The Wheelchair Is Gone!

I am SO glad to get this thing out of my house. It's not that we may not need a wheelchair for Ainsley, in fact I am working to get her one because she's too big for a stroller, just not a 16" adult sized chair to accommodate a Spica cast. We packed up the wheelchair and took it to the hospital with us to our appointment today. One advantage of having Children's Hospital as your DME.

Ainsley with her surgeon. The amazing man behind this reconstruction.

He says things look great. You can see the hips look good on the x-ray they took today. We discussed whether to remove the plates that held her legs together post-surgery. We may try to combine it with the eye surgery we are considering for late August, early September.

She has been given the okay to resume normal activity. Because of the intensity of this surgery it may take some time for her to be fully comfortable bearing weight on her legs. Kids can self-protect for a long time afterward. Regardless I'm excited to try doing our normal things like holding her hands to help her walk across the floor or up the stairs and especially to get her back in the walker. AND...We get to stop using the brace when she sleeps! I'm so glad to be rid of that thing. I'll let you know how she does after we've given her a few good workouts (ha, ha). She's really recovered remarkably well. I didn't realize how well until they asked me if she was on any pain meds for it. ??!! Uh......no, not for months. I am amazed at how tough this little sweetie is.

Wowza Another BUSY Week!

Wow! Another busy week! We had a great Father's Day. Steve's such a good dad. I let him sleep in late, he deserves it. The kids brought him coffe and chocolate donuts (Steve's favorite) and played Harry Potter in our bed.

Can you believe this. She's now signing Daddy a LOT and did it for him ON FATHER'S DAY! Mommy? Not so much. Or maybe it looks too much like the sign for water. She asks for water a LOT. I always hope she's signing Mommy but she nods yes when I ask if she wants water. Can you tell I am a little jealous?

She really seemed to understand and enjoy the gift giving. She had a present she made for her daddy. So did the other kids of course, but I can only post so many pictures.Then we went for a barbecue at Steve's sister's house with Steve's dad. 

Then it was the last day of school on Tuesday.

Ainsley's class had a little ceremony. See my little yogini's fancy sitting? The girl is "bendy".

She enjoyed bubbles on the playground. We get to ditch the wheelchair now that school is out. We get the final x-ray on Wednesday and hopefully the okay to resume PT and use of her walker. I can't wait to really try out those new hips! Yes it's already been 3 MONTHS!!!!!

Me and my girl, trying some tastes and talking about food with her new "talker".

It's the Very Hungry Caterpillar! Her teacher made it. How cute is that?! Had to show you.

 

Evie's growing up fast. She said to me, "When I walk out this door I'll be a 4th grader." Ahhhh. It feels like yesterday that she started Kindergarten and Ainsley was born the following month.

I love this boy so much. He is totally at home with a pack of older girls, Evie's friends.

Why have I been so busy? BECAUSE I'M CRAZY! What are these kids doing? Rehearsing a play. That I allowed my 9 year old daughter to write, produce and direct. One of her friends is moving to England for a year and so we are now trying to do it in 1/4 of the time. The performance is on July 10th. How do I get myself into these messes?

These girls are a handful, can you tell? And I had them at my house for 3 hours on Tuesday, the last day of school, and for "Ballet Shoes Camp" for 8 hours a day on Wednesday, Thursday and Friday.

Even though Evie promised to finish the script (adapted from the book Ballet Shoes by Noel Streatfeild) the week before if I agreed to host the camp, she didn't. That meant we were up until midnight 2 nights working on it together. CRAZY. Thankfully I found the movie transcribed into text on the internet which gave us something to work off of. Still the last thing I wanted to do after 8 hours with 10 kids is spend 6 hours a night on the computer writing a script. And of course I ended up having to direct the director. It was exhausting. Thankfully our nurse picked up an extra couple shifts at the last minute or I might have lost my mind.

In addition we've had an issue with our elderly neighbor so Steve's started building a fence in the backyard to make her happy (he built our other fences). We're going to put in a tire swing for Ainsley (and Evie and Adrian) so we picked that up on Saturday.

In May I started the process of cleaning up the yard so that I could plant some vegetables with the kids, a dream I'd had that I started to worry may never happen given the state of our yard.   The years have been flying past since Ainsley was born so it dawned on me that I'd better "make it happen" or I would really regret it.

