Crooked Love - A Novel by Heidi Ferrer

Hey Blogstalkers.  So my neck is still being a pain in the butt neck so I am still somewhat out of commission.  Mainly I am lying on the floor with my legs on a chair and watching "It's A Wonderful Life" on repeat while waiting for Ryan to get home and hand-feed me bits of his sandwich.

I'll be back at you bright and early next week because SUNDAY IS THE DAY RYAN IS DRESSING UP LIKE SANTA AND THERE WILL BE SO MANY PICTURES/VIDEO ON MONDAY!!!!!!  And also, less importantly, Tuesday is our 2 year wedding anniversary, so I have a post planned for that as well.  And I still owe you all a review of The Casual Vacancy but it's been hard to read with all that's going on lately.  Because it turns out that if you read a book while on muscle relaxers you do not remember what you read the next day.

So I thought today would be a good opportunity to help out a friend.  I'm sure many of you know Heidi  from Girl To Mom which means many of you probably know by now that she's written a book!  A book that supports a very good cause.  So when Heidi, who I met at BlogHer this year and who gave me a big hug even though I almost certainly smelled like bacon (there was SO MUCH bacon for breakfast) asked me if I would mention her book here, I thought I would do her one better.

So without further ado, here's Heidi.

Hello to Lauren's adorable readers! My name is Heidi and Lauren is very generously letting me guest blog and share my story with you. I'm a fellow blogger (GirlToMom.com) and the reason I started my blog, which led me to meeting Lauren and stalking her, is the reason for this post.

The holiday season is all about being thankful and I have a lot to be thankful for, my little boy Bexon, age 5, has a rare form of scoliosis that is potentially fatal in babies and young children, but he was saved by an unlikely village of heroes.

At age 19 months, his little spine was so dangerously curved; his back looked like a letter "C." The craziest part was that it happened really fast, at age one his spine looked pretty normal, with a slight curve that was almost unnoticeable to a casual glance, but over the next six months it veered off course like a train hurtling off the tracks.




I've heard it said that if your boat aim is off by even one degree as you set sail for Hawaii, you will miss the island by 100 miles. That’s what it's like with Progressive Infantile Scoliosis, the slightly curved spine gets way worse as the child goes through rapid spinal growth before age two. (Interesting fact: The human spine grows 50 percent of its full adult length before age two.)

The other unbelievable part of our story is that no doctors in the entire city of Los Angeles, and we went to "the best in the West," gave us the right medical advice or even warned us that our baby's spine could crush his heart and lungs. We found the right treatment, a series of non-surgical body casts, through a Google search.

Without the Internet, our boy's life would've been forever altered for the worse, he would've endured horrible multiple surgeries from age three on, been deformed and fragile and suffered pain, not to mention psychological damage. He couldn't have jumped or been bumped in the lunch line at school, let alone play sports.

The reason we're so lucky is we found a non-profit charity started by an incredible single mom in Colorado named Heather Montoya, whose daughter Olivia has IS. Heather helped bring a form of casting (body/torso casts) that are the only cure for this condition if begun in time, ideally starting under age two. At nineteen months, we were almost too late.

This treatment was invented by an India-born female doctor named Min Mehta who practiced in the U.K., but it's only done in the U.S. because of Heather's advocacy and Bex’s doctor being willing to learn the technique.

As a mother, I wanted to crawl into a hole from the fear and horror of this situation, honestly, I wanted a morphine drip. I wanted to be put into a coma until it was over (I developed PTSD, Post Traumatic Stress Disorder and depression), but you can't give up as a parent, you have to advocate for your baby and fight. 

My fear tuned into anger and outrage that this treatment wasn’t done in the whole state of California, it was hardly done in the U.S. at all. We travel to Shriners Hospital in Salt Lake City, Utah for medical care, and we owe them so much- without Dr. Mehta, Heather and Olivia, and Shriners, we would’ve been lost. 

Bottom line, other kids like our son were (and are) falling through the cracks every day, doctors were making 1.5 million dollars per child from these surgeries and it was in my opinion, criminal, when these non-surgical casts are a cure.

Cut to today. Bex has had 10 Mehta/EDF casts from the age of 19 months to 4 years old, and he is now in a night time only, removeable brace. His spine went from 63 degrees at 19 months (zero being straight) down to 1.21 degrees at age 5 in his current brace!




While I was in the thick of his treatment, before we knew what my son's outcome would be, I began writing a novel called CROOKED LOVE about it, in order to get the word out to save more children and provide comfort to other families in this boat. The characters are fictionalized, I made the mom younger than me and a single mother, because I simply can't imagine how moms like my friend Heather survive this alone.

