Progress and Pumpkins

Faith is doing much better since my last post. She appears to be much happier and comfortable. The biggest issue we are having right now is her feedings. We have been able to increase her rate for her tube feedings but it is a very slow process in order for her to tolerate the increases. The past few weeks we have struggled with getting in all the calories she should be getting in a 24 hour period due to the slow rate in which we have to feed her.  Also, we have had more issues with reflux and vomiting. Thankfully, the past few days we have been able to get all of her calories in. Faith recently went to the doctor for her 4 year check up. Her weight was down and was concerning to her pediatrician. We feel that it is mainly due to her recent hospitalization, several days without eating, several more days without getting all the calories she needs, and reflux/vomiting. There is also concern that her constant movement is making it much more difficult for her to maintain her weight. Her GI doctor feels that if Faith continues to struggle with feedings that we need to move forward and get a GJ tube placed. We are trying to exhaust all other options first and are trying to avoid a GJ tube. We are not convinced that it would resolve her reflux. Additionally, she would be hooked up for feedings constantly which would be very difficult with the busy life Faith has with therapy, school, appointments, etc. Her constant movement would also make it very challenging. This switch would probably have us spending much more time in the hospital as well since it would require interventional radiology to put it back in if it would come out. We always make our decisions based on what is best for Faith’s health and comfort but we just can’t justify making the switch right now. We are hoping that Faith just needs a little more time to get back to tolerating her feedings better.

We were very happy to all get out of the house last weekend on a beautiful fall morning and head to the pumpkin farm! Faith and I decorated a pumpkin and played in the corn while Graeme and daddy ran around checking everything out. Graeme loved the animals and train. Here are a few pics:




Keeping the faith,