Pee Is Good

Well, we had to use a catheter this morning on Macayla again, but this evening, she did it completely on her own. We were very thankful for that and she was even laughing. Of course, she may have been laughing at the sheer joy her parents expressed over urine more than laughing over the joy of urinating. But she has felt better today and has had a full feeding without throwing up and without seizures. 

One interesting thing we learned from our neurologist today is that a side effect of scopolamine patches (motion sickness patches we use to control drooling) is that they can sometimes cause bladder retention in kids like Macayla. So, we have to see if reducing the patch by cutting them in half might help with the bladder. But this poses a problem since Macayla is not handling the increased secretions she already has and is choking quite often. We may test out another type of seizure med as well. Diastat is meant to stop seizures, but it only works half the time with Macayla. We may try Versed to see if it will work. 

I got curious as to why we use the term "pee" for urine and it comes from the 18th century euphemism for a "p" word that rhymes with hiss. "Pee" is simply the phonetic spelling for the letter that stands for the, well, "p" word, you know that rhymes with hiss. So, there are two interesting things we learned today. O.k., just one, the side effects of scopolamine patches is just another random useless fact!

Well, all this learning today has worn us out and we are probably not going to watch the New Year come in. We will instead sleep then and wake up sometime between 2 a.m. and 6 a.m to be sure that Macayla is voiding. Oh, the joy of 18th century euphemisms! 

Christmas Changes

Macayla had her seizure on Friday night and we had planned to go to Aiken to see my family on Saturday. We postponed until Sunday and for good reason. Macayla had more seizures on Saturday. Sunday morning she seemed more alert and so we went to Aiken. Things went well, though they were a bit more rushed than we had wanted. We were planning to come home on Tuesday, and that morning Macayla started throwing up. It started just before her feeding so her stomach was empty. She threw up 12 times or more over the course of a couple of hours. Her abdomen was distended and we guessed that her bladder was full and she couldn't void. We had to get a catheter from a local home-health store in Aiken and as soon as Jennifer started to insert, Macayla let go. She deflated like a balloon and she relaxed. It was amazing to see her become so peaceful. We guess the pain was causing her to throw up. But then, she had another seizure. We have really been testing the endurance of our suction machine this weekend. Not only has it been needed for vomiting spells, but she doesn't process saliva and mucus as well as before.

But this is part of a trend with Macayla. Every year since her seizures started, she has changed the most between Thanksgiving and Christmas. She always digresses in measurable ways during those times. In 2005, just before the diagnosis, Macayla stopped running over the Thanksgiving holiday. She never ran again. I believe it was Christmas Eve of 2006, Macayla took her last bite of food, her Nannie's macaroni and cheese. Of course there were changes in her walking and motor control and responsiveness throughout the years, but the majority of the changes seemed to pile up at Christmas. Seeing all of these changes at once always makes you wonder if each Christmas is the last one you will have her. This year is no exception. Macayla has shown loss of tone in her tongue, a sign that her muscles around her airway could be loosing tone. This has made it harder to suction her. Her eyesight has changed this year. Her ability to swallow is almost gone. We also believe this bladder problem is neurologically connected and not merely a mechanical issue. She went a long time without voiding recently and almost got a catheter that time as well. She never seems to void unless she is awake and now that is proving more difficult. As the brain changes, the body changes. Once again, we wonder if this is our last Christmas. It's hard to have a perspective on it when each year we enter new territory in the disease. We pray for wisdom and strength as we enter this territory.

Monthly Seizure

Macayla had a seizure last night just before bedtime. It seems she is having them once a month now. She had a series of them in mid-October. She had more at Thanksgiving and now at Christmas. Interestingly enough, each of these episodes have corresponded with trips to see my family. The mention of my family seems to trigger epilepsy. I wonder if there is a medication for that.

Macayla seems to be better this morning. She's even laughed and smiled some. So, we hope we are not going to see any more today.

Well, the paper ripped, bows flew and boxes piled up, but phase one of Christmas is done. I am ready to hunt down the person who persuaded the toy industry to use plastic-coated wire and twist-tie all the toys into the packaging. I often wonder if it is done by machine or by workers. Either way, I can't help but think that factory workers compete to see how many ways they can twist these wires to make the toy permanently attached to its cardboard panorama. They probably laugh to themselves as they think of the tortured kids waiting impatiently for their toy that stubbornly clings to the packaging. They laugh their evil laugh as they picture the red-faced parents, who bite their tongues to prevent inappropriate words from coming out of their mouths, futilely attempt to free the toy with soar, burning finger tips worn down by pinching and twisting wire. Oh, how they snicker and jest at our expense! O.k., it's a bit overboard and a pair of tin snips removes them in seconds, but it is an absurd packaging process. By the way, if you don't know what tin snips are, it probably means you don't have any.

