Christmas Wish

This article brought tears to my eyes, as I remember the tough times with Ethan and for those children who are still suffering. Just this week Ethan told me that his P.E. teacher told him he was the best in his class for physical fitness. The fact that he wants to, and is able to get out and play and be active again is such a miracle. I can relate to this story in so many ways, including the comments from complete strangers about how "fat" my son is. I wish there was a cure or another treatment that did not affect these children so much physically and emotionally. The side effects are horrendous and even though the doctors call prednisone a " Miracle Drug", those that have been on it, tend to disagree!

Seeking a miracle: 5 year old shares her Christmas wish with Saint Nick - Shawnee, OK - The Shawnee News-Star

18 Months

Saturday November 20th, marked 18 months since Ethan's last dose of prednisone. When I think of where we were and to how our life has changed, I am filled with gratitude and joy. I can hardly believe that we have made it this long. It is truly a miracle to see Ethan happy and healthy. He continues to amaze us with his new found happiness, humour and zest for life. He is trying new things that he would never have attempted when he was sick. For example, he is running 5-7 laps every tuesday and thursday in hopes of getting a gold medal at the end of the year for Kilometer Club. Adam received a gold medal last year and Ethan has made that his goal for this year. 

Recovering

Sorry I haven't posted for awhile. I am recovering from surgery and I haven't really had much to update. Ethan is doing better at School, praise the Lord. He continues to fluctuate from trace to negative, more traces than I would like. But very happy he has now made it 17 months. Here is a link to a video I found that I just had to share. I hope you enjoy it. I am so thankful for my family, friends and husband who have all pitched in to help take care of this past while. Love you all!

http://www.youtube.com/watch?v=NtTa81LyuQM

Prayer Request

Please pray for Ethan, the familiar anxiety and stomach aches have returned! Today Ethan was only at School half an hour before I received a call to come and get him. He was not sick, but had literally made himself feel that way with worry. I know what this feels like and I am so sad that my son is going through this. He is so fearful of getting sick and relapsing. Today it was brought on by the fact that the boy sitting next to him had the flu yesterday. That was all Ethan needed to hear, he just wanted out of there!!!! I didn't realize the extent of his fears as he often doesn't talk about his Kidney disease. Please pray for wisdom for us as we figure out how to best handle this. As well as for Ethan as he goes about life, may he not be filled with fear but with Peace.

Mommy Tasking

I found this article by Carol Barnier, called "Mommy Tasking"

A talk-show guest confidently claimed to have the solution to my problems. "Mothers just need to borrow from the business world. They need to organize, economize and develop simultaneous activity channels. In short, they need to strengthen their multitasking skills."

Was he kidding?

At that moment, I was wiping smeared jelly from a kitchen stool with one hand and zipping the back of my daughter's dress with the other, while reviewing spelling words with a fifth-grader who possessed an infinite number of alternative spellings for hygiene.

Multitasking is not something mothers need to learn. We clean the house and whip up dinner and taxi the kids and trim their hair while we extract a splinter, explain a metaphor, sew a costume, teach kids to chew with mouths closed, remove lipstick from the couch cushion and use a toilet plunger.
No, Mr. Television Guest, you missed the mark completely.

What we moms need, what our minds miss most and what our hearts intensely seek is the seemingly lost ability to monotask. We long for a quiet moment on a porch swing to laugh with a child, a chance to linger over dinner with our husband and the satisfaction of allowing a burgeoning idea to playfully work its way through our brain. Ah ... to feel the linear path.

But just as soon as my thoughts "burgeon," the phone rings or the UPS man pulls up or an 8-year-old runs breathlessly into my sanctuary (read that: bathroom, bedroom, little closet in the basement where I try to hide) and demands to know if the 5-year-old is really allowed to use her toothbrush to clean the hermit crabs.

The world of motherhood is one of perpetual motion. Calendars with no blanks days. "To do" lists that do not end. Spring cleaning that runs deep into August. But multitasking isn't just a solution for improved productivity; it's a value statement that says more is always better and quiet times are unproductive times. I suspect that God couldn't agree less.

