Pot Roast Puree

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Lunch of pot roast veggies is best worn.

Mommy, why can't I have the beef too?

After pureeing some leftover pot roast veggies and juice for Norah’s lunch I discovered that they are DIVINE this way. So I used the immersion blender on mine too and then added the roast on top and had an awesome lunch with my veggie splattered daughter. In that moment the way we serve pot roast in this house forever changed.
Pot roast is a big deal here too. The marbled chuck roast gets a quick hot sear. Then chopped onions and garlic start the deglazing process which is completed with red wine, beef stock and fresh thyme. An hour before it’s ready we add in the potatoes and carrots…and check the juices. There MUST be lots of juices!
Here’s where I’d remove the roast and veggies, thicken the juices and then add everything back. But next time I’ll just remove the roast, plug in the immersion blender and make pot roast heaven.
Norah loved the veggies and notes that they are best served from mommy’s finger while you play with the spoon. And, “why yes, that is pot roast in my nose, hair and ears”. Before you judge, ask yourself, did you enjoy your lunch with that much abandon?

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The date is set

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Just a quick post to let everyone know that there’s a date set for Norah’s open heart surgery at CHOP. It’s Tuesday, September 13th. One month. We’ll drive up on Sunday, September 11th to be up bright and early on Monday for pre-surgery bloodwork, echo and exam. Her inpatient recovery if everything goes well is estimated at 5 to 7 days. So, we hope to be home somewhere around September 20th to 21st.

We’ve been discussing this now for 5 months and I thought I had come to terms. So I was unprepared for the panic that set in at seeing it on the calendar. Now each time I change her clothes or give her a bath I look on the pristine skin of her chest and know that in a month it will be forever scarred. We have little concern with cosmetic changes so it’s strange that this is on my mind.

We’ve researched and organized and done everything in our power to give Norah the best outcome possible. Now we just want to be on the other side.

As you continue your prayers and meditations may I humbly ask that you give focus to Norah’s continual and constant strength, to the surgeon’s steady hand and mind, to an attentive nursing staff, to Norah’s speedy recovery, to an exceptional outcome (giving her heart relief from it’s hard work and causing immediate but also continual growth in her blood vessels), and to safe travels for everyone making the journey to Philadelphia and home.

Thank you again for all of the loving energy being sent our way!

The eyes have it

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Norah's eyes after dilating drops at Opthalmolagist

Eyes Wide Open

Wow! The last two weeks have been such a joy. Norah has made noticeable strides in rolling, using her hands, tummy time AND eating. She’s smiling more every day and at times is a bit of a chatter box. She had her eyes checked and also had her 6 month well visit with her new Pediatrician this week. The Ophthalmologist said that Norah’s vision is right where it should be for her age and that her eyes are perfect. Phew! William’s Syndrome is a multisystem disorder and many kids have strabismus, farsightedness, astigmatisms, optic nerve issues and more. If it weren’t for a possibly clogged tear duct she would not have to revisit the Ophthalmologist until she’s 3 years old. But the doctor wants to check in on the duct in 6 months to make sure it isn’t anything chronic that would need to be probed. The weepiness in that eye didn’t show up until about 3 days before our appointment and has never been a problem before so I don’t believe it is anything chronic. The Pediatrician agrees and also points out that clogged ducts are common in babies and usually work themselves out.

I don’t want to glance over how wonderful Norah was at the ophthalmologist appointment, though. The appointment takes two hours because there’s an exam, then pupil dilation (which takes 30 minutes), then another exam. Norah was calm, still and curious in the waiting areas. The doctor, who sees several William’s Syndrome kids, commented on how alert she was. And when the doctor turned on the noise-making, moving stuffed animals at the end of the long exam room she said, “Most 6 month olds won’t look that far into a room” and with that statement Norah locked her gaze on the animals. Back in the waiting room waiting for her eyes to dilate, Norah seemed to really be enjoying herself playing in her seat and watching lights with her newly blurred vision. It occurred to me that it’s happened. Slowly but surely it has gotten better just like everyone said it would. Our fussy baby is far more content now. And it can’t be a coincidence that she’s less fidgety when she’s out than at home. Norah is ready to get out and explore! She’s intrigued by new places and people and things. It is not lost on us at all that this means great things for her intellectual development.

Norah ranked “low normal” on the developmental questionnaire at the Pediatrician’s this week. None of her categories dipped into the danger zone. She’s off to an incredible start and we‘re eager to harness this momentum and propel her as far forward as possible by getting her into some therapies now.  At this point the therapies are more for us. We need guidance to be sure that the ways we handle Norah, play with her and generally go through our day are helping her get to the next milestone. For example, at Norah’s assessment with the Occupational Therapist I learned to roll Norah onto her sides when picking her up and putting her down as a way of encouraging her rolling. What a difference! We’re excited to find even more ways we can keep Norah on this path.

Norah holding her bottle

Norah holding her bottle

Yesterday Norah held her own bottle for an entire feed for the first time. She lay on the couch between Stu and me as we ate and she fed herself. After just a week of holding the bottle in front of her so that she reaches for it at each awake feeding and she has already gotten the hang of it. I was overwhelmed with pride. Norah is relentless and smart. I know that she can’t be stopped even if she has to work harder for some goals than a typical child might.

Amidst all of these developments I’ve noticed a little bit of impatience in Norah that makes me hang my head and say, “sorry, honey, I think you got that trait from mommy.” She gets frustrated easily and her preferred method of getting a dropped toy or paci is to scream until someone fixes it for her. But Norah has a persistence all her own that will get her past this. I know this because when we reset and try again she always reaches out. What more can you ask for as a parent than that your child continually reach for the next goal? I am so full of pride for this little girl. And love? Norah has redefined that word for me. I feel like we need an entirely new word to cover the deepness of this emotion where it applies to her. It isn’t right that I use the same word to describe a fondness for cheese that I use to portray the body, soul and mind encompassing attachment between Norah and me. It’s beyond words I think.