The Teacher

Sonny and Cher tried to capture the idea in their hippy way with "The Beat Goes On." The Byrds quoted it in their lyrics to "Turn, Turn, Turn!" The new year is upon us and this used to be a big deal to me in younger years, but now it simply means I have to be careful how I write the date for the next month. It used to mean new-years resolutions I would never keep. Now it means if I am not doing it already, there is nothing magical about January 1st that will make me start. It used to mean parties and the pursuit of debauchery, but now it means the pursuit of dinner, put the kids to bed and hope for a good night's sleep. It used to mean new possibilities, but now I see that any day is a new possibility and a gift from God.

We are blessed to have another year in marriage, and two wonderful kids. We are blessed to have had another year with our family. We have lost some family and gained some family. We have gained new friends. We have gained a few pounds and some gray hairs. We are blessed to know that the challenges we faced have been used by God to grow us and impact others. What does 2010 hold? The same as 2009. God will be in the midst of the circumstances that ebb and flow, change and challenge. Macayla will continue her digression. We do not know if she will see 2011 (in fact it is December 31st so 2010 is still in question), but she is full of surprises and God will be in them.

Long before Sonny & Chere or the Byrds, the Teacher captured the wisdom of ongoing time in the book of Ecclesiastes.

"There is an appointed time for everything. And there is a time for every event under heaven - A time to give birth and a time to die; A time to plant and a time to uproot what is planted..." Ecc. 3:1-2 NASB

The ancient Teacher who wrote Ecclesiastes saw the endlessness of pleasure seeking and that there truly is nothing new under the sun. He concluded rightly that wisdom is found in the reverence of God and following His commandments. My prayer for the new year, the new day, today, is that I will seek Him and follow the path He has for us. In spite of all that "changes" and repeats itself, Christ is forever! He does not change, but we need to and I thank Him for it.

Weekly Seizures

Macayla has been having grand mal seizures weekly now for the last three weeks. Today she had one after lunch and is finally passed out from the Diastat. We think that if we give her Diastat immediately after the first seizure she will pass out and not have any more. The last time I waited to give it after the second seizure (which is what you're supposed to do) she kept having them every two hours. Now, we just hope she will wake up seizure free.

Interestingly, this seizure started slowly and in a different way than usual. It was good because it gave me enough warning to get a chux pad and the suction machine ready in case she threw up at the end as she typically does. Fortunately, she did not throw up but kept having bad reflux for a while afterward. It's just more of the changes we see in her at this time of the year.

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.

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.

Little Cousins

Last weekend, we celebrated Jennifer's grandfather's eightieth birthday. Many family members gathered. We had the opportunity for Macayla to snuggle with her newest cousin, Sophia. We took a picture and I compared it to one we took a few years ago when Macayla was holding Sophia's sister. It's amazing the difference. Sophia also reminds us of how Macayla looked when she was an infant. So, this weekend Macayla was holding a mini-Mac! She did great sitting in the lap of Jennifer's cousin and aunt. Macayla stayed relaxed and didn't fall asleep until we got in the van to come home.

Unfortunately, this weekend is starting off with seizures. We've had two so far in spite of having Versed on board. So now she's about to get some Diastat. She's been having more and more seizure-ish days over the last two weeks but never had any full blown grand-mals. It's been a little over a month since her last ones. She had eleven that time. I hope she doesn't try to break any records this time.

Preparing the Way

Some friends and I are studying the Gospel of Mark and at present we are looking at John the Baptist. John lived out by the Jordan River and called people to repent of their sins and be ceremonially washed in the river by baptism. He dressed like Elijah and ate locusts and wild honey. I asked Jacob if he would like that and for some reason he said no. I told him that if McDonald's existed back then, you could go through the walk-thru and order a pack of locust and request the "wild honey" dipping sauce. Not even Ronald McDonald could sell Jacob on that idea!

John's mission was to prepare the way for the Lord. The Gospels quote Isaiah 40:3 as John being the "voice crying out to make the way for the Lord in the wilderness" and to "make His path straight." I found in a commentary where Isaiah's metaphor is that of ancient roads. The roads were not the asphalt wonders of our day but trails that stayed in disrepair. Servants would go before a king and clear the path of debris and prepare the way for the coming dignitary. John did this for Jesus as he called people to repentance. The path he prepared was the paths of people's hearts. It made me realize that we who believe in Christ are called to do the same thing. Like John we simply share the truth and those who heed it have hearts prepared for Christ to enter. It is He that changes the heart, not us. Like John, we simply have to share and leave the change up to the King. Being like John thankfully does not mean we have to wear camel-hair garments or eat Mclocusts with wild honey dipping sauce. We just go along the path and share. In the process, our own heart gets cleared a little more and we see more clearly the "Lamb of God who takes away the sins of the world."

The path is not always the path we planned on. John spent his whole life as an aesthetic, like a monk rejecting the pleasures of this world (thus, the locust diet) to play his historical role in redemptive history. There were times he questioned this, especially after he was arrested. Surely he wished his life could have been different at times. We didn't plan on the path we are on either. I would much rather we not be going through Battens and there are days I question God, even in anger. But it is the path we are on. It is not one I can change. John could have chose something else, but didn't. Maybe that is why God does not intervene sometimes and change our situation as we may lack the resolve of John to stay on track. Maybe God does not change the circumstances so that we will be on the very path we need to be on to prepare our hearts and the hearts of others. Each of us, even Macayla, plays a part in redemptive history. She has certainly prepared the path of my heart. I have faith that when it is all said and done, we will look back across an amazing picture only God could paint. The unkept wilderness path will be a highway of gold.

