Gloria in Excelsis Deo: Day 57: Using his Hands

Duplicated from our CaringBridge site for permanent record here.

January 13, 2021, written by Mama

Today was a good day. I am trying to embrace gratitude to God for these "wins" and to accept that Thomas may continue to experience three steps forward and two steps backward. May God grant me the grace to live moment to moment.

Our sweet boy seems to have made some good changes to his medication schedules. Previously, he was getting meds simultaneously, or with gaps of two or four hours, so that kind of schedule leads to inconsistent coverage. As of this morning, his schedule for clonidine, methadone, and Ativan has him receiving something every two hours and his withdrawals seemed much better today. Overnight will be a bigger test for the new plan!

He has continued to struggle with retching and emesis. Today was a "good" day and we still had to suction him so many times I've lost count . . . thirty times on day shift alone? It weighs on my little heart that a child five years old is so accustomed to being suctioned down his throat that he does not even mind and actually requests the nurse do it because he can't cough out the emesis himself.

In news to make us all smile . . .

Thomas voluntarily moved his arms more than ever before today. He can lift the left one off the bed, lifting the elbow fully up, in order to slowly migrate over to his beloved Sloth and pick him up. Also, I saw him several times move both left and right hands simultaneously and cross them mid-line to pick something up, which seems like such a big step. Thomas can now give a shaky high five and a slow thumbs up.

During Physical Therapy, Thomas used egg-shaped crayons to color a coloring book. The therapist engaged him in every step, asking him what part he wanted to color next (and have him say it), what color did he want (have him say it), stand patiently while he struggled to pluck the crayon out of the box himself without her rescuing him. She encouraged me that for every single thing he does all day long, I am to let and encourage him to try first before I do it for him.

And I have been! If we so much as have to move his blanket, I ask him if he would please lift up his arms first before I move his blanket.

During Speech Therapy, Thomas did so well sipping water from a straw and I did so well helping him that the Therapist gave me the seal of approval to let him sip water whenever I want (instead of with supervision). Yay me! Yay Thomas!

Thomas would prefer to use whining and moaning to express dissatisfaction or that he wants something, but I have been making every effort for his good days to tell him, "Please use your big boy words" and "I don't what you want if you just make noises. Can you use a word?" Also, if he can say "Water!" he can almost always say, "Water, please," so I'm usually requesting that he does.

Of course, I'm his mama and am gracious, so when he's truly in a challenging state, I'll interpret his groans and moans all he wants. But if he's having a good day (hour), we can work on being a polite patient simultaneously! Below, he had said to me, "Story!" so I asked him to say it politely ("Mama, can you read me a story, please?").

Thomas requested his Child Life Specialist by name, so we sent her a video invitation. Thomas also called home and had his most interactive video phone call yet with a family member (Margaret).