Friday, April 27, 2018

Limb difference facts

The cost for an upper limb prosthetic varies by vendor and your insurance coverage. According to my research, they can cost 3,000-90,000. Bella's cost about 8,000.

Thursday, April 26, 2018

Glasses update!

This little dude is rocking his glasses! He is wearing them during MOST of his waking hours and has really embraced them fully. I'm a little surprised. He has asked "Mom I need a break, is that okay?" I fully remember getting my glasses for the first time and needing a break from them. The pounding headaches initially because my eyes were not used to seeing so clearly.

We had  a little mishap with his initial order. Initially we ordered from the eye doctor for a hefty price tag of almost $550. Yikes! I didn't know better and ordered them without hesitation. Then they got lost in transit after 14 days so we were told it would be another 10-14 days to get a new pair. I opted to cancel the order and order elsewhere. I picked up his prescription and went to walmart. He picked out a great pair that he loved for his frame, polycarbonate lenses and antireflective for less than $100. They have a one year warranty so that's great too. I'm still working on ordering a cheaper backup pair online, just in case! It's always good to have a second pair because you never know!

We are still working on responsibility and glasses. He takes them off when he's kicking the ball in the backyard with his brother or jumping on the trampoline. While that's great, I found them in the middle of the hallway on the floor NOT in a case yesterday. We had a little chat about the cost of glasses and the importance of being responsible with them. Not only are they costly but if they break due to his irresponsibility, he'll have some consequences. I stressed set them in the case in somewhere that he would remember, his drawer or his backpack. I imagine this will continue to be a work in progress. 

Yesterday while getting ready for school he was reading before school! First off, finding a book that interests him is SO important. He's completely uninterested in first reader type books. We found that if he has a book with facts about animals in it, he's all over it. Yesterday he was reading "Fangs" which is all about animals with fangs. Ugh, not my thing but I will tell you I learned all sorts of interesting facts! I'd like to think the reading is easier too since he can see better and BOTH of his eyes are now doing the work instead of one. 

Sunday, April 22, 2018

Statistics

According to the CDC, each year about 4 out of every 10,000 babies will have upper limb reductions. Do some simple math and that's 1 in 2,500 babies. While it might not seem common to you. It's part of our life every single day and there's a resources out there to help you. Some of our favorites are Born Just Right, Lucky Fin Project and Camp No Limits. If you know of someone with a limb difference, please share with them these resources! Share our blog and pass along a little education to help them feel supported. 

Saturday, April 21, 2018

Birthday Girl

Am I still a girl if I'm pushing 40? I'm going with yes!
I'm determined to make this year my best year yet. Not that I've had bad years in the past... it's just that I haven't made me a priority since giving birth to those three little loves you see in this picture. I'm determined to figure out a way to continue to find balance and peace within myself. I'm getting control of my diet. What goes in must come out... it comes out for me in the form of emotions, sluggishness, crabby attitude, exhaustion, tears... If I fuel my body with good food, it comes out in a more desirable way. So that's what I'm doing. 

I've been working out and I love feeling strong. I'm continuing to work out, lift heavier weights, really push my cardio. Yes there's the benefit of looking good, but there's the bigger benefit of feeling good. Feeling good in my own skin, feeling comfortable and confident. It's about getting control of me and what makes me feel good. Pushing my body just past my comfort zone feels great. I feel proud and accomplished. 

I'm finding grace, not perfection. Thanks to a great friend for sending me the book in the mail and supporting me in the journey to find me, embrace my life as it is and the journey that we are on. I'm learning to say no when I need to. I'm learning that saying yes can mean I compromise me and my happiness, which in turn effects those around me. 

So as I turn 38 today, do me a favor. Take care of YOU. Do what makes YOU feel good. If you feel like you want to do something for me, I'm asking that you donate to our goal of heading to Camp No Limits this summer. There's a paypal link on the right. Camp makes me happy and camp makes the people that I love happy too. Here's to my best year yet and to you living your best life too! 

Friday, April 20, 2018

Limb Difference Awareness Month

April is Limb Difference Awareness month. Thanks to Jen at Born Just Right, she created a great image to share.

In all honesty, aren't we all unicorns? I'd like to think so! When thinking about what I could share with you this month, I tried to think about what I wish you knew...

