In All Honesty

Last night my mind wandered off to a place I hadn’t allowed in to go in a long time…I began to think about the far distant future for my Lola. Yesterday Rob, Lola and I went to the Developmental Disability building to fill out an application for a waiver in an effort to make sure Lola is taken care of as she ages. The waiver offers many services for the developmentally disabled such as home assistance, home modification help, entrance to assisted living homes, wheelchairs and much more. The current waiting list is 10 – 12 years as there is no money in the State for these services, but if something were to happen to Rob or I, Lola would sort of be grandfathered into the system if...
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“Normal” Never Sounded so Good

Well first off we have BIG news to share…Lola’s EEG came back normal! Thankfully there were no signs of seizure activity which means that either the medicine is working or Lola is simply not having seizures. It is too soon to wean her off of the Trileptal as seizures could still do significant damage, but the fact that she is still seizure free is an excellent sign. We were told the doctor would call if she wanted Lola to have a 24 hour EEG to determine if Lola is having seizures as she sleeps, but the fact she hasn’t called yet leads me to believe that Lola is simply living a seizure free life. We are incredibly grateful for all of the extra love and prayers you sent...
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An EEG and an Afternoon

This morning we were up bright and early to head down to Riley Children’s Hospital for Lola’s first EEG in the United States. I had been to two EEG’s with Lola in Costa Rica, so I was interested to see how the two locations would differ. Have you ever seen such a cute pilot before? We were immediately called back and the nurse began to wrap Lola up like a little burrito in order to restrain her arms. Most of you that read this blog know very well Lola does not like any type of restraint (hugs included) therefore we knew it could go one way or the other. Either she would scream and protest or she would actually enjoy it given her early days of being swaddled....
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Therapy Began

I had been anticipating Tuesday since we said our good-byes to Moises (Lola’s Costa Rican PT) this past November. I worried Lola would fall behind without the help of Moises and Melissa as we simply didn’t know what was to lie ahead in her future yet we knew we were seeing something awaken within Lola thanks to their team. So the long drawn out process it took for Lola to get approved for First Steps was agonizing. But then something happened I didn’t expect (and shame on me for not thinking so)…Lola began to blossom developmentally without the help of any therapist or team. She just started to get it. She taught herself how to sit up on her own, how to sit up from the lying down...
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Our Week

This past week has been a rough one for poor little Lola. I guess I should say it has been a rough week for both Lola and Rob. Lola’s first top tooth has finally made its appearance, but damn has it been painful for her. She has wanted nothing but to be near one of us and, surprisingly, another side effect of her teething has been an incredible increase in hunger. We recently began the transition from formula to whole milk, but it really hasn’t been a transition at all as she simply loves milk! She went from drinking three to four bottles of formula a day to now at least five to six bottles of milk along with at least two full solid meals and an ungodly...
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