I added some subplots and twists and turns, humor and a love story to make it a good, fun read, but the medical facts and the emotions are all true. (The book is available on Amazon in paperback, with the Kindle and Nook e book versions coming next week that will be a lot cheaper at $5.99.)




Two dollars from the sale of each book will go to The Infantile Scoliosis Outreach Program and Shriners Hospitals (one dollar each), and I'd love to give three signed copies to you guys. Take it away, Lauren and thank you so much! I will be closely following your yoga moves and delightful Christmas cheer. XOXO




Oh hey guys! It's me again! As Heidi mentioned she's giving away three copies of her book (which is in a vein a la Jodi Picoult) to all of you. So if you'd like a copy just comment here. And if you have any questions at all for Heidi, post those in the comment section as well and she'll be more than happy to answer them.

I'll talk to you all on Monday!


73 comments:

  1. Thanks so much for sharing Heidi's story, Lauren! This information is vital for many parents (and future parents)!

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  2. I would love to read her book. What a great Mama.

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  3. I would love a copy! As a mom, any time a child is in pain it is a tough one, I have a cousin who has Fibrodysplasia ossificans progressiva (FOP) which in essence means that her muscles calcify and turn to bone...there is only one doctor, Dr. Kaplan in PA, that treats this disorder so I know what it means to raise money for a disease that is so rare and affects so few....congrats for not giving up Heidi and for being one heck of a mom!!!!

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  4. Thank you for telling us and getting the word out, Heidi! And, thanks Lauren for letting her use your blog! :P I totally want a copy but I also would like to donate if I do win one because that's only fair as at least a portion of those books go towards the charity. :)

    Also, I love It's a Wonderful Life and am trying to convince my husband to buy it when he gets paid tomorrow. :D

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  5. Megan M.12/06/2012

    What an incredible story! I would love to read the novel.

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  6. Thanks for sharing. I'm a fan of Jodie Picoult and LOVE to read (seriously, it's a problem) so I look forward to it! I don't want one of the give away copies though, I'll buy one so that it will contribute to The Infantile Scoliosis Outreach Program and Shriners Hospitals.

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  7. My TBR list is crazy long, but you've piqued my interest. I enjoy Jodi Picoult on occasion- add me to the contest, please.

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  8. Thank you for writing this! It's amazing the strength of a mothers love. I would love to read it and pass it on to others. Sounds like an amazing story.

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  9. Can't wait until it comes out for the kindle!

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  10. Nancy T.12/06/2012

    I'm in tears from reading this, what a story. I would love to read the novel.

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  11. I'm interested to see what you think about "Casual Vacancy" as I couldn't finish it. I went into it with an open mind that it wasn't Harry Potter, but I still couldn't get into it.

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  12. I'm hooked already and I'd love too read the book! !

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  13. Wow, I'd never heard of IS. I had 6-degree scoliosis as an adolescent, and was checked regularly to track if I needed a brace. My mom and doctor both agreed the permanent metal rod option wasn't necessary, thankfully.
    I still get some lumbar pain on long car rides, which has worsened since I broke my tailbone a few years ago, but otherwise I'm great. Yoga helps my muscles immensely as well.
    I am so glad you found a more gentle course of treatment for Bexon, and that you've dedicated so much time and energy into being sure the information is out there for other families dealing with this disease. What a wonderfully small world we live in that you were able to find and connect with Heather and Dr. Mehta- I am so thankful for that, for you!

    I'll get my hands on the book regardless of winning it here, but if I did, I'd read it then donate it to my library so others can be aware as well- the more in the know, the better!!

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  14. I would love to win one of the books!!

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  15. what a great mom!

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  16. Heather12/06/2012

    Heidi is a bonafide ROCK STAR! Not only is she an AMAZING and dedicated Mom, she's also done her own "Red Dress" share and overcome some pretty daunting personal issues. Congrats to her for her new book, and Bex for being so cute! ;)

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  17. Bama Sharon12/06/2012

    I would love a copy but if not possible will get it on kindle. What an amazing story and what dedication and determination of the parents.!!

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  18. I would LOVE to have a copy of this book - just reading Heidi's post has given me some hope at a time when it is greatly needed. I am 16 weeks pregnant with my first child and just learned that the baby has an omphalocele (an abdominal hernia where the developing organs are outside the abdominal cavity). We are already very lucky in that it does not appear that she has any of the other conditions commonly associated with an omphalocele (cleft palate, Down's Syndrome, Trisomy 18 or 13, etc.), but the road ahead is still looking pretty scary and will almost certainly involve surgery right after birth. Heidi's strength and perseverance (along with her son's) are something I will keep in mind in the coming months. Sorry to overshare . . . but lately a little "anonymous" sharing has been good for my soul.

