So happy to be so BUSY ;-)

Wow! What a day!
We started out with consults with the PICU docs and dietician, removal of the PIC line and placement of a new IV, treatment from the alternative medicine representative, and visits from the Allreds. Then it was plans to move to the children's medical unit, and before long we found ourselves running from one thing to another - and Sylva didn't mind the rush a bit. It was like she was making up for lost time. Not really wanting to use her voice and having some really sore vocal chords from the ET tube, she has resorted to much signing, and so taking off in the elevator for a new room had her with an ear-to-ear smile and her hands busy signing 'excited!'


Nearly the moment we arrived we had more visitors from numerous members of the hospital staff and the Rainbow Kids representatives and then it was time for her first wheel chair ride and trip to do Physical Therapy.


Sylva was pretty happy just going along for the ride but truly delighted to be able to attempt to climb some stairs. She has really atrophied from the paralytic drugs and so much time in bed and in the last week as she has even tried to write on a paper she has been so discouraged when she realized her weakness and limitations that she readily gave up. Today was a different story - her legs buckled on the first step and pretty much failed after that but she was absolutely determined so she crawled with help like a baby to the top and boy was she proud of that effort! After playing for a while with various toys she spied a padded surface with a wall mirror and must have thought its purpose was for gymnastics so she persuaded the Physical Therapist to put her there and proceeded to attempt a head stand followed by a back bend. She had no strength to do either and the therapist seemed surprised that she'd even try (telling us that this was outside of her training) but Sylva was smiling the whole time and seemed undaunted by her weakness. It will be interesting to see if she has the courage to try again.

Next she was off to do a new ECCO to determine the extent of her pulmonary hypertension which is usually not her favorite but she did a good job. We are still waiting to hear the results as they will make a major difference in the days to come as to what medical treatments she needs.



No sooner had she returned to the room but what she reminded us that we had been promising her a time to play the grand piano and visit the play room so we were off again with her 2 brothers proud to push the wheel chair and handle the oxygen. Jess played some of her favorites and Sylva assisted enthusiastically and then she made some new friends playing in the courtyard.


Two more doctors consults on the way back to the room (they find you anywhere you are ;-) and she was back to the room. By this time Grandma had arrived and she was enlisted by Sylva to proofread the shopping list she was busy preparing for Mom's trip to the store. This being the first time she can really eat through her mouth since being transferred to PCMC and being given the go-ahead for just about anything she'd like, the list was rapidly and matter-of-factly produced. Sylva really is making up for lost time!!!


We are just amazed at how well she is doing and this is being echoed by those who have worked so hard to get her through this. No one really could have predicted an improvement as rapid as this! People are telling us "she is so strong" "she is such a fighter" and how surprised they are. It is tempting to attribute her improvements to her strong will as she certainly IS a strong fighter yet we also clearly know that her strength has been a gift as she has been sustained by the many many prayers in her behalf. For those who have followed this challenge of the last weeks and the back and forth changes she has gone through it is hard to believe she is the same girl that she was even 1 week ago. Truly amazing!!!

A note to our readers:
At some point, I will try to put together a very short history of the main events and changes she has gone through. Each day is so full of impressionable events that you think you will never forget all the details yet by the next day there are so many new events that the focus is brought to the challenges and drama of that day. Add to this the lack of sleep and it all begins to seem like a strange dream where you can hardly believe all that has happened.

emily  – (July 7, 2011 at 10:24 PM)  

My dear Sylva! My heart leaps with joy to read such positive updates. I wept all through sacrament meeting the day I found out about you being in the hospital. I can't even tell you how much you've been on my mind and in my prayers! Keep going my girl! Much Love, Emily Henrie

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