Sunday, July 30, 2017

July 21
I am always torn between lovin' and kissing on Eli all the time, and avoiding it because of germs. I never know quite what to do. I don't want to miss any opportunity, but I don't want to put him at risk of sickness either. Well, please pray that I didn't choose wrong yesterday! Hg started with a high temp and cough yesterday, so Vic took her to the doc and she has viral bronchitis!! And today, I'm starting with a cough and chest pain, no fever yet. I did a lot of lovin' on him and Caleb yesterday, and Abbey ate after me. This surely would put him in the hospital if he gets it at her level. Her temp is 103 with meds, and he would never cough as hard as he would need to in order to keep his lungs clear. I am very fearful of this. If I got it that easily (I was only around her mostly on Wednesday, Vic was with her yesterday, thinking we were keeping me "clean".), we will all have it. So, this mask is my accessory today, and Eli has one, too. Hoping it's not too late.

July 23
We are feeling pretty "poorly", as my mom used to say, at the Williams house. Hg continues to feel really bad, can't detect any improvement, I have gotten worse, and Eli threw up this morning right after he took his meds, so we don't know if we need to give them again or not, don't want to get in another seizure situation, calling the doc now. I'm suspecting Caleb is getting what hg and I have, but I'm highly sensitive to each little time he clears his throat. So far Vic is juggling it all, and this is one situation where Abbey's reclusivity might protect her. Pray that Hg turns a corner, she is miserable, and that goes against her nature to feel that way, and to be away from others so long. She loves being with friends and doesn’t like missing out on things, especially as summer is coming to a close, so it's getting to her a bit I suspect Eli’s nausea is from progression, so we need to get well to deal with that, and don't need Vic getting sick, evidently it takes a while to get over whatever this is.

July 24
We are hanging in there. Yesterday was the worst day for me and Hg, and Caleb started running a fever last night, so he is now quarantine in his room, with his worst day to come. Vic, abbey, and Eli so far doing ok, but if Caleb's got it, I don't see how any of them will 
miss it. And, Wow! Whatever this is, is a bear. Today, my temp and general body aches are finally controlled by meds, but if I let three hours go by without anything, it quickly jumps. Same with hg. She is still struggling, but I suspected that she was partly fighting a sinus infection by now, so she went back to the doc, came home with more meds. Eli has been fairly chipper for him today, even went with the wheelchair to Lowes with Vic to, not just get out of the house, but to get off the couch, since he doesn't seem to be sick, and seemed to feel decent. We also made Abbey tag along to get her out. Here's a little video of Eli talking with Vic about a Three Stooges episode where the stooges are union soldiers dresses as confederate soldiers. You probably can't understand him, but you can tell how much he loves the Three Stooges, and that he feels pretty good.

July 25
Hg and I are feeling better, Caleb is quarantine with it, but so far Vic, Eli and Abbey seemed to have escaped. Eli is starting to struggle with several things that would indicate progression: slurred speech regularly, intermittent incontinence, fatigue, lack of appetite or thirst, further instability in walking. We are starting him on a steroid that we've been holding until the last minute, just because once you start it, he can't come off of it, but it can
provide some temporary relief from these symptoms for him by reducing inflammation. He is at "therapeutic" levels with the one chemo. We have not heard from the lab testing, and his doctor is out of the country until Tuesday. (sigh) we have an appointment with her on Wednesday, so pray we make it, and that it will matter.

July 26
Lots of school supply shopping going on right now. Me? Yes, I bought a set of sheets for my 12-year-old's hospital bed that was delivered to our home today.... You're Welcome.
Eli had a rough morning. He's settled now, about to eat, hopefully. I learned today that our appointment in Atlanta is only a check-up with the NP, we will not see the doctor. I am disappointed and sad to hear this. He sees a nurse and a doc multiple times a week now, so I will not be taking him to Atlanta for just a chec-up. So, I guess, we are just waiting
around for someone to call us with relevant test results. That's about all we can do at this point. He will continue on his current chemo until he can no longer swallow.

July 27Eli is having a very good evening, after sleeping most of the day, and being a little "distant", I guess, this morning, wouldn't talk. But he was perky, and wanting to eat when he did wake up, and has been playing video games, and is actually working on a Lego. He is talking voluntarily, not just answering yes or no. So, we are enjoying a bump from some medicine changes, and we will take it for as long as it lasts. He has lost more stability in his legs, although when I work him in the bed, he has good strength and control, just not with his full weight. But overall, minus the six-hour nap, he's had an excellent day, and I am humbly thankful for the prayers. They carry us daily.

July 30Eli (and we) have enjoyed a nice couple of days thanks to the bump by the steroid. But, he is struggling more this morning. The last couple of days, he has been playing lots of legos, and video games. Been joking around with the others, and even got up and walked in the kitchen to tell me something one day. He got in his head yesterday that he had to go to TRU to get a lego set as his reward for going to Atlanta to the doctor on Tuesday. (Last week, I called Atlanta to tell the nurse that, as much as I do love nurse practitioners, at this point in our journey, to gather him up in his current state and travel to Atlanta for a check-up with a nurse is just not practical or needed. Unless we see the doctor at our
 appointment, and more specifically unless we see the doctor about results from the tissue analysis, then there is no reason for us to come, so cancel our appointment. Of course, this was left on a voicemail. So, they called us to let us know they had moved us to Dr. Aguirella's schedule, and I said, that was great, but unless that appointment is productive in discussing test results - in other words, we do not have time, nor is it worth the wear on him, to have an appointment for us to talk about making an appointment to talk about results - then we would not be coming. So, we left it at, they would ask Dr. A to call us on Monday before we come, so I hope that actually happens, and that she actually has something to talk about.) So, he was determined about going to TRU, so we loaded him up and he did fine, but he seemed like he was getting tired. He had a good night, and wanted to go to church this morning. Vic and the kids went on for class, so I got him ready, but when I got him up to walk to the car, I could tell he was struggling more with his right side, and he was leaning sitting in the car toward his right side, and closing his eyes some. And, he was not talking very well. So, we pulled in to the parking lot, and just drove right back out to come home. He's been sleeping since then in this very quiet house with everyone gone. So, that's where we are at. This picture is from this morning, he was all ready with his little spiffy bow tie and everything. Pictures can be so deceiving.

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