Half Way Through the Night
Well we’re getting closer – Chase agreed to let Carol try again with the condom catheter last night and it worked for about half the night. It apparently came off around 1:30 am so he got us up to change him and from there out it was every hour or so. That half night of solid rest was quite promising; however we still feel like zombies (perhaps more so), although we’re very optimistic it will get worked out soon. We’ll be receiving a package today with 8 different kinds of catheters and several other kinds of adapters, adhesive strips, etc. so something is bound to work, as long as Chase lets us keep on trying. Hopefully by the end of the weekend, we’ll have this figured out and can stick to a plan that works with some stability so we can all keep our sanity.
Chase also seems to be doing well with his integration at kindergarten. During the Cranbrook Open House last night, they played a short video of the kids singing songs and he seemed to blend right in (backpack and all) singing away and having fun with his classmates. The most recent milestone was getting him to stay until 11 am, through the snack break. Apparently when his teacher gave Chase the snack that was sent for him (as opposed to what the other kids get), one of them asked, “why does he get something different”, to which Chase responded, “because I eat organic”! Well, that seemed to suffice for a reasonable explanation (Chase obviously gets it), and hopefully all will continue to go well and seem like “normal”. Now we just need to get enough options and have them planned out so that it’s not a daily chore.
The next milestone that we’re shooting for is to find a way for Chase to join the class for Physical Education. I’m working on a way to accelerate the rate of his dosage delivery cycles and plan the timing just right so that during the half-hour he can be disconnected and run around with the others. This should be manageable with enough forethought and we’re certain it will only help to increase his desire to stay in school. Chase is very close to the reaching the maximum targeted dose level of anti-neoplastons (350 ml per dose x 6 per day), which we should get to by Sunday as long as he continues to tolerate it well. So far, still no real side-effects, which is a miracle in itself. He’s blown through all the incremental steps without any set-backs and once we’re there, we can establish a pretty solid / stable schedule as well as look at approaches to get him off the remaining dose of decadron (steroid). That would be huge, because most patients complain about this as the cause of the worst long-term side effects.
We’re continuing to pray that Chase’s regimen can stabilize for him and everyone can get to that place of “normalcy” for the time being. We’re extremely close now and with the momentum going, we should be there by early next week. In the meantime, we’re doing our best to keep him happy and we’re looking forward to tomorrow’s soccer game where he can “let loose” for a couple of house unencumbered, as well as the prayer service on Sunday night at Beaumont (5:30 – 7:30 pm) – thanks again to Kathy and Dawn for pulling this together!
Lots of love and gratitude,
John & Carol Sammut
Chase and Barbara Ann
Chase also seems to be doing well with his integration at kindergarten. During the Cranbrook Open House last night, they played a short video of the kids singing songs and he seemed to blend right in (backpack and all) singing away and having fun with his classmates. The most recent milestone was getting him to stay until 11 am, through the snack break. Apparently when his teacher gave Chase the snack that was sent for him (as opposed to what the other kids get), one of them asked, “why does he get something different”, to which Chase responded, “because I eat organic”! Well, that seemed to suffice for a reasonable explanation (Chase obviously gets it), and hopefully all will continue to go well and seem like “normal”. Now we just need to get enough options and have them planned out so that it’s not a daily chore.
The next milestone that we’re shooting for is to find a way for Chase to join the class for Physical Education. I’m working on a way to accelerate the rate of his dosage delivery cycles and plan the timing just right so that during the half-hour he can be disconnected and run around with the others. This should be manageable with enough forethought and we’re certain it will only help to increase his desire to stay in school. Chase is very close to the reaching the maximum targeted dose level of anti-neoplastons (350 ml per dose x 6 per day), which we should get to by Sunday as long as he continues to tolerate it well. So far, still no real side-effects, which is a miracle in itself. He’s blown through all the incremental steps without any set-backs and once we’re there, we can establish a pretty solid / stable schedule as well as look at approaches to get him off the remaining dose of decadron (steroid). That would be huge, because most patients complain about this as the cause of the worst long-term side effects.
We’re continuing to pray that Chase’s regimen can stabilize for him and everyone can get to that place of “normalcy” for the time being. We’re extremely close now and with the momentum going, we should be there by early next week. In the meantime, we’re doing our best to keep him happy and we’re looking forward to tomorrow’s soccer game where he can “let loose” for a couple of house unencumbered, as well as the prayer service on Sunday night at Beaumont (5:30 – 7:30 pm) – thanks again to Kathy and Dawn for pulling this together!
Lots of love and gratitude,
John & Carol Sammut
Chase and Barbara Ann
posted by John & Carol Sammut at 5:50 AM
1 Comments:
John - I've got to say, now is the time when you need to be sure you have extra help, even if it's a nurse for a couple hours so that you and Carol can get some rest. This is a long exhausting piece of work and you won't do it by yourselves at home. In the old days people would hire live in help - nurses, housekeepers, major domos, factotums, whatever, and now the time. tricia
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