January brings in a round of doctors visits for Rebekah. I know, what's new, right? :) This coming week Rebekah will see her pediatrician (for a very belated 15-month check up), her audiologist for a re-check of her ears, and her gastroenterologist for a routine visit. We are not anticipating any changes or issues at the pedi or audiologist appointments. During the GI appointment, I am hoping to discuss a plan to wean Rebekah to a much lower volume of formula through her g-tube, and ultimately, a plan to wean the g-tube use permanently. After being given the go-ahead from Rebekah's cardiologist to cut back her g-tube feeds, we have decreased the volume Rebekah gets overnight from 40 mL's per hour to 35 mL's per hour. I know that doesn't sound like much, but over the course of her 12 hour feed, that adds up to two ounces less per night. And Rebekah is definitely responding to the decrease by eating more! Like all of us, she has days when she eats more and days when she eats less, but overall we have seen an increase in the volume of food she is taking in orally. Please pray that this continues and that Rebekah continues to make forward progress in the growth department while decreasing her g-tube feeds!
Rebekah also has a pretty significant cardiologist appointment this month. On January 11 she will go in for a regular check-up and echocardiogram which will tell us if the oxygen therapy is doing anything to help lower her pulmonary hypertension. Please, please pray that her numbers have begun to come down. Pulmonary hypertension will take a toll on Rebekah's body at some point, and we would love to see those numbers lower. In the same regard, please continue to pray for wisdom for all of Rebekah's cardiac team in knowing when/how to treat her high pressure.
Also on the calendar for January is a follow-up appointment with Rebekah's ophthalmologist. We last saw him in September and decided to wait on any possible treatments until after surgery. Now we are post-surgery, and we will be discussing possible patching and/or glasses to try to strengthen Rebekah's right eye. I have noticed that her right eye has been turning inward more than before, especially if she is looking at or playing with something closer to her face. I am definitely going to be mentioning it to the doctor at our appointment.
One other thing that is not on the schedule, but will be soon is a trip to see the orthopedic doctors at the Shriner's Hospital here in Greenville. Our physical therapist has mentioned it a few times, but again, we were waiting until Rebekah was post-surgery to schedule that appointment. In the last few weeks, Drew and I have felt Rebekah's hips popping when we play with her. It is probably nothing of significance, but we want to make sure there is not a problem we need to address.
Rebekah is all cleared to begin her therapies again this week. We are excited about that! It will be good to see our therapists again. And I must admit, I'm anxious for them to see how far Rebekah has come since surgery. She is really beginning to take off in all areas of her development.
I guess that's all for now. Rebekah has been well since her last hospital visit, and we are praying that continues! For all of our SRBC family, please know that if we are not in services it is because we are trying to keep Rebekah well. Happy New Year! We love you all!
Drew, Nancy, Zac, Justin, Aaron, Caleb and Rebekah Grace