The Bible does not say, "He leadeth me in the path of astounding productivity and dizzying accomplishment whereby He is exceedingly impressed." No, God wants us to lie down in green pastures, and He wants to lead us beside still waters to restore our souls.

I know raising children is a season, and a short-lived season at that. One day my kids will be grown. The quiet will be mine to fill and enjoy. I will probably miss the noise and disorder that many little feet used to bring to my world. But when that happens, I intend to read my favorite magazine, from cover to cover, all in one sitting.

Back To School

The boys started School last week, and I have to admit that I do miss them, even their noise! We had a great summer together and I wasn't quite ready for it to end. Adam has started Middle School, Gr.6, and is loving it. I can already see him maturing and trying out his wings. Ethan started the Fourth grade and is again having a rough time of School. This year Ethan is not with any of his close friends, and he is feeling very lonely. On a positive note, I think Ethan has a very kind and compassionate teacher, she seems like a perfect fit for him. So for now, we will continue to pray for both of our boys, that this year would be a great year and one of continued health for Ethan. 

15 months and Counting!

Yahoo!!!! Ethan has now made it 15 months without any of his medications. I am beyond excited for this milestone as he has finally exceeded his old record of 14 months. Ethan continues to fluctuate between trace, negative and sometimes slightly more. But for the most part, he is doing very well, healthy and happy. He is NOT, however, looking forward to starting the fourth grade next week. Adam on the other hand is very excited to be entering Middle School. Wow, I can't believe I am going to have a 6th grader. I remember those years very well, and I am so thankful I don't have to repeat them!

California

We arrived home a few days ago from a wonderful fun filled vacation in California. We took the boys to Disneyland, Universal Studios, Sea World and the San Diego Zoo. We packed in as much as we could, knowing that it would be a long time before we go back again. We drove for 24 hours straight to get there and took 2 days on the way home. The drive home was actually harder than doing it for 24 hours straight. The boys did very well with the driving. Ethan normally gets carsick, as do I, but we both did very well. I came prepared with our sea bands and some homeopathic motion sickness remedies that worked very well. 

A few days before we were to leave, Ethan started having some mild protein. Which was concerning because we didn't want him to relapse while we were away. This would be the first vacation ever, that he would be off all his medications, and we were so looking forward to it. Thankfully, his protein stayed between a trace and 0.3 so he didn't have too many problems, other than some stomach aches. Of course, he did not enjoy all the walking we did. We were thanking God that he was healthy enough to enjoy our trip, knowing that there would be no way we could have done this trip if he was relapsing or on prednisone. 

We were surprised to find out that Ethan does not like roller coasters, we thought for sure he would. Adam took a day to warm up to them and then he was very willing to try new rides. Poor Jeff, he ended up going on the big ones by himself and Adam joined him on a few too. The first day we arrived back home, Ethan went back to negative, go figure! Here is hoping he stays that way.

Testimony

I wanted to share what I spoke about in Church today. Our pastor asked me to share a 3-5 minute talk on our journey with Ethan. For those who couldn't be there, here is what I said:

To go back to the beginning to where it all began, we were cruising along, enjoying our life, completely unaware that a devastating illness with our young 17-month-old son would soon rock our world.  I will never forget hearing the doctor’s words, “your son is very sick, his Kidney’s are failing, he must be admitted to the hospital right away”. Only a few short hours later we would learn that Ethan was diagnosed with a rare Kidney Disease, called Nephrotic Syndrome.

We were shocked and devastated to learn that there is no cure for Nephrotic Syndrome. The only treatment option was to put Ethan on high doses of prednisone. As if that wasn’t enough, we were also told that for some reason Nephrotic Syndrome is triggered by viral illnesses. A simple cold/flu or fever would cause protein to leak into his urine. Which was the start of a relapse and many long months on prednisone.  

Dealing with the many side effects of prednisone and how it changed Ethan’s behaviour and personality was at times more than I felt I could bear. It was during these times, I cried out to God, wondering, just where he was in all of this? Did he care at all that we felt like we were one step away from going under. 

