July 30, 2010


Tylor at a Texas rest area at 3:55am
Our family trip this year is to Austin Texas. We left on Wednesday morning at 6am and heading for Kansas City for the night. We arrived there around 1:30, unpacked the van and sat down to relax. We mapped out the way to my sister's house and we decided continue our trip Wednesday night instead of Thursday morning. Sy's sister and brother-in-law got dinner ready for us, after dinner we rested a little bit and hit the road. We left Kansas City around 8:45pm and arrived in Austin at 9:30am. Tylor did great throughout the trip. He fell asleep right away but woke up around 1am and stayed up until we got to my sister's house. He was really tired so he slept most of the day.

Paxon and Ty playing catch

Tylor watching the deer
Friday Ty was back to normal. Sy went to visit some family in Lockhart while Ty and I stayed at Sherry's house. After lunch we all went swimming at the pool in their subdivision. Tylor had fun acting like a shark and riding the noodle like a horse (he said he was John Wayne).

Tylor picking on Rob

Saturday is going to be a big day for Ty. We have a wedding in Austin and during the day we are taking him around the capital.

July 28, 2010

Last Week at Camp....

Tylor's last week at camp was bitter sweet. He had more fun than you can image!! They started the fun with a Harley ride but you can image the line of campers waiting so Tylor went on a ride in the old time fire truck first. He had fun but he couldn't wait to get on that Harley....I have raised him well!! A friend of Sy's was there with his side car, Dan Sullivan. We thought the side car would be safer for Ty so Sy helped him in and away they went.  By the time they got back I think Ty's smile grew three times the size than when they took off.
Throughout the week they did arts and crafts where he made a photo frame, window art, friendship bracelets, and a rope with beads that spells his name (which now hangs from his wheelchair). During camp he had fun personalizing his wheelchair. They also had a fun fight, I told him he better not get any ideas for at home, played dodge ball, and had water fights. He spent a lot of time in the pool as well, he is such a little fish. And if that isn't enough he enjoyed a steel pan performance (he got to bang on the drums too), hay ride, camp fires (which of course involved s'mores), talent show, and camp dance. This year the theme was Hollywood, all the campers got to dress as their favorite movie star!! Tylor still won't tell me who he dressed as but I will keep working on it!! And of course there was a long line of girls wanting to dance with him,
some of them even put on extra lipstick and kissed him on the cheek.

Attia, Ty;s counselor for his last week
Tylor being his silly self
Well another year of camp has come and gone but believe me Ty will be ready for next year. Thanks Camp Albrecht Acres and all the counselors for a great summer.
Ty's window art

July 20, 2010

Bruisers FIGHT 4 TYLOR

The day was very humid but that wasn’t going to stop the Bruisers from winning for Tylor! Many friends came to support the cause and sell koozies, bracelets, cookbooks, and handed out information on Niemann Pick Type C (NPC). Tylor had a lot of friends and family come to support him…he loved seeing all of them. His Great Grandma, Pearl, even came!! He started to blush when he saw his friend, Gabby, from school.

Tylor go to meet another little boy with NPC, Tucker. His family made the trip from Strawberry Point, IA to support NPC!! We displayed pictures along with the story of Tylor and Tucker. I thought it was important to share both of their stories so the community can see how this disease affects both families.

Before the game Dominick gave Tylor a Bruiser jersey to wear with his favorite number on it, #4!!! My friend, Kirsten Adami, sang the National Anthem in honor of Tylor. It was so beautiful. Tylor went on the field with the Bruisers for the coin toss and was named honorary captain! Tylor watched most of the first quarter on the sideline but with the heat Tylor started to have seizures so we took him to the van to cool down and eat.

We finished watching the game by the tents so family, friends, and fans could spend time with him. The game was great and man do those guys hit hard! Tylor enjoyed the game and did pretty good but by the third quarter he was out. Sy decided to take Tylor home to get rested up for camp on Sunday.

Even though it was extremely hot the night went great. Thank you to all the volunteers, family, friends, and fans that came out to support the FIGHT 4 TYLOR and most of all the BRUISERS for honoring Tylor!!

