Of course the goal of the feeding clinic is going to be to wean Allie off the tube but I am not setting our goals too high or making unrealistic expectations with our first wean attempt. I have been in contact with the Children's Hospital of Wisconsin and talked to Dr. Fisher (our previous doctor) about their 2 week inpatient program. Their program focuses on behavior and it will be similar to the outpatient feeding intervention we went through in October 2009. Since we stopped receiving medical services at the Children's Hospital of Wisconsin a year ago, (our choice to leave) we will be set up with a new team of doctors (feeding team) and Allie will need to be evaluated and approved for the feeding clinic. I'm hesitant to go back there but we will not be moving her primary care there it will strictly be for the feeding clinic.
I have also been in contact with Marcus Wilken. He is originally from Australia but is now collaborating in the US with Spectrum Pediatrics in Virgina. He seems interested in Allie's case and I'm waiting to get more detailed information from the owner of Spectrum Pediatrics. I'm very interested in their program because Marcus actually comes to our home and helps wean Allie off the tube. He stays as long as needed and his program is based on the fact that every child feels hunger.
I have looked into other clinics as well but right now, I feel that these are our two best choices. I won't be making a decision until I finish getting information from both places. Like I said previously, I'm not setting our expectations too high and if our first attempt at weaning Allie from the tube doesn't work, that is okay. I know Allie is very stubborn and strong willed and I think she will put up a very good fight or just give in. Not sure what path she will take but we won't know until we try.
The decision to send Allie to an inpatient feeding program is going to be a hard decision. I know these feeding clinics can be brutal on children especially strong willed children. I have spent my whole life protecting her and once she's at the inpatient feeding clinic, I have to follow their rules. When Allie went through the outpatient feeding intervention at Children's in October 2009, it was one of the hardest things on me. Allie was not force fed but damn near close to it. Her intervention at that time was outpatient and it was a week long so I know this next intervention is going to be even more intense. I know a feeding intervention is exactly what Allie "might" need in order to eat orally. I also know a feeding intervention could take a turn for the worse and her behavior and feeding habits go downhill even more. Big decisions we need to make and I'm not sure how we are going to know what the right decision is.....
Look daddy is teaching the girls how to wear makeup - lol.
|Yes, Allie is really this tan or orangish color (not sure why but her carotene level is very elevated)|
|No, Chloe is not a ghost she just looks very pale in this picture.|