Sumo Perseverance

Jacob and Macayla were watching a Veggie Tales movie this morning about sumo wrestling that is a spoof of the Rocky movies. The lesson in the story is about perseverance. Jacob has to wear a patch on his eye two hours a day for lazy eye. He hates it and I don’t blame him. But considering the subject matter of the movie, I thought I could help Jacob and take the opportunity to apply the idea of perseverance to wearing an eye patch everyday. He didn’t buy it. Instead, he took a scarf and wrapped it around his waist and croch making a sumo “diaper” out of it and he asked me if I wanted to fight.

GI Issues

Macayla has always had problems with constipation, but she went over a week without a BM and it was the longest I’ve ever seen her go without. So on Saturday, I gave her some mineral oil through her feeding tube and an enema. But nothing happened on Saturday. I noticed something black in her feeding tube valve, so I drew some of her stomach contents out and found black blobs floating in it. We dismissed it as possibly left over blood from where we changed out her feeding tube at the beginning of the month. Sunday, the BM’s came with a vengeance but her stomach contents changed to a dark brown liquid. This cleared up by Monday, but was back on Tuesday. We already had an appointment with neurology and our pediatrician set for Wednesday. After all of the dust settled, we are testing Macayla’s stomach contents and BM’s for blood. We started giving her Maalox to try and promote healing of her stomach lining because that seems to be the most likely problem. Her stomach contents seem to be staying clear. But this morning she got very upset and began to cry. I can’t remember the last time she cried. She seemed to be in pain, but it is hard to tell. She can’t communicate anything and it’s hard to tell if it was from pain or frustration or just an emotional outburst. To complicate matters, we are weaning her off Cystagon (an experimental medication). We believe that while she has been taking this medication, it has been interacting with one of her seizure meds and keeping the seizure medication level down. As we wean her off the Cystagon we expect the seizure medication level to increase. That increase could cause behavioral changes. So Macayla’s responses to her environment are tricky to read. She could be having a seizure, be in pain, be having an emotional outburst, be reacting to changing medication levels, or she could just simply be having an appropriate response to something, like a dirty diaper. The events that have kept her up at night that resembled seizures could have been responses to a painful stomach. We will be doing an EEG soon to determine if that is the case.

Runaway Grapes of Irony

We’ve had two nights of Macayla not sleeping. She seems to be having seizure type activity that wakes her out of a hard sleep. We opted to give her Diastat last night to stop it as we did a few weeks ago. Needless to say, we are tired. Jacob, on the other hand has had two of the best nights of sleep in a long while. This morning, I really wanted to make sure Jacob got to school because his class was going to a swim park and then making banana splits. (Actually, I wanted to leave him with Macayla and I wanted to go!) So, I moved a sleeping Macayla from her bed to her wheelchair and loaded them up to go. But Jacob wanted to take the last four grapes he had from breakfast with him. He picked up his bowl and was carrying that with both hands and his bear was tucked under his arm. He was walking down the slope of the driveway while I was loading Macayla on the van lift. I notice a grape roll across the concrete in front of me and it was followed by the whining voice of Jacob. “Dad, I lost my grape!” My impatience was pretty high this morning and that was aggravated by two sleep-deprived nights. I told him to let it go and get in the van. “But Dad I wanted that one!” By this time, I am walking around to the side of the van to strap Macayla in. Jacob is whining and so worried about the runaway grape that he doesn’t notice that he is tilting his bowl. Two more grapes roll out onto the concrete. Jacob and I paused and watched the two grapes roll under the van and out of reach. The whining and crying were about to pour out of Jacob. I could see it coming like a sandstorm rumbling toward me across a desert plain. But my frustration was faster to the draw! I grabbed the last grape in the bowl put it in Jacob’s hand and then jerked the bowl and took it back into the house. Jacob in the meantime ate his grape and pouted in his car seat. I came back out and told Jacob that he better get his act together and show that he was thankful that he was going to get to go swimming and make banana splits. I reminded him of how difficult it was to get him there because I had such a “hard” night with Macayla. But the reality is that I missed a teachable moment and all I really wanted was to have myself acknowledged. I wasn’t concerned about Jacob being thankful for swimming and banana splits. I wanted him to be thankful for me, Super Dad! What a disappointment I can be. Jacob had four grapes and one rolled away. Once it was gone it was gone and there was no way to get it back. He was so worried about the one that got away that he forgot what he still had, three grapes in his bowl. His whining and concern over the one grape cost him two more. I was so concerned about the sleep that I lost and couldn’t get back. I was so concerned about the acknowledgement that I was not getting, that I missed a great teachable moment for my son. He didn’t need a lesson in “be more careful next time.” He certainly didn’t need a lesson in how well I am at pitching the adult version of a fit. He could have used a lesson in that being thankful comes when we recognize the blessings we do have and that loss can be a lesson in itself. He may have profited from the lesson that when one grape rolls away, it’s not fun, but it makes you appreciate grapes more. Here’s the fruity irony of runaway grapes. Jacob has recently learned about the fruit of God’s Spirit: love, joy, peace, patience, gentleness and self-control. I’ve been encouraging Jacob to ask God to help him be more patient and self-controlled during hard times. Jacob did not see any of those fruit in his Dad this morning. Now that he’s at school, I’ll have to wait until this afternoon to apologize to him and ask for his forgiveness. I hate waiting on that, but there’s a lesson in that too.

