JuniperMaya is 27 1/2 months old. She has made large strides in her ability to interact and communicate. When we ask her questions she loves responding with “yeah”. She says “hi” and “Mama”. She likes to babble while playing. She signs for food, milk, more, diaper, and her own sign for pick me up or give me attention.

Juniper enjoys being in her stander and gait trainer, and has learned how to take steps while in the gait trainer. We take Juniper in nature often and she loves learning thru her sensory experiences. She enjoys feeling the plants and trees. Her favorite activity is ripping up leaves, I love observing the pure joy she has when she pulls a leaf from a plant, rubs it between her adorable little chubby fingers, and transfers the leaf to her other hand.

Juniper has a large open palate that may or may not be repaired. She is orally fed, and does not currently have a G tube. She loves to eat but becomes frustrated since she wants to eat Mama and Dada’s food, but has to eat pureed food due to her nonexistant palate. Her favorite foods are homemade ice cream, lentils and almond butter pudding. She has gained 3 lbs in 4 months due to her love of such foods.

Juniper is on 3 anti seizure meds: kepra, tryleptol and vimpat. We are hoping to ween her off of tryleptal soon and increase her CBD oil. Juniper has had daily subclinical seizures. Thankfully, we haven’t been to the ER since July. The anti-seizure meds cause Juniper to throw her body around, and don’t allow her to sleep which is challenging to observe.

With everything that Juniper has been through, it’s amazing how loving and snuggly she is with us and her doggie. We have had many frightening ambulance rides, and ER visits that have tested our love to it’s limits. I love my child more then words can express, she has taught me so much about the world, and I am forever grateful.

 

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