Update on the nitty gritty

Many have been asking about how Noah's doctor visits have been going since we have been in Tuscaloosa... so I thought I would share what we have been able to accomplish so far.

1.  Doctors seen:  pediatric neurologist, pediatric surgeon, pediatric ophthalmologist, pediatric nutritionist, and pediatrician

2.  Doctors still to be seen:  pediatric gastroenterologist

3.  Diagnosis progress:  We have ruled out Krabbe disease, ALD, peroxisomal disorders.  We are waiting for test results for Alexander and Canavan diseases.  

4.  Feeding volumes:  Immediately after Noah's g-tube surgery, he was able to tolerate 4oz/120mL of formula per feeding.  We have worked our way up to 5.6oz/170mL of formula per feeding over the last month.  We are hoping this translates into positive weight gain.  Vomiting is still occuring periodically.

5.  Feeding issues:  Noah is incredibly unpredictable when it comes to the bottle.  At times he is willing to take the entire feeding via bottle, other times he will only take an ounce or two and we must pump the rest.  He recently has started making a "brussels sprout" face in the middle of feedings... which involves screwing up his face and spiting out any formula in his mouth... that basically signals the end of his willingness to take the bottle.  This unpredictability is emotionally draining for me as I wish his response to the bottle was a little more consistent.  

6.  Rise School:  We met with the service coordinator at the Rise School and toured the facility.  We loved everything we saw and are excited for Noah to begin attending in August.  Noah will be evaluated by an occupational therapist, physical therapist, and speech therapist on April 15th to determine what specifically we need to work on.

7.  Whew.