Melatonin

Macayla has to take melatonin to help her sleep at night. Our doctors suggested this to us. It is a natural substance that we produce in our bodies that essentially helps us slow down to fall asleep. According to our doctors, people with neurological conditions may have trouble producing melatonin properly. So we have to give it to Macayla. However, the normal starting dose form an adult is 3 mg. Macayla takes 12 mg and sometimes 15 mg. The doctors stated that this is where to start with children like Macayla. It has helped to keep her sleep more consistent, but there are no guarantees on some nights. The best thing we have found though for anyone who has a feeding tube is a melatonin capsule made by Life Time (a vitamin and herbal company) and we get it from a local health store. It can be opened and sprinkled in 20 ml of orange juice with 20 ml of water so that it can be pushed through the feeding tube. We have used tablets and crushed them, but they don’t dissolve or mix well at all. This is one of those practical things I thought might be helpful to others with children on melatonin. It’s like doubling diapers for quicker changes on the road.

What's your prognosis?

For the past couple of weeks, Macayla has struggled with her walking. She cannot walk on her own, but we have been able to assist her by holding her up and allowing her to make the walking motion with her legs. We have a gate trainer, but this has had minimal success with her. This is a device that resembles a walker that babies use when they are learning to walk, but it’s made for larger children. With our assistance, she only shuffles at best and for just a few steps. Her therapist got her to walk better on Wednesday by using a slightly different technique. I tried to learn this technique, but have yet to be consistently successful.
All of this to say, Macayla seems to be losing another ability. It is these times that we are reminded of where this is headed. We know what the prognosis is. It will be vegetative and fatal. The word prognosis is from Greek and the “pro” means prior or before and the “gnosis” means knowledge. We have prior knowledge of what will happen. We know what will happen, but that doesn’t prepare me for the grief of watching it happen. That prior knowledge is not a bypass for pain and grief. This is also on top of Macayla’s strange “episodes” that may be seizure activity where she seems to have rigid and repetitive movements accompanied by vocal outbursts and sometimes laughing. Our prior knowledge of symptoms does not compare to the actual experience. I went to a funeral this week for a young teenage boy who died suddenly. I know we will have a funeral for Macayla one day, but as I looked at those parents, I was reminded that there is no preparation for burying your child.I know more abilities will be lost. I know we have new types of seizures to experience. I know we will have feeding tube problems. I know we will have blindness. I know we have a funeral to plan. But I believe in another prognosis. I believe that Christ has her. I received that prognosis before we got our diagnosis. That prior knowledge tells me that Macayla will be with our Lord and she will be whole. She will be kept safe and will experience love and healing in its fullness. But between now and heaven, it means that we will experience Christ in our lives through all of this. A guy named Paul once wrote, “We grieve, but not as those without hope.” Hope is stirred by some sort of evidence. Christ makes himself evident in the midst of our grief through Macayla, Jacob, Jennifer, and so many people around us. Our prognosis tells us that Macayla’s life will and is impacting people around her and at the end of this phase of the journey she will be with Christ for eternity. Because of the fact that I have trusted Christ as my Lord, I have the same prognosis. The good news is that eternity has already started. Here again, the prognosis does not compare to the actual experience. I hope all who read this have the same prognosis as us.

