We're actually going back to Cleveland this week for her six month follow up appointments and testing. The good news is Mila is doing pretty well and has had no seizures since surgery!!! Praise God!
She continues to amaze us everyday with little things that may seem basic for most kids but are truly incredible considering her circumstances. Mila's personality is really coming out and she cracks us up all the time doing things like a typical two and a half year old. She's learned how to scoot to get around which keeps us busy going back and forth between rooms to keep an eye on her.
She still gets in-home therapy 3-4 days a week between physical, speech and occupational. She isn't able to walk still and has a hard time even putting weight on her right leg to try to stand since surgery. This has been hard considering she was so close to walking on her own prior to surgery and she loved to walk along furniture. But hasn't been able to since. She's also getting bigger and heavier which makes it more difficult for us to pick her up and carry her all the time.
Her right arm and hand are also not very useable. She does try to use it and can lift it up and down, which is a good sign. Hopefully in the future she'll be able to use it more as a helper hand. Her vision cut from surgery is also noticeable at times when she can't see things at certain directions.
We've also been weaning her off of one of her anti seizure medications for the past month. So far so good. She has been trying to talk more lately. Which could be due to less meds or speech therapy or both. She repeats sounds and occasionally can get a new word out pretty clearly, which is absolutely awesome. "Momma" has been a new one lately and you can bet someone is absolutely ecstatic. Marcela has waited a long time to hear that.
Eating and drinking have improved. She relearned pretty fast after we got home and it hasn't been a huge issue. We still have to make sure her food is soft and cut into small pieces but it's more related to her cheek and teeth.
Mila's sleep has also improved a lot. It's not great but it makes life way more manageable. We were living like complete zombies for two years.
We feel that the "static" that was going on in her head is gone and she can comprehend things more clearly now than before surgery. Hopefully everything will go well with her follow up tests.
We hope that she can continue to amaze us each day as we know things can change at anytime. So for now we'll just keep on counting our blessings and take things as they come.
Thank you to everyone who has asked about and continued to pray for Mila and to our friends and family for the support and help with even the little things.







Love hearing about her progress❤️ Our daughter who is now 27 contracted viral encephalitis, swelling of the brain at the age of 1. Many of the issues you are facing with Mia we also faced. I could never imagine what life would be like 6 months out or 1 year or 18 years. I learned to live in the moment and appreciate her joy. We found swimming was an excellent therapy to help her tone on her right side and bring more symmetry to her gait. (The illness left her with significant brain damage and too much tone on her right side) She is considered non verbal but communicates very well. Surround yourself with positive people and always have faith in Mia, I'm sure she will continue to improve and surprise you. Sending you positive thoughts and prayers.
ReplyDeletePraying for you & Mila❤️
ReplyDeleteSo pleased to get the update - hopefully the progress will continue but meantime enjoy every minute with Mila!
ReplyDeleteLoved reading this...restores my faith, feeds my soul. I think about you all often, I know the challenges are rough, I know the realities are rougher. But I also know love and acceptance can make all things easier to bear. Good luck!!! Thanks for the update! Rasberry kisses to the princess!
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