I can tell you that God did not let us go under, and that he DOES care. He has answered our prayers, and yours, in ways that we would never have expected. One example would be, getting Ethan into see his Nephrologist right away, when we were told that there were no openings for months.  Knowing that this was urgent and we couldn’t wait for months. I posted a FB status, emailing and phoning everyone I knew, asking them to pray that an appt would open up for Ethan to see his Nephrologist as soon as possible. 

We received a phone call half an hour later, with the news that they could see Ethan the very next day. The secretary went on to explain her bewilderment at this turn of events, telling me that this kind of thing just doesn’t happen. I told her, “Yes”, it does happen! I have had everyone I know praying, and this is no coincidence, God has answered our prayers. I think I shocked her, because there was complete silence on the other end of the phone. I could tell you many more times like these, where God has given us jewels, gifts from God, as my Mom calls them, to let us know that he has not abandoned us.  At the time, we did not know that the hardest part of our journey was still to come. We would certainly need to be reminded of these jewels and God’s never ending faithfulness in the days ahead.

Two years ago, Ethan’s condition began to deteriorate. His relapses were coming every few weeks as his body stopped responding to the prednisone. Our prayers for healing seemingly went unanswered. We were told that Ethan needed to be put on a stronger immunosuppressive drug, which was a low dose Chemotherapy drug. There was a chance that with this drug, Ethan might go into permanent remission, or if he relapsed again, that his body would respond better to the prednisone. I am so happy to say that the Chemotherapy drug worked, and Ethan has now been off all medications for the past 13 months.

We are so thankful to God for this season of restoration and rest. As you can imagine, living with a chronically ill child, not only affects the child, but the entire family. This past year has been a healing time for our family, as we begin to experience a normal life without doctor’s appts, lab tests, medications and side effects. It has been a wonderful year full of new experiences together.

With that being said, living with Nephrotic Syndrome is very unpredictable; we never know what tomorrow will bring. Even after 13 months, I still worry over when the next relapse will come. I find myself wondering, is this part of our journey over, or is this just a nice break? I must constantly remind myself to give this over to God, that he alone is in control. As a life long worrier, who likes to feel in control, some days are easier than others. Regardless of what the future may hold, we are embracing each day as a gift from God, and we are so grateful for his care and protection over us.

Flu

I don't like being sick, especially on the hottest day of the year so far! But it seems that the stomach flu made an appearance last week first with me, and a few days later, Jeff and the boys. Ethan has been going up to a trace the last few times he has been sick, and this is no exception. Today, I saw foam/bubbles in the toilet, long after he had gone. Which is not a good sign, it means there is protein. So I casually asked him to let me know, the next time he had to go, I would like to test him. I have not been testing him every day, but every few days. Which is a big step for me!!! Not long after, Ethan came to tell me that he went in the cup and tested it himself. "He told me he was a trace, but don't worry Mom, it is because I have been sick." I had to smile, kids are so just matter of fact about these things. So unconcerned about the future, only the here and now. I was able to breath a big sigh of relief, if only for another day we have been blessed with this gift of health!

School's Out!

The boys finished School yesterday. I can hardly believe Adam has finished Gr. 5 and Ethan Gr.3. I am so thankful for a year of good health for Ethan. It made going to School so much easier, although Ethan still does not like School. His first words to me when I picked him up on his last day of School " And my year of torture is over". He simply could not wait to get in the car and drive away from the School.

Last week Ethan started showing a trace of protein in his urine. Which is just slightly above normal, it is not enough for example, to warrant medical intervention. But it still makes my heart skip a beat, as that has been the start of many relapses for Ethan in the past. Thankfully after 5 days, Ethan went back down to negative, and I felt myself again breathing a huge sigh of relief. Even after 13 months, I still have some worry over when the other shoe will drop. I find myself wondering, is this over, or is this just a nice break? Only God knows what the future holds, I must constantly remind myself to give this over to God, that he is in control. Some days are easier than others, and on those hard days I find some good worship music to remind me of what I need to do. I found a song by Francesca Battistelli called "I'm Letting Go" that I really loved. Here is the chorus that I found especially meaningful to my life.

