Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Joscelyn’s Story in Today’s Paper

on July 7, 2012

Just a quick post today to let you know that we’re eagerly awaiting the removal of Joss’ breathing tube later today.

I will finally get to hold her!

Overall, she’s doing great! The nurses changed her bandage for the first time today and her incision looks very good! They were able to keep quite a bit of her hair and Dr. B did a wavy line incision, which plastic surgeons told him is hidden by the hair better, especially when the hair is wet. She is still under sedation but only lightly and is showing a definite desire to roll over, pull out her breathing tube, etc. She didn’t like having her head messed with so the nurse jokingly referred to her a “hornet”!

That’s our little warrior princess! πŸ™‚

We also saw some definite movement in her right wrist which is a great sign!

On a more (somewhat) concerning note, Joscelyn had a short seizure last night that lasted less than a minute. We knew that this was a possibility and Dr. B told us that he’s not concerned if they happen in the first few days after surgery as her brain is still healing. This does not mean that the surgery wasn’t successful. 75%-90% of hemispherectomy patients experience complete elimination of their seizures or, at the very least, a great reduction in the number and severity of their seizures. Obviously, our hope is that she will be completely seizure-free and not need to go back on any medication but only time will tell.

Her story was featured on the front page of the Orlando Sentinel today. You can read the online version here: News Story

You can also view the accompanying photo gallery here: Photo Gallery

As a side note, one of the first public comments on the story this morning (which has subsequently been removed) was from a callous reader who had this to say, “If this were Roman times, that baby would be discarded on the side of a hill and left for the wolves to eat. But instead, doctors suggest “removing half of a brain”. Not sure which option is better.”

Nice, huh?

We know that we will face some ignorance and hate-filled comments like these as the months and years progress but we will do so with an even greater amount of love and support from our friends, family and all of YOU! This comment didn’t hurt me but it did make me even more appreciative of those of you who are standing by our side and lifting us up on this journey. Thank you!

In closing, here’s the latest picture of our little warrior princess holding the hemi baby I made for her. I removed all of its hair and drew a hemispherectomy scar on its head so Joscelyn would have a baby that looks just like her. I love that the nurses have her all decked out in pink bandages! They also found the only pink sheet in the hospital because they said Joss was special. All of the other nurses are jealous! πŸ™‚

Please keep those good thoughts and prayers for our little fighter flowing! She is making excellent progress but we have a long journey ahead!

Thank you!

Update!! Dr. Lee just came in and said that the episode she had last night was NOT a seizure! He is going to put her back on her anti-seizure meds for 6 months until her brain fully heals as a precaution but if she is seizure-free at that point, he will wean her off of them. This is GREAT news!!


28 responses to “Joscelyn’s Story in Today’s Paper

  1. Cyndi Yanke says:

    Shame on those people. Some people don’t think before they type. I love when someone asks me about my son and I get to the hemi part they just stare blankly at me thinking are you serious? My response is he is always he has more heart, compation, and personality then kids with all their brain! It doesn’t take a full brain to realize people can be cruel.
    Hope they can take the breathing tube out soon so you can hold your little girl.

  2. Andrea says:

    Thanks for your latest post, Jennifer. I always eagerly await the news and your thoughts. Sorry for the insensitivity of others … but they don’t know you or Joscelyn. She is INFINITELY worth every moment and every penny spent to make her healthy and enable her to fulfill God’s plan for her life. Grace and peace to you, my friend!

  3. Suz says:

    This morning after reading your story, I shared it with my husband and son. My son ( age 6 ) reached out to take our hands for a ‘family prayer’.

    I was so happy to read your update this afternoon and show him her most recent picture πŸ™‚ We’ll continue to pray hard and follow your journey.

    • How beautiful, Suz! The faith of a child is a powerful force indeed! Please let him know how much we appreciate his prayers and that they ARE making a difference! Much love to you and your sweet family!

  4. Nita says:

    Thank God all is going well!! She us beautiful. God gave us talented doctor’s and they are using their talents to help people, which is what God wants. I am continuing to pray for Joscelyn and all her family. God has special plans for Ms. Joscelyn!

  5. Pam says:

    I can’t believe that people in this day and age are still so calloused and ignorant. Obviously, this was a difficult decision and situation for you to endure, but God is leading you each step of the way, and I firmly believe that your faith will be rewarded. Your beautiful child is going to enlighten the eyes of many ignorant fools out there some day. God has a plan and a purpose for her life…and it is a good plan, not an evil plan. He has brought you this far to be a living testimony to others of His power to heal and continue to perform miracles in this day and age. Keep looking up!!!! Don’t let others get you down. They obviously don’t know God.

