*** September 29, 2003 thru October 5, 2003 ***

The days have been spent trying to get Leah to take a bottle.  I try to feed her at least a little bit every two to three hours.  Since I'm not breast feeding, I am trying to pump but it's not going very well.  I'm having to supplement more than half of the feedings with formula.  I'm considering quitting pumping because it's taking too long to pump and I'm not getting much time to rest between feedings.  For more information regarding her feedings, see the Special Needs section.

We have had several visitors from neighbors and my co-workers.  They have all been so loving and kind toward Leah and I appreciate them all.

*** October 6, 2003 ***

We went to our first follow-up appointment with the plastic surgeon today.  We discussed the surgical procedure, feedings, and the abnormalities.  The surgeon feels that she may outgrow the forehead, brow, and jaw/mouth abnormalities.  The surgery is still planned for nine to twelve months of age.  Follow-up in six to eight weeks to check progress.

*** October 7, 2003 ***

I spoke with a caseworker from Children's Home Society today.  We enrolled Leah in the early intervention program and set up a family support plan.  I also talked to the genetics counselor from Sacred Heart.  The DNA test results are:  no chromosomal abnormalities.

*** October 8, 2003 ***

We had our first office visit with the pediatrician today.  Leah weighs 7 lbs. 11 oz.  All looks good.

*** October 15, 2003 ***

Occupational Therapy and Physical Therapy evaluations today.  She resists to any type of range of motion of her extremities.

*** October 17, 2003 ***

Follow-up visit with orthopedic surgeon.  Not much can be done until she grows a little bigger.  Occupational Therapy will help improve flexibility in hands and fingers and Physical Therapy will improve flexibility in toes and feet.

*** October 20, 2003 ***

Follow-up visit for ultrasound of bladder and kidney.  She moved around and cried a lot.  It was difficult to keep her still.  The technician wasn't able to get a good view, but the doctor came in and was able to see what he wanted to see.  He feels that everything looks normal.

*** October 21-27, 2003 ***

I took her to Georgia to visit with family.  My aunt gave me a baby shower.  See photos here.

*** October 2003 thru December 2003 ***

The next 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

*** December 16, 2003 ***

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.

*** January 2004 thru April 2004***

January 2004:  Weight: 9 lbs., 6 oz.   Length:  24 in. long.

March 2004:  Length:  24-3/4 inches

April 2004:  Weight 13 lbs. 13 oz.  She gained a little over a pound in 2-1/2 weeks, which is a great improvement

4/19/04:  Leah is 7 months old today.  Surgery on her right foot to correct the vertical talus bone is scheduled for June 22.  However, she was examined recently by a Pediatric ENT specialist and he has recommended that she have tubes put in her ears as soon as possible.  She has had an ear infection for approximately 4 weeks.  The ENT would like to do the tube surgery at the same time as the foot surgery.  We are waiting for approval from the orthopedic surgeon, and if that happens, her surgery will be rescheduled for July.
 

There is great improvement in her hands.  The therapy and splints seem to be working very well.  She is using her left thumb to grasp things and I've seen her move her right thumb up and down, but she still can't move it out.  Improvement on her foot is unknown at this time.  Her next visit with the orthopedic doctor isn't until May 3.

*** May 2004 ***

The surgery for her right foot is scheduled for July 13, 2004.  She will be in a splint until the surgery and then will be in a series of casts for 12 weeks after the surgery.  The first cast will be from her upper thigh to her toes and heavily padded to protect the two pins that will be inserted in her foot.  After two weeks, the cast will be removed and a thinner cast will be placed on her leg and foot under anesthesia as outpatient surgery.  After three more weeks, the thinner cast will be removed and a shorter cast from just below her knee to her toes will be placed on her foot.  The pins will be removed at this time.