Celebrating 20 years 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 http://www.hasbrochildrenshospital.org/ventilator-integration-program-(vip).html 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: MEALTIME GUIDELINES        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 TRACH 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.. VIP FAMILY SPOTLIGHT The OLSONS 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 P VI 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 members. Our own VIP family member ABIGAIL was named MDA 2014 Goodwill Ambassador.