I'm letting go, of the life I planned for me and my dreams
I'm losing control of my destiny
It feels like I am falling and that's what it is like to believe
So I'm letting go
This is a giant leap of faith
Trusting and trying to embrace
The fear of the unknown, beyond my comfort zone
So I am letting go

June

As School nears completion, the boys are getting all of their finished School work sent home. I enjoy reading thru what they have learned throughout the year. I came across Ethan's Bible book, which they use at School to learn about various Bible stories and how it applies to life. One entry was on starting a prayer journal. Ethan's prayer request was dated just before we went to our last Children's appt in April.It was so cute I had to share it with you. " My prayer request would be for my Kidney's to work perfect so I don't need a needle".  Then there was a section where you could write when it was answered, he wrote, "YES".

I asked Ethan about this and he told me that he was very scared he would need a Biopsy, hence the needle.

Yes we are so glad that Ethan continues to be healthy, and we hope to enjoy another summer relaxing and having fun!

Race Day

Yesterday our family completed the 5k race in the Run for Water. Wow, what a difference a year makes and one without any medications for Ethan. Last year Ethan and I walked the 5k and I basically had to drag him along beside me, my Mom even had to piggyback him for some of it. I am so proud of my boys for running the entire race. Ethan and Adam finished in 33 minutes, Ethan improved his time by 25 minutes! Last year he said he never wanted to do the race again and here they are already talking about improving their time for next year! Thank you Lord for these blessings!

One Year!!!

This week we are celebrating the One Year mark! I can hardly believe it has been 12 whole months since I gave Ethan his last dose of Prednisone. July will mark the end of his chemo treatments, but we are still celebrating nonetheless! I mentioned this milestone to Ethan just the other day, his brother asked him if he remembered what he felt like when he was on prednisone. Ethan responded, "Oh Yes"! I had headaches, stomach aches, couldn't sleep". When we both mentioned to Ethan how grumpy he was, he seemed rather surprised!!!

 I am so happy and thankful to see my son happy and healthy, to see his smile and hear his laughter. This year has brought us together as a family, in a way we have been learning and getting to know our son as we haven't before. The longest Ethan has ever been off prednisone was 14 months and that was back when he was 2. So we didn't quite know what to expect, how would he behave off these steroids? How much of his behaviour was caused by the steroids and how much was actually Ethan? We were happy to discover that most of the mood swings and meltdowns were caused by the steroids. Yes, he is still a normal child with his ups and downs, but nowhere near as severe as when he was on prednisone. 

Ethan's eating patterns have also changed, gone are the days of ravenous eating. Finding low salt snacks and foods were a challenge, especially when the steroids made him want to eat anything and everything in sight. We are still trying to follow the low salt diet, it seems to make a difference with his protein. If he has a day of more salt, we do notice that he will go up to a trace of protein for a day or so.

Sleeping has also returned to a more normal pattern and one that makes our life so much easier. I would often lay awake worrying about Ethan not sleeping. He would often cry that he wanted to sleep but just couldn't. Which would then affect his moods and desire for going to School as well. I am happy to report that since January, Ethan has been doing much better in School too. He still doesn't enjoy School, but at least he doesn't complain like he used to. Doing small outings and day trips with the boys have become so fun. Not having to worry about Ethan complaining how bad he feels, makes the trip so much more enjoyable. We asked Ethan what he would like to do to celebrate his one year off prednisone. His response was to go to Hawaii!!!!!! AHHH, a boy after my own heart! Well, we settled on going to Hell's Gate and Othello Tunnels just outside of Hope yesterday. We had a great time together, making memories. We have no idea what the future will hold and if we will have to return to the land of steroids. But for now, we are continuing to celebrate every day, as a gift from God!

Nephrotic Syndrome Seminar

When Ethan was diagnosed with Nephrotic Syndrome, I made it my mission to find as much information as I could on his condition. I came across a U.S. Foundation called "Nephcure". Their mission is to support research, seeking the cause of Nephrotic Syndrome and FSGS. To improve treatment and help find a cure, as well as providing support for families dealing with these conditions. Since they are based out of the U.S. there have been no events or seminars here in Canada. I had always wanted to attend one of their seminars, so I was very excited to learn they were finally coming to Canada. Yesterday, Jeff and I headed out to Vancouver for an afternoon of learning. 

