Rachael and I were able to speak with some specialists yesterday from outside the Clinic in order to get a second and third opinion on course of treatment. Both doctors that we spoke with agreed with the course of treatment they are receiving. I personally spoke with a doctor last night that was very knowledgeable about myasthena gravis. He said that it may be difficult for them to get rid of all the antibodies in their blood and that it will take some time. There really isn't a set time period. He said that once the antibodies are out of their system the improvement should be exponential. He said the fact that the babies have gained weight is important because it suggests that they have the ability to clear the antibodies themselves. If the antibodies are not being broken down sufficiently in time, then we may want to consider a transfusion, but at this point he agreed with all the other doctors that it isn't necessary.
The discussions with other doctors helped us out a lot in the sense that we know that we are doing what is right for them, and that we are doing all we can for them. So nobody can really say for sure how long it will take, but the good news is that once they are gone they will be fine. It could be a while, and by a while I mean months. I expect them to be there for a long time to come.
Jack is keeping us on needles and pins a little. Although he is doing fine, he needs a lot of attention to keep the mucus out of his throat. So obviously the most important thing is to keep him well attended while the antibodies are breaking down.
Riley is now 5 lbs 10 oz and Jack is 6 lbs 2 oz. So Riley has gained on Jack quite a bit, but Jack went down to 5 lbs at one point and has moved himself back up.
They both got new feeding tubes today. Unfortunately for them the are thicker and heavier. They got new tubes because they have the feeding going into the bottom of their stomachs to help bypass the severe reflux (also common with their condition) and it should help them with their weight gain.
Don't Worry Baby