Sunday, October 21, 2018

Teal Pumpkin Project

Does your household hand out treats to trick-or-treaters on Halloween?

If so, please consider having on hand some non-food treats! It would mean a lot to families of kiddos with food allergies or other medical conditions that prevent them from being able to safely consume candy. These kids often like to dress up and go trick-or-treatingjust like their peers.

It's super-easy to indicate to trick-or-treaters that your household has non-food treats on hand. All you have to do is set out a teal pumpkin (available at Target, Michaels, and other retailers) in front of your house, or put a free Teal Pumpkin Project sign on your front door:


If you wish, you could go one step further and add your household to the 2018 Teal Pumpkin Project Map, which helps families know where to take their kids trick-or-treating.

Here are some examples of fun and inexpensive non-food treats that can be purchased in bulk and handed out on Halloween:
  • glow sticks
  • bubbles
  • bouncy balls
  • small notepads
  • fun pencils or erasers
  • stickers
  • slime
  • spinning tops
  • yo-yo's
  • Slinkies
monster truck erasers, glow bracelets, and mini slime from Target, $3/package

Thanks for reading this public service announcement about the Teal Pumpkin Project, and please consider participating!

(Disclaimer: I am not affiliated with the Teal Pumpkin Project or its parent organization, Food Allergy Research & Education. I'm just a parent of a kiddo with food allergies wishing to spread awareness about this great initiative. :-) )

Saturday, October 13, 2018

I Don't Ever Want to See You Again

Photo 128262054 © Amnat Boonjaem -

Thank you, 911 dispatcher, for answering my husband's call and for quickly dispatching an ambulance.

Thank you, ambulance driver, for arriving so quickly at my house.

Thank you, paramedics, for assessing my son, asking good questions, and giving him medication to try to stop his seizure.

I don't ever want to see you again.

Thank you, ER team, for being ready for us when we arrived.

Thank you, ER pediatrician, for leading the team, for including me as part of the team, and for effectively communicating medication orders to the team.

Thank you, ER nurses, for placing an IV (and then another) and for administering medication after medication tothis timesuccessfully stop the seizure.

I don't ever want to see you again.

Thank you, critical care transport team, for carefully gathering medical information about my son from the ER team and first-hand.

Thank you, critical care transport nurses, for answering my questions about rescue anti-seizure meds used at home and respiratory support to be used during transport.

Thank you, critical care transport team, for keeping my son safe on the ambulance ride to the children's hospital.

I don't ever want to see you again.

Thank you, ER team at the children's hospital, for being ready for us when we arrived.

Thank you, ER nurse, for responding rapidly when my son started vomiting.

Thank you, neurologist in the ER, for gently steering us parents towards having our son admitted to the hospital, and for jumping up to help him when he started vomiting again.  

I don't ever want to see you again.

Thank you, doctors on the neurology ward, for assessing my son during your rounds and for listening to my concerns about his current anti-seizure medications.

Thank you, hospital staff, for cleaning the rooms and linens and for preparing and delivering allergy-friendly meals.

Thank you, neurology nurses, for periodically checking my son's vital signs and for giving him whatever he neededIV fluids, medications, and after 3 days in the hospital, his discharge papers.

I don't ever want to see you again.

Wednesday, October 3, 2018

My Kiddo's First Botox Injections

Back in early August, my 5-year-old son had his first appointment at a Cerebral Palsy Clinic in Boston. A rehabilitation doctor there recommended that he get Botox injections in his left leg and arm to improve his gait and increase his usage of his left hand.

The injections would be performed in an operating room under general anesthesia. The reason, his orthopedic surgeon later explained, was to make the experience as positive as possible for kiddo sinceif the Botox helps kiddohe could potentially receive injections every 6 months for years to come. 

After speaking with both the rehab doctor and the orthopedic surgeon, and after looking up research studies on Botox as a treatment for cerebral palsy in children, I felt confident that Botox injections were worth pursuing.

