Update

It's been awhile again since my last blog and I realized I didn't do a blog post after Ethan's last relapse in September. Ethan started having protein 2 days after he stopped the prednisone in August 2015. His protein went up and down for weeks until finally his body couldn't handle it anymore and he fully relapsed. With his latest relapse in Sept. 2015, his Nephrologist decided to increase his MMF to the maximum dose allowed, which is 1000mg twice a day. The hope was that this dose would help Ethan to finally get off prednisone. So we began the whole 12 week weaning cycle all over again in September and Ethan just took his last dose of prednisone on December 6, 2015.

The increased MMF has given Ethan a few periods of stomach pain and upset but after about a month, his body seemed to settle down and he has been doing really well. Although he has been getting sick every month since he started back to School. His immune system is quite suppressed with being on two immune supressive drugs. But we are thankful that he has avoided having any major complications especially when he has been sick.

Today Ethan and I headed into Children's Hospital for a check up. I am filled with joy at how well it went and thankful to see and experience today "the real" Ethan and not the steroid version. It's been 16 days since Ethan has been off prednisone and today is when I really noticed that he was smiling, laughing and joking with me like he used to. It's hard to explain to those who haven't been on prednisone or had a loved one on it for any length of time. But it truly does change their personality, they become moody, depressed and quick to anger to name a few.

I love how Ethan was joking with me today, careful not to hurt my feelings, whereas just a few weeks ago his sarcasm and comments often hurt. He didn't even know he was doing it and had a hard time understanding why I was feeling hurt. When he was younger, he would just cry and we had no idea what he was feeling. I am not sure which is better.... Anyway, Ethan told the doctor's that apart from being very tired, not sleeping and super hungry he says he isn't aware of his mood changes. But he said my family notices, ha ha!!! Yes, even his older brother notices the change in him. I am relishing in today and savouring the moment of how good it was to be with my Son. I pray that it continues!!!

Ethan's Nephrologists were very happy that he is now 16 days off prednisone and they are happy that he isn't displaying any signs of steroid toxicity. We have much to be thankful and especially when they tell me of how much worse it could be.  Ethan has been spared many of the really bad side effects and for that I will be forever grateful and thankful. His blood pressure is normal when so many kids suffer with that, his bones and eyes are okay and he is growing.

The doctor said that compared to many other kids, Ethan is growing at a normal rate. Which is good news and surprising because of all of the steroids he has had over his life. He is in puberty and starting to hit his growth spurt so as long as he keeps growing and doesn't stay the same height, they consider it a good thing. If he were to stall in growth, and he suffered some of the other issues, they would look at changing the MMF. They do classify Ethan as a frequent relapser and being steroid dependent, so we will have to see them every 3 months. I feel good about that though as they give him a thorough check up and make sure he is doing alright. We did end the check up with a blood test just to make sure his blood cell counts aren't too low. I don't know the results yet though.

For now Ethan will continue to take the MMF twice a day and we are taking it one day at a time. I don't know how long this period of no steroids will last. Every day I physically exhale with relief when I test his urine and realize he has made it one more day... That's all we can do for now, and we are going to embrace and be thankful for every day that he is off. Thank you for praying and continuing to support us. I don't know where we would be without prayer and the love of so many and especially our Heavenly Father. Who never once has left us to walk this road alone.
Wishing you all a Merry Christmas with your families,
Love Laura, Jeff, Adam & Ethan