Monday, June 26, 2017

Prosthetic update!

Wednesday, Bella and I finally get to go to Chicago and pick up her prosthetic! To say we are excited might be an understatement. We'll probably test it a bit there then head back. I'm sure what I'm thinking in my head will be an hour long appointment will take much longer.


This is the "pick up" appointment. Tomorrow is when we pay for it. I'm so thankful for good insurance! We'll only be eating ramen for the next month :) Jokes aside, our out of pocket is 10% which comes out to just over $1,000. Why am I telling you this? Because nothings free. Not only is the time and headache of making all of these appointments then follow up, there's also figuring out where you'll pull the money from. It will also give us the opportunity to budget this in the future, knowing that she'll need a new one about every 18 months-2 years. So far, insurance only approves a "new device" every 3 years. That's a battle I'll start fighting later. I think it's important for parents of children with limb differences to also realize the cost. I thought when you went through Shriner's that things were cheaper. For us, we still have a co-pay at Shriners as well as our location doesn't do prosthetics, they contract that out. So that's how we ended up at Scheck and Siress. Neither here nor there, there's a cost, that if you are like most

We'll plan to pick it up then come home and really put it to use. Really test it out and be sure there are no weird rubbing places and that she has full opportunity to take full advantage of using it so we can follow up, hopefully before we head to Camp No Limits. She'll have one more appointment at least to follow up on fit.

This is pretty much perfect timing with Camp No Limits right around the corner! Camp will give her the opportunity with people that are similar to her to test drive the prosthetic fully. I'm sure there will be a number of people there who can encourage her and help her get used to using it for the tasks that she wanted it for.

So far, we'll all booked for camp, minus a rental car. Camp is quite a distance from the airport so we need a rental car to get from point A to point B. Then we need to pack, packing for 5 is NO easy task... I pack for 4 of us. That's a handful to be sure that you have everything. That's where lists come in handy!

I'll keep you all updated after our appointment on Wednesday!

Thursday, June 22, 2017

I hate cancer!

No seriously, I do. Like really really hate it. Our family has been impacted by cancer more times that I care to talk about. Each road has been long and windy, with the wind in your face and the weight of the world on my shoulders, each time, I stood by the side of my loved ones.

Almost 8 years and my mom fought and WON her battle. I remember the initial diagnosis, I remember the fear, the sadness, the overwhelming emotion, the hurt, the hate, the cuss words, the crying, finding joy felt next to impossible. I questioned if there was a God and if there was, why he did this to her, to us... It wasn't pretty. I remember taking her shopping and her puking in the bathroom. I remember us laughing through the tears. I remember her yelling the F-bomb at the nurse during her bone marrow biopsy. I remember begging them to give her drugs, strong drugs. I remember begging God to save her. It was a long year... but it changed things. It made me realize how much I love my mom and I rely on her... it also made me realize that when the going gets hard, you step up and get that shit done.

A few days ago, our sweet "date night" sitter, was diagnosed with Aplastic Anemia. Why am I sharing this? Because my heart is heavy. She's too young for this, she's too sweet for this. It brought back the flood of emotions that I felt when my own mother was diagnosed. I thought about HER mother and how much panic I would have as a mother now. I reached out to her AND her mother. This isn't fair. All of those questions that came up with my mom, came up for me with her... Why her? Why now? I'm questioning God again, I'm questioning lots of things.

Here's the thing, I met her on Facebook. We talked and I instantly adored her. I felt like she had been a part of our family for an eternity. The kids slept the first couple of times. Once they finally were awake, they raved about her. And she survived them being awake so that's a good sign :) All jokes aside, a post on Facebook created our connection, it brought her into our lives for a reason. I've told the kids that she's sick. They made her videos (all sweet Bella Boo's idea) and I sent them to her. They are coloring pictures and asking to visit her. It's clear she's made a positive impact on her life.

While all this came up, my first thought was THANK GOD I'm a registered bone marrow donor. THIS is the exact reason why, because no one should ever have to go through this. If my bone marrow would save a life, I wouldn't hesitate for a split second. In this case especially, I reached out and said "I'll do it". I have NO hesitations if it comes to that. I adore her.

