A Much Needed Update

Tylor had his yearly check up at Mayo in February.  Dr. Patterson is still very happy with his condition.  His spine is still looking good, his horizontal gaze is getting a bit slower and of course his vertical gaze is very slow like before.  He seems to be having more tremor issues than in the past but nothing to serious right now anyway.  The seizures are still an issue but we are thinking that is do to some changes in his environment.  So I am keeping a close eye on them and we will discuss at a later date if we need to adjust his medication.  He was pretty sleepy during the exam but the doctor was happy with out Ty responded to the test he preformed.

His G-tube was also changed on our visit.  She was very pleased with how good the site looks.  No infection or granulation tissue to report.  He is such a trooper when he gets it changed.  With his growth (now 6'-0") the track is in a upward position so it is a bit uncomfortable to have changed.  In time it may need to be repositioned.  Meaning another surgery.

As far as his diet they are concerned that his weight is still the same as it was a year ago.  So we increased his calorie count.  He takes one can of the old formula and one can of a new formula with more calories twice a day.  We don't want him to get to big for the simple reason that I still have to get him around but we also want to ensue that he is getting the amount of calories and nutrition his growing body needs.

Tylor also had reevaluation for PT, OT, and speech therapy.  They will be working on respiratory therapy, endurance, fine motor, and the Dynavox (his communication device).  I was given stretches to do at home and he needs to ride his bike more. Tonight he did pretty good with the stretches and as always loves riding his bike.

July 14th-Mayo check up

Tylor's last check up was very uneventful, but we like them that way!

Lisa said his height and weight are good. He weighs 123lbs and is a whopping 5'-11"! His tube feedings are going well and he continues to eat orally. After a little more discussion about his eating habits she suggested we keep everything the same unless something were to change.

The G-tube specialist looked at the site before changing the tube, she commented on how good the site looks. There is no skin break down, no scar tissue, and no leakage. The tract has moved due to Tylor's growth but she didn't have any concerns to warrant a GI investigation. So she changed the tube and sent us on our way.

Dr. Patterson continues to be impressed that Ty is remaining stable. His seizures are under control, he is down to about 15 per month were before he would have anywhere from 35 to 45 per month. He was very alert during the exam....smiling and laughing when appropriate. The doctor contributed Ty's stability to the care we provide and the reduced seizure activity. So unless something changes we will see them again in six months.

Two Thumbs up for Ty

Tylor waiting for his last appointment

Tylor recently had his six month check up at Mayo Clinic.  We went up the night before so Ty could get a good night sleep and not have to get up real early in the morning.

We saw Lisa Epp, the dietitian, first. She was very happy with his weight!  He is maintaining a healthy weight but oral eating is becoming harder so she suggested we just feed him what he likes to eat. It doesn't have to a well balanced meal all the time since he gets all his nutrients through he G-tube. I told Ty hey how many people get the permission to be a junk food junking from their dietitian? Our main goal is to keep him eating orally as long as possible so the food we feed him needs to be something easy for him to eat...like Mac N Cheese, PBnJ, soups, spaghetti o's.

Next we saw Dr. Patterson. He again was please with how is doing. His progression is very slow...he is actually pretty sable right now. I think this is great considering the onset of symptoms started eight years ago.  We talked about starting Ty on Cyclodextrin.  Dr. Patterson explained that it would be given on an uncontrolled basis and that we don't know if it will help or hurt him. He also told us to look at the big picture...Ty's quality of life! Tylor is very happy, he loves to go to school and has tons of friends. Giving him the Cyclodextirn could possibly change this. After some more conversation we decided not to pursue getting Tylor on Cyclodextrin at this time. Dr. Patterson told us to keep doing what we are doing....Loving him and keeping him health. We can do that!!! 

Lastly Tylor got his G-tube changed. Penny said that the sight looked good just a little redness from the old tube being a little tight. She gave us some pointers on how to replace the tube with little to no pressure on Ty's belly. Then we were on our way!

Another 6 months have gone by...

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.