Results tagged “prayer update medical” from Arielle
Hello. Hard to believe it's been about two months since our last update,
and that Arielle is three months now. Since most people want photos,
here's one of the first capturing her smile (hello adorable!!!):
We've received mixed results since our last update, but good definitely outweighs bad. We'll start with the tough stuff. The most recent MRI revealed another portion of Arielle's brain didn't form properly: the right cerebellum, which is responsible for things like controlling movement and processing language. This now means two different parts of her brain didn't form properly because of PHACE Syndrome, the rare disorder linking a large, infantile hemangioma (abnormal mass of capillaries - usually of the face), and birth defects of the brain, heart, arteries, eyes and/or skin.
As was the case with the other brain defect (complete agenesis of the corpus callosum), it will likely be quite some time before we understand what this means for Arielle, her growth, development and future. Translation: please continue to keep her in your thoughts and prayers!
In the short-term, we've been attempting to stop the growth of the hemangioma on her face. The picture above does the best job of explaining what a hemangioma looks like. When Arielle was born, there were only faint pink marks in areas that quickly exploded into the large, red masses that have now taken over the better part of a quadrant of her sweet little face. In an attempt to prevent any long-lasting facial deformities and worsening impact on her right eye, Arielle went on steroids about two months ago. Thus far, the medicine seems to have helped slow the progress, but has yet to fully put the brakes on it.
One of the best pieces of news is that the echocardiogram determined Arielle's heart is structurally and functionally normal. Yippeee! And, another test revealed the bulk of her right optic nerve formed, meaning there may be hope for some sight in the eye that was previously diagnosed with permanent blindness.
As many tests as she has endured, many more are in store for her future, and we're beginning to understand regular tests and monitoring are going to be a part of our family's life. Arielle still needs an MRA (magnetic resonance angiography), a special type of MRI test designed to evaluate arteries, veins, and the flowing blood within them. Another MRI focusing on the eye area should tell us more about what's possible in terms of restoring any vision to her right eye. Soon, we travel back to Texas Children's Medical Center in Houston to visit one of the leading doctors specializing in PHACE Syndrome, and are eager to receive any new insight. We also plan on attending the inaugural PHACE conference for the condition in November.
We're extremely pleased to report that thus far, Arielle has met all of the developmental milestones on time, and even early in some cases. She regularly coos and smiles, and has taken a particular liking to: FOOD, music, FOOD, being outside, FOOD, bright colored toys, FOOD, and Big Bird. Did we mention the girl likes to eat?
Thank you for caring about our family!
- Mary Alice, Travis and Baby Arielle
We've received mixed results since our last update, but good definitely outweighs bad. We'll start with the tough stuff. The most recent MRI revealed another portion of Arielle's brain didn't form properly: the right cerebellum, which is responsible for things like controlling movement and processing language. This now means two different parts of her brain didn't form properly because of PHACE Syndrome, the rare disorder linking a large, infantile hemangioma (abnormal mass of capillaries - usually of the face), and birth defects of the brain, heart, arteries, eyes and/or skin.
As was the case with the other brain defect (complete agenesis of the corpus callosum), it will likely be quite some time before we understand what this means for Arielle, her growth, development and future. Translation: please continue to keep her in your thoughts and prayers!
In the short-term, we've been attempting to stop the growth of the hemangioma on her face. The picture above does the best job of explaining what a hemangioma looks like. When Arielle was born, there were only faint pink marks in areas that quickly exploded into the large, red masses that have now taken over the better part of a quadrant of her sweet little face. In an attempt to prevent any long-lasting facial deformities and worsening impact on her right eye, Arielle went on steroids about two months ago. Thus far, the medicine seems to have helped slow the progress, but has yet to fully put the brakes on it.
One of the best pieces of news is that the echocardiogram determined Arielle's heart is structurally and functionally normal. Yippeee! And, another test revealed the bulk of her right optic nerve formed, meaning there may be hope for some sight in the eye that was previously diagnosed with permanent blindness.
As many tests as she has endured, many more are in store for her future, and we're beginning to understand regular tests and monitoring are going to be a part of our family's life. Arielle still needs an MRA (magnetic resonance angiography), a special type of MRI test designed to evaluate arteries, veins, and the flowing blood within them. Another MRI focusing on the eye area should tell us more about what's possible in terms of restoring any vision to her right eye. Soon, we travel back to Texas Children's Medical Center in Houston to visit one of the leading doctors specializing in PHACE Syndrome, and are eager to receive any new insight. We also plan on attending the inaugural PHACE conference for the condition in November.
We're extremely pleased to report that thus far, Arielle has met all of the developmental milestones on time, and even early in some cases. She regularly coos and smiles, and has taken a particular liking to: FOOD, music, FOOD, being outside, FOOD, bright colored toys, FOOD, and Big Bird. Did we mention the girl likes to eat?
Thank you for caring about our family!
- Mary Alice, Travis and Baby Arielle
"The greatest wealth is health."
