Vivi's Village

01/31/2024

Update on Vivian!

Vivian is currently healthy and strong. Thankfully, she has not had to fight off any infections. We continue to work with her team to build a strong immune system, and it's working.

Vivian saw her GI doctor, for continued digestive and intestine issues. He had mentioned wanting her to do ANOTHER Cystic Fibrosis sweat test, after the holidays. During the appointment, her Dr. changed his mind and went ahead and ordered genetic testing. He mentioned another sweat test is counterproductive bc she has 2 previous test, where she measured in the "Intermediate CysticFibrosis" range.

Vivian getting the genetic testing is a huge deal! We have been wanting this test for the past year. The results take up to 3 months, but this is a step in the right direction.

Vivi's village continues to show up for her. She is growing and continues to live life like she has no limits!

12/31/2023

We continued the tradition of visiting Santurio de Chimayo. This is the 3rd year we do this. Since we began this tradition, Vivian's health has improved and we will rub this healing sand on her. The story of this church and sand is truly unique and remarkable.

We are thankful for her progress, despite continued inconclusive testing.

In January, Vivian will go back to the children's hospital for more testing, on her immune system and for Cystic Fibrosis.

Vivian is a fighter, and we have to believe these visits to this very special church is having some sort of impact. Because faith is what we have in situations like this. Vivian is worth fighting for, her spirit and resilience is one in a million.

We are gonna need good vibes going into January, these tests are gonna give us very important answers to help her continue to live her best life!

Vivi's village is growing and strong! We feel the support and love, and that impacts her in the most positive ways.

💜🤍💜🤍

10/16/2023

It's amazing what time can do...time can heal the sick and mend broken hearts.

It's been two years since we went through a cancer scare with Vivian. Her treatment team, family and friends have fought with her on helping her overcome her challenges. And this life still is very challenging for her, but dang, this lil 37 lb girl is a fighter. The difference between then and now, is remarkable!

12/10/2022

Grit (noun): firmness of mind or spirit : unyielding courage in the face of hardship or danger (Merriam-Webster)

Courage and determination despite difficulty (Cambridge)

********************************************

(These pictures are just of this years struggles)

We have finally got a diagnosis of Cystic Fibrosis (in addition to her severe Asthma). Now that a treatment roadway is in place we now have a clear path to fight her illness.

The health journey has been long, devastating and exhausting. Vivian has had her struggles and still has the personality of a girl who is happy and strong-willed and determined to live the best life. She is the definition of GRIT.

12/02/2022

It's been awhile since there has been an update about Miss Vivi.

Vivi is still her sassy & fun, almost 3 year old, self.

Vivi has dealt with a bout of the flu which took her to the ER. Since recovering from the flu, we noticed a nagging cough and difficulty breathing. When we met with her pediatrician, she was concerned and mentioned that her lungs seem to be getting worse.

Big news from visit with Vivi's pediatrician:

* Vivi is being tested for Cystic Fibrosis

* Vivi must wear a vest to cover her chest and to help keep her lungs warm. (Doesn't she look so cute in her vest?!)

* Vivi will continue to struggle with her cough and we are just trying to manage her cough

* Vivi was referred to a new pediatric pulmonologist, in hopes of getting a more aggressive treatment option

Vivi continues to get lots of love and support in her journey. We are so thankful for everybody's love and support.

10/27/2022

Vivi's village goes beyond family & friends.

Vivi has many doctors, therapists and specialists working with her to improve in all her challenges.

Today Vivi saw her OT, who helps her with muscle strength. I love and appreciate the effort made to help these kids feel celebrated and special. Today's theme was everything Halloween 🎃

09/13/2022

Today was a big day for Vivi...she saw her Dr and she told Vivi she could go back to school!

Big changes for her though:

*Vivi has been diagnosed with Severe Asthma (prior diagnoses was Mild Asthma)

*Dr gave us the heads up, she will likely be hospitalized every time she gets a virus, her lungs are just too weak to keep her oxygen levels up👎

*Dr changed her maintenance medication to a more aggressive medication in an inhaler form

*Vivian will require her rescue medication prior to exercising

*Oxygen may be prescribed if she cannot maintain 90% or more saturation levels 🥺🥺🥺

*Vivi will continue to heal for up to 3 weeks from RSV

Vivi looks strong and healthy and her good spirits are from those around her who love and are fighting for her.

Vivi's village is very supporting and love and prayers are felt and heard every time she has flare ups.

This journey is a marathon and not for the faint of heart. We sometimes need to stop and think about how amazing our bodies are and being thankful for simply breathing.💜🤍💜🤍

07/25/2022

💜🤍💜🤍

What measures intelligence?

Is it being able to remember things?
Is it being able to perform well in certain settings?
Maybe it is being able to overcome and be resilient, despite unfavorable conditions?

What we do know is, Vivian has developed and established herself as a positive and capable little human being, despite so many obstacles. The idea of breathing is difficult for her, yet that doesn't stop her from running and playing and including herself in activities.

Under what conditions do you not prevail? Is that a choice we make to NOT overcome? Because children seem to be the most resilient when they are semi-unaware of the ability to resist.

This supports that children will likely trust their parent/guardian/caregiver, even when those entrusted individuals do not have the child's best intentions. This is the prime example of attachment.

Today, another appointment was made with another specialist.

Her list of specialists keeps growing....

Speech pathologist
Occupational therapist
Pulmonologist
Now she has a Cardiologist
(We are also looking at an audiologist)

We still scratch our heads as to why she is still suffering, even if she seems to be healthy some days. We still do not know why or what is causing all of these difficulties. But we choose to love and cherish ALL the days we have with her.

One thing is for sure, as her parents, we consult A LOT with people about the how's/why's/what's regarding her health...this is what it means when we say "it takes a village."

Vivi's village is beyond amazing, she will know that forever, she has so many that love and adore her.

A million thanks is never enough💜🤍💜🤍

07/25/2022

What measures intelligence?

Is it being able to remember things?
Is it being able to perform well in certain settings?
Maybe it is being able to overcome and be resilient, despite unfavorable conditions?

What we do know is, Vivian has developed and established herself as a positive and capable little human being, despite so many obstacles. The idea of breathing is difficult for her, yet that doesn't stop her from running and playing and including herself in activities.

Under what conditions do you not prevail? Is that a choice we make to NOT overcome? Because children seem to be the most resilient when they are semi-unaware of the ability to resist.

This supports that children will likely trust their parent/guardian/caregiver, even when those entrusted individuals do not have the child's best intentions. This is the prime example of attachment.

Today, another appointment was made with another specialist.

Her list of specialists keeps growing....

Speech pathologist
Occupational therapist
Pulmonologist
Now she has a Cardiologist
(We are also looking at an audiologist)

We still scratch our heads as to why she is still suffering, even if she seems to be healthy some days. We still do not know why or what is causing all of these difficulties. But we choose to love and cherish ALL the days we have with her.

One thing is for sure, as her parents, we consult A LOT with people about the how's/why's/what's regarding her health...this is what it means when we say "it takes a village."

Vivi's village is beyond amazing, she will know that forever, she has so many that love and adore her.

A million thanks is never enough💜🤍💜🤍

07/01/2022

It's been a year since Vivian's health journey began.

One year ago she was hospitalized with pneumonia and with more questions than answers.

In that one year, Vivian has developed a fierce personality, sometimes difficult to manage, but then again, when she has a war inside her own body, what other response would we want her to have?

This little human has overcome 4 bouts of pneumonia, an Asthma diagnosis, a cancer scare and countless tests.

Her health has continued to improve and we are cautiously optimistic that she has seen the worse.