Broken Pattern

Macayla has had five grand mal seizures so far today. They started at 7 a.m. and she has not responded to the emergency meds like Diastat and Versed. She is passing out after them for a short while, but as soon as she wakes up, she has another seizure. She even had one while she was still asleep. Fortunately, she has not thrown up much because she hasn't eaten all day. Unfortunately, she hasn't eaten all day. These seizures started off stronger than usual and her oxygen level has stayed low for a greater portion of the seizures than normal. I wish I could snap my fingers and fix it.

Hopefully, she is finished but they have been coming every two hours and the last one was one hour and 45 minutes ago. All of this to say, she had a grand mal last week and now she's having a series this week. The pattern this summer was her series of grand mals would come once a month. Thus, we think they are hormonal. It was unusual to have these a week apart and for her to have a different oxygen saturation. But in the bigger scheme, historically, the disease has progressed between Thanksgiving and Christmas each year. She may be following that pattern. Then again, our insurance said they would only pay for the generic version of Lamictal and that started last week. In the past, the neurologist insisted she be on the name brand. We will have to get the neurology office help us to see if this minor change could cause an increase in seizures. There are so many variables and pseudo patterns in this disease, it's hard to keep up.

Miss Hyper and Happy

Macayla had a grand mal yesterday afternoon and she got a dose of Diastat immediately. It caused her to throw up but she came through fine. We thought she looked a bit "seizure-ish" Tuesday. She was lethargic and seemed to feel bad. But yesterday she was miss perky! She smiled a bunch and even got vocal. She has been falling asleep around four in the afternoon and sleeping until 3 or 4 a.m. lately. So, yesterday it was interesting how upbeat she was and then to have the seizure after she fell asleep around 4 p.m.

She woke up this morning between 2:30 and 3:00 and I got up to be with her as that is the most likely time she would have a repeat seizure. But she only had clusters of small ones. She was miss happy and hyper all day and stayed awake until 7:45 this evening. She may have fallen asleep earlier, but a bad bout of hiccups kept her up. I am hoping this means she will be back on a more normal sleep schedule. We have been spoiled by the past year of her sleeping in a fairly normal pattern.

I had to suction her throat and nose quite a bit today and I am amazed how often she will smile in the midst of those procedures. She is such a beautiful girl!

P.S. Jacob's page has been updated!

I Wish I Could Make It All Better

Macayla has struggled with a lot of mucus and drainage in her nose and throat for over a week. It seems to be some kind of crude she passed on to me. But she can't process the drainage in her sinuses like most people can so she gags and chokes frequently. It's worse during the night. We suction her and at times get nothing out, even when I run the tube through her nasal cavity. Other times, we get a ton of gunk out and she clears up for a few minutes only to do it all over again. Mucinex and other meds have minimal impact. This is when I wish we had little nano-bots armed with nano-shopvacs that could maneuver their way through the sinus cavity and systematically remove all mucus and gunk. (Sci-fi medicine!)

I know how frustrated I get when I can't seem to get my throat cleared, but for the most part I can usually clear it. Macayla does not have the capability to clear her throat. Occasionally, she gets a good swallow in, but that is not always effective. We spray saline into her passages to try and loosen everything up and then suction, but it is an ongoing process. I know she must get frustrated by it, but she is such a good patient. She still smiles in the midst of all this. I just wish I could make it all better.

The Ever Growing, Throwing Up Girl

We took Macayla to a nutrition visit yesterday. For the past few days, Macayla has had increased reflux and hiccups. Saturday, there even seemed to be an extra number of noticeable seizures and I wondered if that was making her reflux more. Sometimes seizures can cause the muscles in her torso to spasm and push up on her stomach. Yesterday before we left, she kept acting like she may have reflux and started to gag. I would suction her, but nothing would come out. It was as if she was gagging on something imaginary. On the way to the nutritionist, Macayla threw up in the van. She did not have a seizure as far as we can tell.

