The Road to Home

A beautiful day of hoar-frost here in Saskatchewan. 

The kids and I made a quick but thorough dash through the grocery store this morning. We are mostly ready for Christmas, at least as ready as we will ever be. I'm nowhere near as organized as most years but I'm not going to let it bother me. I have provisions in, one gift yet to buy, and if I get the rugs vacuumed I will call it good. 

We have run into some bumps with our son's health. Nothing I'm ready to blog about, although I've tried. Suffice it to say we are realizing the gravity of Childhood Nephrotic Syndrome. We are hanging in there, though, and learning and growing as a family. My challenge as a mother is to do as well at this important job as I have always tried to do at any job. Luckily our boy is a trooper--uncomplaining and oblivious. 

That brings me to Christmas. A hard time for so many, remembering and missing lost loved ones or, worse, realizing a last Christmas together. It is hard, this year, to become entangled in the nonsense of consumer-driven fads and commercial pressure. We haven't got all the outdoor lights put up and we likely won't get it done. But the colourful strands of bulbs outside the door are wonderful and inspire our awe every night as my boys race to the tub for their evening bath. 

I've done most of my baking and now will only do more to fill our afternoons waiting for the big day. I look forward most to a Christmas Eve spent sleigh riding with family before a potluck feast of appetizers and drinks, then home to hang stockings and read 'Twas The Night Before Christmas. 

I don't know what the new year will bring. I think now only of today, of this moment that we have together. I am appreciating small moments more. This Christmas, I hope that you do too. 

Summer R and R

Summer is flying by, for us, at a breakneck speed. My two boys and I are used to a casual pace--most days spent at home with a small radius of visits and local doings. It has been a busy, almost hectic, summer, and I've decided to put the brakes on before our next round of company arrives.

We had a wonderful time with my friend's three sons at the start of July. They are ten year old twins and an almost eight year old younger brother. They were helpful, listened well, were respectful of our things, and I daresay we bonded in a way that might have taken years if we hadn't had that time together. I look forward to hosting them for a week every summer if I am able. My own two children were entertained and well looked after with my main task being cooking and cleaning! There was barely a fight or disagreement between mine, which is sadly not our normal habit.

We left the day after our company did and traveled an hour and a half south to where Husband has our camper. He travels for work and we bought the camper years ago for that purpose. Although not as kid-friendly as some, our boys love sleeping in the camper and have had a wonderful time with neighboring children and some old friends they already knew. We have spent hot days at the beach building sand castles and catching (and releasing) minnows in nets and buckets. Playgrounds and fresh air have been top of the list, with a quick two-day return home to mow lawn and visit gramma.

photo from http://www.teaandsnippets.com/tag/sand-castles/. I'm
struggling with new methods to upload photos. It's on the to-do list now that we are home.

I hustled the kids back to the camper even though I knew they were exhausted. We did a few more beach days even though I could tell both boys were catching a cold. The voice in my head was saying "you will spend a long dreaded winter cooped up in your house...stay at the lake and make the most of this beautiful weather". And I listened to that voice for a day longer than I should have. The day we arrived home, 4 year old was tired and sick and I was watching him for swelling (having had protein in his urine for some time). In the night he repeatedly complained of pain in his ear and the next morning we were off to the doctor. Ear infection, as expected.

The four year old likes to have a plan made for tomorrow before he goes to sleep. I told him we are going to get our house clean and tidy for when Nanny and Poppy come from Newfoundland next week. We have our yard to care for and water, and a pond to finish. I would desperately like to do some baking but in this heat I think it will have to wait for a cooler time. He said "I just want to spend time with you and Gramma". So that is what we will be doing--resuming our routine at home and enjoying summer from here. As his ears get better we might venture to a local beach, but we are back to our old ways and I must admit it is a relief.

How is summer shaping up in your neck of the woods?

Low-Sodium Diet

Eating a diet that is low in sodium is harder than one might think. We don't keep a salt shaker on the table and I don't add salt to my cooking. I use mostly dried herbs for seasoning, and most of what we eat is homemade--much easier to control salt intake. I read food labels and do my best, almost all the time, to have my kids eat fresh fruit and vegetables rather than packaged, ready-made snacks.

