Camp Albrecht Acres Fireworks
This is the second year we have gone to the fireworks at Camp Albrecht Acres and I am telling you if you haven't been there next year you should plan to go. It is for a wonderful cause and the firework show is amazing!!
Tylor got to meet back up with his buddy Jason and see the counselors from the weekend. He was really tired but perked right up when the show started. My sister, Sherry, along with her family and my brother, Rusty, came with us. We had a wonderful time. Tate, Sherry's oldest fell a sleep half way through but Paxon, the youngest, enjoyed the show. We even got a little wet from the rain but Uncle Rusty came to the rescue...before I know it Russ had Ty almost to the building to take cover. But the rain left as fast as it came in, it was enough to get everything wet! We still had a great time with family and friends.
IT'S CAMP TIME AGAIN!!
Tylor did great his first weekend at camp! He was a little tired when he first got there, as you can see by the photo. But Ashleigh, his counselor, was able to get him up to go swimming. He played catch in the pool which he loved. He had a small seizure in the pool but he did fine. After the pool they got him out of his wheelchair for a short walk and some kickball…you all know how much Tylor like sports! Before they went to bed they watched Toy Story, one of his favorites.
Ty fell asleep right away but did wake up around midnight very upset so Ashleigh got him in his chair and took him for a short walk to calm him down. Those counselors are so good!!
Saturday was full of activities. They did arts and crafts, walked around camp to see the animals, played kickball, basketball, danced, played cards, and even went fishing. But from what I hear Tylor and his new friend Jason were laughing and having a good time more than fishing. At night they did a scavenger hunt and enjoyed watching another movie before bed.
Tylor even came home with the “Coolest Camper” award…he was so proud. Tylor was all smiles when we picked him up and I even got to meet his new bud, Jason!
Ty and his Bud Jason
What a MAN!!
Sy has been so good to Tylor and me over the last four years. He has treated Tylor like his own since he first met him. Through all the doctor appointments, phone calls, sleepless nights, seizures, med changes, colds, fevers, and everything in between Ty and I know we can always count on Sy.
We have had a lot of fun over the years too. We have been to New York, Seattle, many football and baseball games, camping, and getting ready for a trip to Austin, TX in July.
Tylor wasn’t with us on Father’s Day but that’s okay Ty and Sy (I love saying that) know how much they mean to each other. But poor Sy is still waiting for his present….Tylor didn’t have time to get to Galena to order it.
Sy we love you…Thank you for being there for Tylor!!!!
Interactive Metronome
Tylor started something new at Physical and Occupational Therapy called Interactive Metronome (IM). IM works on timing and rhythm with patients who have ADHD, Autism, Cerebral Palsy, and Parkinson, just to name a few. The patient wears a set of headphones while performing a repetitive movement trying to keep in sequence with the sounds coming from the headphones.
IM has been proven to teach patients how to focus and attend for longer periods of time, increase physical endurance and stamina, filter out internal and external distractions, control fine and gross motor skills, improve their ability to monitor mental and physical actions as they are occurring, and many other areas. To learn more visit the IM website.
His therapists decided to try it with Tylor. More often than not new things frustrate him but he actually did pretty well with this. He is getting IM twice a week during both PT and OT. We talked about whether this will work for Tylor but it certainly won’t hurt him so we decided to start it. I am hopeful that this will help improve some of Ty’s gait problems, posturing challenges, and improve some of his speech. I am not sure if any other NPC patients have tried this but if we can regain some of what Ty has lost over the last year it is worth a try.
Tracking Ty's Seizures
I wanted to let people know that if you or a loved one suffers from seizures the most important thing you can do is track them, the date and time, what was going on before, during, and after the seizure. This will help figure out possible triggers and aid in a good medication regimen. Tylor's seizures have always been hard to control. I was always very good about writing down all the seizure activity Tylor was experiencing but than I found myself more confused. In January I knew I needed to find a way to track the seizures better for his doctors. I searched the internet for different calendars or tracking sites and I found one, SeizureTracker.com. This free web based tracking system has worked very well for keeping up on the seizures. If there seems to be a spike in Tylor's seizures I use the graphing options on the site and email them to Dr. Patterson, this has enabled us to keep the seizures the lowest they have been in years.I encourage anyone suffering from a seizure disorder or if you know anyone please visit the website and start tracking today!! The below link is a video about the family that started SeizureTracker.com. Their story is very touching and inspiring!!
