAP or the trach. We'd prefer CPAP.

Today our DME brought the machine and we tried some different masks. I wore it and pretended to be an elephant. "Oh isn't this fun Ainsley?".  At first she let us try it on her. Then she cried. She wasn't fooled.

I didn't even attempt to turn the machine on while she wore it. But I tried it myself. It's not pleasant all that air rushing up your nose. We'll see how things go but I'm anticipating this is going to take some time and will be a difficult adjustment. I'll let you all know how it goes. She's had a harder time wearing her cap because she had a slight cold last week so we'll wait a few days before trying it out for real. For the next few days we'll be simply working on "mask desensitization".

Look Who's Talking

Well, okay, that's a catchy title but not exactly true. For quite awhile I've wanted to show off Ainsley doing some signs but I just couldn't get around to it. Since then she started speech therapy with Pam Marshalla (in July). She was fabulous! I love her! And Ainsley made a lot of progress during the weeks we saw her. She was using her voice far more. Unfortunately Pam is retired, but agreed to see us for a time. We stopped when the summer was coming to an end though we will consult with her every few months or as things change. I'm excited to share this new development with her, and you.

About 2 weeks ago Ainsley started moving her jaw/lips/tongue when she vocalizes. For awhile I questioned whether Ainsley would ever figure out this critical piece. She is almost 4 years old. Pam was the first person ever to say that Ainsley will talk. I really respect her opinion she has 30 years experience and is very well respected in her field. I appreciated her confidence. But....we needed to see this final piece fall into place to be sure. Or I guess I did. Pam probably knew from experience based on what she observed in Ainsley but I wasn't as sure. Now I can say I really think she will speak.  For a very long time I have heard Ainsley "say things" that sounded like a complete sentence but it was as if she was a really BAD ventriloquist. The lips were slightly open but not moving though her intonation pattern matched the words I suspected she was saying.  I'd read in Pam's book that caregivers frequently don't recognize their children's first words as words because they don't sound "right" (we're talking kids with serious speech issues). Things are way not going to sound right if you don't move your jaw/lips/tongue! So this makes sense and I was glad to know I wasn't crazy.

I'm so excited by this change!

In addition to treating Ainsley as if the words she says sound right, and encouraging her to "use her voice" throughout the day we have also done some massage. Pam said that Ainsley was too tight from low tone and trying to hold her body in position so we tried to loosen up her shoulders, neck and face muscles, focusing specifically on the jaw which was very stiff.  I'm not sure which piece was most helpful but I believe that this progress is directly related to working with Pam and this subtly different approach.

I've always been the kind of mom who was really unsure of her kid's milestones. Is one step walking, 3 steps, how far do they have to walk before it's really "walking" and not just step taking? Was that utterance a first word? Heck if I knew. Until a stranger could recognize the word in question as a real word, I was never sure it counted. Oddly both my older two kids first words were "Uh-oh". Maybe because I could be sure about that. It was easy to tell when an "Uh-oh." happened and was accompanied by the corresponding word. On the other hand "Mu." could be "Ma (mama), more, my, milk."  So I guess, looking back, I'd have to say that Ainsley has said the word up for months but I just wasn't sure it was real because what she says is "Uuuh".  But of course a kid like Ainsley isn't able to say plosives. P is likely a long way off in her repertoire of sounds. But when she wants up she say "Uuuh." so I guess I'm going to count that as word #1. We heard a little "Uh-uh and Uh-huh." for a few weeks. Maybe those count.  Now we are hearing "Naaa." which I'm pretty sure is "No." or a variation of "nu-uh". We've even heard her say "uh-uuhh-uuuuh" with the right intonation when asked to say "I love you" at bed time. It still warms my heart even if it doesn't sound "right". What is cool is that she is TRYING to say all kinds of things. The first step in anything is being motivated to try.

Clearly speech that can be understood by a stranger is a LONG way off. But this is progress and I'll take it!

