Yesterday was a long day in Iowa City. Doctor told us last month that maybe after this appointment she might let Lance go a little longer between appointments but that is not to be the case yet. It's kind of funny, just the other day we were talking about being thankful and I realized I need to be thankful for any time I get with Lance even if it is just a doctor appointment and guess what..... I get to do it again next week!! God is good and has a sense of humor!
Lance came down with another cold virus so couldn't get his shots and his IGG level is 50 which is way lower than the normal of like 700 to 1600! They decided to send us up to the infusion center and get IVIG in hopes of helping boost this part of his immune system and help him fight viruses. Practically everyone I know has had something lately so we didn't think he was doing to bad but obviously they are concerned about that low level and the fact that there are still a lot of viruses going around for this time of year. After waiting ..... they came out to tell us it was to late to start as it takes at least 4 hours and we wouldn't get done till 9 pm so we will head back down next week for that and then at next month's appointment Lance will have all the regular test he gets each month, but then he'll have a lung test and then head to the infusion center for another IVIG.
Interesting that his GVH seems to be settling down some, Thanks for your prayers! This means they will let him try and get off the steroids!!! YES!! Please pray for his energy level as he tries to get off steroids in the next month or two, that's the tough part.
Doctor was smiling and shaking her head once again at him. We were discussing how tough the last couple months had been with all the meds taking their toll on his body and energy level........and something is causing not only vitamin D defiency but others as well........ What to do?? Well I was telling her how Lance decided that resting wasn't working so this week he set himself up a schedule for exercise, rest and eating.... the exercise is his own schedule and Elisabeth has been helping him with the eating and I'm in charge of the resting!! He wants to start jog/walking even if it is just a little at a time to build up his lungs ( Yes, I said jog/walk....Lance's mind set is if you are going to try you might as well give it your all...Like that isn't what he does already!!) along with weight lifting to help with the muscle loss from the steroids. My part is to make sure he doesn't over do it....Yeah Right....Like when I used to tell him to wear a mouth guard and face mask in hockey! He SO wants to play hockey again! Doctor was calling him Marathon man because he just doesn't stop even when most all the rest of us would sure want to just give up. I think she enjoys having someone who is so determined.....It seems to be one step forward and two back.....three forward then one back... and on and on.... sooooo slow! But when we look back over the last year you can see the improvement just MUCH slower than he thought..... and no hockey YET! He is working really hard to do good on the next lung test.....Please pray that his body will cooperate with his determination! Thank you once again for all your love and prayers for us... we feel them and thank God for you all! --- Penny
First of all thank you to everyone for your thoughts and prayers over the last year. We have decided to create a blog to have an outlet for anyone who is interested in updates on Lances condition a place to come and be informed. The title of the blog "A future and a hope" comes from Jeremiah 29:11, which is a verse that has given our family alot of comfort through these challenging times. Because as my Dad has said, no matter what happens we have already won! I would encourage you to pass on the location of this site to anyone that you may believe would be interested in updates. -Justin