I’ve read a very touching story and I want to share this…
Where do I even begin (part 1 – Saturday/Sunday)
Before I recap my last few days, I wanted to share some information sent to me by a few of my mommy’s friends who called their separate insurance providers and asked about SMA testing. Here’s the results:Friend #1 – “We will cover the entire balance at no cost to you.”
Friend #2 – “You will be responsible for a $50 copay plus 10% of the total balance due.”
Quest Diagnostics offers the test for $950 when billed to insurance, so Friend #1 could be tested for FREE and Friend #2 pays $145 ($50 + $95) to find out if they are carriers of the SMA gene and stand a risk of their children being born with SMA or as SMA carriers. Ironically, and what appears to be the norm, neither of my mommy’s friends had ever been offered the SMA carrier gene test.
Daddy told me when he was much younger, there was an angry Canadian woman who wrote a song about situations like this, so I looked her up on YouTube & apparently daddy isn’t the only one who knows her.
On a somewhat positive note, daddy just got off the phone with his friends who’d just left their 23 week exam and before they could ask about SMA their Ob/GYN mentioned it to them. Their Ob/GYN knew all about me and said that SMA has become a hot topic of late and he felt compelled to start offering the test to all of his patients (new & old). My response to that is, way to go Mr. Ob/G, but why did it take 23 weeks into my daddy’s friends pregnancy to make you feel compelled to mention SMA to them, when you should have been compelled years ago?
Daddy told me when he was younger he remembers waiters used to politely ask, “would you like desssert?” But now they bring out a tray with every dessert on it, let you see it, smell it, and then they tell you every last detail about pie, cake, mousse, brownies, ice cream, and creme brulee until you submit to the guilty pleasure of every bite until there’s only one bite left…as if you’re saying to yourself, it only counts if I eat the whole thing. My first thought was to say, whatever that means, but then I realized what daddy is trying to say is if we can convince waiters to shove dessert down our throats and provide us details about each one, then we should be able to convince doctors to force in-depth details about simple blood tests to us, especially when they can determine the potential risk for life altering/threatening diseases.
Then I reminded daddy that sometimes dessert, just like SMA testing, is FREE and who says no to free dessert? Then daddy told me that if dessert wasn’t on the menu, most people wouldn’t even know they could order it and the waiters probably would forget to offer it. He also reminded me that nobody likes a whining baby so I should stop myself short of getting back on my soap box and just tell everyone about my last few days…hey I know what that means!
After our long confusing day Thursday, an even longer day Friday, and then being told checkout was Saturday morning, we were all excited to be heading home. But then someone dropped a ball somewhere and because they fumbled, there was some confusion and mommy & daddy were told the earliest we could leave would be Sunday morning around 2-3am. It was about that time that mommy looked at daddy and said something about it was about to get ghetto up in here and she was going to throw some bows on people. I told mommy that sounds like fun, but since I have limited mobility in my arms and can’t throw anything, would it be OK if I keep my bow right where it’s at?
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| Maaaaaaaaaaaandela! |
About 30 minutes later, without any bows being thrown, a very nice doctor came in and told us they found the ball that had been dropped and we were free to leave. Daddy whispered to me, “did they say we can leave for free?” – he’s soooo silly.
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| We came, we saw, we partied like Rock Stars! |
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| Even Rock Stars have to sleep! |
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| I was stinky so mommy gave me a sponge bath when I got home. |
Sunday:
After a good night sleep in my crib, it was time to rise and shine and say hello to all of my toys, but apparently I was so out of it after coming home from the hospital last night that I didn’t even realize my room had been redecorated. Personally I liked my room better the way it was before, but don’t tell mommy & daddy because I think they spent a lot of money on the changes and I don’t want to offend them.
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| Before |
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| After |
Items I Can Scratch Off My Bucket List:
2. Wear a big bow on my head
3. Party like a Rock Star
4. Get a sponge bath
5. Redecorate my room
6. Have an SMA Awareness fundraiser thrown for me
Where do I even begin (part 2 – Monday/Tuesday)
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| You think you’ve had bad hair days? |
This much I do know, my oxygen levels and heart bpm’s (beats per minute) are almost always lower in the early mornings, mid-day, and evenings than they are in the late morning. I think I’m going to have to give up my late morning soap opera’s, because my oxygen drops and my blood pressure rises whenever I think about the fact I’m relegated to watching All My Children re-runs. And don’t eeeeeeeeeeven get me started about how Susan Lucci only won 1 Emmy after being nominated 21 times.
That’s probably why my levels went crazy and I ended up back in the hospital on Tuesday morning, but mommy & daddy seem to think it’s because they were misinformed as to how fast and how much milk they should feed me through my new Glam-Tube and it was causing major reflux issues which effected my swallowing and breathing.
But hey it wasn’t all bad, because I got to ride in an ambulance with two muscular firemen who wouldn’t take their eyes off of me. If they’re reading, hi guys, thanks for the ride, and you know where I live so don’t wait for me to call you next time, just come on by and say hello! Also, I met a fan who told mommy and daddy she’s been following my story and that she met a superstar that day. I swear, if Brad & Angelina had one of their fifteen kids in the hospital at the same time as me and noooooobody told me, then I am not going to be very happy.
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| I played a joke on my Aunt Claire when I told her she could ride my pinata piggy…tee hee |
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| I ate a cupcake! |
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| Mommy & I made a ball with Play-Dough! |
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| That’s a Blow Pop…mommy kept telling me to say from Charms…whatever that means. |
Items I Can Scratch Off My Bucket List:
5. Meet a fan
I Fly with the Dragons 