Monday, April 24, 2017

Off to Shriners we go!

Friday we (as in we I mean Bella) have an appointment at Shriner's Hospital in Chicago. We are discussing "Sports arms" specifically and joints. Some things you learn as you go and currently we are learning that we need something different for Bella to be fully included in PE. While her PE teacher is amazing and is doing everything she can, we both thought now was the time to reach out to the "big dogs"...

Bella's pediatrician is no expert in limb differences. I mean, while they seem common to me because I have a community filled with people with limb differences and amputations, they really aren't something that everyone knows about. For us, it's a lot of advocating on my part and education. I'm the one talking to her pediatrician about her needs and advocating for things that may help her.

Bella does have a wrist in her left arm which complicates things a bit. Due to her wrist, we have the elbow joint AND the wrist joint to worry about. We have to be sure that we don't damage either of those joints. She does have some hyperextension in her elbow (which tends to run in our family) so that could cause her problems if we aren't careful. We also have to be sure that she's not putting too much pressure on the bones in the wrist joint when she's doing things.

The beautiful thing about having a community of friends is that I posted about sports arms on Facebook. My feed was filled with people who have ideas or suggestions and pictures. This is priceless! Building a community is essential for us to succeed and make life a little easier for Bella. Aside from that, couldn't we all use a little support from time to time!

Wish us luck! I'll update again after our visit!

Tuesday, April 18, 2017

Float Milwaukee Review

Sweet baby Jesus! Where do I begin? I’ve wanted to try floating for some time and it was never a priority until I won a float. A free float? Well that certainly makes it a priority!


I arrived and parked in a gravel lot across the street (free parking). I took off my shoes, put on the sandals they had and was greeted right away. I signed a waiver while they were finishing the filtration on the pod.

Once you enter into the hallway, it feels very much like a spa. It smells clean, the inside was clean and the colors were neutral and calming. The young man working showed me around and then took me to room 5 where I would see my “floating” pool. *Cue to angels singing* I was given the full rundown on how things were, how to control the light, the noise, where the panic button was located, etc. He explained to shower prior to entering and then rinse off after. He gave me a very good rundown on everything and I felt like I was very informed.

(I'm in love with that art work!)


I opted to float in the open pool when I made my appointment. I’m admittedly a little claustrophobic so I wasn’t sure the pod would be for me. I’m happy with my selection.


The young man left and the magic started. I put in the silicone ear plugs. They don’t block the sound, they simply help to keep the water out of your ears. He suggested I try them as not to distract from the floating experience and I’m glad I did. He also suggested I use the ring for your head just to be sure that my neck would fully relax. I took a shower and got in the pool in my birthday suit.

I wish I could fully describe what happened next but it’s impossible. I put the ring behind my head and relaxed back. Instantly my butt popped up and my whole body was floating. I’ll be real, I wasn’t entirely convinced that I wouldn’t feel like I needed to use my muscles to “float”. Let me tell you, you DO completely float, there’s no work on the part of your body at all. It took a few minutes for me to get situated. My mind raced, I futzed with the position of my legs and arms but what I was doing didn’t feel natural so I just took some deep breaths and relaxed into the pool.


That’s when the real magic went down. I closed my eyes and my hands instantly wanted to be palm up and straight out from my body, my legs naturally fell apart a bit and my toes relaxed. Occasionally I opened my eyes to look around and I would be in a different position than I started. I had no clue that I was just floating around in circles in there! I continued to relax and was awoken by what sounded like a door bell. I opened my eyes briefly and then closed them again. A few minutes later, another door bell…. NOOOO, I didn’t want it to be over!

I got out, showered off and then got dressed. I used the q-tips in the dressing room just to clean the extra water from the shower out of my ears. They have other products available there as well for cleaning up and getting ready. The two people working asked how it went and we talked about my experience and theirs as well.

Does it compare to a massage? Yes but no. My husband and I weren’t convinced that I would like it “better” than a massage. It’s a completely different experience. To me, I felt more relaxed and refreshed after and less exhausted. Massages always make me want to be a bum for the rest of the day. After leaving the float, I felt energized. I also liked that it was quiet and dark, except the dim light of the pool (which I could have turned off) and the faint sound of meditating music.

Try it… today! Make it a priority, for real! I’ll be back, one float wasn’t nearly enough!


Sunday, April 16, 2017

From 1... to 2... to 3!