Feeding Tubes Are A Gross Blessing

Macayla has had a good week, although her feeding tube has given her some fits. It has been bleeding like crazy because of granulation. We cauterized it with silver nitrate. (These are sticks, which look like long matches and have a chemically reactive tip. The tip "burns" the extra tissue that forms around the tube so it can fall away.) Don't worry, we give her pain meds and apply lidocaine to the area first. But even with those on board, she still hurt. After we treated it, she kept bleeding off and on until last night. It also is time to change out the tube. I hope to change it this morning before she eats and see if the actual track is clear or not. This is the problem. I don't know if I can do this without puking! Changing it is not the problem, but looking down into the open track and applying silver nitrate is. Ugggggh!

I thank God for her feeding tube as it obviously keeps her alive, but it can still give me the willies!

Guessing Game

Macayla has been good most of the week. She had what I would call some "neurological activity" one morning, but not sure what it was. She was very agitated when I went into her room at 6 a.m. and she had been squirming a lot during the night. She fell asleep around 7 and stayed out until mid-day. I don't know if she had seizures during the night or what, but she seemed to settle down over the next 24 hours. She seems to do this kind of stuff for a couple of weeks prior to her "storm" of big seizures. So, we have no way of knowing exactly when they will hit.

She can be such a happy girl that we often have little warning. She smiles and coos and we've even gotten a few laughs out of her over the past month. She is so beautiful. She can certainly brighten up the day. I just wish I knew what she was thinking or perceiving sometimes. Macayla seems to pick out certain sounds that make her smile. We were in a store yesterday and she smiled every time she heard the rattle of passing shopping carts. She often looks asleep at night and will not react when you walk in the room, but will smile when we push the button on her DVD player to stop the movie. There are so many things we wish we knew about her. But the one thing we know she is a gift from God.

Beach Wheelchair

I promised to put pics up of the wheelchair I made for Macayla this summer. You can check them all out on the Uncommon Needs blog.

Sleepy

Macayla has been a sleepy girl this week. She has been asleep more than awake everyday. I guess the beach, seizures and the laughing wore her out. Her heart rate was elevated today even when she was sleeping. I'm not sure if she's just excited on the inside and is having a hard time showing it on the outside. She's in a good mood and when I get a response to her, she smiles. Maybe she will perk up this weekend as Jennifer and I celebrate 11 years of marriage. Hard to believe she ever put up with me long enough to want to get married! But she's stuck with me now!

Jacob is grossed out by us talking about being in love, so we must be doing something right.

Hilton Head 2009

We had a last-minute opportunity to go to Hilton Head Island this past week. My extended family goes there every summer for a family reunion. We have not been able to go every year but it worked out this year. We had a great week overall. Jacob got to play with his cousins, ride waves, and build sand castles. He rode his bike a lot. Macayla got in the ocean with Jennifer and me. She sat on the beach in a special chair I made for her. Pictures of the chair will follow soon. We had big meals. Fishing. Crabbing. The works.

Unfortunately, Macayla started having seizures on Thursday afternoon. She had her first one on the beach and ended up having eleven big seizures total. She did a lot crying out during the seizures, sometimes called an "epileptic cry." She had them all day on Friday, every two hours and two more during the night. She had another on Saturday morning when it was time to leave. Thankfully, the ride home was seizure free. We had a lot of suctioning to do during the ride, but no seizures. As of this morning, she still is exhibiting many of the precursors to seizures, but she has yet to have any. We are not sure if she is done. But we have never had eleven in a row. The beginning of June started with six, but usually she may have three or four tops. She stopped breathing on each one. Her oxygen saturation did not drop as low as usual, but it stayed down longer. That may not be significant, but it was different. She would not respond to diastat or versed. These are the two medications we keep meant to stop seizures. So, we really did it all this past week. In spite of the seizures, we had fun. Macayla enjoyed the pool and even laughed out loud multiple times while she was in the water.

This is one of the few vacation spots where I wish we could live year round. Maybe a church on Hilton Head could call me to be their pastor. We wouldn't complain about that at all, especially if they provide a parsonage!

Prayers

We have encouraged Jacob to say impromptu prayers at night and at the table. The idea is that he will not simply say "Now I lay me down to sleep..." every night without thinking about it. We can become parrots simply repeating a set of words and that is not praying. Jacob has gotten better at praying extemporaneously at night before bed. Saturday night he thanked God for our family and all that we have. He thanked Him for the fun we have had. He asked God to help him with a few things going on in his life and then he paused. For quite a while. Then he said, "God, I'm sorry for the bad things I did when I used to go to my old school (by this he means pre-school) and I'm sorry for the bad things I will do someday." Jacob has become aware that doing wrong impacts his relationship with God first and foremost. So, he has been praying about that more and more lately.

I was in a conversation recently where the person asked how to pray. I said I treat prayer as a conversation, but certainly not with the attitude that I am God's equal. There seems to be such pressure to sound official or poetic when we pray. Maybe that is why canned prayers, which we can simply recite without thought, are more comfortable. But those cease to be prayers at some point, probably once the thoughtfulness ceases. When we talk to each other, we do not speak in poetic cadences or with well rehearsed speeches. We simply talk and let the conversation go where it needs to. Praying is like that with God and His Spirit guides our thoughts and words as we speak to Him. We are not informing Him of anything, but we are being informed. Prayer changes us not God. I have been moved how Jacob's prayers have evolved and how he has changed as a result. It changes me to watch him pray. What a mysterious and amazing thing, this prayer business!

Yosemite Sam and the Pulse Ox

It's 3 a.m. and Macayla is hooked up to the pulse oximeter. It's supposed to alarm if her heart rate or oxygen levels get outside set limits. In her case, seizures make her stop breathing and her oxygen saturation can drop as low as 40%. We set the monitor to alarm as soon as it reaches 80%. This lets us know a seizure is occurring. The alarm is four rapid beeps, which repeat every ten or fifteen seconds. Of course, there is the problem of false alarms.