As a new mom, sugar was my biggest concern when feeding my kids. Until my eldest son was diagnosed with childhood nephrotic syndrome, I worried more about sugar and barely glanced at the sodium content on food labels. While I still avoid sugary snacks for my kids, salt has become equally as unwanted for my family. The trouble is, food doesn't have to taste salty to actually be loaded with the unhealthy stuff.

Let me backtrack and explain why we attempt a low(er) sodium diet in our home. Salt leads to fluid retention, a symptom of nephrotic syndrome. When protein leaves my son's body in his urine, his organs and tissue begin to swell with fluid. As it was explained to me by our specialist, salt exacerbates the problem during a relapse of the syndrome. Currently, we are fighting off a relapse and may have to resume prednisone  treatment. Just reading the list of side-effects from this life-saving medication makes me panic inside. Panic inside. But if it turns out that he goes on it again, we resume our calcium and vitamin D supplements, maintain our healthy lifestyle, and be grateful that there is a treatment for this syndrome. And we hope he outgrows it soon. In the meantime, eating as little salt as possible while he has protein in his urine is a no-brainer. But, like I said, it's harder than you think.

The other day, searching for a snack for the boys, I reached for salted peanuts. I checked the label. In one third of a cup (about what I would have given them each) there is 6% of an adults daily sodium. Not bad, I thought, but spied some butter toffee nuts left over from Christmas. 13% of an adult's daily salt intake in the same amount of nuts. And they don't taste salty. Where I am headed with this, you can probably guess, is we have to really check the labels on everything we feed our families. Since that day I have looked for more information on low-sodium diets. I read on one site that for a snack to be considered "low-sodium" it should have fewer than 140 mg salt/serving. Back to the nuts. A third cup of salted nuts has 150 mg of salt, while a third cup of butter toffee nuts has 320 mg of salt. Blow my mind. They had an orange instead.

I am very interested to hear from parents of children with nephrotic syndrome. If you would like to start a conversation, please comment and we can email from there. We are less than a year into this and quite possibly relapsing now. I am grateful that there is a treatment, so grateful, but I would like to hear your experience with prednisone. My thoughts very often turn to those families that might not find such a simple treatment for a sick child, and my heart breaks for them. Go hold your babies close.

Reality Check

Today it has been two weeks since we departed our old house and moved to my parents' farm to await our new home nearby. In that two weeks:

• our road and the pad for the house were built (pictures to come, I'm having trouble getting on the Internet here so only infrequently borrow the desktop)
• road has now been gravelled
• 3 year old became ill and was soon diagnosed with nephrotic syndrome (under control now, with a 6 month treatment ahead of us)
• Husband returned to work
• 13 month old sick and wheezy, on nebulizers, clearing up now but still coughing
• we planted over 400 trees
• we received over 800 more trees yesterday
• cupboards, counter tops, closet shelving, trim and doors have been installed in our wish house

I knew all along that it would be hard work planting all of these trees. Without a well (we are anxiously waiting for the well digger to return and finish. He did a test hole in February but now his equipment is broke down and I need a well!) we are hauling water from the community well down the road and watering what we can with a short, heavy, stiff and awkward hose. We water the rest of the trees by hand and, with two sick kids and my mom already overburdened, we need to set up a better system. Worried about my kids, I came to the conclusion that we need to concentrate on what we can manage this year. The trees that I paid for are in the ground and need watered. We intend to focus on those and plant as many of the shelter belt trees as possible in our garden area. It is so much easier to water a large area of trees rather than carrying 5 gallon pails to the shelter belt. Next year we will prepare the land and plant out those trees when we are better able to water and care for them. I also plan to give away as many of the trees as possible.

If I had more time I would have tried to contact the shelter belt program to pass the trees on to someone who might not have received any. But I was at the doctor five days in a row last week and a 3 hour drive to a specialist this week, and the trees had already been sent. All I can do now is try to give many of them away and ensure that the rest survive to be planted next year.

Our house looks beautiful. My kids are recovering and we finally have appointments to see the specialist to be tested for asthma and allergies. We love the way our new yard is shaping up, and it will be breathtaking when the trees begin to grow along the road as we have planted them. We are fortunate beyond belief. This past two weeks has reminded me to take nothing for granted. As things fall into place for the house to be moved to our yard in July, we are remembering to savour our time together rather than worry about time frames and deadlines. Have you ever heard of nephrotic syndrome? If so, I'd be very interested to hear about your experience!