Our STEM CELL Experience with Dr. Shieh

 

As you may know by now, we will continue to seek out all medical options + therapies for our sweet girl.  Finley is almost 4 years old and was diagnosed at 15 months old with "Mild Spastic Diplegia Cerebral Palsy."  Aside from intensive therapies, we do everything we can for her (check out other blog posts). She underwent the Selective Dorsal Rhizotomy Procedure this past October, with Dr. Park in St. Louis - which permanently removed the spasticity in her body. (READ MORE HERE.) While you're researching ways to improve your child's quality of life when it comes to their cerebral palsy, you'll come across SDR.  You will ALSO encounter Stem Cell Therapy. It's extremely pricey and still considered to be in the "research phase," but word on the CP Community Street is that it in fact does wonders! My understanding is that the cells enter into the body and begin "getting to work" by traveling to places in the body they are needed.  In patients with brain injuries or neurological disorders, the stem cells are able to bridge gaps and form newer neurons that repair the damage to the brain, some result in miraculous improvements with just one treatment. When I refer to Stem Cell Therapy it means one single session or one transfusion.  Bear with me, I'm not a doctor by any means and I am doing my best to deliver a really informative blog post on this complex medical treatment.

My husband is a devoted listener of the Joe Rogan Podcast.  One of the guests on his show was what I would call a "typically healthy" individual and it seems as though he opted to undergo Stem Cell Transfusions to see if he could become stronger or healthier. Can you imagine? Some people obviously have gobs of money... but this was a way we were able to learn about the use of the cells, which is just extremely interesting, isn't it? Pardon the profanity and illicit content, but if you want to listen to that podcast, click HERE.  

I knew Stem Cells were something we would totally do down the road, I thought our only chance would be enrolled in the Stem Cell Study at Duke University (FOR MORE INFO CLICK HERE).  I was at peace with waiting for the Duke study, I really believed we had no other option.

So many have asked me how we found this office or why we chose this particular facility. There's really no short way to explain the nature of our association to this Office/Doctor.  A few months ago, I received a message from Dr. John Shieh (pronounced "shāy") of RejuvaYou- located in South Pasadena, Ca.

Quick background on our relationship with him:  Dr. Shieh adored my Dad and also treated him. My dad was a KKLA 99.5FM Radio Host of "The Frank Pastore Show"- which won the NRB's 'Talk show of the year' several times (Proud Daughter brag moment.) It was an LA drive time show and he was just the best- naturally he developed some great relationships with his sponsors.  RejuvaYou was one of them.  Matter of fact, the day my Dad was struck on his motorcycle- he spent his morning getting a treatment in Dr. Shieh's Office.  My dad later passed away due to complications, which was about 4.5 years ago now. Dr. Shieh and his family were so wonderful through it all.  He continues to treat my Mom and Sister-in-law. 


The message read:

"Hello Christina, 

I hope all is well for you and the family.  I've been following some of the great progress with Finley and she is truly blessed to be in your family, and I'm sure you are all blessed by her too! 

Anyway, I was wondering if you had looked into stem cells for her?  We've been doing stem cells for a few years now and have seen amazing response with previously untreatable or terminal conditions.  We were using adipose derived stem cells first, and I have the latest advanced device for processing and separating stem cells from the fat.  One case I did was on a 2 1/2 year old boy who was a drowning victim.  He was in the water for 20 minutes and all the experts thought he wouldn't survive, much less make any type of progress in recovering.  For about a year he was stagnant in improving. But, after a year I did his stem cell procedure and within 3 weeks his therapists and other doctors were shocked by his sudden improvements.  He became able to swallow on his own, make single vowel sound words, and started to stand on a walker.  That first case we used his own fat.  But just recently we used new cord blood stem cells. 

Recently the FDA approved stem cells derived from donated newborn cord blood.  These are from screened, healthy newborns.  Those cells are ideal for people who don't want to undergo the mini-liposuction procedure, and they are much better than the cells from an older persons fat.  

The main way these stem cells are administered is through a basic IV.  

For other cases, like brain injuries and Parkinsons, we would also also administer via nasal spray because the cells travel up the olfactory nerves directly into the brain.

