Little Stinker!

Sunday evening, Macayla had two more grand mal seizures. That's two weeks to the day since the last ones. One lasted about 30 seconds in the car. The second was an hour and half later and lasted 2 minutes. We gave her diastat and she slept until 3 a.m. She was nauseated and a bit agitated. We gave her medicine to combat the nausea and she slept for a little while longer. Monday morning, just before 9 a.m. she had another grand mal that was over 3 minutes. She got more Diastat. Overall she did much better through these and breathed better through them. Therefore, I did better. But the Diastat took longer to affect her that time and she only slept for two hours. After the seizures on Sunday evening, we noticed that Macayla's heart rate was very irregular. It was so irregular that it was difficult to even count. It stayed irregular through the night and Monday morning. We decided to go in for an EEG at the neurologist's office and while we were there we could walk over to cardiology and do an EKG. This was all scheduled for 3 p.m. Monday. On the way over to Greenville, Macayla became more alert and laughed. When we pulled into the parking lot, I listened to her heart and it was beating completely normal! She was acting completely normal. The EEG and EKG were completely normal! Normally this is a good thing, but in our situation, we actually want her to be abnormal during an EEG and EKG so that we can determine what is going on. The little stinker would not show off for the doctors! It is good that she recovered, don't get me wrong, but we wanted to catch these grand mals on an EEG and we wanted to do the EKG while her heart was acting strange so that we could know what we are dealing with. For now she is very clear and laughing a lot. As a matter of fact, she didn't even sleep last night. She laughed every time we came in to check on her. She had a great old time watching movies all night and laughing at her sleepy parents trying to get her sleepy. Little stinker!!

What Not To Do!

When transferring someone from one bed to another and they have a feeding tube with the extension set still attached, it is always best to ensure that the extension set is not caught on anything. The extension set is the 12 or 24 inch tube that connects to Macayla's button on her feeding tube. It got caught between me and the bed rail as I lowered her in the bed this morning. I had no idea until I heard a strange gurgling pop! I looked down and saw her shirt getting wetter and wetter and then noticed her extension set and Mic-Key feeding tube hanging free from the bed rail. I had accidentally yanked her Mic-Key out of her stomach! The whole point of us going to the Mic-Key was because it has a balloon that can be deflated for removal and this causes less pain and damage than feeding tube systems like Genie and Bard Buttons that have to be yanked out. So, in carelessness, I yanked Macayla's Mic-Key out of her. She handled it much better than I did. I felt so bad that I did it. It was one of those moments of panic where I was holding her whole tube in one hand and trying to plug the hole in her stomach with the other and asking, "What now?!" Once I regained my presence of mind, I called out to Jennifer who saved the day. Good thing I kept it together and didn't loose control of the situation, huh? 

The good thing was that it was time to change out her tube and we had a replacement at home. So we put the new one in and it is cleaner and a better size to fit the thickness of her stoma and abdomen wall. It certainly has not been a dull 48 hours. See the next post.

Camp New Hope

We had a great vacation at Camp New Hope last week. As mentioned in the previous post, Macayla laughed a bunch. Randy Brown is the director of the camp and she goes above and beyond to make sure everyone is comfortable and has what they need. We had planned on taking Jacob's fishing rods one of which is a Spiderman one. Jacob was very excited about it, but Dad forgot to pack it. So Randy ran to Wal-Mart and picked one up for the camp so Jacob could use it while he was there. One of the owners of the camp, Will Adkins, flew in on his helicopter and we got to meet him and one of his associates from the company. They brought a dog named Swiper which Macayla loved along with Randy's dog, Muggsy. The dogs got her laughing more than anything and it was contagious. Macayla's laughter quickly spread to all of the adults. Jacob enjoyed watching the helicopter take off and fly out of the valley. We got it on video so he could show his friends. The camp did some neat things to commemorate our trip. They had some birdhouses donated and they wrote Macayla's name and the date we were there on the bottom. Then we hung the birdhouse on a fence post on the mountain. Randy hopes to get a picture of it with birds in it and send it to us. Another amazing thing they did was they started putting trails in on the mountain and they were in the process of naming the trails like streets. The main trail at the bottom of the mountain was called Macayla Mtn. It was engraved on a wooden street sign and we got to bring the sign home with us. Each week that trail will be named after the child who is there. We met the nice couple who makes and donates the signs to the camp and they were a treat. 

