Friday, March 16, 2018

Meet My Sweet Zebras

Today, Jamie from My Sweet Zebras is guest posting on Sunshine and Spoons! Jamie is an supermom taking care of her two little zebras, and I'm excited to share her family's story with you.

With no further ado, here's Jamie!

Meet My Sweet Zebras

Hi there! I’m Jamie from My Sweet Zebras. Before 2016, I thought Zebras were just black and white striped animals at the zoo. I had no idea that medically speaking being ‘a zebra’ was even a thing. Zebras are similar to one another but unique; each with their own set of stripes. I like to think our story is like that, similar but unique. I have two boys, wild and rambunctious! Seth is 9, he is on the Autism spectrum and he’s a sensory seeker! Sebastian is 6, and he is a lover of life! They keep me on my toes for sure, but I wouldn’t trade it for the world. When Sebastian was 4, he kept having what we thought were growing pains. Initially starting in his legs, the pain spread to his back and neck. After about 6 months of tests, x-rays, warm baths, and doctor visits we landed in the ER. Sebastian woke up unable to get out of bed. He said his legs hurt, his neck hurt and the pain was going down his arms. Our pediatrician wanted a CT Scan of his neck. While not much was done at that visit, this is what got the ball rolling. This was our first look into the world of Ehlers-Danlos Syndrome. From that moment our lives changed forever. In the next 3 months we saw rheumatology, neurology, genetics, cardiology and started Physical and occupational therapy. Genetics found my husband and both sons had a clinical diagnosis of Ehlers Danlos Syndrome, as well as markers for Classical type EDS. Seth has a variant on the gene associated with cEDS and we are awaiting results from the rest of us.

Cardiology cleared them of vascular EDS but when screening Seth, they found a hidden congenital heart defect called AAOCA (Anomalous Origin of the Coronary Artery.) This is the second leading cause in child and adolescent sudden cardiac death. Looking back there were things that make sense now. Sebastian was a really floppy baby, he reached milestones late, and he had a leg length difference that was caused by overly tight muscles around his hip. Seth is extremely hypermobile and he is always looking for deep pressure sensations, cue the sensory seeking! Remember those unique zebra stripes? EDS affects the boys in completely different ways. Seth is very toned, his knees have subluxed but for the most part his joints are stable, he is very flexible and this includes his stretchy skin which scars funny. Sebastian lacks muscle tone, despite being as active as he can be, he has chronic pain in his joints, nerves and muscles, and his skin is velvety soft.
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Who would have thought growing pains would have brought us here, to a diagnosis of Ehlers Danlos Syndrome? Our lives have been crazy since, our calendars are filled with therapies and doctor appointments, our home is filled with medicines, creams and equipment trying to prevent pain. Seth recently had open heart surgery to correct the defect that was found. He is healing great and we are hopeful that the EDS won’t have any impact on his healing and moving forward.

Sebastian is in therapy, and we have been told he will need to be in some sort of physical therapy for the rest of his life. Recently with Seth's surgery, we took a break from therapy and we have seen the impact of stopping. Sebastian works really hard, and some days are better than others. Some days, he has trouble sitting up in bed and other days he is full of smiles instead of pain. A recent visit to his pain management Dr has him scheduled for another MRI, this one to check for Tethered Cord. We aren’t sure where EDS will lead us next, but we’ll go there together. I’m thankful we found out what it was early enough to make a difference in my boys’ lives. Sebastian is able to get the help he needs, and Seth’s heart condition was caught before it caused any damage. I tell Sebastian he saved his brother’s life.

Our lives have changed so much and our normal is way different than normal, but it’s ours. And we will get through it one day at a time. If you’d like to follow our story you can find us on Facebook at My Sweet Zebras.

