Josie's Journey

06/06/2024

Yesterday we delivered 104 EEG care bags to Monroe Carell Jr. Children's Hospital at Vanderbilt in honor of Josie’s 10th birthday. They were extremely appreciative and grateful…we got the biggest hugs! I’m most excited for the recipients and the blessing it may be to them!

Thank you to each and EVERY person who helped contribute to this venture. Know that what you have done is going to make someone else’s day a little better and helpful!!

Today was her neurology appointment, we increased her VNS run time to see if that will help alleviate some the intense focal seizures she’s been having the last several months. We also discussed new medications if we chose to add one and doing some research on other medical procedures. Josie’s neurologist is great and always willing to help do what’s best for our girl!

09/02/2024

Yesterday, Josie was student of the day! ✏️💜

23/01/2024

sweet girl
ON THIS DAY AND EVERY DAY AHEAD, REMEMBER YOU ARE SPECIAL. REMEMBER THAT THE THINGS THAT MAKE YOU DIFFERENT FROM OTHERS IS WHAT MAKES YOU STAND OUT FROM THE CROWD, DON'T BLEND IN WHEN YOU WERE MEANT TO SHINE.
YOUR VOICE, YOUR MIND, YOUR HEART, YOUR
STORY, AND OH, YOUR DEAR DEAR SOUL . . . CREATED IN ONE.
PERFECT.
PACKAGE.
EVERYDAY YOU WILL FIND SOMETHING TO BE
GRATEFUL FOR, EVERYDAY WE ARE
grateful for you 💜

Happy 10th Birthday Josie Mae!! 🎉💜

21/01/2024

January 20th is International Day of Acceptance.

International Day of Acceptance is a day dedicated to the social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance.

14/01/2024

Helping others is not only a duty, but a privilege.

Next week we celebrate Josie turning 10! 💜🎉

We have been blessed many times the last ten years and it’s our desire, for Josie’s 10th Birthday, to give back to others in a place where we have spent SO much time. At this time, Josie has one BIG need, but we desire to extend our love to other families first. One doesn’t always know when they will end up in the Epilepsy Monitoring Unit at Monroe Carell Jr. Children's Hospital at Vanderbilt, some times it’s planned, but come June they will be welcomed by preparedness, kindness and love. This last emergency trip landed Josie there and we too were very much unprepared.

And this is where we need your help. No goal has been set but in my mind I was hoping to get 100 bags sent but I truly believe that we as a community can do even better than that. I would love to see that number x 10!

You can purchase items directly from the Amazon Wish List posted below, and the items will get mailed directly to Josie. You can also shop your local stores (find the best deals!!), you can contact me to pickup your items. Or if any business from Bulls Gap to Limestone would like to be a drop of location please reach out! Also…we are not limited to Greene County, so if you want to participate let me know!

*If you purchase snack items I do ask the following:
- they do NOT contain nuts
- they are individually wrapped snack size
-that they will be in date through the end of 2024
- think of items both adults and children would like (we will pack some for both, parent meals are no longer free)
- I only listed a few on the WishList as reference and we are not limited to just those.

*Some of the items listed are not on the Amazon Wishlist because we can purchase them elsewhere for better price and quality. Any monetary donations will go to purchasing the Shampoo, Conditioner and Coconut oils.

*Notepads: the ones specifically listed will be personalized as well.

All bags will include a letter from our family and why and why we are honoring Josie. I would also love if any teachers wanted to include positive affirmations on note cards from their students. We want each bag to be filled with encouragement!

Collections will end May 15th so we can prep and prepare all bags for delivery at her June 5th appointment.

I will update weekly as we go along. 💜

https://www.amazon.com/hz/wishlist/ls/36CTY9QPDJEP0?ref_=wl_share

22/08/2023

A friend is one who knows you & loves you just the same!

Sometimes the best therapy is having a friend. 💜 Josie is blessed to have so many friends encourage and motivate her at school. She is loved by so many and we are SO thankful the Lord placed each and everyone of them in her path. I truly believe a small portion of her purpose on this earth is to teach others to be accepting of peoples differences…what kids see and learn trickles down to parents and families and that can make this world a better place 🌎

09/08/2023

She’s coming for you 4th grade!! Excited and ready to be back at school!