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  19. What a moving story, I am so glad she found Heather. I would love to read the book and if I don't win, I will be buying my own copy. In fact I may still buy a copy just to help raise funds...I can always give it as a gift, luckily I come from a family of readers!

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  20. So incredible!! I'm glad for stories like these in case my children ever need this care I know where to look. thank you for sharing!

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  21. I remember reading a bit about Heidi's story on her website and just weeping. I am so glad that you shared this, Lauren. And Heidi - what others have said is true, you are an awesome mama to have worked so hard to advocate and fight for your boy.

    Don't enter me in the contest. Give my entry (or whatever) to Val who posted before me... I'll buy one to support the cause.

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  22. I would love to read her book, she sounds amazing!

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  23. Veronica12/06/2012

    I read some of her blog awhile back, what an amazing woman!

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  24. Sounds like a great book by an amazing woman!

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  25. I would love to win a copy of this book. My cousin had spinal surgery a couple years back because if how severely crooked her spine was. Heidi, you're a super mom! More power to you :)

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  26. what an AMAZING mom. I'd love to read this book but we're on a spending freeze so I'll have to win it

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  27. I would love to read this

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  28. I am so moved, it's hard to read your comments without crying- thank you so much to all of you and especially to Lauren, it means more to me that people are just becoming aware of this condition than anything. Most curves in babies self correct, but when they don't, you must act fast and get to the right treatment before time runs out. I'm crying now, it's true that you can experience love through the Internet.

    Meg: Thank you for telling me about FOP, I'm sending love and healing thoughts and energy (and prayers if you don't mind) to your cousin, it's so important to raise awareness for these conditions because awareness is the first step to proper support, diagnosis and finding a cure.

    Val: If I'm not mistaken, I know an amazing mom named Jane whose daughter had the same condition as your baby. If you'd like, I can contact her about connecting you, I know Jane because her daughter also has congenital scoliosis and wore casts for that- but I don't want to worry you, that is probably a very rare combination and there are lots of other conditions that can occur with scoliosis that my son doesn't have, so it definitely doesn't mean there will be any connection. Jane knows a lot about the medical stuff and her daughter had that surgery successfully after she was born. If you'd like to, feel free to email me at girltomom@gmail.com or friend me on Facebook under Heidi Ferrer, I'm FB friends with Jane. ((Hugs)) to you, you are brave, you are already an amazing mother.

    No one has to give away their copies by the way, I will gladly donate the same amount myself this holiday season, I want you to keep them. Love, Heidi

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    1. Anonymous12/06/2012

      Heidi - I would love to be connected to your friend (I just sent you a FB friend request). Thank you for the offer and your very kind words. ((Hugs)) right back to you. ~~Val

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    2. Thank you Heidi, I appreciate it and Sophia will too....Hugs to you as well and stay tough, its hard being a mom at times but it makes us better people!!!!

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  29. I would love to read it.

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  30. I would love to read this as well! I was thinking as she was describing her book that it sounds like the works of Jodi Picoult, then I felt smart when Lauren said so too at the end :)
    I'm inspired by this mom's strength to do whatever it took to get her baby better.

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  32. I would love to read your novel and pass it on to others. There is no such strength as mother's. Ada

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  33. I would love to read it ~ Good for this enterprising Mama! Thanks for sharing her story.

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  34. Wow, what a challenging journey! I would love to read this book.

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  35. YES PLEASE. I am also heading over to Heidi's blog because this story is miraculous and I want to read more from her! Living in a bubble I didn't fathom the health issues children can go through! If you don't give me a copy I will have to buy one and I KNOW my besty will want a copy. If it wasn't for Shriners (spelling) she wouldn't be the person she is today with her Cerebral Palsy.

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  36. I once spent a ridiculously long time reading all Heidi's blog archives (almost too embarrassed to admit it may have been somewhere around 12 hours....) and I found her to be an amazing woman and mom! What a fighter and what an important message.

    -Jen
    jenknee1976@hotmail.com

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  37. Sounds like a wonderful book! What a brave and strong mama and little boy too!

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  38. I have been reading Heidi's blog for a long time and absolutely adore her. Her candor and honesty is refreshing and beautiful and I look forward to her daily words in my inbox. If my number gets drawn, please throw it back in the pool. I am going to buy the book regardless and would love to see someone else be able to enjoy it!