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Tuesday, January 16, 2018

25+ Products That Make Life with Chronic Illness Easier

This post contains referral/affiliate links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

Having a chronic illness definitely makes life harder.  I'm assuming that, like me, you don't have the resources to hire a full-time nanny, chef, housekeeper, personal assistant, etc. either.  So, until I win the lottery (which will probably be tricky to do as I don't even play the lottery), I will have to go on finding products that work for me to make my life with a chronic illness easier.  

25+ Products That Make Life with Chronic Illness Easier

Here's what I've come up with so far.  Some are things I already use, some are on my wishlist (my birthday's in May if anyone wants to just go ahead and buy me everything on my wishlist! Hey, doesn't hurt to try, right?!?) and some are highly recommended by other spoonies.  Feel free to add your own suggestions in the comment section!

Thursday, January 11, 2018

How to Make DIY Spend Save Share Banks

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

For months, Nano kept telling me that he had a fifty dollar bill in his piggy bank.  Obviously, I didn't believe him because where in the world would a 7-year-old have gotten that kind of money?  I figured that he had mistaken a five dollar bill for a fifty and was a little overly optimistic about his financial state.

How to Make DIY Spend Save Share Banks

After months of hearing him brag about his riches, I was getting tired of it.

"Mom, I have a fifty dollar bill in my bank!  I'm rich!"

That was the final straw on the donkey's back.  I asked him to show it to me to prove that he was wrong.  Nano ran to his room, and I could hear him dumping out his money on the floor.  A minute later, he came running back into the room and handed me a fifty dollar bill.  I was stunned.

"Where did you get this?!?!"

"I found it!  It was laying on the ground outside of the dollar store," he said proudly.

At that moment, I remembered the time last summer that I had let him and Katie walk to the dollar store by themselves just a block from our house to buy something with a few dollars they had saved up.  It was right around that time that Nano started talking about his fifty dollar bill.

I was appalled.  When I was that age, I found a five dollar bill laying on the ground outside of the post office and went around asking everybody I saw if it was theirs before some sweet old lady told me that I should just take it home.  I felt guilty for weeks.

My kid found ten times that much money, and all he could think was finders keepers.

How to Make DIY Spend Save Share Banks

We had a long heart-to-heart talk about the right way to handle that situation would have been and then I mentioned that he needed to bring some of that money to church to put in the offering plate and then put the rest in his savings account.

He was not happy with that suggestion as he had big plans to spend his riches, and I realized that it was time to have another talk about practicing good stewardship with money.

How to Make DIY Spend Save Share Banks

At the time, the kids' piggy banks were mason jars with coin slot lids that I had put together for them a few years ago.  I decided that I wanted to switch them over to the Save-Spend-Share style of banks instead.  I checked Amazon and found some cute ones there, but ultimately decided  to try making my own instead.

After mulling over the best way to make the banks for about a week, I was cleaning out the cupboard above the stove (you know, the one that ends up crammed with random water bottles and ice trays) and pulled out an empty eight ounce parmesan cheese container.  Inspiration stuck, and I had a plan.

How to Make DIY Spend Save Share Banks

I wrapped three empty and clean parmesan cheese containers in fun duct tape and then duct taped all three of them together.  Using a permanent marker, I wrote the category and the percentage on each one of the lids.

For our categories and percentages, I chose:
Savings: 50%
Spend: 40%
Tithe: 10%

When the kids got home from school that day, I showed them their new banks and explained how to divide their money up into each category.  They were pretty excited to try out the new system with the money they already had.

How to Make DIY Spend Save Share Banks

How to make DIY save/spend/share banks:

Just six more empty parmesan containers, and I'll be able to make banks for the two younger kids too!  On a completed unrelated note, if you know of any recipes that call for LOTS of parmesan cheese, send them my way...

Other things that would work great for these banks are...
3 ring pencil pouch
Plastic frozen concentrated juice containers
Pringle containers
Mason jars
Deli food containers
Water bottles
Empty spice containers

Or if you want to buy one instead of making your own, here's a bunch of really neat ones!

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