Here is a list of Ainsley's signs in the approximate order learned since she was a baby. Same thing, looking back I'd have to say Ainsley learned the sign for all done when she was about 9 months old. Only her nurse taught it with one hand. We were afraid she was "stimming" but she was saying all done. She did it all the time! It must be hard having a mom that is so slow to catch on. Her signing is imprecise but when you see it like this it's clear she knows what she's doing, it's just difficult for her to execute the motor skills. I think it's time to teach her some more.

1. all done 
2. more 
3. book 
4. milk 
5. up 
6. water
7. ball
8. off 
9. on 
10. help 
11. stop 
12. mommy 
13. daddy 
14. eat 
15. please  
16. thank you 
17. DVD 
18. dog 
19. shoes 
20. socks 
21. doll 
22. drink 
23. sleep 
24. cracker 
25. cat
26. apple 
27. bath 
28. wait 

Enjoy the video!

Off She Goes

This..........

.....is my ticket to freedom. Isn't that terrible? I admit it....I've been looking forward to this day. All three of my kids are finally back in school as of today. Sure I get a little sad when I think of how quickly they are growing up. And I do miss them a little for the few hours they are at school but the benefit of being a stay at home mom is that we get a LOT of together time. And Ainsley still has 2 years of preschool before she goes off for full days of Kindergarten.

Ainsley looked a little confused when we pulled her out of bed far earlier than usual for a bath and then again when she saw the school nurse this morning. It's been 3 months. I think she'd forgotten about school.

She got pretty excited when they went out to wait on the porch for the bus. I think she finally remembered.

He's a very nice guy and we're lucky to have him.

When they got back at noon he reported that Ainsley had a good first day back at school. She raised her hand at circle time to be the kid to "walk" around the room and show all the other kids the the picture for the month (September). Happily participating on the first day! Awesome!  Now that she's out of the wheelchair after recovering from hip surgery it will be nice to be able to let her use her legs. At recess I want her to do more than just sit by and watch the other kids play. So he walked her around a bit.

There are some kinks to be worked out as the old teacher (who had a hard-of-hearing background, ie. lot of sign language and was fabulous) left and the school didn't get around to hiring anyone to fill the spot. That means we have a substitute for a few weeks. It stinks to have to get acquainted twice but that's life. Especially for special needs kids.

She came home with her first art project. A VERY adorable lacing project from "The Very Hungry Caterpillar."

The only thing I don't look forward to about the kids going back to school is the onslaught of paperwork and art projects that come home every day. Though the caterpillar is very cute.

I'm hoping that this few hours of extra time will equal more blog posts and things checked off my to-do list.

Aside from me (ha, ha) I think it's great for Ainsley to be back in school. Typically a curious kid gets into all kinds of things at home, but a kid that has impaired motor skills can't go where they want or do what they want without help.The problem is compounded when the child is also non-verbal and cannot say what they want.  Having a few hours a day of school is basically like 2 1/2 hours of intense therapy. Everything in the class is structured to help delayed kids learn.  I'm very excited to see how Ainsley blossoms this school year.

Family Vacation & The End of Summer

After my last post I really hope you all haven't been worried by my silence. After all the eyelid surgery research we went on a family vacation, nothing fancy this year. No airplanes involved. We stuck close(ish) to home which is also better for the budget. After returning from vacation I always feel like I need a vacation from my vacation (hopefully I'm not the only one who feels this way). It was great to be home. I was looking forward to enjoying the final days before school started and intended to put together a nice blog post about our vacation but found myself overwhelmed by trying to choose which of the hundreds of photos I took to post. I was also quite busy doing a lot of medical research and coordinating for Ainsley. There is a lot going on there but I'll have to write about that later.

When I was a child our family spent a week on Orcas Island every year. As a kid year after year it was a little boring but now that I'm grown with kids I can understand what my mom liked about it. Then when Steve and I first started dating we stayed there together. My bachelorette party was there. And we visited since. So there is a history. For once in my life I planned a little ahead and started researching places to stay on Orcas back in March (those of you who are planners probably think this is late, but for me it's e-a-r-l-y). Sadly the cabins were booked out a year ahead. But I was able to snag some weekday camp spots at Moran State Park.  A huge part of the fun (after the 1 1/2 hour drive to Anacortes) is the ferry ride through the San Juan Islands.

