Here’s an update from Chelsea on her and Davy’s time at OCH.
Today marks 10 days since Davy and I arrived at Our Children’s House for the intensive feeding program. Almost everything has gone smoothly and really well. Davy has fully adjusted to the busy schedule. I am learning how to use my time apart from her and with her. We have figured out laundry, meals, how to share a room and run errands, met new friends and I have officially returned to the college days of community showers and learned the nearest coffee shops.
Honestly, I couldn’t speak higher of our time here. The staff is so hospitable, considerate, through, thoughtful, understanding, supportive and more. Our stay holds the normal difficulties of any hospital (loud sounds when napping, interruptions, not being on your own schedule, etc.) but overall it’s been good here.
A Day In Davy’s Shoes
To give you a glimpse into our day I have shared Davy’s schedule below:
9AM – Oral Feed
9:30AM – Gtube Feed
10AM – Occupational Therapy
10:30AM – Physical Therapy
11AM – Speech therapy
12P – Oral Feed
12:30P – Gtube Feed
3P – Oral Feed
4P – Gtube Feed
6P – Oral Feed
7:30P – Gtube Feed
It was quite a transition but now it feels like our new normal. As you can see Davy is having more exposure to food and being pressed more than ever to take food by mouth. The practice they are using on her is simple but used multiple times a day everyday has shown it works.
Davy sits in a high chair with the same speech therapist or feeding tech in the same room everyday. I am not in the room with her (yet) but can view the session from another room with a window that looks like a mirror to Davy. They allow her to play with a toy or watch something on an iPad while they feed her. If she refuses or gets distracted they simply tell her they will take it away if she doesn’t take her drink/bite. If she takes the drink/bite she continues with what she was doing. If she doesn’t take her drink/bite they remove the toy or turn off the iPad and tell her again to take her bite to have them back. Simple right? But over and over again for a small toddler and it’s working, at least for our girl.
We could see a small change in just the first day. With small progress in four sessions, over a number of days, with a regimented schedule our girl is now taking more by mouth than she has ever before. Today, I met with her team for a weekly discussion and evaluation of her progress. They are extremely pleased with her response to the therapy. They explained this more in full, which held really encouraging insight. However, the most encouraging part we wanted to share with you!
As of this afternoon, we are decreasing the amount of nutrition Davy receives through her g-tube by 25%! The reason being that she is taking that many calories by mouth now! For perspective, we arrived with Davy having taken maybe 5-10 mL (1/6 – 1/3 of an ounce) of fluid by mouth in one sitting. Today, she drank almost 3 ounces in one sitting AND ate more than an ounce of greek yogurt in the same sitting!
This is truly miraculous for Scott and I. It’s possible we will bring our girl back to Austin not using her g-tube! Can you imagine??? Tears are welling up in my eyes now as I even think of the possibility. We don’t think it an accident or mere chance we are here and God is moving at this time. We think it’s His complete grace, wisdom and kindness. Scott and I started praying for Davy to eat fully by mouth by her 2nd birthday 360 days ago, when she turned 1. Today, we are 5 days from her 2nd birthday.
We believe He listens to our prayers, knows the desire of our hearts and works all things according to the counsel of His will. We don’t know if we will leave here with our girl taking all of her nutrition by mouth but tonight we are rejoicing, giving thanks and entrusting our hearts to Him believing He is good.
Please join us in praying for –
- Davy’s growth, comfort and enjoyment in taking more volume of food by mouth. New textures and flavors can be scary, uncomfortable or difficult.
- Wisdom for her speech therapist and care team.
- God’s presence and comfort at OCH. Parents and kiddos are facing all types of challenges around us and it can still be really difficult and painful for many to be here.