3 Days Before the Procedure

A nurse called and asked me a bunch of questions about kiddoabout prior surgeries, whether he's had problems with anesthesia before, medications he's on, etc.and gave me detailed instructions, including:
  • No solid food after 11:30 p.m. the night before the procedure
  • Liquid medications, water, and/or 100% clear apple juice may be given only up until 2 hours before the procedure
  • Arrive at the hospital 1.5 hours before the procedure to talk with the rehab doctor who will perform the procedure, sign consent forms, etc.
(Dear Readers: Not to be taken as medical advice.)

Day Before the Procedure

11:00 a.m.  All packed to spend the night in Boston. Feeling nervous. Kiddo has been under general anesthesia before but not since he was 9 months old. He's 5 now. How will he react? And what will he remember of this time?

12:30 p.m.  Picked kiddo up from school and drove to Boston. Determined to try to have a fun afternoon with kiddo, to help create positive memories for him.

1:45 p.m.  Checked into a B&B and then took a subway train further into the city. Kiddo is *obsessed* with Trolley from the show Daniel Tiger's Neighborhood and likes riding on public transportation, so our plan was to ride a trolley around town.

2:45 p.m.  Received a phone call confirming that the Botox procedure would be at 7:30 a.m. the next morning and that we should arrive at the hospital by 6:00 a.m. Waited for a trolley. Meanwhile, kiddo found a cool horse statue.

3:15 p.m.  Rode an Old Town Trolley around town.

5:30 p.m.  Ate dinner at McDonald's.

6:00 p.m.  Got onto a subway train to head back to the B&B. The train soon became packed with Red Sox fans headed to a game. It then got stuck behind a broken-down train for about 45 minutes. Kiddo didn't mind, though, becausewe were on a train!

7:30 p.m. Gave kiddo a snack and meds, brushed his teeth, changed him into jammies, and read him part of a Daniel Tiger story.

8:00 p.m.  Kiddo fell asleep. Packed as much as possible and set out clothes for the next day.

9:30 p.m.  Went to bed next to kiddo.

Day of the Procedure

5:00 a.m.  Woke up by alarm clock. Got myself ready for the day. Roused kiddo from sleep (tricky) and then gave him his liquid epilepsy medications and dressed him.

5:40 a.m.  Checked out of the B&B and drove to the hospital.

6:00 a.m. (okay, maybe more like 6:02 a.m. Checked into the surgical unit of the Boston Children's Hospital. A nurse led us back into the pre-surgery area, where she took kiddo's weight, height, blood pressure, temperature, and oxygen saturation level. She handed me a hospital shirt and pants to change kiddo into.

6:30 a.m.  Waited to speak with kiddo's rehabilitation doctor and the anesthesiologist. Watched cartoons.

6:45 a.m.  Anesthesiologist came to talk to us. I found out kiddo would be getting anesthesia via a mask. Was informed of scented options; requested strawberry. Signed a consent form.

7:00 a.m.  Rehab doctor came to see us. She asked kiddo to walk a few steps, and she examined his left arm. She informed me that she would be giving him 2 injections of Botox in his left leg (hamstrings + calf) and 2 injections of Botox in his left arm (biceps + wrist area), plus 1 injection of phenol in his left hamstrings. (The phenol would allow her to inject Botox in a greater number of sites without overdosing him.) Signed a consent form.

7:30 a.m.  Two medical staff wheeled kiddo, still on his patient bed, to the operating room; I came, too. In the OR, the anesthesiologist's assistant held a mask up to kiddo's face. Someone asked if kiddo has a favorite song. "Wheels on the Bus," I said. All 5 or 6 medical staff members in the room and I sang "Wheels on the Bus" as kiddo drifted quickly off to sleep. 

7:35 a.m.  I went to the OR waiting area, where I got some much-needed (and free!) coffee.

8:15 a.m.  Kiddo's rehab doctor came into the waiting room to inform me that the procedure had gone well.

8:30 a.m.  A nurse led me back to the Post-Anesthesia Care Unit, where I got to see kiddo. He woke up for a little bit, groggy and cranky, and then soon went back to sleep. The nurse explained that coming out of anesthesia, he might experience nausea, vomiting, tiredness, and/or pain at the phenol injection siteand she gave me print-outs with information, including who to call if I had concerns later in the day. She also gave me the rehab doctor's instructions for physical therapy for the next 3 weeks.