A mom in a Facebook group asked about having more than one child. I'm going to share my opinion here on how it all went down for us. 
(Gah so tiny!)

 Can I possibly love #2 as much as I love my first? Okay so I legit cried about this while I was pregnant. How could my heart fill up and love someone as much as I loved Bella? I remember having MANY lengthy conversations with my dad about this. He assured me that it wasn't an issue (but let's by honest I'll always be both of my parents favorite, don't tell my brother! Okay so maybe he'll read this... just kidding brother!) No really he assured me that instead of feeling like my heart was pulled in both directions, it would double. As if, I thought. He'd lost his mind and lying was the only way he was going to get another grandkid out of me.. wait I was ALREADY pregnant, now what? Yep more conversations... I'm pretty sure my husband had thought I lost my mind. Maybe I had... My dad just kept saying, don't worry it happens. Well in the end, he was right, my heart doubled, then tripled in size. 

Do I have a favorite? You betcha I do and they all know who it is! It is the kid who sleeps the longest. The kid who listens the best. The kid who isn't a giant pain in the butt... Yeah so it changes daily... or more so by the minute. Of course, really I don't have a favorite. No wait, I lied, again, the best sleeper, the best listener, the one who gives me the least amount of headaches. They all of their moments, as do I. No there's not ONE of them that's my favorite. 

Can I maintain the special bond I have with my first born if I have to divide my attention? I get torn on this one, like really torn. Do they all get enough of me? Is there really enough of me for anyone or all three? The answer is, I'm not a super hero, I do the best I can. I'm human. There are times when I'm winning at the mom thing and times I feel like I'm failing miserably. Real truth, I push through those hard times and come out learning something. 

What have I learned you ask? Well after having three I've truly learned that I can't fill from an empty tank. Mom nights are important. Late night phone calls with my friends keep me going. Making a phone call to someone who's in my shoes when I feel like I'm royally sucking, those are my lifeline. I've learned I have to take care of me. For me that means taking a break and filling my own tank. Date nights have become more of a priority as have live music and dancing. Why? Because getting dressed up and going out with my hot husband fill my tank, or as we call it "our love bank". It helps remind me why I fell in love with him in the first place. It helps me let go and enjoy being me without any obligations. Going to the gym and eating healthy also help. I've learned that eating crap makes me feel like crap. (Remind me of this when I want to eat 3 donuts in a day, or even one!) It makes me feel good about me. Having time to fill my tank, makes me a  better mother, a better wife, educator and friend. All of those are important to ME!

What are the financial implications? Girl friend, kids are an endless money pit. You will never be ready for one let alone three. You just make it happen. True fact. We buy a lot of second hand clothes when we can and it's worked up until more recently. They grow SO quick, don't waste your money on the $50 pair of shoes that won't fit next week. We also do a lot of free stuff. My kids are really looking forward to adventures around the city this summer finding new parks and new places to hike. They LOVED that last summer and keep talking about it as the weather gets warmer. Save where you can. We've figured out that splurging on a fancy car isn't our thing, we'd rather vacation. Figure out your priorities and work with it!

What if I need a bigger home? But do you? Why? We had our house on the market a couple of years ago. We pulled it after a major meltdown on my part and an epiphany on Ryan's part. We love our yard, our neighbors, the comfort of the home we've created here, the schools, a safe neighborhood, the ability we have to travel and explore. Eventually I see us living on more land with more creatures (read NOT kids!) and room to roam. I see us in an older farm house with a big wrap around porch... time will tell. Right now, it just sounds like more to clean, more to keep up with and more to spend money on. I'm happy where we are. Most of all, I'm comfortable and safe here. This is our house but really it's our home. 

How can you decide what's right for you? Only YOU can decide. I always wanted four kids. In my heart, I have four. I have three that walk with me in life and one that walks in heaven that we miscarried. My heart is full, overflowing really. I knew when we were pregnant with our tie breaker (who turned out to be Luca!) that I was done being pregnant. My heart was done, my body was done, my soul was full. 



Saturday, April 8, 2017

Denials

Our insurance hasn't been the best when it comes to getting Bella the things she needs. It feels like we are constantly jumping through hoops when we are trying to get things that we think she needs or benefits her. Currently we are STILL working with Hanger and her pediatrician about a prosthetic. 

Her pediatrician isn't well versed in limb differences which can make it slightly difficult to get the resources that we need. This means that I end up educating her pediatrician on the resources we need and then showing her why they would be beneficial. As everyone knows, those pediatrician appointments aren't that long and don't leave much time for discussion. Which isn't a big deal for most but when I need to do some education about resources and needs, this can create an issue. 

