Camp New Hope 2009

We just got home from Camp New Hope in North Carolina. This is the camp started by two brothers for children with life-threatening illnesses and their families. Randy, the camp director, makes sure the families are fed and cared for and she keeps the place in great shape, which is no small task. The camp sits on 160 acres along the New River in West Jefferson, NC. It is beautiful!

Randy's grandson was there and he and Jacob played nonstop the entire time. They turned the volleyball court into a huge sandbox. They fished with me and swung on the rope swing. They tried to earn sugar cookie dough by catching fish or skipping rocks the most times. Jacob is worn out from all of the fun. We discovered some cows on the adjacent property and Jacob removed his shirt and pretended to be a bullfighter. Ole!

Macayla did well overall. She looked like she was going to have some bad seizures on Sunday, but the Versed seems to have nipped it in the bud. She loved being on the Bobcat mini-truck. Its diesel engine, vibrations and the bumps of the trails made her smile. When we took her up the mountain or for a ride at all, it put her to sleep.

Oh, and while everyone back home had sweltering temperatures, we had a nice breeze in the low eighties as a high. It was actually cool in the mornings. Macayla's nurse came along and that helped to free us up for Jacob or to just take a nap. Plus, he was really good about getting her out under the shade trees. He brought along some sawdust and mixed coins in with it so Jacob could search for the money. Jacob got into that! We put Macayla in the river and she liked the sound but it was too cold for her. She preferred sunbathing on the shore with mom. We all ate too much and relaxed a lot. It's one of those places you don't want to leave once you get there.

Camp New Hope has been hit with the economic recession as well. The brothers who started it have worked hard to keep it going in spite of the financial struggles. They could use our help. The camp is a charity and all donations are tax deductible. They have a volunteer staff right now that keeps up the mowing and maintenance which is amazing considering the acres upon acres that have to be mowed each week. Some local churches and individuals have helped raise some money and have donated items the camp needs. But more help is needed.

Refresh Your Browsers! Again

Due to a few technical "opportunities", our website has been redesigned a bit by Jennifer's aunt who we fondly know in cyberspace as the webmaster. She has done such a great job at keeping it up. So, refresh your browser to replace the old look in your computer's memory. Some of the pages are still coming on board, but it is almost complete. Jacob has a new entry from May and look for a June entry soon. Jacob has been busy!

Thanks to Jennifer's aunt, Debbie, for all of her hard work. Thanks to all of you who read, pray, and minister to us. Thanks to Christ for all He is and does.

Home Security by Jacob

Yesterday afternoon, the kids and I were about to load up and run an errand. The garage door was up as that is the way we go out with Macayla. My neighbor from across the street ran up to the front door and told me to call the police. He said a woman just stole my weedeater and a can of gas from my open garage. He said she came to his house first and asked for gas. He told her to go to the gas station less than a half of a mile away. She then drove into our driveway. My neighbor said he watched her walk to her truck with the weedeater and gas can and drive out. He tried to cut her off at the street and she floored it and almost hit him! He was shaking when he came to my door because he was so mad! It was certainly a drug addict in need of a quick fix. She did this at 5:20 in the afternoon when most people are coming home and that would not be the smartest time to plan a theft from a garage. It is sad people get this way.

We called the sheriff's office and reported the situation. I was concerned Jacob would be scared that a stranger came and stole from us. But when he found out it was a woman, he said, "Girls don't like gross stuff, so if she comes back I'll just take off my clothes and show her my hinny! She will think that is gross and run away!"

Are They Gone?

Macayla ended up having six grand mals between noon Wednesday and Thursday evening. She was passed out most of the time between them. She woke up around 11 p.m. last night and has been awake since. She is happy and reactive. It appears she has come out of it. The only residual effects we see is that she has random twitching in her face and some rigidity in her arms characteristic of seizure activity. We have never seen the face twitching before. 

Overall, she is happy and I'm surprised she is still awake. She has tolerated some much needed food and water.

They're Back

Tuesday evening, I was talking with Macayla's pediatrician and told her that Macayla had not had a grand mal for a long time. She had some little seizures and some days that looked like she could have some big ones, but we were beginning to wonder if her brain was capable or connected enough to have a big seizure anymore. The next day, Macayla put all questions to rest. She had a grand mal while we were eating lunch, twenty minutes before we arrived at her neurologist's office for a check-up. It has been ten weeks since her last one and of course she had it when the neurologist could not observe it. She had another when she got home from the doctor's office. These were more like what we saw last year when she would stop breathing and throw up at the end. I'm sure the other patrons in the Haywood Mall food court were a bit freaked to see that unfold. 

She has had two more today and it may not be finished yet. At least with the last one she did not throw up anymore, especially considering she was in her freshly laundered wheelchair and she had just been bathed. 

We have a respiratory therapist coming today to exchange out our faulty pulse oximeter and teach us a bit on suctioning. Suctioning Macayla has become more challenging lately. All of this is exhausting for her and I wish I could just make it all better. But we have to roll with it and maybe the seizures are back now that it is summer. She had her first grand mal seizures almost one year ago. 

Prayers for More Time

Over the course of two weeks, Jacob continued to ask us how much longer Macayla will be with us and we have repeated the answer we gave before as talked about in an earlier post. A couple of mornings ago, Macayla wet her bed so I moved her to the bed with Jennifer so I could change Macayla's sheets. About that time Jacob woke up and for some reason he went straight into Macayla's room. Upon seeing she was not in the bed, he got a worried look on his face and anxiously asked, "Where's Macayla?" He was relieved to discover her snuggling with mom and he joined them. Jacob asked me again yesterday afternoon how long Macayla would live. Later, at bedtime, Jacob said his prayers and thanked God for our family and prayed for Macayla:

"God, thank you for Macayla. Please let her stay with us a long time. Help her live to ten y...Help her stay with us three ye...Lord, keep her with us for five more years." 

It reminded me of the story of Abraham "negotiating" with God over Sodom and Gomorah's fate. I don't believe we ever negotiate with God, but He welcomes our requests like this because we stand to learn through the process. My hope is Jacob and our family learn God hears our prayers and even if He says no, we will still trust Him. It's hard when God will not do things the way we want, especially if we are asking for something good like extending a life. But our view is limited. Our knowledge is limited. God's is not. But still, we pray Macayla will surprise us as she usually does and be with us longer than predicted. However long she is with us, when it is over we will not have to ask, "Where's Macayla?" We know she is in His hands and He promises that is non-negotiable.