Harlie is making huge strides every day! It really is amazing to watch. I think the team here is pretty impressed with her strength and determination. This girl is motivated to move and doesn't let a little (or a lot of) pain get in her way. I'm more proud of her than words can ever say!!
So, to recap the past few days...
On Friday, Tom came up for the weekend. Our friends, Mike and Laura, also came through town. We normally spend some or all of our spring break with them, depending on how our breaks align. The past few years we've been going to Charleston or Myrtle Beach with them. So, they stopped in DC on their way south for their spring break. They got a hotel room close by. And, they got us a room so we could hang out together while they were here. We walked to Union Market which is a very cool place with lots of dining choices. Then we went back to the hotel to play cards. It was great!
They left Saturday morning, but they booked our hotel room for the rest of the weekend for us! How nice was that?
Then, on Saturday, we were able to get Harlie outside for a bit. I just can't get over how much progress she's making! It is so hard to believe that exactly three weeks ago (on Saturday) we almost lost her!! Just look at her now!
Isn't she amazing?! When the team rounded on her that day, their guess was 7 to 10 more days in the hospital. Whew! I can see the light at the end of the tunnel now! She is still going on the vent at night. So, they are working on weaning her to trach collar at night. Her lungs are getting better, but she still has a lot of secretions and still requires oxygen.
On Friday, the physical medicine and rehabilitation doctors came by. We chatted for a while. They are recommending that she go straight from here to inpatient rehab, which is around the corner. While I am not excited about that, if it is what is best for Harlie, then we'll do it.
I spoke with a friend who knows her stuff about therapy and she agreed. While Harlie is doing great, her muscles and endurance have taken a huge hit and she is extremely weak. And she never got back to her baseline in strength from her hospitalization in Boston. Just the effort to get her into the car and to outpatient physical therapy will be exhausting for her, and might wear her out before she even gets to start therapy. So, we are going to start with inpatient and see how it goes. Once we get her home we will do a more intensive PT program, which will be great.
So, at this point, I have no idea what that looks like, when we'll be transferred or how long we would be there. Time will tell.
On Saturday, we went to a late dinner with our friends Mona and Chris. That was a lot of fun.
On Sunday, we got Harlie outside again. It is so wonderful to be off all of those lines and be free enough to get out of the room!
Mona came and picked me up for lunch and a little retail therapy in Georgetown. So, that was nice. Thanks, Mona! And one of Harlie's nurses, Caylee, came by to visit.
Today (Monday) she got to go and paint a flower pot and color. Our nurse brought me a calendar of events for kids. I showed it to Harlie and asked her if she wanted to paint and color. She answered yes. Then I showed her that tomorrow is trophy day, and would she like to go to that, too. She said yes, and then said, "where's going home?" She meant where is that on the calendar. I told her that she has to go to another place to get stronger first. Then she covered her trach with her finger and said, "Oh, come on!" Then she grabbed her empty water cup and crushed it in her hand to show her frustration, while being funny at the same time. It is awesome to see her joke around, even when she's disappointed. Although I'm sure she knows she's not ready to go home. She's smart like that.
She got PT and OT today. She still needs a lot of support to stand, but she's getting there. She took a few steps with a walker today, with lots of support, of course.
And she painted a flower pot.
So, overall, she is making huge strides forward. I am so proud of her! She is such a hard worker!
Thank you for all your continued love and support. It is so appreciated!
Much love,
Christy xo
5 comments:
So glad to see that she is doing much better! She looks so sweet in all of those pictures!
-Allison
Wonderful to see her smile! Love from CA to all of you
Love to see her doing better! And painting!! She's remarkable! So much love and prayers to you and your amazing family.
Crying happy tears for you guys. She’s a warrior. You all are.
Awesome update, so happy to see her progress and her attitude! Love it!
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