Support Registry Update

Not the news we wanted

In support of
Addison Stavar
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Addison had an MRI and an MRV this morning and the fluid in her brain is much more and worse than it was four weeks ago. So much so that it is leaking into the gray matter of her brain. We were told she will need surgery and will require a brain shunt for the remainder of her life. Gut wrenching to say the least. This was never discussed as a possibility  and we were truly feeling like we were out of the woods. Effectively the shunt will stabilize the pressure in her brain. My understanding is there is a valve where they can change the settings as to what is stabilizing for her. It will be self draining and will drain into her belly. Her body will absorb the cerebral fluid and she will urinate it out. We were told this absolutely could positively impact her recovery- pressure like this can cause agitation, headaches, discomfort etc but we were also told sometimes it doesn’t impact recovery. As with everything else with brain injuries we are learning, results vary. We are hoping the surgery will be Friday. It is a standard procedure for the neurosurgery team. Comforting, I suppose. If she were outpatient, she would be sent home the following day, so there won’t be a long recovery. We are hoping this will not impact inpatient rehab but we’re told there have been times where the patient is sent under care under neurosurgery and then has to get back on the waitlist for inpatient. Addison will never be allowed to join the military or become a pilot. I wasn’t concerned about either of those possibilities. And people with brain shunts lead very normal lives and can even go scuba diving. 

In spite of the shift, Addison has been making so many new noises and hums since yesterday. One of her therapists said she tried to say no and her speech therapist heard her say three different consonant sounds. She continues to giggle constantly at every single thing Andrew does. She got her collar off yesterday, and as expected she seems to be even more herself than she was before. The juxtaposition of what we are experiencing with her and the news we were given is simultaneously challenging and hopeful. Please pray for peace for Kyle and I, comfort for Addison, swift recovery, guided hands during surgery, that this would help her recovery, that I would be able to focus on the fact that she can lead a normal life and not the fact that she’s been given a life sentence with the shunt, that inpatient rehab is not impacted by the surgery, that there are no complications with the surgery. Continue to pray for miraculous healing. I saw four teenage girls eating pizza today, and I pray that she will get to do that and chat with her girlfriends as a teen and many years beyond. 

Kyle and I also got to attend a ceremony for the officer who responded on the scene of the accident tonight. We found out this afternoon it was occurring at Bee Cave City Hall. The officer was awarded with a life saving award, and I got to give him his award. He responded to the scene in just over a minute and did CPR for three minutes until EMS arrived. He has visited Addison in the hospital more than once and continues to check in with Kyle. 

Today was truly a rollercoaster. 

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Comments

Maruch

Ahhhhhh. We are soft hugging tight—Addison, you, Britt and Kyle and little Andrew. Praying continuously on all good coming to Addison and you her family. And that you feel Our LIRD holding you close.
  • 6 months ago

Benbownancy

Praying for you all CONSTANTLY!
  • 6 months ago

Jimmyb Toss

Addison is due for a med bed it is alien technology that is on the control, disposition and is a free technology. There are four states where it will be released Florida is one state Texas is another state - children will take priority those that are in need physically - so you do not have to be concerned about the brain shunt for the rest of her life - I see where the med beds are to be released to the public on June 21, 2025 and available - they will replace hospitals - there is this information on the Telegram app I am looking at getting a scheduled appointment for an appointment when I go to the Redemption Center - this is likely all new to you folks but I have been in the med bed phenomenon for about 8 years now- if I can be of further assistance please let me know PS(: you are called a “normie “ by we telegram folks so this is all foreign to you folks
  • 6 months ago

Lauren Blake

Britt- we have gone through a few things medically with one of our boys. Is there a less permanent option for the brain fluid? I know it’s gotten progressively worse over 4 weeks but what if relieved the once in a less permanent option, you may not need something so permanent? Just my gut thought as I read through your post. I think a more temporary fix to monitor the situation is more appropriate than something more permanent? Praying for your beautiful girl and for wisdom for you guys.

Here is what chat gpt suggests
Endoscopic Third Ventriculostomy (ETV)
What it is: A minimally invasive surgical procedure where a small hole is made in the floor of the third ventricle to allow CSF to flow freely to areas where it can be absorbed.
When it's used: This is most commonly used for obstructive hydrocephalus, where a blockage in the brain’s ventricular system prevents normal CSF flow.
Benefits: It avoids the need for a long-term device like a shunt. The success rate can be high for certain types of hydrocephalus.
2. External Ventricular Drain (EVD)
What it is: A temporary solution where a catheter is inserted into the brain's ventricles to drain excess fluid.
When it's used: Typically used in emergency situations or as a temporary measure to relieve pressure until a more permanent solution (like a shunt or ETV) can be implemented.
Benefits: Offers immediate relief from pressure, but it requires close monitoring and care to avoid complications like infection.
3. Aventricular Shunting Techniques
What it is: Alternative devices like the Lumboperitoneal (LP) shunt or the ventriculoatrial (VA) shunt, which might be considered when traditional VP shunting is problematic due to infection or other complications.
When it's used: These might be used when there’s a complication or failure of a VP shunt or when a VP shunt is not appropriate.
Benefits: These can sometimes be easier to maintain depending on the patient's anatomy and needs.
4. Medical Management and Observation
What it is: In some cases, especially for mild hydrocephalus, doctors may suggest regular monitoring with MRI or CT scans without immediate intervention, particularly if the symptoms are not severe.
When it's used: This approach can work for patients whose symptoms are mild and who are not showing signs of progressive neurological decline.
Benefits: Non-invasive and doesn’t involve surgery or implantation of a device.
  • 6 months ago

Deb Flores

Oh my friend, what a day! Glad you were able to go to the ceremony and that Addison is more herself without the collar. It was such a delight to see her w/Andrew and hear her giggle. Praying for miraculous healing and all of the above! 🙏🏼❤️
  • 6 months ago

0107pdaa

God is the great physician. He will guide the hands of the surgeons and all of the other medical team. We are praying for miracles and the peace that passes all understanding. Love being sent your way.
  • 6 months ago

Karen Moss

Keeping all of you in our prayers🙏
  • 6 months ago

Cherie Demetri

Praying for your precious Addison. Praising God that he has brought her this far and that no matter what trials come up, HE IS GREATER. Prayers continue for healing and that you all would feel God holding you close through this.
  • 6 months ago

Kathly Marty

Oh Nancy this is sad on one hand but from what you wrote the positives out way this negative. Praying everyday for this beautiful child
  • 6 months ago

Melissa Harris

You and your family are continually in my prayers.
  • 6 months ago

Christian Flores

Thank you for the update. Praying. That officer is a hero to have responded so quickly and knowing what to do.
  • 6 months ago

Robin Johnston

Hang in there - you guys have so many of us out here, thinking and praying for you every day!
  • 6 months ago

Pam Swingley

I second Jimmyb re: med beds. It is really advanced tech from alien civilizations. It is true, it is here and it is for her.
  • 6 months ago

Karen Swanson

Prayers and huge hugs to your beautiful family! Bob and were tearing up as we read about that heroic officer being there so quickly and visiting Addison! So glad the collar has come off and love hearing that she’s laughing and becoming like herself again. We lift you all up in prayer for a miraculous procedure and a positive outcome for sweet Addison!♥️🙏🏻
  • 6 months ago

Brandon Knicely

We’re praying continually for Addison! Prayers for her full recovery and for peace and joy in the midst of a very difficult time. We’re in the middle of a move but are with you in spirit. May the miraculous God we serve show himself as the great healer and comforter. Hugs!
  • 6 months ago