I purposefully waited until after midnight to hook her up since that seems to be the time she has had her last two seizures, if that is what they were. I set the machine up. It was running fine. I got back in bed. Two minutes later the machine alarms, but only two of the four beeps. That is half of the normal alarm. This means false alarm. Silence for a few minutes. The alarm again. Again it is partial. So I go to check the machine and see if Macayla has moved her hand and knocked the probe out of alignment. She has not moved. The machine is reading perfectly. I stand there and stand there. Nothing. No alarms.

This is typical. When we are in the room, no false alarms. As soon as you step out of the room, random alarms. The readings are perfect when you come and check and there is no "recent data" button to see what happened. But turn your back and the pulse ox goes crazy. I think it waits for you to get into another part of the house and then it calls you back! It forces you to sit next to it in the pre-dawn hours. As long as you are watching it, it is silent. As soon as you turn your back, BEEP! BEEP! BEEP! BEEP! The alarm sounds and I go into a Yosemite Sam tirade of expletives, "Frickin', stinkin', frackin', flippin', blippin'..." This machine is notorious for doing this! It has not alarmed once while I sat here, 20 inches away, and typed. But just wait. As soon as I try and go back to bed, BEEP! BEEP! BEEP! BEEP! If I were Yosemite Sam, I'd use my six-shooters!

That's New

Macayla had a great Monday and seemed to be over her seizure(s) from Sunday morning. We put her on the pulse oximeter Sunday night but since she seemed back to herself on Monday, we did not put her on it Monday night. That was a mistake as it seems she had another big seizure in the night during her sleep. It had to have been between 11:30 p.m. and 5 a.m. She was post-ictal this morning as she would not wake up and she would not wet her diaper. She was sleeping on her side and obviously had something in her mouth. When I suctioned her, I pulled out formula which means she refluxed or vomited. She had to be cathed later in the morning and was lethargic the rest of the day. She is smiling now, but still tired. To our knowledge, these have been the first big seizures she has had in her sleep. It is also unusual to skip a day between big seizures. It will be a long night as we will put the pulse ox on her again. Unfortunately, it gives a lot of false alarms, but we need to know if she is really having these seizures or not.

Busy Sunday

Macayla has been acting very "seizure-ish" all week as we call it. She has little precursors that tend to pop up before big seizures come. But she made it all week without any. As far as we know, she has never had any grand mals during the night when she is sleeping. But this morning changed that. She would not wake up this morning before church. She also had not wet her diaper (another symptom during seizures). Jennifer had to use a catheter and when she rolled her over, Macayla started vomiting.

Apparently, she had a seizure in her sleep, and had vomited some. Amazingly, it was still in her mouth and she was still able to breathe. When Jennifer rolled her on to her back, she choked and had to be suctioned. Jennifer had to deal with all of this on her own as I was already at church preparing for a sermon.

Macayla has not had any seizures since. Fortunately, we have a pulse oximeter that can alert us if there are any more. She was able to attend Jacob's baptism today as well. Jacob did great and it was very meaningful for me to participate in his baptism. There will be more about it on Jacob's page soon.

I Don't Think I Can Do This!

Jacob will be baptized this Sunday. He and I talked about it and I told him what to expect and he was very interested in how he will go under the water. So, we have spoken about it several times over the past couple of weeks. I will also be preaching this weekend and I have been preparing my sermon. Jacob walked into the den today where I was pacing and reading my sermon.

Jacob asked what I was doing and I explained that I was preaching this Sunday. He asked, "You mean this Sunday? When I get baptized?" I told him yes. He asked, "Are you going to talk about baptism?" I told him yes, that in fact I was. Because of what he and I had talked about before he asked, "So, while we are standing in the water you will say all of this stuff?"

I responded, "Yes. I will dip you into the water and while you are under I'll preach my sermon. It should only be about 30 minutes."

Jacob pondered that for about a second, then his eyes grew wide, "While I'm under the water?! I don't think I can do this!"

I reassured him I'll do all my yapping before we get into the water.

Big Brother

Last night, I was cutting Jacob's fingernails. Unfortunately, I cut one in a bit too far and it did not feel good. No blood, just uncomfortable. Later, he and I got in the bed with Macayla and we all watched a movie together. Macayla was having trouble falling asleep. Afterward, Jacob stayed in the bed with Macayla while I got her meds together. I noticed she needed her fingernails cut so I told Jacob I would go get the clippers. I left the room, but from down the hall I could hear Jacob talking to Macayla. He said, "Dad is going to cut your fingernails. He cut mine and one of them he cut too far. It hurt a little bit. But don't worry, Macayla, I don't think he will do that to your fingers."

As I walked back into the room, Macayla was smiling as Jacob was laying next to her and holding her hand. She liked hearing him and feeling him near her. He talked to her and joked with her but after a while he grew still and quiet and so did she.

Camp New Hope 2009

We just got home from Camp New Hope in North Carolina. This is the camp started by two brothers for children with life-threatening illnesses and their families. Randy, the camp director, makes sure the families are fed and cared for and she keeps the place in great shape, which is no small task. The camp sits on 160 acres along the New River in West Jefferson, NC. It is beautiful!

Randy's grandson was there and he and Jacob played nonstop the entire time. They turned the volleyball court into a huge sandbox. They fished with me and swung on the rope swing. They tried to earn sugar cookie dough by catching fish or skipping rocks the most times. Jacob is worn out from all of the fun. We discovered some cows on the adjacent property and Jacob removed his shirt and pretended to be a bullfighter. Ole!

