Thursday

Rob stayed overnight with James last night and I was allowed to sleep in my own bed for a change. Rob took the day off to so he could go with James to the Video Swallow Study since I am not allowed in while it was being done due to radiology and being pregnant. This meant I also got a day off from being at the hospital.

In the morning I went to see our pediatrician. I had booked an appointment last week when I spoke to her, thinking we would be home by now ... but no such luck. I decided to keep the appointment so I could go over things with her and get her opinion/insight as well as keep her up to date on our side of things. I must say that we are much happier with our current Team and they seem to be doing what they can which also relieves our frustrations. We basically just went over all that is going on. She did suggest that even if we were to proceed to a Lung Biopsy it would be better to do it when James is healthier ... otherwise we could get false results because we would be picking up more of what has recently irritated him and not the cause of his unlying lung problems. She also thought it would be better to have a second opinion first, another opinion on if the biopsy is necessary and also to make sure that whent he biopsy is done they look at all possibilities. She also gave a few other suggestions and information about various drugs and treatments.

Rebecca came home around noon hour and Marietta after school. Rob and James came for an LOA at supper time ... so after 2 1/2 weeks we were able to have supper together again. The kids had a chance to play together and feel like everything is "normal". It is unlikely James will get another LOA for a few days seeing as we're counting on the bronchoscopy setting him back a bit ... so we're enjoying the time we have.

The Video Swallow Study went relatively well. He did cooperate enough to get some pictures ... altho his ears are too good and he would hear the machine go when they went to film and would turn his head to look at it ... thus not allowing them to get a good picture. I will get a chance to look at the video tomorrow, but we've been told they did not see anything go into his lungs.

I also got a chance to talk to our Endocrinologist today to get his input on James' lack of growth. We already know that James' thyroid is fine, but our Genetic Doctor express some concern that his hormone levels remain low. The Endo Doc said that this often happens when unwell or not getting enough nutrition. For the first couple year growth hormones are not as important but nutrition is important. He is just over that two year mark, but considering his nutritional struggles all his life he feels this would likely be more the issue. He also said that if it's a hormone issue then you usually still see weight gain, but not height ... James is lacking in both areas. There are additional tests that can be done, but they are not just simple blood work, they require a good part of a day to be hook up to IV, given special meds and then blood work. Since James' nutrition levels have been low he would first like to see his nutrition levels up to par and then we can retest his hormone levels to see what they are doing. Yesterdays blood work showed that for the first time James' nutrition levels were up to par, likely do to the additional feeds he is not getting, but we have to see that consistently before we retest the hormones ... and of course, if he grows there won't be a need to retest.

And now I must go bring Marietta away and James back to his second home. Grandma is coming to pick up Rebecca for the night and tomorrow ... she can't wait ... good thing we brought her home, just so she can want to go away again :)