  Anyway, I thought I would just mention this to you in case you had thought about it.  You no longer have to go out of the country for that, and in those places you don't know what you are getting.  Also, even local places are sometimes shady because they aren't using the best possible stem cells. 

Of course if you wanted to do this for Finley, we could work something out.

Wish you all the best,

John Shieh"



Shock. Tears. All the feelings. It was an answer to one of the many prayers that we pray for Finley. 

17884252_633232830134869_8628422784639123593_n.jpg

A few weeks later, I took Finley in for a consultation. Dr. Shieh needed to see what her vein situation was and make sure it was something we could do in his office and bypass 'putting her under'.  I really like to avoid anesthesia. I never opted for it when she received her Botox treatments- because it is such a quick visit and a little Diazepam (Valium) always does the trick. 

We discussed everything he wrote in his initial Message- but with a little more informal Q&A. Basically, though, the message hit all the key points. I always thought that Stem Cells had to be harvested from one's own umbilical cord. While this used to be the case, the screening process of Donor Cord makes them just as good to use. These donor cord stem cells are 'immune priveledged' which means they don't cause any rejection when given to a person different from the donor. I got hundreds of emails from parents specifically asking about THAT- rest assured there are options for you guys and your kiddos out there! Expensive- but they exist!

Our two options:  

1. We could do a mini-lipo on her and pull stem cells from her own fat. (Number of cells vary depending on amount of fat harvested, but usually range from 30 million to 100 million+.)

2. We could use Donor Cord Stem Cells. (This comes in pre-counted vials of 30-million stem cells, the dose can be chosen based on weight of person receiving treatment.)

Whether they use cord derived from stem cells or adipose derived from stem cells, they also come with tens of millions of other regenerative cells and growth factors that play a role in the regeneration of damaged tissue.

We both agreed Donor Cord Stem Cells were our best option. Dr. Explained to us that he's used Donor Cells on himself and patients and only seen great results. (Reference his initial message again.) There are two banks in California- one in San Diego and one in Irvine- so the cells were to be driven up the morning of the appointment. 

 

The BIG DAY arrived and I brought Finley in for her appointment. She ate and did everything as normal.  I was anxious simply because, I'm a mom. I thought, "What if she has some crazy reaction and dies?!"  My husband smiled and said, "No one has ever died from stem cell treatments. It's like getting a huge boost of amino acids injected into your body. They are super nutrients! It's the medicine of the future, we are so lucky to be doing this for Finley- it's awesome!"  He's always been the optimistic type. Let it be a testament as to how you can KNOW something is good and still be anxious. That's motherhood at it's finest. 

About 30 minutes before the appointment she took a dose of her prescription Diazepam.  Which I really hate giving to her, even though it's prescribed for her to be taking nightly (it can help with muscle spasms - but thankfully she doesn't have them). If she were to be doing this in a hospital, it's the same medication they would give her before they administer the IV to be putting her under anesthesia.  It brought her to a nice, calm, and happy place. 

She was very relaxed, but still watched intently as the staff positioned themselves around her.  The Doctor administered the IV.  Once everything was situated, I feel like he could sense my heart beating out of my chest. He held the large syringe of Stem Cells and said, "Let's Pray first."  It was such a beautiful and calming prayer, his heart for Christ is just so amazing. He administered the Stem Cells into her IV, and then took a small amount and sprayed it into her nose.  He told me that studies show how the cells will multiply about a dozen times or more once they are in the body, and that administering through the nasal cavity ensures they penetrate into the brain - where her injury is. (Which he also mentioned in his initial message.) She didn't love that part, but who loves having an odd smelling liquid sprayed up their nose?  It does have a very distinct scent.

I asked about side effects again. The only side effect would be if she were allergic to the Sulfa that the cells were stored in. Sulfa is common in antibiotics, which she's taken- so I brought Benadryl just in case (Mama Bear on duty) - but we were confident she was going to be just fine. (AND she was. Thank you Lord.) 

 

BOW: @mercibowcoup + Outfit: @royalandreese 

BOW: @mercibowcoup + Outfit: @royalandreese 

The Appointment was about 1 hour from entry to exit. It will take a few weeks for the cells to get all situated in their new home and we will see continued results as they 'connect the dots'. They don't wear off and improvements won't subside.  Doctor said it could take up to a few weeks for the cells to reach full potential. They way I see it; these cells are bridging previously damaged gaps, once restored it will still take time to see continued results - they are creating a pathway for progress, which we are beyond grateful for!  Every little improvement helps.