Hug your loved ones tight tonight, keep your little ones up a little late. We are never ever promised another moment... remember my dad... yeah I would give 10 years of my life to see him one more time. We are never promised anything. What we are promised is that you have that moment in front of you, right now, don't wait. Say your prayers tonight and pray for our sweet sitter, her mama and her two younger sisters. Her journey ahead will not be easy, there will be bumps and bruises along the way. Their road just started. Pray for her, wish on a star, cross your fingers and your toes. She needs it and she's worth it.

Sunday, June 18, 2017

Almost ready...

After stalking Scheck and Siress for weeks, I finally got a pre-approval letter in the mail from our insurance. When I called them on Wednesday, they still hadn't received the letter. Frustrating... so I faxed it over. I'm pretty sure that's what any mama bear when do when her baby bear has kept asking about it!

On Friday, Scheck and Siress called to verify that they also received the letter from insurance. The parts had been ordered and now we wait... We were told that once they were ordered they would be ready in 3-5 business days. What's a mom to do? Yes, call this coming Friday to follow up.

I did reach out to Camp No Limits friends to ask about the type of prosthetic. Being newbies to this whole thing, I wanted to be sure what they were ordering was really something that would be useful to Bella. I sent a text to Mary, CNL founder and director, and Keegan, one of the teen mentors who is one of Bella's buds (and mine too!). They were both able to verify that they thought it would work great for what we had in mind. Being able to quickly reach out to a trusted community is essential. I'm thankful that they both responded quickly! I'm beyond thankful to have them both in our lives.

Again, we wait. At least this time, we know exactly what we are waiting for and how long it SHOULD take... anything could change. I'll keep you all posted!

Friday, June 9, 2017

Prosthetic, smoshthetic

I'm starting to become highly annoyed with this whole process. I don't know how people with little to no medical background deal with this! It's been WEEKS since our appointment at Shriners, okay who am I kidding, it's almost been 2 months. We are STILL in the loop of waiting. I'll cliff notes the version here for the past couple of months:

- Saw Shriner's
- Saw Scheck and Siress
- Waiting on Shriner's to send info to Scheck and Siress
-I called to follow up with Scheck and Siress, paperwork still not sent from Shriner's
-Called Shriner's asking for papers to be sent
-Called back 2 days later, still no paperwork
-Called Shriner's again
-Called Scheck and Siress again who said paperwork has been requested again and asked me to call and ask them AGAIN to send them asap
-Called Shriner's only to find out the Scheck and Siress was emailing the doctor who can't release the records
-Called Scheck and Siress telling them to go through medical records at Shriner's to get the paperwork
-Called Shriner's to talk to medical records
-Shriner's medical records called me to tell me that the records had been sent to Scheck and Siress
-Called Scheck and Siress for an update
-Awaiting insurance to see the paperwork and approve or deny, could take up to 15 business days (that's another 3 weeks folks!)

Is my child going to die from not getting a prosthetic? No. Is she not able to do some things that she would like to do without one? Yes. Is it fair to her that her childhood is different because she was born different? No. Is it fair that some person (probably with 2 hands that has 10 fingers) is making a decision that could change her childhood and life? Yes. Am I annoyed? That's the understatement of the year!

What about our friends who need them to walk? What about our friends who have NO fingers? What about them? Why must this process take so long? Why must we wait in the healthcare loop? As a parent, this is beyond frustrating. As a nurse, this is insane to me. For now, I'll curtail my anger and frustration by working out.

As a mother, I'm left to explain this to my child. Not fair at all.

Wednesday, June 7, 2017

Hurt feelings

I'm thankful that both of my "big" kids have teachers that have really open, honest communication. I was visiting school last week and Bella's teacher shared with me some insight. Bella got moved next to her best bud and then she made a comment that was hurtful. He had painted nails because he wanted to be like a famous pitcher. Bella didn't understand and said that it was "weird". Her teacher had a great conversation with her about words hurting and how she should understand how that feels.

