Appreciation

Our appreciation goes out to the many who keep apprised of our family through this blog. I know that many of you are reading and watching to stay informed. Many of you have watched the video clip that Ryan composed of family pictures and events. As a result, you have gained a small glimpse into our world. We have stayed relatively secluded in hopes of preventing any unnecessary exposure to illness for Rebecca. As a result of this and of the overwhelming responsibilities in a typical day, we have not stayed as close to many of our dear friends as we would have liked. For those of you whom we have failed to keep in touch with, our apologies to you.

I know that Ryan has shared with you information in reference to Rebecca's seizures. It is difficult to understand how someone so little can be so strong. The seizures come in all different forms. The worst is the one that he described where her head whips so strong that she could have concussions. These can occur up to more than one per minute. This is horrible to watch her experience as she always concludes them with her bottom lip sticking out and looking terribly scared and pathetic. The others range from her eyes jumping to her eyes staring off. She also just has minor jerks to the head. Most people who watch would not know what to make of them if they notice at all. And it is always entertaining to see people's reactions to her as they do not know what to make of her. We are grateful that she does have content moments, especially when she is rolled up in a fetal like position. We often wonder how long she can go on, but she proves to us that she is purely of God and has a strength that can only come from Him. I am certain that the Lord has a greater purpose in mind for Rebecca and am grateful that she belongs to Him. We appreciate all your prayers that God's will may be realized in her. For those who continue to pray, please send a thank you for the blessed doctors who are closest to her who have helped us advocate our wishes for her, even when they go against medical mainstream thought.

For Katherine and Elizabeth, the busy life of school-aged children is here. They are both enjoying their dance class. They are currently enjoying their freedom and comfort with a studio and staff so familiar with them. Thank you to the staff for letting them know how special they are on a regular basis. Elizabeth will begin to venture into the run and reading club at school with her big sister and others "in charge" of her and other Kindergartners. That should be interesting. Elizabeth also had her first soccer game on Saturday. We were very proud of her and how she played. We are also grateful for an enthusiastic and praising coach. It is not often that you come across one that remembers all their names after 1 practice, lets them all play, and praises each by name several times. Lastly, Katherine's piano skills improve every week. It is amazing to think of the progress that she has been able to make with a teacher who is ever patient and kind. I am grateful to all these persons who encourage my children and teach them how to work through frustration to the enjoyment of success.

Ryan, Katherine, Elizabeth, and myself were fortunate enough to have a mini-break to New Orleans while Rebecca was spoiled and loved by Ms. Cathy at home. While daddy worked, the girls and I enjoyed Cafe DuMonde, Jackson Square, the Aquarium, the Insectarium, a rooftop pool, and the Audubon Zoo. Best of all, we all got to play with our honorary family Aunt Denise, Uncle Kyle, Clare, and anticipated baby. It was a wonderful, fun-filled trip. However, I know it would never have been as huge of a success without our dear friends. Hotel rooms and children were not made for one another. I will post pics later that will speak for themselves and be sure to ask the girls about their adventures next time you see them.

Heads up for kids in grades 3-5. It is Pine Cove time again for church camp (First Bossier). I am very excited that Cathy is with us and is willing to stay with Rebecca. That's right - look out - I'm coming along this time! I hope all of you will consider coming and enjoying this with friends in Christ.

Rebecca

Rebecca is having a seizure that causes her head to jerk side to side. It is painful for her.

Please continue to pray for her.

Update and Request

Rebecca is about the same. She is having seizures, but she is able to rest when she is medicated. We have to make a decision on a medicine change.

Please go to http://www.youtube.com/watch?v=vvDsIs0aeYI for our video prayer request.

We have to give her a medicine that will cause her to be relaxed all the time and we most likely will lose any small steps that we have gained in strength, but it will help her muscle tone by making it less rigid. This is hard for us as parents to decide. She has no control over her muscles and basically is a quadriplegic, however, she is not paralyzed. This means that although she has no control over her muscles, she feels them. It hard to imagine this state, but once you wrap your mind around it its only more painful. We are meeting with the pediatric neurologist tomorrow and we will discuss treatment plans. Please pray for us.

