Willem this past friday!!
The story of Willem's lack of smile is that again he doesn't have the cranial nerve to make his mouth move. So he can't purse his lips together to suck out of a straw. (he compensates with his tongue) For awhile I was distraught with the fact that he would not be able to kiss, really cried about that one BUT (he compensates by closing his lips and making a smacking sound ~ which makes my heart sing) In reality he physically cannot pucker up for those things but he is so amazingly smart at the ripe old age of 2 1/2 that he is finding ways to work around it!!!
Gosh i love this kid!!
Unfortunately the fact is he cannot smile or for that matter frown. He does not have the natural ability to just have his mouth closed so he drools a lot. He has difficulty in the clarity of his speech mainly with words starting with P,M, and B as you need closed lips to make those sounds. With our AMAZING speech therapist we are working on prompts to help him close his lips so he can be understood! He compensates by moving his Jaw so that he can get his lips closed.
I have also been introduced to the fact that he has paresis and not paralysis as he does have minimal movement in his face and he does have feeling. I know i have said dozens of times he cannot smile BUT if you look really closely you can see the slightest movement on the right side of his face when you know that if he could, he would be smiling. He also has feeling on his face we use a vibrating toy as part of his facial work and he will tell me that it tickles and he can feel when he has drool on his chin.
Part of Willem's speech therapy is to do lots for facial massage. In hopes that since he is not able to use his upper lip regularly atrophy will not set in! Let me tell you we both love that, every night I do his tapping (the massage starts with me tapping then stretching and rubbing his sweet little face!)
On the same note as not smiling when he cries his face does not move no scrunching up of the eyes and the forehead..no sour puss of a face. I can recall back in the beginning one of his therapist saying "that is not a real cry... look at his face!! "
Gosh i love this kid!!
Unfortunately the fact is he cannot smile or for that matter frown. He does not have the natural ability to just have his mouth closed so he drools a lot. He has difficulty in the clarity of his speech mainly with words starting with P,M, and B as you need closed lips to make those sounds. With our AMAZING speech therapist we are working on prompts to help him close his lips so he can be understood! He compensates by moving his Jaw so that he can get his lips closed.
I have also been introduced to the fact that he has paresis and not paralysis as he does have minimal movement in his face and he does have feeling. I know i have said dozens of times he cannot smile BUT if you look really closely you can see the slightest movement on the right side of his face when you know that if he could, he would be smiling. He also has feeling on his face we use a vibrating toy as part of his facial work and he will tell me that it tickles and he can feel when he has drool on his chin.
Part of Willem's speech therapy is to do lots for facial massage. In hopes that since he is not able to use his upper lip regularly atrophy will not set in! Let me tell you we both love that, every night I do his tapping (the massage starts with me tapping then stretching and rubbing his sweet little face!)
On the same note as not smiling when he cries his face does not move no scrunching up of the eyes and the forehead..no sour puss of a face. I can recall back in the beginning one of his therapist saying "that is not a real cry... look at his face!! "
I realize that I am completely focusing my writing on Willem but Benjamin has been here for all of this as well!! And I can so clearly hear his little voice as we had a friend over for dinner and yes we were talking about Will and just our lives in general and Ben said "Well you know Willem will never be able to smile, Because God made him special."
Yes my heart skipped a beat at that moment in time!
For now... good night!
For now... good night!
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