The Pediatric Division of Rhode Island Hospital
VIP Newsletter
Ventilator Integration Program
The State of the Program
Karen L. Daigle MD
“Every beginning is a consequence—every beginning ends something.” Paul Valery
As you may know, we have relocated our clinic visits from the CNDC to the Respiratory and Immunology
Center (the RIC) on Hasbro Lower Level. This move was a consequence of changes planned for the CNDC,
ending our time in that space. I would like to welcome our new staff member, our medical assistant Cindy
Mijangos. Other people you might meet are Julia Estrela, MA and Michelle Charette, the clinic secretary.
Julia and Michelle have been working in the RIC for several years.
One consequence of our new beginning is the opportunity to develop our service. The Pediatric Pulmonary
Function Lab is located in the RIC. This is Stacie’s base of operation. Here she keeps all of her tools for
respiratory care, as well as testing equipment. We now have easy access to these aids, to provide more
comprehensive assessment of and education about your child’s lung health.
In the last newsletter, I noted that we were working on a protocol for monitoring lung health. We now have a
special device that can measure carbon dioxide level with a sensor placed on the skin. This is an alternative to
doing a blood gas, a test that is not always available in the clinic. This measurement is very helpful when
making ventilator adjustments or thinking about changes to CPAP or BiPAP. Testing of several children so
far has gone well.
To end, for those of us who long for an end to this winter:
“No winter lasts forever; no spring skips its turn.” Hal Borland
I am looking forward to sunshine and warmer weather after this long, cold winter. The school year will soon be ending and fun
summer activities are just around the corner. A list of accessible summer activities is included in this newsletter to help you plan a
fun filled summer. If you have any activities that you would recommend, please let us know so we can include them in future newsletters.
Along with sunny weather, the threat of hurricanes looms towards the end of the summer. Storms of any type bring the possibility
of loss of electricity, loss of heat, loss of water, closing of roads and flooding. To help prepare for bad weather, an information
sheet is located on the VIP section of the Hasbro Children’s Hospital website at
Some of these tips can be done well in advance of bad weather such as registering your child with the special care registry in your
state and notifying your local community medical services. Other activities, such as checking both prescription and over the counter medication supplies, can be done a few days before bad weather. If you have any questions regarding any of the suggestions,
contact the office and we can review. Hope these tips help prepare you and your family for a fun and safe summer.
Jerilyn Devin RNP
VIP Coordinator
Apr 2014 Vol.2
Hasbro Children’s Hospital
MDA camp is a one week residential, accessible camp for children ages 6-17
who are affected with a neuromuscular disorder.
This year’s theme is SUPER HEROES. Activities range from swimming to arts and crafts to talent
shows. Campers with a variety of abilities enjoy camp, some campers use wheelchairs, some campers
use braces and some campers walk on their own. The camp is located at Channel 3 Kids Camp in
Andover, CT. If you are interested in camp for the whole week or would like to see what it is about
and attend on the “VIP” day, please contact Jane Young at 401-732-1910
Marie Bianco : VIP Parent Consultant
Hi Everyone, Welcome to our second VIP Newsletter. As we slowly start to head
into spring, let's hope the snow catches on and goes away. I think we have all seen enough for
this season. As I got to visit with you during clinic over the last few months I asked for
comments on our first edition. I'm happy to report that I didn't receive any negative feedback
and that most of you liked receiving it by email. I have acquired a lot of your email addresses
but if I don't have yours please let me know so you can start getting the newsletter the "green
"way. Why make more waste if we don't have to.
Over the last 18 months, I've been gathering information from you for our VIP Family
Survey and I'd like to share some of my findings. It seems to be unanimous that we all look
forward to having some family fun outdoors. A lot of you have attended at least one hospital
sponsored outing and would like to go to more of them. In the past, we've had a couple of VIP
outings and we would like to continue having them in the future.
If you have any ideas on family fun that is handicapped accessible, please share them
with me and I'll pass them on to the team. Several people were interested in a support
group but everyone has a different schedule so we’ll have to work on that one. I was very happy
to find that most of you would very much like to talk to a new VIP family whose child has a
similar diagnosis to your child’s diagnosis. Parent to parent sharing can be so rich in ideas and
helpful with problems. I hope you all get to experience that in the future. You have given us
many ideas for articles in our newsletter and for that I thank you. Please continue to share your
stories with me and I’ll try to write about them. For now take care, be happy & stay healthy.
