The Power of Social Media

I openly share on social media about my crazy family and our adventures. We are just simple people who end up going through kooky adventures on this journey called Life. More so now my posts have been prevalent regarding my daughter Tatiyana's illness with Cyclic Vomiting Syndrome or CVS http://cvsaonline.org/what-is-cvs/ and Abdominal Migraines http://now.howstuffworks.com/2016/04/26/abdominal-migraine. I share to vent, to ask for prayers, to ask for advice, to ask for encouragement, to ask for suggestions and a way for me to put out into the universe that I need answers for my daughter!

No child should ever suffer a chronic illness or any illness for that matter. As a mother my heart constantly breaks for her as the life that she knows it has completely changed. Our faith in God has grown even stronger through this battle and we are thankful for our faith to keep us going each day.

Tatiyana has had this illness since she was a baby, but when she was younger, the episodes were too far apart to red flag doctors that it was something more serious than a bug or the flu. With Tatiyana being our first child and first time parents we trusted our doctors to give us the guidance and information we needed. By 2010 Tatiyana seemed to no longer have episodes and from 2010-2014 she was episode free. We completely forgot about the illness and didn't think nothing more of it and moved on with our busy lives.

In August of 2014 Tatiyana was sick with what we thought was the flu. I had this awful pain in my stomach as her symptoms seemed so eerily familiar. Tatiyana was then sick again in September, November, skipped December and then sick again January 2015 we knew it had come back and was time to see a specialist. We were no longer with Kaiser and our new Sutter Doctor had no idea about CVS so we had to educate him on what we knew.

January, February and March 2015 Tatiyana was hospitalized and by April 2015 it appears we had a medicine regiment that was working and prevent episodes. Tatiyana went episode free from April 2015- September 2015 and it came back again. This time even harder and stronger. October, skipped November and December were 8 day episodes each and I thought we have finally hit the worse. January 2016 came around and little did we know that CVS would change our daughter's daily life. Today is May 9th and our daughter has had literally daily episodes with maybe 1- 2 day breaks in between since January. Our lives have forever changed.

During this time my mind constantly is researching lead after lead, suggestion after suggestion. As desperate parents we want to check out every resource we can. Feeling like western medicine was no longer helping our daughter, but possibly making it worse. It truly was confirmed when Tatiyana had a good day and she said "Mommy the medicine makes me even worse. I don't want to take it anymore. I want to fight it and I can do this mommy." Immediately my husband began the guided meditation routine and breathing techniques to alleviate the pain as all the pain killer meds were not even giving my child the relief she needed.
Back tracking to early 2015, I received Facebook friend request from a Keller Williams Realty agent in Fresno, CA. Now in the past I would accept every single friend request since I so love networking. Eventually I was being more personal on my page, I decided to limit it to people I have actually met first. For whatever reason I decided to accept this friend request as how many times I was going to ignore it, something kept telling me to just hit accept. I figured his mutual friends appear to be all the top producing real estate agents in the country, he definitely would be someone I could certainly connect with and is likely to be a reputable and top agent in his community.

Fast forward to October 2015, I get a FB message from this KW Agent. He stated that he had went through hash tags on Instagram #CyclicVomitingSyndrome with his wife and seen some of my posts and realized I was his friend on FB. He shared with me that his son had the exact same illness and was in the hospital nearly 57 days and was on many medications. He said that him and his wife decided to go the Holistic medicine route and that they have been so far one week free from an episode and is literally off all of his medications. I was stunned!!! I could not believe it and it just was so unreal. I looked up the website and tried to read up on it and then I got lost with life and caring for the family and work and responsibilities I didn't follow up on it and plainly forgot all about it.

Fast forward to April 2016, I'm sitting in the hospital room watching my daughter sleep and scrolling through FB and I see this agent make a post on my newsfeed and something in me clicked and reminded me to message him and ask about his son. I quickly send a message asking how his son is doing and within minutes his wife is calling me.

I could not believe my ears as she describes her 11 year old son's story and it felt like she was telling me my daughter's story. I was even more in tears to find out that her son has remained episode free since October 2015. The date since the agent last messaged me and sharing their success story.

As soon as I got off the phone I make the call to the doctor and the soonest they can see Tatiyana is May 10th. Ironically the very next day the doctors tell us there is nothing more they can do within their capacity and that the only course of action would be to take anti-depressants. My husband and I drew the line there as there was no way we would entertain that route. Our daughter is not depressed. She is in pain. The side affects of the suggested meds seem far worse than what she was going through. Find out why she's in PAIN!!!!! Find out WHY these episodes are being triggered????!!!!

These last few weeks since her last release from the hospital has been so tough as each day has been bad and good and good and bad, but hope to carry us through that she will have a chance with this doctor and this new treatment.

As with anything that's good and truly healing for someone, the down side is this treatment is NOT covered by insurance at all. Of course, how would the medical industry, pharmaceutical industry, insurance industry make any money on treatments that actually heal someone. That actually goes to the root of the problem instead of masking it with man made medicine. I can go on and on about that, but i'll save that for another blog/rant.

As I was venting to my dear friend and fellow agent Terri about Tatiyana's progress, she tells me that our KW office wants to help. That our friends in the industry want help. I was floored and overwhelmed with love and emotion as my colleagues, business partners and peers came together to raise money to cover 10+ treatments/supplements for Tatiyana. On top of that they created a meal train and delicious meals have been delivered to our home a couple days a week. The kids had no idea and so when they found out they were so shocked and overwhelmed. Tatiyana said "Mommy we are the ones who are suppose to help people!" I said "They love you so much they want to help you this time." Tatiyana says "Well if they bring over food then they will have to just eat with us!" https://mealtrain.com/zqmqgr

Colin and I are so Thankful and so full of gratitude that so many people would just come together and give and give and give. We don't know how to ask for help as we find joy in helping others, but by receiving help we realized how much we did need it. How much it helped just taking off one last thing off the to do list and that there is a meal ready for the family.

Even with medical insurance, the out of pocket costs that are not covered begin to mount up. As we depleted savings to try to stay ahead and catch up, hospitalization stays have been a huge hit to our finances. Whatever sacrifices we have to do as parents to provide for our children, so be it!!! The harsh reality was the thought that even if I had millions and millions of dollars, I was being told there was no cure out there for this illness.

BUT TODAY, we have HOPE! Hope and love to carry us through. Hope for a new treatment to give our child the relief and peace she needs. Hope that we can share our story to many other sufferers throughout the world and will be healed as well!

I ask all of you to pray for Tatiyana as that is the way you can help her and help us. Tuesday May 10th will be her very first treatment and every day for one week. The doctor is in southern California and so though it is miles away, whatever it takes, we are willing to seek that treatment.

I asked for a smile and she still gave me one even in pain

I couldn't be even more grateful for how the stars have aligned in our daughter's favor. No matter how tough and challenging and heartbreaking this has been for our family, we have been blessed to experience human kindness and generosity at its finest. The love and support of family and friends near and far has been amazing and we are so forever grateful.

Whatever the outcome, we know that this is all part of our family's journey and God's master plan.

Thank you all for the love and support you all have given my family. We are truly grateful. God Bless you all!
#PrayersForTati #CVSWarrior #CyclicVomitingSyndromeAwareness #ChronicIllnessAwareness #YipFamily #YipDynasty

Prayers for a safe journey to Southern California