Two Weeks and Counting...Oh, never mind!

Macayla went to therapy on Wednesday, two weeks since her last seizures. During therapy, Macayla turned pale/gray and the color left her lips, but she did not seem to be having a seizure. We were thankful that the two week mark came and went without a seizure. Then on Thursday, Macayla had one at school just before dismissal. She threw up and it lasted thirty seconds to a minute. When I got there she was asleep and stayed asleep for 6 hours. That was without Diastat! She then had two more last night and one more this morning. The neurologist saw a video of Macayla's last episodes and suggested that it might not be seizures but reflux. We are having a hard time understanding how reflux could cause all of the symptoms we see. It certainly could cause the breathing problems, vomiting, and rigidity. However, we want to learn more about it and see how it could also cause the lethargy afterwards or the "epileptic cry" she has had before some of the episodes. We also are wondering if it is both reflux and seizure activity together where one triggers or leads to the other. For now we have increased her reflux meds and experimenting with slower, more continuous feeding.

School

The kids have done great with school. Macayla smiles a lot when we talk about it and seems to enjoy it. The teachers say she is still responsive and smiles. Jacob has adjusted great. Keep a check on his page soon. He is excited about school and I just wish that excitement would last the rest of the time he gets an education. His teachers are really nice and they have great ways to get Jacob motivated.  Jacob's classroom is directly across the hall from Macayla's. We are fortunate to live in an area where the schools are this nice and full of great people. By Anderson real estate standards, we don't live in the "most desirable school zone," but we have had a great experience here. I think if people here saw the condition of schools in places like New Orleans or even in Allendale, SC, they would realize what a blessing we have in our schools (even the "less desirable" ones in the real estate market). We have great teachers and great facilities. It's not perfect, but opportunities abound for the kids and almost all of the teachers we have met truly care about what they are doing. Most of them we met are driven by their faith in Christ. Even though they can't openly express faith in a public school, the values and love still shines through. That is one benefit of living in this area. We are fortunate to be where we are and we are thankful.

Summer's Over

We spent the past week in Pigeon Forge with Jennifer's parents and my mom. It was a nice get-a-way and nice to be away from the house and Jennifer's work. Jacob and Macayla got to feed some goats and deer among other critters at a petting zoo. (Look for pictures soon!) Macayla did have her bout with seizures while we were there, but it was a good trip overall and a blessing. Jacob got some great quality AND quantity time with us as well. 

But this week, the kids go back to school. I admit that I am very ready for it. Having both of them home all summer has been great but it is hard work. The other day, I realized how wrapped up I have been when I looked at my journal and blog. It has mostly been event recording and very little reflection on what God has been doing in our lives. We have been adjusting to these seizures over the summer. We have been taking multiple trips. We have had plenty of family events and plenty of fun. Unfortunately, I have had little reflection on all of it. This morning we went to worship this God I have been distant from. We went to worship the Father I have ignored as I have stayed wrapped up in my own little world. 

This particular Sunday, they brought the children into worship during the music and they sat down at the front. Jacob was with them and they were clapping to the music. Jacob was off beat with his clapping, but it was earnest clapping! I suddenly realized that maybe I'm not as sophisticated as I like to think. Maybe as an adult, I can keep beat with a song better than a five year old. Maybe I can accomplish commendable things (humanly speaking) in a job or as a stay-at-home parent. But when the Father looks down, does He see me the child acting earnestly, but still off beat? Are all of our accomplishments simply child's play in this passing summer? I think when the full veil is pulled back and all is fully known, we will be amazed at what accomplishments we once thought so important were mere rubbish, while the things we considered small will be the most significant. One day, as Jacob grows more coordinated, he will clap in rhythm with songs better than he does now (unless, of course, he takes after me!) but I hope he claps just as earnestly as he does now when it is for the Father in heaven. I hope that in all my business; in the midst of all the things tugging for my time and energy, that I will do them in earnest acknowledgment of the Father. I pray that I will do them in earnest for His glory. Summer is over, but I pray it is the start of a fresh season of worship and warmth with the Father. 

Caught On Video

Macayla had five seizures over the period of about four hours yesterday evening. I was able to catch the first one on video and as I was uploading it to my computer to email it, she had another. We gave her Diastat to stop them, but it did not work. She had three more over the next three hours and never once calmed down. It took a while to get a hold of a doctor, but they said we could repeat the Diastat three hours after the first dose. The second dose seemed to work and she slept through the night. 

Now, I have a little over a minute of Macayla's seizure on video and was able to focus in on some traits that may help the neurologist see more of what is going on. But now it won't go through on email because the server at the hospital is not letting it go through. Computers hate me! It's not that big of a file, yet the server won't cooperate. But we'll get it figured out and the good thing is that the seizures could not hide from the camera. 

Illusive Video

Macayla and Jacob did well over the last couple of days as Jennifer and I were away. They stayed with Jennifer's parents while we went to Charleston for a wedding and to celebrate our own 10 year anniversary! Charleston is where we met and that means it is a town rich in mushy, ooey-gooey memories for us. It was a great getaway and we are thrilled that the kids did so well. They always do for grandparents. Of course, Macayla had a grand mal a few hours after we got home, but it was shorter than the others and she kept her oxygen levels up better than usual. I didn't even have time to get my video camera out. 

We want to catch these on video so the neurologist can see it since she will never do one on an EEG or in front of him. Last night, I ran and got the camera and as soon as I walked into the room her seizure was over. So, I put the camera on a tripod in her room and pointed it at her in the bed. I expected that within 45 minutes to 2 hours, she would have another, but no! She went to sleep and didn't wake up until this morning. I think a camera is the best anticonvulsant we could have our hands on right now. She simply does not have seizures in front of a camera!! I plan to keep the camera on her all day today in the ready position. It would be surprising if she did not have another one today since the pattern has been to have multiple seizures over the course of a couple of days. Hopefully, we can catch the seizure on video if she has any.