9:30 a.m.  Changed kiddo into his clothes and wheeled him out of the unit.

9:45 a.m.  Went by the aquarium in the hospital lobby, at which point kiddo insisted on standing up to look at the fish.

a little wobbly post-anesthesia but otherwise okay
10:00 a.m.  Drove home!

11:00 a.m.  After driving through Boston traffic and getting lost, arrived home!

12:00 p.m.  Kiddo walked to his place at the dining table, indicating that he was hungry. He had a light meal: plain toast, saltine crackers, part of a banana, and some apple juice. We spent the rest of the afternoon intermittently napping and low-key playing at home. Kiddo was in an overall good mood and showed no signs of nausea or discomfort.


Overall, the trip and procedure went smoothly. At only 6 days post-procedure, it's too soon to tell whether the Botox has helped kiddo; according to his rehab doctor, it could take 2 weeks before we start to see effects. She'll re-evaluate him at 8 weeks.

If Botox does help kiddo, I have no qualms about doing it all again.

Thursday, September 20, 2018

The Job I Never Applied For

ID 67561960 © Bravissimos |

I am technically a stay-at-home mom, but I prefer to think of myself as my son's personal health care manager. It's a job I didn't apply for, but if I had, I imagine the job post would have looked something like this:

Job Title: Personal Health Care Manager

Job Description: The Personal Health Care Manager will perform all administrative tasks pertaining to the health care of a 5-year-old boy with spastic quadriplegic cerebral palsy and take him to all medical appointments.

Regular Work Hours: Almost all the time

On-Call Hours: All the time

Sick Days: Not guaranteed

Salary: $0 (non-negotiable)

Background of Successful Applicant: There is no way to prepare for this position. If hired, just dive right in. ;-)

  1. Fill out formsmedical history forms, developmental history forms, sensory questionnaires, etc. You will quickly become an expert form-filler-outer.
  2. Take kid to all doctor appointments. After each appointment, make more appointments.
  3. Hand over credit card to: doctors' receptionists, therapists' receptionists, pharmacy staff, etc.
  4. HOWEVER, if anyone says the payment they're asking for will go towards your deductible, smile and say, "We've already met the deductible." (Feel free to throw in a cheeky "One ambulance ride will do that for ya!")
  5. Learn the following vocabulary words: ophthalmology, orthotics, pulmonology, gastroenterology, and speech and language pathology.
  6. Learn the differences between a neurologist, a neuropsychologist, and a neurosurgeon. Figure out which questions to ask which one.
  7. Make phone calls to: schedule appointments, reschedule appointments, cancel appointments, request referrals from kid's pediatrician for appointments with specialists, notify kid's school of absences for appointments, and complain to your mom about appointments.
  8. Also make phone calls to: get lab results, argue with the health insurance company, find a pharmacy that has kid's recently prescribed (and difficult-to-find) med in stock, and update your mom on (and/or complain about) all of the above.
  9. Answer phone calls from: doctors ("The lab results are in..."), doctors' receptionists ("Oops, the doctor will be out of town during your scheduled appointment, so we need to reschedule"), complex care coordinators ("I recommend taking him to the following specialists: ______, ______, ______, and ______"), and your mom (she deserves it). 
  10. Learn the meaning of the following acronyms: MRI, EEG, CP, EKG, V/P, IVH, IEP, OT, PT, and WT_ (J/K).
  11. File: (paid) medical bills, doctor visit summaries, therapy reports, and anything else containing a word ending in "-ology." (Except "biology." Or "theology." Okay, don't file everything that ends in "-ology." The point is, you will need to file lots of stuff.)
  12. Take kid to get x-rays. Be prepared to hold down his arms and/or legs while wearing a giant radiation-proof vest with 101 Dalmations on it.
  13. Take kid to get MRI images. For best results, calm kid down in any way possible. Tried-and-true method: lie on top of kid, enter MRI machine with him, and sing "Wheels on the Bus." Good pitch not necessary; you'll both be wearing ear plugs anyway.
  14. Update family's Google calendar. If any week has no appointments scheduled, check for errors. If there are no errors, schedule a family vacation.
  15. This list is not comprehensive. Additional duties include (but are not limited to): taking care of kid, coordinating kid's care with school staff and outside therapists, and managing medical emergencies. If/when feeling overwhelmed by duties, seek encouragement from kid. He will gladly, on demand, clap his hands or say "Go!"

