Upcoming Prayer Service

Sorry for the long pause between updates, but there are so many things going on at the same time as we work aggressively to get Chase re-integrated into a "normalized" schedule (as well as ourselves) that it makes for very long days and short nights. Some of the milestones in the past couple of days were selecting and installing a new water filtration system (whole house filters and separate drinking water system), learning how to make different types of smoothies and juices (including a using a more professional type of machine – Vitamix), getting a second fridge for all the vegan food we’re having to prepare for Chase, etc. Fortunately, most of these have been successful efforts – for example, Chase and Barbara are really liking some of the latest concoctions (not detecting the flax oil, soy based yogurt, or emergen-C supplements mixed in); that’s a real victory as it makes the job of coaxing them much easier.

In addition, we’ve really been making progress on the snacks – this has been a perpetual struggle to find things that look like what they’re used to eating (and what other kids wouldn’t be compelled to add to the confusion by giving weird looks at). A couple of recent discoveries include “Gourmet Tings” that actually look almost exactly like cheetos and taste like them too but are actually natural corn meal and spelt pretzels. We also learned how to make home made popsicles from fresh unsweetened fruit juice and yogurt– these have been a big hit and will go over great as a snack after the soccer games as well.

The one area that we haven’t been able to succeed with yet is finding avenues to get Chase to sleep soundly through the night. Because of the high volume of medicine through his IV bags and his associated constant thirst (he’s now up to about 1 ½ gallons of water per day), this has caused the frequent urination to continue throughout the day and night. We’re not giving up yet – I recently located pediatric condom catheters that appear promising and aren’t invasive at all. Now the struggle is just to get him comfortable using them. I’m certain that as soon as he gets one solid night of sleep (and likewise for us), the relief will be enough for him to agree to continue using them. However, he outsmarted me on the first attempt. When I showed them to him a couple of days ago, he just laughed and said, “that’ll never work”. I replied, “you want to bet” (my first mistake). He said, “yeah I’ll bet you $100 that won’t stay on”. I can’t believe I actually fell into that trap – in hindsight, I should’ve used reverse logic on him and said, “I’ll give you $100 when YOU figure out how to make it work”… instead, by the way he set it up, there was a built in incentive for him to prove that it wouldn’t work and sure enough, he made me fork it over the next morning when he woke up wet because the tube came apart (which if felt guilty for and complied since it was a huge milestone just for him to try it).

I’m now trying another approach, offering a Jeepers wristband (all the rides he can go on in a couple of hours at the mall play area, worth $10) for each time he gets through the night. This was enough incentive for him to give it another try tonight and I was quite hopeful. It seemed to work quite well for the first couple of hours but then he woke up a bit slap happy (laughing about something or another – probably getting a kick out of his gas talent again from all the veggies) and then he called me in and said he didn’t want to keep it on, even for the wristband reward (so it’s back to the drawing board). We’ll have to find something that he wants badly enough to give him the incentive to stick it out. This may seem like beating a dead horse or belaboring a small point, but after several weeks of sleep deprivation, constant interruptions, including blankey and PJ changes with many loads of laundry, it’s gotten worse than the days of having a new born and I’ve learned from experience that I don’t do well with that condition (after successfully overcoming sleep apnea myslef, I’m not about to go backwards). I’m determined to solve this one way or another and I think we’re close – we now have a system to use that is well-designed with the right adapters and a velcro band to hold the tubing snugly in place, so and it’s just a matter of finding the right reward / incentive to get Chase over the hump.

We’ll keep brainstorming while we add this little (“big”) milestone to the prayer list. Speaking of which, some of Carol’s friends (Dawn Sunderlik and Kathy Conover) are organizing a prayers service for Chase:

Date: Sunday, October 9th

Time: 5:30 - 7:30

Place: William Beaumont Hospital Royal Oak, MI - Spiritual Center (3rd Floor - Central Elevators)


We’re looking forward to the get together and harnessing the power of our collective prayers. Chase is also continuing the progress on the school front and should be up to the ½ day session (up to lunch) tomorrow if all goes as planned. He’s been warming up to the setting, beginning to make new friends and getting along well. He’s even had a couple of play dates and more planned – this is making a big difference in his attitude, as did the soccer game (which he’s looking forward to again this Saturday).

Thanks again to all for the support and prayers!

Love,

John & Carol Sammut
Chase & Barbara Ann