Last week we got the results of Sophia’s MRI. We met with her neurologist and he showed us pictures, explained some things and gave us a DVD with over a hundred pictures of her brain. She has had a stroke at sometime in her life — probably either in utero or during her open heart surgery that she had around a year old. It was a massive stroke and did quite a bit of damage. The doctor told us that the bottom line is this: she is basically missing 50% of her brain matter on the left side. Considering the diagnosis, it is amazing to me that she is doing as well as she is. So, at this point I guess I don’t know what to expect. Only time will tell. We are getting things set up for her to start OT, PT, and speech therapy as soon as possible.
Oh wow, a smile! You see her every day, can you see how much better she looks? There's a sparkle starting in her eyes. The last two pictures are so pretty, you take great pictures.
I guess it is harder to see the small improvements when you spend everyday with a child. I do see improvement, though. Thanks for the compliment on my pics.
Poor girl. What a miracle that she has a family now who will be able to love her and help her. At least you got some answers, and can understand her challenges.
I agree, she's looking much healthier and happier…beautiful girl!!
How old is Sophia?
And again, I must also compliment your pics! Amazing. You have a real gift! Not only do we get to see Sophia and Bella (and the other kiddos) blossoming, we get to see them how you see them – so much love and beauty in these pics!
Lastly, I have a friend who has a 13 year old nephew who had a surgery when he was about 3 that removed almost half of his brain. He has some difficulties but is doing remarkably well – he attends school and loves to read and listen to music. WIth HALF a brain! Amazing what our bodies are capable of – what God – and love – can do! 🙂
Katie, I understand about hemispherectomy — removal of half of the brain. From what was explained to me it is different when you still have one side that is very damaged. The best way I can explain it is that when the entire half of the brain is removed the the other side starts to take over to the best of its ability. When you have one side that is very damaged or missing then your nerves are still trying to communicate with the damaged part and that part is unable to process correctly. Your nerves keep trying and trying because there is a place to send signals but processing can't occur properly. It is harder for the other part of the brain to take over for the damaged area because the inputs to the damaged area still exist. When half of your brain is removed there are no other options so the other half takes over. That is the best way I can explain the differences. Age also makes a difference. I may not have this exactly right but I think this was how it was explained to me. So, it may be hard for the undamaged parts of Sophia's brain to take over — some of the damage is permanent according to her doctor, and hopefully some of her abilities could be regained. We won't know for some time. I hope and pray she will be able to overcome some of this. Thank you for telling me about your friend's child. It is always good to hear a happy ending.
So beautiful to see her smile – she is gorgeous! She looks like an angel.
Hi Sharon,
This is so sad to hear but it must be helpful to have some answers. I am glad she is starting therapy soon and hope it will be helpful. I will pray for her and hope she will continue to make progress in your beautiful family. I think the first picture would be pretty in a frame!
Sue H.
I am glad to at least have some answers. Today she actually surprised us. She really never shows any preference for anyone and never seems to care who holds her or feeds her or rocks her. But, today when we took her to therapy and the OT reached to take her, Sophia actually put her hand out to push her away. We were all shocked! It is the first time she has ever shown she has a preference for any person. A small thing, but it made me feel so good. It is a start.
Perhaps this will be encouraging: just watched the movie "Gifted Hands" about a neurosurgeon. Great movie. Anyway, he performed many surgeries where he actually removed an entire half of the brain to cure seizures. The rest of the patients' brains were able to compensate. She does not have moya moya, does she?
Whoops – I see people have already mentioned about that and you responded. But I would like to agree with others – that from a distance, we can see that her health and general sparkle are increasing!
you explained that very well. it had not occurred to me there would be a difference but that definitely makes sense. i know some people don't like to hear about other situations because it's, well, different. i hope my sharing a totally different situation wasn't offensive in any way. regardless of how your darling sophia's brain may be now and in the future, she is a very blessed child who i am positive will bloom – even if she doesn't "change" or "make progress". i'm sure you hope for more for her and at the same time couldn't love her any more now, just as she is, beloved child and sister 🙂
Katie, I didn't find your sharing offensive at all. I have so much to learn and don't understand a lot of it myself — but, everything I read and hear from others gives me new questions I can ask her doctor on our next visit. It is still all confusing to me. I guess I just have to be patient and time will tell us what she will and will not be able to do. She does have a very nice disposition most of the time and I do see a little more alertness. I think she may slowly be waking up a little to the world around her.
She is so beautiful! (((HUGS)))