Welcome to Hope Rising!

'When you have come to the edge Of all light that you know, And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly'
Author Unknown.

Through this journey, no matter what we've faced....our Faith has taught us how to 'stand' and 'how to fly'

Please join us on our journey of Hope. Some times we are 'standing' and some times we are 'flying' - but one thing is for sure....our two amazing children (Will and Sasha) have been the biggest blessings in our lives.
While they struggle through life-threatening illnesses, they also show us how incredible life truly is. Their joy, laughter, fierceness, and tender spirits lift us and carry us through any storm we've had to weather!

Wednesday, March 11, 2009

Post-Surgery Update/Clinic Note Arrives via email already!

Well, the surgery went well and the first half of her recovery went well - but she was absolutely beside herself when she looked down at her leg and saw her 'boo boo' - and I don't blame her one bit. The incision was about 2 inches or so long and the amount of muscle they took out was a good chunk - about the size of the top section of a man's pinky (well, the surgeon explained it that way and showed us his pinky). OUCH!

The doctor said she WILL be sore - and gave us a script for Tylenol w/Codeine and said that she could do anything she wanted to - and told us that she would let us know what she was able to do or not.

She was 'okay' all the way to the pharmacy - not a peep from her - we stopped at a 'Super Target' and were dropping off the Tylenol w/Codeine and picking up dinner (and some prizes). She asked if we were going 'shopping' and I said, "Yes" and she asked to come in. I figured that she wasn't complaining (maybe I was just hoping that she'd breeze through it since she had been doing great so far compared to what I had expected) and I remembered the doctor said that she would be her own 'governor' of I said she could go in. Everything went well until about 5 minutes in when she tried to bend her leg in the carriage - and that was it - the poor thing howled and cried and I just felt SO BAD for her. Ralph took her back to the car and I filled her script and shopped while I waited.

As we got closer to Vance's house - she began to cry a lot. By the time we got to the house she was berserk - we took her in and gave her the medicine right away and took her up to the bed upstairs. We finally got her calm and she laid there all afternoon until about 4 - she would go from being quiet to crying or screaming or grunting about the pain.

At 4, she said she wanted to 'push' Batman and Superman in the stroller outside. We KNEW that it wasn't going to happen - but she was adamant - so we told her to stand up and try to walk a bit....

Needless to say, it didn't go over well - she couldn't move her leg at all and couldn't lift or bend it and she was just crying this pitiful completely broke my heart. We asked her if she wanted US to push her in her stroller (the wheelchair - but we don't call it a wheelchair to her) - we got her downstairs and put her in the chair and it was awful - so we brought her right back upstairs and laid her down again - eventually she calmed down.

Ralph and I have been pretty much a mess all day - while we know this was the RIGHT thing to do - it's SO hard to see her like this and to feel any comfort in what she went through today. Poor Will wants to comfort her SO BAD and she just wants NOTHING to do with him - it's SO HARD for him to understand (and you can tell it's hurting his feelings)why she doesn't want him near her - he's SO gentle with her - he keeps bringing her stuff that he thinks will make her feel better (cars, her dolls, her princesses) - he wants to 'blow' on her boo boo to make it feel better and she yells and freaks out at him anytime he comes near her.

I do take comfort in the fact that my son is AMAZING and SWEET and GENTLE....I just love him to pieces...what a gift he is to us.

She FINALLY fell asleep at 5 and we are glad that she has been comfortably sleeping for over an hour.

I am hoping that, as tonight and tomorrow pass that she begins to feel more comfortable and will be able to move around better.

We received an email about a half hour or so ago from Dr. