6 Months and Counting

We are continuing to celebrate Ethan's good health, he has now made it just over 6 months off all his medications. This is a huge milestone as he relapsed last year after 5 months of being off his meds. The longest he has ever made it off is 14 months, we are pushing forward towards our new goal of one year. Hoping and praying that this is the end of Ethan's journey with Nephrotic Syndrome, but if it is not, we are so thankful to have been given this precious gift. School has been going very well for Ethan, he still does not enjoy going, but at least he feels so much better, which is half the battle. I can now wave goodbye and he will smile and wave back instead of crying and begging me to take him home. One verse that I have been reading over and over again is James 1:12 Blessed is the man who preserves under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.

So far so Good

It has been a few days since Ethan has had his H1N1 vaccination. I am happy to report that he didn't suffer any side effects other than a sore arm for one day. I have been keeping a close eye on his urine samples and he continues to be negative, in spite of his shot. Which is fantastic news!!!! Adam is doing better, his fever went away on Saturday and it appears that it was just a cold. There are so many other colds and flus going around, it is rather hard to determine exactly what he had. But I am thankful that he seems to be all better.

I know I keep saying this, but I am so very thankful to be able to watch my son enjoy being a normal boy. There isn't a day that goes by that I don't thank God for giving us this precious gift. At our recent visit to Children's Hospital, the nurse told me not to get discouraged if Ethan should relapse again. I later wondered, why would she tell me that? Did I appear too happy about his progress? In the past I have spent too much time borrowing trouble from the next day, for now, I am trying my hardest to focus on today, to enjoy it fully, to not worry about tomorrow. Some days I succeed, and other days I fail miserably.

We Did IT!!!!

I thought I would let you all know that we did decide to vaccinate Ethan for the H1N1 flu. He received his shot last night at our doctor's office. He did very well, he is always so patient at waiting, we had to wait for about an hour to receive his shot. I could tell he was getting nervous though, as the little kids kept coming out of the doctor's office crying. He kept asking me if it was going to hurt? Thankfully, I did have some left over Emla cream that I used when he had all of his blood tests. I was able to use some of the cream to help lessen the pain of the immunization just a bit. Ethan said it still stung but not as bad as without it would have been, and so far the only complaint that Ethan has, is a sore arm.

I am praying that Ethan does not relapse from this shot and that he doesn't have any adverse reactions to it as well. I have been praying over both my boys constantly that they will be protected from this flu and any complications arising from it. I can tell you that I feel a great sense of peace and that a huge weight has been lifted off my shoulders. Adam and I still have to wait until we are allowed to get the vaccination, I hope it isn't too much longer.... Adam woke up with a mild fever and a cough this morning, praying that it is just a cold and nothing else. For now, I am so very happy that this very hard and stressful decision is behind us and so very at peace with the decision we made!

Decisions

I must say that I am so very tired of trying to come to a decision on whether Ethan should or shouldn't get this H1N1 vaccine. There are risks on both sides and we have been going round and round trying to figure this out. If Ethan gets the vaccine, he risks a potential relapse, yet on the other hand if he gets the flu he risks the same or worse! There doesn't seem to be any good way around this. Our doctor's office only offers the vaccine once a week, so if we want Ethan to get it, we have to decide by tomorrow afternoon, or we will have to wait another week. Keep us in your prayers as we continue to wrestle with this decision.

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.

4 Months

Ethan is now entering his 4th month off all his Kidney medications, I can hardly believe it! A part of me is starting to feel hope, maybe this is the time he will outgrow this disease? Putting an end to this part of our journey, but at the same time I am always cautious to say how well Ethan is doing, for fear tomorrow we will wake up and everything changes.

I know it is only Tuesday but so far this week is going very well, Ethan has not given me any problems with going to school, knock on wood! Today was picture day at School, I was so happy to have his picture taken without him being on prednisone. I was looking back at pictures of Ethan from just a few months ago and I can't believe how much his face has changed. Prednisone really does change so much about a person. I heard a really great song by Matt Maher called, " Alive Again". One line in the song really spoke to me, it's about breathing in and breathing out, feeling Alive again. Which is how I am starting to feel....

http://www.youtube.com/watch?v=r6w5szlpedY