She Will Speak!

A friend recommended this book to me awhile ago. (Thanks Erica!) I found it to be really helpful by outlining the stages of language development in a way that is more technical but easy to understand. It gave me ideas for new approaches to getting Ainsley to vocalize. The woman who wrote this book happens to live in the greater-Seattle area. However she retired from private practice years ago, and now travels all over the country doing lectures and workshops. In addition she's a writer. 

At some point I thought: Wouldn't it be great if she would see Ainsley for an evaluation?! I'd been wondering whether Ainsley has the capacity for spoken language, because of her cerebellum malformation and the trach, but her doctors and therapists really couldn't or wouldn't say whether she will eventually speak. Although her receptive language is pretty good, and she is now signing about 25 signs, she really makes very few attempts at what most people would consider to be speech. However sometimes I swear I hear Ainsley mimic the intonation of complete sentences, such as "I want that." In a way I describe it as attempting to speak as a ventriloquist, albeit a bad one, without moving the lips or tongue. She just hasn't yet figured out that moving her lips and tongue changes the sound, or perhaps it's more accurate to say it takes too much effort for her at this time.

In Pam's book she talks about sometimes how parents will think their child has no words because the words are unrecognizable. This woman seemed to know so much about language development, and had so much experience as a speech therapist I thought she really might be the person to tell me if Ainsley will someday speak. And whether these "ventriloquist sentences" are in fat the beginning of Ainsley's attempt to speak. As a parent of three children, one with intense special needs, I often feel short of time. This year I've been seeking answers from the medical professionals. I need help sorting out which baskets to put my eggs in. Ainsley needs PT to help with gross motor skills like learning to stand and walk, OT to help with fine motor skills like drawing with a crayon, help learning to eat, in addition there are her medical needs: suctioning, g-tube feedings, increasing her use of the trach cap, making sure she wears her speaking valve, researching and scheduling surgeries etc, keeping up with her blog, and then you throw in speech. We've been working on sign language, a new AAC device and also true vocalization. It's a lot. I want to spend my time on the therapies that Ainsley is most likely to be successful in.  Did I mention that I have two other kids that need me?

So I contacted Pam via e-mail in the winter, asking if I could bribe her to see Ainsley. She must have sensed my desperation for answers. She said she was too busy, but to get back to her in May. A maybe, I was thrilled! I persisted and she agreed to see her in July. I was elated and very much looking forward to the appointment, which we had yesterday.  We talked more about her medical history, what signs she has, when she is most vocal. She watched her play, breathe, listened to her voice and talked to me at the same time about her observations and where she thinks she is at in the stages of language development. Ainsley has met the skills for the "Preparing" stage of speech: Voicing, Prolonging, Differentiating, she needs some work on Posturing.  She is now in the "Speechifying" stage of language development which includes: Projecting, Pitching, Intoning, and Laughing. 

She took a lot of notes and drew an image of Ainsley in the center of all this stuff (her medical issues and history are complex) in the center is Ainsley's voice and out of that is a straight line to speech. It's so simple but makes so much sense. Our path to getting Ainsley to speak is simply to work on her voice. Encouraging self-expression of all kinds and the use of her voice.  She will make more progress if she is encouraged to vocalize more. The more practice she gets the better. It doesn't help that she had no voice at all (couldn't wear a speaking valve because of a complete obstruction) for the first 2 years of her life. She got used to being quiet. And even now we still have to work to get her to keep the speaking valve on. She has spend a huge portion of her short 3 3/4 years "without a voice".

In addition she was able to answer some questions that had been bugging me for a very long time such as why her voice seems clearer when she is laying on her back. It turns out that because Ainsley has low muscle tone and a malformation of the cerebellum that she uses so much of her focus to control her muscles, tightening her torso for control over her body. When she lays down it frees up her diaphragm and other muscles to be used exclusively for vocalizing.  So perhaps we will make some time to play with her voice while she's laying down, not always, but sometimes. 

Pam also explained that the vocal cords are resting in the open position and the muscles bring them together to make sound and that Ainsley's voice sounding "growly" is from bringing the cords together too forcefully, and that it is a habit. Now things are making sense, she has a hard time controlling the muscles for vocalizing, just like she does for any other motor skill due to her cerebellum. There are times that she can produce a voice that is not growly, and so that is what we are to do. Encourage the maximum number of vocalizations using the non-growly voice. We aren't to try to get her to mimic animal sounds and vowels, because she's not there yet. That will come later. This bit of information is priceless. Now I have a picture of what the problem is and how to work on it. History shows us that Ainsley can master the motor skills, just that it takes more time and effort. There is no reason to think she cannot master control over the vocal cords too. Pam said, YES, she has no doubt she'll speak, but it will take time and effort.  

Pam gave me her second book on Apraxia, Apraxia Uncovered. Even though Ainsley doesn't truly have Apraxia, I expect this book to be just as good and useful Becoming Verbal With Childhood Apraxia. I'm very excited to read it. And to see Pam again next Tuesday! We have Evie's "Ballet Shoes" play this weekend and the dress rehearsal tomorrow so this is likely the last you'll hear from me until it's over.   

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.)