Keean continues to take this steroid daily. He is also on another medication that increases his appetite and calms his gut a little from being inflamed. We have had a lot of ups/downs with his weight gain and his health in the past year and Keean remains undiagnosed besides him presenting symptoms of AIE. We have spoken with a doctor out in Massachusetts who will be happy to see us if Keean's symptoms act up again and we are desperate for answers. Keean still has his feeding tube as of today, 11/19/13 and we use it mostly for his medication administration. He is 2.5 years old and almost weighs 25 pounds. He works hard at gaining his weight. He continues to have PT come in and work with him on physical strength and will start OT again next month to work on his strength in his hands.
He is a complete goof ball. He likes to make people laugh and entertain. If he sees someone is laughing at him it only gets him going more. He has started to get into the terrible 2's a little by pushing his limits and beating up his baby brother (who is now 7 months old).
Our plan as of right now is to keep an eye on Keean and his weight. In the Spring we are going to do another biopsy to see how things look. Because his steroid can cause dependency, we are going to start to try weaning him off of it after the biopsy. We will then do another one next fall to see if things look good without him taking the steroid. Of course it makes me nervous messing with things and having him put under 2 different times, but it will also be interesting to see how things change (or if they do) once we change his medication.
Keean did have his blood levels drawn again after having to have his immunizations re-done and his levels look significantly better......this means he is starting to respond to his shots and the doctors are thinking that his immune deficiency stuff is actually due to his malnutrition and his GI tract not functioning properly versus and immune deficiency causing his GI tract stuff.
We have been on quite the ride with this little man. Thankfully, we are going up hill WAY more frequently than down. I feel content with where we are right now. He is a very typical 2 year old who pushes his limits, says the funniest stuff, is curious about EVERYTHING around him and loves to snuggle. He is addicted to his nuk and still takes a bottle. He won't take his formula from a cup and his formula is a HUGE calorie boost for him. (The formula he takes is actually called Elecare Jr. and is made for kids his age). He goes into the bathroom when he has to go, but refuses to sit on the toilet and he LOVES crackers. There are still things we don't give him and planning a meal for him is tough, but I don't really care. He is with us......and there were numerous times I wasn't sure we be able to say that!
I thought I would share a few of his 2 year pictures. He LOVED posing! :) The first one is how he shows people that he's "2".