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!


Tuesday, July 25, 2017

Camp No Limits- Day Two

I swear, each day of Camp No Limits gets better. You never want it to end. What's not to love? There are tons of new friends, some old friends, kayaking, paddle boarding, eating, crafts, games, swimming, exploring, learning, endless support... Yep, every single minute I love.


Each morning starts the same at camp. Breakfast around 8 am for about an hour then energizers. Energizers are energizing! You dance and laugh to start the day, do some core work, do some stretching, seriously we should start every day like this. It always brings a smile to your face.


After energizers, we break into groups. PT, OT, and sibling groups are the first groups of the day. Usually the upper extremity groups works on some life skills, like shoe tying, braids, pony tails, buttons, zippers, socks... I know the lower extremity groups work on running but I'm not sure what else since I'm usually hanging with Bella in the upper extremity group. This year at camp, Bella taught a girl, J., a tad bit older that has two hands, how to tie a shoe with one hand. J was more than attentive and really interested in Bella teaching her. It was so sweet to watch them both. Bella's passion about teaching and sharing how she does things. J focusing and determined to learn while being kind and warm to Bella.

Sibling groups are super fun, just ask our boys! They went kayaking, paddle boarding and who knows what else. I do know that the boys come back and really want to go back with the sibling group. They love every moment of sibling group!
After this is lunch, then peer support group. Again, siblings go off and do one thing. "Campers" like Bella go to a support group that us parents are allowed to attend. Parents go to another support group.  This is super helpful for all parents and it also helps you get to know the other parents. This year, I learned a ton from parent support group about prosthetic costs and such. I feel like every single person in the group is valuable and brings more to the group.


Next up for Idaho Camp No Limits, changing and water front! The waterfront is super rocky. They did say on the website that water shoes would be helpful and I almost laughed outloud. Water shoes and fanny packs go in the same category... seriously people, I'm so glad I bought some. The waterfront is super rocky and would have been pretty painful without water shoes. Mine were super cute too... or not... I mean can water shoes be cute? 
Bella also got one on one swimming lessons from Travis, he's an incredible dude! Bella ran down the hill earlier in the day yelling "Daddy" and it was actually Travis. They both have dark hair, big beards, board shorts and are built similar. She got all the way to him before she realized he wasn't her Dad! I knew from further up the hill but let her get all the way there. It was hilarious! Back to the swim lessons, Travis was a swim instructor for many, many years and he spent a chunk of time really helping Bella. What a great dude! 


Next up, changed, dinner then Human Clue. Apparently it's a Camp No Limits Idaho tradition. It was unforgettable. It was so fun and every single person that was involved had a great time. I didn't take a single picture because we were too busy trying to figure out which person committed the crime, where and with what. Super fun! 

The nights at all the different camps we've attended, ends in a campfire. CNL Idaho was just the same... except Mel melted all the marshmallows together so no one could eat them (JK Mel- we love you). Bella stayed up and we put the boys to bed. The beauty of the end of the night is that there are so many parents you've met that any number of them will watch after Bella so the boys can go to bed. There's also the "bigger" campers, like Sydney, Keagan, Jamie... and a number of others. Off to bed they went and she put some gooey marshmallows together and made a s'more. 

Day two did not disappoint, are you ready for what day three offered? 

Monday, July 24, 2017

To my Bella Boo

Bella,

How is it that 8 years ago today I was panicking because I was about to be a mother? I waited for this moment for what seemed like all of my life, yet somehow, I felt so unprepared. I was nervous to be responsible for you, would I give you enough of me? Would I make the right choices as your mother? Would I survive on little to no sleep? Would I produce enough breastmilk? Would you know how much I loved you?


Eight years later, I can say that I've done the best I can as your mother. I've given you all of me at every moment. You are worth it my sweet girl.