20/06/2023

**edited** To clarify, the device is was only on a short time after surgery and then turned off. It will be turned on tomorrow, Tuesday.

We’ve had a wild and crazy last month and we forgot to share that Josie was having surgery to have the VNS implanted. For those that don’t know, VNS is Vagus Nerve Stimulator. A VNS is a device used to treat seizures when seizure drugs are not effective and surgery is not possible. VNS consists of a pacemaker-like generator that is implanted in the chest wall and is programmed by the physician to stimulate the vagus nerve in the neck.

She’s had a great recovery and we are back in Nashville for her follow up appointment with her neurosurgeon in the morning and she will get her device turned on.

Once it was implanted during surgery they turned it on to ensure it worked and for three days after surgery she didn’t have any seizures. We are hoping that with the VNS and the prior brain surgery she can finally gain the control that she has long deserved to have. Pray with us that this intervention is successful for the long term. 🙏🏻

We will always continue to update as we see results!

14/03/2023

We know lots of CP warriors who have plenty to contribute💚

23/01/2023

N.I.N.E

9 years of loving our sweet girl! She blesses us everyday and everyday we are thankful for her! Happy Birthday Josie Mae!!
🎉💜💜💜💜💜💜💜💜💜🎉

12/01/2023

On January 20th, the International Day of Acceptance encourages everyone to embrace those of all abilities. The day also supports those with disabilities to realize they are not living disabled. Instead, they are living.

Did you know that 15 percent of the world’s population has some form of disability? Up to 190 million people around the globe have a significant disability. In many places, they are often ostracized, live in poverty, and cannot get an education. In many instances, people with disabilities are seen for what they can’t do instead of what they can.
Thankfully, in some countries, this is changing. Society is recognizing the need to include those with all abilities. Society is also recognizing that those with disabilities have rights. Their voice matters. They have the power to make a difference in the world. Just look at this list of famous people who have gained acceptance and have become a powerful voice:
Musician Andrea Boccelli who is visually impaired
Actress Marlee Matlin who is deaf
Actor Daniel Radcliffe who has dyspraxia
Motivational speaker Nick Vujicic who was born without arms and legs
Comedian Josh Blue who has cerebral palsy
Dancer Sudha Chandran who has a prosthetic leg
Many other world-changers didn’t let their disability stop them. Some include Helen Keller, Ludwig van Beethoven, Stephen Hawking, Thomas Edison, and Rosa May Billinghurst.

Now is the time to fully embrace who you are. It’s time to celebrate abilities rather than disabilities, exceed the expectations that others have for you and that you have for yourself, and accept all people for who they are!

HOW TO OBSERVE
The day encourages those with disabilities to share their acceptance stories. Another way to celebrate this day is to display the International Symbol of Acceptance, the “wheelchair heart.”
To participate:
💙Learn ways to embrace and empower people of all abilities.
💙Teach your children to be inclusive of those who might be different than them.
💙Donate to an organization that protects the rights of those with disabilities.
💙If you have a disability, share how acceptance from others makes you feel.
💙Watch a movie, such as Crip Camp, or Including Samuel.
💙Spread awareness for this day on social media with .

INTERNATIONAL DAY OF ACCEPTANCE HISTORY
In 2007, Annie Hopkins and her brother Stevie created a company called 3E Love. Annie and her brother both had disabilities. The goal of 3E Love was to spread this message: “Embrace diversity. Educate your community. Empower each other. Love life.” She developed a wheelchair heart logo as an International symbol of acceptance. Annie passed away unexpectedly on January 20th, 2009. To honor her legacy and continue the message of 3E Love, her family and friends created the International Day of Acceptance. The first event was held on January 20th, 2010.

26/12/2022

Merry Christmas to all our friends!! ✝️🎄🎅🏼💜

22/12/2022

7 weeks!!! With only one very small, less than 20 second seizure last Thursday. A blessing we will forever be thankful for. Put a bow on that crown of her’s….her health is my favorite gift this year!!!

20/12/2022

01/12/2022

The last month has been a whirlwind. And in the midst of it all I neglected to update or share progress from Josie’s surgery on Nov. 2nd., and I will do a post(s) soon to recap her brain surgery journey. In the meantime, enjoy this HUGE praise!!!

