Me and my big blog!

Well, after "bragging" about Macayla sleeping all night each night for a week, last night's bedtime did not come until 3:30 this morning. We couldn't get her to fall asleep for nothing! On top of that, she woke up at 7:00 a.m. I just don't get it. She seemed to be suffering a lot of dementia through the night and it seems that it kept her up. I just pray that she will sleep tonight and not be bombarded by the dementia again. So, needless to say, the pendelum swung the other way last night. Never a dull moment.
On more important news, Ella (Macayla's cousin), seems to have come through her surgery well and is recovering. We just continue to pray for healing and recovery and that her mother will also get some relief from a kidney stone that acted up in the midst of all this. Their family has certainly had their share of long nights this week.

On Our Toes!

Macayla and Jacob have a cousin named Ella who is one year old and was just diagnosed with pneumonia last week. Unfortunately, the infection was not controlled by the antibiotics and she ended up with multiple pleural effusions (pockets of fluid/puss). She will have surgery tomorrow and we are praying for her and her mom and dad. We ask everyone who reads this to pray as well.
Macayla has been fighting nausea and vomiting for days now. We have been on the verge of taking her to the ER twice because she couldn't keep food or fluids down. But each time we were ready to opt for an IV and a bag of fluid, Macayla would get some water down and keep it down. So, we avoided the hospital. Another interesting change in all this is that after weeks of not sleeping much at night, Macayla has slept every night and even taken naps for a week now. We are really not able to keep up with her! Maybe we can blame it on the fact that she is female and will change her mind and methods quite often. The doctor had us reduce her cystagon dose by half because vomiting is a side effect of that medication. We did this yesterday and then gave her formula through her feeding tube slowly (5 oz. over a two hour period). This was an idea we got after talking to Macayla's grandfather who has experience with tube feeding. After that, Macayla was like a new child. She started playing and talking and that was a relief after two days of being weak and dehydrated. This morning she ate by mouth like a horse and hasn't stopped all day! We really have trouble keeping up with this girl. She doesn't sleep, she sleeps. She vomits, she doesn't vomit. She eats, she doesn't eat, she eats. She certainly keeps us on our toes!

It Figures!

After a few weeks of difficulty sleeping because of seizure-like jerking at night, Macayla has slept too well at the hospital. Her 24 hour EEG was intended to capture these spells at night, but she barely twitched a muscle. So, they decided to keep her another night to see if we could catch it. Finally, she did her thing during her nap just before discharge. We aren't sure if what she did was seizure activity or not and we won't know for a week or so, but we hope they got enough of something to determine it one way or another. She still has the seizures we are used to seeing, but just not as many outwardly. So now we wait.
She has vomited every weekend since our G-tube was placed. She threw up at home Sunday night, and then again at the hospital during the EEG. We are not sure if this pattern is due to reflux brought on by the tube or a side effect of the medication or just a change in her brain or digestion. It is mysterious. We are investigating this next week with a nutritionist and pediatrician.

Outside the City Revisited

As mentioned in an earlier post, I certainly can relate to Jonah sitting outside the city wondering what God is up to. Jonah's response was anger as is mine some days. Anger is a natural response to suffering or grief or disappointment. Anger occurs when we realize that we are not as in control of life as much as we thought. Suffering often comes through unexpected circumstances. Those unexpected circumstances throws our lack of control in our face and reveals the illusions that we have about what is really in our control and what is not.Through multiple sources (sermons, Bible study, articles, people, prayer, etc.), I have been challenged to look at suffering in some new ways. The Bible is full of Scriptures that call for us to endure. This is the same Bible that says Jesus came to bring life and bring it to abundance. How in the world does this fit together? I wonder if the abundant life is discovered in the midst of endurance. I wonder if the abundant life is discovered not only in victory, but in despair, in the kind of despair that leaves us no choice but to turn to Christ. Scripture also says that Jesus’ work on the cross is complete and that this finished work will restore us from not only sin, but suffering as well. Where and when is that promise obtained in our lives? When does the work of the cross remove death from our existence? I’m not sure I can answer that completely, but Jesus knew that his suffering on the cross would lead to Easter Sunday. He knew there was an Easter Sunday coming, but Good Friday still hurt like Hell (literally). So it would seem that the only way to be completely healed of suffering and sin is after death. Isn’t that what Christ said? We must take up our own cross daily, deny ourselves, to die to our old way and be raised to new life. Physical death frees us from the physical suffering of this world. Jesus also meant that we must die each day spiritually to free us from the sin of our lives. I believe this is not just about salvation because we “daily” take up our instrument of death, the cross, to be healed. I pray that we find the abundant life in the midst of suffering. I pray that we find our trials as opportunities to serve Christ. I pray that anger will give way to worship of a God who came from up there to down here to transform me.

Surfing the brain waves

We are going in next week for an EEG to determine if some of the changes in Macayla recently are seizure related. Every time she tries to sleep, she has multiple rhythmic jerks that flow through her body. It can sometimes take her an hour to two hours to fall asleep because of them. We think that the jerking is myoclonis and we want to see if it is indeed and if her seizures are changing form or are we dealing with something else. We all have myoclonis jerking when we fall asleep sometimes. It's that sudden twitch you may feel when you're drifting off to sleep but this is not epilepsy. Macayla, on the other hand, has multiple twitches for an hour or two and even some after she falls asleep. She has been waking up at 2:20 a.m. every morning and it takes until about 3-3:20 to get her back to sleep because of the twitching. The jerking also follows patterns sometimes. The other night she would do it in a sequence that started in her arms, then her legs, then her left shoulder, and then she would turn her head. She repeated this pattern about every five seconds for thirty minutes. The next night the pattern would be her arms then her legs at about the same interval. Jenny and I know that you don't want to be on the receiving end of one of those leg jerks! Macayla can kick!
Maybe her seizures have not been down like we thought, but that's what the EEG can tell us.