Natalia - Journal
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Natalia had a great Easter weekend, celebrating our resurrected savior, Jesus Christ with family and friends!!
On Sunday afternoon, she decided to be a gymnast, and did quite a few hand stands (a Dr. Cheong NO-NO) with her cousins. Being that Gymnastics is on the DO NOT DO list, She ended up landing wrong and was in immediate pain. (Evidence número uno: her sweet cousins FILMED the entire incident!😂)[...]
This dreaded post breaks my heart......I will admit it.....this journey does not get any easier, I have put off writing this for a while......and I am left once again asking The Lord to let me take this from her....PLEASE....because...I don't want my daughter fighting another life-long, complicated disease. NO. We just want life to settle into a normal....moving away from all these doctors(nothing personal), and into a new way of life/new normal.
After months of tests, symptoms that were worsening, and follow up after follow up, the doctor decided to do an MRE.(It's an MRI to view the entire abdominal cavity. Specifically, the large and small intestine). The findings confirmed what the blood serum results showed.....she has a debilitating auto-immune illness by the name of Chron's disease. The good news? There is no cancer and they STILL do not see a tumor/mass in the intestine. PRAISE JESUS!!
It is so painful to watch your child go thru daily pain...be so lethargic, have frequent low grade fevers, the loss of appetite....(leading her to be malnourished, and have significant weight loss), frequent headaches, abdominal pain and distention, swollen, painful extremities, bones/joints, severe osteoporosis (worse NOW than two years ago)...I could go on.
She started her "treatment" a few days ago, it is all trial and error. The treatment is debilitating and brings on severe back pain and headaches.
In addition, they have to keep a close eye on her kidneys, because the meds are nephrotoxic. Meaning that the medication "can be harmful to her kidneys, causing renal failure." If this medication does not work, then the doctors will move to the next tier of stronger meds. This treatment will help reduce the inflammation in her small intestine, and help her mineralize her bones, gain her appetite back, so that she may gain the weight she needs for growth and hopefully, she could climb back up the charts from the third percentile.
Having said all that, I MUST shift my gaze back to the cross....to JESUS. My faith and hope is in The Lord Jesus.....Otherwise, I would be consumed with grief.
It is in the pit and the thick of our trials that our faith is tested. THAT FAITH IS OUR VICTORY. James 1:2-3 says Consider it nothing but JOY, my brothers and sisters, whenever you fall into various trials. Be assured that the testing of your faith through experience produces ENDURANCE leading to spiritual MATURITY, and inner PEACE.
FAITH on the fact that he has already died on the cross for her complete healing. Isaiah 53:5
But he was pierced for our transgressions; he was crushed for our iniquities; upon him was the chastisement that brought us peace, and with his wounds we are healed.
FAITH on the fact that the word of GOD is TRUTH. Trusting in the word of God...all feelings aside.
God's Soldier must march on....I am going to hold on to his word, his promises, his ultimate sacrifice on that cross for me, for Natalia Sofia, for YOU.....[...]
Welcome to the Natalia support family! This site is for family and friends, old and new, to organize our efforts to support this extraordinary person. This page will serve as your home base for rallying the troops, receiving updates , and raising dearly needed funds to support Natalia . Here's the plan:
Your First Step: Please take 30 seconds to click on the "Follow" button on the top right of this page. This will allow you to receive updates, read journal entries, make donations, share Natalia ’s story on social media, and help the family with week-to-week calendaring needs. Though not mandatory to follow Natalia ’s page, we encourage you to easily create an account with your name and email in order to be able to post photos, leave comments and sign up as a helping hand on the Calendar page. Feel free to upload a photo of yourself to your profile so we can get to know and recognize others on Natalia ’s support team. After clicking “Follow” above, read on to learn more about what you can do to help.
Journal: This tab is where you can read the latest entries posted for Natalia and our support team. You may see additional authors writing updates here to help alleviate pressure for Natalia and expedite information sharing. Each post is followed by a photo and name of the author of the entry. You can reply with supportive comments to any journal entry, or click on the name of its author to send a private message.
Posts: This is where you can leave an encouraging message for Natalia and family, and to read thoughts left by others! If you have something pressing you'd like suggest that everyone sees (e.g. a fundraiser or upcoming event you're spearheading), please don't hesitate to contact us via private message so we can consider sharing it more widely in the Journal sections. There will undoubtedly be many coordinated efforts and events ahead, and we want to make certain they’re organized and publicized through this site to help drive the greatest possible impact.
Calendar: Please see this important section to learn what the family needs NOW. This will be an especially helpful section for locals in close proximity to Natalia . This is an up-to-date calendar which will list the family's immediate needs such as child-care, rides, and meals to help most in the short term. If you see a need posted and can fill it, please sign up through the calendar page directly (i.e. not through private communication) to let us and others know that you've committed to that need. Please check back often to help out with the most recently posted needs!
Donations: The very most impactful way to help Natalia ’s is to make a direct donation right now. After insurance participation, bills and related costs are expected to reach several thousand dollars. This fund will be used at the sole discretion of Natalia and family to help manage all related expenses, and will give them the flexibility to take time off work as needed to directly support Natalia ’s. Donations can be made securely using credit or debit card for any amount. PostHope.org generously makes these donations free of any fees. All donations, large and small, come with the eternal gratitude. Thank you for your generosity in considering what amount you are personally able to give.
Perhaps more importantly, you will also find the tools to share your donation and Natalia ’s story with friends and family via Facebook and social media. After donating, please click the social media buttons to share far, wide, publicly and OFTEN! We believe that many kind strangers online will feel moved by Natalia ’s journey.
Notifications: After clicking “Follow” above, you’ll then see a tab to manage “Notifications”. If you feel you’re receiving too many or too few email notifications, please check this section to tailor notifications to your areas of interest. For example, if you want to receive journal updates but not new calendar posts, or any combination of notifications from this site, you can do set them to your preference this section.
Don’t Forget! If you haven’t done so already, please click “Follow” on the top right. It’s your very next step to showing your support!