...this long? we guess it has. To all of you that we saw this weekend for the first time in many years and you knew the date of our last update off the top of your head, thank you for the encouragement and sorry for not posting more.
We have been very busy, and much of that revolves around mommy not doing as well as we would like. She is completely dependent upon those around her for just about everything. She is wheelchair bound and requires a lift in order to get out of the wheelchair to the bed or the potty. She had a catheter put in the end of June so that she could go with the family to take the girls to camp and that has worked very well so we have left it in. Now we only have to get her out of the wheelchair for bms. The waking up or going to bed routines takes about an hour each and sitting her on the potty takes about 30-4o minutes.
More important than what she can't do is what she can. As is expected with her disease, she continues to remain completely alert mentally. She knows everything that is going on around her, can provide direction to the kids and enjoys watching them play. She is able (though barely) to use her right hand to control her wheelchair and to eat and drink - as long as the glass is only 1/2 full and she doesn't have to do any cutting of food. If someone didn't spend time with her and just talked to her for a few minutes she appears to be doing much better than she is. This is in large part do to the pretty extensive pain management that she is on but even that, unfortunately, is not always enough and she is in a lot of pain which she doesn't show at all.
What she is not able to do is the most difficult on all of us emotionally. Yesterday we tried a few hours at the local county fair. Fairs are NOT made for wheelchair use and she was constantly having to work through tight spaces, uneven terrain, people not paying any attention to her, etc. etc. etc. It was like daddy and the girls at the fair with mommy "outside" just watching and not getting to participate in what the girls were doing. It made daddy very sad.
We went camping with NAFA in June and we expected it would be our last time camping as taking her hospital bed, lifts, potties and all of the misc. medical stuff is very difficult. We are going to try it again though in the middle of August. A new church that we have been going to on Saturday nights has a family camp at the beach and we are hoping to try and do that.
As you can imagine daily life (let alone camping or outside activities) is very difficult for daddy to keep up with taking care of mommy, the girls, the house and still try and get some work done. Throughout most of June and July we had a good friend Genia and her brother Chance come down and stay with us which really REALLY helped. Last night Cousins Annie and JJ showed up and are going to be staying on and off through August. There are no words that can tell how much help their being here is. We are trying not to be scared to death about what happens in September, although we do not that those days will take care of themselves. We know this because God has promised it so - Matthew 6:25-34 have been "beat" into our heads over the last couple weeks, coming up again and again by multiple unrelated sources.
Sarah absorbs more and more of what is going on and we think that may have something to do with some small behavioral issues we are having with her. She is turning into a teen ager (at least by behavior) at the age of 5!
Rebekah continues to be blissfully in her own world and is doing as best as she can be expected to in that world. We are concerned about the fact that it appears she will not have any adult teeth but that is our biggest concern right now (which is in and of itself a huge blessing!) She starts extended school year (summer school) classes tomorrow for a few days a week.
Pray for continued strength and support to get day to day activities done, and for daddy's work to continue to be the kind of workload that he can both handle and which pays the bills.