Wednesday, August 15, 2018
In her green bedroom
There was a mobile phone
And a glass of red wine
And a photo of—
Her husband and son at a happy time
And there were three little tears stemming from fears
And two little pills
And some medical bills
And a little-too-long list
And a baby monitor, kissed
And a Nook and a dream and a bowl of ice cream
And a little voice in her head whispering 'sleep'
Goodnight pic of happy time
And glass of red wine
And goodnight bills
Goodnight daily grind
And goodnight frazzled mind
Goodnight long list
And goodnight dream
Goodnight ice cream
And goodnight to the little voice
Goodnight mommas everywhere
Friday, August 3, 2018
My mind is spinning. I couldn't sleep last night. There are so many things to think about and possible treatments to consider and appointments to schedule and feelings to process.
I took my 4-year-old son to the Cerebral Palsy Clinic at Boston Children's Hospital yesterday. We were originally going to have a full day there and see 4 doctors, but 2 of them had to reschedule for a later date, which I'm now glad of: Two doctors, plus the many therapists and other staff who popped in, was more than enough for 1 day.
Let me start by saying I'm very grateful for having access to this clinic and for the quality and comprehensiveness of the care that my son received there.
The afternoon unfolded like so...
Oliver and I started off seeing a rehabilitation doctor and a clinical fellow in rehabilitative medicine. The doctor had Oliver lie down on the bed, and she maneuvered his legs and feet into different positions and rattled off approximate angle measurements for the clinical fellow to write down. She had him sit up and asked him to reach up in different ways to touch his toy truck.
We discussed Botox injections to reduce spasticity in his left leg and arm, a new hand splint for his left wrist, and the possibility of a wheelchair to give him independence when he's too tired to walk.
She brought in an orthotics specialist who evaluated his ankle-foot orthoses, watched him walk with and without them, and suggested heel inserts for his shoes. He marveled at the AFOs' European design:
Then a speech and language pathologist came into the room. She asked me questions about Oliver's speech, his signs, and his ability to communicate using the Picture Exchange Communication System (PECS):
She asked him simple questions:
"Where are your socks?" Oliver pointed to them.
"Who is your mommy?" Oliver smiled, looked at me, and pointed.
"Do you like school?" Oliver signed "yes."
"Do you like watching Daniel Tiger?" (We had already discussed his love of Daniel Tiger's Neighborhood.) Oliver signed "yes."
"Do you like going to outer space?" Oliver signed "yes."
We talked about how PECS was going for us at home—well overall, but I believe he could communicate more if he had a communication device. The speech and language pathologist, who specializes in augmentative and alternative communication (AAC) devices, agreed and gave me information about how to get Oliver evaluated for a suitable AAC device.
Next, Oliver and I saw a complex care pediatrician. We talked about treatments for drooling and the possibility of introducing appetite stimulants to help him gain weight.
She asked me about each body system in Oliver. Does he have any heart issues? Any gastrointestinal issues? Any difficulty breathing? We talked extensively about his medical past, present, and near future, and she recommended that I book appointments with a few more specialists.
She said she's available to help if I ever need different specialists to talk to each other about Oliver's care, or if I ever need help coordinating appointments with different specialists to happen on the same day to make life easier for us.
She examined Oliver.
At some point, an occupational therapist entered the room to try to take a look at Oliver's left hand; a physical therapist entered to discuss the possibility of an activity/feeding chair and wheelchair for home; and the orthotics specialist came in to see Oliver walk one more time with his AFOs on and heel inserts in his shoes.
So many people. So much information.
I'm nervous about all the upcoming appointments and procedures and how they might affect my mental health.
I'm excited to see how the new treatments, devices, and equipment will help Oliver grow and develop.
I'm a mom of a child with cerebral palsy.