Tests, tests and more tests

Health issues with Abby seem to come in waves. The past few weeks have been full of tests and worries about various problems.

The increase in seizures still hasn't been answered, although Abby did have another CT scan done this week which revealed no changes since her last scan. This is wonderful news! We have been increasingly concerned about the combination of her new seizure activity and recent, unexplained irritability. After missing a neurosurgery clinic appointment due to a canceled flight from California (another long story), we were finally able to confirm that her shunt malfunction is not the culprit.

Reflux has always been one of our enemies, although we never realized how long and how seriously it would affect her life. Thursday our GI doc performed a Gastroscopy (upper GI endoscopy) on Abby to check for damage from the reflux. The test revealed significant esophagitis. We got a picture of it and you can tell it is red and inflamed.
Her stomach looked fine; no ulcers. His recommendation was to place a gj-tube. This would replace her button with one that has two ports: one for feeding into the stomach (g), and one for feeding into the jejunum (j). Abby would be connected to a feeding bag and pump for 12-18 hrs a day. It would deliver formula at a slow drip into the intestines, bypassing the stomach. This suggestion raises so many emotions for us, the main one being a huge step backward from normalcy.

Because we want what is ultimately best for Abby in the long run, we asked if we could try the blenderized diet to see if that might relieve some of her reflux. He agreed to give it a 4 week trial before moving forward with the gj-tube. We've started blending up regular food for her! It feels so good to be able to give her good nutrition instead of just formula. So far she is tolerating it well. One main advantage is that this diet is much thicker which will hopefully prevent her from refluxing.
We've spent the past month or so introducing Abby to one veggie or fruit at a time to make sure she didn't have any bad reactions.

Abby has another EEG scheduled for the end of this month. This one will be longer (24 hrs) and will hopefully pick up the seizure activity she has during the day and at night. We are hoping this will give us the information we need to make the best choice for further treatment. Our Neurologist is recommending the Vagus Nerve Stimulation Therapy. As I've mentioned in previous posts, this requires minor surgery and an implanted device.

We continue to pray for wisdom. It is very hard to know what to do sometimes.

ps. The picture is of the kids in their new bike trailer! It has been so much fun riding together around the neighborhood.