Macayla did well overall. She looked like she was going to have some bad seizures on Sunday, but the Versed seems to have nipped it in the bud. She loved being on the Bobcat mini-truck. Its diesel engine, vibrations and the bumps of the trails made her smile. When we took her up the mountain or for a ride at all, it put her to sleep.

Oh, and while everyone back home had sweltering temperatures, we had a nice breeze in the low eighties as a high. It was actually cool in the mornings. Macayla's nurse came along and that helped to free us up for Jacob or to just take a nap. Plus, he was really good about getting her out under the shade trees. He brought along some sawdust and mixed coins in with it so Jacob could search for the money. Jacob got into that! We put Macayla in the river and she liked the sound but it was too cold for her. She preferred sunbathing on the shore with mom. We all ate too much and relaxed a lot. It's one of those places you don't want to leave once you get there.

Camp New Hope has been hit with the economic recession as well. The brothers who started it have worked hard to keep it going in spite of the financial struggles. They could use our help. The camp is a charity and all donations are tax deductible. They have a volunteer staff right now that keeps up the mowing and maintenance which is amazing considering the acres upon acres that have to be mowed each week. Some local churches and individuals have helped raise some money and have donated items the camp needs. But more help is needed.

Refresh Your Browsers! Again

Due to a few technical "opportunities", our website has been redesigned a bit by Jennifer's aunt who we fondly know in cyberspace as the webmaster. She has done such a great job at keeping it up. So, refresh your browser to replace the old look in your computer's memory. Some of the pages are still coming on board, but it is almost complete. Jacob has a new entry from May and look for a June entry soon. Jacob has been busy!

Thanks to Jennifer's aunt, Debbie, for all of her hard work. Thanks to all of you who read, pray, and minister to us. Thanks to Christ for all He is and does.

Home Security by Jacob

Yesterday afternoon, the kids and I were about to load up and run an errand. The garage door was up as that is the way we go out with Macayla. My neighbor from across the street ran up to the front door and told me to call the police. He said a woman just stole my weedeater and a can of gas from my open garage. He said she came to his house first and asked for gas. He told her to go to the gas station less than a half of a mile away. She then drove into our driveway. My neighbor said he watched her walk to her truck with the weedeater and gas can and drive out. He tried to cut her off at the street and she floored it and almost hit him! He was shaking when he came to my door because he was so mad! It was certainly a drug addict in need of a quick fix. She did this at 5:20 in the afternoon when most people are coming home and that would not be the smartest time to plan a theft from a garage. It is sad people get this way.

We called the sheriff's office and reported the situation. I was concerned Jacob would be scared that a stranger came and stole from us. But when he found out it was a woman, he said, "Girls don't like gross stuff, so if she comes back I'll just take off my clothes and show her my hinny! She will think that is gross and run away!"

Are They Gone?

Macayla ended up having six grand mals between noon Wednesday and Thursday evening. She was passed out most of the time between them. She woke up around 11 p.m. last night and has been awake since. She is happy and reactive. It appears she has come out of it. The only residual effects we see is that she has random twitching in her face and some rigidity in her arms characteristic of seizure activity. We have never seen the face twitching before. 

Overall, she is happy and I'm surprised she is still awake. She has tolerated some much needed food and water.

They're Back

Tuesday evening, I was talking with Macayla's pediatrician and told her that Macayla had not had a grand mal for a long time. She had some little seizures and some days that looked like she could have some big ones, but we were beginning to wonder if her brain was capable or connected enough to have a big seizure anymore. The next day, Macayla put all questions to rest. She had a grand mal while we were eating lunch, twenty minutes before we arrived at her neurologist's office for a check-up. It has been ten weeks since her last one and of course she had it when the neurologist could not observe it. She had another when she got home from the doctor's office. These were more like what we saw last year when she would stop breathing and throw up at the end. I'm sure the other patrons in the Haywood Mall food court were a bit freaked to see that unfold. 

She has had two more today and it may not be finished yet. At least with the last one she did not throw up anymore, especially considering she was in her freshly laundered wheelchair and she had just been bathed. 

We have a respiratory therapist coming today to exchange out our faulty pulse oximeter and teach us a bit on suctioning. Suctioning Macayla has become more challenging lately. All of this is exhausting for her and I wish I could just make it all better. But we have to roll with it and maybe the seizures are back now that it is summer. She had her first grand mal seizures almost one year ago. 

Prayers for More Time

Over the course of two weeks, Jacob continued to ask us how much longer Macayla will be with us and we have repeated the answer we gave before as talked about in an earlier post. A couple of mornings ago, Macayla wet her bed so I moved her to the bed with Jennifer so I could change Macayla's sheets. About that time Jacob woke up and for some reason he went straight into Macayla's room. Upon seeing she was not in the bed, he got a worried look on his face and anxiously asked, "Where's Macayla?" He was relieved to discover her snuggling with mom and he joined them. Jacob asked me again yesterday afternoon how long Macayla would live. Later, at bedtime, Jacob said his prayers and thanked God for our family and prayed for Macayla:

"God, thank you for Macayla. Please let her stay with us a long time. Help her live to ten y...Help her stay with us three ye...Lord, keep her with us for five more years." 

It reminded me of the story of Abraham "negotiating" with God over Sodom and Gomorah's fate. I don't believe we ever negotiate with God, but He welcomes our requests like this because we stand to learn through the process. My hope is Jacob and our family learn God hears our prayers and even if He says no, we will still trust Him. It's hard when God will not do things the way we want, especially if we are asking for something good like extending a life. But our view is limited. Our knowledge is limited. God's is not. But still, we pray Macayla will surprise us as she usually does and be with us longer than predicted. However long she is with us, when it is over we will not have to ask, "Where's Macayla?" We know she is in His hands and He promises that is non-negotiable. 

We Weep With Those Who Weep...

