Sloanie Strong- Sloan's battle with Biliary Atresia

09/08/2021

Today is Sloan & Steven’s FOURTH transplant anniversary!!!

It is incredible how fast the years have flown and simply amazing to watch Sloan grow into the beautiful, funny, social, and strong-willed girl she is today.

Birthdays and milestones mean so much more when there was a time you didn’t know if there would actually be any more. Every time I look at Sloan I am reminded God listens, miracles happen, there are incredibly selfless people in this world and that when some doors close others open.

We are blessed to have the incredible medical team at Boston Children's Hospital, a self-less act from her living donor Steven, and the love and support from all of you to carry Chris and I and our family forward through what was the darkest, scariest time in our lives.

Today Sloan also celebrated her Welcome Day at her preschool. Because of a donor she is able to have another “first day”. She’s able to play and make new friends. And none of that would be possible without a donor. I’ve said it often and I’ll say it again. Register to be an organ donor.

Www.registerme.org

Happy liverversary sweet girl.

"stay strong through your pain
grow flowers from it
you have helped me
grow flowers out of mine so
bloom beautifully
dangerously
loudly
bloom softly
however you need
just bloom"🌿

06/24/2021

Hi friends! It’s been awhile since I’ve shared an update so I thought I’d come on quick since we are in the midst of the liver labs seesaw balance act 👎🏻👎🏻👎🏻

Sloan has been doing wonderfully since the last update in March when we went to Boston. Since then she’s turned 4(!!!!), graduated her first year of preschool, and had her first ballet recital! It was a fantastic spring and wonderful 3.5 months without a lab draw.

Yesterday I took her for labs and her liver looks great as do all the other numbers, except the level of her immunosuppression was too high. This has been stable for quite some time and we have not had to change her Prograf dose in at least a year.

Yesterday it was 7.3, well out of the goal range of 3-5 so we are back to playing with the dose to get her back in range. The problem with this is it means more frequent labs (every 1-2 weeks) 😞 prayers welcome that one dose change fixes this and she can go back to every 3-ish months of blood work!!

In positive news for my transplant family followers- Her EBV was undetected yesterday!!!! This has happened a couple times before but as we all know is super rare. EBV is the mono virus that can go haywire in transplant patients leading to a post-transplant type of lymphoma. So this is awesome news.

Thanks as always for following along. You could send up a prayer for a fellow little liver guy Amos who is at B*H too if you don’t mind!! Happy summer to you all….stay well.

03/09/2021

💚Sloan had a full day of routine tests today to check on her liver and we want to thank everyone who prayed and sent us positive thoughts, words of encouragement and vibes! They worked!

She was an absolute rockstar. She had more patience than I’ve ever seen in a 3 year old! She couldn’t eat until 10:15 am in order to be NPO for her fibroscan and ultrasound and she only asked one or two times to eat. The US took an hour to complete and she was just so, so good.

Her fibroscan was the only potential mishap in that the pictures weren’t ideal, so that was kind of frustrating. At the lab, we coincidentally ran into Isabel, our regular and favorite phlebotomist in North Dartmouth! She was in Boston getting her covid vaccine and took over and drew Sloan’s labs- which we took as a good sign, and her results were perfect 🙏🏻

The surgeons will review her US but preliminary reads are everything looks great!

Sloan and I had a nice lunch out today just her and mama. It was much needed quality time 🥰

Thank you for following our journey, thinking of us and just being a community of support and love for our Sloanie girl. It means the world! Oh and she got a well deserved cake pop once we finished at the hospital!!

10/03/2020

♻️💚🎃Happy October! This month brings attention to many diseases and diagnoses, but nearest to our heart of course is liver disease!

As many of you know, our second child, Sloan, was diagnosed with a disease called biliary atresia when she was 3.5 months old. She is now almost 3.5 years old!

What Is Biliary Atresia?
Biliary atresia is a gastrointestinal disorder in which the biliary system is closed or absent. The biliary system is the network of tiny tubular structures and ducts that drain bile from the liver to the small intestine, where it helps the digestive process.

Although it is relatively rare, biliary atresia is the most common liver disease that requires a liver transplant. On average, there is one case of biliary atresia out of every 15,000 live births worldwide. In the United States, approximately 300 new cases of biliary atresia in infants are diagnosed each year.

The cause of biliary atresia is not known. Researchers believe that auto-immune mechanisms may be partly responsible; recent research suggests that biliary atresia could be triggered by a viral infection in susceptible infants. It is also thought that there are two kinds of biliary atresia: Embryonic (fetal) and perinatal. The perinatal type is often associated with a later onset of jaundice, and may be caused by environmental factors.

