Caden continues to do well. He continues to gain weight. He weighed 7 lbs 14 oz on Friday when the home nurse came by to see him. That is up another 7 onces in just over a week. Caden does continue to have severe reflux episodes that we have talked to his pediatrician about. The pediatrician does not think the reflux is due to what Caden is being fed, but rather how much and how fast. We have eased off of the daytime rate and volume that Caden is getting and it seems to be helping a little. The pediatrician also adjusted Caden’s stomach medicines last week to see if that will help things too. Caden was still on the same dose that was being given when he was 6 lbs. Now that he is almost 30% heavier the pediatrician felt that he needed to have an adjustment. We are comfortable with the pediatrician’s approach. We have stabilized Caden’s food at a 50/50 ratio of Mom’s milk to formula. We don’t plan on changing the mixture again until we get the rate and volume where it needs to be for his weight and age.
Riley and I took our first trip out of town since October this weekend. We went to see Papa on Sunday. Papa is Riley and Caden’s Great grandfather. Papa is in a nursing home in Clinton, SC about 160 miles away. We had not seen him since before Caden was born. For those who do not know, Papa’s doctors called the family in just a few weeks before Caden was born. They thought he would not make it through that weekend back in October. Riley and I visited with him, my mom, my sister and my nephew for the afternoon yesterday. The visit was long over due. We miss Papa a bunch. Papa was not having the best weekend, but he was still doing good enough to get out of his room in a rolling chair for a while yesterday.
Sherry stayed home with Caden. Caden seems to be more prone to have reflux when in motion. We tried taking Caden to church Saturday night to see if he might be up for the Sunday trip to see Papa. Caden had a pretty nasty reflux spell while at church and that raised enough concern for Sherry and I to agree that he needed to stay home. We hope he is able to travel soon because we want him to met Papa.
I found a chat group on Yahoo this weekend that is just for families affected by DiGeorge Syndrome. I have joined the group and already found that we are not alone in our struggles with Caden’s condition related to DiGeorge. We have several friends with children that have special situations with a child, but none with the extreme feeding problems. I am hoping to possibly get some tips from other parents as well as share some if we can.
Well, it is time to get ready for work. I just changed Caden and he is back to sleeping sound already. I have never held a child that enjoyed being held as much as Caden. It is hard to put him down sometimes. Thanks for checking on us. May God Bless You All.