The past several weeks have been tough for several families we know. One family lost their child five days after birth. She was born at twenty-four weeks. Another family lost their daughter, age 19, after a stroke. She had spina bifida. Another family we know just delivered their full-term son only to find him without a heartbeat. He was revived and is in NICU now. Another family we know has a son with Battens and he was in the hospital for over a week and the doctors did not give him much chance of living. Fortunately, he is back home and doing well for now. 

It is difficult to see all of this pain. It brings us closer to the reality of our own situation. We ache for these families and can relate to them, though we cannot know how they feel. Each of us go through grief and suffering differently. What is shared are the tears. Jesus shared those tears at Lazarus' tomb. He wept for the grief death and sickness brings us. Further, God the Father is not aloof to our pain for He watched His only begotten Son die on a cross. God the Father not only relates to how these parents feel, but He knows how they feel. He also has His arms around these children and nothing, not even death, can separate them from the love of God. Still, we ache and grieve, but not without hope.

Macayla is Eight!

Macayla turned eight on Friday. She started the day feeling bad, unfortunately. She was having a cluster of small seizures and a lot of reflux and mucus. Not fun. But around midday she perked up and we took her to school where she had a party with her friends. She has not seen her class in a while and they were excited, especially about the cake! She smiled and interacted. She lit up when they sang "Happy Birthday" and she appeared to feel better overall. It was also field day at school and Jacob was participating. It was a beautiful day and everyone had fun. Macayla unfortunately had another cluster of seizures that evening but she was able to smile some and drift off to sleep. 

Last week, Jacob asked Jennifer if Macayla will be with us much longer. Jennifer asked what "much longer" meant to Jacob. He asked if she would live to be ten years old. Jennifer answered honestly that she did not think so, but that our neurologist has always thought she would live to be ten. Jennifer told Jacob that most kids with Macayla's type of Battens live around 6 to 8 years. Jacob said, "Macayla's already made that!" He went back to playing. We have had two funerals this week for children and it has made us think afresh of how short time can be seem. Eight years with Macayla and half of those have been with seizures. Half of those have been with medications, doctors, hospital stays, surgeries, and needles galore. But all of those years have been with her and in spite of the pain, they are precious. Some of our fondest memories have even take place in the hospital or doctor's office. All of those years have been a blessing to us and even to other people as well. She and the other children like her show us that every life, no matter how short or afflicted, has purpose. Everyone of us has an impact that goes far beyond ourselves. 

We do not know how many more birthdays Macayla has to celebrate with us, but we are thankful and amazed at the eight we have been through. We look forward to what God will continue to do through her, however long that may be. 

A Warning Not To Blog Too Soon

I finished the last entry talking about how Macayla has been on a plateau and shortly after she begins having seizures. She had the beginnings of grand mal seizures, but they did not last too long. She was very agitated all day Sunday. Macayla's grand mals start with her chin going up and down rhythmically and last anywhere from 30 seconds to a few minutes. On Sunday, her chin would do this motion for only a few seconds at a time. She later had a moment that looked like it could be a seizure, but she moved in ways I had never seen before. We gave her Diastat to stop them, but she did not respond. It was quite puzzling. Monday she had a couple of moments early on, but she has not had any issues since. 

I guess I blogged too soon about her stability so she reminded me that we have to stay on our toes. 

Plateau

Macayla has definitely been on a plateau. We notice the progression of Battens has been full of them. She will digress and lose abilities or gain symptoms then she will flatten out and not change much for some time. The longest plateaus seem to occur in the spring and then changes begin in the summer. Last summer she started grand mal seizures. They became more and more frequent and tapered off in late fall. Then she lost bladder function at Christmas and continued to have grand mals. Then in late February or early March, her bladder function became more consistent and she only requires an occasional catheter. 

It is nice to have consistency and we cherish it. She is usually comfortable during the plateaus and routines are easier to maintain. But this plateau, like the others before it, will come to an end. We do not know when the next round of changes will come, but they will. In the meantime, we cherish her smile. She has been very interactive and that helps us assess how she's feeling. My prayer is that we will become more and more prepared and equipped to help her along the way. I want to say thank you to so many who have been praying. We could not get through this without your love and support.

Good Weekend

We had a busy weekend. Some friends got married on Saturday afternoon and Sunday we had family in from out-of-town. Macayla was having little seizures but she was smiling and laughing quite a bit in spite of it. Of course, when one is surrounded by family like this, how can you not laugh?

I am not sure if I want to claim any genetic connection to these folks! I think they escaped the town of Whoville in a Dr. Seuss book. But this morning, Macayla was quite lethargic. I think she was quite worn out from yesterday's "activities." Those Who's from Whoville require quite a bit of entertaining (not to mention hairbands).

Happy Easter

Thursday night, we had a modified seder meal to remember the Lord's Supper. The Jewish culture is so rich in story telling that we took our cues from there and modified the Passover meal to not only tell the story of Moses and the Passover, but also the crucifixion of Christ. Our seder plate was not kosher by any means since we had to come up with some of our own symbolic foods. We used romaine lettuce as our "karpas" to dip in salt water. The stems tend to be bitter like the slavery of the Israelites, but the green vegetable is a symbol of life. The salt water helped us talk about the Israelite tears and the Red Sea. Jacob's favorite part was the pyramid built out of rice krispie treats and icing. Jewish seder plates usually have something called choreset which is a fruit and nut puree meant to remind us of the mortar that the Jews made for Pharaoh's bricks. Jacob did not like it last year. So, rice krispies became the bricks and icing the mortar. Plus we not only talked about how Pharaoh tried to build his kingdom this way, but how we become the "bricks" Christ uses to build His Church. We had hard boiled eggs to represent the hard heart of Pharaoh and how our hearts get hard toward God. But at the end of the meal, we peeled the egg to show how Christ can remove the hardness of our hearts. We went through the four cups that Jesus went through, each one representing parts of the story of redemption. We did a foot washing and broke the bread. Jacob really enjoyed it and it challenged me to learn more as well.

