One year later

One year ago today. It doesn't seem like enough time has gone by for it to have been a year! It feels very surreal to think about where we were a year ago. 

Our sweet girl is doing pretty well. Her hair has grown back enough that she decided to get a shorter cut and now it blends in pretty well and looks very nice on her. 

Jaylia and I (Joanna) are headed back to Philadelphia March 20th. She'll have a neuro-opothomology appointment, CT scan, and see her surgeon, Dr. Taylor. She is also participating in a research study to see if an MRI can reproduce the same results as a CT scan without the radiation from a CT, so she'll have a long MRI as well.  Pretty cool that she has this opportunity to be part of something that can help others. 

As far as how she is recovering from the surgery I won't know any of that until after these appointments. There are spots and things that concern me, but we'll see what the scans say.  She's never had "typical" high icp symptoms so I tend to be a more suspicious of things that are just different in her behavior. 

A beautiful friend of mine has made Jaylia a special cake, I'll be posting pictures later today! We are so excited to celebrate this anniversary! Here are a few pictures of the last year! 

The day we flew out last year.

On the ride to the hospital.

She got so serious while we were waiting for her surgery to start. The enormity of it all sunk in. She did not easily comply with anything during this stage of the process. Thankfully she doesn't remember any of it now. 

After surgery. Man that was a rough 2.5 days. She would cycle through sleepy to vomiting and back to sleepy without much wake time in between. Getting her to eat was difficult and at one point she was asleep and her blood pressure bottomed out I think it was the second night in icu. I wrote about it at the time, but in retrospect I remember waking up while they were giving her fluids and meds to stabilize her and not really realizing how scary of a situation it was until much much later. Thankful for God's protection over my girl. 

They moved us to the surgical floor day 3 at about 3- 4am and removed her bandage at 6am. Really rude wake up that morning for her! She cried after they left the room, it was brutal. Over the past year she's had moments of upset over it, but overall has been a very brave warrior! Getting a pretty cut so the shorter pieces blend into the rest of her hair just recently has made her so happy. 

When the swelling set in! In the moment, I remember thinking, "oh she's not that swollen compared to other kids I've seen after surgery!" Now looking back I realize how truly swollen she was!! It did go down relatively quickly though, especially after we left the hospital on day 5. 

We were able to visit Mount Rushmore in August, Jaylia was excited to see Pennsylvania along the Avenue of Flags. Safe to say this state holds a special place in all our hearts now. 

This is after her haircut just last month. It's amazing to see how her forehead has rounded out during these months of healing. We are so thankful for her doctors at CHOP who looked beyond the "normal symptoms" and helped our girl.