One of the most powerful additions to the camp is the Chapel of Hope. What was a tool shed last year is now a small chapel for families to use. It has pews in it, a stain glass window, a kneeling rail for prayer, and some beautiful portraits in it from Stephen Sawyer. A young man named Joshua is a new addition to the Camp New Hope family and he was the creative hands behind the Chapel of Hope. His carpentry made the wood floors and beautiful wood ceilings possible. It reminded me of the story in the Old Testament where God gifted men like Bezalel and Oholiab to build the Tabernacle for the Israelites. Joshua's gift for carpentry among other skills were a blessing to us. The chapel is truly a sanctuary and I found it to be a great place of quiet and peace, not to mention a great place to work on the upcoming sermon I had. We are so thankful to the Adkins brothers and Randy for making a vision a reality. We are thankful that God brought Joshua into their midst and we are praying that all of the families that come there will experience the peace, joy, faith, hope, comfort, and love we have. It is truly a harbor for stormy lives. 

Go!

Last Sunday Macayla had three grand mal seizures. She has never had grand mals before and it took a while for us to figure out what was going on. However, she stopped breathing during the seizures, the longest of which lasted about 45 seconds. She bypassed turning blue and turned gray. She turned gray and her eyes glazed and she looked like she was slipping away. I tried suctioning her to get her to breathe, but nothing seemed to work. It was a helpless feeling. It was a moment when you realize you are watching your child die and there is nothing you can do to stop it. Fortunately, Jennifer got home in time for the third attack and she recognized it as a seizure so we gave Macayla Diastat and it stopped them. Macayla's immobility made it hard to recognize it as a seizure and the first indication I had of a problem was when Macayla threw up. I thought she stopped breathing because she was choking on vomit, but it was the seizure that stopped her breathing. After getting the Diastat (a rectal valium medication) she slept for 13 hours without another problem.

The whole event shook me up. We were scheduled to leave the next day on vacation at Camp New Hope, but I truly wanted to stay at home. The thought of traveling 4 1/2 hours to a remote location seemed overwhelming. But Jennifer's wisdom, faith and strength has a way of straightening me out at times. She observed that we did all the intervention we could have done and it would not matter if we were at home or in the mountains if it happened again. She reminded me that Macayla would miss out on a great trip that week if we did not go. More importantly, we had decided the day we got the diagnosis of Battens that we could either curl up and die or we could live and we chose to live. Macayla's life is not the way we pictured it, but it is the life she has and we must live it. We are so glad we went to Camp New Hope this week. Macayla had a great time. She lit up as soon as we put her on the Bobcat (an open air mini-truck that has four-wheel drive; picture a golf cart on steroids). She loved the vibration and the wind in her face and the bumps as we road around the mountain. She got to go skinny dipping in the river one day and squealed with delight. The next day we put her in the river with clothes on and she loved it and laughed. Laughter was the word of the week. Macayla got so tickled on Thursday when she sat on the floor with a couple of dogs that happened to be there. Muggsy was a little Pug that licked Macayla on the face and Macayla started laughing uncontrollably. She got so tickled that everything we did for the next three hours brought laughter. She wore herself out laughing and playing in the water and almost dosed off riding in the Bobcat afterward. Jennifer and I remembered this week that the last word Macayla ever spoke was, "Go!" She used it in therapy to indicate she was ready to go down a slide or start an activity. Even when she could no longer make the "o" sound

she would just make the rough "g" sound to mean "Go!" After she lost that ability, she would hit a switch that activated a voice recording of the word "Go!" Jennifer observed how appropriate it was that Macayla's last word was "Go!" That is a great reminder that we must keep going. We cannot curl up and hide. We cannot stop living life just because it turned out shorter than we expected. Whatever life any of us have must be lived. If we had stayed home this week, we would have missed out on some of the most precious moments of life we have had with Macayla. It is scary at times when Macayla's condition progresses to a place we've never been before. It can feel overwhelming to get everything together and travel. We cannot control the disease. We cannot control all of our circumstances. But we can decide how we will respond to those circumstances. Macayla has reminded me that life is experienced when we get up and "Go!" 

Rapturous Joy

Macayla and Jacob had a great birthday party. Hotdogs, cake, chips, beans, candy topped the health menu. There was some fruit which hit the spot on a hot day. Macayla stayed awake the whole time and even laughed some. Last year she slept through her birthday party.

Lately, Macayla has been laughing and smiling a lot. Yesterday she was so tickled for some unknown reason that she couldn't stop laughing. She started laughing so hard she couldn't breath and tears formed. Whatever it was that made her laugh, I'm glad she had it. Her laughter is contagious and when it starts, it gets everyone else laughing too. That rapturous joy is but a taste of what is to come for Macayla when she is with Christ. I often wonder what Macayla perceives. Medically speaking, one would think she perceives less than the rest of us, but there are times I get the feeling she perceives that which we cannot. I would love to see what she sees sometimes. I would love to know what gets her laughing uncontrollably. Some days, I make it my objective to make her laugh, but it doesn't always work. My antics probably generate thoughts in Macayla that would be left unknown! But I look forward to the day that she and I can share that rapturous joy in heaven. We will finally have the full clarity of our Lord's work in our lives and have full perception of joy and love. It will be the best party ever.