Jacob's other hands-on learning experience was the tomb. On Good Friday, we put Jesus on the cross and posted a soldier to keep watch. Friday afternoon, we took Jesus down and wrapped him in a cloth and placed him inside the tomb.

The Roman soldier stood guard outside until this morning. Jacob found the stone rolled away and Jesus is missing. He had to find the "risen" Christ figure somewhere in the house.

Jacob later came and asked, "Jesus came after Adam and Eve. Adam and Eve sinned and we all have sinned. How did Jesus not have sin?" We had to explain that Jesus was God in the flesh. When God took on a human body, he had two wills: the will of God and the will of a man. Jesus never sinned because his human will always submitted to God's will. There were times I'm sure that Jesus' human will wanted to give into anger or violence. I'm sure there were times he wanted to say something that God's will would not want. But Jesus always submitted to the divine will. We were able to tell Jacob that we often choose to do what we want to do even when it is not what God wants and that is sin. I told Jacob that Jesus could have sinned if he wanted to, but he always chose not to. Since he was not born through a man and woman, but through a woman and the Holy Spirit, he was able to make that choice freely. If Jesus had ever sinned, his work on the cross would have been for nothing. It would not have saved us. Jacob understood the need for Jesus' purity. He asked, "You mean if Jesus sinned, we wouldn't have a savior?" That's right, Jacob. And the great news of Easter is that we do have a Savior.
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Beautiful, Whiny, and Tough

What a beautiful weekend it was weather wise. We went outside and planted a few plants with Macayla and Jacob. But Jennifer brought home a special guest on Thursday night. A dachshund/pincher mix. He was quite whiny and scared of his own shadow. We have had dogs in the past and we are used to bigger dogs who tend to be alphas. This dog was not an alpha, more like an omega. He was very attentive to Macayla and loved Jennifer. He did not like Jacob and I. He would cower every time we even looked at him. He followed Jennifer everywhere and when she was not here, he whimpered and whined. 

Unfortunately for the little dog, he was used to being around constant companionship with other dogs. He did not like being away from the pack. So, he went home on Saturday. 

Macayla had a pretty good day and enjoyed the sun, however I let her legs get a little sunburn as the shade of the tree she was under shifted. She laughed a good bit that afternoon at Jacob. But Sunday, she was very agitated and having multiple seizures (small ones) that lasted up to a minute or more at times. So, she got diastat while we were at church. She relaxed some, but never fell asleep from the medication. She seems better this morning, but still not 100%. She fell asleep around 4:30 yesterday afternoon and slept till 4:30 or 5:00 this morning. But after she fell asleep, we found her like this:

 What started as a beautiful weekend outside, ended as a beautiful weekend inside.

Til The Whole World Knows

This past Sunday, Jennifer and Jacob went to church while Macayla and I stayed home. I still haven't been able to track down the actual name of the song, but Jennifer and Jacob sang along to it on the way to church. It has a chorus that goes, "We won't stop til the whole world knows!" Jacob told Jennifer he had a problem with that song. He assumed that the song meant we won't stop praising God til the whole world knows. He told Jennifer, "That's not good. Even if the whole world knows, we should never stop praising God." 

Hopefully the song actually meant that we won't stop til everyone hears about Jesus. I hope Jacob continues to use that sharp discernment and that it gets even sharper before his teen years!

"Praise does not provide the answer; Praise is the answer."  - Calvin Miller

Happy Day

Macayla had a day full of laughing yesterday. She just seemed to find most noises and people funny. She smiled and cooed a lot. She still seems happy this morning, but I think she wore herself out yesterday. She fell asleep early and is a bit reserved today compared to yesterday. 

By the way, if you haven't already, you may want to check out the latest on Jacob. 

House Finches

It's that time of year when a few house finches build their nests under the awning of our back porch. Every year we have at least two couples building a home out there. They do not have to worry about foreclosure. They do not have to worry about water bills or electric bills. They do not have to worry about doctors or medications. They build their nests, hatch their young and leave until next year. In the moments before yesterday's dawn, I could hear them chirping and it brought to mind the time Jesus said for us to look at the birds, they neither sow nor reap but our heavenly Father feeds them, are you not more important than they? The chirping of those birds reminded me not to worry as Jesus said. Worry adds nothing to us but anxiety and later Paul would write be anxious for nothing, but in all things through prayer and petition with thanksgiving let your requests be known to God and the peace that surpasses all understanding will guard your hearts and minds in Christ Jesus.

Worry prevents peace. Worry distorts our hearts and minds. But Paul said for us to make our requests "known" to God. Doesn't God already know my requests? Doesn't He already know my needs? Obviously, if He is an all-knowing God, He does. So, why do I have to make them known? Apparently, when struggles come along, making our requests "known" to God is for our benefit, not His. When we make requests known through prayer and petition with thanksgiving, it helps us have the proper perspective on our needs and our worry. It helps us be honest about ourselves and desires. When I remember to be thankful for what I do have, it helps me not get so wrapped up in what I don't have. Nothing here tells me that God will simply remove my struggles or that I can simply put everything on "cruise control." The birds still have to build their nests and get the food God provided. I think the key to what Paul wrote often gets overlooked. People often quote this text beginning with verse six, "Be anxious for nothing..." But the second half of verse five has the short sentence, "The Lord is near." The chapter and verse numbering was developed centuries after this letter was written, but I believe if Paul could have had a say in how the text was numbered, I think he would have put "The Lord is near," in with verse six. "The Lord is near. Be anxious for nothing..." God is a transcendent, all-powerful, all-knowing Being who decided to be immanent among His creatures. 