What is known for certain is that biliary atresia affects only newborns; it is not hereditary; it is not contagious; it is not preventable and it IS life-threatening. Biliary atresia is not caused by anything the mother did during pregnancy. There is no cure. The only treatments are a kasai procedure (if the disease is caught early enough, which it wasn’t for Sloan) or a liver transplant.

Having now had another baby after Sloan’s liver transplant journey, we have a whole new perspective. We learned from medical professionals at my birthing hospital that Sloan’s story taught and helped guide them to pay closer attention to the direct bilirubin number. Not just the total. Our story had an impact and we pray that perhaps this helps to identify and prevent late diagnosis of liver disease in other infants. And for that we are thankful, and we won’t stop sharing our story for all those who will listen.

09/08/2020

💚♻️🙏🏻HAPPY 3RD LIVERVERSARY, SLOAN!!💚♻️🙏🏻

We are just so blessed with Sloan’s health this anniversary, in the midst of the COVID-19 pandemic especially. Her liver biopsy came back perfectly normal and we were able to decrease the amount of immunosuppression she takes, meaning her own immune system can start to take over more. 🎉🙌🏻

She had labs last week and everything looked great. Waiting to hear when they want to repeat. Nothing but celebrations going on over here!

Hope everyone is staying healthy and as sane as possible during this crazy time in history. We especially pray for transplant families in hospitals for prolonged stays at a time when the rules and physical environment have changed greatly.

A huge long distance hug to our living donor, Steven for giving us the gift of life. Xo!!! 💚💚💚

“Be strong. Be fearless. Be beautiful. And believe that anything is possible.” ✨

09/01/2020

Sloan has exciting news to share!! She became a BIG sister on Saturday, August 29th! Baby Clara was born at 10 am. 6 lbs and 7.5 oz. 19” long. 👶🏼🎀

Big brother and sister adore her!! Both Sloan and Clara have labs this week 😆 so prayers for stable bilirubin and liver function/ tacro level are welcome!!!

08/07/2020

💚💚💚Thank you for all the texts and prayers. Sloan is having a tough time today from the anesthesia with multiple vomiting episodes, groggy, weak and no appetite.

Otherwise, the procedure went fine and her labs look good 👍🏻 minus tacro which my pregnancy brain totally messed up by giving her her Prograf this morning. 🤦🏼‍♀️

We are resting with good friends in Concord and will head home soon for a low key weekend. Results of biopsy not until next week as it was routine.

# warriorgirl

08/07/2020

Please say a prayer for Sloan as she goes in for her routine 3 year post-transplant biopsy today. She’s the bravest girl I know. All the emotions being 36 weeks pregnant back in these stomping grounds, during a pandemic no less. If results are good we can lower her immunosuppression 🙏🏻🙏🏻🙏🏻 thank you!!

06/23/2020

💚 BA research update!💚 We had the pleasure of sharing our story, along with our living donor Steven, with a Albireo Pharma over the spring. What was supposed to be an in-person meeting in Boston ended up being a zoom conference due to covid-19 but it was still so encouraging to hear this company is working on a drug to help BA babies prolong the need for transplant.

We just heard their clinical trial has launched!! They are looking for families of babies diagnosed with Biliary atresia in NY state to recruit for the trial. If you know of anyone, or if you are a possible candidate, don’t hesitate to reach out to myself and I can put you in contact with those leading the trial. In the meantime, here is a link to the trial.

So happy to see progress being made and attention being paid to this rare disease!! ♻️💚

Efficacy and Safety of Odevixibat in Children With Biliary Atresia Who Have Undergone a Kasai HPE (BOLD) - Full Text View.

05/25/2020

Sloan’s labs were perfect to me!! We have a virtual appointment Thursday with her team to review! Thank you for all the prayers!!

05/22/2020

Sloan has routine labs this morning. After FOUR whole months without! That’s the longest she’s gone in her whole life, since she was diagnosed at 3.5 months old. Please send us a little prayer or well wish for positive, normal results! Wishing everyone a safe and happy Memorial Day weekend ❤️🙏🏻

04/26/2020

🎉🎈🧁Today Sloan is 3️⃣!!! We have lots to celebrate, including the fact that she is going to be a big sister late this summer!!

Every day we have with Sloan is a blessing. But when you face a reality of not knowing if your baby will see her first birthday, each year becomes just that much sweeter. We do not take a single moment with her for granted. And during this quarantine we are soaking it in. Especially the lazy mornings waking up late with my little 3 year old co-sleeper 😆

We celebrated today with lots of balloons, cupcakes (or in Sloan’s case... frosting!) some presents and singing. Her big brother has a birthday in just 4 days so the celebrating will continue through the weekend 🎉

We hope all of you are staying healthy and safe, and thank you for sending Sloan a little birthday wish! ❌⭕️❌⭕️