More importantly, we got to be together. We got a great Christmas present as Jennifer was scheduled to work her normal 12 hour shift, but she was able to work a half shift and not go in until 1:00 in the afternoon. We got to do Christmas morning together and she even got to say hi to her extended family at a midday get-together. Having her home was a great gift. Jacob finished up the 12 days of Christmas. His "iElf" told most of the story over nine days and on the tenth day, the "iElf" who Jacob named Jingle Bells, reviewed all of the lessons we had learned from the days prior by singing to ho down music. 

It was quite terrible from the musical stand point, but Jacob enjoyed it. As part of the 12 Days of Christmas, that left us with Day 11 on Christmas Eve. Jingle Bells the elf went back to the North Pole so we read how the angels told the shepherds of the birth in nearby Bethlehem and they went to see. We also read about three wise men from far away spotting the star and how they headed out to Jerussalem. So, we left it there and went to bed and on Christmas morning, baby Jesus was in the manger and we read about the shepherds spreading the word and the wise men giving Jesus three gifts. Santa brings our kids three gifts to remind them of this. Jacob blew out the candle on Jesus' birthday cake after we sang happy birthday. He brought the baby Jesus over from the stable and pretended it was baby Jesus who blew the candle out. It was a great morning to spend time together and with God. 

The next phase of Christmas will start soon as we meet more family we have not seen yet. But we are prepared with sharp tin snips and hopefully some rest.

What I Want for Christmas...

Jacob and I were in the kitchen making pizza dough. After we had kneaded the dough and got it ready for storage, Jacob was washing his hands in the sink. Out of the blue, he says, "Dad, I think I know a way we can cure Macayla." 

I said, "How is that?"

He said, "We can tell Santa that is what we want for Christmas and he probably has some kind of magical thing that can get rid of the Battens."

I responded, "Well, I think Santa would tell us to rely on God because Santa's magic can't do that. He would want us to let God decide when He will heal her."

Jacob asked, "God is going to heal her?"

"Yes, Jacob," I responded. "He will either heal her while she is with us, or He will heal her when she is in heaven."

"Well, I want Him to heal her when she with us," Jacob said.

"Me, too."

"Why doesn't He heal her now?" Jacob asked.

"I don't know Jacob," I answered. I was thinking at that moment about the fact that we are in a fallen world and that if God intervened on every disease and every tragedy, the intervention would never stop. Instead, He has addressed the problem by bringing a cure for a fallen world through Christ at the cross and tomb and has given humanity time to receive that gift before over turning everything at the end with a new heaven and new earth. Our hope lies in the fact that death and hurt will be no more. This hope is not "wishful thinking" but assurance of that which is to come. But, I didn't think I could explain all of that over pizza dough to a five year old. The fact is, I don't ultimately know why God intervenes in some cases and not in others. I don't know what the greatest miracle of Macayla's life will be. Will it be her healing or will it be how her life will touch and change others? So, all I could answer Jacob with is, "I don't know."

But I asked him, "Do you think you could pray about that?"

Jacob answered, "Yes." Several hours later at bedtime, on his own, Jacob prayed that God would stop Macayla's seizures and take her Battens away. That is my prayer as well. But, Jennifer and I must admit that if her healing means she must go to heaven, then we selfishly tell God, "Heal her, but not today." We have to pray for Him to give us peace and reliance on His wisdom and timing as it will be infinitely better for Macayla than ours. Still, Jacob, Jennifer and I really want Macayla cured, with us, for Christmas.

Mr. Bean at Christmas

This kind of humor may or may not appeal to you, but I am a fan of Mr. Bean

Some Additions and Updates

First off, Macayla is doing fine. She does not feel well with the antibiotics on board, but hopefully that will pass when we finish them next week. That will be a good Christmas present. I hope she will not be as lethargic when we are through the medicine. She did get to go see her friends at school this morning for a short visit, and only a couple of them were there. The kids are out till the first week of January and Jacob is not all that excited about it. He likes school. I wish it would stay that way.

I also wanted to draw your attention to some additions on the blog. I have three feeds coming to this blog as well as Jake's Watering Hole for convenience. They are articles from Living On The Edge by Chip Ingram, and podcasts from Let My People Think by Ravi Zacharias, and Key Life by Steve Brown. In my view there are only a few decent preachers and teachers on the radio and these three are top notch. Chip Ingram opens the Word of God in ways that hit home in everyday life. Ravi Zacharias always makes you think and helps me understand why I believe what I believe as a Christian. Steve Brown has a unique way of cutting through the bull to the heart of the matter and has a great sense of humor to go along with it. When you click on it, it should just start playing on a blank screen with a toolbar for starting and stopping the audio. It is pure audio, but if you want more info on any of these guys and their ministry, their links are on these blogs as well. I hope it is as helpful to you as it has been to me.

