Tuesday, September 11, 2007

Recent Developments

After my last post, Kristin noticed my mention of KayTar playing with playdoh, and I realized that I haven't given any sort of developmental KayTar update in ages. We are seeing so many emerging skills, that I would be remiss in not filling you in!

Occupational therapy:
Because KayTar's fine motor skills are one of the only areas she scores on target for, her OT consists largely of sensory therapy. A typical session generally consists of an activity she is resistant to (playdoh, shaving cream, or finger paints) and an activity she craves (like time on the swing or in the ball pits). In the beginning, KayTar was fully resistant to certain things, to the point of gagging and vomiting at the mere touch of it. [If you are a newer reader to the blog, you can click this link and it will show a video of KayTar gagging, because there is a dot of shaving cream on her pointer finger.] Since we switched her OT from dedicated feeding therapy to a more board spectrum sensory therapy, we have seen huge improvements. While participatory, she always reaches a point when she is finished. She balls her hands up and refuses to touch anymore. Our goal is to get her to touch it one more time after she reaches that point. Then we put it away and she gets to wash her hands and splash in the sink. Always a good reward. Now, we paint almost every day at home. She begs to do it. Playdoh is also slowly becoming a favorite, especially on her terms. At home, she uses toy cooking utensils and cookie cutters, so she doesn't have as much skin contact as she does in therapy and she is able to control her level of comfort. Shaving cream, though, while we are seeing amazing strides, she reaches her point of no return with that one much quicker than the others and she does not desire to touch it outside of therapy times. But a year ago just a dot of it on her skin would make her vomit, so the fact that she will now pick up a basketball with shaving cream smeared on it and toss it through the hoop, is a miracle. This growth in her tactile sensory tolerance levels has not yet translated to her eating habits, but everything comes in baby steps. In fact, she had strep last week and it didn't land her in the hospital. It never got to the point of full refusal of food and drink and her senses never went so haywire as to induce vomiting if we opened food packaging in from of her, so I do think slowly, we are making progress that matters.

Speech therapy: She recently switched from a once a month visit from an ECI therapist to a once a week session with a private therapist. We will be seeing her twice a week, once an additional slot opens up. In the last week, we have seen HUGE improvements with KayTar's speech. I think she is probably approaching the verbal milestones expected by the second birthday, but for her, it is wonderful. Here are examples of new things she is saying:

In the car, driving to pick up BubTar, she said "See that?" while she pointing out the window.

She now says, "Help, please." when she needs help. Many time she starts out whining, before we prompt her with "What do you say?" and then she remembers how to ask.

Instead of her gibberish phrase, "A-gah kah-sanks." that she used to say when trying to hand us something she no longer wants, she now says "Take it!" but we generally have to prompt her for this response.

She is able to mimic 2-3 word sentences if we present them to her, such as "I want milk." or "Help me, please."

She is willing to repeat longer sentences if we feed them to her one word at a time. "I want a bottle of milk." She repeats each word individually after we say them, but she can't say it all as a sentence typically.

While her typical sentences consist of two words, like "Help, please." or "More milk." or "Sit down." or "Play cars." She will occasionally say a longer sentence. Today while playing Don't Spill the Beans (which she thinks is called "Spill Eggs.") she said, "Oh no. Eggs fall down." which is monumental in KayTar speech. She was mimicking what I had said the previous time the beans spilled, but parroting or not, she is making very real strides. The more she repeats these phrases, the easier she will be able to use them herself when the situation arises. She still struggles with questions and does not understand things that are not concrete. But new things seem to be emerging every day for her, and it is definitely exciting. Yesterday, her developmental therapist commented on how rather than simply naming objects with her words, she is beginning to interact with people through them. It is so true, and I think that is what is most exciting about it all. Instead of being an island unto herself, she is actively trying to engage us, using speech among other things. She will bring the ball into the living room and tell me, "Sit down. (pause) Please? (pause) Play ball. (pause) Kick!" or walk up to me and say, "Walk!" and start walking so I will follow her. Typically we end up in the bathroom and she says, "Brush teeth? Purple? Little Einsteins?" She loves to brush her teeth, her toothbrush is purple, and the toothpaste is Little Einsteins. So, while she isn't developmentally on target, she is able to communicate not only her needs to us (food, drink, sleep), she is now able to communicate her wants to us as well. It is pretty special. Sometimes I feel like she is a foreign exchange student with a little KayTarese/English dictionary in her head and she has to look everything up before she says it. She memorizes important phrases and uses them over and over, just like I would do if I was in a foreign country. The flow of conversation does not come easily to her, but even so, she is learning to operate within those confines and let us know what she needs and wants.

Physical therapy: She is walking, of course, since 25 months. She is not running, but walking quickly. She attempts to jump, but her feet usually don't leave the floor. She's gotten them both maybe a half inch off the floor maybe five times out of a hundred? But she is trying! She is getting better at squatting, although it is still difficult for her. She can go up the stairs, while holding someone's hand and using her dominant leg, she struggles more with trying to go down the stairs. I think she is probably the farthest behind physically speaking. When we are out at parks or the Children's Museum or even the grocery store, I see babies roughly 1 year in age consistently outdoing her. But she is progressing, no matter how slowly. There were times that we wondered if she'd ever walk at all, so slow going or not, we are still incredibly happy.

The day she received her walker, last December.