Post Transfusion Smiles with Dr. Shieh

Post Transfusion Smiles with Dr. Shieh

That night my husband and I already saw something that was an incredible improvement. Oh how I WISH I had video to showcase this: 

Pre SDR surgery: Finley could not move her toes. 

POST SDR surgery: Finley could move her toes in a direction, ever so slightly. 

POST Stem Cell Therapy: Finley could WIGGLE her toes! 

We have seen so much progress!  Her energy levels have been substantially heightened.  She's more inquisitive, using a larger vocabulary with her speech, she scratches parts of her body she never did before, she's differentiating between her toes 'hurting' and 'itching'- (I believe she possible nerve damage from the years of spasticity she had pre-SDR.) She's also RUNNING BAREFOOT in her walker. She used to not be able to maneuver in it without the support of her braces. That was all observed on DAY 1.  As of 6 days out: she tells me when her diaper is wet, and has more control with her Fine Motor Play.  She even pulled to stand in a shopping cart- I cheered her on and people thought I was nuts! Haha!  Progress as of about 10 days out: Finley is swimming substantially better in her floaty, her movement seems more controlled.  She insists on walking almost everywhere, and has even mastered crawling up onto new things.  Her bowel movements have always been strained, and even though they've improved since SDR in October 2016, she is now having no issues going.  Which is pretty incredible. 

shirt: @rockinthreads

shirt: @rockinthreads

I'm so excited to see what the future has in store, I know walking independently is on the horizon.  We will definitely be continuing fundraising with Youcaring for future treatments.  I believe you can undergo as many treatments as you can afford (remember: even "healthy" people do it).  Since posting on Instagram, I have received many heartfelt emails! Wow the tears reading them all- THANK YOU!  


If you have any questions that are not answered in this blog post, please email me at FIFIANDMO@GMAIL.com 

For Dr. Shieh's Office please contact:

 RejuvaYou 626.441.8968

or

check out more info on their FACEBOOK PAGE  while the website is being updated. 

 
I have read that typical costs per Stem Cell Transfusion range from $12,000-$25,000+. However, for these special circumstances- Children with CP may be treated by Dr. Shieh's Office for under $10,000 - while costs could vary depending on other factors, most of the time it will remain under $10,000. 

8 Must Have Mommy + Me Swimsuits This Summer

(Yes, there's even shops for you BOY mamas too!)

It's no secret I'm a fan of twinning with my mini. We get asked ALL the time about our matching suits, so I wanted to feature some of our favorite Instagram Shops and their adorable Matching Sets.  I asked each brand to share with us some of their staple pieces- it was SO FUN doing this shoot! Finley had a great time modeling each suit, but it was one of those days- my little #threenager couldn't live the day without her bandaid. She had a "headache" so, naturally a bandaid is the answer. LOL! Gotta love it, we just rolled with it. I didn't have a professional editor to make me all skinny and remove my cellulite either. Crazy. I know I didn't carry a baby, but I carry the reality of having no time or desire for an unrealistic supermodel body. These are my curves, so please be kind.  It's definitely scary posting this many consecutive swimsuit pics lol- Real Life is our JAM, okay?

 

 These shops are SO SWEET to be offering a discount to our friends- use code 'FIFISFRIENDS' for a lil % off at checkout! (The names are live links that will take you to their instagrams so just tap on them!  Be sure to follow each one and be on the lookout for special offers!)

NOW, here they are in no particular order:

 

@mademoiselle_louise_mommyandme

NAME: Mademoiselle Louise | MommyandMe Collection

LOCATION: Miami Beach

WEBSITE: www.mademoisellelouisedesigns.com

AVERAGE TURN AROUND TIME: 7-10 days

SIZING TIPS: True to size IMO

PRICE RANGE FOR MOMMY AND ME SET: $89

WHAT'S THE HEART OF YOUR BUSINESS? "Each suit is handmade with LOVE by a French Designer."

ANY CELEBS SEEN IN YOUR SUITS? French Celebrities, but no American ones to date.