Tracking Evan: Caring, By The Numbers
Full Spring Ahead
Wow how the spring is flying by. I haven’t had much time to post any updates because Tylor has been a busy little guy, I shouldn’t say little…he is now taller than me, 5’-7”. So I thought it was time to belly up to my desk and give everyone an update.
Tylor has been doing great! Seizure activity has been very low and he is sleeping much better lately. We are concerned about his weight; he has been at 117 lbs for a month an a half. His oral eating has been declining so we have an appointment with the dietitian when we travel to Mayo to see Dr. Patterson.
Ty, Grandma Jackie, and I drove down to Iowa City two weeks ago to Siebert Mobility to buy Tylor’s new van! When we got there Ty met Matt the door with a huge smile. Matt was our salesperson, he is very knowledgeable and took his time going through all the van’s features with us. He made our buying experience very pleasant. After the proper paper work was done it was time to learn how to load and tie down Tylor’s wheelchair. Tylor was such a trooper, we had him in and out the van a couple of time but he didn’t care he just sat there with a big smile on his face. The whole process took about two hours then with a hand shake and a huge thank you we were on our way.
Tylor did excellent on the way home. Tylor always sleeps in the car but not this night he stayed awake the whole time. He totally kicked my butt in playing the yellow car game and finding all the farm animals. It was nice to spend time with Tylor on our first road trip with the new van.
A huge THANK YOU to Rod and Matt at Siebert Mobility!!
Now that we have the wheelchair at home every night Tylor and I have started walking. It is so relaxing for the both of us and it gets Ty out in the community. And of course everyone know Ty, kids are always waving to him and saying hi to him.
Tylor has still been going to therapy twice a week. But with changes in my insurance they want to see improvement. Of course anyone who knows anything about this disease knows that Tylor will not improve. Ty is in therapy to maintain his physical ability and to keep him strong. So in order to show the insurance company Tylor is doing well in therapy his therapists had to change some of the activities and exercises that they previously did with Tylor. I wasn’t sure how he would do with the change but he has done great.
Last weekend we traveled to Kansas City to visit Sy's sister. The whole family went down, so there were 12 kids and 11 adults staying in one house!! We had a great time, all the kids play together so well. We took all of them to Chuck E Cheese Saturday morning. Ty really enjoyed playing games, he won 70 tickets!! After Chuck E Cheese we headed back to the house to cookout. After we ate the kids did arts and crafts and we watched the Kentucky Derby. Tylor did better than I thought he would with the noise and all the people. He was laughing and smiling all weekend!!
Tylor had a lot going on this past week. He had a field trip to the Mines of Spain; where he went to the Julien Dubuque Monument, which over looks the Mississippi River and the city of Dubuque, and then he went fishing. Tylor’s fishing partner, Jason, helped him cast. Tylor caught two fish, the first came off the hook right as Ty was pulling it out the water but the second he got. He was so happy and of course I was cheering for him so I am sure I scared some of the fish away.
Tylor also had a Special Olympics bowling fun day at Bowling and Beyond. Ty’s new wheelchair is not easy to break down and put it in the back of a vehicle so Mrs. Clemen, Ty’s teacher, asked if they could use the old wheelchair for the day. I didn’t have to work on Friday so I told her that I could take him down, hang with him while he was bowling and take him back to school when they were down. I was so happy that I went. Tylor had all the girls down with him, the other boys were jealous. Gabby was his bowling partner and Sam and Jennifer bowled in the lane next to him. They had a ball!
I have a meeting with the owner of the Dubuque Bruisers, semi-pro football team, on Monday night. He found out about Ty through a good friend and he would like to have him at one of the home games. He will donate some of the proceeds from gate admission to Ty, at half time they will have him come onto the field while they say a little about Tylor and NPC, and Ty will get to be on the sidelines with the players. I will keep everyone posted on this wonderful opportunity to spread the word about NPC and for Ty to do his favorite thing, hang with football players!
