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.