 

 

 

@SugarDollz

NAME: Sugar Dollz

LOCATION: Canyon Lake, CA

WEBSITE: www.sugardollz.myshopify.com

AVERAGE TURN AROUND TIME: 12-18 days during peak season

SIZING TIPS: If you're in between sizes, go with the larger size.

PRICE RANGE FOR MOMMY AND ME SET: $110-$140

WHAT'S THE HEART OF YOUR BUSINESS? "The heart of my business is my love for designing swimwear for Mamas & their little dollz.  There is nothing more rewarding than creating memories for hundreds of Mommy & Me duos around the World." 

ANY CELEBS SEEN IN YOUR SUITS? You may have seen COCO Austin + Baby Chanel or Meghan King Edmonds + Aspen King Edmonds in our Suits. (Little Dollz Swimwear)

 

 

 

@sunhaze_

NAME: Lana Reid | Sunhaze

LOCATION: Sunshine Coast QLD Australia

WEBSITE: www.sunhaze.com.au

AVERAGE TURN AROUND TIME: 1 day to a week, plus postage.

SIZING TIPS: True to Size IMO.

PRICE RANGE FOR MOMMY AND ME SET: $170-$190

WHAT'S THE HEART OF YOUR BUSINESS? "The heart of Sunhaze are the wonderful women that have Sunhaze swimsuits and their Daughters and Sons."

ANY CELEBS SEEN IN YOUR SUITS? "We have had Amber Fillerup Clark in some of our swimsuits with her gorgeous Daughter.  We love to see ALL the happy snaps of everyone enjoying our swimsuits."

 

 

@reddollyswim

NAME: Heather | Red Dolly Swimwear

LOCATION: Portland, OR

WEBSITE: www.reddollyswimwear.com

AVERAGE TURN AROUND TIME: All items in stock and ready to ship!

SIZING TIPS: I have this suit in size small (pictured) and size Large. I normally wear 6/8 or L in swimsuits. I feel more comfortable in the Large, but I usually like to be pretty covered up and loosely on the rear. lol. I say order True to Size.

PRICE RANGE FOR MOMMY AND ME SET: $110-$140

WHAT'S THE HEART OF YOUR BUSINESS? "We design vintage and retro style suits with modern fabrics & fit to give women a comfortable option, and cute matching suits for little ones too!"

ANY CELEBS SEEN IN YOUR SUITS? Not yet, but we did recently send a bunch to Taylor Swift's stylist who personally requested them.

 

 

 

@thesaltybaby

NAME: Tina | The Salty Baby

(OFFERS MATCHING SUITS FOR BOYS)

LOCATION: Newport Beach, CA- the suits are shipped from Miami.

WEBSITE: www.thesaltybaby.com

AVERAGE TURN AROUND TIME: suits are shipped within 48 hours of receiving the order, usually arrive within 2-3 days. 

SIZING TIPS: True to size IMO. 

PRICE RANGE FOR MOMMY AND ME SET:  Around $160 (lots of coupon codes randomly offered.)

WHAT'S THE HEART OF YOUR BUSINESS? 'I started this line after having a baby girl, because I realized how frustrating it was to take a bathing suit off and on for diaper changes.  I really just had the idea in my living room one day and decided to go for it.  When I saw how much people liked it, we started making Mommy + Me sets- including suits for little boys!  Moms had enough frustrating moments throughout the day changing a diaper with a wet suit on should be as easy as possible- while looking cute too!'

ANY CELEBS SEEN IN YOUR SUITS? Not yet.  We recently sent suits to Meghan Kind Edmonds and Ali Fedowsky.

 

 

 

@freshpeachesswimwear

NAME: Fresh Peaches Swimwer

(OFFERS MATCHING SUITS FOR BOYS)

LOCATION: Rancho Cucamonga, CA

WEBSITE: UNDER CONSTRUCTION

AVERAGE TURN AROUND TIME: Around 5 Weeks

SIZING TIPS: Every suit is custom and hand cut, so they make any style in any size and modify the styles to accommodate the customer. 

PRICE RANGE FOR MOMMY AND ME SET: $170

WHAT'S THE HEART OF YOUR BUSINESS? "We are Family owned and operated and have been custom making swimsuits for all shapes and sizes since 1979.  The heart of our business is helping every woman walk out of our store feeling confident in a swimsuit."

