Wow...It's been a long time......

Well where do I start??  It has been a very long time since I have posted a blog for Ty and we have a lot to share.

Tylor has been doing so well.  He is doing great in school.  He has more interactive with his peers this year.  He participates more in class and stays awake more then ever during the day.  He does like to watch the girls at lunch which complicates eating but at least he's enjoying himself...right??  When I put him on the bus and take him off he always has a smile on his face, which makes it much easier to send him to school.

It was a very special Homecoming for Tylor. He was asked by his "girlfriend" Elena and of course I made it happen.  His Uncle Mitch was nice enough to let him borrow some clothes that looked very handsome on him.  He and Elena had a wonderful time with each other and they were both happy to see most of their friends there.  It was so cute to see them holding hands most of the night.

Tylor and Mom at Homecoming.

Elena and Tylor's first picture of the night

What a cute couple!!!

 

Time to say Goodnight!!

 Ty also celebrated his 16th birthday!!!  We went out to eat at a local Mexican restaurant with some friends.  He loves to eat there.. or it might be that his Mama loves their Margaritas.  But at any rate we had a great time and Ty was full of smile the whole time and loves his Birthday dessert.

 A few more updates Ty is still not going to PT or OT because he is going so well.  His new AFO's are working out great and his strength is awesome!!  We have been very blessed with Ty's condition and how slow it has been progressing.  He is such a happy and loving kid...I couldn't ask for anything more in our situation.

I hope you all enjoy the pictures and I am hoping to post more often now that things have settled down a bit in our lives.

Where did the time go?

Hello Everyone,

I haven't posted an update on Tylor in a while and I finally found some time to get on the computer to do it. Well it has been busy around here for starters I started a new job at Edwards Cast Stone Company as a part time Drafter so we have been trying to get things down around the house. Tylor had his Special Olympics Bowling tournament a few weeks ago, he got third place. His first game he got three strikes in a row....and there were no bumpers up! I can't even do that with the bumper up! He starts practicing for his Special Olympics swim meet on Monday at school. Every Monday they get to spend an hour in the pool, lucky guy! School has been going well. He loves to make people laugh and hang with his friends. He has a new friend, Brandon. Brandon is in the Life Skills program with Tylor and he loves to help Tylor. I picked Tylor up the other day for therapy and as I was loading Tylor Brandon yelled wait and he kissed his head! Tylor keeps touching the lives of others where every he goes.  He is also working on using the DynaVox during school to help communicate with the teachers and his classmates. The DynaVox is a communication device that is setup to Tylor's needs.

We also have been working closely with Notre Dame and have been sharing Tylor's medical records, pictures, and videos. They are working on rare and neglected diseases and NPC is at the top of the list! After reading through all the records they will compile all the information into a 2 to 3 page medical summary. They are also working on putting together a website for doctors who are struggling with diagnosing a patient. We have been in touch on a weekly basis and through email. They are almost done with Tylor's summary.

Tylor, Jill, and I will be traveling to NIH December 4th through December 9th. Tylor will be part of a Clinical Investigation. This is not to provide treatment for NPC but rather to evaluate a series of clinical and laboratory tests that might be useful in a subsequent study to determine if an investigational drug is effective in slowing the progression of NPC. Unfortunately for Tylor he will have all prior tests done again. Here are some of the tests that will be done; Blood draws, urine collections, lumbar puncture, MRI, psychological testing, hearing evaluation, skin biopsy, and genetic analysis are some of them. He will be sedated for the MRI, lumbar puncture and the skin biopsy so he won't be in pain. He just gets really sick after sedation. We are looking forward to this trip and hope that some how Tylor's results can help aid in the research effects at NIH. We will be posting update throughout that week.

So as you have read we are busy around this house and it is only to get crazier with the Holidays quickly approaching.

A Blast from the Past

Tylor's old para from Jefferson dropped off some pictures of Tylor and I have to share some of them. He looks so young! It's hard to believe my little boy is now a young man.

This is Joyce, the para who gave us the pictures

Sam, Tylor and Gabby then

Gabby, Tylor and Sam now.

What has Ty been up to??

You all are probably wondering what Ty has been doing lately. I know I haven't posted much in the past couple of weeks. Tylor is doing pretty good...his seizures have increased over the last month so Dr. Patterson decided to increase some of his meds so we are watching the seizure activity very close. We need to make sure there are no side effects with the increase and that the seizures get better.

Other than that Ty is doing great. He had a lot of fun Halloween handing out the candy at our house. We got to see a lot of really cute customs. We have also enjoyed our soup Sundays! Every Sunday we make a different soup from his cookbook and watch football!! Go Packers, Cowboys, and Vikings...our house is very interesting on Sunday and Monday. Tylor is having the best season out of all of us and he lets us know it. He had a big grin on his face Monday when I told him the Packers beat the Cowboys.

Tylor is still going to PT and OT twice a week and is getting around quite well with his walker. He is loving every minute of school. When we gets home I always ask if he missed me and the answer is always the same "No". That's okay hanging with friends is much more fun than with your mom, right?

We hope all is well with you and your families!! Take care.

First Day of 8th Grade

Today Tylor got to see all his friends that he missed over the summer, so he was very happy about the first day of school. He did keep in touch with many of them through email and phone calls but it is much more fun to see them in person. Tylor did great getting himself ready with just a ittle assistance from me, he was so proud of himself. After I got him loaded in the van he fell asleep and I tried to wake him up but no success until he heard his friend's voices.

Tylor's new para

I got to pick Ty up today becasue he had PT. He was of course full of smiles when I pulled up. His para told me that he had a great first day. He only had one small seizure and was upset only a few times! What a great way to start off the year.