I wanted to keep you guys updated on how we are doing...
Alex is doing great. We met with Dr. Benzick (our beloved pediatrician) on Monday and he is really pleased with how Alex looks and his development. Alex has gained 1.5 lbs since having the tube placed. So far he hasn't gotten any taller, but hopefully that will come. Dr. Benzick applauded us on how "normal" Alex is with all that he has been through. He is impressed with his development. As we have known Alex's intelligence and verbal skills are above what they should be at this age. We briefly discussed having Alex's IQ checked in about a year. Dr. Benzick felt this would be beneficial as we progress with schooling.
Alex's belly is healing really well. He is climbing and lying on his belly. He has virtually no pain, but he still hates for me to clean around the tube. We are now taking baths (thank goodness) and eating small "meals". (Dr. Putnam only wants about 200 calories a day to come from food so he is having some banana or blueberries in the morning and a small portion of beans and carrots at night.) We have been to playgroup and out to several activities. Alex has shown his friends his tube and they have decided they like Alex's new way to eat. Life is pretty much back to normal around here.
The only problem we are seeing right now is Alex's reflux. We knew going into the surgery that there was the potential for Alex's reflux to get worse from all the liquid of the formula diet. I hear Alex gagging and coughing quite a bit, but he is not in pain which means the meds are doing there job. We are trying to determine whether to proceed to several feedings a day as planned or to stick with the continuous drip. We do not want to aggravate the reflux any further.
We had hoped that by this point some of the peripheral symptoms we see would be increasing. Unfortunately, Alex's energy levels and heat tolerance have not improved. We are hoping it just has not been enough time yet. If not, the next step is for Dr. Putnam to perform a muscle biopsy at one of our subsequent trips.
The only other new thing is that Alex and I will start homeschooling some time in the next few weeks. As most of you know, Alex has a compromised immune system so the Dr's have advised not putting him in a school environment at this point. I have ordered a home school curriculum that we will work on for the next 2 years and then make a decision with the Dr's as we approach kindergarten. We are letting Alex participate in Sunday school and he is very excited to start this morning!
We are so grateful for all th support you have given us over the last months.
We love you,
Ali and Bruce