Peggy, John and baby Jenna Mato came by around noon and visited spent some time with me -she’s such a good baby! Thanks for letting me meet her! She looks just like Jake! Thanks for letting me hold her! Thanks Julie Wang for visiting, too! It was great to spend time with u too! Hopefully, next time Julie Sato feels better to join us! Thanks, JulieW for the friendship bracelets! I will cherish them and share them with my friends! Now, I’m gonna rest till dinner! Hope u have a great week!
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PHOTO UPDATE:
Satomi and baby Jenna
Hi! I wrote a blog this morning and accidentally discarded it! My mind is not all here right now so when it asked me to “save, discard or cancel” i pushed “discard” by accident and lost it – I just mentioned how this week was gonna be – kandice off this week from school for furlough days going to Childtime with J – should b fun! Jill back to reg pre-K class and have fun with K there -they will probably have fun together! I don’t have too many doc appts thanks goodness now that rad is over – just need to take dilantin blood level to see how much swelling in my brain from steroids! I’m gonna start hospice care – but ok with it – just want to be comfortable! Of course, my mom doesn’t understand but I just want to get better but not if I have to suffer! I put my dad on hospice in 2009 but was able to take him off with his doctor’s help but when both of us were in the ER at the same time, my sister had to make the cAll – he was sick and now he is in a better place – with JC without O2 in heaven! Hopefully u will all agree – this is no way to live life and hopefully I will get better soon! Keep praying for me! Have a great 2011!!
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Today will be a day of rest. That’s the plan anyway. But you all know how plans go in this house.
She had a good appetite (or maybe she just liked my organic meatball noodle soup).
She asked a bunch of questions about different stuff-what day it is, is anyone coming today, what time it is, what day it is, is anyone coming today, what time it is, what day it is… No, that’s not a cut and paste mistake. Pretty normal overall.
She fought me on helping her sit up. It sounded like my technique was wrong but I’m not really sure why. I’m sure it’s the PT in her. She couldn’t hear my explanation and I was in no position to write it down. It’s very frustrating.
Since I haven’t gotten off of my butt and sent out our annual newsletter yet, I thought you all may want to see a recent picture of our girls.
We love them so much!
I took this while we were waiting for their Pediatrician. They look pretty happy for kids about to get a flu shot.
Satomi didn’t have a seizure yesterday or today so these were good days. I cared for her alone all day long-a bath, changed the sheets, cleaned the portable toilet, made meals, and administered meds. I tried to conceive her typical day and work out a system-some plan to do everything. Now that everyone is in bed and still reasonably intact, I think it safe to say that my technique is sound although it does need practice.
I was haunted by a thought throughout the day: Satomi is quickly getting weaker. How long will this plan work? Changing plans are something that I’ve had to learn to accept but the real-life conditions are quite upsetting. There will be a time that Satomi won’t be able to walk to the bathroom or even use the portable bedside toilet. There will be a time that she won’t be able to get out of bed or sit-up. It’s only been a week since her first obvious problems. How will it be in a week? In a month?
I heated up a traditional Japanese New Year’s dinner and placed it on a portable hospital table her Mom had brought us. I had to rush downstairs and feed the girls so I left her alone with it. Upon my return I learned that Satomi had trouble eating and spilled soup onto her newly changed nightshirt. I was reminded of my persistent thought: A time would come that she wouldn’t be able to feed herself, chew, or even swallow. It really bothered me. I helped change her nightshirt but my frustration was obvious. She probably thinks I was mad about the wet shirt.
These past years have been difficult but I never doubted myself. I may have been a stressed out asshole but I never doubted myself. As I type this, the only thought I have is “…can I handle what comes next?”
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