Job Benefits:
  1. Perspective
  2. Increased empathy and compassion, and best of all...
  3. Joy

Saturday, September 15, 2018

What to Say to a Parent of a Child With Special Needs


Maybe you see a stranger with their child with special needs, and you want to make a connection but don't know what to say. 

Or maybe you have a friend or family member who has a child with special needs, and you want to be supportive but worry about saying the "wrong" thing.

Here are some ideas of things to say, based on my own experiences as a parent of a child with special needs:

To a stranger, friend, or family member:

1. "He has the sweetest smile."

2. "I like his spirit."

3. (To a parent of a younger child) "He's so cute/adorable/handsome/beautiful."

4. (To a parent of an older child) "He's so handsome/beautiful."

5. (To a friend or family member whom you haven't seen in a while) "He's made so much progress since I saw him last." 

Even better: Be specific about what area(s) you've seen progress in.

6. (To a stranger) "I have a son/daughter/grandson/granddaughter/niece/nephew with Down syndrome/cerebral palsy/[fill in the blank]." 

Tread carefully with this one: Don't assume you know the child's diagnosis. 

Also, it's often best not to go into much detail about your loved one. If your loved one is much older than the child and is doing well, you could say something like, "I have a nephew with Down syndrome. He's 20 now, and he's doing great." Parents of young children with special needs often worry about their child's future, so saying that your loved one with the same or a similar diagnosis is doing well can give them hope.

7. Compliment an ability you see: 
  • If you witness the child dancing, you could say, "I like his moves!" 
  • If you witness him running: "Wow, he's fast!" 
  • Or if you witness him accomplishing a difficult feat, like climbing up the stairs of a playground structure while wearing braces on his feet: "Wow! Look at him go!" or "Wow, he's doing great!"

8. Compliment good behavior you see:
  • "He's doing a great job sharing his toys."
  • "He's being so patient waiting for his turn."

9. ....or, simply, smile.

The key is to try to keep the interaction positive. Focus on the here and now. Avoid talking about the child's distant future or asking about the child's long-term prognosisunless the parent brings it upas these topics can be scary and upsetting for the parent to think about and discuss.

To someone who has just shared with you challenging news about their child (e.g., a difficult new diagnosis, recent medical incident, etc.):

1. "That sounds tough/challenging."

2. "I'm so sorry you're going through this."

3. "I'll be thinking of him/praying for him."

4. "How is he doing now?"

5. "I'm glad he's doing better." (If he is indeed doing better)

6. "How are you doing?"

7. "Is there anything I can do to help?" 

Even better: Think of something you could do to help, and offer to do it. For example, offer to babysit their other children for free, pick up groceries for them, or drop off a homemade meal.

8. "I'm here for you if you ever need to talk."

The key is to respond with sensitivity and compassion. Again, it's best to avoid asking questions about the distant future or predicting the future (e.g., saying you're sure he'll make a full recovery). Also, just being a good listener can be helpful to the parent.

I hope you found this article helpful. If you did, please consider sharing it on social media; it would mean a lot to me. 

Also, I'd love to hear any additional ideas you have of things to say to a parent of a child with special needs in the comments section below.

Thanks so much for reading!

Wednesday, August 15, 2018

Goodnight Mom (a parody)

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 rhyme
Goodnight time
Goodnight pic of happy time

Goodnight nightstand
And glass of red wine

Goodnight tears
Goodnight fears

Goodnight pills
And goodnight bills

Goodnight daily grind
And goodnight frazzled mind

Goodnight long list

Goodnight Nook
And goodnight dream
Goodnight glasses
Goodnight ice cream

And goodnight to the little voice 
     whispering 'sleep'

Goodnight home
Goodnight care
Goodnight mommas everywhere

Friday, August 3, 2018

An Afternoon at a Cerebral Palsy Clinic


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 homewell 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 overwhelmed. 

I'm grateful. 

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 hopeful.

I'm exhausted.

I'm a mom of a child with cerebral palsy.