Prosthetic #2

Today we started the journey of a second prosthetic. In a new place, with new faces, a new prosthetist  and new insurance. This will bring new adventures and new challenges. It will bring a fresh set of eyes and an expert like no one else. The guy we saw this morning is dubbed the best for kids in the Milwaukee area, how lucky are we?! I know people who've used him and loved him so that brings another level of comfort and excitement.

We knew when Bella got her first one that they generally average about 12-18 months of use before a new one is needed. Kids grow and they grow quickly. Her current prosthetic is causing numbness in her nubbin, what would've been her thumb. She had tears in Idaho at Camp No Limits because it "doesn't feel good". Imagine me saying "put your size 7 shoes on" when you really wear a size 9. Your feet would hurt! That's how she feels wearing her current prosthetic. For her, it was literally at the 12 month mark that she started having discomfort which led to pain.

I mentioned challenges, yes challenges. With a new device there will be challenges. It will feel different, it will fit different, there will be a learning curve. Just like driving, when you get in a car that you aren't used to, you have to take a moment to get your bearings and figure it out. That'll be Bella, and us and her prosthetist. All working together to make the magic happen for Boo Bear.

Insurance challenges are sure to come. I'll spare you our deductible which hasn't yet been met but it's high. Then we are responsible for 20% of her prosthetic, though I'm sure there will be a denial or two first... because usually it's someone with two perfectly functioning hands making the decision *insert eye roll* We'll face that challenge when we get there. This girl has a NURSE mama, I know medical terminology and I know how to advocate like a mother... a dangerous combo for the person making those insurance decisions. Until then, we won't worry.

Today, we went to the Hanger Clinic that is inside of our Children's Hospital. (I'll save the why we switched for another blog.) We arrived about 25 minutes early and started reading a book for school. Hey no time like waiting to log those reading minutes!

We met our new prosthetist. From the minute we met, I knew he was our guy. He greeted Bella right away and started talking to her. Then I introduced myself. We went back into the room where he asked BELLA some more questions. Why were we there? What did she want him to do? What were the issues with her current prosthetic? What would she like in a new prosthetic? What bothered her with her current prosthetic? What did she use it for? What would she like to do? We talked about a new terminal device. Here's her current terminal device for reference. That's the piece that's too small.

 

This picture shows where you attach the different pieces, like the mushroom for gymnastics or the bike attachment (she also uses that for hockey and a couple of other things in PE)

We also talked about a myoelectric. That works by electrodes inside the arm that respond to her muscle movements. We talked about what she would be able to do with a myo that she doesn't currently do... pick up things with BOTH hands, she could use it on her bike, hold a barbie doll in her left hand, hold a cup in one hand and a plate in the other, sweep and use a dust pan :) Ha I added that one! The thing about a myoelectric is the cost, they are pricey! Google tells me they are $20,000-$100,000. As a parent, it's frustrating that insurance won't pick up more of the cost... I won't get on my soap box about insurance... right now! Anyhow, there are lots of possibilities with the myo that she won't otherwise be able to have. These are the things that those of us with two hands take for granted every.single.day.

The attachments for the prosthetic she has are still in great condition. She told him what she uses the attachments for and why she likes them. She also talked about what she would like to do. Monkey bars are a big one. We'll for sure add the jump rope attachment once she gets a new terminal device.

He wasted no time taking measurements and then casting her for a new device. He said that Hanger will contact our insurance company and then we will go from there. We'll have to wait to see what the coverage and allowances are so that we can make some decisions from there. She told him her current arm makes her super sweaty and she doesn't like that. He has some ideas that may be a better fit for her. I truly felt like he was an expert in this and would think outside of the box, if necessary, to help her get what works for her. 

(This was the only picture she let me take of the whole process!)

35 minutes in and out, which was awesome! We didn't feel rushed. I felt like he really listened to what Bella wanted and what would meet her needs. Bella said "Mom, he's SOOOO nice!" Ultimately, I know that he's the right guy for the job. I know that we will work collaborate to best meet the needs of Bella. I'll keep you all in the loop as we continue on this part of our lives. 

In the meantime, back to school for this gal!

Stand up for yourself

A couple of weeks ago we had a bus incident. I debated sharing or not but here I am typing so I've decided to share. I'm sharing Bella's side of the story because that's what I know. I also know that we've had a history with this child so that plays into my mind as well.

Bella got off the bus in hysterics. Her face was beat red and her eyes were bright red. The driver motioned for me to come closer so I did. 

"She got smacked by a kid at school while we were still at school and the principal came out. The child isn't on the bus but she's clearly upset. Has the school called you?"

"No the school hasn't called" I said as I tightly wrapped my arms around my daughter. 

"Do you know who it was?"

Bella interrupted and said "Benny T (name changed to protect privacy) did it"

"Thanks for letting me know" I said to the driver. 

"What happened Boo?" I said as I was walking back to the house. 

"Can we talk in private?"

So we got home and we went right into the bedroom to chat. She explained that the child did something sexually inappropriate on the bus in the morning and her and another child reported the behavior to the teachers. When she got on the bus that afternoon the child was angry and said he "knew that she told". Whether he actually knew or not, who knows and it doesn't matter. He proceeded to "tap" her on the face then open handed smack her. The principal was called and apparently according to the kids on the bus it was a disaster to get the kid off the bus. His parents were notified. I called the school IMMEDIATELY. The VP was meeting with the other parents so I had to leave a message. To say I was fuming was an understatement. 

While waiting I talked to my kids about self-defense and what we view as "good self-defense" in our house... while it may not be okay with everyone else, here is what I believe. If someone puts their hands on my child inappropriately, my child has every right to punch, kick, pinch, bite, hit to keep themselves safe. While you might not all agree with that, that's my thought... We can agree to disagree. I'm all about you doing you and I'll do me. For me, keeping my kids safe is a high priority and this is one way I encourage them to protect themselves.

The VP called back shortly after. Our school has a "We can't discuss the consequences for other kids policy"... which I think is complete crap. It involved MY child and I feel like I have the right to know what the consequence is. I may think it's fair or not but I do think that I have the right to know, just like if my child did something, the other parent has the right to know the consequence. Yes, I understand FERPA and no I'm not asking for NAMES from the school. I've even asked "What happens if MY child did that, what would the consequence be?" and was told they'd discuss that if it happened... well out of my control so I opted to do what I could control... which isn't much.

Here's what I asked for: I asked for my child to be moved on the bus so that she was no longer sitting across from this child any longer. That was granted the next time they were both on the bus. It was a stretch but I also asked for them not to be in the same class for next year, as we've had multiple incidents with this child this year... we'll see if that's granted. I don't think that my requests were out of line.

What do you do to teach your kids to stand up for themselves? Are there books you've read with them? How do you teach them to avoid kids that are constantly causing problems? A big issue at our house is that Bella thinks she can "help others learn to be nice"... we've talked about this but she still wants to try. I value that she's a strong, stubborn kid and wants the world to be a better place. I want to protect and cherish that her heart is not hard to the world. But there's a part of me that wants to help her realize that we can't change others... I'd love to hear your suggestions or words or wisdom! This parenting thing is no joke!