We’ve also figured out—if Joy is happily away at school, Ethan and I can once again knock out his school day in about 2 ½ hours. He and I are really happy with this arrangement. He is getting more of the day to have free play and I can work on other projects or chores, including getting ready for everything to happen when Joy comes homes from school. When she gets home, her feeding, medicine, braces, diaper changes, position changes, baths, and standing all happen in some sort of schedule for the rest of the evening, the latter two not every day. We’ve worked these out so that reading that list sounds a lot more intimidating than it actually is but it helps to be prepared for it. It doesn’t usually get done well if we’re just winging it. As it is, the absolutes don’t waver (food, medicine, diaper changes), but the rest have to give at times, even with the best-laid plans.
She had a new chest brace fitted for her and we get to pick it up tomorrow. I can see how the current chest brace is not really addressing the problem well. It is too short and so, though we try to place it correctly, it always moves to the path of least resistance which is the side toward which she is bending. Things are better than two weeks ago but to really make progress, I think this new brace will help.
She got a new bath chair the first week of January. We have worked to figure out what is best for Joy and our bathroom and as of last night, we had the smoothest bath we have had in a while. If you’re the parent of a special needs child, you know that tweaking equipment to work for your child and their individual needs is an art. It takes thought, patience, and usually a lot of Velcro! 😊 This particular bath chair has a base and slide system so that I don’t have to lift Joyanna as much. As she grows, that is definitely a blessing. I strap her into the chair in her room, wheel her to the bathroom, lock the wheeled portion to the tub base and slide her over into the tub area. I do the reverse when we’re done. There are smart people out there who address the real needs of caregivers. God bless them!
Our family has still avoided COVID-19. We did decide to return to live-stream services for the month of January, since the students returned from the four corners of the country to start the semester. We were thinking to avoid a wave, just in case they brough any cases back. So far, there hasn’t been increased cases in our sub-community and Oklahoma over all has reduced cases a little. I think we’ll be able to return to church in person soon.
By the next post, I’ll be able to let you know if our routine has continued, if we’ve been able to return to church, maybe even if the new chest brace has helped Joyanna. Today, I can tell you, “It’s a good day to have a good day!”
Thanks for your prayers and may the Lord bless you in the days ahead!
This is the Day
This is the day (This is the day)
That the Lord hath made (That the Lord hath made)
We will rejoice (We will rejoice)
And be glad in it (And be glad in it).
This is the day that the Lord hath made,
We will rejoice and be glad in it.
This is the day (This is the day)
That the Lord hath made.