It was so awesome to have a few peaceful moments with Adrian to plant bean seeds. He loved it and it made the hours I spent weeding the beds totally worth it! It felt GREAT!

When we realized we'd run out of lettuce, I was able to harvest some from our garden for our salad for our Friday Night Pizza and Family Movie Night. We've never grown lettuce before.

Somehow Ainsley still found time to do some new stuff, like try to stand. Not exactly successfully, but still, WOW!

She learned how to get herself down from the couch by herself. I wouldn't have believed it if I hadn't seen it myself.

The turn.

And she's down!

Now that the week is over I'm looking forward to actually starting summer vacation now. If only we had some sun here in Seattle.

New Toys

Ainsley got two new toys this week. Lucky girl!

Her new AAC device, the Vantage. This is an older model that the school district had on hand. We got it just in time for the summer so we can try it out and decide if this is the right type of device for Ainsley. They provide a device to meet her educational needs but they expect that the child brings the device home and whereever they go in addition to school, so this will be "hers" as long as we need it.

Here is the primary screen. It's setup for 15 buttons per page, it can also do 45 when/if she's ready for that. From there you navigate to more pages that contain words and phrases. And those pages can link to even more pages. The device then "speaks" the words selected with the buttons. It's very very cool! And the big kids love it. Perhaps I'll post a video of it in action when we get it fully customized. I got the software today.

 

Ainsley started to get a little annoyed that everyone else was playing with her new talker. You can see how interested they are.

We tried out using a pointer made from a short pencil and erasers, since she has a little trouble isolating her point (she often has trouble getting the fingers back, although she did a really great point for the first time this week, see below.). Here she is pushing the button that says "I use this communication device to help me talk." Wow!

Look how great she looks?! If only she could point that well every time.

It even has a page for books, with the animals/words from "Brown Bear, Brown Bear What Do You See?" and Ainsley selected the animals on the pages using her device. I'm really excited to customize this device for her. It will be much more powerful than the Tech-speak she's been using. I think she's ready.

Later in the week I meet up with Steve's cousin's teenage daughter, Ehlana, who had a couple American Girl dolls she wanted to give Evie and Ainsley. Evie was so excited to present them to her sister.

 

 Ainsley's been jealous of Evie's dolls so it's really great that now she gets one of her own. She chose Samantha and Evie chose Molly. She also gave them a bunch of the AG books. 

 

 There was also a neat couch and bed. The girls had fun playing dolls together in the kitchen.

 

See how happy she is?! Thanks Ehlana! That was so generous of you and it made the girls very happy! We're going to have fun over the weekend playing with our new toys. I hope you all have a good weekend too!

Creepy Crawly

I'd almost forgotten about this guy. While we were out working on the yard over the weekend my son brought out the giant caterpillar. I think we all can remember the joy of crawling though these things when we were a kid. Before we had a chance to put it away Ainsley surprised us by crawling through it. Not once but multiple times. After having her hips and legs cut apart and put back together I'm amazed that she can crawl this well already. It's been 3 weeks since she got out of the spica cast. She's been okayed to do whatever she is comfortable with. Unlike adults, kids listen to their bodies and when they experience pain they listen (for the most part). Dr. S. said she could resume crawling at 2-3 weeks post-removal. So the timing is good. I think she was in more pain following the last, much less invasive hip surgery (open & closed reductions). I am so excited, June 30th we have her follow-up appointment and I'm expecting to get the all clear to resume normal activity. I've let her take a few steps with me supporting 90% of her weight and it's interesting to see her steps are much more forward. I'm reserving judgement but hopeful to see how she does walking.

SO CUTE!

Those Eyes

How I miss those eyes. When Ainsley was born she didn't open her eyes for weeks. When she was in the hospital the ophthalmologist saw her and after checking her over, reassured me that he was not worried about that. But I was. Even with all the other, bigger, things we had going on. She did finally opened them and I was so thankful. We learned she had a condition called ptosis, the medical name for droopy eyelids.

They told me it could be corrected with surgery and that her eyes would look "normal". Being naive I took that comment at face value. I admit, I looked forward to the day.  Little did I know that just a few months later I would give anything for them to look just the way they did right then.

