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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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Fourth of July & A Neurological Update

July 6, 2016

I am very, very happy to report that today we had the first really excellent doctor’s appointment ever with Miss Daisy - a follow-up with the pediatric neurologist who studied her in the NICU and ran EEGs and MRI exams while she was there. 

 

 

I was dreading this appointment. The first time we met this particular doctor his delivery was a bit cold and his outlook on Daisy was in no way positive. While he was just doing his job, of course, I wasn't looking forward to hearing the same things again. In the month since we saw him last, I actually built up a little bit of resentment against him which I now realize was completely childish, but it is so, so hard to hear someone forecast anything less than perfect health, endless prosperity, undying love and the Nobel Peace Prize for your child. 

 

Fortunately for all of us, this morning the good doctor seemed very pleased with what he saw. Today’s visit was more of a physical evaluation and observation of her development since coming home. Daisy responded to the sound of a ringing bell and blinked reactively to repetitive clapping. She winced when he touched her body with a cold piece of metal. She tried to grip things with her fingers and toes and tried to balance herself on her feet when she was dangled over a surface. He explained that all of her reflexes seem normal and she appears to be developing neurologically as one should at her gestational age, which is just under a month (as she was due June 10).

 

The doctor saw no immediate need for further EEG or MRI testing and encouraged us to listen to our instincts and work closely and carefully with Early Intervention, which we of course plan to do. While we are not “out of the woods”, he was very pleased with her status and reminded us that if she were to have a metabolic/lysosomal storage disorder like those she is still being tested for, she would likely not display developmental growth.

 

 

Between this and the negative Niemann Pick news we are feeling really good right now. Daisy continues to be the absolute light of our lives. Every day is so much more special and exciting because she is in it. The Fourth of July was extra wonderful because it was Daisy’s first. I haven’t been able to help myself from buying every adorable piece of baby girl clothing I see, so, naturally she had four patriotic ensembles to model throughout the weekend. She was very patient while I changed her in and out of them and took eighty three thousand photos of her laying in her crib with a pinwheel and a sunhat. 

 

It was a beautiful weekend here in Philadelphia. We took some nice family walks, I planted an herb garden and got some seeds going in the backyard, Nick installed barn doors on the master closet and guest bedroom closet and I tore through Their Eyes Were Watching God while Daisy slept on my chest. I am reading more voraciously than ever now that I have a

sweet warm little person to keep me still long enough! I highly recommend Their Eyes Were Watching God if you haven’t read it. One of the most revered pieces of literature in the African American canon. Now I am onto All The Light We Cannot See which won the Pulitzer. Scrambling to make the most of my remaining maternity leave - just seven days slipping through my fingers like quicksand...

 

Hope you are all wonderful & had a sunny Fourth of July weekend full of flag cakes, brilliant

 

fireworks, sand between your toes and parades. We will toast to all of you tonight when we celebrate this little victory for Daisy and thank God for all of your prayers at bedtime. We know they are making all the difference...

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