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  39. Heidi is such an amazing, strong woman. I would love to buy her book to help other children like her little boy. He is adorable :]

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  40. I've been following your blog as well as Heidi's for a while now. I'd love to win a copy, but of course I'll also be buying it.

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  41. This sounds amazing! I work in an indie bookshop in Ohio, what are the chances we could have you for a signing??

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    1. Oh Emelie, I wish! Thank you for asking. I don't have a marketing or tour budget now, but maybe someday in the future!

      ~ Heidi

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  42. I'd love a copy of the book. I also have scoliosis, though a more normal non life threatening kind. Still, I'm in pain every day. My heart goes out to the little boy. At least I was a teenager when this all started for me.

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    1. I'm so sorry that you have pain from scoliosis, pain sucks! ((Hugs)) to you.

      ~ Heidi

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  43. Wow! What a story!

    I am not yet a mother, but it is in the plans, however, there are so many things that could go wrong, so many health scares, it's really quite daunting. It's hard enough to be a parent, without having to worry about health and special needs. All good moms are my heroes, but there are also moms who are super heroes, and I'd classify Heidi as one of them!

    My childhood friend had severe Scoliosis, and it was like there was a double curve. Her spine looked like an 'S', but it wasn't until she finished her pubescent growth spurt that doctors agreed it was time to do something. At 14, my friend had rods surgically implanted into her back, with bone pieces from her hip harvested to graft and hold everything together. She has been living with the fear of being bumped into, falling, etc. for fear of the rods breaking,since, and at 31, I know this has limited her life.

    The amazing resource of the internet never ceases to astound me. I'm so glad that Heidi dug deep to get the information she could for this life-changing procedure. This book is such a gift- it's so amazing that there are alternative options out there, and that you can share your story to make it known!

    I'd love to enter the draw, but either way, I look forward to hearing when the epub is ready! :)

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    1. Patti,

      The good news is that most babies and kids are totally healthy, so don't worry! The odds are in the favor of a healthy child. It sounds like your friend had final fusion as a teenager, I know people who have had no long term pain from that (after healing) and I also know a young mother who has terrible pain from it- she developed what she calls Flatback Syndrome. The difference with the surgery my son would've had is that he would have had growing rods inserted in his spine as early as age 3, that could only be lengthened 5 or 6 times, then he would have been full height by age 7-10 with final fusion done then. In other words, he would be deformed and possibly without room for his vital organs to grow properly, lung problems, etc, and pain for life. I know you are in no way comparing, I just thought maybe some people would like to have the info. Thank you so much for your comment, scoliosis as an adolescent also really blows because of the psychological and social aspects, it's hard enough being a teenager! XOXO- Heidi

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    2. Hi Heidi! Thanks for the extra information. Wow. I can't even imagine a child having to go through all of that with the rods, and being fully grown at 7- 10? That would be so unfortunate - especially when, as you've found, there are other options. Thanks for sharing!

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  44. You're such a strong woman and dedicated mother! I'd love to win a copy to give to my Aunt, but I'll be buying one for myself today!

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  45. Wow...just wow. Would love a copy.

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  46. I am buying a copy for my Kindle as soon as it's available, but would love to win a copy to give to a friend. Thanks!

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  47. Can I just say, all the women on here are wonderful to want to share! No one seems to be keeping this book to themselves. That's amazing and touching. Very caring gals! Love it :)

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  48. Anonymous12/07/2012

    My son has IS and he's been in a total of 13 casts. He is currently 7 yrs old and wears a brace. What a journey we have been on. When we did the casting we traveled 600 miles one way to Denver, CO for our treatment every 8 weeks. That was our life for 2 years straight. His numbers aren't great now. We started the casting when he was two years old. If we would have known about the treatment earlier I can only imagine what his results would be like today. We just happened to stumble on ISOP's website after numberous hours of research on the internet after being told our only hope was surgery.

    I look forward to reading the book and relating to your story.

    Belinda
    belindarmurray@yahoo.com

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    1. Oh Belinda, 13 casts- you have been through so much. I so get it, I think I went a little bit crazy doing 10 casts. The medical trips are so emotional and then two or three months later you have to turn around and go through it all again. I just want to commend you on being a fantastic mother, a lot of parents give up. You are going to the ends of the earth for your child and doing your very best, that's all we can ever do. I too wish we had started casting earlier, it's possible we would've had only 3 or 4 casts instead of 10, nearly 4 years of casts and braces so far. Thank God for ISOP and Heather! ((Hugs)) and love across the Internet to you and your family. ~ Heidi

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  49. I'm so glad to hear that you were able to find a much better way to treat you son than what the dr.s were suggesting. I look forward to getting a chance to read your book.