Mealtime Strategies For The Picky Eater
Meggan E. O’Connell MS,CCC-SLP
Speech/Language Pathologist
Children who refuse to eat certain foods or eat very little at mealtimes are often called ‘picky eaters’. There are a variety of
reasons why a child may develop ‘picky’ eating habits. Some children may not be experiencing the physical sense of hunger or
thirst while others have learned to use certain behaviors at mealtimes in order to get something that they want, such as preferred
foods or attention. Others may have had interruptions to early oral feeding opportunities (due to a medical condition) or prior
unpleasant experiences associated with eating/drinking that continue to trigger emotional discomfort at mealtimes. Common
characteristics of ‘picky eaters’ include:
food refusals/selectivity (only eats a few foods, or a very small amount of food)
difficulty transitioning to new food textures, tastes, temperatures, utensils, etc
specific preferences for the mealtime routine (only eats certain food textures, only drinks liquids warmed to a certain temperature, only drinks liquids from a specific bottle/cup, feeds differently with different people)
disruptive behavior/tantrums at mealtimes (throwing foods, gagging, etc)
Children with this type of feeding difficulty, who are otherwise generally healthy, typically respond well to routine. The following
guidelines for mealtime structure are suggested to promote a pleasant, healthy mealtime environment and to promote the development of age-appropriate feeding skills:
Provide 3 meals and 1-2 snacks per day
Keep the mealtime atmosphere neutral, do not force feed or comment on how much/how well the child is eating. Children
should learn to eat without approval or disapproval.
Mealtime should be ended at 30 minutes or when child shows signs of disinterest to continue eating (playing with food without eating, throwing food in anger*). *if angry, it is important to calm the child down before taking him/her out of the high
chair to end the meal
Clean up one time, at the end of the meal. Do not wipe hands/face frequently during meals
Provide meals and snacks at regularly scheduled times every day (e.g., breakfast as close to the same time every day)
Child must sit in highchair or at the table while eating; no ‘grazing’ or eating in several areas of the house
Offer solids first, fluids last
Limit meals to 30 minutes and snacks to 15 minutes
Do not offer food or liquids (except water) between scheduled meal & snack times
Encourage self-feeding (finger feeding, holding spoon, etc); allowing the child some level of control at mealtimes helps to
reduce unwanted behaviors
Do not use games or distractions during meals
Relax and have fun, use mealtimes as an opportunity to socialize with your child
It’s been two years in the making and now our documentary/short film “Trach" is finally released.
It was developed and created with love and thoughtfulness, to bring you into the lives of three
children with tracheostomy tubes.
The film brings us an intimate look into the daily lives of Corinna, Liam and Alia. We witness their
courage and the incredible strength and commitment of their families and care providers.
Please take a moment to view this amazing documentary at http://vimeo.com/89501605;
We would like to give special thanks to the Calise, Olson, and Harper families for participating in
this project. We also thank Sean Devin & Jose Cota for volunteering their time in creating this special and moving documentary.
This video will soon be available on the Hasbro Children’s Hospital website, under the Pediatric Pulmonology link..
Eric, Karin and Liam Olson were nice enough to take part in our very first VIP family
spot light. We wanted to get some ideas of where families like to go spend time together: a
walk in the park, watching a movie or seeing their favorite sports team play. The Olsons gave
us some fantastic ideas to share with you.
Roger Williams Zoo, Providence: Zero stairs or any other road blocks. The Olsons go at least
3 times a month “even in the winter”; it’s a nice walk for everyone.
Audubon Society, Bristol: Walk is not 100% paved though it is wheelchair accessible;
there’s a boardwalk right down to the water.
Colt State Park, Bristol: Several paved walks and a great place to fly kite, which the
Olsons planned to do this season.
Showcase Cinemas: Liam loves going to the movies, there’s ample wheelchair seating
and no complaints about equipment alarms.
Providence Bruins: Dunkin Donuts center has handicap sections, just need to call
a few hours before event to make sure they are available. Seats are accessible to
rest rooms and concessions.
Boston Red Sox, Boston MA: Though this trip requires lots of planning, it’s
always fun. Seats are good and also close to private restrooms. The staff at Fenway are
very helpful.
Pawtucket Red Sox Pawtucket: Easy access to park, pre-plan for convenient parking and
seats especially on weekends or special events (fireworks).
Family Friendly Restaurants: Gregg’s or Chelos, tables are far enough apart so that Liam’s
wheelchair is not obstructing the aisle.
Some thoughts that Karin also shared: Liam has a bike bell on his chair for crowd control.
Many of their adventures take place during off hours to avoid huge crowds.
Check out Eric’s blog pressuresupport.com
MDA Dinner Nov 7: The VIP team was invited to take part in the MDA
Night of Heroes dinner at Wright’s Farm. The team received a plaque in
recognition of their support with the MDA program. It was a wonderful
event where we were able to spend time with past &/present VIP family
Our own VIP family member ABIGAIL was named
MDA 2014 Goodwill Ambassador.