Spring Break for Nate. LJ rocked his feeding therapy this week- eating 17 bites or tastes of pureed food (brisket, pears veggies and butterscotch pudding). Good times with visits throughout the week from good friends Brett + Beth, Alex + Tas and Kim + baby Addy. All of our friends and families' visits have really kept us going and make the day-to-day grind withstanding. Here we are celebratin' Nanny and Bop's respective birthdays again. This year I made them a flourless-walnut-chocolate fudge cake that my mom's Nanny used to always make her....and in honor of Bop's big 70th we put a single candle in it that said "old". Tacky huh? My MIL's mom Et, 94, is LJ's #1 cheerleader...and she was able to make it over to my house for the celebration- we are grateful! Other than that we've started getting ready for our big trip up to NJ. Nate packed his rolling bag chock full of toys and books and asked me if I would mind packing his clothes in my bag because he didn't have any room left for them in his;) I suppose he's ready for the adventure whether or not we are! (I guess I should also admit that since my new mantra on March 12th I haven't been back to a yoga class and the fear has unfortunately crept back into my life.)
I lifted this from St. Joseph's website. If you are interested in learning more you can go to feedingcenter.org
LJ and I start the program on April 19th. We're very excited but also totally nervous about how trying the days will be. Cathy Fox is our local feeding specialist (her bio is below) so we are thrilled that we will have a plan of care with continuity once the treatment is completed in NJ.
Approach:St. Joseph's Children's Hospital offers a unique, methodical, and multidisciplinary approach to the assessment and treatment for pediatric feeding and swallowing. It is designed to focus on the medical, motor, and learned patterns that often accompany this dysfunction.
Evaluation
All children are scheduled evaluated by the team. Durting the evaluation, complete medical and feeding histories are obtained. The team will observe a meal conducted by the child’s caregiver’s to assess the child’s oral-motor skills and identify any environmental factors that might be contributing to any undesirable mealtime behaviors. The child will alos be given complete physical and motor examinations. A list of factors that are interfering with feeding success or progress are identified, and a stepwise management plan is devised. Outpatient Services
After the evaluation has been conducted, most children are followed at the Center on an outpatient basis. This may include interventions here at the Center with training of the family and community therapists to continue the child's program in their natural environment. Patient follow-up and parent/therapist training are essential elements for the outpatient tier. Treatment frequency is assessed based on need. Children who require more intensive interventions will be referred to the Day Treatment program. Day Treatment Admission
Day Treatment is recommended specifically when a child is not making progress on an outpatient basis, or for the child who is ready to make significant rapid changes such as advancing from tube feedings to oral intake. Children who live at least two hours away from the Center can send in medical records and a videotape of a feeding session to be considered for admission directly into the Day Treatment Program. Admission goals in these cases may be to complete a full evaluation and initiate a treatment program that will then be carried out primarily at home with consultative assistance from the Center's team. Children coming from Outpatient treatment will also have specific goals determined by the team and family. Each treatment plan in individually established and modified daily using treatment session data and applied behavioral analysis. Our focus is to establish positive learning experiences on a foundation of good nutrition and optimized function of the body systems that support feeding. Family involvement in this program is necessary and critical. As the child and family progress, supported interactions at meal times are gradually reestablished. Once the child’s parents are able to consistently and independently carry out the treatment program throughout the entire day, discharge is planned. The Day Treatment setting is similar to a specialized day care. A nurse supervises the play area and provides tube feedings, medications, and daily care as per the doctors' orders. Therapy staff implement multiple motor and feeding sessions according to the child's plan. The environment is safe, clean, and designed for children. Daily schedules include time for naps, play, and lots of interaction. Day Treatment occurs from 8:30am to 4pm, five days a week. Treatment goals are established for the weekends at home.
Our Team
Evaluation and treatment of feeding and swallowing in isolation ignores the systemic factors often contributing to feeding and swallowing problems. Families seeking further interventions for feeding problems often are frustrated by the limited progress that is made after years of individual therapy. We believe that children with feeding problems require a holistic approach implemented by a multidisciplinary team. Out team includes the family, medical, community, and educational environment under the umbrella of the Center.