I wish you knew the heartache I felt when Bella was in utero and the tech said "It's a girl BUT..." I wish they could've just left it at that for that one little moment. I wish that I notice the look on the ultrasound tech's face. I wish that for a moment I could just enjoy that my first born child was a girl instead of worrying about the BUT... That moment was stolen away in an instant... BUT here's what I learned. Being born with a limb difference does not define our daughter. Here's what defines our daughter:

She's got a heart of gold.

She genuinely cares about what other people feel and how the things she says and does effects people. Sometimes it's after the fact but she's quick to think about it and reflect. She learns and grows from those things.

She loves music, mostly country music. She loves dancing with her daddy in the kitchen and dancing with her mama in the aisle at church.

She'd be a fruititarian if she could. She's not a giant fan of veggies or of meats. Textures can be a little weird and turn her off totally from a food (she might get that from me!). Sometimes she'll venture out and try new things but mostly, she likes the things she likes and she knows it.

She thinks her mom doesn't use math. :) It's true, she thinks I don't use math all the time in my job and always is quick to tell me I don't know third grade math (heck sometimes I don't) but math is not her favorite subject.

She likes history. She likes learning about the history of our country and has a knack for people that are famous in our country, like Helen Keller and George Washington. She loves reading about history and hearing about history.

She knows her teacher is a bit strict but that she's the perfect teacher for her. She knows how to push Bella to do her best work and how to give her space when she needs it.

She doesn't like to be treated different. She might not do things the same way you would, or I would... but there's a million ways to do one task and accomplish great results.

She's not a girl with a limb difference. She has a name and a million other traits that make her unique. She's a girl who happens to be born a little different but that doesn't define her. Don't let your differences define you. Be unique and embrace those qualities!

Tuesday, April 3, 2018

The world of glasses and kids

Thank goodness for school nurses and updates in technology! A few weeks ago, I received an email from the school nurse stating that Grayson's screening came back for anisomitropia. Say that 10 times fast! Off to google I went, I know, I know, I have pediatric nursing textbooks at home and many pediatric nursing resources at home BUT I chose google. Roll your eyes now... but I did! It quickly answered my question of what exactly is that and does he need to see an optometrist. The answer was yes, period.

I immediately scheduled with an optometrist that I worked with when I did the vision screenings at school. What I didn't realize is that all kids were being screened for was near-sightedness and not far-sightedness. Turns out Grayson is super far-sighted in one eye and he was missed. Whatever new technology they use showed that on the screening.

First thing last Monday, we saw Dr. Ryan. He was SO patient with Grayson, who can be shy and quiet when he's on the spot. He tried to force out his favorite animal and talk to him. Instead, silence. I tried too and he was still pretty quiet. Turns out, he needs glasses to level the playing field for both eyes. He *might* not need them forever but if you know me, I often don't even know what's going on next week. We'll focus on one day at time. So for today, he needs glasses. For today, we'll focus on how to make him feel good about getting glasses.

So who picked the glasses? Not even a shadow of a doubt on who picked them if you know me... Grayson did! Several schools of thought here. HE has to be the one to wear them when he's awake, all of the time. Which means if HE doesn't like them and feel good in them, it's highly unlikely that he'll wear them. I know what you're thinking, but what if he picks something crazy or bright or doesn't match the things he wears? I seriously don't care.

I let my kids dress themselves. Have you seen my children in public. Literally I push being dressed in weather appropriate attire (ah no shorts in winter!), teeth and hair brushed... pretty much that's the only battle I fight. Ryan is like "You seriously let them go to school like that?" You betcha I did because I didn't have to fight with them this morning, I didn't have to nag and complain about clothes. I find that my kids feel super confident in what they wear, even if they do look like they came straight out of a circus act. I mean when they are my age, it's pretty frowned upon to look like a circus animal or even a performing for that matter. I'm letting them rock that now. Express your personality kid, knock yourself out.

Yeah, he picked them. They are cute and they have YELLOW in them which makes them extra cool because that's his favorite color. He even took it upon himself to ASK the employee if they came in yellow and lucky him, they did! He's thrilled about that.


The limb difference thing, that's old news to us, we adapt and we move on. We've been dealing with it for over 9 years now if you count the time we worried when Bella was in utero. This glasses thing, this is new. A BOY with glasses, double new and sounds expensive. Yes I already ordered a cheaper backup pair online because well... I know how my sons play. We might be laying a few new ground rules once they arrive. Tips or tricks for kids with glasses? I'd love to hear!

The joys of being a mama

Being a parent is NO joke. I just had a conversation with one of my aunts about how as parents we do the very best we can and sometimes its ...