Amelia family update

Amelia is thriving. She is doing her best despite the cards she got handed. She is a wild spunky babe. She loves her brother and her baby with her whole heart.

Amelia has been having so many seizures again despite med change, diet change etc. so it leaves us with having to really think about the surgeries. She’s doing good in food therapy and making progress with words and balance! Early interventions goals right now are mostly to communicate better with either words or sign (she picks up really quickly on sign language) she is still screaming for hours at night, and through out the day having “episodes” of being in pain and grabbing at her body rolling on the floor.

Baby Hazel has had quite the short rough life so far. Her platelets are finally going down. She still has a lot of highs and lows on her blood panel but they’re trending in the right direction. We have discovered she has a valve in her heart opening up allowing wrong way blood flow. This could cause clotting disorders and strokes, but she is being monitored closely and if any change she will have surgery to close the valve. She is still having several seizure like episodes but the eeg always comes back normal. We just did a 3 day one at home and will get those results in 15 days. She is now holding her breath, body jerking and her eyes will be locked shut, then after a minute she will breath again with tons of drool, then she will finally open her eyes and they will either be looking upwards or to the side or they will be blinking rapidly.

Big brother Greyson is seriously such the sweetest thing to his baby sisters. He is their protector and is always hugging and kissing their owies better. He is officially 8 and had a great birthday. He goes through more then I thought he ever would have to.

I never realized how strong and resilient kids are. ❤️