1st Time Sitting Up in Weeks Today the neurosurgeons figured out whats wrong with Alyvia. She has Posteriour Fossa Syndrome (PFS) or sometimes called Cerebellar Mutism. (I am working really hard on my medical terminology!!) Basically, her brain cannot funcion like normal and is having a hard time sending the signals to her nerves, so she doesn't have control over her body, such as muscle control, she cannot talk or smile, and sometimes she can't see things. She isn't blind, but her brain is not sending the signals to her eyes that there is something in front of her. People with this condition are extremely neurologically agitated and NOTHING will calm them down. Sometimes the freak-outs last for 5 mins and sometimes it lasts for hours....it is very frustrating to know that there's nothing I can do to help her. This is just something she has to go through until her brain heals. This is not a common condition, but sometimes it happens to patients that have had surgery in the brain stem or cerebellum. Livie's brain will take an average of 6-12 mos to heal. Some people never fully recover. The brain is so fragile. I have faith that Alyvia will come around, she is already making small baby steps. She seemed fine after brain surgery, but a lot of times this condition takes 48 hrs to manifest itself. (And by then Livie was in the P ICU on life support)
Health wise Livie is doing good, she had a CT to check her spinal fluid and an ultrasound to check the blood clots, we still haven't gotten the results back so I will keep you all posted.
Neurolgically Livie has quite a ways to go....good thing she is such a strong little fighter. (:
7 comments:
Alyvia is such a fighter! I am glad you have a blog so I can get updates. Give Alyvia hugs from us!
It's so good to hear a diagnosis. Now it's just a matter of time. You two look so cute, I'm so glad you started a blog so I can get daily updates. Love you lots, take care!
Alyvia is looking so much better!! I am glad they have diagnosis and you can begin to move forward. I know she will come back, besides her and Madeline have a play date you can't break! ;-)
It's so great to actually SEE your pretty faces! I love this blog, it's so much faster than texting! We know Livie Bug is in there; being a little fighter, just like her mommy. You are both in our thoughts and prayers. Kiss her for us! XOXO
Megan,
I dont' know you and Hutch personally, but Pat and Buff are in our ward and I am good friends with Becky Herrick who has kept me up to date on little Alyvia. Anyway, I just wanted to tell you that we continue to pray for Alyvia. She is such a fighter and I am amazed at what she has overcome so far. You and Hutch are such an example of faith and this is what will get all of you through this. A mother's love is stronger than anything and because Alyvia knows how much you love her she will conquer all of these set backs. Her little body just needs time to heal. Stay strong and remember how much your family is loved....we will continue to pray!
Summer Gibbs
Give Livie a kiss and tell her gamma will be there soon! I.m looking forward to taking her for a ride in the wagon, however, Megan you might have to climb in and ride along! See you Weds.
The McCurdy family sends all our Love your way. Your in our prayers and thoughts everyday. I put your names on 5 temple prayers list today. I know that the Lord is very mindful of alyvia and you.
Have a blessed day. We send all our hugs your way.
Love the McCurdy Family
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