Ethan's Checkup at Children's

Ethan had a fantastic checkup today with his Nephrologist, I was so blessed and thankful to have my Dad join us for the very first time! It was a long wait but it was worth it, we were even treated to lunch after. I came away feeling very satisfied, that all my questions were answered to the best of their abilities. The good news, is that Ethan is doing fantastic, since he is off prednisone, he is now, no longer considered Immune suppressed. But he is considered to be, High Risk for the H1N1 flu. They are recommending that Ethan as well as Jeff, Adam and myself get the H1N1 shot. Getting the the H1N1 shot has it's risks, and can potentially cause Ethan to relapse, anything that stimulates the immune system is a trigger for Nephrotic Syndrome. I did discuss my concerns about what is exactly in the shot, Thimerosal and squalene to be exact. We were told that the current batch of H1N1 shots, that has just been released on Monday, does contain these harmful ingredients( in my opinion anyway). If we were concerned about these ingredients, he said we could wait until they release the second batch of flu shots which do NOT contain these ingredients, and that is the shot he as a doctor will be getting. We have much to consider and weigh as to which road we take, and sadly it doesn't feel like either is a good option. Thanks for your continued prayers for Ethan, we are so thankful and amazed that he continues to do well. Unless Ethan has problems we have now graduated to see his Nephrologist in six months. YAHOO!!!!!

Thankful

I haven't updated in a few weeks, mostly because there really hasn't been much to say. Ethan is doing fantastic, so much to be thankful for. Which is the reason and inspiration behind this post, being thankful for each and every day that he is off prednisone. It has been wonderful to have some space and perspective to reflect on all that we have gone thru these past few years. I have enjoyed that Ethan has only missed 1 day of school so far, and I find myself checking my cell phone less and less to see if the school has called. I am finally starting to feel like I can relax and not be on full alert all the time. I was never really able to make plans for my days, when the boys were in school, because I never knew when I would get a phone call to come and pick him up. Although Ethan still says he doesn't like school, he is going, and without much complaining, which is a huge improvement over the past 3 years. Although this school year has not been without it's challenges, nothing is ever easy! I am so thankful that Ethan is NOT on prednisone at the moment, Grade 3 moves at a much faster pace. If he were on prednisone, I know it would make his adjustment to Grade 3 even tougher.

Today also marks the one year Anniversary of my Grandma Douglas's passing, my Mom's Mom. She was a special woman of God, and I really wish she could have seen how happy and healthy Ethan is today. You see, my Grandma and Ethan shared being on prednisone together. She understood all too well what life was like on prednisone and we would often compare the side effects each of them was feeling. I miss talking to her, even though she had a hard time hearing these last few years. She was a very caring and joyful woman despite her many health challenges, and she is the kind of woman I aspire to be.