Merry Christmas in the Midst of the Yuk!

We certainly are a pitiful bunch in the Smoak house. Jennifer had a low-grade fever all last week but the docs could not figure out its cause. We think it was a sinus infection, but because of her symptoms, the hospital would not allow her to come back to work for seven days. Jacob brought home a virus from school and threw up quite a bit on that Friday. Not a fun way to start the weekend. After the weekend was over, I had the virus and twenty-four hours later Jennifer had it. Just in time for her to go back to work and she couldn't! All of our taste buds have been off ever since and Jacob still doesn't have his appetite back. Macayla has avoided it so far, but she has had some dark, puss-like ooze coming from her right ear. She has not had a fever but the ear is very sensitive and causing her pain. We started an antibiotic/steroid ear drop this week. After 36 hours the dark ooze has diminished. But we still have six more days of drops to administer. Her secretions in her nose and throat are still out of control and we have to suction her a lot as she is coughing and gagging so much. I wish I could make it all go away. Of course, none of my "old geezer" problems of gout or joint pain in my hands have ceased. My doctor wants me to get a sleep study (actually Jennifer wants me to more due to snoring!) and a nerve conduction test done as well.

Jennifer's grandmother and my grandparents are all experiencing failing health. Jennifer's grandmother is in the final stages of cancer and we are not sure how long she will be with us. My grandmother is struggling with Parkinson's and dementia among other things and my grandfather struggles to care for her.

In spite of these things, I have been more in the "Christmas spirit" this year than usual. I have to admit that past Christmases has been anti-climatic for me. As a believer, Christ is always with me and His grace is always a present gift. Don't get me wrong, I love the time with family and the wonderful feasts we have together, but the holiday itself has not been as captivating as it has been this year. I have experienced a hope and peace that indeed surpasses understanding. This is not to be confused with "positive thinking." In the midst of these things, I never consciously decided to utilized the so-called "power" of positive thinking to wade through. So many self-help gurus push people to smile their way past problems instead of actually dealing with them. No, we still have to deal with the vomit of stomach viruses, dying loved ones, and Macayla's annual end-of-the-year digression. It's just that Christ has reminded me once again that He is with us in the midst of it. He doesn't invite us to escape the struggles, but to face them; with His strength and for His glory. There was no room for Him at the little inn of Bethlehem, but there is room for Him in our hearts and minds. But so often I put him in the stable out back instead of giving Him his rightful place on the throne. The presence of His peace and joy this season has reminded me of His rightful place. Wise men still seek Him and even lowly shepherds can share the Good News.

What I Was Going to Say...

I was going to post an update and say how Macayla has had a great, grand-mal-free week and she seems to be on the mend. I was going to write how she seemed to be more herself this week. But this morning she showed a sign of seizure activity. She started pursing her lips repeatedly and that seems to be associated with the start of grand-mal seizures. So, I'm not going to write what I was planning to write. I'm not going to say we are out of the grand-mal woods yet. For, she may be starting a weekly pattern instead of a monthly one. If I don't say what I was going to say, will it help things turn out the way that I was going to say they would? Well, I don't believe in jinx but I certainly think we can say things hastily out of our lack of knowledge only to be proved wrong by the future. So, I will just be satisfied to say that today, Macayla has started off happy with a few signs of neurological issues, but thankfully no seizures yet.

We are thankful for this amazing girl and her brother. We are thankful for the God who gave them to us. We are thankful he gave us each other. We are thankful for the amazing blessings he has put in our lives. We are thankful that he is patient, merciful, loving and just. We are thankful for how he teaches us through our children. We are thankful that he loves us as we are AND that he loves us so much he won't leave us the way we are. We are thankful for what he did at the cross and that there is no condemnation for those who are in Christ. These things are not said in haste and the future will prove them correct as the present and past already have. Today, we give thanks to the One who gave us abundantly more than we could imagine. That's what I was going to say.

She May Be Done

As of last night, it appears Macayla's seizures stopped. We will see how she is later today. She is just beginning to wake up which is a good sign. Yesterday morning she was post-ictal and would not wake up. We are getting her Lamictal switched back to the brand name instead of the generic. We actually started that last night, so hopefully we can see some improvement.

She was in a good mood last night. She laughed some and fell asleep right after we gave meds, which is the norm. She had not been doing that on the generic. Granted, there are so many variables with this disease and the brain that we can never be positive if that was the cause, but the timing of these seizures fits with the medication change. So, we will see.

Thanks to the folks who have offered up many prayers and sent messages. We appreciate it beyond what words can convey.

Further Breaking of the Pattern

You can check out the previous post on this ongoing challenge. Macayla awoke this morning with smiles and even seemed more relaxed. She started getting fidgety around lunch time, but was still very reactive and happy. When seizures are lurking close by, she tends to have increased rigidity in her arms and she purses her lips repeatedly. (I like to think she just wants to kiss her daddy, but in fact it's neurological dysfunction. Of course, Jennifer is probably neurologically dysfunctional since she actually does kiss me!) Anyway, Macayla became more and more rigid and "twitchy" as the afternoon wore on and tonight she had a new kind of seizure. Actually multiple seizures.

She became rigid in her limbs, turned her head to the right and her mouth locked into and "O" position for quite a while. She had little versions of this just before the minute or so long one. She gave little sounds out just before they started. When it was over, she became post-ictal and has been out ever since. The way this presented was different than any we have ever seen. Fortunately, she breathed well through the whole thing and never threw up. So, tomorrow we will get blood drawn to check her Lamictal levels and make sure we have enough on board. We hope she will do well through the night and stay asleep and seizure free until morning. But she is just continuing to show us that Battens is not a disease of patterns.

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.