May 2013 Moms

Spina Bifida Update

Hi all- I posted this on facebook yesterday

 

My sweet little boy, Logan will be born in May. He has Spina Bifida (SB). I am sharing this not to get sympathy or pity. But because I am proud of my little guy. I want to teach people about Spina Bifida. I want him to be proud of who he is, to know he is loved and cherished and to know that his family will do anything for him. It has been a difficult past three weeks. Little Logan already has so much support and love and so do I. I have started a blog for Logan as inspired by so many other wonderful blogs about some precious kiddos with SB. If you would like to follow our journey just let me know and I would be happy to share that with you.       My blog is https://littleloganjames.blogspot.com/   Hope everyone is doing well :)
Image and video hosting by TinyPic Lilypie Third Birthday tickers Lilypie Pregnancy tickers Expecting Logan James (Spina Bifida) May 2013. Follow our journey: http://littleloganjames.blogspot.com/

Re: Spina Bifida Update

  • {{hugs}} and good luck to you and Logan.
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  • What a great idea. Baby Logan will definitely know he's loved :) 
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  • Aw, I'm so sorry... I'll keep you both in my thoughts and prayers. Thanks for sharing the blog, I'll be sure to follow.
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  • Thank you for sharing the blog. You are so strong and little Logan will be loved and prayed for by many!
  • logan is a lucky boy to have such a strong family!
  • I'll definitely check out your blog!
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  • I will definitely be following Logan's journey! After you announced that Logan will have spina bifida I started to read blogs of other SB mom's/kids. They were absolutely inspiring and I am glad you decided to start one with your own family's story.

    Thanks for updating us and I have thought about you and Logan often since your last one.

     

    [EDIT: P.S. The blog looks great!]

  • Love the blog! What a great idea. Hugs to you!
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  • Wow, amazing blog and I wish you and your family a lot of luck in the weeks to come.  You will be in my thoughts.
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  • I will be praying for you and Logan. You are so strong and proof that ending the pregnancy is not the only way to go. I am so glad to see someone being so positive and upbeat about her baby's LIFE. ((hugs))

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  • This is so inspiring, and you are very strong. I hope you got a wonderful response on FB and know how many people, both IRL and here on TB, care about you. ((HUGS))
    BFP #1 10/6/11 | EDD 6/15/12 | MMC 11/7/11 @ 8w3d | D&C 11/14/11

    BFP #2 8/22/12 | EDD 5/5/13 | DS1 born 5/9/13

    BFP #3 4/25/15 | EDD 1/7/16 | MMC 7/2/15 @ 13w1d | D&E 7/8/15

    BFP #4 12/9/15 | EDD 8/22/16 | DS2 born 5/18/16 at 26w2d

    Just keep swimming.
  • Praying for you and Logan.
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  • I am going to read your blog right now.

     

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  • What a wonderful blog. You are welcoming Logan into such a strong and supportive family, he's just as lucky to have you! 
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  • You have a great attitude! Your little guy is very lucky to have you and your family. 
  • I love the blog... I will be continuing to keep you and your family in my thoughts and prayers
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  • Thank you for sharing. Your little boy seems so loved. Good luck and prayers for a safe delivery.
  • Wishing you all the best on your journey with Logan.  I just read your most recent blog post and it sounds like you have a good plan after Logan is born.  

    Please remember you are his biggest advocate and question everything and make sure you completely understand everything doctors want to do once he is here.  

    A great resource I've found is the MOMs of miracles group on Facebook.  Feel free to PM me with any hospital questions (over the past 18 months we've been there for a total of 4 months).   

  • Your blog is wonderful and Logan is incredibly lucky to have such an amazing mom.
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  • Wow, you are an amazing and strong person. I will keep you and little Logan in my thoughts and prayers. Thank you for sharing.
    TTC since 10/1/10 BFP 1/14/11 MC @ 6w 3d 1/17/11 2 Rounds Clomid 50mg + ovidrel trigger=BFN SA=Normal HSG= tubes clear July 2012 gonal-f and +ovidrel trigger + IUI= BFN August 2012 gonal-f + ovidrel trigger + IUI= BFP!! Beta 8/24 12dpo 166!! Beta#2 8/28 16dpo 942!!! EDD 5/4/13 9/10-First US-TWINS!! 2 beautiful little HB's, 1/3/13 said good-bye to our little boy. Lilypie Angel and Memorial tickers image Baby Birthday Ticker Ticker
  • Logan is already so very loved! Thank you for sharing. I am so glad to hear you have incredible support surrounding you and your family. 
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    EDD 1/31/13, MC May 17. EDD 3/31/13, MC July 26. I miss you so much already my angel loves

