March is Traumatic Brain Injury Awareness Month. Something you don’t know, until you do. Some days this life we are living feels normal, and some days it still feels unreal- like a nightmare. I recently had to fill out paperwork for Americans with Disabilities Act for Mirra’s new daycare. Things like that just haven’t seemed to sink in yet. 

Anyway, it’s been a little while since I posted an update! I had been waiting until this past week because it would be the “end” of the recent string of follow up appointments. On March 2nd Mirra had both her follow up ophthalmology appointment AND her 6th month check up. Her ophthalmology appointment went mostly well. Almost all of the blood is gone behind her eye except for a small blood clot behind each one. She is tracking great and it is obvious she is seeing with intent. However, her vision is

poor and it appears she has a astigmatism in one eye. If this doesn’t improve when we go back in July we will be looking at getting her glasses. The hardest part of that appointment was hearing that she is still at a risk for her retinas to detach. He was still able to see where the jelly had separated from the eye. We are remaining hopeful that this won’t happen. Since this appointment we have started to notice her left eye wanting to look inward at times when it shouldn’t, so that is something we are following up with her ophthalmologist about and will continue to monitor. 

Her 6 month check up went well! She is growing and checking off milestone boxes as she should. We got the okay to start solid foods. She has been struggling with this though. It may take time for her since she had oral aversion due to being intubated twice. Things being put in her mouth without her being the one to put them there can be a struggle but we are making progress! I know starting solid foods can be a struggle for any baby who is just being introduced so we try to fight that line of what’s “normal” behavior and what is a response to the trauma. 

This past week we were scheduled for a repeat MRI scan by her Neurosurgeon (Monday)and a follow up appointment with her Neurologist (Wednesday). We were really looking forward to the scan so we could find out how much, if any, blood remained on her brain and also to see if we could see any physical healing. When we arrived for the appointment we learned that it had been canceled. We were never notified so our neurologist who we met with on Wednesday told us to call and have it rescheduled and if they for some reason didn’t want to then she would order one herself! My guess is they thought we would still be in New Orleans? Who knows. So hopefully we will be getting that brain scan rescheduled soon.

Our Neurologist appointment went well. She is happy with our plan to work with Early Access to monitor her development in all areas including physical and occupational therapies. We talked about the recent seizure she had on February 28th that landed us in the ER. They think she may have “out grown” her current Keppra dose since the dose is based on weight. And while the dose being too little may have caused the seizure, the fact that she had another one was NOT “normal” at this point. So that was a little concerning. We are still hoping this is something she can grow out of as her brain heals. If she can make it 2 years seizure free then we can talk about coming off the medicine. 🤞

She has started a new daycare and that process was very stressful for us. We were able to find a center that has cameras that livestream. So at any point in our day we can watch her from wherever we are. That has been the biggest piece of mind. She seems to be doing well and we feel like she is getting plenty of exposure to different activities and other babies 🥰 They also use an app that updates us each bottle, diaper, nap, and sends us pictures of her everyday. We are able to message the caretakers via the app and they respond very quickly. This has been a tough transition but thanks to all of these perks it has helped to lessen our anxiety! 

And last but not least, our home hyperbaric chamber has been delivered!! We are working on getting that all set up so we can continue diving under Dr. Harch’s supervision! We are so excited that this was even a possibility and we have your donations to thank for that!! 

Overall, Mirra is making progress everyday. The two biggest areas of concern right now are her vision & possible retina detachment and seizures. We are remaining positive and pray for her healing every day. Mirra has officially spent 1/2 of her young life battling this horrific battle that she NEVER should have had to battle in the first place. Only time will tell what other areas of concern will pop up (if any at all 🤞🤞🤞). But no matter what, she will overcome it.

Thanks to everyone keeping Mirra in your prayers ♥️

#MIRRAcle

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(All donations are going towards medical bills, hyperbaric treatment, *HOME HYPERBARIC CHAMBER, and any unforeseen medical expenses/equipment.)