Wednesday, August 16, 2017

Backpack shopping tips

1.     Pick the right size- I’ve always opted for a normal size backpack, not the kid size.

2.     Pick something durable- Yes the elmo one is SO cute, but it’ll wipe out after just a couple months of school. Then, you’ll be buying another $15 backpack that will meet it’s death soon after… by the end of the year, you’ll have spent at least $30 on backpacks.

3.     Pick one with decent straps- The straps are what they feel on their shoulders, the more padding, the more comfortable. They should be adjustable so you can fit your child correctly, curved straps are also more comfortable for daily wear.

4.     Pick one your kid likes- This ensures that they won’t freak out after a few months. The other thing about character backpacks is that my kids are over that character pretty quickly. We’ve always picked a design that’s more neutral.

5.     Zippers, snaps, buckles- does everything work with ease? Highly important. We bought a cheap backpack that had a zipper that lasted for 2 months. We’ve also had threads break and get caught in the zippers.


Have fun with it! We picked Grayson a bag that was out of our normal qualities and it failed. It was the perfect style with a wolf on the bag but it wasn’t durable or comfortable and the zipper was a big bummer. Bella, however, has had the same bag for two years. She was able to get another bag at a rummage last year that was the same brand but a different style. We typically stick with Jansport because their quality is amazing. I’ve had the same Jansport bag since I was in nursing school, 15 years ago! Are you kidding me? That’s serious quality. That bag went through the ringer and back.

Tuesday, August 15, 2017

Struggle bus

Anyone else riding the mom struggle bus? We started the day with two out of three kids asking for crepes and one kid asking for a breakfast smoothie. I did just that, I made a breakfast smoothie for all three kids AND crepes for all 3. I was in the kitchen for about an hour, prepping homemade crepes, smoothies and doing dishes.

Next up, tears. Tears from not enough Nutella on a crepe, tears from having no more Nutella, tears from a tummy ache from too many crepes, tears from having to turn off cartoons, tears from not JUST mangos in the smoothie, tears from a sibling touching you, tears from a sibling touching another sibling, tears from having to help clean up the house… yeah so lots of tears.

Some how, some way, the kids managed to play for a solid hour without fighting. They made a mess from hell from they were quiet. That could mean trouble, big trouble. In the moment, I opted to take it… my house wasn’t burning down (yet!) and my kids were quiet. Sometimes you take the quiet and the mess, because we all know they typically go hand in hand.

Then I opted to create some sanity for myself, prep for the gym. That would provide me with a good soul lift, a good sweat, the feeling of being strong and in control. I also decided to pack swim suits and pool stuff, just in case.

Well, just in case came… and went. People were losing their shit once again before we left the house. It was like trying to wrangle three wild circus animals into a cage… did I mention that they are different animals and aren’t even in the same circus? Oh and they eat each other?! You laughed, you know you did. That’s how it felt.
 
Today, I rode the struggle bus. At the end of the day, I sat on the back porch and cried while my husband held down the fort. Thank God for being partners in this madness. I was able to sit there and cry for as long as I needed too. He was supportive. I’m thankful for having him on my team and being my biggest support.


Today, the struggle bus pulled into the station at 7pm when their little butts hit the sheets. Today, I did the best I could. It didn’t seem good enough. I felt like I failed more times than not. Today, we all made it out alive. Today, I did the best I could. Tomorrow is a new day.

Friday, August 4, 2017

Be the change


Bella has a way to make everybody feel like somebody. I'm not sure where exactly she gets it. No one is overlooked when she is around. She is genuinely concerned about everyone. She really has a way to make people feel included and loved when she's around. It's one of the things that I adore most about her.

I challenge you to take a little lesson from my girl. I learn daily from her. I learn how to really put myself out there to make people feel included. Last night at a playdate for my soon to be first grader, there were many parents I didn't know. While I'm usually pretty social, I tend to stick around the people that I know best. Last night, I thought of Bella. At that playdate, I walked around and tried to introduce myself. I tried to at least have some sort of conversation with people.

 I want Grayson to have the best opportunity in school. I want parents to know me and feel comfortable having their children at our house. I want them to feel like I at least tried to connect with them. Part of him having great opportunities is how engaged I am as a parent. Be engaged with your kids, meet their friends, meet the parents, talk to them all. Part of me engaging with the kids is getting to know their friends. It allows me the ability to know their friends, know how they are being influenced at school and have their friends feel comfortable with me.

Again, take a lesson from my girl. Be the change!

Wednesday, August 2, 2017

Bike victory!

Like I said in this post every day is a new day. We went on a play date yesterday and there was a strider bike that Bella decided she wanted to try.

