Update #117 on Kevin

I currently have a beard. I know, I know, you’re thinking…it’s been this long and he’s writing about facial hair? Hang with me, I’m going somewhere here. I don’t always have a full beard, but in certain times in my life, I have grown one. There have also been times where I grew it just because, but most often I have grown one when something big and difficult is going on in our lives. I don’t think I have ever told anyone this before. It’s like my own little nazarite vow with God. I’m not pledging anything to God by growing, except maybe allegiance to Him. It’s the idea that I can relax and let Him be God and take care of not only me, but with any situation that I am confronted.


Kevin’s been home at his house for two months. While these have been some very stressful months, they have also been very good months. How do you find goodness in a difficult situation? Well, I do think it is very difficult, if not impossible to do this without God. Relaxing in Him, and letting God be the one responsible is the ideal, which is the daily struggle. We don’t always relax, in fact often we worry and fear and cry and get angry, yet it the times we do trust and truly relax in Him are the best times. Those are the times that we yearn for.

Since the last update, we have had nursing approved twice for two week periods. Last Friday, we got approval for one month of eight hours per day nursing. This goes until March 13, 2010. We will request more as that date approaches. We have one main nurse five days per week and another nurse here on the other two days. They are both answers to prayer for Kevin, as is actually having the nursing at all.

Physical and Occupational therapists have both continued coming helping see where Kevin’s limits are with the tasks that he is able to endure. Sitting assisted on the edge of the bed has increased from a 20 minute activity to as long as 65 minutes. This tasks is actually limited by those of us taking turns to assist Kevin. Several professionals have indicated that Kevin might benefit from a communication board. This would be something that Kevin could look at and respond to our questions since he is still not communicating verbally. He could look at a certain picture to answer yes or no, or something of that effect. We are hoping that we can find the right Speech Therapist to work with Kevin.

We were able, thanks to those of you who responded, to fix the house needs in order to reinstate Kevin’s new home insurance.

After three months of struggling with Kevin’s medical insurance, they finally approved Kevin’s wheelchair. It should be here by the weekend. With it we can do all sorts of new stimulation from taking him outside to positioning in the chair and field trips.

Today, we took Kevin to his pulmonologist (lung doctor). She was one of Kevin’s pulmonologists at Meadorbrook. She thought Kevin looked very well cared for as well as looking more alert than the last time she saw him. She gave us a great deal of time and attention as well as changing out Kevin’s trach tube right there in her office. She wanted to do it now, since it had been a little longer than you would normally want to leave the same one in. He has had this one the entire time he has been home, plus a week or so prior. It went really smoothly, except that taking it out caused bleeding. Apparently, the longer a trach tube is in (and not changed out) makes it more possible for the skin around it to attach. She remained calm and took care of Kevin’s bleeding. After stopping the bleeding, she said we might see more blood get coughed out in the next 24 hours. He coughed a little after we got back home, but all night so far (from 11pm to 4am) he has only coughed once.

She also changed out Kevin’s trach to one that would make it easier to cap and allow him the opportunity to make vocal sounds when possible. This means now we have to clean out the inner part of his trach tube rather than inserting disposable ones.

Thanks to those of you who have brought lunch or dinner by for our family. It has been extremely helpful. Also, thanks again for all your prayers, we appreciate them tremendously.

Thanks,
Matt, Angie and family
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