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  50. Anonymous12/07/2012

    Hi Heidi
    Your story is almost identical to ours however we are just getting started. Our son Luke was born with EA/TEF which was repaired one day after he was born. He was also born with a hemivertebrae T4 which the doctors weren't too concerned about - he had a spine MRI and ultrasound done which otherwise was 'clean'. However due to this vertebrae we decided to monitor his spine and to get it checked every 2-3 months. We would go to the local Children's hospital - Orthopedics - to get an x-ray and consultation done. At around 5 months of age a lower curve suddenly showed up between T1 and T8. It progressed and fast forward to last week it was measured at Shriner's in SLC at about 69 degrees at 19 months (almost 20) of age. He got his first cast on last week and we know that we have a long road a head of us. Unfortunately we might not get to 0 degrees as his curve is to the right (more difficult to treat we are told) and because of the 'wildcard' - the hemivertebrae. Nevertheless we do feel very fortunate that we are able to provide the best care for Luke through Shriner's in SLC. Thanks to Heather!

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    1. I'm so sorry that you are going through this, but I must say I am so happy for you that you are being treated in SLC at Shriners! Your child could not be in better hands. Your numbers are basically identical to ours, although I know each child is unique, you can have a lot of hope. Our son has a Syrinx cyst which also could've made his cure more difficult. My best advice is to stay the course even if you get "stuck" in the middle of casting with little change in numbers for 3 or even 5 casts- that happened to us and then the miracle happened. Slow and steady wins the race! We couldn't be happier that we didn't give up too early. Love, Heidi

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  51. As soon as the book is available for the Kindle, I'll be downloading it!

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  52. The books sounds great. I can't wait to read it.

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  53. Anonymous12/07/2012

    Congratulations Heidi We also travel to Shriners in Utah for treatment for infantile scoliosis but from AUstralia. We found Dr Mehta's treatment too late as my daughter was three at the time. She had casts for 14 months then braces since then. She is now almost 12. We are so grateful to the Shriners for her treatment and to Heather for bringing casting to the world particularly when it came to late to help her own daughter. Heather has changed so many children's lives. She met a lot of opposition in the early days and never gave up.Congraatulations on your book Heidi and for your determination to share your story and get the message out there. Bexon's before and after xrays are inspirational. Cheers Bert and Bridget

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    1. From Australia- wow, incredible! I know, Heather's story is astounding, she deserves a book of her own and every charity and hero award out there. If she had not continued to fight for other children even after it was too late for Olivia (her daughter)to be cured by casting, we would not have had this miracle as an option. Heather is the definition of courage and selfless love. I'm so glad your daughter is with Jacques, he is a doctor among doctors and a man among men. You sound like an amazing mom. Love, Heidi

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  54. Sounds like it will be a good read, I'll add it to my Amazon wishlist to download for Kindle as I just got a gift card today for my birthday.

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  55. Thank you so much, and I will be giving away more copies on my blog for anyone who doesn't win- the best thing is word of mouth to spread awareness about Progressive Infantile Scoliosis and the cure of Mehta//EDF casting- if you have a Pediatrician, it would be awesome if you mention that you heard about it at an appointment, it should be on the Well Baby Checklist and it's not. Also, if you see any baby or young child with a curve, or with what looks like a bulge on one side near their ribs (a rib hump), etc., just remember the key is to act fast, under age 2! You may save a life. XOXO

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  56. Thank you, Heidi, for sharing you incredible story. I would love to win a copy of your book! Your strength and perseverance is inspiring. If I don't win, I'll def buy it for my Nook :)

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  57. I would love to win this. I think it's amazing that you're sharing your experience with IS through this novel.

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  58. That's incredible! I'm always amazed at people who can utilize their creative energy during life's worst trials. Congrats to you and best wishes for your son.

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  59. Wow! I'd love to get a copy of the book from you! My heart is breaking for all of those families that are not aware of this non-surgical cure. So glad to hear how things have turned out for your little guy!

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  60. Great Story! I would love to read the book.

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  61. I would love a copy, what an amazing journey!

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  62. Lovely. And if I win a copy I promise to read it and then give it away.

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  63. What a painful journey with a hopeful end. My mother has severe scoliosis. I hope this book and this cure will reach many, many families in need.

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  64. Hey guys, I'm giving away three additional copies on my blog today also- if anyone would like to enter that one for two chances to win, you totally can! (Girl to Mom.com) (And the Kindle version is available now at $5.99.)Thank you again so much, Lauren! Happy Anniversary!

    XOXO- Heidi

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