Before the seminar started, they asked us to introduce ourselves and share how old our child was, age of diagnosis, what treatment options we had tried and how our child was doing now. There were only 15 families in attendance that day, but we could relate to every single one them. I had to hold back the tears as the stories they were telling matched so closely my own. Ethan was the youngest of all the children to be diagnosed and he was the 2nd child to currently be in remission. All of the children had been on prednisone, had become steroid dependent and are now on their 2nd and 3rd chemotherapy drugs. I am acutely aware of how much worse Ethan could be doing and how so many families are still suffering, while we are celebrating 11 months of remission. 

The first doctor talked about the role that genetics play in Nephrotic Syndrome. He told us that Nephrotic Syndrome is caused by a defect in the Kidney filters, causing an abnormal immune response. They have also discovered that these children have a defective gene. Out of 30 billion cells, they are beginning to narrow it down to around 900,000, that could possibly cause Nephrotic Syndrome. Some interesting facts for you, 80% of N.S. are due to unknown causes. Other possible causes are infections, allergies, heavy metal exposure and drugs. Our ears perked up at the mention of allergies, as Ethan has many things he reacts to, including foods, pollens, dust, grasses and animals. Jeff asked if Ethan was exposed to these allergens, could it cause him to relapse. The answer was, YES!!! We had already been told that from two other doctors, but it was good to have it confirmed once again. 

We also heard about the treatment options and the need for research. So much has yet to be discovered and this valuable information will help the doctors treat these children and hopefully one day find a cure. 

There is so much more I could say but I will save it for another post! 

 

Children's Checkup

Today Ethan and I headed out to see his Nephrologist at the Children's Hospital. Traffic was very busy, more than it normally is when we go in. I tried to keep the stops and starts as smooth as possible as Ethan gets car sick, he looked very pale and green by the time we arrived! When he was back on prednisone, those trips were even worse. It has been 6 months since we last saw Ethan's Nephrologist. I was very curious to see what they would say at his progress. Of course he was very pleased that Ethan continues to be healthy, with no protein whatsoever for the past 11 months. The good news, is that Ethan received a clean bill of health, with his blood pressure and urine all normal. He is in the 50th percentile for height and weight, which is good, despite all the steroids he has had.

This visit was  relatively short, as we didn't have many issues to discuss. But I did ask the all important question. One he had a hard time answering!  "Is this it? Has Ethan finally outgrown his Nephrotic Syndrome"? His answer surprised me, he told me that Ethan will always have Nephrotic Syndrome. What? I thought he would outgrow this, and now you are telling me he will always have this!  He described it this way, he will always have to watch out for signs, symptoms, even as an adult. The frustrating part of Nephrotic Syndrome is that there is no known cause and no known cure, so even after many years of Ethan being healthy, he could relapse again.

If it would return in a few years or as an adult, he said the chances of it being permanent and needing a Kidney transplant would increase. Now, he said, that is the worst case scenario. Thanks, like I needed to hear all the worst case scenarios.... That is what I get for asking!!! With a big smile on his face, knocking on wood, he told me that he believes Ethan will never relapse again. Hmm, I have heard those words many times before. The last time was right before Ethan had his worst relapse yet.  I have come to realize that despite the doctor's assurances, they truly don't know either what will happen. As much as I would love to know the answer, we are going to continue to take it day by day. Thanking God for every day, week and month that goes by without a relapse. Thank you to everyone who has been praying for Ethan and my family over these past 7 years, you have no idea how much those prayers, love and support have meant to  us. We couldn't have made it thru some very dark and hard times without you all, so thank you very much!

Overnight

We are so thankful that Ethan continues to do well, I can't convey how amazing it is to see my son happy and healthy, enjoying life! We are off to see Ethan's Nephrologist next week, I am very excited to hear what they have to say and for them to see how well Ethan is doing. To think where we were at this time last year. Ethan was the sickest he has ever been, and he was starting a 12 week course of a chemotherapy drug. In the midst of the trials of last year, I often wished things would change overnight.  I came across Amy Grant's new song " Overnight", which sums up exactly how I feel.