"Mom, this isn't that hard!" I smiled and watched.

"Mom, we should take the training wheels off of my bike." We had a little conversation about how she first needed to work on her confidence and comfort so that bike riding was fun. Once that happened, we'll take the training wheels off.

Last night when we got home, Bella wanted to go on a bike ride. The boys were losing their minds one at a time so I opted to stay with them and have Ryan and Bella go. She came bursting into the house when they returned

"MOM, come watch me! Watch HOW FAST I CAN GO!" she was beyond excited. Fast for her is different than fast for Luca (his whole life is at a high speed level!)

I went outside and watched, I videoed and took pictures. I told her how proud I was of her. She talked about how she felt confident and comfortable.

"Mom, I'm getting WAY better at this. I feel so good riding my bike. It's fun and I feel comfortable now!" I was proud. I was proud that she had initiated bike riding, that she initiated speeding up a little, that she didn't get off and pull her bike... that she persevered and kept going.

Proud mama moment, proud daddy moment and most importantly, she was proud of herself!

Saturday, July 29, 2017

Camp No Limits- The last full day

The morning ran the same, breakfast, energizers, OT/PT, life skills and sibling groups, lunch then peer support groups. During OT Bella got to try some other prosthetics, which was really fun AND she got to test out the i-limb. Can I mention that the i-limb costs $90,000?! Holy batman. It was really interesting to watch all of the upper limb difference kids try it. Bella was able to trigger it perfectly to get the hand to open and close... to which her response was "This will be my next hand!". Lord help me! I know there are grants and other programs that make this sort of thing possible. If she continues to use her sports arm, then we may pursue something more.


(Hungry hungry hippos, human style!)
Next up, slip and slide. This was insanely fun! Who knew?! We watched campers, staff, volunteers and parents go down. The facial expressions while watching at the bottom were hilarious! I know you are dying to know if I went down it... you bet! I mean it's not every day that theres a slip and slide that's big enough for an adult. Ryan didn't go down it. Loser :) I'd be lying if I said I wasn't afraid for my life while I went down. I did slide off the end and into the grass. It was quite fun and the kids are sure to agree.

Water front activities were next. We found out that Camp Cross doesn't have a provision in their contract for stand up paddle boards which meant that an adult had to be on the paddle boards when someone that was under 18 was using one. Bummer for the kids because they really enjoyed it. Next year, Mel talked about building this into our Camp No Limits programming. However, if you know someone in the Idaho/Wisconsin area that would come to Camp Cross and do adaptive sports, we could have a whole day of adaptive water front activities! Please connect them with me if you do! Email me





The last night is always a slide show, talent show, and dance. Honestly, I want to cry every time I see the slide show. There are so many moments that other people capture of my kids or other kids that make my heart melt. Watching ALL of the kids at camp grow in just a few short days is worth every penny. They make tremendous growth in activities of daily living, being more effective with or without prosthetics, running, walking, buttoning, pony tails, shoe tying... most of all, the amount of confidence they gain in this time is worth a million dollars.

The talent show... oh dear Lord where do I begin... with this I will share one photo before I tell more.
Please tell me that you didn't laugh? I about died a million deaths! What good sports these guys were! 

Shine's hair shop was a big success. The "customers" left with lip STAIN, moles, mascara and who knows what else. The best part of the talent show is seeing the kids have SO much confidence to present something that they are proud of or be creative. I love it! Not to mention, I loved that Ryan was willing to put on a dress, witches hat, wig and feather boa all for his daughter. I got a good one!

They finish the night up with a dance. By this point, Bella was exhausted. She's our girl that has no problem saying when she's ready for bed. About 45 minutes into the dance, she asked to go to bed! It was fun seeing all the kids just let loose and dance around. Even parents and volunteers got in on the action. Truly no judgement, which is the best part of the whole thing! 


Friday, July 28, 2017

Bike battles

Each day brings different challenges and battles for each of us. Each day is a new day, we can decide to pick ourselves up and carry on or to sulk. Today, Bella decided she was going to feel sorry for herself. Everything was wrong.

The boys rode too close.

The boys rode too far.

Daddy pushed her too hard.

Daddy told her to go faster.

Daddy gave her encouragement.

Daddy didn't give her enough encouragement.

The bike seat was up to high.

The bike seat was too low.

The bike basket was bumping around.

Her training wheels were too wobbly.

I adjusted her training wheels too much.

Life sucked big time. The bike sucked big time. We all sucked big time. Today was not her day... we'll try again tomorrow.

Thursday, July 27, 2017

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!


Backpack shopping tips

1.      Pick the right size- I’ve always opted for a normal size backpack, not the kid size. 2.      Pick something durable- Yes the el...