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May 8, 2019

A decent day for Julia - she really just slept. She was probably so worn out from her big day yesterday =) PT planned to take her for another ride in her stroller (this would be only her second time outside the room in it), but she was SO tired and SO cranky that they just let her sleep. They will be back tomorrow instead.

Lots of people (online and at the hospital) have commented on how well her right eye is tracking - and it really is. It's not perfect, but it's definitely a huge improvement. I'm not sure if the pupil is reacting to light yet - ophthalmology put a hold on shining a light in there until further notice. Maybe they'll check it again soon and see if there has been any more healing in that area =)

So she's just been watching a lot of cartoons while holding Reed's hand <3 If he takes his hand away, she kind of smacks hers down on the bed to get his attention! She's only content if they're connected. Oh! And she's started to suction her stuffed animals noses, which is SUPER adorable. I guess it's really one of the few things she can reach, and she SO wants to play! And she stole the tooth brush thing (more like a swab) right out of the nurses hand. They asked if she could brush her own teeth and she shook her head 'no'. Then they asked if she could brush Tiger's teeth and she certainly could! And then she brushed Peppa's teeth, and Big Peppa's teeth, and Penguin's teeth... She thought that was rather amusing.

I mentioned yesterday that she might be ready to come home in a few weeks (thinking 3-4). Nothing is set in stone yet, but it was said at the most recent meeting that if she continues to progress as she has been, she should be medically discharged in 3-4 weeks. And then it just depends on if Reed and I are trach-trained, and if she has all the proper home care set up.

She will require 24-hour nursing for the first 2 weeks, and then our insurance will cover 16 hours of nursing; generally a night time shift and a day time shift, so parents can sleep and work. And then evenings will be just us. I guess someone always has to be awake and within easy reach due to the trach. So we'll have a nurse here most of the day... every day... which will be a huge lifestyle change. Both Reed and I really appreciate our privacy (though he hasn't seen much of that in 6 months of hospital life). We will be setup with all the medical equipment we need, and we'll be advised as to what, if any, home alterations will need to be made.

As far as treatment, she will still have cancer, so she will still be doing chemo. We have no idea how much longer that will continue. She will likely go in-patient for 5 days for her infusion, and then come home to recover for several week. During that time, we will take her to a closer CHOP for blood work 2x a week, and she'll go back to the hospital with any complications (such as fever). So that's the plan as far as i know it.

Pictures tonight - look at her leg all propped up! We just found her chillin' like this. Such a small thing to be amazed at, but this is the first time she's been able to maneuver either leg into a position like this all on her own! And also a pic of how we found her sleeping - apparently Tiger was nowhere to be found for an eye patch =( so she just fell asleep with her hand over her face. It's very likely to keep the light out of her right eye that doesn't close fully on demand (it gets there eventually as she sleeps). We turned out the light and she was good <3 And a video of her brushing Tiger's teeth! I LOVE SEEING HER ACT LIKE A 2 YEAR OLD!! With a bonus clip at the end of Gabriel trying out Julia's favorite toy ever (Donkey) for the first time tonight...


. . . ********************************* ********** Official Links *********** (These are here because of scammers) *********************************

Julia's *only* pages: Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers: T-shirts: Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3

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Good morning. I still check in on your family each day and pray for you...Adding now the pending transition home. It seems exciting and huge at the same time. You are not alone. God will continue to provide who need each day. Love and hope, Mary (old philly friend of Reed’s cousins) 💕🙏

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