Nursing Improvements

This month, we have had more nursing help than ever before. We have up to 44 hours of nursing care approved each week and have never had that much coverage. But Macayla is a very different child now from last year. We have been training new nurses with Macayla this month, which is hard, but we have met some really good folks. Macayla is in need of constant monitoring for when she chokes and needs suctioning. It is really helpful to have an extra set of hands, eyes, ears, and yes nose, to watch out for her. Her bladder has been working fairly well for a couple of weeks now. So, we are thankful for the help and for Macayla hanging in there.

Jacob has an update on his page now. He has been a neat kid lately but he has gotten in trouble at school more this month than any other. Don't worry, it is small stuff, but I blame the girl. You'll have to check his page to understand. Thanks to all who have been praying and supporting us in various ways. We love you all and thank God for his grace and provision through you. 

Things Are Working...For Now

Macayla had a pretty good week last week. It started on Sunday in Greenville at our home church, ERBC. There so many of our friends came around us and prayed. Then several from our church family here in Anderson, ECF, came over on Tuesday and prayed for Macayla. They even brought dinner! The rest of the week Macayla has done well with her secretions and we have had to use catheters only a few times. She has done much better. But that is what we expect. Some function or ability fails only to come back for a while and then it will be lost again. It is the nature of the disease. But we rejoice in each day. We rejoice even more when they are good days. We appreciate all of the prayers from our church families, our family, friends and those who read this that we have not met. Thanks to all. 

Good Days, Bittersweet Memories

Macayla has had a good couple of days. She has had pretty good bladder function, not perfect, but good. She has less secretions and even went to school today. She is worn out it appears, but fairly happy. Hopefully, the next few days will at least stay in this trend. She gets to see her GI doctor and nutritionist tomorrow for a check-up. Hopefully we won't add any calories to Macayla's diet. She is already a heavy load to lift.

Jacob has been adjusting back to school. He seems to be back in the swing except he is tired when he comes home. He apparently devotes a lot of energy to focusing at school and when he gets home he cannot stay focused on much. The teachers tell us he is a great student, so he is only this way at home. He got to go play at the park today after school and I think it helped him let go a bit.

I have been scrubbing through some old home videos I shot back in 2005. We got the camera then to try and video a seizure for the doctors. If there was a market for documentaries on Macayla's seizures, I'd have it cornered. It seems that my camera is always looking for a seizure. Anyway, we played the first tape back on Macayla's television so she could hear it. She really listened and laughed appropriately. We forgot so many things. We forgot that Jacob (2 years old at the time) could not say Macayla's name so he called her "La la". We forgot how Macayla would act out her falling spells. She would say, "Whoa, whoa, whoa..." and sway from side to side. She loved to wear her ballerina outfit and run around in it. Jacob loved to kiss everyone then just like he does now. I have shots of Macayla looking back at me in the rearview mirror and laughing. The beach, the lake, birthdays, horses, cats, dogs, flowers, butterflies, Disney World, tea parties,... at this point it seems impossible to edit any of it. Unfortunately, they don't make DVD's hold that much video. So, I will have to edit.

 But we will always have the tapes and the memories. My favorite memory I saw multiple times on one tape was Macayla looking at the camera, sometimes up close and other times at a distance, and calling, "Daddy!" That will not be edited at all. 

If We Could Just...

Well, Macayla had a good day Tuesday with secretions and did not struggle to breathe as much. She even wet her diaper on her own almost all day. The only problem was she never emptied her bladder. But she made up for that on Wednesday! She was number one at doing "number one!" But we had to suction her more often as she kept choking. It wasn't the worst day for choking, but it was interesting how her throat worked well one day, but her bladder was only at 50% and the next day her bladder worked well only to have her throat at 50%. If we could just get them on the same schedule, as in both the throat and bladder working well at the same time. We have had plenty of days where both are at 50% or worse. If we could just time things the way we want, then everything would be fine. Right?

Some Bladder Function

For the last two days, Macayla has had some bladder function. It appears she needs help the most in the morning, but she has been able to go on her own during the day. For months now, she has almost always woken up with a dry diaper. It seems her bladder did not want to work until she was awake. So, this is not a new trend. We have tried to schedule her emptying to keep it close to what it was, but when she goes on her own, it throws off that schedule. 

The secretions in her mouth and throat are more than ever. We find ourselves having to recharge her portable suction machine almost every two days because we use it so much. Before December, we were maybe charging it every other week. Throughout the course of this disease, Macayla will change and lose an ability only to gain it back later and lose it again. So, we wouldn't be surprise if she gets catheter free for a while and then change back again. But changes like this make us as parents reevaluate our plans and what interventions we will do or not do as systems like the bladder shut down. We have to weigh out her comfort and risk-benefits of each step. 

The Hope Within

Recently, I heard Chip Ingram give an explanation of what it means when Christians speak of hope. He explained that the word "hope" is not used by Christians to mean wishful thinking or that they are guessing as to what will happen. Christian hope is confidence in what is to come. It is like the knowledge kids have about Christmas. Christmas is coming and they know Christmas involves toys. It is not wishful thinking to believe that there will be a holiday called Christmas. It is coming and that coming stirs up hope in a child. Of course, this is not a perfect example. The perfect example is Christ. Israel hoped in the certainty that God would send a Messiah and God did in Christ Jesus. Likewise, Christians hope in the certainty that all who have a relationship with Christ have the question of eternity settled. But even more, we have hope in the certainty that Christ will come again and put an end to death for good. At the cross, Christ made death but a shadow for those who believe. At his second coming, death will not even exist.

That is the source of our hope for Macayla. She is now a victim, like we all are, of a fallen world where death and disease destroy. But because of Christ, these are but shadows now and our hope, our confidence, is in the fact that she will be whole again. It is easy for that hope to be dimmed a bit when we are reminded of the real suffering she experiences. Her bladder beginning to fail, her tongue losing tone, and her frequent gagging and inability to breathe are just some of the reminders of the disease and the death it brings. When we call death a shadow because of Christ's cross, it doesn't mean that death became less real. It means that eternity with Christ is an ultimate reality and our temporal sufferings and death now fade in comparison to this eternal and ultimate existence. So, when we are reminded of the harsh reality of Macayla's disease, we can also be reminded of how infinitely more real her eternity is with Christ. It doesn't mean we are not saddened by all of this. We are sad and we are joyful. Ultimately, in the end, we will be joyful.

Catheter Duty

Well, Macayla has needed a catheter every 8 to 10 hours. Since Tuesday, she has only voided once on her own. Every other time it has been with the help of a catheter. Jennifer is a nurse and is used to these things, but I'm am not so much. I have had a crash course on it this week as Jennifer will be at work the next couple of days. But she is a good teacher and it has not been as bad as I thought. Usually, as soon as we get the catheter in good, she starts voiding and pushes it back out. 

Macayla has been quite happy today and her grandparents gave her a good and much needed bath today. We wish there was a way to make this whole process more comfortable on her and cut down on irritation from the catheter. Though it may not be as bad as we think, considering she slept through it a few times.