Here we have made it through another month with out any infections! So far we have dodged the flu but it's still early in the season. His "pokies" aren't going as good as they were, we hit a bad spot one week that caused a lot of pain and now the fear has set back in again. We are still making small steps from where we started. I have discovered though the further I deviate from the middle of him belly the more it hurts, so I try to stay as close to the belly button area as I can.
He took his 36th infusion this week! I can't believe that much time has past!
In these 36 weeks we have been on antibiotics twice. Not to bad considering he started on antibiotics at 6 weeks old and has had very few breaks off of anitbiotics in his 6 years of life up until 36 weeks ago.
He is still being very cyclic. We infuse every Thursday. By Tuesday he is getting the congestion and the coughing that lasts until around Sunday. This morning, Saturday October 10, he had to get up early because he said laying down was hurting his lungs and making him cough. I suspect if this week goes like all the prior weeks he will be "well" again for his two days of the week then start his "coming down" with something cycle on Tuesday again.
He goes to get his blood tested on this Wednesday to see if the amount of Vivaglobin needs to increase. If we do have to get an increase Jacob is going to be MAD since he is at the max amount of one site and will have to move to two sites each week.
I go get the rest of my blood work done in 2 weeks to see if he has XLA instead of CVID.
We have been put on flight restrictions with him over the winter months and we can do NO international travel. Since his body doesn't make the proper titer response he can become an open book to all the odd diseases that we as a nation get vaccinated against. Many people don't understand this!