" If it all just happened overnight, you wouldn't know how much it means. If it all just happened overnight, you would never learn to believe in what you cannot see."

April

Time is just ticking away, the days and weeks seem to be flying by. Here we are already into April.... Easter has come and gone and we are looking forward to seeing Ethan's Nephrologist at the end of April. It  will be six whole months since we have seen them. I can hardly wait to see what they have to say. I would love for them to be able to tell me that Ethan is in the clear. That he has outgrown this disease. But I know they can't do that. Only time will tell, and so we keep on, keeping on.

It has also been 3 months, since I have embarked on my own health journey. I have completely changed my diet, finally lost some weight, and I am happy to say that I am feeling much better. It has not been an easy road, and there are days, where I feel so sick of eating the same thing, I can barely choke it down. The rewards have been so great, my migraines and daily headaches are getting less and less. There have even been a few days in a row, where I haven't had to take any medication for my headaches. I had all but given up hope of finding any relief, after so many other failed attempts at finding a "cure". It took me a long time to get to this place, where I was ready for change. I would say I was ready for the pain to be gone years ago, but I wasn't ready for the sacrifice that it would require. It is not easy, and I still crave and miss my favourite foods. But I now realize, the temporary taste, is not worth the pain I will suffer later on. Something my Mother has been trying to tell me for years! No one can make you do anything, it must come from yourself and I finally got "it". My "Aha" moment!!! Taking the road less travelled is hard but so worth it!!!!

10 Months

Hard to believe that 10 months have now passed since Ethan was on prednisone. Ethan, Adam and I were talking in the car the other day. The best conversations I find, happen in the car! Such amazing things get discussed while we are driving. Somehow we stumbled onto what life was like when Ethan was on prednisone. Especially when he was younger, I am so thankful that Ethan doesn't seem to remember those early years. Adam on the other hand does! He told Ethan all about how he acted and how it made him feel, I think it was a good experience for both of them.

Then came the tough question, Is Ethan healed? Or can he get this again? I tried my best to explain that we don't know, we hope that Ethan is healed. It appears that the chemo drug has done it's job, giving Ethan much needed time off all the drugs. He has even been sick with colds and still no relapse, which is a good sign. Each month that goes by, gives me more hope that he is indeed healed. But I am still cautious, as we were told that he could still relapse even after a year or longer of being off his medications.

 Neither one liked the thought of having to go through this all again. It was a great opportunity to explain how God has been faithful to us and how our prayers have been answered. Not always the way we wanted but just what we needed. I love my boys, although I was glad they went back to School this week!!!! Adam was super excited to get back and Ethan was NOT. I left him holding back tears as I said goodbye yesterday. I was worried all day about how he was doing, only to find him happy and giving me the thumbs up when I came to pick him up. Although he still calls School torture, he went much more happily today!

If you want me to.

I love music and books, nothing speaks to my heart more than wonderful melodies and words on a page. I came across this song recently and I was touched by it's lyrics. The singer, songwriter, has been blind since she was two years old. Like the song says, I am clinging to that promise. No matter what lies ahead,  Jesus is with me and he isn't finished with me yet!

If you want me to, by Ginny Owens.

The pathway is broken
And the signs are unclear
And I don't know the reason why you brought me here
But just because you love me the way that you do
I'm gonna walk through the valley
If you want me to

Chorus:
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise, you're not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my home
But you never said it would be easy
You only said I'd never go alone

So When the whole world turns against me
And I'm all by myself
And I can't hear you answer my cries for help
I'll remember the suffering
Your love put you through
And I will go through the valley If you want me to

Happy Birthday Ethan!!!

