Looking Back: 3 Families, Siblings, Caregiver Training, Future Treatment and Prayer

3 Families: One of the blessings of Eating School was meeting the 2 other families facing the same struggles as ours (and more). Both of the other children had gone through substantial medical procedures and their young lives were nothing short of miracles. We got to know each other piece by piece that first week as we had little to do but wait and visit. They soon felt like extended family, asking how my weekend with my oldest son (coming home from college) went, and how my other children were. I was interested in their lives and families too. I felt their pain as they went through their own learning sessions and their excitement when things went better. I learned a lot from them. We plan to get together sometime for an Eating School Reunion. I'm looking forward to it and ZZ will be excited to see them too.

Siblings: When I looked into the feeding program at OCH initially, one of my concerns was what to do with ZZ's 4 year-old sister, MM. His 2 brothers are older, one is in college and the other 12 years old so he's in school all day. The social worker who talked to me said that it if I needed to bring her for some of the time, the first 2 weeks were most doable. She just needed to know and she could line up some of the volunteers at OCH to watch her during the times I was observing or talking with the therapists. Between her older brothers, our friends, and Grandma, I was able to work out childcare for MM at home the first 3 weeks. For each of the last 2 weeks my 2 sisters came and helped watch her there in Dallas. They just came with us to Eating School and spent time with her playing in the playroom, the playground or going to the park. She is quite shy but soon warmed up to the other little girl in the program and they would watch DVDs together on her breaks. It worked out quite well and I got a visit from my sisters in the deal!

Caregiver Training: The OCH at Baylor feeding program will train 2 people in feeding as part of the intensive day program. Each of the other families had more than one caregiver take turns with the training. The other little boy's family always had 2 people at Eating School. Usually it was his Dad and his Grandma. They were the primary trainees. His mom came at least once a week and trained also but she already had learned much of the method in their outpatient sessions so it was doable. His grandpa came to lend support a couple of times and other grandma came a couple of times also. The little girl had her mom and her babysitter train. Her dad came a couple of times to observe and her grandma also. I on the other had was the only trainee for ZZ. My husband came once and observed but when I asked if he could try feeding they said since he couldn't be there more, he wouldn't be able to learn that quickly. Looking back I don't know that we could have worked it out any other way with his work schedule, but I do feel the pressure of being the only one doing the feeding now and wish there was a way to have a back up.

Future Treatment: At discharge the other families were put right into the outpatient program where they will come for therapy once a week at OCH while continuing the feeding sessions at home. Since I am so far away it was recommended that I keep up the therapies on my own except for Occupational Therapy. They recommended that I find an Occupational therapist to do more sensory therapy once a week but not to have anyone do any feeding therapy at all. This is because they have such a specific behavioral method that it is better for me to do it than to have ZZ confused by another method being used. One of the unique things about OCH is that they have the psychologist on board. She teaches, observes, and gives feedback so that the behavior modification component is always foremost in the feeding sessions. At my husband's request I did ask the speech therapist if I could come in once a month to brush up on my technique and learn how to add new foods, textures, etc. That then became the plan for ZZ's future treatment. I also have email and phone access to the psychologist and OT. The goal is to bring ZZ back in 8 to 10 months and have him take part in the inpatient feeding program while weaning him off of his tube feedings. In order to qualify for that he will need to be accepting a variety of foods and textures.

Prayer: I can't end this blog without acknowledging the power of prayer. Many friends and family members prayed diligently for ZZ to succeed in this program. I could feel the sustaining power of those prayers. One friend said her children prayed for him every day at every prayer they gave. I myself prayed fervently that ZZ would do well, that we would be safe, our family at home watched over and that I could make the many drives without accident. While at Eating School I studied Galatians in the New Testament and realized how strongly I could feel the fruits of the Spirit explained in Galatians 5 (love, joy, peace, long-suffering, gentleness, goodness and faith). I thank my Heavenly Father for answering those prayers in our behalf and sending the comforting gift of His Spirit.