As Easter approaches, we can be reminded how immanent the God of the universe decided to be. He put on flesh, dwelt among us, lived a sin-free life, died and rose again. His death was for us, for our sins, so that while we were enemies of God in this fallen world, He came and died so that we might have life, so that we might have more than this fallen world has to offer. He is in it with us and for us. We only have to trust Him. We must build our nests, our lives, within His shelter. I'm glad I hear the chirping before dawn. It reminds me to be thankful and allow God's peace to guard and shelter my heart and mind for the day. It reminds me where my life needs to be built.

New Child

Macayla woke up a new child today. She was relaxed and had no seizures that we are aware of. She just smiled and "talked" some. She even crinkled her nose as she smiled a few times. It was very nice to see her back to herself. It helped us all relax. We appreciate the ongoing prayers and thoughts of so many. We really could not go through this with any real strength with out the grace of God and He communicates it to us through so many of His people. Thank you.

Three Days In A Row

Macayla's day mirrored yesterday. She started with a grand mal at 6 a.m. along with a bunch small seizures. She got diastat but did not react. She continued to be agitated all morning. We took her to see the endocrinologist to day to see what, if anything, could be done to lessen puberty's painful effects for her. Throughout lunch and the waiting room, Macayla kept having seizure-like actions and it became difficult to determine if they were petit mal or grand mal seizures. Her grand mal seizures do not usually cause massive convulsions like they would in others. So, she got another dose of diastat but it still did not knock her out. Just like yesterday, she had a rough morning but then on her own she settled down in the afternoon. I'm hoping she's done for the week.

I will post more on the endocrinology visit on the Uncommon Needs blog later. I have some research to do for that, but the gist is that Macayla is at a Tanner 4 according to the doctor. She could start menses sometime between two months to a year from now. Of course this brings with it discomfort, cramping and pain. None of which Macayla will be able to communicate with us. So there is a drug called Lupron that can be used to stop her periods completely. It is an injection given every three months according to the doctor. He also advised us that long-term use causes osteoporosis and is not advisable in most children. But Macayla's life span is short enough that this should not be a problem for her. We are going to research some articles the doctor recommended to us and then decide. He said that if we choose to use the medication, then we would be advised to wait until the first menses occurs. We are also aware of the ethical concerns of this approach. That is why we want to research and pray over it. Unfortunately, the medical community has not done much to look into these issues to help families make these decisions. So, research it is.

Not Fun

Macayla had a grand mal yesterday around 2 p.m. We were just coming back from the park where she responded and smiled a good bit when the geese would honk. She seemed fairly happy and not "seizurish" at all. But she zonked out afterward and slept until 4:30 a.m. this morning. She was very agitated and had another seizure at 6 a.m. We gave her diastat and she slept until about 10. She is still agitated and doesn't seem to be out of the seizures yet. She keeps going from cold to hot. She's not running a temp, but she gets goose bumps one minute and then flushed and hot the next. It has not been a fun day for her. I wish we could make her feel better.

The Biggest Person in the House

Macayla has done well this week overall. The antibiotics are working and she has stopped running any fevers or throwing up. She has struggled a good bit with secretions and has had to be suctioned in the mornings a good bit. She started a few clusters of seizures yesterday, but never had any grand mals.

But now for the really big news. Jennifer turns 36 today! For the next month and seven days, she will be older than me! Jacob says she is the "biggest" person in the house. At 5 years old, the word "big" means "older." Of course, he also thinks that the "biggest" person is the boss and I have to assure him (when Jennifer is not around) that I'm the boss! He doesn't seem to believe me for some reason. Every year we have fun joking about how I'm married to an older woman for a month. Jennifer doesn't find the humor in it as much as I do. 

New Infection

Macayla started running a fever and throwing up over the weekend. It looked like she may be getting an infection around her feeding tube, but it is always hard to know for sure. The last time she was running a fever and throwing up, we noticed that she had redness and swelling right at the scar of her old tube site. It makes us wonder if she possibly has a pocket left there that is perfect for abscesses to form. But she also exhibits symptoms of coughing and excess phlegm like she could have a sinus or respiratory infection. It is hard to know. It could be that she is refluxing the infection up if there is an abscess in the stoma at the original feeding tube site. (Boy I hope you are not reading this during your lunch break!)

Anyway, we have started antibiotics and her fever and vomit have both stayed down. She smiled a lot today and with the beautiful weather we have had for two days, I think she got a bit of spring fever, which is much better than an actual fever. We went outside and hopefully the blooming bradford pear trees will not aggravate her sinus. As I am writing all this detail about Macayla's bodily fluids, it makes me wonder if I should start a weight-loss blog where I could supply detailed descriptions of the gross stuff that happens in home health. Then readers could log on and lose their appetites and lose weight! Well, maybe not. I see this stuff daily and my appetite has not suffered! Better stick to the gym.

Snow!

We had to wait until March for it, but we finally got snow in Anderson. Five inches of snow! Jacob was very excited. Unfortunately, Macayla slept through the event as she had seizures and had to get Diastat. She is smiling more today, but the snow is melting quickly.

The event started with rain that slowly turned to snow. But Jacob could not wait to catch the snow on his tongue. The rain stopped and the snow piled up through the evening and into the night. Twice I had to climb a ladder to clean the snow off of the satellite dish to keep the signal so we could watch for weather updates. O.k. really I just wanted to watch a Clint Eastwood movie. Looking out the window was all the weather update we needed.

The snow was good this morning but the sun is warm and the snow won't be around long. That did not stop Jacob from mounting an extensive snowball attack on dad! Jennifer got involved and they ganged up on poor, little old me. But I gave them a barrage of snowball fire they will not soon forget! 