Camp Again

Tylor was really excited to go to Albrecht Acres for the weekend because Jason was going to be there. On Friday night they had a water fight and Ty soaked his counselor with a water gun!! He was a little tired after the water fight so he rested in the sensory room, he loves this room. It is so relaxing. Afterwards they made balloon animals. Before they went to bed they had a bomb fire and ate s’mores, yum yum!!

This is the picture they sent me from that night....he was having so much fun!!

They let Tylor sleep in on Saturday because he and Jason went to bed pretty late on Friday night. Saturday was a relaxing day for Tylor, they let him watch TV. I picked him up around 2:30 so he could get rested for the Bruiser football Saturday night.

Tylor goes back to camp on Sunday for the whole week!! It will be so weird with out him around the house….

July 13, 2010

Interactive Metronome

I blogged about this when we started Tylor on Interactive Metronome. After seeing some improvements with balance and coordination, even though it is slight, I believe this is having a positive affect on Tylor. When I talked to Dr. Patterson about it he said there really is no way to tell but it certainly can't hurt him. Along with dressing himself, he is working on brush his teeth, holding the spoon and fork better, and brushing his hair. Soon we will be working on washing in the shower with little to no assistance. This is so exciting, I love to see that Ty is doing things on his own again.

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.

Camp at Albrecht Acres

Tylor had his second we of came last weekend. He loved his counselor, Khylee. They had a lot of fun together. He got to play with Mary Grace's puppy, Colby. He is so cute! Ty even joined in on a little karaoke...he gets it from his mom. Actually most of the girls were singing to Ty, especially his new friend Jamie.
In the swimming pool he showed the counselors a few tricks in baseball, with the noodle sticks and a ball. He also did some nice kicking with the board in the pool. He went fishing again and catch 4 fish!! They told me that one was pretty big. Go Tylor!! He played Wii bowling with the boys and watched Aladdin.

We are gearing up for another weekend at camp this weekend and then a full week!! Ty loves camp so much he is going to miss it when he his done.

The River Museum

Last week Ty and I met Grandma and Grandpa Mulgrew, Logan, Jackson, Landon, and Jessen at the River Museum. I know we are crazy....5 boys!!! They were all so good!! They enjoyed seeing the Octopus and playing at Water Works the best.
We went through the new part of the museum first, it is so nice. There is a ton of new stuff to look at. They even put stickers that resembles oil on the outside of the water tanks to show how the oil spill is affecting the wildlife. Tylor was a little upset because the shark wasn't there yet so we will have to go back sometime this summer. We made it through the main level of the original museum then it was time to go. Tylor needed to eat lunch and rest before therapy.

Tylor also liked listening to the Calliope before we left and looking at all the Indian artifacts.

July 5, 2010

Why a new blog?

I am sure some of you are wondering why I have started a new blog. Well I have had Tylor's website up and running for over a year and I feel like I am taking so much time to post blogs. The blog combined with his website is not user friendly so I have decided to start this new blog and link it to his website. The original blog will still be available for readers to look at and the rest of the website will remain the same.

In am hoping that this blog will take less time to maintain so I can devote that time to Tylor but still keep all of you updated.

Happy 4th of July!!

After seeing how much Jason, Ty's friend from camp, liked Tylor's Cubs blanket we decided to make him one. I know the tie blankets are easy to make but you have no idea about my lack sewing ability. So when Ty's cousin, Brittany, stopped by to visit I had her get me started. On Thursday Tylor and I took a drive to Camp Albrecht Acres to deliver the blanket to Jason. He was so excited to see Tylor and we full of smiles when we gave him the Cubs blanket.

After out trip to camp we went to the grocery store to get food for our July 3rd party. Our new house is really close to where they have the Dubuque firework display, so we decided to have family and friends over. Tylor had a great time playing catch with Grandma Jackie, hanging with his cousins, and eating lots of food!!! Unfortunately, Tylor was pretty tired from all the activity during the day he didn't make it through the firework show. But he did enjoy the air show.