The Center for Pediatric Feeding and Swallowing is the first of its kind in New Jersey to blend a multidisciplinary approach with experienced pediatric subspecialties techniques.
Our multidisciplinary team includes:
Developmental pediatrics
Feeding specialists
Occupational therapy
Physical therapy
Speech pathology / oral-motor therapy
Behavioral analysis
Nursing
Family counseling
Financial coordinator
We have direct access to services from:
Nutrition
Gastroenterology
Pulmonology
Genetics
Radiology
Endocrinology
General pediatrics
Cardiology
Otolaryngology
Pediatric neurology
Dentistry
Respiratory therapy
Craniofacial team
Our Staff
Dr. Peggy S. Eicher received her MD from Emory University School of Medicine. She did her Pediatric residency and Neurodevelopmental pediatrics fellowship in Baltimore, MD at the University of Maryland Hospital and the Kennedy Krieger Institute respectively. She started a multidisciplinary feeding program at Kennedy Krieger and subsequently at the Children's Seashore House of the Children's Hospital of Philadelphia before coming to be Medical Director of the Center for Pediatric Feeding and Swallowing at St. Joseph's Children's Hospital. She has lectured, published, and conducted research in the field of pediatric feeding.
William J. Roche M.S. CCC BRS-S, is the clinical director of he Center for Pediatric Feeding and Swallowing and the Regional Craniofacial Center at St. Joseph's Childrens Hospital. He earned his masters degree in Speech and Langauge Pathology at Columbia University and is currently a doctoral student at Nova Southeastern University. He is an adjunct professor at Seton Hall University, Montclair State University and William Paterson University where he teaches graduate courses in Craniofacial Anomalies and Feeding and Swallowing.
Louise Vitello, MSN, APNC is the Pediatric Nurse Practitioner for the feeding and swallowing center. She received her undergraduate nursing degree from Columbia University, and her Master’s degree from Rutgers University. Her experience has included NICU, Pediatric. ER, and Primary Care. Louise joined the feeding team in Sept. 2003.
Jo Ann V. Petronchak MS CCC is the Speech-Language Pathologist on the Feeding Team at the Center. She received her Master's Degree from Columbia University, and she has been working with the pediatric population with feeding and swallowing for over 20 years. She has been at St. Joseph's Hospital since 1987.
Merrill Berkowitz, Ph.D., BCBA is the behavior analyst for the program. He is a board certified behavior analyst. He obtained his doctorate in school psychology at Syracuse University and a Master’s degree in clinical psychology at Loyola College in Maryland. Prior to joining the team at St. Joseph’s, he worked as a clinical specialist in Kennedy Krieger Institute’s feeding program and completed his pre-doctoral internship in pediatric feeding disorders and severed behavior disorders at the Marcus Institute. Dr. Berkowitz has presented and published research in the area of pediatric feeding and school psychology.
Cathy Fox, MS, OTR/L is an occupational therapist who is the clinical coordinator of OT at Children’s National Medical Center in Washington DC. She also has her own private practice in Frederick, Maryland specializing in pediatric feeding, swallowing and neuromotor problems. She received a Masters of Science from Johns Hopkins University and has 23 years of experience working exclusively in hospital and rehabilitation settings, treating infants and children. Cathy also has been involved in developing and operating several major feeding programs across the United States. Her post graduate areas of expertise includes extensive training in evaluation and treatment of pediatric feeding & swallowing disorders, respiratory/ventilatory function, musculoskeletal treatment of the trunk, shoulders and neck, including the 8 week pediatric and infant Neurodevelopmental Treatment courses. She has also written and lectured extensively on a variety of topics in her specialty areas.
Mary Louise Kerwin, PhD, BCBA is a professor of psychology at Rowan University in Glassboro, NJ. A board-certified behavior analyst and a licensed psychologist, she
earned her PhD in Developmental and Counseling Psychology at the University of Notre Dame. She co-founded and co-directed the Pediatric Feeding and Swallowing
program at Children’s Seashore House and The Children’s Hospital of Philadelphia. Dr. Kerwin is a research consultant at the Center for Pediatric Feeding and Swallowing at St. Joseph’s Children’s Hospital.