Bella instantly felt sad. She didn't want to make her friend sad, that was not her intent. Instead of asking for clarification, she made the comment. She didn't intend to make him sad or have hurt feelings. After talking with her teacher, she understood and apologized.


This open communication with her teacher allowed me to be in on the story as well. That night we discussed how words hurt and how we need to be thoughtful with our words. We also talked about how sometimes things just come out and then we realize how they make people feel. That's the point when we need to apologize. Even if our intention is not to hurt, we must apologize because the person perceived the situation different than you did.


I can't control what comes out of my child's mouth. I can have a conversation with her about how certain words make us feel. She's truly learning how to express herself this year without blurting and she's really thinking after she says things... She's 7, sometimes she doesn't think before she says things... I mean heck, I'm 37 and sometimes I say things that I don't intend to be hurtful but they come out wrong or are perceived different than my intention.


She didn't understand why a boy would paint their nails. Heck, she doesn't even like her nails painted! We are a bit old fashioned with it comes to our kids and their attire or "look"... examples, No midriff tops or super short shorts. Which the short short thing is hard, because that's the style! Thank goodness for Goodwill! Our boys have short hair and we don't paint their nails. We don't care what other people do, it's just not something that we'll do. What's right for you, might not be right for us. I embrace and encourage differences. YOU have to find what works for YOUR family and we do the same.


Bella has also had some peers do very hurtful things or say very hurtful things this year. We have been trying to get a handle on it all. It's been a really trying year for her and for us as her parents. She's learning that she can't "fix" everyone and help them be nicer. She's learning about people needing space when they are angry, sad, hurt...  We are also working to remind her to leave the bad and embrace the good.

I'm ready for summer. Not only for warm weather but also for a break. For a break from the routine of "real" school. For a break from the peers at school. For the opportunity to reconnect her with friends that weren't in her class this year. For the opportunity to have her all summer!

Friday, June 2, 2017

Moving

Yesterday Bella came home from school with news that one of her "best friends" was moving. This is a child that she's been friends with since kindergarten and he happens to be someone that is an incredible role model for all those around him. Bella's been lucky to have him on her side from the start of her formal education journey.
(Selfies from my phone!)

What's a mom to do? Well I promptly texted his mom to ask about it. Their details are their business but I will share that their are talks of them moving. My heart broke for Bella and for me. I like this family!

Bella said "I know you sent his mom a text, what did she say?" I simply said "they are talking about it but nothing is final yet so we'll have to wait and see"

Her words shocked me. Sometimes she's totally my child (hello eye rolling!) and sometimes, like this, I wonder where she came from.

"Mom, if Bill (name changed for privacy) moves, then I'll be sad. He's one of my best friends. But you know what? It would be a good opportunity for him to continue to grow and learn. I know he'll make lots of new friends. I know that we'll still talk and be friends too. It's a good opportunity for him, you know?"

I sat there in awe of my girl. So much wisdom in such a little lady. First off, where did she know and learn how to use the word "opportunity" appropriately? I sometimes have denial that she's growing up! I know she has wisdom well beyond her years. I also admire her for the ability to let her heart break a little and see the golden lining for her dear friend. I'm not sure I could be as strong as her if I tried.

My best friend lives in Kansas City, I'm an adult and can travel to see her and I still hate it every single day. No, like really, I hate it. We've maintained our friendship over many miles for many years. We got married within months of each other, we had babies close together, we are both working mamas with little to no time. You know what... when something is important to you, you make it happen. My friendship is important and it helps to maintain what little sanity I have left.

I know that Bella will keep Bill close to her heart whether or not he goes to her school. She admires his kindness, his ability to stick up for others, his dedication to sports and his ability to include everyone. I also know that as her mom, I'll work for her to maintain this friendship. My eyes fill with tears as I type this. Somehow, I'm part of raising this girl. Somehow, we've done something right. Somehow, she'll find the courage and the strength to support and encourage her friend even if it means some sadness for her. Somehow, I'll muster up the strength to help her through it.

Prosthetic update!

Wednesday, Bella and I finally get to go to Chicago and pick up her prosthetic! To say we are excited might be an understatement. We'll ...