Camp New Hope

Due to the generosity of some great folks up in North Carolina, we were able to stay in a mountain lodge for a week stocked with food and fun. The five bedroom cabin we stayed in was situated on 160 acres along a river in the mountains near West Jefferson. The camp is called Camp New Hope and was started by two brothers who wanted a place to let families with special needs get away without the financial burdens of vacation. The land was gorgeous and they keep the areas around the house and along the river front mowed (a three-day task every week). We were able to take Jacob on the canoe and paddle boat. Macayla was given a ride in an ATV that was essentially a golf cart on steroids. She loved to ride in it. My parents and little brother went with us and it was great to spend some with them away from the hustle and bustle of life. It’s hard to convey how relaxing it is to be there. The cabin donned a front porch enclosed with windows so that we could sit and have the view of the river below and enjoy the afternoon sun and breeze coming through the screens. Our hostess, Randy, went the extra mile to make sure we had anything we needed and even the things we just wanted. She made a special run to the store to get Jacob some pink ice cream and some orange sherbet just because he likes it. She even did some laundry for us!! We got to go up on the top of the mountain and get great video and pictures. We saw a lot of nature and went swimming and fishing. They have commercial coolers like the ones in convenience stores that are stocked full of sodas, water, Gatorade and candy. It was cool enough at night to have a campfire next to the river and roast marshmallows. The lighting bugs in the trees at night put any set of Christmas tree lights to shame. They made the trees seem alive with light. They hovered over the water and reflected their glow and an occasional lighting bug would crawl around in the grass at your feet and make the ground glow beneath you. The only thing that would have made our trip better was if it lasted another week. We’ll have more pictures on the photo album page soon.

Bat Pooh

We had a birthday party for Macayla and Jacob on Saturday, June 2nd. Their birthdays are only a week apart and we decided to have it all together in our backyard. Jacob wanted “superhero” party but he couldn’t decide on which hero. So, we had several. We had Mutant Teenage Ninja Turtle plates and Spiderman cups and Superman napkins and so on. Macayla on the other hand had a Winnie the Pooh party. So we had two tables, one with heroes all over it and the other graced the gang from the hundred acre wood. We had a Winnie the Pooh cookie (the large chocolate chip cookie with Pooh drawn on it with icing) and a pull-apart cupcake cake with Spiderman icing and multiple action figures stuck in the top. The kids played on the swing set and had hotdogs and cake and rejoiced when the candy poured from the piñata. It was fun. But there was one thing missing in my opinion. This was a superhero and Pooh party. Batman is Jacob’s favorite hero and I suggested that we decorate the Winnie the Pooh cookie a little more. I suggested that we use black icing and draw a Batman mask and cape onto Pooh and we could call him “Bat Pooh.” Alas, the chocolate chips may be too reminiscent of guano! If you aren’t sure what guano is, just walk inside a cave infested with bats and see what they deposit on the cave floor! My wife was not keen on my idea. It was vetoed!

"It's like an earring...?"

Fridays are the exciting (scary) days around here. Last Friday we got our first experience with using Diastat on Macayla to stop a long seizure. This Friday, we changed out the valve on Macayla’s feeding tube in her stomach. She has what is called a Genie feeding tube which is basically a button that is flush against her tummy and this button allows you to snap tubing from the feeding pump on to it. Every few months, the valve needs to be replaced. So, we replaced it and that involves pulling the tube out enough to get a clamp on the actual tubing behind the valve. This clamp seals it off while the valve is removed and a new one is put on. The valve change went great, but shortly after, Macayla’s shirt and bed were soaked and smelled like formula. We discovered that the tube had a cut in it. It was pouring out from around the valve when we moved her. At this point, we aren’t sure what to do. We’ve never experienced this before and we were not prepared. I thought that the only way to replace the actual tube that penetrated her tummy was in surgery. So, I am panicked and kicking myself because I was the one that changed the valve and may have damaged the tube with the plastic clamp. She would have to go under anesthesia which is risky. Will she come out of it? Needless to say, I felt terrible and angry. We took her to the surgeon’s office and they looked at it and said, “Yep, we’ll have to do some yankin’!” “What exactly do you mean by that?” I asked. “We just yanked the old one out and thread a new one in,” our nurse said casually. I couldn’t believe that you could just yank it out without pulling her belly open and I really couldn’t believe how casually the nurse said it. But I must remind you that I get the willies if there is a hair wrapped around Macayla’s tube. Yanking it out would make me pass out! Sure enough they just yank it out and the soft, pliable flange inside folds up and comes out. It is painful they say. Macayla didn’t flinch. Well, according to my wife she didn’t. I was outside the room because I wasn’t about to watch. They threaded another one in with a rod and cut it to fit and installed the valve. The nurse told me it is like having your ear pierced. She said that tissue had built around the tube and made a tunnel or hole that stayed open like the hole in a pierced ear. That’s all fine and dandy, but only the pin of an earring goes through the ear, not the diamond stud on the end! Macayla had a flange yanked through her belly. She didn’t flinch and she was back home and eating by 7:30 that night. We weren’t prepared, but the tubes do fail. The valves and the tubes themselves. When they do, it’s a mess and it’s scary. But it was much simpler to fix than we thought. It is painful for most kids. It was described that it felt like having the wind knocked out of you. Macayla can’t express pain properly, so we aren’t sure what she felt. But all is well and we were able learn and prepare for the next time.