  6. Norma Ruttan says:

    What a relief this big hurdle is conquered. What kind of person has the need to write such a hurtful thing? I can only suppose that this being has no one for whom to care or who cares for her/him. I was so repelled that I didn’t pay attention to whether there was a signature. Prayers will continue here.
    But I hope that the surgeons are aware of what a great talent each has.

  7. SO, so glad to hear all this great news!! But so sorry that people have (and express) such morbid and horrid thoughts. You are all on our minds and hearts continually. May God continue to heal, bless and provide!!

  8. Kim Truelove says:

    I just read your whole story and am so happy that the surgery went well. I can not imagine what it would be like to go through this. I admire your strength and courage though this trying situation. Our family will pray for you all.

    I am a photographer located in Winter Garden, FL and would be happy to do a complimentary session for you and your family when she makes it out of the hospital if you are interested. I hope it is ok that I noted that here as I could not find a way to send you a private message. My email is info@kimtruelovephotography.

    I hope you all stay strong, there are a lot of people supporting you all!

  9. June Silva says:

    Sadly, there are people who make horrible comments. Is it for attention? I will not even give them a minute of my time, except to pray that they will find real peace! What is most important is that your sweet little girl is doing so well!!! Of course she is, there are so many praying for her all over the world, and God does have a special plan for her. I get so excited when I read the progress she is making!!! Blessings to all of you and thank you for sharing the pictures and all the details. She is going to be just fine. Hopefully, you are all getting some much needed rest!!!!
    With Love,

    • Thank you so much for your love and support, June! You are absolutely right! The important thing to focus on is the health and happiness of our little girl. She has a very bright future ahead of her! Hugs!

  10. Annette says:

    As I continue to pray for your family, I will also pray for the person who was so inconsiderate. God Bless you all! You all are continually in my thoughts and prayers – may the “Positive Power of Jesus Christ” take over.

  11. Andrea C. says:

    Hi, I just found your blog. What a touching story. I will be praying for you and your family. I live in the Altamonte area; if there is anything that I can do for you, pleace let me know…my email address is: Lots of Hugs and prayers to you and your family!!

  12. Wendy Hoth says:

    We are so blessed to be living in such a time as this! Years ago this procedure wouldn’t have been possible, but God allowed your precious one to be born at a time when medical advancements can offer her hope, a life free of seizures and pain, and the ability to be an inspiration to so many others. Our prayers and thoughts are with you all. I praise God with you for how well everything has gone and will continue to go over the upcoming months and years. He is in control, and we will continue to put our faith in Him!

    Blessings and Love Jennifer! πŸ™‚

    P.S. – I’m looking forward to reading your first book!!!

    • Thank you, Sweet friend! We are trying to keep our focus on how far she’s come rather than how far she has yet to go but it’s not always easy! I appreciate your words of encouragement so much! Big hugs to your and your precious family!

  13. Sandra Junkins Carpenter says:

    I will be praying for a speedy recovery for your little angel Joss. Try to ignore ignorant people as with the unemployment rate so high people have nothing else to do and they have lost hope and are not looking to our God for comfort and answers therefore they will not have any. God Bless you and your family.

  14. Cynthia Greenly says:

    Dear Jen and Michael:

    I just read the article in the Orlando Sentinel since I am away. I can not believe the uncompassionate and ignorance of some people. I am praying for that person. I am praying God open up their heart to be bigger and warmer.

    However there will always be ignorant, cold and inconsiderate people in this world. We have to rise above them. Will Joss be a ballerina? Most probably not because of balance but then again, who knows what the good Lord has in store for her???? She is young enough her good brain can compensate for the bad brain.

    I actually met an elderly lady (yes, older than me!!!! :-), who had to have part of her brain removed and she is fine. Until she told me, I would never have known. This was brought up in casual conversation and she did not even know I knew you and what Joss was going through this. I think it was God’s way of telling me everything is going to be alright.

    I can only pray the Lord does not allow this person to have children or even a pet with a comment like that. It hurts me for you to have to read some insensitive comment from an ignorant person. Just remember all those who are behind you and love you. These are the people who will always rally behind you and pray for you and especially Joss.

    Love ya,

    • Thanks, Cyn! I prayed for the gentleman who made that comment, too. It won’t be the last insensitive comment we hear but the amazing amount of positive support we’re receiving from loving friends like you will always outweigh the occasional mean comment! Thank you so much for your faithful friendship! Hugs!

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