 Shriners is an amazing resource that we connected with years ago. At that time, we found out that there weren't really any immediate needs. Bella didn't want anything or find anything that she felt would be useful. Shriners was one of the most amazing hospitals I've ever encountered and that's saying a lot because I'm a nurse that traveled for some time! I opted to reach out to them again due to the issues we are currently having in PE class. We have an upcoming appointment at the end of this month. I was shocked that we could see a specialist so soon! Who's in the Chicago area? Message me if you are, maybe we could do a limb different meet up while we are there! 


Back to PE class, the teacher wants her to be independent and we do as well. Remember how I mentioned that we talked to our friend, Keegan. She had some amazing suggestions about how to help her be independent and be self sufficient without hurting herself. Again, people find those resources, use them! Keegan is an invaluable resource to us, both Bella and me as her mama. 


Stay tuned, until the end of the month!

Friday, April 7, 2017

Beauty and the Beast review

I keep seeing posts with friends asking "Is Beauty and the Beast too scary for my child?" We watched it and couldn't love it enough! It was a really great and engaging movie. It's very much like the cartoon movie... only not a cartoon.


Luca and Grayson were fully engaged. They both sat quietly and watched... well that's not the whole truth. Luca talks 24/7... yep like even in his sleep. So there were times when we had to say "Oh shh watch the movie, let's see what happens next". Like multiple times. He wanted to talk about what was happening and what he thought was going to happen next. Grayson on the other hand like our chill easy going guy, just watched and sat quietly.

Bella watched quietly and took everything in. Nearing the end of the movie, I saw tears in her eyes.

I whispered "Are you ok?"

"Mom he looks scary but if they really got to know him then they would know he's not" her eyes remained filled with tears. We cuddled a little closer.

"Mom why are they so mean to him without even knowing him? He's SO nice and so caring. He loves Belle. If they talked to him and knew him they wouldn't be afraid."

"It's just a movie  Boo Bear, don't worry" again, I pulled her closer.

At the end of the movie, we talked about it more. I'm so proud of my girl. She asks questions. She thinks deeply about things that effect other people. She cares about other people and how they feel. We've had these talks before about how people do things and it effects us.

I may not win at everything parenting related... actually I don't win at most things. With this, I win. I've done something right with my kids. Compassion is something so many people lack. Thinking about others before yourself is also something I see our society lacking. My girl, she doesn't lack either of those things. While I may not know everything, while I may be constantly learning. I'm winning at this. Treating people how you want to be treated and thinking about others feelings.

As for the movie, there are "scary parts" or parts that kids may find unsettling. The movie itself is not scary. It shows love and compassion. I highly recommend it! Our youngest is 4 and he really enjoyed it... well minus the talking but I don't think that's going away any time soon!

Thursday, April 6, 2017

Communication

A little over a week ago, Bella was doing some gymnastics during her PE time and hurt herself. She was doing a handstand and fell over as a result of her left hand slipping out from under her. We were not notified by school and Bella was in a fair amount of pain when I picked her up after school. She told me that her left hand slipped out from under her and she feel, injuring her neck. She said she told the gym teacher and was sent to the office for an ice pack. This mama bear was a little (ok a lot) heated that I didn't receive a phone call. I did a neuro assessment and checked did a solid head to toe assessment (thank goodness for 15 years of pediatric nursing experience)! I talked with her doctor and we agreed that bringing her in to the office in the morning was also a good idea.

On the way to the office that morning, I called her school. No one could tell me what happened just that she got an ice pack. Her PE teacher was in classes all day so that didn't help either. It's not that I didn't believe Bella, but I wanted to hear from someone that was with her what happened... specifically an adult. When the NP at the office asked what happened, Bella told them. When she asked me what I knew, I said just what Bella had told me because I hadn't heard from anyone at the school yet. Her eyes said it all... then her mouth "A neck injury and NO ONE called you? They should be glad she's not my kid"... in that moment, I bet the school was wishing she wasn't my kid either!

I emailed her gym teacher and waited for a response. We finally met yesterday. It did not go as planned. Initially the mama bear still had a fire under her butt (aka me!) and I was pretty sure that the gym teacher was going to go home and tell her husband about me using some choice words. Believe it or not, I kept my cool. Surprising, right?

