We are gearing up for Christmas and to see grandma in Florida. Jacob has had to make sure he tells Santa that he won't be at home but instead in Florida.
He has been doing so well lately. He last levels came back at 1196 and he has managed to stay well. We have also gotten many phone calls from his school altering us that kids in his class have gone home sick with the flu and so far we have dodged the bullet several times.
He is still having a lot of anxiety over the needle part of the infusion and he is now seeing a play therapist that is helping him understand and help him work through his fear and anxiety.
His next scheduled appointment isn't until February and if he makes it that long with out being sick then he has made it well over 6 months. February will be 1 year since we started his infusions and we have gone from being constantly sick unable to be off any antibiotics for more than 2 days with out getting sick to an astonishing 3 total infections in a 1 year time span. If only we could achieve that goal without the infusions but it will never be. I am just thankful that we caught his disease at an early age so he could start getting treatment he now has the potentional of living a full life instead of a painfully short, that would have occurred due to irreversibly damaged internal organs caused from repeated and severe infections his entire life.
Everyone have a Merry Christmas. I know we will !!
Thanks for your comment today. I have just been reading your blog and have realized how easy it is to take good health for granted. It is always inspirational to see families like yours dealing so well with Jacob's medical condition. He appears to be a trooper. I wish you guys a Merry Christmas and an infection free New Year.
ReplyDeleteHello Lisa, my name is Denna McGrew. I have an 8 year old son, Ethan, who also has CVID. Ethan received 26 ml of Vivaglobin weekly. Prior to that, he did IVIG. We live in Louisiana, but his Immunologist is in Dallas, TX. He was diagnosed at age 6 after a nasty bout of pneumonia. He too has literally been sick since birth and experiences chronic asthma and joint inflamation. On Sept 8 of 2009, we took him out of public school. Even with the Viva, he was constantly sick and missed 100+ days of kindergarten and first grade; he's currently in 2nd grade homeschool. This has been quite an adventure! Check out Ethan's blog at HereIAmDownere.blogspot.com. Ethan has never met another child with CVID or one who uses gamma. Maybe the boys could Skype each other?
ReplyDeletePraying for health for your family.
Sincerely,
Denna