Tylor had is 6 month check up at Mayo this week. We got on the road at 4:45am, Tylor stayed awake the entire ride up there. There was a little road construction and some detours but it wasn't too bad.
Ty's first appointment was at 9:30am to get some blood work drawn. By this time he is sleeping of course but all he did was flinch a little when they stuck him with the needle. I guess that is a sign he is pretty use to being poked and pinched...how sad.
Tylor's second appointment at 10am was with Lisa Epp, the dietitian. We discussed Tylor's recent growth spurt and my concern with his weight. I thought he was losing weight but he actually gained 2lbs but grew 3 inches since January. So he didn't lose weight but he didn't gain enough for the growth in height. She did say that because he is growing in height he is getting nutrition but not enough for weight gain too. So we decided to change the formula he his currently taking from Javity 1.2 to Javity 1.5. This will add 500 more calories per day. We just to need to monitor his fluid intake closely since we are not adding volume just calories fluid intake is very important. Since we are adding 500 calories with the formula oral eating will basically be for pleasure. This will be much easier on Tylor, we will not have to force food on him as a source of nutrition.
Tylor's three appointment at 1pm was with Rachel Garness, for the G-tube. Over the last couple of days Tylor seem to be irritated when I touched the G-tube so I thought maybe another infections was setting in and I also had a concern about one of the incision sites. Rachel was very happy with the G-tube site and said there is no sign of an infection. She said that sometimes when the G-tube is ready to be changed it may become irritating to the patient. She looked at the incision site I am worried about and believes that one of the stitches didn't dissolve properly and is trying to work its way out of the skin. She said they is nothing to worry about unless it would start to weep fluid of any color. After changing the G-tube we were on our way to the next appointment.
Our final appointment was with Dr. Patterson, Tylor's favorite. Dr. Patterson was very impressed with how Tylor looked. He thinks that he looks ten times better than six months ago. I told him that Ty's seizures are down and he has bowl movements are on regular basis now. I have also been really working with him to get dressed and undressed, I am in the room with him in case of a fall but he does it all by himself. I know this sounds little but it is huge a couple of months ago he need full assist to complete this tasks. Dr. Patterson said with the seizures under control and the bowls working better could have a lot to do with him doing much better. He told me to keep up the great work! This is the best appointment we have had since Ty was diagnosed.
We also talked about new therapies for NPC and trials. Unfortunately, there is nothing that I could get Tylor into right now but we will keeping researching and fighting for a cure.