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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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Good news from CHOP, Therapies Aplenty & Adventures Ahead!

October 18, 2016

Hi friends and family!

 

 

It has been a busy – but wonderful – month here in the Sullivan household. Daisy met with a “special babies” doctor a few weeks back to evaluate her progress and status developmentally. She urged us to consider having a G tube surgically placed in Daisy’s stomach for feeding purposes as she was concerned the NG tube currently in her nose might deter her from eventually wanting to feed orally because it is uncomfortable and a bit of a nuisance. 

 

Nick and I had deep reservations of putting Daisy through another medical procedure – in particular a painful surgery that would leave a scar. We also believe strongly in following Daisy’s lead and the tube in her nose never seems to bother her. Further, she has shown us LOTS of interest in feeding orally – she is taking a bottle a few times a day and we have been giving her tastes of a different food each week and she LOVES the taste of real food! (See list of foods tried so far below)

 

 

So, given all this, Nick and I made an appointment with the GI team at CHOP to discuss the pro’s and con’s of G tube surgery. I am very happy to report that at our appointment yesterday, they saw no need for the procedure and agreed with our assessment that Daisy is doing just fine. They said as long as we are okay with the somewhat high maintenance nature of Daisy’s existing feeding regimen, she is displaying good progress toward eventually being able to eat solid food and they felt surgery was not necessary. We are THRILLED!

 

The special babies doctor also recommended physical therapy for Daisy. While the proud mom in me wants to resist this because I see every breakthrough and bit of progress and think she is endlessly advanced, the other part of my brain reminds me that extra therapy can never, ever hurt Daisy so we may as well accept and embrace all the services available to us. After all, our goal is to give Daisy every advantage and tool we possibly can in life.

 

One of our new favorite things to do is feed Daisy tiny tastes of our food every couple of days to see her reaction and gauge her interest in eating. We've also started introducing baby food. So far Daisy has tried the following:

  • Apple sauce (loved)

     

     

  • Strawberries (skeptical)

  • Root beer float (loved)

  • Vanilla soy "ice cream" (loved)

  • Carrot baby food (skeptical)

  • Hot sauce (skeptical but surprisingly went back for more)

  • Caesar salad dressing (not a fan)

  • Lemon (skeptical but went back for more)

  • Raspberry (loved)

  • Wild blueberry & apple baby food (loved)

Selfishly, the best part of this exercise is watching her cute face scrunch up and her lips purse and her eyes grow wide while she experiences each new flavor. Someday I will get a better blog platform so I can share videos of things like this with all of you. They are hysterical.

 

In other news, it feels like Daisy is growing longer, bigger, stronger, smarter and faster every day right before our eyes. She is so curious about the world around her and constantly testing the limits of things. In the last month she has transformed her gross and fine motor skills – she can now drag herself across the floor (not quite crawling yet, hasn’t figured out how to leverage her arms :), she can reach at items dangled above her and grab them in her hand, she can transfer things from one hand to the other, and she has learned how to blow bubbles with her own saliva and she spends a good portion of the day practicing just that (and thus drooling all over the front of her clothing :).

 

Daisy’s latest favorite things:

  • Piano toy (thanks Pops!)

  • Bath time

  • Changing outfits

  • Looking in the mirror

  • Riding in the stroller to the dog park listening to St Paul & the Broken Bones

  • Car rides

  • Hanging out in the nude

  • Being in mom’s arms

  • The time of day when Dad comes home from work

 

We are getting really excited for some travel in the next couple of weeks. At the end of October, we are traveling to Saratoga Springs, NY, where I went to college and where my best friend from college and her husband live with their son Jack who was born just three days before Daisy! We will be spending the weekend with them in their brand new home and Daisy and Jack will celebrate their first Halloween together (Jack is going to dress up as a carrot and Daisy is going to be a bunny!). I always love going back to Saratoga – it’s a beautiful town and filled with so many happy memories from college. I am really looking forward to making new memories there with Nick and Daisy and the Blake family!

 

The following weekend, the Sullivan family plans to adventure South. I will be in Charleston, SC for a work conference and Daisy and Nick (and the dogs!) are going to drive down and join me so we can explore the destination everyone seems to be talking about these days. We welcome all suggestions and hope to see as many friends as possible along the way there and back.

 

Stay tuned for updates from our travels soon - and thank you for all of your prayers and good wishes surrounding Daisy's evaluation at CHOP. We have the best cheerleaders in the WORLD!

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