We planned this trip with friends. The big kids are all very close friends so this trip was SO much fun for them. My kids had been looking forward to it all summer.

The camping reservation website now has pictures of all the campsites and after some looking around I reserved two spots right on the lake so we could camp side by side. What I didn't realize that the road nearby was actually a highway and not just the 10mph campsite road. So there was some traffic noise but I was okay with it because the kids really loved being right on the lake and being able to go for a dip at the spur of the moment. Nothing is better than camping and swimming in the lake with your BFF.

Everyone went on a hike around the lake while Ainsley and I stayed back. Being unable to walk is hard sometimes. Camping for her means sitting in a chair for days since crawling in the dirt isn't so great. But she was happy to play with her dolls and I was happy to pick up the doll clothes out of the dirt.....for awhile. Then it got old.

We drove up to Mount Constitution. My mom wasn't a big picture taker. One of the few childhood photos I have is of me in this lookout tower.  Adrian wouldn't go up (afraid of heights like his mama) so I didn't get my picture of the kids (just Evie). Wah! All that way and didn't get the photo. That's life.

 Steve stayed below with Ainsley (look close and you can see them). The view is breathtaking.

We spent hours swimming in the lake. Even Ainsley went in. She's quite a little fish for a girl with a trach.

She was SO happy. I love this girl!

One of the best parts of camping, in my opinion, is eating dinner by lantern light and playing Candy Land. It's tradition.

And of course the Smores and roasting marshmallows.

We live in the Northwest but no matter how many deer we've seen the kids are always SO excited to see another.

Ainsley is notorious for crazy bed head hair. She is used to sleeping with a loud compressor for her warm mist collar (which we obviously couldn't bring) the noise helps us sleep. The silence was deafening, except for some critters running through the campsite during the night. And unfortunately Ainsley's noises. We used an HME instead for moisture but it doesn't work as well and she did need some mid night suctioning. Our neighbors thought we were blowing up our air mattresses at 1:00 & 3:00am when we had to suction her, which is kind of funny. Nope. It's just the usual mid night care that a trach kid often requires.  She also rolled off the camping mattress a few times each night and set off the pulse-ox. After two nights Ainsley's suction machine and pulse-ox needed a charge and we were ready to pack up although next year we might try a longer stay and charge her equipment in the ranger's office. We'll see. But we'd come all this way, and two nights on the island wasn't enough. I'd booked a hotel room which was sounding pretty good about now.

We hit the playground on the way out. It is a little heartbreaking sometimes that Ainsley is unable to do things other kids can't. Most of the time it doesn't bother her, but someday it probably will. Like when the big kids ran off to play on the playground and left her behind. Do you see the look of longing?  She reached out for them and signed help. Tear my heart out.

 She can't crawl around in the gravel but she can swing on the tire swing with her brother and sister. So I helped her do that. She was SO happy....until she started to get dizzy but she still kept hanging on. That's a new one for her vestibular system.

Finally it was close enough to check in time at the hotel. It was a bit overpriced for what the rooms were like, basically you are paying (a lot) for the convenience of being right in town. It's a historic hotel that could just have easily been built in the 1980's based on the decor. I was so glad I'd decided to book one night instead of the two I'd originally wanted.  But it was GREAT to get cleaned up. Only I wish I'd made sure they had a bathtub. It was quite a trick holding a heavy slippery disabled and trached kid in the shower.  It's not something I want to do again.

Our friends had gone on their way, and it was nice to have a day to explore and shop around the town (actually I was corrected it's technically a village). We ate twice at the same restaurant. The breakfast was fantastic and what a view! Adrian shoveled in more pancakes than I thought was possible.

I know you wanted to see a closeup of that Mermaid Crossing sign.