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  • I just visited your blog and read it. Beautiful. Logan sounds like he is loved very much. Best of luck to him and your family.
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    Anxiously awaiting baby #1! Baby BOY Due: May 30, 2013! Lilypie Maternity tickers

  • My cousin has severe SB (He's 29 now) and let me tell you, he is tough! While he doesn't have a normal gait he has more friends than most people could dream. And not the "I pity this guy so I'll be his friend" type I'm talking about the "genuine people who see through disabilities deep down to who people really are" type and my cousin is an amazing guy. He travels around the world, he just finished his Master's and is planning to get his Doctorate soon. He lives on his own unassisted and has a pretty sweet bachelor pad. SB is not the end it is only the beginning and I just know you and little Logan have a long and beautiful life ahead of you.

    All my best wishes that everything will go as smoothly as possible once he is here. I will be following your blog for sure. Logan is lucky to have such a wonderful Mommy. Many ((hugs)) Alicia!

    TTC since 3/4/2010
    Me: PCOS, DH: normal
    Started seeing RE 11/10/2011
    8/31/2012 = BFP!!
    First Ultrasound... TRIPLETS! EDD 5/11/13
    Baby w/ no HB @ 10w4d - We love you angel baby.
    Baby A & B doing great. A/S 12/10/12 - Healthy BOYS!
    Sawyer & Silas born at 33+6 on 3/29/13
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  • Just to hopefully give you a little extra encouragement, my cousin was born with Spina Bifida, they were told he would never walk, would be confined to a wheel chair, would never be able to feel anything below his waist.  He is 23 years old today and can walk using crutches, he's able to use the bathroom on his own (they told us he would have to use a catheter), and he's a smart and wonderful young man.

    Your Logan will have so much love and support and he will excel in anything he does.

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  • I think your attitude of acceptance is inspiring and it touches my heart to see your unconditional love for your son.  Thank you for sharing your courage.  I sincerely wish you and your family the very best, and I will definitely be following your blog! 
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  • Thank you for sharing your blog. I will definitely be following his story and keeping you both in my prayers.
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  • Love the idea of the blog! Thanks for sharing!
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  • Sending well wishes for you and Logan. I am glad you will be blogging about this journey.
  • Another new blog follower here.  Continued T&P for Logan and the whole family. 
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  • That's wonderful. So glad you are sharing your journey with others in a blog.
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  • Sharing Logan's story is a beautiful and meaningful thing to do.  I'm looking forward to hearing more positive stories of your little guy's journey with SB and your family's love and support for him.  Thanks for sharing your story!
    Kim 

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  • What an amazing mommy you are already. 

    Your boys are so lucky to have you in their lives! 

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  • Your strength and positivity are so inspiring! It warms my heart to see how you are already advocating and educating on behalf of your child. Sending prayers to you and Logan.



    **BFP 6/2/2015
    Toddler Boy 5/24/2013
  • I'm so sorry you're also dealing with this. I posted to an older thread of yours then found this one, which looks to be your most current one, so I'm reposting here in case it may be of help to you.

    We recently found out on January 10, 2013, (at 18wks) at our detailed scan at the U of IA Hospitals that our son has Myelomeningocele (open spina bifida). I don't know if anyone has mentioned to you, but there is now an option for Fetal Myelomeningocele Repair Surgery. The point of fetal repair being to prevent trauma to the exposed nerves (which causes the lack of functioning) before it happens. This trauma to the exposed nerves begins in utero.

    There are just a few hospitals in the USA that offer it so far (about 8 total). I see that you're in Council Bluffs, IA. I'm in SE Iowa. The closest hospitals to us that do it are Mayo Clinic in Rochester, MN; St. Louis Fetal Care Institute in St. Louis, MO; and Cincinnati Childrens in Cincinnati, Ohio. The surgery needs to take place between 19-26weeks, so things have to be processed quickly to see if you qualify and schedule the surgery. The process has moved rather rapidly yet smoothly so far for me. Everyone has been very helpful and personable - I'm not just a number to them. I'd be happy to answer any questions you may have including how to get things going and such. (I'm 20wks now.) I'm currently waiting to hear if I qualify for evaluation at St. Louis. The doctor actually called me back to talk with me on Sunday afternoon, which was amazing to me.

    I've posted about this on another site (TCOYF). I have more links listed there (including several hospitals and reports) as well as more details: https://www.tcoyf.com/forums/p/224050/1679199.aspx?d=1#1679199

    St. Louis Fetal Care Institute Fetal Myelomeningocele Repair Surgery- https://www.cardinalglennon.com/fetalcareinstitute/Pages/Lily%27sStory.aspx

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