We continued on to the visit and even made it on time! She weighs 82 lbs and is 57 inches long! She has not stopped growing. Fortunately, her height has grown faster than her weight so her BMI is good and headed in the right direction. But my back wouldn't mind if we were dealing with smaller numbers all around! Now we hope and pray the reflux quits.

Surprised by Surpsise

Jacob and Macayla seem to grow so fast. Jacob has had a lot going on this year and the year is almost over. It was a blur. In fact, you can see a video of him on the other blog Smoak Lens or on Youtube. Plus, his page should be updated soon, so keep a check. The kids have outgrown so many clothes and Jacob's interest and thinking are changing. But why is it we get so surprised by the passage of time?

If we see a child we have not seen for some time, we may say, "I can't believe how much she has grown!" Even financial advisor, Dave Ramsey, says to always keep an emergency fund available for emergencies, but the kids outgrowing their clothes does not constitute and emergency! Kids grow. It is predictable therefore budget for it! We are surprised by the passage of time and I find that surprising when I think about it. Time passes, things change and we often find ourselves taken off guard by it in spite of the fact we know it will happen. We get so wrapped up in the menial tasks of daily life, that when we actually pause and take inventory of where and when we are, it is a surprise. This has such a profound impact on us as humans that it is the inspiration of multiple songs.

Maybe it is because we were created for eternity which is most like the Present and not the past. Paul the apostle wrote, "So then let no one boast in men. For all things belong to you...life or death or things present or things to come; all things belong to you; and you belong to Christ; and Christ belongs to God." 1 Corinthians 3:21-23 It is notable in Paul's list that "things past" is missing. If we belong to Christ, our past does not define us but Christ does. We cannot change our past failures and successes. We can only turn those over to the cross of Christ and let Him utilize them in the best way. In Him, we can be focused on today and the future to make the most of it. Certainly, we can learn from the past, but the best way to do so is through the lens of Christ. He can take our past and utilize it to shape our day and our tomorrow and our eternity infinitely better than we can.

In the meantime, we may still be taken off guard by the passage of time. I can't believe October is almost over! This is a symptom of living in the fabric of space/time I guess. But that passage of time will be without regret if we belong to Christ through it all. We can know today in Christ prepares us for an eternity with Christ, so we must make the most of today. We do not want to be surprised in the future by the fact that what mattered most in the past was if our present day was lived for Christ. In other words, today is tomorrow's past. If we live today for Christ, then tomorrow already has a better foundation. Then the biggest surprise of all will be the view from eternity when we see how Christ plugged our story into His bigger plan of redemptive history.

I Touched the Pacific!

For the past two weeks, I have been in Los Angeles doing some work for some friends on their home. They graciously flew me out here and it was an opportunity to see them, my sister and cousin and see LA. Unfortunately, being out here means I missed seeing Jacob lose his first tooth. Jennifer sent me a picture of it on my phone. Macayla had one grand mal while I was gone and Jacob got the flu. Either I timed this trip really bad or really well!! Jennifer had a lot of help from the grandparents and our nurse while I've been gone.

This was my first time in California. LA has some amazing food and interesting people in it. Venice Beach is a sight! Imagine a carnival on steroids and drugs at the same time and you have some idea what it is like. I did get to put my foot in the Pacific ocean for the first time in my life, which may not sound like a big deal, but not many people have seen both the Atlantic and Pacific. It was really cold! My sister took me to the Getty Center, an art museum, and we saw some amazing pieces. She took me with her to a film set and it was stranger than fiction! I couldn't have made up the characters I met there.

I'm almost done with my trip to LA and I head home this weekend. I have had some interesting and even surreal experiences here. LA seems to have a ton of people living close together and at light speed with little regard for what is around them. It is very different from the laid back pace of the South. To be a Christian here is out of the norm. In spite of these differences, I have spent some wonderful time because of some good friends and family. I miss Jennifer and the kids massively and can't wait to see them.