Your kindness amazes me. Your continue to think of others before yourself. You are always worried about making people welcome and happy. You have a way with babies, they love you. You make friends every place you go. You are becoming more confident. You are facing your fears. You are reasonable and do a great job expressing what you need from us. You are growing up to be such an amazing little girl. I love watching you interact with babies and how you make silly faces and get them to smile. I love watching you interact with other kids and holding their hand and taking the lead. I love how you tell people about your hand and then continue on with your activity. Watching you with special needs children melts my heart. You are so patient and so sweet. You really are thoughtful in your interactions. I'm so very proud of you. I love going to goodwill with you. I love watching you learn about money and really think hard. I love listening to you read and watching you create. You amaze me.

Happy 8th birthday my love! Thank you for making me a mama. I'm so lucky to be your mama! I'm happy you are my only girl. You make me so proud and I hope I make you proud too. Happy birthday Bella Bug!

Sunday, July 23, 2017

Face your fears

Earlier today I mentioned going a  bike ride. There was lots of excitement and everyone agreed. Should I mention that riding bikes with kids is like waiting for a train wreck to happen? No, really. Usually there's crying, screaming, crashing, cuts, bumps, bruises, more crying and frustration by all parties involved. Imagine all that times three...

One example: riding down the street... 
Kid one- crashes into a grass ditch and refuses to get back on the bike.
Kid two- is actually pulling their bike and not riding at all
Kid three- driving around like a wild drunk, crashing and doing it again... faster

(Pre-bike ride today, super excited, can you tell?!)


That sounds fun, right? Come on, doesn't it make you want to bike ride every day? Yeah, me neither. So for awhile, when we biked, I walked.... while ONE kid rode. This saved us all a little sanity. That can only last for so long though, so tonight I offered while praying to Calgon, God, Buddha, and anyone else that might be listening. 

Bella was SO excited, then I made her grab her new sports on with the bike attachment. Then she cried. 

"Mom, I do not want to do this. You are SO mean. Why are you forcing me to do this? You never listen to what I want. You are the worst mom ever. I don't even want this thing (pointing to the prosthetic). I never even asked for a bike hand. You wanted that, not me. I ONLY wanted the one for tumbling. UGH! I'm not going"

"Uh yeah you are. I'm sorry that you are not happy but you are trying this. I'll be right there to help you but you are wearing the prosthetic for ONE block."

More tears and frustration. "FINE but ONLY for ONE block!" 

"Sounds good!" she doesn't get a choice to brush her teeth or comb her hair because as her mother, I know best. She was not getting a choice about at least entertaining the option of trying the bike hand for one block. It's not like I was asking her for something crazy. It was completely reasonable and how would she know if she liked it or not if she didn't give it a chance.

Away the boys, Bella and I went down the street. Fifteen minutes later, we were three houses away. Yes that was NOT a typo, three houses people... HOUSES, not blocks! Bella was barely pedaling. The boys... see what I said earlier, they are those kids! I kept encouraging and giving support.


"You've got this Bella!"

"Good job pedaling, use your strong legs!"

"Go girl"

"You've got this!! Keep going!"

"Look at you! Nice work pedaling! You are doing great!"

"Keep it going sister!"

"Deep breath in and deep breath out, keep trying"

"Mom, I'm trying. I'm facing my fears. I'm really, really afraid. I'm scared I'm going to fall. I'm afraid, what if I fall? I'm trying hard mom. I'm breathing in and out. I can do this. I can try new things." She said to me and my heart took a hit. She was facing her fears of bike riding. She's unsteady even on training wheels. She's nervous and afraid. She needs a lot of encouragement. She was getting it. All that really mattered was that she was trying. 

About that time, her dad pedaling down the street on his bike! She was so excited. He rode up to the boys and stayed with them and would pedal back down by us. Slow and steady we were getting there. All of the boys in our crew were extra patient. 

At one point she asked to take off her prosthetic and I agree to let her at the end of the street. She didn't argue and kept going. At the end of the street, she stopped and asked if she could take it off. I helped her then stuck her prosthetic arm under my arm and we both rode off. About two turns of the pedal she piped up. 

