First, we can’t thank you all enough for all your love and support. Your love for our girl is on full display, from texts, to special packages, and Door Dash gift cards, your thoughtfulness and care for us has been tremendous. As we approach the Christmas holiday, we are comforted to know we have a village behind us, rooting for our family, and we are incredibly grateful.

Since our last update, there have been some developments. When we were referred to UCSF Children’s Hospital, we were focused on the potential for Brinley to have Retinoblastoma in her right eye. With that as the driver, they performed an eye exam and MRI of Brinley’s brain, eyes and ears on Wednesday 12/11/24.   We learned rather quickly from the eye exam that it was not likely there were any tumors in her right eye, and that we could effectively rule out the potential for Retinoblastoma. From the results of the MRI, it was observed that her right eye is smaller than the left eye and there are some other abnormalities such as retinal detachment. Our next steps are to meet with a specialist at Kaiser who focuses on retinal detachment in infants. We have the appointment scheduled for January 2025. If there is any sight in her right eye, it is very minimal. It seems so far that if it is possible to restore any vision in that eye, it would be incredibly complex and involve multiple surgeries.

What we were not expecting were additional findings from the MRI images.  We are saddened to learn that the MRI report describes some developmental abnormalities in her brain, particularly affecting the corpus collosum, ventricles, and brain surface. These findings could be linked to certain neurological conditions, which can be better understood with genetic testing. The good news is that the findings don’t show any immediate life-threatening issues like bleeding or major blockages in the blood vessels. These abnormal findings indicate that Brinley has what is described as Cerebral Dysgenesis, where her brain did not develop as it should have in the womb.

We have been working diligently with our Pediatrician at Kaiser (who is a rockstar!) to address these findings. The best path forward is to continue our pursuit of genetic testing. We went earlier this week for Brinley to have her blood drawn, and we expect the first round of genetic testing results in a few weeks.

We understand that these findings seem to be significant and Brinley will have a challenging road ahead, but it is impossible to predict how exactly these findings will impact her development. Our pediatrician reminded us yesterday that the brain works in mysterious ways, and it is too early to assume that these MRI findings will yield a specific diagnoses or cause. The genetic testing will help guide our approach to how we can support Brinley’s development, and we are hopeful for the future.   

While this news has been incredibly scary, we are trying our best to embrace every positive. Some of the recent developments that are warming our heart are that she is beginning to smile, and interact with us. She is finding her hands, and it is fun to watch her gaze at a light we installed in her nursey that broadcasts the aurora borealis and stars on the ceiling. Since she will be very visual with her hearing loss, we are installing fun wallpaper in her nursery so she can have comfort sitting beneath the trees of a woodland forest. She also has been very vocal and has been making the cutest noises and squeaks, it is adorable.

One day at a time. One diagnosis at a time. And one poopy diaper at a time.

Happy Holidays!

With love,

Keith, Lauren, and Brinley