Jacob-Induced Laughter

Macayla got energized last night when Jacob jumped into her bed. Every time she heard him talk and move around, she would smile and even laugh. The most interesting part was that if Jacob and I left the room she would become more vocal. She would quiet down a bit when she knew we were in the room. Apparently she did not want us to far away. 

All that playing must have worn us all out, because we all went to bed early and slept late. Macayla slept the longest of all. Jacob has so much energy that it wears us all out to keep up with him. 

This was particularly good medicine after several days of Macayla not feeling well and the seizures on Thursday. 

Joy

We are saddened that Macayla's therapist, Joy Delorme, has passed away after a battle with cancer. Joy worked with Macayla at Pediatric Therapy Works and was such a blessing to our family and many others. She made Macayla some hand splints to keep her hands opened and stretched out. We have been missing her for quite some time as she was unable to work. 

Joy is one of those lights in the world that brightened it for everyone. She took care of us all and reflected the love of Christ to others. It is another reminder of the fallen world we live in to lose someone so bright and special. In a word, it "stinks" and that is not a strong enough word for it.

But we rejoice in the life she lived and how it touched us and Macayla. Macayla's life has been enriched by Joy and we are not alone in that sentiment. 

The Whole Day

Macayla had seizures the remainder of the day. Five total. Her second dose of diastat seems to have done the trick. She got that at 1 p.m. and is still out at 11 p.m. We are not sure why she had them today and why the diastat had a hard time working. She seems to have a tolerance to it in spite of the fact that the dose is adequate for her weight. It should be noted, that she smiled between seizures today. She was never agitated and never seemed to be in pain. So, I guess it is a good thing if you can smile between grand mal seizures.

Now we will watch to see if her bladder function continues are becomes impaired. We have wondered if her bladder function (or lack thereof) and seizures have correlated over the last two months.

Jacob has brought home more than homework from school. He brought home a stomach bug and missed almost half of the week. He is better now, but not before giving me a touch of it. I have been trying to lose some weight anyway.

New Seizure Look

Macayla seems to be having seizures that look different than before. At first, we were not sure, but the more she does it the more we realized what they were. That is the challenge with her. Her seizures manifest a certain way for a while and we get used to that but then as she changes, the way the seizures manifest changes. We confirmed it the other day when I had to suction her. She understandably does not like it when a tube is stuck in her mouth. But the other day I was suctioning her and thought she might be having one of these questionable seizure moments and she did not even flinch from the tube being in her mouth and down her throat. So, that was enough for me to know it was a seizure. Our nurse manager was here and watched it happened and she thought it looked like a seizure as well. 

This morning, Macayla had two more grand mals. The last ones we know of were just before New Years. So it has been a month and a half. These were slightly different and involved much more jerking in her extremities than before. Her arms jerked in violent bursts when they usually only tremor. The seizures only lasted about a minute and she only stopped breathing for a short part of that time. I gave her some diastat and she will hopefully sleep it off. 

Refresh Your Browsers!

We have a redesigned website now. Jennifer's aunt has been such an amazing help to keep it going and give it a "make over." If you visit our website often, you may have to refresh your browser when you go to it in order to see the new design. Your computer probably has saved the site with the old look. Refreshing it will change that for you. There are a few details to still put in, but the site is operational. We will add a description to the homepage and to Jacob's page. We are also adding a new prayer request on the prayer page. Be sure to check it out. 

Macayla has been doing well the last two days. She struggled this past weekend to be herself. She seems to be having more seizures that we can notice and it wore her out Saturday and Sunday. But yesterday, our nurse Gene, took Macayla out for a walk and she loved it. The air was brisk and Macayla loves that input. She has been smiling a lot, even a few "nose-crinkling" smiles. She likes to go out when it is cool, she likes to go out when it rains, she likes to go out when it is sunny. She just likes to go out.  One of her favorite things to do has always been to lay in the grass and roll around. She is an outdoors kind of girl.

Some Valentine's Thoughts

From the Farside by Gary Larson...

"And I like honesty in a relationship - I'm not into playing games."

"Confession time, Mona - I've led you astray."

The Dopey Opossum

Well, due to a miscommunication between Jennifer and I and my negligence, Macayla got her medications twice last night. I'm amazed it hasn't happened before now (at least that we know of). These medications are powerful and include Lamictil, Keppra, Clonapin and Baclofen. The Clonapin is the most powerful one and her night dose is the largest of the day. So, Macayla was quite sleepy today. I did not realize that I had done it until this morning. Fortunately, Macayla was responsive and breathing fine in spite of the overdose. I just thank God for his protection and her resilience. 

So, in reference to the previous post, Macayla wasn't playing opossum today.

The Smiling Opossum

Macayla usually falls asleep between 8 and 9 at night. Often we can walk into her room and she will be sound asleep. But then, as we turn off the TV and dim the light in the room, she will smile, sometimes without even opening her eyes. Her hearing has become very acute and even startles at some sounds. She has lost her vision, but she is keenly aware that we are surreptitiously moving around the room. Her hearing is her superpower and her smiles are beautiful. We find it funny when it seems she is playing opossum at bedtime.

Over all our little opossum is doing well. Her bladder function has sustained and as far as we know, her last big seizure was just before New Years. Her secretions and breathing vary day to day, but overall we have been able to keep her comfortable. She is still reactive and loves to be held, kissed, talked to and she loves the sound of her brother when he jumps in the bed where she is resting. She lights up when she hears his footsteps or voice coming down the hallway. She likes listening to movies and music. She really listens to movies with horses in them. She responds most to Summer of the Colt, Spirit, and Flicka. She also seems to like the two opossums in Ice Age 2 for some reason.