Saturday, July 29, 2006

We are thanking God for another very full but good week. We have been busy, had some fun outings, embarked upon some changes, and been blessed by the Lord in many ways. On Sunday, we welcomed Uncle Timmy home from his mission trip to Argentina and enjoyed the concert that the FBD Dallas orchestra gave that evening. The kids love Uncle Timmy for lots of reasons, but one of the things Jonathan admires him for is his drumming. God has gifted Uncle Timmy with the drums and it is so much fun for me as his sister to watch him play and see how God is using him not just in the lives of my children, but in the lives of people all over the world. Wherever there are drums, it usually doesn’t take Jonathan long to make his way to them so that maybe he can sit down and play for a few minutes. I can’t wait to see how God is going to use the drums in Jonathan’s life. On Monday, our family got to go to the Palace of Wax/Ripley’s Believe It or Not museums with a group called the Starlight Foundation. When Jonathan left the OCH, we were given a form to fill out in order to get to participate in this Foundation. This group organizes free outings for families of children with disabilities so they can enjoy these events without having to worry about all the extra things that go with having a disability. This was our first event with Starlight and it was a great treat for our family. Our tour guide was a 15 year old guy named Eric who was dressed up as the Scarecrow from Wizard of Oz. He walked through the museums with us and helped us find the answers to the trivia questions they gave us to look for as we went. We had such a great time! We walked for about an hour and a half and we only sat down two times for just a couple of minutes to watch a presentation. Jonathan walked the entire time without the need to sit down any extra time. That is a definite improvement! In the Palace of Wax, we saw movie stars, presidents, talk show hosts and many other things. One of the longest exhibits that we had the option to skip but Jonathan decided he wanted to go through was the horror movie exhibit. There were some pretty creepy parts, but we all made it through with only getting completely freaked out just a couple of times. There were two big exhibits that took up most of the tour in the Palace of Wax. One was the horror exhibit and the other, surprisingly, was the life of Christ. I was so impressed by the attention they gave to the Lord Jesus. We saw him as a baby lying with his mother in the stable and his father looking on (which was absolutely beautiful), as a 12 year old in the temple, as an adult with the children, standing on the mountain giving the Sermon on the Mount, at the last supper with his disciples, on the cross with the thieves and the Centurion looking on, lying in the tomb, and finally as the resurrected Lord. It was an awesome exhibit. In Ripley’s Believe It or Not, we stood by the tallest man who was 8 feet 11 inches, saw a pictures of the Last Supper that was made out of more than 2,000 stamps, saw a painting of the Crucifixion on a grain of rice made from one human hair, walked through a tunnel that was suppose to be an earthquake, saw the aftermath of a tornado, and tried to roll our tongue in front of a mirror that we found out later was a two way mirror where everyone could see us on the other side. After we finished our tours, the kids all got to make wax hands of their hands to take home. It was probably the coolest thing they could have gotten there. Jonathan and Sarah both did the “I Love You” sign and Elizabeth did the sign language sign for an “E”. After they finished their wax hands, we got to eat hot dogs, chips and cake. Before we left, all the kids got bags of stuff to take home as well. All of the families that were there got to enjoy all of this for free. I know this cost someone a lot of money. What a blessing that there are people out there willing to donate their time and resources to provide these special kids and their families with some fun time. We are so thankful for them and will cherish the memory of our day there. While we were eating, a lady from the Dallas Morning News interviewed us. The article ran in the Wednesday edition of the paper. I found the article on line.
Foundation helps disabled youngsters 'do kid things'

Starlight Starbright includes patients' families in outings

07:00 AM CDT on Wednesday, July 26, 2006
By KATHY A. GOOLSBY / The Dallas Morning News

His words are mostly unintelligible, but that didn't stop 11-year-old Collin Stevens from communicating his pleasure Monday at the Palace of Wax in Grand Prairie.


Eleven-year-old Collin Stevens and his mother, Melissa, toured the Palace of Wax in Grand Prairie on Monday.