Annmarie Marando, B.A. is the Center’s efeed™ Coordinator. She is a graduate of Montclair State University, with a Bachelor’s degree in Psychology. She has worked with children and adults with developmental disabilities for more 15 years. She has been a member of the Center since 2002.
Miriam Ramos is the Child Care Aide on our Feeding Team. She also is one of our Spanish / English translators. She has been working with children for over five years. She has been a member since 2001.
Helen Stockstill is the Feeding & Swallowing Center's Administrative Assistant. She has spent 25 years as an employee of the hospital and has been a member of the center since 2001. She enjoys working with the children and their parents and is glad to be a part of our Center.
Pamela Martorana, M.A. LPC is the Licensed Professional Counselor, (LPC) on the Feeding Team at the Center. She received her Master's Degree in counseling from Montclair State University and then studied at the Minuchin Center for Family Therapy in New York. She has been working families in a variety of settings for over twelve years. Pamela joined the Feeding Team in April 2003.
Philomena Toscano, CPAT is the Center’s Patient Financial Representative. She is a Certified Patient Account Technician who has been working at St. Joseph’s Regional Medical Center for 8 years. Philomena has over 20 years experience working in patient accounts and extensive experience with office procedures.
Brittney Chambers, B.A. is a feeding specialist for the Center. She graduated from William Paterson University with a Bachelors of Science in Biology. She was previously employed by United Way of Passaic County for 2 years, working with preschool aged children to achieve adequate nutrition needs. She has been a member of the team since May 2007. Brittney plans to continue her education in the near future.
Annette Molina has been a feeding specialist for the center since 2007. She has been working with children for over 10 years and has been a part of St. Joseph’s Regional Medical Center for over 5 years. She received her undergraduate degree from William Paterson University and plans on continuing her education in the near future.
Jessica Donato, OTR/L received her Bachelor’s degree in occupational therapy at the University of New Hampshire. Jessica holds a license to practice occupational therapy in New Jersey. She has pediatric experience in the areas of Early Intervention, NICU and school-based OT.
Andrea Huber, B.S. is a feeding specialist for the center. She has been a member of the team since 2007. She has worked with children for many years. She graduated from Towson University with a Bachelors of Science degree in Psychology. Andrea is continuing her education at Montclair State University to receive her Masters Degree in Nutrition and Food Science.
Mallory Nahorniak, B.A. is a feeding specialist at the Center. She graduated from William Paterson University with a Bachelor’s Degree in Psychology. She has been working with children over the past five years and joined the Feeding and Swallowing Center in September 2007. Mallory plans to continue her education in the future.
Jeannie Rojas, PT, DPT received her B.S. in psychology at Kean University in Union, New Jersey. She then obtained her doctorate in physical therapy from the University of Medicine of New Jersey. She currently holds a license to practice Physical Therapy in the state of New Jersey. She has pediatric experience in Early Intervention, working in Bergen, Essex, and Morris County.
Regina De Leon is the Child-care aide on our Feeding Team. She also is one of our Spanish / English translators. She has been working with our children since 2006. She came to the Center initially as a volunteer and began working at the Center after graduating High School.
Giselle Benjamin, B.A. is a feeding specialist at the Center. She joined our Team in 2008. She has been working with children for over seven years. Giselle graduated from Rutgers University with a Bachelor’s degree in Psychology and is currently pursuing a degree in nursing.
Noodles has been approved by our insurance company to go to New Jersey for St. Joseph's Feeding and Swallowing program! We had been told initially that it was very rare to get a referral to go out-of-state for these sort of treatments. So Josh and I started a letter campaign to everyone we could find in our insurance company who might listen. I think we were persistent and reasonable in our expectations and that the insurance company ultimately listened to an argument that makes sense for them and for us!
