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.

Mama called the Doctor and the Doctor said....

Over the past couple of weeks Ty has not been himself. He seems to very out of it and moody. I wanted to give it some time after he last med increase but I saw no change. With the Holidays right around the corner I wanted to make sure there wasn't something going that he couldn't tell me about. On Tuesday we went to Dubuque Peds to see Dr. Kragenbrink. He checked his nose, ears, and throat which all check out good. But with Ty's inability to take deep breaths for the doctor to listen to his lungs he thought it would be best to get a chest x-ray and also check for a urinary tract infection. Again both checked out fine. So the next thing he wanted to do is run a blood panel on him to check med levels and liver function. The med levels and liver were fine but his blood sugar is high so he wants to do another blood test on Saturday morning with Ty fasting.

I am a little worried because diabetes runs in my family. I am sure it is nothing but we could use some prayers our way for our little man!!

God Bless

Can you hear me know??

Most of you know Tylor will lose his ability to walk, talk, eat, and breath on his own. So it is very important to get Tylor's hearing and vision checked on a yearly basis. Because of Ty's low communication ability he we wouldn't be able to tell if his hearing or vision was going bad. This past week it was time for his hearing test and he passed with flying colors. Jenny, who does the testint, is so good with him. I was a little worried half way through the test because he stopped telling her when he heard the beep so she had him repeat words back to her. She said that he could repeat her perfectly after hearing the word in a faint whisper, which means you have to have great hearing to hear that low. So we figured he was just getting bored with the first test and stopped responding. After the hearing test we went upstairs to see Dr. White. He checked his ears, nose and throat and was pleased with how everything looked. So unless something changes we will see him in a year.

Ty finishing his test

AFO casting

Last Friday Ty got casted for his AFOs. I wasn't for sure how it was all done so I told Ty if he was good and did what Pat told him to do we would be in and out of there. He was pretty tired because they had spirit day at school so he was outside most of the day! After the paperwork was done we headed into the casting room. 

Tylor waiting for Pat

Casting supplies

First he put a sock on Tylor that he marked where the brace need to start and where his ankle bone is and other bones in his foot. Then they use two packages of cast material, they dip it in water and start to wrap the leg from where the brace starts and work their way down. Under the casting they place a long tube to cut along after the cast is set. This way when they remove it they won't cut the patient. After they get all the casting on they rub over the outside and make sure the foot stays flat. It only takes about 3 minutes for the cast to form then it is time to cut it off. Tylor didn't mind the cutting of the cast but he hated when he cut the sock with a scissors. He kept saying ooch and wrinkling his face. I didn't hurt but I think the thought of a scissors cutting along your leg bothered him. 



Pat marking Ty's casting sock

Starting the first cast, see the long tube

First cast done, way to go Ty Bug

There it is...I told Pat we need to use these for Halloween!!

Working on the second cast

See what I am talking about, look at Ty's face!



Who needs doctors...moms should get their pay!!!!

Sunday morning I was awakened by a call from Ty's dad about some trouble with his G-tube. So I gave him an idea of how to unclog it and to let me know if he still was having problems. About 15 minutes later he called back that he was still having problems getting anything through the tube. So Sy and I ran over there real quick to take the Mic-key button out to clean it. Well little did I know it wasn't going to be that easy. I have taken the Mic-key out several times and have never had a problem but on this particular morning I could not get it back in. After several failed attempts I decided to take him to the emergency room in Galena. Tylor has never been to Galena so I had some paperwork to fill out while Sy and Ryan took Ty back to the room. After the paperwork was complete the receptionist lead me back to where Ty was. Unfortunately the doctor was also having a problem with the Mic-key button. After three or four attempts she put in a smaller catheter like tube (much longer than the Mic-key button). She wanted to leave this one in which would help keep the track open but the track would slowly close around the smaller tube. This would be much more painful for Tylor when we had the GI doctor put the correct size tube in because they would have to dilate the track back to the normal size.

We decided to let Ty take a little rest before trying again. He was doing well but the doctor was putting a lot of pressure on the belly trying to get the tube in. Again she was unsuccessful so suggested that we wait for the doctor that was on in 10 minutes so he could try. Well after she discussed the situation with him he declined to help, say that if she couldn't get it in he wouldn't be able to. What?? I couldn't believe what I was hearing. So the first doctor said the best thing to do was leave the long tube in and have Ty seen by the GI doctor on Monday. The nurse asked if we wanted to try one more time and I said yes but the doctor didn't move towards Tylor like she wanted to so I said let me try it one last time. All the doctor could do was say all you are doing is irritating him. I did agree that it was uncomfortable for Tylor but he was not in unbearable pain so I tried one last time and I finally got it!!

I was a little upset with how everything was handled. I was just very confused with the doctor's decisions and actions. So than I thought maybe I shouldn't have been so persistent and maybe I really did hurt him. So Monday morning I called Rachael Garness at Mayo Clinic. She explained to me that with Ty's growth the track will move and there might be more scar tissue and that this situation was very common. She reassured me that I made the right decision to keep trying. She did say that if the difficultly with replacing the Mic-key button contiunes we will take some pictures of his belly to find out exactly where the track it now.

Tylor fell asleep while waiting for the next try

So I guess we will see when October comes around and it is time to replace it.

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.