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©2017 by Hope For Marian, Los Angeles, CA

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Weekend Snapshots

May 30, 2017

 "More More More More" is the theme of the last couple weeks for Marian, she signs more over and over and says, "moe" and then swipes her hand across her chest a few times signing please for good measure, all while maintaining intense eye contact. She is a bottomless pit for food and has given us her first temperamental days. She also has started whacking her hand to the ground when she's displeased. For example, Paul was eating a protein bar that she wanted, "more more more" and sign for please. He got her a bowl of cheerios to snack on instead, displeased, she raised her arm up high, and "WHACK" the poor bowl was toppled over, Cheerios everywhere. I learned a lesson of if you go into the kitchen and see a lone bowl of cheerios on the floor, just leave it alone, instead I bought it over to Marian and, WHACK. Cheerios everywhere in the hallway. This girl knows what she wants these days and it isn't Cheerios. 

 

Marian learned the basic signs around 8 or 9 months, she was starting to use them and then it stopped. We would celebrate when she would tentatively repeat one sign every few days. Now, she is using four or five basic signs several times a day, and using them with a purpose. 

 

I brought Marian to see her pediatrician this week because she threw up from coughing twice in one day. Still signs of weakness. The last time we had been to the pediatrician's office was the morning of her diagnosis for her 18 month check up. I remember filling out the questionnaire to discuss her development, there were lots of nos. Three months and four treatments later, Marian has come barreling out of the gates in the most beautiful way. Her lovely doctor, who was our gatekeeper who didn't miss a beat and gave Marian this chance at life, cried to see the change.

 

Marian's health checked out and we had a wonderful weekend spending time with both sides of our family. Marian is really thriving, although to see her with other kids her age you really can see a gap. There is a big space from where she is today from a few months ago, but similarly a large chasm to where a child without NPC would be. She is taking steps to get there and is a very strong  and determined fighter. Although she did choke on her post nasal drip from her cold this weekend twice and threw it up, at 3 am and 5 am, and also put too much cheese in her mouth and threw that up too into the plate of food I was holding. Oh well, it didn't curb my appetite! (Although it probably should have). 

 

Some snapshots of some happy girls and happy times: 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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