-- Virgil
The quote rang particularly true for us yesterday, when our unborn baby was diagnosed with hydrocephalus. For those as unfamiliar with the condition as we were, it refers to a build up of fluid in the brain. Normally, the fluid drains into the spinal cord, but in our baby's case, remains trapped in the lateral ventricles. That, in turn, causes pressure on the brain and an enlarged head, symptoms our baby shows.
What does it mean?
It means many things as we face an uncertain and frightening future. Most importantly, it means all three of us would very much appreciate being kept in your thoughts and prayers at this time. Initially, Travis and I wanted to wait to find out the gender of our child until birth. It was such a struggle for us to conceive, we weren't concerned with "girl" or "boy" or "pink" or "blue" - just a healthy child. Since the diagnosis, we decided we wanted people to be able to pray for our baby by name. We are having a girl, her name is Arielle, and her sonogram photo is attached. We have found two meanings for the name: Lion of God and ethereal. The combination sums up well the balance of strength, determination, and grace our entire family will need as we cope with the situation at hand.
Medically, what's in store?
The doctor told us to prepare for a long roller coaster ride with a completely unpredictable ending. Worst case: the pressure builds, and Arielle dies before or shortly after she is born. Best case: the potential for a normal life. Everything in between is also on the table: surgeries, vision problems, learning disabilities, physical handicaps, etc. The outcome will depend on how the fluid behaves, on its own or through medical intervention. Naturally our prayer is for whatever is causing the build up to miraculously relieve itself, or for medical procedures to achieve the same result.
Mary Alice was immediately put through a series of tests yesterday that will hopefully help the doctors gain a clearer picture of the situation. To us laymen, the diagnosis and prognosis seems like a giant puzzle shattered into millions of tiny pieces. Every piece helps rule something in or out. Once the test results arrive, we will go to a specialized center in Houston, where they will perform an MRI, and hopefully be able to link more puzzle pieces together for us. That will be in about three to four weeks.
On a different front, Mary Alice's blood condition that prevents her from properly absorbing iron has been causing minor challenges from the beginning - primarily weakness and fatigue. Yesterday, her hematologist made adjustments to her treatment that we hope make more of a difference. We also ask for prayers on that front to help her body become as strong as possible to best support, carry and care for Arielle.
Future communication
It is with heaviest and humblest hearts we share this information with you. For those of you interesting in following our journey, Travis will be setting up a special blog page here on our family website where we will post information as it becomes available. We hope to have something up in the next few days.
We have already found comfort in our immediate family members, which are encircling us with their greatest love and support. We thank all of you for your friendship, and keeping us in your thoughts and prayers at this time.
- Travis, Mary Alice and Baby Arielle
The quote rang particularly true for us yesterday, when our unborn baby was diagnosed with hydrocephalus. For those as unfamiliar with the condition as we were, it refers to a build up of fluid in the brain. Normally, the fluid drains into the spinal cord, but in our baby's case, remains trapped in the lateral ventricles. That, in turn, causes pressure on the brain and an enlarged head, symptoms our baby shows.
What does it mean?
It means many things as we face an uncertain and frightening future. Most importantly, it means all three of us would very much appreciate being kept in your thoughts and prayers at this time. Initially, Travis and I wanted to wait to find out the gender of our child until birth. It was such a struggle for us to conceive, we weren't concerned with "girl" or "boy" or "pink" or "blue" - just a healthy child. Since the diagnosis, we decided we wanted people to be able to pray for our baby by name. We are having a girl, her name is Arielle, and her sonogram photo is attached. We have found two meanings for the name: Lion of God and ethereal. The combination sums up well the balance of strength, determination, and grace our entire family will need as we cope with the situation at hand.
Medically, what's in store?
The doctor told us to prepare for a long roller coaster ride with a completely unpredictable ending. Worst case: the pressure builds, and Arielle dies before or shortly after she is born. Best case: the potential for a normal life. Everything in between is also on the table: surgeries, vision problems, learning disabilities, physical handicaps, etc. The outcome will depend on how the fluid behaves, on its own or through medical intervention. Naturally our prayer is for whatever is causing the build up to miraculously relieve itself, or for medical procedures to achieve the same result.
Mary Alice was immediately put through a series of tests yesterday that will hopefully help the doctors gain a clearer picture of the situation. To us laymen, the diagnosis and prognosis seems like a giant puzzle shattered into millions of tiny pieces. Every piece helps rule something in or out. Once the test results arrive, we will go to a specialized center in Houston, where they will perform an MRI, and hopefully be able to link more puzzle pieces together for us. That will be in about three to four weeks.
On a different front, Mary Alice's blood condition that prevents her from properly absorbing iron has been causing minor challenges from the beginning - primarily weakness and fatigue. Yesterday, her hematologist made adjustments to her treatment that we hope make more of a difference. We also ask for prayers on that front to help her body become as strong as possible to best support, carry and care for Arielle.
Future communication
It is with heaviest and humblest hearts we share this information with you. For those of you interesting in following our journey, Travis will be setting up a special blog page here on our family website where we will post information as it becomes available. We hope to have something up in the next few days.
We have already found comfort in our immediate family members, which are encircling us with their greatest love and support. We thank all of you for your friendship, and keeping us in your thoughts and prayers at this time.
- Travis, Mary Alice and Baby Arielle
