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.

Heavenly Minded...A Lot of Earthly Good

I've heard the cliche that people can be so heavenly minded that they are no earthly good. There, of course, is some truth to that from the perspective that people can be so wrapped up in doctrine or the spiritual that they never let it inform their ethics and interactions with the world. But, C.S. Lewis stated that we must be aware that we never meet any mere mortals. Everyone we meet has an eternal destiny and each day, each decision, they take a step closer to one destiny or the other. We also influence people toward one destiny or the other. He basically says that if we were able to see now what a person's eternal state looks like, they would either be the most hideous creature imaginable or they would be a creature of such beauty as to be awe inspiring. All that to say, when we become truly "heavenly minded" we become the MOST earthly good.

By "heavenly minded" I mean to seek the kingdom of God first, to learn who He is and what His ultimate and eternal purpose is for us. Knowing that God is real, that there is a heaven and hell as eternal states and not just present ones gives us the perspective needed to be active in the world. Our Sunday school class from Edwards Road Baptist Church in Greenville just came over in mass and in a few hours knocked out multiple projects around our home. Projects that have been hanging over our heads for a while but we have been unable to get to. They did this out of love and it is a love they obviously get from Christ. We appreciate and love them so much. We miss them because we live 45 minutes from the church and usually can't make it there every Sunday. They are an example of how Christ has called His Church to serve and love each other. It is by that love, He said, that the world would know we are His disciples. 

Over and over the New Testament demonstrates that the cross of Christ and its eternal ramifications is the impetus for serving, loving and living today. For those who put their faith in Christ, their eternal destiny C.S. Lewis spoke of is settled and their daily life on earth has direction. We see that repeatedly demonstrated in our church family. We pray that we will not let opportunities slip by us to be "heavenly minded" with others so that we can be the most earthly good. I pray that we in Christ's Church will not let opportunities pass to influence others toward an awe inspiring eternal destiny in the presence of Christ. 

Jacob's Valentine's Day Advice

After 102 days of kindergarten, Jacob is now ready to dispense some great relationship advice and just in time for Valentine's Day. (If it helps, feel free to play some Barry White in the background as you read this.) On the way to school this morning, Jacob shared with great concern that a young girl in his class said she hated him and another boy who were playing together. He said he attempted to discover why, but she would not say, only that she hated him. But Jacob then reveals that he believes she was just angry because he was playing with this boy and not her. He then said, "You see, she's attracted to me. But I don't love her. I think she has bad luck and I don't want to be around people with bad luck." He goes on to say, "She keeps asking me to marry her but I told her she has to wait until she's a grown-up, but she keeps asking. But Dad, I think I know why you shouldn't marry someone who is bad. Samson in the Bible married a bad woman and she cut off all his hair and he lost his strength. So, you shouldn't marry anyone who is bad."

I don't think Jacob was insinuating that this girl in his class was bad. With that aside, his advice is as follows:

Just because someone is attracted to you doesn't mean you have to like them. (In other words, both people have to be on board in a relationship, or it is obviously not a relationship.)

Be a grown up before you get married. (In other words, be mature.)

Don't marry a bad person, they will cut your hair and you'll lose all your strength. (Or, a bad spouse will suck the life right out of you! Besides, who wants a bad haircut?!)

So, now none of us have any excuses for being in bad relationships! The "Ladies' Man" has spoken!

New Pictures

We have some new pictures in the image gallery now. We will have more on the way soon, but I'm not exactly efficient at getting those to the website. I'm really busy working on video stuff right now anyway. Having extra nursing has helped me accomplish more, but I almost don't know what I want to work on first. I've been so used to letting things slide that I'm having trouble remembering what needs to be done around here!! Never fear, I have a wife and mother-in-law to remind me ;)).

Macayla is doing well and has continued to have a working bladder. Her airway has been a bit jumbled this week with secretions, but she has done well over all.