Our OT has suggested several appliances to help Rebecca. Her little legs are starting to remain rigid and crossed at the calves. This makes it very hard to change her diaper, but I am not sure if pain causes the rigidity or if pain is caused when you try to relieve the stiffness. So hopefully a specially designed chair and wheel chair will help her. She has no control over her muscles, so we will have to basically strap her in the chair at various points of her body, starting with her head and ending with her feet. Her mouth will need a bite guard because she has a new kind of seizure that causes her to bite down and grind her teeth together. She only has four. Her feet, we are told, will need removable casts that will have to be monitored for blisters and sores. Please pray for her during this time.

This has been a tough week. Elizabeth started kindergarten this week and she impressed her teacher by doing math problems in her head and saying her alphabet backwards. She is dressed and waiting for the big girl bus before day break. This is going to be a fun year for her.

Katherine is restarting piano lessons and wants to learn how to play the guitar. She is enjoying being a big sister to Elizabeth at school.


Thanks

Back to the Hospital

Rebecca was having some trouble with the feeding tube, so we were back in the hospital for a few days. She was released on Friday August 1st.



She is at home and getting used to her feeding tube.



Katherine and Elizabeth have some new puppies. Brownie and Spot have been a great diversion and they are great pets.



Thanks for all of your prayers.



Also, my nephew JR is having a birthday party at the Skating Rink in Bossier Wednesday Night at 6:00 pm. Everyone is invited to skate and have pizza for free. Don't bring a present, just bring some used sports equipment. He is going to donate it to a local charity. Not to bad for a first grader.

Finally Home

We are home a few days early. Rebecca is healing and she is glad to be home. Thanks for all the prayers and kind words.

Happy Anniversary

Rebecca is having a better day. Her veins are weak and she has had to have her IV replaced several times. She is tolerating feedings well, which is a blessing. The doctors will keep her in ICU for a few more days to make sure she heals properly and comes off the pain medicine appropriately. Please continue to pray for her healing.

By the way, today is our 12th Anniversary. I just want to thank Susan for being such an incredible Christian, wife, friend and mother. She is a true woman of God. She refuses to leave the hospital, so we will be having a romantic anniversary dinner at the Hospital once again. (Last year we were at Dallas Children's.)

Thanks for all the prayers and kind words. You all will never know how much your prayers support and encourage us at this difficult time. I have been honored to share the gospel with several medical providers.

Also, our close friend and next door neighbor, Kenneth Bowden, passed away after a long illness. Please take a minute and pray that the Holy Spirit uplift his wife and children. Kenneth and I would talk about death and suffering often. I would go to his house to encourage him, however, I would leave blessed. He was a true Christian and had surrendered to God's will. He was a blessing as a neighbor and friend and he will be missed.

Finally, in the ICU we have met a little girl almost Rebecca's age with a brain issue who was having a similar procedure done. I don't want to tell you her name, but please pray for her also. She is a beautiful little girl and her mom is from out of town.

Lastly, Sutton's Children's is a hidden secret. I hope that each of you will consider making a donation to the Hospital. Everywhere you look, there are crosses and other indications of respect for God and His comforting and healing grace. Most all of our nurses have been Christians and truly love these children. As a family that has been to just about every hospital around, I can honestly say you can feel a deep respect for God in this facility.

PS- Susan, as you read this tomorrow, I want you to know, that I bought myself some heavy duty hedge clippers for my anniversary present after watching Edward Scissorhands yesterday--you might not recognize the back yard when you come home. And if there is a dog in the yard when you pull in, its most likely ours, the girls and I might have brought one home by then. Elizabeth called a family meeting yesterday. There was a quorum even without your presence and "your daughter's" motion to do a study and purchase a dog passed unanimously. :)

Out of Surgery

Surgery went well. Now she begins the healing process. Please keep her in your prayers.