Cody Today

I know it's been a long time. Everyone out there working full time with 3 boys who all do sports understand how time gets away :) I know getting the diagnosis is scary and since everyone progresses differently you hope for the best but feel uncertain of what the future brings. Cody is doing VERY well. With IgA Nephropathy you have to monitor the protein in your child's urine closely when they get sick, especially upper respiratory illnesses. Cody has gone through strep (which is how we found this disease to begin with, a lot of people find it after getting strep throat), flu, head cold, etc and his protein did go up during strep so I called his nurse who said we just have to wait til strep is gone and if his protein is still up more than 3 days after, we would need to start the prednisone/low sodium/cholesterol medicine again. However, Cody's went down after only 2 days back to normal and through all the other illnesses, he was fine. Now we check his urine once a week and he's only taking fish oil and lisinopril. October he goes back for his first 1 year check up and they'll run all the test again to check kidney function, etc. We feel hopeful since after the biopsy we found no damage or scar tissue were on his kidneys and since his protein has stayed down, we feel hopeful that his function will be 100%. I know many other stories where the kids are on a roller coaster with this disease but I wanted to put this out there to give other parents and kids hope that it doesn' t always turn out that way. Last October because he recovered from Nephrotic Syndrome successfully with no damage to kidneys, we were told by his nephrologist that there is a huge chance he won't ever need a transplant or even dialysis if he continues to do well and responds to the prednisone. We feel very blessed and just wanted to share a good result for others to hang on to .

Low Sodium School Lunch Ideas

Here are my first 5 school lunch ideas for under 400mg sodium (check the labels please and make sure of your brands sodium count). Not all are healthy per say but definitely kid friendly. People with kidney disease are on all different types of restriction so please make sure this fits with your doctor's orders.

Grilled REAL cheddar cheese sandwich (not processed stuff but 1oz slices REAL cheddar) grilled in unsalted butter, grapes, chocolate soy milk

1/2 large bagel with low fat cream cheese and 1 slice chopped cooked bacon (turkey or low sodium), orange slices, chocolate soy milk

English muffin pizza (made with no salt tomato sauce & pizza seasoning) topped with 1oz shredded mozzarella cheese, served with spinach and green leaf salad including chopped hard boiled egg, and water (my kids won't eat cooked spinach but they love the spinach leaves). My son loves an olive oil/vinegar blend dressing (we send it in a small container on the side so he can pour on at lunch time)

Black bean & brown rice burrito (cook up a batch of dry black beans, save some for other dishes.) Cody likes black beans, add the brown rice and cumin, garlic powder and 2 Tbsp salsa - heat on stove. We add a little water to "hold" the ingredients together. Serve with carrot sticks and homemade hummus

PB & J sandwich, applesauce, 2 chocolate chip cookies (check the labels and make sure you get the smaller, lower sodium ones)


When school starts, I will be sure to post pictures of what I send with him that week along with measurements. Send lots of fresh fruits and veggies as fillers - this prednisone makes him HUNGRY!!!!

Have a good day everyone! :)

What Cody ate Today

Breakfast: Banana/Flax/Walnut/Peanut Butter Oatmeal
Well - just visit this link for the recipe and you'll
get the idea! I just found the site KERF (Kath Eats
Real Food) recently and love it! Will be going back
for more whole food type recipes.

http://www.katheats.com/?page_id=2032

Total sodium = about 100mg

Cody's thoughts - he loved it but wanted a little more brown sugar (most of what you see in the pic is ground flax seed - he only started with a Tbsp of brown sugar and we went up to 2 Tbsps)





Lunch: One of Cody's faves - we just did it one day and it stuck. We call it No Sodium Spaghetti - that's just how he differentiates between that and regular. It's basically noodles (which he chops up with scissors for some reason which is why it looks like rice kinda) with olive oil, italian seasoning, garlic powder, and red pepper flakes. With it he had a spinach salad and 2 tsp light ranch dressing.

Total Sodium = about 131 calories for the 2 tsp of light ranch
He loves this dish because on Prednisone the appetite seems to increase ( a lot!!!) and he can eat as much of this as he wants (without dressing). We keeped cooked noodles in the fridge for him to warm up in the microwave.





Dinner: Pork Chop (4oz center cut = 290mg sodium)
Homemade mashed potatoes with unsalted butter
and pepper (0mg sodium)
Extra Fine Frozen Green Beans (3mg sodium)

We used Mrs. Dash original seasoning blend on the
pork chops and Cody loved it!

Total Sodium = about 293mg sodium.

For snacks today Cody ate an apple and 1oz of real cheddar cheese (179mg sodium)



Today's total sodium = 524mg.

Yes he is allowed to eat 1200mg per day but we are just trying to eat healthier, whole foods. Today's low day may mean he gets to eat something higher tomorrow (normally it's mexican or italian for him).



Right now I am working on school friendly lunches to pack so he doesn't feel so different from the other kids but last year when I was packing lunches for my boys and we were focusing on healthier - not low sodium - he never wanted to trade because his friends wanted some of HIS lunch

Thanks for coming!!

Stacy & Cody

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Low Sodium Diet

Sorry it's been so long since our last post. Later tonight we will be posting what Cody ate today for an example of a low sodium diet that is under 1200mg sodium. We will be including pictures and Cody's thoughts on the dishes.

Thanks for everyone's support and to those who keep coming back for updates.

Stacy

Morning Routine

Every morning here is what happens:

*Cody wakes up, pees in his urinal, we use Albustix to check for protein

*He checks his weight

*We take his blood pressure

*Record all of the information in his notebook for our next doctor's appointment.

If your child only has IgAN, he/she will not be doing these things most likely. If they have IgAN with Nephrotic Syndrome, problems with retaining fluid, high protein spillage, or high blood pressure then they most likely will be doing some of this.

For new parents out there, this is not a long term thing. Cody will be doing this until 1)his protein is trace or negative for at least 3 days in a row or 2)he is off the prednisone.

We were only checking his protein levels until he started swelling in the abdomen, back, and in the genital area (which he had never done before) and we were told that the prednisone can cause you to retain salt and fluid (enter 1200mg low sodium diet here along with 4 cups of fluid per day - unless he's doing sports and sweats a lot then the nurse told us to go ahead and give him more) and losing high amounts of protein in urine causes oedema. Once that happened, the nephrologist told us to monitor weight and blood pressure also.

About My Biopsy

When I got in the room they laid me on the bed. They put a clip on my finger that told them how fast my heart was beating. They put cartoons on so that I felt relaxed. Then they turned me on my stomach they squirted a gell on me and rubbed it on my back. It tickled me!!!!!! Then they put a medicine in my IV so that I would go to sleep and not feel anything. It didn't hurt it felt like cold water going up my arm. My mom and dad were with me the whole time. I fell asleep. I didn't feel anything. When they were done they put a bandage on my back. When I woke up my mom and dad were right by me holding my hand. Then I had to lay flat for six hours in my room. On my first picture that was when I got in the room and they laid me down. In the second picture later that night the person that did my biopsy came to check on me and see how I was doing.

Taking My Medicine

When I took my first pill I was a little scared. The second time it was easier. The Fish Oil I poke a hole in it and squirt it in my drink. I think that is easier. I only have to take them in the morning. I am used to it now. The first time I took my medicine my doctor said to put it on the back of my tongue. I think it is cool to take pills that help my kidneys!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Tomorrow I will tell you about my biopsy.

Cody