While his mother and brother peered into a toyshop in the fairy tale exhibit, Collin began pointing excitedly at a life-size Peter Pan perched on the shop's roof.
"He really liked that Peter Pan," said his mother, Melissa Stevens.
The Arlington boy has Sturge-Weber syndrome, a congenital disorder that affects his ability to walk and talk. Medical bills tend to drain the family's entertainment funds, so Monday's trip was a rare treat.
Six families were treated to the Great Escapes outing, hosted by the Starlight Starbright Foundation as part of its effort to bring joy to seriously ill children and their families. This year, Los Angeles-based Starlight Starbright is expanding the program into 11 metropolitan areas, including Dallas-Fort Worth and Houston.
"We're rolling out the program in cities that do not have Starlight chapters but where we have hospitals that are benefiting from the foundation," said Dana Cozby of Arlington, the Great Escapes coordinator for North Texas. "We built a children's playroom in Huguley Hospital in South Fort Worth, and we have animated Barney dolls to interact with children while they are having radiation treatment."
Starlight also has worked with Nintendo to develop a sterile game system for hospitalized children. Players insert their hands in gloves and manipulate the controls inside a box.
Several local health-care facilities benefit from the foundation's efforts: Baylor University Medical Center at Dallas, Cook Children's Medical Center, Harris Methodist Fort Worth Hospital, Medical City Children's Hospital and Parkland Memorial Hospital.
About 150 North Texas families have signed up for the Great Escapes program, Ms. Cozby said. The patients' ages range from 4 to 18. Their siblings and parents are included in the monthly outings at no cost to the families.
"It's a way for them to relax as a family and for parents to network with other parents," Ms. Cozby said.
For patients, Great Escapes offers a way to be out in public without feeling self-conscious about using a wheelchair, pulling an IV pole or being bald, Ms. Cozby said.
That was a big plus for Makenzie Goff of Arlington, who has cystic fibrosis. Her classmates wonder why she takes so many pills before a meal, but no one batted an eye as she prepared to eat a hot dog in the museum's snack bar.
"Kids at school don't understand cystic fibrosis," said Makenzie, 9. "I tell them that it's not something they can catch. You have to be born with it."
Jonathan Cooper , 10, of Lewisville slipped into a six-week coma in December 2004 two weeks after a diabetes diagnosis; then he suffered a stroke.
The road back has been difficult for everyone, said Kristi Cooper, the boy's mother. Including Jonathan's older sisters – Sarah, 12, and Elizabeth, 14 – in the outings makes them even more special.
"Starlight has been very good about including the girls in activities," Ms. Cooper said. "The group did a Valentine's Day party at the hospital, and the girls got to go around and do all the crafts, too."
Jeffrey Johnson of Rowlett, 9, was initially afraid that making a wax mold of his hand would hurt, but after one dip in the warm wax, his expression changed from concern to delight. Because of a muscular disorder, Jeffrey had to be lifted over the vat of wax by his father.
His mother and nurse watched as Jeffrey's hand was repeatedly lowered into icy water, then into the warm wax. The joy on his face said it all.
"I think he's really enjoying getting out and seeing other kids running around," Sandy Johnson said. "It's just great for him to get out and do kid things."
I’m always amazed at how poorly people retell the details of our story, but I appreciate their effort. That was our fun outing this week. The rest of the week we worked on finishing our cleaning, went swimming, and had some friends over a few times. One significant thing to share with you is that last Saturday night we started giving Jonathan Benadryl to see if that would help with his sleeping. That night he slept horrible. Not only was he up and down crying most of the night, he seemed more violent in that he would beat on things when he would get up crying. My initial thought was that the Benadryl was having the opposite effect that it should have had. Nothing else has worked so I really didn’t think this would work either. I debated whether or not to give him more on Sunday night, but decided to try it one more night. Sunday night he slept really well. We have continued to give it to him all week. He has slept pretty well every night this week. He continues to wake up a few times, but overall he has slept very well this week. As a matter of fact, as I am writing this at almost noon on Saturday, he is still sleeping! I guess only time will tell if the Benadryl is really working, or if we are just going through a “better” sleeping phase. Please continue to pray for Jonathan regarding this issue.
Thank you for your continued prayers for Jonathan and our family. Please continue to pray for Jonathan’s upcoming doctor’s appointments. Our first appointment is this week with the new optometrist, Dr. Charles Shidlofsky. Please pray specifically that he will be able to help Jonathan with his vision issues and that God will use him to bring about healing in this particular area of Jonathan’s life. Please continue to pray specifically for our appointment with the neurologist, Dr. Jeffrey McGlothlin on Aug. 17. Also, continue to pray for our weight loss journey. Jonathan continues to lose and gain and stay right around the weight we started at. Also pray for his balance. Sometimes he can walk so well and sometimes he really struggles with his balance. I have seen some of that struggle this week. Pray that we will continue to trust the Lord for all these things that we are asking of Him for Jonathan. We love each and every one of you and thank God that you so faithfully check on us and lift us up in prayer. May God bless each of you this week.

Psalm 37:3-5 Trust in the LORD, and do good; Dwell in the land and cultivate faithfulness. 4 Delight yourself in the LORD; And He will give you the desires of your heart. 5 Commit your way to the LORD, Trust also in Him, and He will do it.

1 comment:

ReformedGirlCrusader said...

Was telling a friend here about Jonathan and your amazing family. The first "eye-witness' miracle we've been blessed to see.

Am thrilled you keep up with posts and updates.

Sorry to have missed bumping into you all at Six Flags. We've been vollying between Wichita and Dallas all summer - will continue until we are good to go.

Thanks again for being diligent to post. You are a precious family and mighty for the Kingdom.