August 2, 2011

We have a very busy several months. We went to Pheonix for the IDF convention and, once again, got a lot of good information.

Lately as Jacob has been infusing he gets these hard knots under his skin, that he call nickles, that stay for several days to a week after infusing. Theses knots also hurt him a little. While at the convention we learned that the needles were to big for him, adults were on the same mm. We have gotten new needle sets and he still gets the, nickles, but they don't hurt. (One more thing to ask the Dr)

His most recent IGG levels came back at over 1300 and he hasn't been sick, on antibiotics, since February! He has had a few asthma flare-up but only very minor.

He is still doing the infusions like a champ and take approximately 2 hours to complete the infusion. We have have discovered if we go any faster than the rate we are currently at he gets migraine headaches that will knock him out for a long while.

We are scheduled to go to Alaska in September, just 1 month, and we are all so excited.

April 4, 20

It's been a long time since I have posted but Jacob has been doing very well. He has a few infections but nothing severe and most importantly we have been able to stay out of the hospital since June! His asthma been flaring up a little more than usual lately but with a few tweeks to his mediction and it appears to have gotten under control. His migraine headaches have finally started to subside. He was getting full migraines atleast once a week with all the classic symptoms. rough on anyone but especially a 7 year old. His doctor has drastically slowed down his infusion from 45 minutes to 2 hours. In the beginning we had very little change in the headaches but in the last 6 months they have started coming less and less. Also, a huge step this year is we finally (so far) have not gotten the flu OR RSV. I monitored the flu outbreak and held off on the flu shot until as late in the season as possible, since everyother year he had lost all his titers to the shot and got the flu in Feb. every year since he's been born. In June we go to the IDF seminar and I hope to have a lot more knowledge about the disease my son has.