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Every girl can be a Princess

Posted on Jan 5, 2015 by in Blog | 0 comments

Any dream can be…

Our little Princess celebrated her third birthday back in October, and as you can see, she was treated to a very special cake. We enjoyed a watermelon cake with some added fruit embellishments. This was no ordinary cake.  This was a cake specially made by yours truly for our keto girl, and it was fit for a princess.

When I last wrote, things were tough. We were in the midst of one of Pepper’s seizure clusters and were helplessly watching her slide down. It was more heartbreak than I could handle. I won’t lie, things haven’t changed dramatically, however, since then, we have been given the royal treatment by some outstanding friends. You see, when we thought we were stuck with late night meal preparations, and spans of loneliness and isolation, we started receiving these visits from my husband’s friends. They brought us pre-made meals, and pre-cut fresh fruits and veggies and most of all, they brought us such love. You really don’t realize how much you miss your friends until they show up at your door and embrace you with such love and comfort. My husband is truly blessed to have such wonderful friends, and I have won the lottery many times over for having met and fallen in love with him. I have inherited the richness of friendship with my husband’s friends.  To the PCSS crew and honorary alumnus who made such wonderful meals, who came by to visit, who delivered presents and presence, you are truly wonderful people. You  have filled our hearts with such love, that we can only hope to pay it forward in abundance. Thank you so much. Thank you – thank you – thank you.  We often tell our children that they are rich because they have an abundance of love.  We know we are rich because we have your friendship.

What has happened recently for Pepper from a medical standpoint is that Pepper has had another MRI, the results of which did not show anything out of the ordinary. Pepper has been referred to endocrinology to check on a spot on her pituitary gland which showed up in the scan, but this was nothing suggestive of an issue of any sort. We have not received any updates on the research study that we signed up for with the Genetics / Metabolics lab. We are still waiting to hear back. In the mean time, Pepper has had an eye exam and many therapy appointments as well as a visit with her developmental pediatrician, who I might add is just about the nicest and kindest doctor you could ever have the privilege to meet. She has signed Pepper’s disability forms, and confirmed officially that yes, Pepper does need help. Let’s get her that help.  

Pepper was not able to enjoy the holidays seizure-free and we rang in the new year with another cluster of seizures. We didn’t even have an opportunity to make a new years eve wish to be seizure-free. She spent the days following new years eve in a very subdued, zombie-like state. We started the new year with heavy hearts.  We thought about our friends and family over the holidays, and hoped you all had a restful and wonderful time, but making visits was not in the cards. Speaking of cards, we hope that you all received our Christmas card. If you didn’t and wish to receive future Christmas cards from us, please send us a message with your address and we will be sure to add you to our list. 

Pepper’s motor skills, her speech and her cognitive ability have all made the smallest of gains since our last appointment with the developmental pediatrician, but the important thing is that we have seen gains. Even more important is that Pepper continues to smile everyday. She continues to laugh, to smile, to hold onto us tightly and seek our hugs. So you see? Royal treatment, inheritance of friends, richness of friendship and abundance of love… Every girl can be a Princess.


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