I feel like we won the battle but we are still fighting the war- really on two fronts- getting LJ's insurance coverage to work properly and then getting the treatments to work, once we get help paying for them. While we don't want to celebrate this victory too much, the real important part is getting Noodles to eat. In a perfect world we could get him weaned off his feeding tube and have him eating french fries and string cheese afterwards. It certainly helps that most of it will be covered though. And hey, a girl can dream!
Meanwhile, it seems like you shouldn't have to write a dozen letters to get something like this done. Aside from being crazy busy with trying to persuade our insurance company that this was a medical necessity, we have been exploring the logistics of relocating to Paterson, NJ for five weeks. I have put down a deposit on an apartment that is walking distance to the hospital. I will pay week to week since we don't know how long the treatment will actually take. Sight unseen, I'm quite overwhelmed and anxious about the whole situation. It will be so difficult to be away from Nate and Josh for so long. But at the same time, I think Josh and I have devised a pretty good game plan. And on an even more positive note, I am thinking it will be sweet to get to the apartment at the end of the day and not have to cook dinner or clean the house. Plus we will have some fun family side trips to NYC and Princeton on the weekends.
HBOT is over! The speech pathologist has ordered LJ this communication device to help him express his needs: Talk Board. The physiatrist has prescribed botox (don't know what we are doing yet but I'd like some if he's getting some) to help Noodles relax his right hand and right ankle in addition to an orthotic called a DAFO#4 to help improve his gait (he'll have to wear them in both his shoes). Things are heading towards the intensive feeding program at New Jersey's St. Joseph Children's Hospital next month-we will be gone for five weeks. I talked about it in this post here. We had a great visit with the pulmonologist earlier this week. He didn't think the fluid in LJ's ears looked terrible plus he thought we could wait awhile to have tubes put in LJ's ears. And yesterday I had the luxury of time on my side and I was lucky enough to get to yoga class. It was the first time in what felt like 100 years. After some stretching, some breathing and basically torturing my poor body, the teacher said something at the conclusion of shavasana that stopped me in my tracks. It spoke to my heart.
For those of you unfamiliar with shavasana, it is 10 minutes of bliss... lying on your back in complete and utter relaxation. No toddlers needing me to play legos. No dog barking incessantly. No baby requiring me to be a mind-reader. Usually though, my mind wanders in cluttered thoughts worrying about the boys, phone calls to doctors and fighting with insurance. The instructor said, Fear limits you. It's harmful. It keeps you stuck in a place of negativity. Your mind cannot progress . You have to hold yourself accountable. We are our teachers.
The real practice of yoga happens when we step off our mats and step into life....I vowed right then to practice getting rid of my fears. I can't be limited by worry. LJ is teaching me-life is teaching me. Of course we are changed and we are marked by life's past experiences. Our past is always with us. But I can now see the possibility to see ourselves...and to shape ourselves to our own choosing. We can move beyond the limits that nature has imposed on LJ and on our family. It was such a powerful message yesterday. We have the power to adapt. I look forward to creating new realities and new ways of being for both Nate + Lewis.
Here's the chamber and a photo of LJ during the "dive".
Comparison from March to January in the sitting position: He still can't sit on his own for more than a few seconds but his neck position is a lot better. He's getting stronger.
Comparison of Quadruped Positioning: He's a lot better at this one....where he used to not even be able to lift himself up off the floor on the right-hand picture. To now he is getting his arms in full extension and scooching his knees forward.
And here Noodles bangs his drum during music therapy!
Our schedule: Josh and I get a date Friday night with Marnie and Corbin at a fabulous restaurant called Marvin; Nate has soccer, birthday parties, dinner Saturday night at friends Carolyn and Andreas' house; Purim carnival at Nate's school, visit with Great Grandma Et + some quiet time. Perfect.
This is LJ's buddy Max; they used to be roommates at the NICU. He's doing beautifully and is very mobile!