When Ainsley was 9 months old she went in for her second cranial reconstruction to repair the sagittal craniosynostosis and the bulging of her forehead that it caused. In the process of all that bone being moved around (although the the result was good for the forehead shape and gave her brain room to grow normally) the ptosis worsened dramatically and her eyes appeared slanted.  Even though she was such a baby at the time, and almost 3 years have past since then, I still miss seeing more of her eyes.

Over the years we have been in the process of having Ainsley evaluated for a ptosis repair, a tarsal switch procedure, which we thought we might do this summer. We met with the surgeon again today and decided to wait until early September so we don't have to keep her out of the sun all summer. He also said that while this will improve her eye function some she may still require a frontalis sling or another procedure as a teenager. TEENAGER.

My expectations have changed. I no longer hope for "normal", I don't even hope for "like she was before". My hope is that everything goes well (there are no complications) and things are fixed well enough that we  no longer have to endure stares in public, that people will stop asking if she is blind (she can see just fine) or commenting that she "looks like she needs a nap". I want people to be able to look into her eyes and see her. It feels like a long way off, but I know September will be here in the blink of an eye.

Crawling 2 Weeks Post Cast Removal

At the cast removal I made a special point to ask about crawling, meaning when it would be okay for Ainsley to resume crawling. The surgeon said to wait 2-3 weeks. I've had my eye on this cheeky girl because when she was sitting on the floor last week I could see her thinking about it and moving onto her hands just a little, testing things. I had a feeling she was getting ready to try. Today marks 2 weeks since the cast was removed and sure enough she decided to crawl. Lucky me she was slow getting onto all fours and I was able to grab the camera so you get to see.

Bearing her weight on hands and knees, looking  a tad nervous, getting into position.......

Ready, Set, Crawl! (She looks so determined.)

She made it about 3 feet over to me and up on her knees.

It's a little early for this, so I'm not going to let her do it too much. And I could tell she was "done".  I'm not sure if it's painful or not, maybe just uncomfortable. It was great to see her moving! It's been 2 months.  I can almost imagine her fully recovered from this surgery.  I can't wait to test out those new hips! (Not until July though.)

Sign Language & Communication

I hope everyone had a nice Memorial Day weekend. We spent Sunday with Steve's family. I was surprised to realize that some of the family didn't realize Ainsley can communicate with us. So let me explain.

The way we vocalize is our bodies force the air we breath up through our vocal cords and that produces sound. People with a trach exhale through the trach tube so the air doesn't get to the vocal cords, or at least not well enough. So a person with a trach may wear a speaking valve. This forces the exhaled air up through the vocal cords. Breathing in the trach and out the mouth/nose takes extra effort and Ainsley doesn't like it much. Plus she wasn't able to wear a valve until after she was 2. So essentially being left without a voice during the early stages of language development has not been good for her learning to speak.

In addition Ainsley's cerebellum, the portion of the brain that controls movement, is undersized making everything that involves movement more difficult for her. Speech requires a lot of movement of the lips, tongue and face. In addition it requires motor planning which is also controlled by the cerebellum.

This is why while other kids are hitting milestones we celebrate "inchstones".

Over the past year we realized that Ainsley's receptive language was pretty good. She knew a lot of words. How do we know this? Check out this post. 

We've been working on sign language and PECS cards since she was practically a baby, knowing she was at severe risk for language delays due to the tracheostomy.  But because of the cerebellum malformation she had a hard time performing signs. She actually was doing a few signs at a very young age, we just couldn't tell what they were. At one time I'm embarassed to say I thought maybe she was autistic because she kept doing this thing with her hand that looked like "stimming". She was actually signing "all done" with one hand because her night nurse Theresa taught it to her that way.  Then there is milk, which looks just like "all done" when you do that sign with one hand. And both of those look like "hi". So we were very confused because of course for a young baby those are the first signs you learn and they all looked almost the same.  Nowdays I have the same problem with "mommy" and "water" which have only a subtle differentiation. I keep saying "Ahhhh, you said mommy. Did you say mommy?" and she shakes her head "NO!" "Water."  Shucks! Although she does know the sign for "mommy" she doesn't use it often.

So it has been difficult to tell exactly when a sign was mastered but here is a list of the signs she knows in the approximate order she learned them.

all done
milk
hi
book
more
eat
drink
ball
help
up
off
baby/doll
thank you
hat
bed/sleep
water
shoes
daddy
mommy
please
girl
boy
dog
DVD

Woohoo! We are up to over 20 signs!