Be the advocate

To say I'm frustrated is an understatement. A week ago, I spent over three hours on the phone with Scheck and Siress, Shriners and insurance. We've had one appointment at Shriner's and several at Scheck and Siress, this means that I've driven to Chicago and back at least four times for appointments. I'm lucky that I've been able to work these appointments around my work schedule and that I have days off during the week.

According to many parents in our support group at Camp No Limits, Scheck and Siress should have kicked the prosthetic bill back to Shriners. That didn't happen. Parents told me to talk to them both. When I got home from CNL that's when the calling began. Endless messages, calls, return calls, follow ups, more calls, more time, what felt like a lot of wasted time going around in a circle. My head was spinning and I felt defeated.

When we went to Shriners, we were not told that we would be referred out to someone else (in our case Scheck and Siress) to complete the prosthetic. As far as Shriners was concerned, they were done with us until we followed up after her final fitting. As far as Scheck and Siress goes, they made a product and wanted to be paid. I felt deceived. If we would have gone to her pediatrician here, she could have done the same thing the physician at Shriners did... wrote a prescription for a prosthetic due to her missing her left hand, a congenital anomaly. Instead, we drove 6 hours round trip for them to do it and then send us somewhere else. We could have brought the prescription back home to a prosthetic company that was closer. Instead, Shriners told us to follow the Scheck and Siress rep that was IN our appointment.

Please understand, I'm not bashing either. I'm simply telling you our story and our situation so that other parents in our situation can understand. I hope that this helps others to not be in the situation that we've been in recently. I hope that it can help one family to understand the process a bit better. It's not an easy one. I hope that I can help just one person have a process that's a bit easier than ours.

We are happy with the prosthetic that was created for Bella and it is serving our purpose. Our prosthetist at Scheck and Siress really worked to create a prosthetic that would work for Bella. He was nice and easy to work with. He listened to our thoughts and concerns and hers as well.

We are happy with the physician at Shriners. He didn't do anything "wrong". He simply gave us a prescription and wrote his notes in a way that allowed insurance to see the value of a prosthetic for Bella. This helped us and her to receive her prosthetic.

In the end, this has left us with about $850 out of pocket to Scheck and Siress.

Where does the round robin come in? It comes in because Shriners SHOULD have covered the cost IF they have POPS in their hospital (POPS is the prosthetic, orthotic, place there). Shriners in Chicago recently had POPS fully up and running... one month after our initial appointment. Why didn't they tell us this when we scheduled? "Hey if you wait a month, we can make her prosthetic right here in house and you'll save a ton of money"... it's too bad that conversation never occurred.

What are we finding out? We are finding out that FUTURE prosthetics will be covered IF they are made AT SHRINER'S. We are also finding out that not all Shriner's run the same. They are all different and they don't seem to streamline the process from one location to another.

I spent another hour on the phone just this week, advocating for us and for Bella. They are taking our situation up to the head of the hospital at Shriner's Chicago to see if there's anything they can do to help us financially with the cost of her prosthetic. Each day we live and we learn. In the past few months, I've learned that I will advocate for Bella's needs to the ends of the earth. I will continue to fight for her needs, even if that means exhaustion on my end. Today, I'm mentally and emotionally exhausted. My fight for her doesn't end today. I won't back down, I will continue to be there for her and be her voice!

It's not always about us...

Part of this blog is education. Part of it is sharing our story. Part of it is connecting families. I've been beyond thrilled to do all and then some. Today, I'm sharing a story that will educate you, that's part of our story... of someone who is connected to our family. Josh Kennison is a friend, he's one of the warmest, welcoming people that you'll ever meet.

I remember one of my first conversations with him at Florida Camp No Limits. I remember him asking me about being a mother of a child with a limb difference. He asked about my feelings and thoughts and he also asked if I thought about it when I had each of the boys. I openly shared my thoughts and feelings with him, like he had been a friend for years. I knew he wasn't someone that would judge me or make me feel a certain way. That alone is priceless. As a parent, we often feel others are judging us... he did not make me feel this way. He genuinely listened and took in what I was saying.

What did I tell him? I wasn't afraid when I found out Bella had a limb difference, there were many "what if" questions but none of them were fear for me. I told him how Ryan and I researched shoe tying, ponytails, nail painting, crawling... the research was endless, we just wanted to be the best parents we could for our daughter. I remember telling him that I wasn't afraid of having other children with limb differences. I was more afraid of how my heart could have room to love two and then three babies all the same (don't worry it does!).

I remember watching Josh with the kids at camp. I watched him with the siblings. I watched him hug kids or offer his arm for them to hold. I watched Grayson pretend to be Josh because he admired him. I remember Grayson saying "Hi I'm Josh, nice to meet ya" as he was playing in our room. Clearly Josh had made an impact. His cool, kind demeanor touched my sweet three year old.

Today, Josh needs our help. He's having some struggles. He's a strong man, an independent man, a selfless man. Take time to read his story. Donate if you can, pray if you can, send him your positive thoughts, he could use it. Today is about helping Josh make ends meet so that he doesn't have to struggle.

https://www.gofundme.com/staying-caught-up

Flying with kids: How to keep you from losing it!

We travel as far as we can, as often as we can! Sometimes, that means camping nearby and sometimes that means traveling to Maine for Camp No Limits! Here's how we stayed (semi) sane during flying with our three littles.

1. Check the car seats if you can. I refuse to rent car seats, I've seen what my car seats look like and there's no way I want a rental. It's between $9-$20 a day to rent a car seat.  You can find a booster seat for around $20 at any big box store. Besides the ew factor, I KNOW how to install my seats safely. If there's one thing I'm a complete freak about, it's car seat safety. I want to be sure that my kids are safe so the best way to be sure of that is to take a seat that I'm confident that I can install securely and safely every single time.

2. Hand sanitizer, don't forget it!

3. Have each kid carry their own backpack if they can. Our kids are 3, 5 and 7. We made them each responsible for their bag.

4. Now is NOT the time to limit electronic time. Think sanity of you, your kids and fellow passengers. It's called survival!

5. Be sure your electronics will work in flight. Santa bought Kindle Fire's for the kids a few years back... well Santa isn't so smart. He forgot to load movies that can be viewed in flight. DOWNLOAD them to your device so they can be watched. Also be sure those bad boys are fully charged!

6. Snacks, lots of snacks. We packed peanut butter and jelly sandwiches, chips, graham crackers, raisins, nuts and a few other snacks. When you think you have enough snacks for every one, pack a few more.

7. Water bottle. I did not want to be the mom that had her kid spilling the free beverage all over. We brought their empty Klean Kanteens and then we could fill them once passed security. We used our water bottles to help prop their Kindles on their tray table so they didn't have to hold them too.

8. Bring a jacket for each kid. We packed this in their own backpack. It got chilly on one of our flights and we were so thankful to have them. If they don't use them for warmth, they can use them as a pillow (haha, you thought they'd really sleep?!)

9. Gum. Our kids are all able to chew gum (and not swallow it- bonus!) so we gave them gum on the way up and the way down. We had a few complaints about ear pain and gum or drinking water fixed that quick style.

10. Headphones! No one wants to hear Annie for the 10th time, not even me. Headphones got packed in their backpack for each of them. Thank you lord for not having to hear 3 different kid shows for 6 hours!