Developmental therapy: Her ECI caseworker is also her developmental therapist, and we just love her. We were supposed to get shifted off her caseload a couple weeks ago, all of her Tues/Thurs appointments were, but instead she changed us to Mondays. Awesome. In DT, she basically plays in developmentally appropriate ways. I think KayTar gets to call the shots just a bit more than she does in her other therapies, but whatever she wants to do, it is used to specific purposes. I think I've learned the most in developmental therapy. Watching the therapist interact with her and use so many little things to teach her different concepts helped me realize that we can do the exact same things with her, and we have been for a year now. A year! I can't believe it has already been that long. Because DT is across the board therapy, there aren't any specific achievements that aren't already listed in the other areas.

That's where we stand for now. Next week she has a big ECI evaluation and so I'll have lovely numbers and statistics for you all then. Whatever the numbers say, she is doing well. This time last year, I had a non-verbal kiddo who was scarcely crawling and not interacting much at all. This day, one year ago, I was preparing for her very first specialist appointment. I was terrified. The ground had been knocked out from under me and I didn't know how to stand again. This has been a year of marked development for both KayTar and myself. She's been learning to live in my world, and I've been learning to live in hers; the one filled with doctors and hospitals and therapists and tests. The world where things don't always come easy, questions don't always have answers, and we don't always hear what we'd like to. But when I scoop her into my arms it doesn't matter whose world we are in, it just matters that we are together.


Anonymous said...


And way to go, Kyla.

You're one hell of an inspiration, chica.

Katie said...

That was a fab update on the little miss. Such an inspiration that child, good luck and more for next week's eval!

Kathy Gillen said...

Wow! What fantastic strides. You both work hard at reaching these goals. My daughter only has one therapy session a week and I sometimes feel overwhelmed. You've done a wonderful job advocating for your daughter. Way to go!!

Junie's Blog said...

I had no idea she had made such great strides and accomplishmenst! Thanks for the updates Kyla! Way to go, Kaytar!

Bea said...

Thanks for the update. I really enjoyed this post.

Kristin said...

Oh wow...without having heard any official updates for awhile it is just AMAZING what that girl is up to these days.

I don't remember that shaving cream video but you weren't kidding about the gagging. I have never seen something like that. Easton used to hate it but it never induced gagging. Just crying till we washed it off. I'm so amazed that she's been working through all that stuff so well.

And her verbal skills! My word! She is catching up so quickly that she's gonna be ahead of them all soon!

Thanks for the update. I love to hear 'em. I'm so glad she came through that bought of strep so "easily". :) I'll be looking for what the "experts" say numbers-wise but I know she's kicking butt. Good girl!

You are one amazing mama, Kyla!

Mad said...

You know, with the Just Posts just wrapping up added to my reduced blogging schedule, I often only manage to get here after you've written 2 or 3 posts. The last couple of weeks that was a terrible thing b/c it felt as if all your troubles were just piling up.

Today, though, I get to see this wonderful developmental report on the heels of all the stress worries, and even though it's not all good news, the post feels like a bit of light after a dark stretch.

~aj~ said...

Wow, what an amazing year KayTar has had. I've been able to pick up new developments here and there, but it's amazing to just read it all at once. She is one fantastic little girl!

thailandchani said...

This is fascinating to read! Since I am relatively new to your blog, maybe some time in your archives would be good to get a more complete picture.

It all sounds wonderful though... wonderful development and a good way for her to get her voice.




Anonymous said...

Wow! Great pictures! I am so glad to hear how well she is doing. Those hands remind me of Sophie this afternoon.

dawn224 said...

Wonderful :)

moplans said...

Aww Kyla. Congrats to you all on these amazing accomplishments.

flutter said...

I am so proud of her!

carrie said...

What wonderful progress. Really, really wonderful!

Beck said...

She's making such wonderfully big strides, isn't she?
The Baby can't walk downstairs well, either - she's just too physically SMALL too handle big steps.
And it's been said before, but you ARE such a good mama. Look at your love and commitment shining through.

Janet said...

Your pride and devotion to KayTar come through so clearly in your writing. Way to go; both of you!

Anonymous said...

I'm so glad I found you Kyla. Wonderful update! And you're right, whatever the world we meet our children in, the bottom line is that we're able to hold them and get them through this tough stuff. That, in and of itself, is a gift.

NotSoSage said...

That last sentence, Kyla. You are amazing. I can't believe that I've known you for a whole year! What progress. Go KayTar!

Mimi said...

Wow. So many accomplishments, and such great strides. You must all be very happy -- I'm very very happy for you, and amazed at all you've managed to do, all of you. Congratulations.

Julie Pippert said...

She's just doing SO fantastic.

From an outside perspective, I will say that she appears on the spectrum for her age. I understand there is more than meets the eye, but...from the outside perspective she really is pretty two, ifykwim.

Awesome progress, really.

Congrats to all of you on it, and GREAT update, thanks. :)

Using My Words

Anonymous said...

Your picture of your daughter with her walker reminded me of my daughter Katie, with her walker. Katie didn't start walking until she was three and I can still remember the first time I saw her walk across the kitchen, on her own, it was shocking and wonderful at the same time.

Amy said...

Go Kaytar!! She is doing so, so well Kyla. That is awesome!!

I can't wait to get the girls together again!!

Run ANC said...

She is just making such big strides! I am so, so happy for her. And you. You are both an inspiration.

Christine said...

do you think a lot of her speech improvement is because of the hearing aid? it really seems like you've noted significant change since then.

you and josh are really doing a wonderful job, kyla. kudos for being so strong!

Aliki2006 said...

What a mix--the good with the not-so-good, the ups with the downs. But it sounds like she's been making lots of leaps forward!

crazymumma said...

Awesome developments on her part.

I do not know if I have said it before, but she is blessed to have parents so on the ball and willing to go the distance as you two.

kittenpie said...

Wow. So good to hear how far she's come. It must just burst your heart sometimes.