On a lighter note, I just baked my first loaf of bread from scratch! It actually turned out pretty good for someone who doesn't know what they are doing. The recipe I used was called Pillow Bread, and for good reason. The finished, rustic loaf was the size of a pillow!

Yeah, He Figured it Out!

Jacob is really questioning the whole Christmas thing. He has figured out that the iElf is really my voice. He asked me if I was the one buying the little treat that he finds with Joseph and Mary. Then he asked Jennifer if Santa is real. May I remind you that he is 5?

In light of how commercialized and selfish the Christmas season has become in our culture, we are not going to fall on our sword to protect the secret of Santa. Jennifer told Jacob the story of St. Nicholas (the historical person) and how he surprised poor people with money and things they needed. Jennifer said she believes in the real St. Nick who gave to people in need and did it in the name of Christ to remind us all that Christ is the true gift of the season. Jacob said he believes in the REAL Santa also. 

In our consumer culture, even the idea of Santa has become polluted. He is a magical figure whose purpose is to meet our materialistic desires. The concept of being naughty or nice flies in the face of gift giving since we essentially are telling our children that if they are good, they get presents. If our good behavior earns a gift, it ceases to be a gift. It becomes payment. Gifts should be given out of love and the last thing I want Jacob thinking is that our love for him is conditional upon his performance. The last thing I want him to think is that he is loved more when he is good and less when he is bad. Santa and the gifts at Christmas should point us to God's grace, the free gift we never deserved because we are all on the "naughty" list in God's eyes. The gift of Christ came so that when he went to the cross for us, for our naughty ways (i.e. sins), God could look on us without condemnation. Christ moves us from the naughty list to the "nice" list, we don't do it on our own ability. Jacob is having fun trying to find Mary and Joseph each morning. He enjoys the treats he gets with the story of Christmas each morning. I hope he also grasps the real spirit of Christmas and not the selfish, consumer spirit of our culture. 

He's Too Smart

Jacob has things figured out. I already posted tonight that he is doing well with the 12 Days of Christmas. You can look on Jacob's World if you are just now catching up. Just before bed tonight he asked me, "Dad, are you moving the elf and Mary and Joseph each night?" 

I responded, "Jacob, the elf is following Mary and Joseph around and telling us about their journey."

He said, "That means you're the one moving them. Dad, they are just pretend. Just look at Mary and Joseph. They are too small to be real people."

I had to admit it. Some kids think these elves are magic, but Jacob knows a prop when he sees one. But he still enjoys searching for them each morning. Here is a sample of what he hears when the elf "speaks":

Now I wonder when he will figure out whose voice it really is. 

This whole process has helped me with the Christmas story and being more prepared to celebrate the season. That's why I share it on Jake's Watering Hole. There is more that can be shared from the texts than what I am posting, but this is just a little of what has helped me.

Hoping to Brag

I was hoping to brag today that Macayla was doing really well and getting better, but she couldn't let that happen. The good thing is that her fever has stayed away and her diarrhea finally seems to quit, but I make that statement cautiously. Today, she was very lethargic. She would smile some, but mostly she was out of it. We were trying to load up to take Jacob to school this morning and discovered the van would not crank. I jumped it off with my father-in-law's truck that happened to be here. Got it cranked and loaded the kids. When I put it in gear, it cut off and was dead. I had to jump it off again just to unload Macayla with the lift. I decided to break Macayla's chair down and use the seat as a car seat. That's when the rain started. I put Macayla in the middle of the front seat and had Jacob stand up in the extra cab area and hold her up-right from behind. Right as I am putting the seat in next to Macayla, she heaves and throws up and Jacob was not strong enough to hold on to her so she fell over to the side and hit her head on the hard bottom of the seat I was putting in. The rain picked up. Needless to say, Jacob was late getting to school. He only got there when my father-in-law was able to come and sit with Macayla. She has been fighting mucus all day and that has made her breathing uncomfortable. I take for granted the ability to clear my own throat. How frustrating it must be for her. Anyway, she is o.k. but I wish she were better.

Jacob has done great with the 12 Days of Christmas. He gets very excited and seems to be retaining the main points along the way. It has definitely helped me get more into the spirit of Christmas and more prepared to worship instead of grumble. 