ANY CELEBS SEEN IN YOUR SUITS? "Being in the industry for so many years, we have made swimsuits for state pageant winners, playboy playmates, reality tv stars, models, magazines photo spreads, national champion body builders and every type of woman in between.

 

 

 

@aureinswim

NAME: Angel + Jeffrey | Aurein Swim

LOCATION: Vancouver, Canada

WEBSITE: www.aureinswim.com

AVERAGE TURN AROUND TIME: (Free shipping on all orders!) 5-7 business days to the US

SIZING TIPS: Refer to Sizing Guide on each item. Message on their Facebook Page for one on one consultation.)

PRICE RANGE FOR MOMMY AND ME SET: $150-$228 (suits under 12m are half-price)

WHAT'S THE HEART OF YOUR BUSINESS? 'I started the brand because everyone is selling sex and fast fashion, which doesn't really fit my need as a new mom.  Now that I have spoken with enough with my customers, it makes me really happy that I can deliver that, 'this is it' swimsuit for moms.  New moms are very much forgotten in this industry, we spend most of our money on health food, products for our kids and families, and functional items for ourselves. Aurein Swim is a little something nice moms can get for themselves where they can feel beautiful and don't have to worry about their movements when playing with the kids during water activities.'

ANY CELEBS SEEN IN YOUR SUITS? Cara G, a supermodel and mom of two who hosts 'Who Wants to Be the Next Top Model' in Asia.

 

 

@lilchocopink

NAME: Yvonne | Lil Choco Pink

LOCATION: San Gabriel, CA

WEBSITE: www.littlechocopink.com

AVERAGE TURN AROUND TIME: 1-4 days

SIZING TIPS: Go a size up for a better fit on top.

PRICE RANGE FOR MOMMY AND ME SET: $54-$60

WHAT'S THE HEART OF YOUR BUSINESS? "Providing excellent customer service and hoping my customers enjoy their products and are happy with them.  

ANY CELEBS SEEN IN YOUR SUITS? Everyone is a Celebrity in our eyes! We love seeing you all in our suits, be sure to tag us!

 

 

 

Why We Celebrate Birth-Mother's Day

Four years ago, I spent Mother's Day in our empty nursery sitting on the floor, weeping.  I had my weak moments, this was one of them.  I tried not to question, "why me?" instead I tried to visualize the future that I wanted so badly.  I couldn't quite picture a child's face or imagine what life would actually look like.  I just knew that it would be complete.  After facing the constant emptiness + heartache of infertility, I knew in my heart that adoption was our option.  It was how God was leading my Husband and I to become parents.  

Unless you've experienced it, you'll never be able to fathom what it feels like to be 'waiting to adopt' or a 'hopeful adoptive parent'. Talk about hope.  You essentially are waiting for someone to look at a scrapbook about your life and say, "Yep that's them.  I want them to parent my unborn child."  It's a big freaking deal - because odds are there are hundreds of 'scrapbooks' to choose from. What makes our life so special that we will be chosen? Why us?  I feel like this is the forgotten stage of the domestic adoption process.  Some families wait years and years to be chosen.  How could you possibly expect me to go from wanting to be a mother so badly, to dismissing the very person that is responsible? Let's remember that she actually CHOSE me to do this, out of many deserving candidates. I thought I could be the Adoptive-Mom that shares photos with a Birth-Family and occasionally has a visit.  Never did I think I would be in an active open adoption.  Never did I think that I would feel so confident that the mere use of certain "adoption trigger words" would no longer trigger me.  It's taken a lot to get me here, but I can't help but think it was a chain-reaction set off by one thing I did.  Shortly after we were chosen, I wrote a letter to myself. I wanted to remember all that I was feeling. I encourage every waiting mother to write this letter.  It is VERY important that you remember how you felt in this chapter of your life. 

The Day we got THE CALL was one I will never ever ever forget. Being chosen felt like a lottery win.  I pictured the life of this expecting woman and everything she was possibly going through, and was filled with different emotions.  Felt more like every emotion.  I was full of joy for us, but I was equally filled with sadness for her. Our greatest gift was surely going to be her biggest heartbreak.  Everytime I could feel my 'sad' emotions creep up I would reassure her that we were a great choice and we would do everything to be the best parents.  My new hope was to be the EXACT parent she wanted for her unborn baby girl. 

