A Proposal...

Dear Friends and Family:

As many of you already know, Myla’s recovery from open-heart surgery on December 22^nd has been quite remarkable. Our little Bean has more resilience than her mother and I combined! Many of you also know that the remaining battle that the Roth’s have to fight involves feeding. At this point, Myla has been seen by 3 different feeding therapists and has had 4 different feeding evaluations. Recently, her intake has gone up modestly (she was taking about ½ Tablespoons of baby food per day, and now she takes about 3 Tablespoons per day); however, we feel that we have hit a plateau. Myla continues to struggle to tolerate her tube feedings consistently. She vomits about two times a day. Words cannot explain how emotionally deflating this is. We are now exploring other methods to encourage Myla to become an autonomous eater.

I have been doing a great deal of research regarding a method that was developed at a children’s hospital in Graz, Austria specifically aimed a weaning infants and children off of their feeding tubes. This method involves gradually decreasing Myla’s tube feedings about 10% per day until she is receiving about 50% via her tube. While we are doing this, we are allowing Myla to explore the world of food and drink in a self-directed, non-threatening manner. As she learns the joys of eating, we will continue reduce to her tube feeds until she no longer requires them. Sounds rational, right? We hope to hone in the human instinct to eat and reconnect Myla with the peace and joy she received from eating early on in her life. Of course, there is some risk involved here. We do expect that Myla will lose weight in the short term. We also have to be on constant lookout for signs of dehydration.

Lindsey and I are reaching out to you for support. We have read the research and immersed ourselves in the stories of other children and families who have engaged in this type of wean. We feel that we are ready; however, we know it will not be easy. There will be times when we will be overcome with fear and anxiety. There will be moments of sadness and frustration, but we hope all of these negative emotions will be erased by Myla’s spirit and perseverance.

We will definitely be calling on you for emotional support during this time. If you have babies or toddlers, we may call on you and your children to spend sometime with us at one of our “play picnics,” where Myla and friends can touch, smell, play with, roll around in and hopefully eat some food (make sure you bring a change of clothes). If you don’t have babies or young children and have some time/energy to help out, there will be many dishes to be done, carpets to be cleaned, and laundry to be turned over. There will most likely also be a need for shoulders to cry on. If you are not local, perhaps you have some good ideas for fun food projects that could be edible for a 9 month old or perhaps you know a recipe for a tasty puree that Myla could handle. We are not focused on the nutritional value of the foods at this time.

If you have any desire to be a part Myla’s journey to becoming an eater, you can email me at scottrothpsyd@yahoo.com or Lindsey at lindseym523@yahoo.com.

Here is a great blog about another family that successfully weaned their little girl. http://www.franklyfrankie.com/

PS...below is the proposed plan.

1. Stress-free play picnics everyday. Myla can explore food with her hands, smell it, and taste it.

2. 4-5 feeding sessions where Myla is exposed to foods in a stress free way. She can refuse but when she accepts, verbal excitement and praise are given.

3. Can start offering food/drink on the first day of the wean or wait until day 3.

Indicators for Stopping Wean:

1. Weight loss of 10% initial body weight. We will do weight checks 1x per week.

2. Signs of dehydration

3. Parental Decompensation

Pre-Wean	Day 1	Day 2	Day 3	Day 4	Day 5
105	65	25	X	X	X
180	180	180	155	115	90
180	180	180	180	180	160
180	180	180	180	180	160
180	140	100	80	20	X