We sat down in the lounge to talk. Turns out, Bella hadn't told the PE teacher what happened. The teacher had approached Bella because she seemed sad. Bella told her she fell but couldn't explain anything else. She sent her to the office to get an ice pack. We had a great chat about her concerns moving forward. She's never had a limb different student. The thing is, after talking to her, I know her wheels have been turning and she's been really thinking of ways to have Bella included and do everything she can while keeping her safe.

Am I saying I didn't or don't believe my child? No, not at all. I'm simply saying that there are two sides to every story. Yes I got fired up. Yes, I still think there should have been a phone call when she asked for an ice pack for her neck. It's a learning experience for EVERYONE involved. However, I went into the meeting hoping to be able to collaborate in order to benefit my child. Attacking anyone would not have been the answer and would not have allowed anyone to feel like they could come to me with an issue.

Bella made the decision to try the handstand and she didn't feel like stopping her. They have a list of activities they can try, including the crab walk, the bear crawl, the egg roll, the log roll... etc. Bella made the decision to try the handstand. Do I blame the gym teacher for not stopping her? No... why you wonder? I want Bella to do everything the other kids in her class do, I don't want to stop her or hold her back. If she wants to try, she should have that option. It's my job as her mother to keep her safe and lift her up, not break her down and discourage her.

The gym teacher had some excellent questions. Again, those wheels were turning! She wants to know how she can help Bella with jumping rope. She wants to have her be as independent as possible, which is always the goal for us too! She wants to know how much pressure is okay and how much pressure is too much on her left hand. I had suggestions for some things, which I'll share soon (so stay tuned) and other things I didn't. I commend her for really working to think of ways to help Bella. We both talked about how we don't know how to do things or how to help until the situation comes up. I'm not always forward thinking.

What did I do? I cam home and researched. I sent a text to our camp friend Keegan about joint pressure and asked her a boatload of questions. Can I tell you how mature Keegan is and what an incredible mentor she is for kids and parents alike? With Keegan's help, I have some ideas. I had some on my own as well. However reaching out to someone who lives with the difference is priceless, she has first hand knowledge about how I can help Bella.

Today, I'm planning to call Shriner's to reach out again. Our insurance is a pain and is not on the same page as I am with things. Shriner's is warm and welcoming and I'm sure they can help. They can also help us be an advocate to our insurance to find what fits Bella's needs best.
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Monday, April 3, 2017

The one with...

I once had a friend that had a blog titled "The one with..." I was reminded of her blog today when we were hanging out and crafting... looking through old pictures of our babies. We started our blogs when our oldest, both girls, were teensy, weensy babies. Our girls are super close in age and have been around each other since they were tiny. We were lucky enough to have boys together at the same time too. I couldn't convince her to have a third. She's smarter than me! :)

Today we got to hang out, craft and catch up. Both of her kids are in school (see I told you she was smarter than me!) and Luca is still home. We talked about what's going on in life and what our latest Pinterest projects are, as if we truly have a ton of time. I worked on the kids baby books (better late than never!) and she worked on scrapbooking some of their amazing vacation. She's the kind of person you can see every day or not see for months and it's like you never missed a beat.
She's the kind of friend every woman needs. She lifts you up, she's supportive. You can tell her that you want to lock your kids in the closet and she laughs and doesn't call CPS. (Don't worry, I haven't actually ever locked them in there!) She reminds me that I'm not losing my mind completely. She supports my crazy projects, rejoices when they are successful and laughs when they aren't. She's the kind of person that you can talk to about anything or nothing at all. She doesn't judge me. I can go to her house unshowered, with my hair a wreck and no makeup and she doesn't run for the hills... Heck today I wore workout clothes and didn't even workout! 

We've embraced so many stages of life together. Cloth diapering, baby wearing, breast feeding, toddlers, threenagers, kindergarten (twice now!), our kids learning to read, sleeping through the night and utter lack of sleep, healthy eating and binge eating... As we both embrace these growing babes, our marriages, our work, I embrace my friendship with her. I'm thankful that 7 1/2 years ago I took a random exercise class at Babies R Us and we continued to connect. I'm thankful that we've remained friends all of these years. I'm thankful that she's that friend that I can always feel comfortable with and always feel happy when I'm around. Everyone deserves that friend, I'm lucky to have one!

On being thankful...

Each November I try to write on Facebook some of the many reasons I am thankful. This November started out with a bang. So far it went like ...