Wednesday, May 30, 2012


SO not even sure if I wrote on here about Sam's reaction to his IVIG a couple of weeks ago. Anyways due to that we had to go in and see his immunologist today. I will be honest, the plan for us was that the may IVIG was going to be the last one if Sam was illness free the last couple of months. I had that so stuck in my head and was so looking forward to our break, but there were too many things stacked against us:-( So not only are we not done, we are going to try a new product and we have to go back into Boston Children's to do it. I love it there, I really do. But financially it is so hard to be there. Parking is astronomical and they don't feed him while he's there, so then there is buying food, gas to get there, babysitters for the other munchkins, etc etc. I am hopeful that we can switch products have Sam do well with it, and then switch back to our local hospital. His immuno was also concerned about his skin and is sending us to a dermatologist. We actually arent able to get into that doctor until July, but that is ok. WE have tons of appointments going on in the next few weeks. And the BEST NEWS OF THE YEAR: Sam's repeat biopsies for the eosinophilic disorder have come back negative!!! I am beyond thrilled and so thankful. So the dietary restrictions have worked and now his gut is healing! I am just so excited about it. So we will meet with the specialist team, to see where we go from here next week. His regular GI seems to think that we may be able to add back a food that we have taken out. But that will all be decided next week. He weighed 44lbs exactly today so he has gained the weight he lost back almost completely, and is up to 47 inches I think!!!

1 comment:

  1. That's fantastic news!! What Ig is he on? While in the hospital for IVig, the boys were on Gammagard. We completed their first SCIg last Wednesday and they've been put on Hizentra. So far I like the SCIg because it only takes 1h30m vs 3h for B and 4h for P. sorry Sam is having to continue IVIg. Have you guys ever tried SCIg? Just curious what your experience was if you have... Thanks!! As always, you guys are in our prayers!