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.