Today we are celebrating Ethan's 9th Birthday. He is having a great day spending time with his cousins who have arrived from out of town for a visit.  Today is not only special because it is Ethan's Birthday, but it also marks the first time in years that Ethan has not had to take any medications on his Birthday!  I remember feeling so sad for him, especially last year as he was taking large amount of prednisone and was about to start a chemotherapy drug. I am so thankful that Ethan continues to do well, it has been such an amazing experience to see him healthy.  Ethan's middle name is, Isaac, which means "Laughter".  He has definitely lived up to that, his mischievous smile and laughter are infectious. Nothing sounds better to me than hearing my boys laughing together. Adam and Ethan's relationship has improved so much since Ethan has been off prednisone too, they are the best of friends. They do argue and fight like normal siblings, but for the most part they get along very well.  I had to laugh at Ethan yesterday as we were driving by his School. He said with a huge smile that the best part of School is coming home!!!! Yes, that is my Ethan!!!!

Spring

Spring is in the air, can you feel it? It has actually felt like Spring for quite awhile already. Winter brought very mild temperatures this year. Spring is almost officially upon us, I never forget the first day of Spring as it always falls on my Birthday. Spring is such a beautiful time of year, the growth and new life springing up from the ground and trees. Spring also brings with it, at least in my house, itchy eyes, sneezing and runny noses. Jeff and our boys seem to get hit hard with allergies every Spring and Summer, with our early Spring, Jeff seems to be reacting already.  

Spring is described as the season of growth, to come to the light, to rise from the Earth, begin to appear. These past few months have brought me closer to my goal of health. I have been working with a Naturopath since December and slowly but surely my headaches are getting better. At times I have been very tempted to give up, as the program I am on, eating wise, has been hard. The upside is that I have finally lost weight, 17 pounds so far! Getting rid of the weight I gained during times of stress with Ethan, feels so good. I could not do this program if Ethan was not healthy, especially the eating part, I am so very thankful that Ethan continues to be well.

Kidney Month

Did you know that March is Kidney awareness month? A recent survey posted on the Kidney Foundation of Canada's website reveals, Canadians don’t fully understand the vital importance of their Kidney's. I have to admit that before Ethan was diagnosed, I rarely thought about my Kidney's and what they do. I have included below, the link for the Kidney survey results. Please make sure you take the time to review the Kidney disease risk factors, such as Diabetes and High Blood Pressure. Kidney disease often progresses rather quietly, as was the case with Ethan. It wasn't until his symptoms were quite severe that we noticed there was a problem. Take Care of those precious Organs and Happy Kidney Month!!!



http://www.kidney.ca/Page.aspx?pid=406

9 Months

Saturday is the official day that marks 9 months of Ethan being off prednisone. I must admit that the more time that goes by without a relapse. The more I am finding myself able to relax, gone are the days where I would test Ethan's urine, sometimes more than once a day. I am finally able to go a few days between testing. Although, I still breathe a sigh of relief every day that I see a yellow stick, instead of green. I don't know if I will ever get to the point that I can fully relax, maybe that will come after a few years. The relapse rate is 90% for Nephrotic Syndrome. So I know that even though Ethan is doing well at this point, he could still relapse. The longest Ethan has made it without a relapse is 14 months. 

One verse that has been coming to mind a lot lately is Lamentations 3:22-23 " Because of the Lord's great love, we are not consumed, for his compassions never fail. They are new every morning, great is your faithfulness." I thought this was a perfect verse for how I am feeling. Even though many times I felt like I was being consumed by Ethan's illness, God was faithful and was always with me. 

Life

Well the dreaded stomach flu, hit our house this weekend. I was the lucky receiver with Adam following a few short hours later. So far Ethan and Jeff have managed to stay healthy. I have not been sick all winter so I guess it was my time to catch something.

Ethan has been doing great, he has improved his grades in School, he received the only perfect score on a Space test last week. He was very happy about that, and his stomach and anxiety issues have been improving as well. Ethan and his class enjoyed a wonderful day of snowshoeing at our local ski mountain on Friday. Ethan said the first hour was all uphill and many kids were complaining, he said he didn't complain though ☺.  I am so thankful that Ethan felt well enough to enjoy this outing with his class, if he was on prednisone, I know it would have been much harder.