These last thirty days have been filled with hopes, projections and memories of LJ's first year of life. He and I have been constant companions during his HBOT therapy and I think we're both SO looking forward to a break. It has been and IS an accomplishment. I have endured tears, screaming, ears popping, endless squirming & even frothing at the mouth when LJ's secretions get too voluminous for him to handle. And I wish I could say the time flew by, but at least there is a light at the end of the tunnel folks; next Friday will be the last session for a little while!! I find myself daydreaming about days where therapy ceases to show up on the schedule. I have glimpses of weekday "laziness". I imagine what it is like to not have to fight to do "spoon sessions" with Noodles and the thought of taking a leisurely walk together with Tango until we feel like heading to a cafe to meet a friend for a cup of coffee and a playdate. That's ridiculous though, right. I know it doesn't fit our "norm". But still, I feel so lucky that we've seen a little progress and we continue to have the time to enjoy life's little moments. Like LJ's two new teeth that have cut in about half way. Like when Nate sang Twinkle Twinkle Little Starto Lewis when he was grimacing in pain and clasping his chest with his fists towards the end of a feed. It was like magic. Lewis calmed down.I wanted to have LJ so he and Nate could have one another to love. Of course, they have both shown me such love on so many different levels. It's scary and awesome all at the same time. I wish I could have it all without having any of the fears. Wish Fairy, are you out there?
Today marks Noodle's 24th HBOT treatment-and his mind is clearly learning a lot of new things. 16 remaining sessions and then our dive will be completed! LJ is a lot more comfortable with the chamber now. We've also gotten used to a routine and every little bit helps. If LJ hasn't slept well or is too full (or has a huge blowout as was the case yesterday!) the session doesn't go well. Once those two elements are eliminated, he seems to be much more comfortable and even rocks a fantastic smile and babbles to us under his hood. Improvements of note have been much improved strength bearing his weight on his forearms. This has meant that has been doing the army-crawl all over the living room. Perhaps we are on the verge of crawling here, who knows? I think if it does happen I will perhaps fall over the edge of sanity!
Noodles is also benefiting from more relaxed hands. He has gotten a lot better at isolating his pointer fingers in order to experiment with different sensory mediums. And he is practicing using his weaker side~right side~a lot more too (below picture of him playing) I wish I could report that we've seen dramatic results on the eating-front, but unfortunately that's just not the case (we'll hopefully be reporting more on the Feeding Clinic front later this week). On the upside, he does seem to be quite "chatty" still so that's a positive. Now if we could just get him to master saying Mama and Dada :)
Today, we're celebrating love. It's in the little things. But oh, I do love these boys. Goofy, sweet, hopeful and they make me laugh. To love you must nurture one another, so you can grow through tough times. We've kept our dreams afloat and seen such courage from Noodles and compassion from Nate. I am grateful for this new perspective. It's taught me about what's important in life and how to breathe in every single moment- especially the hard ones.
Last weekend we made valentine cards together for Didi and Nanny. While it was hard to keep LJ's hand from fisting once I put the paint on his palm, I think we had a partial hand-print success (his is the pink one, Nate's is the red one- they both have big hands). What a beautiful moment that made me happy and full of love.
Josh, I love you more than artichoke hearts. I love you more than pedicures. I love you more than coconut cake. I love you more than dance parties. And I even love you more than our down comforter! One of these days I am going to pry our camera away from our sons and take a snapshot of you for posterity:) It'll be a picture of the man that is mine, and not that of a father who is best known for tickler, snow shoveler, bbquer, fixer, story-reader and human-slide.
Happy Valentine's Day! May your hearts be FILLED with love today.
The day before yesterday we got 2' of snow. Fortunately, we've been spared a power outage. Though Dominion did have to come out yesterday with a cherry picker since there was a broken tree branch on our power line to the house. I doubt they would have ever acted so quickly if we hadn't gotten Lewis on their medical priority list. Since Lewis needs his electric feeding pump as part of his treatment, he qualifies. Sadly, this didn't help with the big cedar tree that is down in our back yard-it's resting on my dogwood:(....The snow is coming down-today's estimate is another 10-20". Snowplows have even stopped until the blizzard conditions lighten up.
