A Halt, But We’re Moving Forward

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Last Tuesday Lola had her 24 hour video EEG at Riley Hospital for Children. You may remember, Lola had one last year as well so unfortunately we were no strangers to this long procedure. The hope in monitoring Lola’s brain activity was to help give us the reassurance we needed to start a wean off of her anti-seizure medication, Trileptal. Yet sadly, we did not get the news we had hoped for this time around. Last year, Lola was having abnormal spikes in her brain which we were told could potentially lead to seizures. Per the suggestion of her neurologist, Dr. Zimmer, we decided to keep her on the Trileptal for another year just to be safe. Her body was doing a slow wean anyways due to her...
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That’s SAHM to You!

Stay at home mom

Today begins the third week of something I’ve looked forward to for a long time now…I’m officially a stay at home mama (SAHM). OK, I fibbed a bit. I still work two days a week, but for the most part I am immersed in Lola’s life every single day. And I have to say…I absolutely love it. I won’t go into full details about the transition, but lets just say Rob landed what many call “a dream job”. He is incredibly happy and while I know he misses his time with Lola, he was more than ready to embark on this next chapter in his life. I have to thank him for everything he has done for our girl. Most men would never make it as a stay...
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2013 VIPS Retreat – A Reunion

Last weekend Rob, Lola and I drove down to Louisville, Kentucky for the annual VIPS Retreat. Last year we were quite impressed with the overall logistics of the event which meant there was no hesitation in saying yes when asked if we’d be going back this year. We arrived early Saturday morning and first to do on our list was check Lola into the VIPS preschool. The VIPS Preschool is specifically designed for children who are blind or visually impaired. Not only is the infastructure designed for kids like Lola, but the toys serve specific vision loss components and most of the personnel are trained teachers of the visually impaired. There is a nurse on duty for those children who are medically fragile which helps ease the mind...
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And So The Transition Begins

A couple of weeks ago, we moved Lola into her very own big girl bed. We considered many options in regards to a bed for her. Was she ready to move out of a crib? Would she be safe in a raised toddler bed? Should we buy a toddler mattress to put on the floor first? Should we consider a twin size mattress on the floor? After many long discussions, Rob and I decided we would move Lola to a twin mattress that would stay on the floor. Lola is a long girl and we would often hear her hit the sides of her crib which would inadvertently disrupt her sleep. We did not feel that Lola was ready to sleep in a raised bed as her comprehension...
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And Of Course, a Lola Update

Lola has been one busy little girl which means that makes us busy by default. I’ve said it before and I’ll say it again, to us Lola is just Lola. Sure we know she has challenges and quirks, crazy schedules and many appointments, medicines and much much more but that is the life of our little girl. It’s the only life with a child that we know. When I don’t post about Lola, it’s simply because Lola is just busy being a typical toddler. She’s sassy and hornery. She is on a food strike where all she wants is peanut butter sandwiches and crunchy snacks. She throws fits because she can’t voice what she wants which has led us to believe that “the terrible twos” really do exist....
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