 Adam's class is going snowboarding/skiing this Thursday, he is very excited about that too! Adam has been doing very well in Grade 5, he is certainly getting more independent, he loves Social Studies and Science. He also received a perfect score on his Science test, so very proud of my boys!

News Story

I came across a news article about a young boy who also suffers from Nephrotic Syndrome. I am always interested in reading about other children and families who are also dealing with Nephrotic Syndrome. This story brought tears to my eyes, I could relate to this Mother and child, the many ups and downs of N.S.

The feeling that you are never really out of the woods, always waiting for the other shoe to drop.  I came across a quote from Eugene Peterson in the New Testament, "The Message", that describes where I aspire to be and I wanted to share it with you too.  "Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes". As a life long worrier, this has been very hard for me to do. As each day passes and Ethan continues to be well, it gives me great hope and encouragement. At the same time, if Ethan were to turn around and relapse tomorrow, I know that God will still be there to help us through. Even though I would give anything to never go through this again. To find a cure, not only for Ethan, but for all of the other children and families, who are also suffering. I know, and believe in my heart, that God is faithful, and he who has begun a good work in me (you) will carry it on to completion.

http://www.nbcdfw.com/news/health/N-Texas-Boy-Teaches-Mom-Greatest-Lesson-52643972.html

My Health

One can only last so long in a state of survival, before everything starts to fall apart. For many years this is where I have been living. My health was continually getting worse with my headaches/ migraines occurring almost daily. I have suffered with headaches since I was 10 years old. Over the years they have been getting worse, especially when things with Ethan's health were not good.  In December of 2009, I decided once again to try a Naturopath. I felt like I had to do something drastic as everything I had tried hadn't worked or did work, but had severe side effects. The medication I was on for a year, to help prevent the migraines, also made my hair fall out. Not a pleasant thing to have happen at the age of 33. 


I was very nervous to try another Naturopath as I had been unsuccessful in the past adhering to their strict programs. But I was desperate for relief and was willing to do anything to improve my life. During my first meeting, I discovered that the foods that I had been eating were indeed part of the problem. Migraine headaches have many triggers and for years I wasn't exactly sure what mine were. To start, I was to try an anti- inflammatory diet, which consisted of NO dairy, eggs, wheat, tomatoes, corn or citrus foods, beef or pork.  At first I was overwhelmed and wondered, what in the world I was going to eat? My Naturopath said to give it my all for 3 weeks. After which we would see how I was feeling and if I could add things back into my diet. The first 3 days were horrible, cravings, more headaches than I thought possible,  I began to wonder if this was worth it. I am thankful for the support of my Mom who carried me when I felt like giving up. My Naturopath also wanted to try Chinese Acupuncture on me, I am not a fan of needles, especially when she said it would hurt!  The needles she uses are bigger than I have had before, which is why it hurts. She told me the reason for the bigger needles, but I have forgotten now. Anyway, I have found the Acupuncture to be a great relief, walking in with a major headache only to leave with nothing. Through Acupuncture, we have found that food is not the only reason I am getting headaches. Slowly but surely, things are starting to improve. I have gone from having a migraine every other day to once a week. I am still getting daily headaches, although they are not as intense as they once were. I have also continued on with the diet changes, which as a bonus, has finally helped me shed some unwanted pounds. I feel so much better eating this way, although it is not always easy. When I have had a meal that is not on the plan, I have paid dearly for it, with nausea and headaches. I have finally gotten to the place where it is no longer worth it to eat those things, even though I do miss them!


This year is all about getting healthy, physically and emotionally. I decided to take full advantage of the time that Ethan is off his meds to focus on my health so I can be a better mother, wife, daughter and friend!  

8 Months

Hooray!!! We have reached the 8 month mark of Ethan being off all his medications. We went to the chiropractor today, normally the Dr. has to do many adjustments on Ethan, with his Kidney's being the main focus. Today he told us that he can tell Ethan is doing better, and he only made 3 adjustments to his body!  Even though there is sickness all around Ethan at school, he has managed to escape the coughs, colds and flus. Pushing on towards the one year goal, Can't wait!!!!!