So we've hunkered down, done some reading, singing, playdough-making (yes, Nate turned intoan "apricot" color using the pink and green food coloring), slow-roasting (so far a Chicken Tagine one night and a Venison Roast tonight), baking (Nate has coined the new name for Dream bars_they are now referred to as A Wake Bars in our house), self-teaching how to reupholstery (turns out staple guns are fun for getting out pent-up aggression), doink-it dart playing and movie watching (Josh and I watched Inglourious Basterds, a film by Quentin Tarantino the other night. Really violent, but well-done)! My little snow men are climbing the walls. We're ready for the Great Thaw. At least tomorrow we might be able to go out sledding...That and dig out our cars. Until then, I think I'll go eat some more, and then sleep and perhaps proceed again 2x.
So we've stopped whining. Quit crying and we're trudging along. The annual state evaluation for Noodles a few weeks back had us reflecting on how much he has endured and triumphed over 2009. Here's a brief overview of what was said in their findings with regards to what we feel is his biggest challenge-EATING. The gross motor (Rolling? Check. He's started doing an army crawl to get to things on his belly; we are still working on sitting up AND walking no doubt) and fine motor is obviously still a large piece of the moving puzzle but once we can get Lewis eating everything in sight*@!, all possible future scenarios might be more clearly realized for Lewis.
He has made great strides in the last 6 months in all areas of development. Self-regulation has been slowly improving and recent months have seen the greatest changes (one has got to think some of the improvement is HBOT doing it's thing...but in the end the cause is irrelevant). In conjunction with Lewis' treatment team, we have been working on strategies to help him manage his GI discomfort through nutritional changes (Elecare formula rocks! as do Farrel Valve Bags) and sensory processing strategies. As Lewis has begun to use his body and voice more (listen to the below vimeo for evidence of his budding vocal chords) and more Recorded Sounds from LJ_February 7, 2010 from Jenn S on Vimeo.
he is now able to work through trying sensations and challenges without immediate physical intervention (i.e. holding, rocking, etc) from us. Lewis is now able to be soothed by voices and talking and also has begun to self-sooth by sucking on and mouthing his own hands. Lewis' sleep and reaction to tube feedings are much more appropriate and organized.
In regard to feeding, therapy has continued to work in conjunction with the medical and nutritional teams to achieve optimal GI functioning and nutrition. LJ, who was previously unable to tolerate the sights and smells of foods, is now expressing interest in handling and tasting foods (still primarily sweet potato, avocado, apple sauce and yogurt). He continues to be defensive orally probably attributed to his Mom's feisty genes, but is able to tolerate more and more flavors and oral input on a daily basis. Lewis has recently demonstrated the ability to tolerate a pacifier near his mouth and is even demonstrating some ability to use flutter-sucks on a pacifier. Noodles responds best to a natural, respectful and slow approach to pre-feeding activities...how civilized.
His future therapy will continue to focus on increasing his exposure to foods both orally and environmentally (sitting at the table, using his hands to explore food items), speech therapy and music therapy. Additional therapy will focus on increasing Lewis' grasp and trunk control to optimize his ability access food and facilitate healthy GI function. We might even be considering a day treatment program at The Center for Pediatric Feeding and Swallowing Disorders at St. Joseph’s Children's Hospital in Paterson, NJ. The Kennedy Krieger Institute in Baltimore still has LJ on a waitlist for once-weekly therapy. This other program is highly recommended by one of our feeding specialists and this would be a typical daily schedule for five weeks straight (and they can take him in MARCH!!)
9:00Arrive, check in with nurse or feeding therapist
**Please arrive promptly!**
9:15 Meal
9:45 – 11:00Other Therapy / Playroom
11:00Meal
11:30 – 1:30Other Therapy / Playroom / Naptime
1:30Meal
2:00 – 3:30Other Therapy / Playroom
3:30Meal
4:00 – 4:30Leave to go home
Here's one of the fabulous harnesses Didi just finished sewing to help him gain optimal postural control at the table:
I can vividly remember this time last year. I can hardly believe we've come this far. What an adventure into the unknown. I'm taking your predictions.
