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Sunday, June 19, 2011

Just chugging along...



We are now almost 5 weeks after Mary's surgery. Mary is doing great and has been busy enjoying the sporadic spring/summer weather when it comes our way.

First time playing in the sprinkler...

 Hiking with my friend Victoria...we need to pack bug spray next time!

We visited with our Speech Language Pathologist this week through our local Early Child Development Center. I really like our SLP, she is very professional and is very easy to talk about speech and language related issues. We first met our SLP when we came home with Sylvie, so we have had a working relationship with her for almost two years now. I am impressed with the rapport she has built with both of my children in such a short period of time, and both girls have enjoyed working with her. Sylvie has met all her goals of speech and language so she does not require any more service in this area, however with Mary, her cleft will require support for speech development.

Mary has met with our SLP before, the first time was about two weeks after arriving home from China to do an initial intake assessment. Our second visit was right before her first surgery in late January to determine which letter sounds she was making before having her premaxilla correctly placed and lip closed. Our third visit was this week one month after Mary's successful surgery.

At this time it seems that Mary is doing great with language, she understands questions, responds to directions, and communicates with others through words, gestures, and eye contact. Mary has easily over one hundred words in her vocabulary and is beginning to combine these into two or three word sentences. We would say that we understand what she is saying about 70% of the time, but this would be much lower for other people. While she is doing great with language development, Mary will require support in developing her speech however. Now that her lip has been attached, she needs to learn how to use the muscles to move her lip to correctly form different letter sounds. Mary is doing great with her vowels and several letter sounds and combinations, and with continual practice they are very clear. Her next goal will be to work on certain constant sounds that she was unable to say before surgery (ie, p, b. m, t,s). Our SLP modeled lots of fun ways for us to help train her lip muscles such as blowing feathers, bubbles and whistles.

A second goal for Mary will be to learn how to drink through a straw. This is a bit challenging for her since she has to learn to cup the straw tightly with her upper lip, as well she still has two small fistulas behind her gum line into her nose which make creating a vacuum seal challenging. So far Mary has been VERY determined to learn to drink through a straw like her big sister. The SLP has given us some straws with a valve in them. These special straws look like regular straws, but have a valve in the bottom, and once you suck up the liquid to the top, it holds the liquid in the straw. So far Mary has had some success sucking through the straw, but it takes her about 25 minutes to drink about 2/3 of a cup of juice. She is determined to do it however, and does not want to stop or take a break. We are always impressed with her perseverance and stamina ;)


 We had kind of hoped that Mary would instinctively know how to suck on a straw after surgery, but this was not the case. We were struggling with how to explain to her to suck exactly. Another mom on an online support group for children with clefts shared that she demonstrated sucking her daughter's finger and then had her daughter do the same to her. This was a great suggestion because we could then feel when Mary was sucking on cheer her on. Right now Mary is inhaling through her nose each time she is trying to suck up, which is what is taking so long for her to drink through the straw. We'll give her more time to practice however and are confident she will figure this out.     

7 comments:

  1. I LOVE the piggytail picture of Mary! Her repair looks amazing...she looks different, but still sweet little Mary! :) I can't believe how long her hair has gotten!

    So great to her about her perseverance and determination with working on her letter sounds, drinking from a straw, etc...what great character traits to have! It's wonderful that she has a big sister to model all these things for her too! :)

    Would love to go for a walk together soon...if this weather would only cooperate!!! (Thea gets cold so easy...still climatizng) :)

    gayle :)

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  2. She looks so great! With Ty, he picked up on the straw very quickly. For him, it was a matter of reinforcement: suck the straw, get the juice. But I know that doesn't work for all kids, but for him, he was eating and drinking like a mad man for a year as he gained weight. I wish I could remember what we did, but mainly, we just showed him, practiced, etc... and once he got some juice, he kept at it. Good luck! And now that it's summer, you can do lots of bubbles too!

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  3. Sylvie looks great! She will figure everything out quickly... and she has great parents who can help her. The finger idea is great!

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  4. Wow, even one day can make such a difference! She is now able to suck up the straw all the way on the first go, which means I don't have to start it for her! We are still using the straw with the valve so it isn't so frustrating for her, but I bet by the next week or two we might be onto regular straws! YEY!

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  5. y'all are looking great - glad to see it!

    hugs - aus and co.

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  6. That is incredible Joyanne, that she can suck through the straw already...but it doesn't surprise me. And I won't be surprised that this adorable little bit of cutness is not going to blow you out of the water regarding her speech too. She is determined and she is going to go far in life.

    She is so adorable. I'm telling you, that smile of hers just kills me!

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