The kids had their first ever gelato (I guess we don't get out much.).  Surprisingly Ainsley wanted a taste and seemed to like it which is odd because she doesn't like ice cream and it usually makes her gag.

Orcas has a lot of interesting art around. Hanging from the trees. In the street. In the shops. I loved this box turtle that just happened to be on the sidewalk. I thought it was cute that the kids were standing on it. Then after I took the picture I noticed it was for sale for $6000. Quick! GET OFF THAT TURTLE!

They also have cute shops with interesting things to tempt the tourists. I actually got a few clothes and things for me which I never do. Steve was VERY happy especially that I got a cute pair of shoes. I guess he's tired of seeing me wear the-same-old-stuff.

The kids begged for a new stuffed animal and we gave in (guilt from growing up on the poor side) so I felt I had to pick something for Ainsley or it just wouldn't be right. I loved Raggedy Ann as a kid so that's what I chose. Ainsley was SO excited and happy! She just kept kicking her little legs with excitement. Now Raggedy is going everywhere with her.

The village is small. We were able to see it all in a day, had dinner and headed home on the ferry afterward. There was an almost full moon. It was beautiful. 

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The following day we took the kids to the zoo for the afternoon. Late but better than never. (Thanks grandma for the annual zoo pass!)  The zoo is one of my favorite places to take pictures. I think it's every Seattle family's tradition to take a picture with the baby elephant statue.

We even dared to let the kids hold Ainsley up so she could be in the picture this year. With three kids in the dark of the bushes, one of them (guess who) being grumpy, this is about as good as the photograph is going to get.

We also saw the usual suspects.

  As well as......

The odd and seldom seen tapir.

The kids' favorite, the penguins. Steve got to see the new exhibit for the first time and was impressed. The old exhibit was VERY old. Grandma had donated some money for the building of it and so the kids' names were inscribed on little fishes outside the exhibit. We had fun searching for them.

We got to see the meerkat exhibit for the first time. The kids had been looking forward to that for months. What a cutie.

And they were extremely happy that the zoo kept the bats. They had been devastated when they learned the zoo had closed the night exhibit. It is easier to get pictures now that their cage is not pitch black.   I think we can thank Evie's 2nd grade teacher for their love of bats.

This past year has been so busy. We used to get to the zoo more often. I hope we'll go again soon.

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The grand finale' of our vacation was the circus! Back in May we all made lists of things we wanted to do this summer. It was Adrian's idea to go and we just got lucky to find out ahead of time that Ringling Brothers and Barnum and Bailey was going to be in the Seattle area.  Despite the PETA protesters (including a poor 10 year old kid who I felt very bad for) we had a great time. The animals looked very well treated to me. The show was pretty spectacular though not exactly the way I remember it as a child. My dad took us once and my recollection is that it was not nearly as flashy then. Though back then they did let you pay to ride the elephants and that is something I'll never forget, the feeling of coarse elephant hide and hair between my legs. My kids are very impressed that I can say I've ridden an elephant.



We decided to splurge since this was our vacation and got front row seats. The unobstructed view was fabulous for picture taking. Here are just a few of the pictures I took.

 This is the beginning of the show. I don't know why I like this shot so much but I do. The ring master was great!

Considering Ainsley's fear of people in costumes I was a little worried front row seats would be BAD. But she surprised us by being pretty interested and not scared at all. Luckily there was a low divider wall. I think it made all the difference.

 Even the clown didn't scare her. 

The mermaids in the parade were beautiful. 

The tight rope walkers going up an incline. No net. Yikes!

The Torres Family motorcyclers: riding 7 motorcycles inside a 16ft steel globe. 

The contortionists were a little too close. But WOW!

The trapeze artists.

I believe that's 9 tigers in there.

The dog walking one of the elephants.

 I think the confetti at the end was almost the most fun. It showered down on us like rain.

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We tried to enjoy the final days of summer despite the rain and the kids headed back to school on Wednesday. Ainsley starts on the 20th.  I love the summer but I'm ready for fall.

Well I guess you can see why it took me 3 weeks to write this post.