So as you can see we have been very busy and the summer doesn’t look like it will be any different. The calendar is filling up so it may be hard to post blogs and update the website as much as I would like but I will do my best.
To see pictures from the last couple weeks go to Pix of Ty Bug page.
Tylor wins BIG
Tylor had a bit of a rough week…but that wouldn’t stop him from have a great time at Special Olympics Challenge day! Since Ty is with Sy and I everyday I thought he would enjoy having his best friend Sam (a.k.a his girlfriend) help throughout the day. They had so much fun together!! Tylor was a little sleepy in the morning (we had friends over for dinner the night before and they wore him out). He fell asleep during ramp bowling but he still managed to make enough strikes to win first place!!
The day was filled with activities like dice bowling, dart games, arts and crafts, team volleyball and basketball. Tylor took third in ball darts, forth in dice bowling, and sixth in team basketball and ball darts. He did a great job!!
Tylor enjoyed lunch with Sam, Kara (his respite worker) and Cody, the athlete Kara was helping. Kara taught Ty to dip his animal crackers in pudding and he loved it.
By the time the day was done we were all tired. Tylor even fell asleep waiting for the ribbon ceremony to start. He perked right up when he heard his name announced for his first ribbon and after that there was no time to sleep he wanted to find out if he won more!! During the ribbon ceremony Sam asked Tylor what is favorite part of the day was and he said “me and you”, it was so cute!! Sam really helped to make the day special, Thank You Sam!!
To see more pictures from the days events see Pix of Ty Bug page
A month of home improvments and additions
A The last couple of weeks we have been busy remodeling the bathroom to fit Ty’s needs better. We started by taking out the vanity, the pretty pink toilet and tearing down the pink tiles to get the tub out. The demolition went really well, but it was really messy. Then it was time to run new plumbing, which was a little time consuming because Grandpa Mulgrew put two shower heads in; one on the end and one on the side for Tylor. After the plumbing was done it was time to set the shower base and lay the tile. 
Boy does it look different, especially with the new paint (thank you Eric), and it will be much easier to give Ty a shower. 
After the bathroom more home improvement were needed. So we started on the ramp. I am sure Tylor would love to do wheelies in his new wheelchair but I don’t think that is recommended. So Grandpa Mulgrew, Sy, and Ray came to the rescue again. It is so nice not just for the wheelchair but even for Tylor walking into the house…another home improvement checked off our list!!!
Now onto finding a van for Tylor! It took a few weeks but we found the perfect van to fit Ty’s needs. Ray went with me to check everything out and take it for a test drive. It is a nice ride and it will be easier to transport Ty. I am not sure about driving a mini van but I have to do what I have to do. Now all I need to do is find some soccer ball stickers!!
Shortly after the bathroom was finished Tylor’s bath chair arrived. It was a fight with the insurance company but we got it and it works great. Tylor doesn’t get so upset and is more relaxed during bath time. Plus it is a lot safer.
Thank you to all who helped especially Grandpa Mulgrew, Ray, and Sy….oh and Tylor for providing the entertainment.
Jenn
Candle Walk
Tylor and I participated in the Emmaus candle walk on Saturday night. Emmaus is a non denomination spiritual weekend. I attend my first Emmaus weekend in 2008 and Sy (Ty’s stepdad) attended this weekend for the first time. The Emmaus community has been very supportive. There are always prayer warriors praying for Tylor!! They were all so happy to see him tonight and Ty had so much fun!!
New Wheels!!!
After going around and around with the insurance company for four months Tylor finally got his wheelchair!! It is amazing…it makes Tylor sit up so straight. This will help prevent back and breathing problems in the future. He is still getting use to it, this wheelchair is more confining than what he is use to. He used it a lot this weekend so on Monday at school he is more comfortable using it.
It is difficult to for all of us to adjust to all the changes that Ty is encountering but this will help keep him more comfortable as this disease progresses. The next stage will be to find a van that will haul a wheelchair. The physical therapist wants Ty to be transported by wheelchair for safety purposes and it will make it easier for me…that wheelchair is a tank. The hunt is on!!