Macayla is Smiling

Macayla seems to be going in the right direction for now. She is still fighting diarrhea caused by the antibiotics, but it is not as often now and she seems to be feeling better. Her fever has not returned and her breathing is better. She has smiled a lot today and laughed a good bit. We did get out for a little while with her today, but we have had to stay close to the laundry for days now. 

I'll try to post some photos of Jacob with the 12 Days of Christmas that starts tomorrow. He's pretty excited about it.

Mac Update and the Funeral

It seems that every year since Macayla started having seizures, she has gone through the most changes between Thanksgiving and Christmas. This year is no exception. She has lost her sight and a lot of tone. She even seems to be losing some tone in her tongue and is consistently going through cycles of lethargy to wakefulness for days at a time. 

During the night, she had difficulty breathing a couple of times and had to be suctioned because of all the mucus. She had a lot of diarrhea and was generally uncomfortable. Her fever has stayed down thankfully. She did well today while I went to my grandmother's funeral. Jennifer said Macayla was alert and smiling a lot while BB and Papa were here. She was the perfect angel while they were here! The only thing now is that she has not voided all day long, so now we are wondering if the infection is really a urinary tract infection. She just keeps us guessing.

As far as the funeral, it went well. We are thankful for everyone's prayers. My grandmother planted seeds in my life that didn't start sprouting until much later, but I am grateful for them. She is a believer and is now in the eternal arms. God's grace was evident at today's service. I kept my voice in spite of the cold I am fighting and my uncle who gave a eulogy was able to share a perspective that made me appreciate the legacy of my grandmother even more. She was used by God in so many ways. My family will need continued prayers as her absence sinks in over the holidays. Thank you again for all of your prayers.

Bad Timing

My grandmother (my Dad's mom we called Mimi) passed away on Sunday afternoon. She was 88 and had suffered senility for several years. I went down to Aiken to be with Dad and family as plans were made. I came back to Anderson late last night and shortly after I got home, Macayla started throwing up. She was not having any seizures that we could tell. She had a fever and redness around her feeding tube. She threw up again at 4:30 in the morning and suctioning her was more difficult than usual. We think she has an infection around her tube so we started antibiotics today. 

This afternoon, she started smiling again and her fever broke. Hopefully she will be able to go with us to the funeral, but it may be that just Jacob and I go. I will be conducting the service but I caught a cold from my family yesterday and I am hoping I keep my voice. We are praying that Macayla recovers fast and for safe travel as many people come from some distance to the funeral. 

Twelve Days of Christmas...Story

By the way, we are planning to take Jacob and Macayla through the Christmas story over the days leading up to Christmas. I divided up the Scripture readings and it turned out to be 12, so we will have the 12 days of Christmas story. That was not intentional on my part, it just worked out that way. The plan is to use the Mary and Joseph figurines from our nativity set and starting on the morning of the 14th, Jacob will have to wake up and find them in the house. We will read about the fact that they have to go to Bethlehem. Each morning, they will be somewhere else in the house and Jacob will have to find them. When he does, he'll get a treat with the Scripture reading. I plan on putting those reference on Jake's Watering Hole as we go. We are basically going to start with Luke 2:1-5 which basically says that Mary and Joseph have to go to Bethlehem for a census and that Mary is pregnant. The next 11 days, we will "flashback" so to speak to see what has led up to that journey and eventually where the journey takes them. Our hope is that this will help Jacob start forming a better concept of what this season is truly about. The consumer mentality of our culture makes it difficult and the fact that so much of our culture refuses to recognize Christmas. I don't expect non-Christians to act Christian or be forced to celebrate it, but if people do want to celebrate it then they should acknowledge why the holiday exists. Some businesses and schools say they are going to honor all traditions by not using Christ in Christmas. I'm not sure how they can honor a tradition by excluding it. If they truly want to honor all traditions, then they should acknowledge them. Let Christmas be Christmas. Let Hanukah be Hanukah. To ignore a tradition in no way honors it. 

I we can keep the focus this season as we read the Christmas story.

Laughter

Macayla has worn herself out laughing a couple of nights this week. It seems that around four in the afternoon on Wednesday and Thursday, she would get giddy and everything she heard or felt made her laugh. I could kiss her on the cheek and she would laugh. Saying her name made her chuckle. Jacob started joking around with her and being silly to which she laughed constantly. She got to the point that she had tears in her eyes and had trouble breathing. It was the kind of laugh that is hard to stop once it starts and it makes your sides hurt. I grabbed the video camera and started recording it and much to my frustration, I recorded the first minute or so WITHOUT sound! I clued in and turned the mic back on and got some of it. She really seemed to have a good time, but she was worn out on Friday.