4 weeks!!! Four amazing, almost entirely, seizure free weeks for Josie!! God is good….in the hard times, even the last 8 years of daily seizures…all the time!

Even in all this sickness, she has proven to us how amazingly well she has done since her brain surgery. So many inchstones to be thankful for!

02/11/2022

Happening tomorrow! Be sure to wear all the purple, pin on a purple ribbon, whatever you’ve got! Most importantly pray 🙏🏻. Pray for the neurosurgeon, anesthesiologist, nurses, and whomever else that is involved in Josie’s care tomorrow morning. Pray for the outcome we’ve waited eight and a half years to see. Pray for Josie’s health during recovery and healing. Pray for Logan and I. Pray for Asher and Gannon, who worry about their sister. Pray for Josie!

P.S. If you remember to get pictures drop them below and I’ll show her when she’s able. 💜💜

26/10/2022

This is my niece, Josie! Next week she will be having major surgery on her brain, a Corpus Callostomy. We are all so hopeful and elated that she was a candidate for this surgery; however, it comes with many risks…in which we are already praying against!

My brother and sister-in-law covet your prayers over Josie for the next few weeks.

I felt led to set up a meal train for them to lessen the stress and burden of trying to figure out what to feed their kiddos on top of taking care of Josie post op. There are multiple ways to help them during this time 👇🏼

You can sign up to provide a meal, in multiple ways- it’s all so appreciated!

Also, you can donate financially on this page as well; it would help with the burden of extra expenses for her surgery! Proceeds will be used to pay for the expenses of the trip and surgery.
Please read and share!!!!

This fundraiser was setup to help with meals and hotel/travel expenses for Josie’s upcoming surgery! Please know that every donation made or meal delivered is a blessing to them! This will help take a little weight off of their shoulder financially and day to day. I know they will be so thankful f...

11/10/2022

Surgery is three weeks away. I can’t imagine a month any better than November to be having such a procedure done. November is the time we share all things epilepsy and Lord willing we will get to share the next, and probably the most terrifying, chapter of Josie’s Journey. Because purple is the color of epilepsy awareness and our favorite we want to encourage you to wear purple on Nov. 2 for surgery day. A way to keep Josie in your thoughts and prayers and show support for so many others who battle epilepsy.

Josie’s surgery is scheduled for 8:30 am CST at Vanderbilt. Nothing would comfort us more than you praying with us at that time as they begin.

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving present your requests to God.” Philippians 4:6

29/08/2022

Today I put my FAITH over FEAR and notified the appropriate doctors that we would proceed with the corpus callosotomy for Josie. To say I’ve struggled with this decision is the understatement of the year. I get torn up talking about it, thinking about it, praying about it. I never want her to hurt and I know how long and hard this surgery is. And I know the days and weeks after will be harder for her and her brothers than it will us. Surrendering it all for an outcome that is greater than I can expect and all that she deserves!

A few specific prayer requests in this moment. Pray with us that surgery happens in the Lords time. For Josie’s health to be at its peak before surgery. And we continue to find the strength to get us through this emotionally difficult time.

We will continue to share and update more as we can.

27/07/2022

Did you know the glue that holds the EEG electrodes to the head can burn the skin if not removed prior to an MRI? Now you do….we spent some time with a wonderful nurse in radiology using adhesive remover to get all the glue off her scalp this morning.

I didn’t get an immediate after picture because Josie was very agitated at the process of taking that mess out of her hair. Then we washed it the best we could (which wasn’t really good at all 😩). Since Josie has been on the Keto diet we don’t get to see her regular neurologist but rather the doctor who oversees the keto clinic. Just so happened he was on call the past two days and we got to spend some quality time with him. Let me say that if you need the best we will happily refer you to him. I asked late Monday afternoon if we could possibly do a MRI while we were there rather than having to drive back and he made it possible for us, so we added that to our hospital trip. Due to Josie being sleepy and agitated we worked it out to do labs before her IV came out and changed her doctors appt from in person to telehealth. This got us home about 6 hours earlier than we originally planned.

