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Milestones and an MRI

**If you haven’t read the backstory to Penelope’s journey and why she needs an MRI and EEG, you can find more info here**

Last week was Javier’s first week back at work after a month of family leave, and my first me-and-P day began with a morning appointment at the neurologist. Penelope’s alert personality is the strongest signal that we have right now to gauge the severity of the stroke’s damage to her brain. She is smiling, responding to our voices, focusing on our faces, cooing and giving us clear signals when she is hungry, tired, or has a dirty diaper, and all of these baby milestones are signs that she is undergoing normal cognitive development for a baby her age. This is GREAT news for us, and it was a huge relief to hear her neurologist’s report confirming that she’s on the right path. While we were in the doc’s office she underwent another EEG procedure. This time she was only hooked up for 30 minutes, and I was able to hold her for the duration of the procedure. Much less traumatic than the 40+ hour EEG she underwent in the NICU! I still hate to see her with all of those wires coming off of her little head…

The EEG came back normal – cue another huge sigh of relief. The next test was the MRI, which allowed Dr. Puri to assess the stroke’s damage by comparing new images of her brain with the images that were taken during her first week of life. We scheduled an MRI for last Friday afternoon, and I dreaded it all week. Penelope is too young to be sedated, so she would have to go with the “feed and wrap” technique to keep her as still as possible in the MRI. This involved keeping her from eating or sleeping for at least 3 hours prior to her MRI, then just before the MRI I would feed her, wrap her up tightly in a swaddle, and hopefully get her into a deep sleep for the imaging. She couldn’t move during the procedure, and if she did and they were unable to capture the images, we would have to return in three weeks so she could be sedated and then get the MRI. I *really* did not want to wait for the information or have her sedated, so I was nervous about the whole process.

I decided to document the whole day via my instagram stories, so check out the video below. I was on edge all day trying to figure out if I fed her too much in the morning, if I was making her *too* tired which would turn into over-tiredness and keep her awake, how would I get her to the hospital without her falling asleep in the car, how would I know for sure when the right time was to feed her before the procedure (sometimes feeding her makes her alert and wide awake, other times she falls asleep). Meanwhile she was miserable…unable to sleep, unable to eat, basically inconsolable the entire morning. In the end, despite the MRI being 40 minutes late, she was so exhausted and had such a nice full tummy that she slept through the entire MRI and we left with the images we needed.

 

 

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Post-MRI holding the disc with all of the images of her brain!

We thought we might have to wait a week to get her results back, and certainly we expected to wait at least until Monday. On Saturday morning, Dr. Puri surprised us with Penelope’s imaging report, and it *made our weekend*. Overall, the damage has diminished and is almost nonexistent everywhere except the occipital lobe. He said that if the damage was consistent with her first MRI, it would have shown up 5x worse on the new images. The occipital lobe continues to show residual damage, but between the images and her alert personality, he (and we) are optimistic that she will continue to thrive.

This isn’t her occipital lobe – but I thought this was a cool shot from her MRI. It is both kind of neat and also a real bummer to have 200 photos of your kiddo’s brain. Neat because it’s amazing and pretty rare to get images like this of your kid, but also a bummer that it was necessary to get the images in the first place.

So what does the damage to the occipital lobe mean? Well, we know her eyes are perfectly fine. The question now is how her brain processes the images that her eyes take in. Is she missing parts of her vision? Will she be able to see color? Does she have hallucinations? Is her vision blurry? We have no idea. The really amazing thing about the brain isΒ how malleable it can be. This is especially true for babies, who are forming thousands of new neurological connections all the time. Whatever damage was done, we are hoping that her brain will learn to compensate for it and form new pathways around the damage. We’ve been working on some exercises with her to strengthen new pathways…but I’ll post about that another time. We go to the geneticist tomorrow, so we’re hoping for a good report there as well.

Oh, one final bit of good news! Because the EEG was uneventful, they lowered the dose of one of her anti-seizure medications, and she will be completely off of it by the end of the month. So hopefully we will only be dealing with one medication as long as everything continues to go well!! Thank you again for keeping P in your prayers and for reaching out to us – she’s so loved!

8 thoughts on “Milestones and an MRI Leave a comment

  1. Great story!

    On Wed, Nov 8, 2017 at 12:26 PM Los Rodriguez Life wrote:

    > Leslie posted: “**If you haven’t read the backstory to Penelope’s journey > and why she needs an MRI and EEG, you can find more info here** Last week > was Javier’s first week back at work after a month of family leave, and my > first me-and-P day began with a morning appoint” >

  2. She is absolutely beautiful, and this news sounds wonderful. Thanks for writing about her so that all of us who love you and your family know what’s happening!

  3. Leslie- I’m not sure if my Dad has shared that we have had similar experiences with our middle child who was ultimately (after 2 1/2 years) diagnosed with Focal Partial Epilepsy with a left temporal and left hemispheric focus. The pain a parent feels for a child who is in ill health is inexplicable. I understand how cathartic it is to process it all in words and give her story a voice.

    Penelope is a warrior already; so strong and brave. What a lucky little girl to be blessed with a proactive, nurturing, and well-informed Mama.

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