Comedic Seriousness

Jacob is interested in joining the Cub Scouts. He's pretty excited about it and there's a meeting for it tonight. We left the house for school this morning and as usual Jacob brought along a couple of toys for the ride. But I begin a serious explanation about how the Cub Scouts is a commitment on all our parts and not just a one-time deal. It's ongoing and we have to commit to going to the meetings. Further, we have to know how much it costs, etc. etc. Jacob listened. He asked if he could stay in it until he grows up. So, I figured he wants to commit. But I told him I wasn't sure if we could financially do it yet and his mother and I would let him know. At the end of my serious commitment and responsibility speech, Jacob says, "O.k. Dad. If you will excuse me, I'm going to play with my toys now."

Check out Jacob's page for more of his drollery.

Better Than Dad!

This morning, Macayla woke up with a lot of congestion and mucus which made it difficult for her to breathe. I could tell it was in her nasal passages and down her throat. Most of us process our mucus constantly to where it doesn't build up and if it does, we can expectorate it or swallow. Macayla can do neither. I had to suction her a bunch and we use a flexible tube catheter to suction her with. It helps us to go further down her throat and down her nose with less damage to the linings of her throat and nose. It took a while this morning to clear her out and get her comfortable.

Then I noticed she had a lot of gunk built up around her feeding tube and began to clean it off. In doing so, I noticed fresh granulation tissue around her tube for the millionth time. It was bloody and tender. So, this morning, Macayla woke up to tubes down her throat and her tummy bleeding and hurting. But she still smiled.

It never ceases to amaze me how she can smile after we do that kind of stuff to her or after having to struggle to breathe through mucus. I am not that good of a patient. I get a headache and I'm in a bad mood. If I had to put up with what she does, I don't know if I would ever smile again. But she does. She still smiles when I talk to her. She still smiles when the suctioning is over and sometimes even during the suctioning. My wife is a nurse and has to put up with a lot of patients, but I'm one of her worst while Macayla is one of her best. There are times I am feeling bad and do my best not to tell Jennifer just for the sake of our marriage! I know I am not going to respond well to nursing care. God help me if I get old! I pray He will give me the same strength and attitude He has given Macayla!

Spiritual Foot Fungus

I was working on an article that related to Ephesians 6 and the armor of God. Among Christians this is a familiar passage of encouragement. It reminds us that our fight is not against "flesh and blood" but the "forces of darkness." We are not to fight people but corrupt worldviews. But one of the "pieces" of armor Paul listed has really struck me. He wrote we need to "shod" our feet with "the gospel of peace." Paul is speaking of implements of war and puts the "gospel of peace" among them. What a contrast.

How can the gospel of peace help us in a fight? In light of the fact we are fighting worldviews and not other people, it is an essential piece. All too often, Christians can come across as belligerent and self-righteous. The people who are caught in the clutches of corrupt worldviews can miss Christ because of our poor reflection of Him. Paul may have had the passage from Isaiah 52:7 in mind as he wrote this. "How lovely on the mountains are the feet of him who brings good news, who announces peace and brings good news of happiness, who announces salvation." In our battle, we need to bring the good news of peace and salvation that comes from Christ to those who struggle with sin just as we do. We can only do this if we remember our fight is not with people, but the dark forces of this world. I think this is why Jesus told us to pray for people who are our enemies. If someone is caught in the mentality of a corrupt worldview, they need prayer. All of us are influenced by these dark powers and only through Christ can we find freedom and victory.

This piece of armor has made me take pause and check my "self-righteousness" levels. Literally speaking, I have some ugly feet. Just ask my wife, or maybe, don't. There is little hope my physical feet will ever be beautiful or lovely, but they do not have to be spiritually ugly as well. Self-righteousness and belligerence is the foot fungus of spiritual feet and the gospel of peace is the cure.

No Broken Records

Macayla made it through the whole weekend with only two big seizures we know of. She was very fidgety all weekend and had short seizures that contained a few of the components we see in her big ones. Her chin tremors continued off and on and her eyes had a lot of nystagmus during these short seizures. So, she may have had more than two but they were brief.

She slept in today and has been quite happy this afternoon. So, maybe we will be free of seizures for another month or so. Last month she had eleven big ones before it was over, so we are thankful she did not break that record.