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Thursday, September 19, 2013

How encephalitis made us a family of two with special needs

A year later after Julia's hospital stay and encephalitis rocks our world. Julia has recovered mostly accept for independent standing and walking. Reality has set in how lucky we are to have our baby girl and just how different our lives are now. Being a mom of one special needs child changed me and I didn't think there was more changing but there sure is. The process of IFSP ( individualized family service plans), doctor appointments, therapy and research has doubled. 

Today, Julia and I ventured to AI our home away from home for physical therapy.  I know you at wondering what is different about today's visit than any others? Today we went with a walker in tow for Miss Julia. A walker that I had to accept again for another child. I had a brief moment of not wanting a walker. That was short lived when I saw her just go. She got in that walker and knew exactly what to do. Of course being Julia her walker must have a ton of glitter. Luckily,  her therapist from Easter Seals understand my little ones sassy personality and decided to help her make it pretty. Julia spent an entire hour working hard in physical therapy. Harder than a two year old should. She desperately wants to run and play. Her mind believes she can do it however, her body is still trying to catch up. After her session I was amazed with this little girl. She refused her stroller and walked from pt, which is on the ground floor to the hospital entrance on the first floor. Sure it took us twenty minutes. My children sure know how to ground me and force me to slow down. Slowing down was nice.  I got to see her joy and how proud she was walking like a big kid. I also have another social butterfly stopping to say hi to everyone. 

AI DuPont is truly a special place for us. This hospital saved my baby girl. This hospital is our second home. What makes this visit special is all the encouragement I received from other families, staff, physicians and nurses. One doctor stop to say hello and to tell me Julia rocked that walker. He said I can't imagine her needing it long. I sure hope his prediction is right. I keep hoping and trying to pray to whomever is listening to heal my baby girl. I wish she didn't have to work so hard. I wish she never got sick and contracted encephalitis. More than anything I wish for continued improvement. Encephalitis is tough and such a scary condition. It brings new worry such as vaccines, worrying if people she is around have received live vaccines, are people sick, and understanding seizures. I will end this post with some photos of today. 


  1. I LOVE IT! She is ROCKING it. Beautiful! I'm certain this walker is just a blip in her story, and not a forever chapter, but what a beautiful blip!

  2. Thank you so much Allison!! She truly is a strong willed girl and for now I enjoy the walker races in our house. Hayden is being a big help and teaching her the moves :)