Therapy updates

Therapy has been going well even with the few weeks he missed because of camp and vacation. They have been working on climbing stairs and lots of balance activities in physical therapy. In occupational therapy they are working on wash handings, wiping nose, brushing teeth, getting a shirt on, breathing exercises, and more.

New PT activity

He is getting around much better but there is a new issue with safety while he is walking. The physical therapist and I talked about fitting Ty for a AFO brace. This will help to strengthen his left ankle which is getting very weak.  I will be ordering new shoes for him this week and he will be fitted next Tuesday for the brace. I am a little worried about how Tylor will adjust to his new equipment but he has done great so far with all the changes I am sure that this time won't be any different.

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.

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.

1st ANNUAL RYDE 4 TYLOR

Tylor with his buddy Brad (a.k.a. Fat Head)

This past Saturday was the 1st Annual Ryde 4 Tylor! We had 60 bikes sign up for the ride so with the riders, their passengers and people in cars we had around 150 people participate. We were hoping for 50 bikes so I was very pleased with the turn out!!

If anyone is interested in t-shirts or koozies email me
at Rjenw97@aol.com

Tylor was really excited because he got to be the leader of the pack in an orange Semi that his Dad drove!! This was the talk of the day, all the riders thought this was so neat. The whole group followed him all the way to the first stop. It was so emotional to see the semi will all the bikes following and knowing they are riding for your son. After the first stop Ty was pretty tired so he left with his Dad as we continued the rest of the ride.

There he goes

We sold cookbooks, koozies, t-shirts and bracelets at each stop along with selling some 50/50s. One of the bars donated 5% of the bartenders tips to Tylor and another donated the money they raised from selling shots!!

This is so cool...

Giving everyone a thumbs up

Tylor with Amy and Curt, the owners of Knicker's

Making smoke for Ty

We want to thank all the volunteers, participating bars (especially Knicker's), riders (whether on a bike or in a car), and all the people we met along the ride. We all had a great time. See you next year for the 2nd Annual Ryde 4 Tylor!!!

Tylor says ROCK OUT everyone

On the way home

RAGBRAI 2010

Well the Ride4Tylor RAGBRAI team made it! They had a great time and got to meet a lot of great people along the way. The team left Saturday, July 24th for Sioux City so they were ready to dunk their rear tires on Sunday morning and start the trek across Iowa.

Janelle's nails sure drew some attention to the reason they were all riding for...way to go Janelle!! They had people asking throughout the week about NPC and tell them to let us know they would be praying for Tylor. I believe in the power of prayer and it touches us that complete strangers care so much.

Janelle riding in the rain on July 30th

Clay riding in the rain

HOLY COW!!

A billboard coming into Dubuque, IA

Thank you again Janelle and the rest of the Ride4Tylor team!!

Dinner with great people!!

Tylor had a very special night. Some of the camp staff from Albrecht Acres came over for dinner. This was Tylor second year at camp and this group of counselors will hold a special place in our hearts. They are so good to Ty and love him so much. It hurts to say good bye to them but we wish them the best in all they do! We know they will make a difference in many lives and we are greatful they have been apart of Ty's!!

everyone chillin' on Ty's bed!!

Ty with all the girls

Thank You to the 2010 staff at Camp Albrect Acres!! You are truely the best...we will miss you!

HOOK'EM HORNS COUNTRY

Saturday morning before the wedding we took Ty to the capitol. It was so beautiful. We walked around the grounds to the visitor center where Ty got to listen to the history of Texas on an old time telephone. He also got to buy some souvenirs. Then it was onto the capitol building...Tylor had the best seat in the house to look up at the Texas star. I was jealous, because when you are on your feet and looking up it makes you dizzy. It was neat to see all the pictures of the past Governors of Texas on the walls of each floor. After the going through the building we toured the grounds a little more and then headed for the hotel to rest.

Tylor on the old time telephone

This is what Ty is looking at in the above picture

After our nap it was wedding time!! Tylor looked so handsome in his plaid shorts and polo shirt (who am I kidding he always looks handsome). The wedding was beautiful and Ty stayed awake the whole time because he had his eye on the bride, Kristen. After dinner Ty and I went back to the hotel to get some rest because the rest of our trip was going to be very busy.

Tylor looking good at the wedding

Sunday we toured the University of Texas campus and bought our hook'em horns attire.

UT Campus

UT football stadium

Then it was off to Lockhart to Sy's aunt and uncle's house. They have a beautiful backyard with a pool, we spent most of our time there on Sunday and Monday. We even got to see some lizards around the pool. Tuesday we relaxed in the house, it was 101 degrees out!!

Ty after a day of swimming

Wednesday we headed to San Antonio. We went to the river walk and took a boat tour. After the boat tour we ate at a Mexican restaurant where Tylor was serenaded. He thought the one girl was very pretty!! Next was the Alamo. We got to see lots of old guns and knives and even the room where the women and children went during the battle. Tylor got so see the little room they used as their hospital and be both agreed it didn't look very comfortable. Even though we were all tired and hot we had one more stop to make...Cowboys training camp!!! I am a Cowboys fan so I was tickled to go see them, Tylor on the other hand fell asleep. From San Antonio we headed back to Austin. We were scheduled to leave Thursday night so we wanted to get packed and organized because we had more plans for Thursday morning. And before we went to bed we found a scorpion in Sherry's house...yikes!

The river walk

Cillin' on the boat ride

 

Ty liked the one in the middle

Gotta love Texas!!

Thursday we drove around Lake Travis, wow is it beautiful! The water is so blue and the houses were huge. We wanted to go to the flea market but because it was during the week there were not a lot of vendor so we decided to skip it. We grabbed lunch and went to Sherry's to rest before our drive. We left Austin at 7pm and made it to Kansas City by 6:40am, we made great time and Tylor stayed awake most of the time. We stay in Kansas City until 10am and then we were back on the road. We finally arrived in Dubuque at 5:30pm.

Tylor had a great trip. Even with all the activity and heat Ty's seizure remained very low!!! Now that we are back home he is back on schedule and doing great. Physical therapy was a little hard yesterday but after missing three weeks in a row what can we expect.