Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

One Year Seizure Free!

on May 14, 2014

 

 

 

I can’t believe how long it’s been since I last updated Joscelyn’s blog! I suppose I could blame the lapse on the fact that we’re just so busy with her various therapies (which is true) but really I think it’s more a testament to the fact that we’ve settled into our “new normal”. Life as a special needs parent is certainly still challenging (and requires a lot of coffee) but I don’t find myself struggling with the reality of it like I did when Joss was first diagnosed.

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We’ve also been blissfully free of any medical drama for some time now, which has thankfully provided me with less blog fodder. (I don’t watch “ER” or any other hospital dramas on TV, thank you. Been there, done that, got the t-shirt.) 😉

So what HAVE we been doing for the last few months? I could tell you, but as our friends at 1, 000 Words Gallery say, “A picture is worth 1, 000 words”, so I’ll show you instead. 🙂

February 27, 2014

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Doesn’t she look fantastic?

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Seriously,

that’s one happy kid right there!

 

 

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Florida Hospital for Children made a beautiful video summarizing Joscelyn’s journey to this point. We hope you’ll watch it and share it with anyone you know who might need a little encouragement, especially if they’re curious about the possibilities of epilepsy surgery.

Yes, that’s me, grayer and wiser and proud of  every one of those silver strands I’ve earned so far on this journey!

I’d like to tell you that I’ll be better about updating Joss’ blog in the future but I can’t promise anything.

After all, I’ve got a very active little girl to chase after.  😉

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15 responses to “One Year Seizure Free!

  1. Andrea M. says:

    Oh my goodness, Jennifer, she is so beautiful, and I am SO HAPPY for your family! God is just amazingly good, and Joscelyn is living proof of that fact every day. May He continue to bless her as she blossoms and grows into the young lady He has designed her to be. And may you continue to feel His strength and grace each and every day as you walk with Jesus each step of the way. Much love to all of you!!

  2. Steve says:

    You were so right about the tissues. It was so amazing to see how far Joscelyn has come. With the help of her support team and with all the love and support you ,Michael and the boys give to her the sky is the limit.I can’t begin to imagine how hard this must have been in the beginning but you have to be as overjoyed as all of us are with her progress. All of you will be forever in my prayer.

  3. giazzpet says:

    YAY YAY YAY! Go Joss and go Jenn!!! So very proud of you and your family! What a great ending! Hugs and virtual kisses from me!

  4. Mariellen Barr in PA says:

    Thanks for the update, Jennifer! Little Joscelyn looks amazing! I was so happy to see her standing alone and then walking in the video?!! So exciting for you, praising our wonderful Father!

  5. PRAISE the LORD!!! Tears come to my eyes when I see the goodness of God manifested in that beautiful Jos! We have an awesome God Who is still in the miracle business! Your journey to this point has been unbelievable; your faith has been equal to the test. God bless you all, grow you together as a family and by His grace and mercy give you MANY more 1,000 Days to celebrate God’s hand at work in Jos and in you. Thank you so much for sharing this milestone and the glorious pictures which wear witness of God’s grace.

  6. Beverly Lawler says:

    She is adorable and has come a long way! My best to you and your family.

  7. She looks wonderful, so happy for all of you. God has blessed you! Enjoy, have lots of fun together

  8. Nonnie says:

    When I saw your name in my list of emails, I thought, “Wow, I wonder if I’ve missed emails from her.” It’s great that not hearing from you was not my slight of seeing emails from you and that you have only good news to share with us. Remember to take card of yourself as well as your family.
    Prayerfully,
    Nonnie

  9. kim says:

    Oh. My. Wow. What a beautiful, joyful little girl. Sending thankful prayers to God above for the healing, the strength, and the joy that are in the life of you and your family. May peace…. God’s peace…..physical, emotional, spiritual peace embrace you as you continue this journey. Please continue to keep us updated on Joss and her milestones. We’ve prayed during the dark times (and will continue to do so); but want to add the prayers of thanksgiving!!!
    Wow!!

  10. Diane W. Checkley says:

    Hi…I don’t know if this site is still active, but I’m taking the chance that it is…I’m a social worker working with an early intervention program in NJ…I’m currently working with a family whose 8 month old son had a hemispherectomy soon after birth…we are in the process of finding resources for him…one of their priorities is purchasing a hyperbaric chamber…I’m researching possibilities and would like your feedback…have you had any experience with this?…any input would be greatly appreciated…thank you.

    • Hi Diane,
      I apologize for the delay in responding. We have not tried a hyperbaric chamber. If I can answer any other questions for you, please feel free to email me at ravynprincess1(at)gmail(dot)com

  11. Claire Audsley says:

    Wow I have just found this blog, my 10 month daughter has just been diagnosed with the same (left side) condition. We are waiting for the date of her operation. This really has given me hope. beautiful little girl. I will be following xx

  12. Allie Terrazas says:

    Hello! My name is Allie, and I’m expecting my first baby in October. Our baby boy was recently diagnosed with hemimegalencephaly based on ultrasound images and MRI scans. Reading about your journey with Jocelyn has been such a strength and help to us in preparing our for our own adventure with baby Leo. I was wondering if you would be open to sharing your e-mail address and possibly answering some questions? If not, that’s totally fine, I just thought I would ask. We’re trying to network as much as possible with families who may be able to give us advice. Either way, thank you for sharing your story! My e-mail address is schulteam5@gmail.com

    • Hi Allie! I’m sorry for the delay in replying. Congratulations on your new baby boy! Please feel free to email me at ravynprincess1(at)gmail(dot)com with any questions you might have. I’d be happy to help in any way I can!

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