Archive for December, 2003

 

Follow-up appointment with orthopedic surgeon

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14 weeks old

 

 

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We drove to Shands Hospital at the University of Florida in Gainesville and met with the geneticist.  He advised us that he is officially diagnosing her with Freeman-Sheldon Syndrome (aka Whistling Face Syndrome) with Arthrogryposis.  For more information regarding this syndrome, click the Special Needs link on the main menu.  He informed us he had seen one case before, and the gene came from the father.  There are no reported cases on my side of the family, and I have no idea about the father’s family.  He predicts she will live a happy, healthy life with therapy, and although she may never play the piano, this will not be a major obstacle to her living a fulfilling life.

 

 

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The past several months are a whirlwind of follow-up appointments and my returning back to work.  Leah went through a round of splints for both hands and her right foot.  She has also been through serial casting of her right foot.  She is progressing normally with her weight and feedings and developmentally she is doing very well.  She spends a good deal of her time laying on her back.  She hates being on her tummy.  She enjoys picking up her toys with her feet and playing with them over her head with her hands and feet.  Therapy is going well.  She cries when the occupational therapist is stretching her hands.  It is difficult to sit and watch these sessions, but I know it has to be done.

 

During Thanksgiving and Christmas and the beginning of the New Year, we went through the colic.  I bought every type of bottle in the stores trying to find one that she could use.  I finally settled on the Parent’s Choice bottle with a Parent’s Choice Nuby Nipple and I have enlarged the hole slightly.  The nipple is designed for teething, but it appears to help her with suction.  She tends to chew on the nipple instead of suck on it.  Feedings gradually improve and only occasionally do we have problems with formula coming back up her nose.

 

She had the colic for approximately 6 weeks and a lot of gas.  She kept refusing the bottle and would barely take an ounce at each feeding, about every 2-4 hours.  The longest period that she sleeps is about 5 hours, maybe once a day.  Otherwise, she sleeps from 15 minutes to an hour and stays awake for several hours, usually in a very fussy mood.  She loves to be held, cuddled, and rocked.  I’ve spent most of my nights sleeping in the recliner chair, holding her.  Her sleeping and feeding habits improved greatly after she turned 3 months old.

 

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12 weeks old

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12 weeks old

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11 weeks old

 

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Following up with orthopedic surgeon

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Follow-up appointment with orthopedic surgeon.

 

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