Back to our neuro, we have updated the EEG and the MRI so that he can present her case to the surgical review board. Unfortunately, Josie has failed so many pharmaceutical medications that the odds any or a combination of any will actually help reduce or stop her seizures. We are going to start a new drug we have yet to try but I’m not over here holding my breath that it’ll help. Therefore we are going forward with the next step of getting the VNS implanted. We hope this will help but only time will tell. The determination will be made in roughly three weeks and we will know something the day after. Both Logan and I are on board with placing the VNS. They will also discuss whether she’s a candidate for the corpus callosotomy, surgery of dividing all or part of the corpus callosum. The corpus callosum is the bundle of nerve fibers that connects the two brain hemispheres. This would be a decision that’s not made overnight, prayed upon heavily but would only happen if the VNS doesn’t work to her benefit. Which would be a down the road decision.

Later on I’ll update about the MRI results and her brain structures, I just need time to review it and process it all. There were moments during our telehealth visit that we were cutting in and out so I don’t want to speak wrong about it.

I hurt so much that she has never had a “normal” life but we sure want her quality of life to be far greater. Please continue to keep Josie in your prayers and as always share her journey with others!

25/07/2022

Hanging out in Nashville for a few days to update some tests. We’ve been MIA for a few months and we apologize, jumping back in and hoping to do better. 🤗

05/02/2022

We love when we find something new that works so well for Josie. And we like passing along that information because someone else could benefit. That’s how we found out about this chair because another special needs mama shared it and we are so thankful she did. This swinging hammock chair came from Costco and we got for Josie for her birthday. I did check with Sam’s and they did not have one similar, I didn’t think to check on Amazon but you know you can find anything there.

Hope this little bit of info helps another family and their kiddo enjoys it as much as Josie and her family does!

23/01/2022

Someone painted Josie’s the prettiest sunset for her special day!!

23/01/2022

8 is great!!! Thankful this sweet girl of ours took another trip around the sun. She’s moved so many mountains and changed so many minds in her short eight years. Today we celebrate her to the fullest. She has a special homemade Keto cake waiting on her (and let me say healthy cakes are still cakes) and she can eat all she wants of it! And I think mom is going to pamper her a little extra today as well!

We chose to forgo a “regular” birthday party this year and will instead be doing an annual birthday bash fundraiser in Josie’s honor. Stay tuned for details!!

Happy Birthday Josie Mae!! 🎉

#2022 💜💜💜💜💜💜💜💜

14/01/2022

Truthful Thursday.

Josie’s teacher sent me a behavior assessment packet to fill out. I text her and asked if I had to fill out the whole thing, “yes”, she replied. Okay so you sent me homework and I have to fill it out and send it in tomorrow…fine then. I would rather let my dog eat this homework and be sent to detention than circle a bunch of zeros, which means “is not able”. I’m a lot of emotions over this.

The last several years I’ve grown a pretty thick skin to criticisms in IEP meetings, therapies, doctor appointments. I try hard to not let the obvious…my daughters developmental delays, her 24/7 dependency, her being non-verbal, you get where I’m going…not bother me to the core. SO, when I read through this (which is becoming asinine) I’m getting angry, I’m sad. I’m horrified that the system thinks it’s okay to toy with a parents emotional state in this way. Just flipping fill it out, don’t ask me what you all ready know.

The pi**ed off part wants to make sarcastic comments because that’s what gets me through. The sad part wants to just turn it in blank. The strong part is here letting you know that not everything in life is enjoyable. Even down to the most depressing, painful reminders as simple as paperwork.

Are we blessed? Heck yeah! Are we thankful for our girl? Most freaking definitely!

I’m not here complaining for the sake of complaining. And I’m most certainly not here complaining about her teacher, because she has the best teachers. It’s the process that is discouraging to the already depressed part of life we choose not to focus on.

I’m sure I’ll have to review the results or upcoming test scores, another nail into the heart. Maybe I’ll ask not to receive them and request they be sealed or burned for that matter. Because no amount of zeros will define who Josie is and I sure won’t let it steal my time and worry over it.

The bright side is I gave her a bunch of 3’s for looking at people, smiling at people when they talk to her, that she distinguishes truthful from exaggerated claims (because this girl knows shady people), she listens to friends and family who need to talk about problems, she laughs in response to funny comments or jokes and that she has friends. And of course a few other things.

But y’all that’s ALL that matters!!!!
💜💜💜💜💜💜💜