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Hi! My name is Emily and I'm a writer, a wife to Nick and mother to two very sweet little girls named Daisy and Ella. We live in a quaint little town outside Philadelphia, PA, with our two black lab sisters.

 

I started this blog as a way to stay connected with friends and family after Daisy was born and it has now become a home for musings on everything from our favorite family recipes, books, travel destinations and, ultimately, my quest to balance work, life, self-care and family - all while staying grateful. Happy reading!

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Early Intervention, Chromosomal Testing & SMILING!

July 29, 2016

This has been, quite possibly,  my favorite week of motherhood thus far. This week, Daisy started really smiling. Up until now her smiles have been seemingly involuntary - mostly in her sleep or immediately followed by wailing - or specifically tied to things happening in her diaper. Now, Daisy is smiling because of things we are doing, which means we are making her happy and she is showing that to us, and it is pure magic.

 

Things That Make Daisy Smile

  • Mornings - when the final alarm wins out and we rouse ourselves from sleep, pull her out of her bassinet and into bed with us, she is on cloud nine. She seems to love seeing our faces for the first time every day after a long nap

  • Music - particularly the sounds made by pianos and xylophones - especially when played close to her ear

  • When we blow on her face - not only does she break out into a wide grin when we softly blow on her face, it immediately halts any crying - she can be in the midst of an epic meltdown and a light blow on the face immediately changes her course, her eyes get wide and she sticks her tongue out!

  • Having her feet tickled

  • Cool breezes passing over her face when she is in the stroller

  • Lights - curiously, our most expensive light fixtures seem to mesmerize her. She clearly has excellent taste. Money well spent? I think definitely.

In other news, Daisy had an evaluation with early intervention last week. For those unfamiliar, EI (which in PA is called ChildLink) is a free service financed by tax dollars that coordinates services to help children, from birth to age three who have special needs or who may have developmental delays, access early intervention services like speech, occupational, physical or other therapies.

 

Daisy’s initial evaluation showed significant delays in some areas and no delays in others. The therapists expressed how pleased they were with her social behavior - her desire to be close to mom, her awareness of voices around her and apparent interest in being part of the conversation. She showed no delay or cause for concern in the cognitive, social and communication domains. Daisy’s fine motor skills were also on par with her age group - her fingers and toes have a strong grip and she seems able to exercise them well. 

 

 

Daisy did show a 100% developmental delay with her gross motor skills (she is still not able to hold up her head at all - without assistance from mom and dad it flops from side to side or drops to the front) and her “self-help or adaptive domain”, which involves adapting to the environment and the ability to do things for oneself. Skills associated with this area include feeding, dressing, toileting and drinking independently. Time will tell how the latter delays present themselves in Daisy’s life but based on this evaluation, we have been assigned an occupational therapist with special experience in feeding issues, who we will work with her on a weekly basis for the next few years. We are very eager to learn how we can attack these problems and give Daisy all of the tools and support to succeed.

 

Finally, I am very very very pleased to report that the last of the outstanding chromosomal testing on Daisy has come back N E G A T I V E! While this still does not explain why Daisy was so sick in the womb or what is causing some of her ongoing struggles, we have ruled out all of the terminal conditions that her physicians were focused on. This is a major, major milestone. Daisy remains a mystery, a miracle and the most magical gift. We are still not sure what the future holds but we know your prayers have gotten us this far and that if her smiling is any indication, she is a very, very happy little lady. 

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