"Mom I actually think it's easier with the prosthetic. Can you help me put it back on?" I did. I was actually happy that I had pushed it a little harder than she might have liked. She realized that it helped her be more steady. It helped her to have full control of the handle bars. 

Around the corner we went, slow and steady. We pedaled back in the driveway. I stopped to tell her how proud I was of her and that she did a really great job trying so hard. She really faced her fears and grabbed the bull by the horns. I shared with her that I was so proud that even though she was afraid, she still tried. That I was really proud of I told her, for trying! 

As we parked our bikes, she had one more thing to say...

"Mom tomorrow's my birthday. Do you think we could get me a new bike?" I simply smiled. We'll see!

Friday, July 21, 2017

Packing up for Camp No Limits

Before I start, a BIG thing you to everyone who has made this experience possible for all of us. Without your help, there is NO way that we could fund this experience for our family. I think it's highly important that we attend Camp No Limits for several reasons I've mentioned before and I'm sure you'll hear again after this camp is complete.

I've been packing for camp for several days. Packing with three kids is no easy task. I have a LONG, detailed (VERY detailed) packing list, as well as about 8 bags all set out. This trip we tried to get away with having each kid carry their own backpack and then a carryon. At the last minute, Ryan decided that was a bad idea and that we should try to condense down. We ended up with every one of us carrying a backpack, 3 carry on's and 2 checked bags. This cost us $50, however this was still a better deal than any other airline that had free bags so it worked out.


Here's what worked for us.


Sarah
Bella
Grayson
Luca

Toiletries
Misc
Toothbrush
Toothbrush
Toothbrush
toothbrush

Toothpaste
Snacks
Shorts
Shorts
Shorts
shorts

Sunscreen
Gum for plane
t-shirts
t-shirts
t-shirts
t-shirts

Bug spray
CNL raffle
Pants
Pants
Pants
Pants

Kids meds
Blankets X5
Jacket
Jacket
Jacket
Jacket

Baby wipes
Sheets X5
Underwear
Underwear
Underwear
Underwear

Hand sanitizer
Pillows X5
Bra


diapers

Soap

Flip flops
Flip flops
Flip flops
Flip flops

Shampoo

Tennis shoes
Tennis shoes
Tennis shoes
Tennis shoes

Conditioner

Water shoes
Water shoes
Water shoes
Water shoes

Deoderant

Hat
Hat
Hat
Hat

Hair brush

PJ’s
PJ’s
PJ’s
PJ’s

Swimmer’s ear drops

Makeup
Bunny
Giraffe
Frog?

Diva curl

Water bottle
Water bottle
Water bottle
Water bottle

diffuser

Sunglasses
Kindle
Kindle
Kindle


Paperwork
Prescriptions
Head phones
Head phones
Head phones

Razor
itinerary
Swim suit/coverup
Swim suit
Swim suit
Swim suit

Brush/comb
Hotel papers
Cell phone/charger
Booster
Booster
Car seat

Diffuser
Car rental
Towel
Towel
Towel
Towel

Chapstick

Wash cloth
Wash cloth
Wash cloth
Wash cloth

Tampons

Ear plugs




Pads

Lip gloss






Glasses






Pony tail holder







While this may seem overboard when you are packing, it worked for us. Maybe it'll help you. Packing for all of us makes me stress out (poor Ryan got to deal with all of that!), having a list helps ease some of that. I will say that there's only one thing that we missed. Luca's headphones weren't working so we ended up buying a $2 pair on the plane, not the end of the world. I've also added a few things on since the original list so I'll come back and update this post when I find that and you'll see the word "UPDATE" at the top :) Hopefully it helps!

Successful 504 meeting

Last week, we had the official 504 meeting. It happened at 7:30 am on a school day. This made it easier for all the parties involved to be t...