Shortly after Finley was born, it came time to sign THE PAPERS.  Lex was relinquishing her rights and we were accepting parental responsibility.  Such a legal matter and I know we are trained to abide by the law, but in this capacity- it felt unnatural.  I remember sitting across from each other at the table and passing her the pen, being scared to make eye-contact with her for fear that I would feel too intense of guilt. The tears just streamed down our faces, for a million different reason. She was willingly giving us the precious life that she created and we were promising her to cherish it. Our verbal agreement was to exchange photos and have some physical visits within the first year.  I was encouraged not to make any promises that I know I wouldn't keep.  Let me tell you, that is VERY hard to do when it is something you want more than anything.  Lex asked for nothing because she didn't need anything, even though I would have given her ANYTHING she requested.  The beauty of our relationship was always the trust, the unspoken trust that we established on day 1.   I honestly believe that as much as Finley was a perfect fit for our family, so was Lex. A piece of that puzzle I struggled to imagine back in that empty nursery.

 

Open Adoption can be such a beautiful thing when all parties involved are healthy enough to handle this type of relationship.  It is difficult no matter the circumstance.  I've never felt threatened by Finley's Birth-family because we've always maintained a mutual respect and gratitude. They've never commented on the decisions we've made as parents, there are clear boundaries that are honored.  Even when we all have our issues, we communicate through them.  Ultimately, we share the same desire for Finley to know she was loved through the placement process and is continuously and uncondtionally loved by her Birth-family.  I believe that this is the foundation for a successful open adoption.  Lex chose to place Finley in our Lives, and that is the sole reason we are Finley's Parents.  We will always celebrate Birth-Mothers day with her, for as long as she is comfortable doing so.     

 

As I sit here writing this blog, I think about all of the women who spend their nights sitting in empty nurseries.  I can't tell you what having family and friend's support means to someone in this place. My prayer is for you to know you are loved and you are worthy. I pray that you know when the time comes, that your pain and suffering will be flushed away and overpowered by joy. I love the Bible Verse about joy coming in the morning, because I always felt that I was the saddest and the emptiest at night.  I pray the nights be short for you.  I pray that your Journey to Motherhood is an inspiring one.  Lastly, I pray that you share your story with other's to bring them comfort during this time.   
With Love, Christina   
 

 

 

 

 

 

 

 

the #SHOWYOURSCAR campaign

Finley has recently shown great interest in the scar on her back.  The 4 inch scar she has along her spine is from the SDR Operation she had in St. Louis with Dr. Park, this past October.  The SDR is performed by a Nuerologist, and Dr. Park is the best surgeon in the world for this procedure.  She says that she got her scar from, "The doctors I flew on a plane to see."

 

She's 3, so it's really cute to see her light up when she talks about it.  She even says it makes her strong. (I have to hold back tears every. single. time.) Her enthusiasm is what turns this scar into a symbol. A symbol which signifies that, although we may experience pain - we have the opportunity to see beauty in the victory. We’re teaming up with @YouCaring to help launch the 'Show Your Scar' campaign. Whether you’ve overcome a hardship that left a visible or invisible scar, PLEASE - I encourage you to share your story publicly. Show others how overcoming adversity - from mental illness to physical disability or disease - is what shapes us into the people we are today. YOU can help us by Sharing your Story.

 

IF you choose to SHARE your story, and I HOPE you do - You will have the chance to receive $500 that can go toward any YouCaring fundraiser of your choice!  ( If you chose ours, this would cover the cost for 2 months of Therapy for Finley.)  What a great way to SHARE your story to HELP others, AND then be able to give someone this GIFT. Gosh, I love YOUCARING so much!  This accounts for posts on Instagram + Twitter only. 

To enter this special YOUCARING offer:

1)  Your account must be on PUBLIC, or followed by @Youcaring. 

2) TAG @YOUCARING on the POST CAPTION and tap-tagged in the PIC

3) Use the HASHTAG #ShowYourScar.   

 

TO READ MORE ABOUT THE #SHOWYOURSCARCAMPAIGN    ((click here))

#ShowYourScar #finleysSDRstory