After Surgery

Before Surgery:IMG_9822sm

After surgery:IMG_9835

This is just an update for all our friends and family who aren’t getting info from our Facebook connections spreading news on our behalf. It’s been a blur of a week since Sophie’s surgery and we are beyond exhausted. First, the good news: the surgeon was able to resect approximately 70% of the tumor! Wow! So much better than we hoped for! And the other good news: Sophie recovered very quickly and was able to be discharged just a few days after her surgery. This seems crazy- I mean, her skull was cut open with a saw. Important brain tissue and nerves were majorly irritated. And she’s sitting up and feeding herself and talking and ready to go home??? Simply amazing.

Here is my friend Jill visiting Sophie and reading Thomas the Tank Engine books to her nonstop to keep her calm while I ate a delicious healthy dinner courtesy of my friend Kat who also stopped by. Thank goodness for my amazing friends.IMG_9885smThis is just 24 hours later. She went from unable to turn her own head in bed to sitting up in a bumbo chair! She doesn’t look particularly happy but that is mostly thanks to the high steroids she’s on and her discovery that her “eyes not working” 😦
IMG_9900smThe not-so-good news: the consequences of surgery. Both Sophie’s eyes were affected. The right one has beating nystagmus (vibrates right to left) that is slowly improving, and the left is affected by 6th cranial nerve palsy. This makes her have double vision. We are hopeful that with time and treatment her vision will be restored but it could take anywhere from a few months to a year or possibly eye surgery. And most difficult of all, Sophie has serious cerebellar issues. She has no idea where her body is in space. Her head is constantly bobbing around and she falls over when seated unless she is propped and supported. She can scoot on her bottom a few feet towards something she wants, but not reliably and it usually ends in a face-plant. So she basically has no independent mobility. Both arms shake up and down when she tries to reach or do any purposeful movement but her right arm has improved a lot and the past few days she was has been able to feed herself without also sharing food with the rest of her face and 3 foot perimeter around her high chair. And today she was able to do a simple knob puzzle! So it’s looking like she will at least get function of her right side back quickly. Only time will tell how much of her left side will heal.

Here she is sleeping on the drive home. Her left eye doesn’t close all the way.

IMG_9896sm

And then there’s the matter of what to do with the remaining 30% of her tumor. The part wrapped around her brainstem. Laith and i have a meeting with her medical team in DC Tuesday to discuss our possibilities. More updates coming soon as we recover from a week of “roid-rage” (Sophie slept 2-4 hours TOTAL each night, and screamed most of her waking hours until we FINALLY adequately weaned her dosage to a more suitable level yesterday).

All in all, despite the challenges we face, we feel so so thankful that Sophie is doing as well as she is. This was a risky surgery and Sophie has not only survived it, but woke from the procedure with no other deficits than the ones her surgeon was sure she’d experience at the very least.

More to come soon- I have photos from our Bounce-a-Thon fundraiser (huge success and huge help to us!), my friend Karen’s visit, our hospital stay, and my Dad and Janice’s visit.

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10 thoughts on “After Surgery

  1. Sending love, always. I know how crazy, beyond any imagining, this is for Sophie and you all. We can identify with so many of these challenges with surgery. Sophie has blown us away with her perseverance and fortitude. Once Max could stand/walk again we got an xbox Kinect (he couldn’t use his left hand) and it was incredible for his recovery. No controller needed. 🙂 They have one cute animal game that Maesie could play, for example. It’s an incredibly long and arduous path but you are an amazing family, relentlessly pursuing all that Sophie needs to heal. We’re on Super Sophie’s team always. ❤ Audra & Team SuperMax

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  2. Thank you for this update. When I read about Sophie’s condition, I remember her as a tiny newborn. How you and Laith worked to decode her sleep issues, and later, her intolerance for dairy. These challenges you met night by night, and meal by meal. I believe some children arrive on earth as wildly precise beings, finely-tuned like Swiss watches. Their mechanisms are complex. Their bodies and spirits take great care and skill to maintain. Those who embrace the true nature of these children, and who take care to uphold it, are awed by the beauty and mystery that unfolds. Most of all, they are witnesses to courage, and deserving recipients of abiding love.

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  3. Thanks for the update Jenna. I cling to every word you write. So happy to hear about the amount of tumor removed. I hope her body improves and that she can be independent again. I know it must be scary and heartbreaking to see what challenges she has ahead of her, but she’s alive and she has a chance now. I think about her and all of you so often. I lit a cancel in honor of her tonight and will continue to send good wishes for her recovery.

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  4. Thanks for taking time out of this emotionally and physically exhausting week to write an update. My family has been anxious to hear good news about Sophie, and I’ll be so glad to pass this along. It is amazing how incredibly resilient children are. What a rock star Sophie is! We’ll be wishing for the full return of her vision and motor skills and of course successful treatment of the remaining tumor. Miracles happen all the time, and that’s what we’re praying for. You and Laith are doing a phenomenal job. Keep getting lots of support for yourselves!

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  5. Just sending love, love, love. As I spend so much time in ICU with my mom, your family is never far from my heart and mind. Just waiting and waiting and not knowing what’s next must be so hard. But I’m beginning to believe that all the love and prayers really do make a difference – the vast ocean of love that is all around your family at all times, giving you strength and healing and peace.

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  6. I found your blog on Facebook via Sarah Hubbard (an old school friend). I don’t know your family, but we have a little boy about Sophie’s age who also loves Thomas. I’ve been been reading about what your family is going through. I want you to know there is a family in Texas praying hard for Sophie and sending your entire family love and peace.

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  7. So glad to hear your good news and hope the improvement continues. Maybe some day you can include this in a book. Love and prayers Aunt Hillary and uncle ray

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  8. I go to church with a friend of yours from UVA and I want you to know I have been praying for your sweet girl. Sending positive energy and strength to you from Richmond.

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  9. i’ve been praying for you as a family during this stubble. may you all grow stronger together as a family as sophie goes through this horrible ordeal

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