5/16/00 8:45 AM

We are sorry that there hasn't been an update in several days.  I think that the sleep depravation has caught up with us and thoroughly kicked our butts. Monday Arran went to visit the Orthopedic Surgeon and he took the casts off and replaced them with new ones.  Arran didn't seem to mind the procedure too much.  This will have to be done 4-5 more times. Then he may need a minor procedure to snip his achilles tendon.  After that he would wear a cast for 3 weeks and then he would start to wear special braces. Things look good for his feet. Arran has been tube fed one since we came home.  He is doing really well. He gets visits from a home nurse, an occupational therapist and possibly soon a physical therapist. He also has a lot of doctors appointments scheduled in the next couple of weeks. Next Monday he gets new casts and he has an appointment with his Pediatrician.  Tuesday he meets with the genetics doctor and the kidney specialist.  We will update you all again soon.

Arran met with an Occupational Therapist today.  She said that he is developmentally on the level of a newborn, not a 1 month old.  This is to be expected with his chromosomal abnormalities.  He's doing great and we couldn't be happier.

This past week Arran had several visits with his home health nurse.  She weighed him and took his measurments.  His weight is increasing or staying consistant depending on when he was weighed.  This coming week Arran gets new casts, sees his pediatrician, his genetist, and the kidney doctor.  He will also be visited by someone from "Infants and Toddlers" program.  He is adjusting well to his life here at home.  Patrick is always trying to help. Things are going rather smoothly so far.  The early morning feedings are taking a beating on us but we are surviving.

This week Arran had several visits.  On Monday he got his new casts.  His feet are doing well and progressing nicely.  He also met with his pediatrician on Monday.  He got checked out and a positive report from him as well.  Tuesday he was seen by the geneticist and the nephrologist (kidney dr.).  Both said that he looked good and that he was developing at his own rate.  The kidney dr ordered some basic blood work including an electrolite profile, a glucose level, a BUN, and a creatnin level (whatever they are).  We tried on Wed. to get blood from him but his veins kept collapsing.  So we pumped him full of fluids and went in today to try agian and had no success.  So tomorrow we are going down the road to have a dr or nurse practioner do it.  The poor little guy isn't having much luck.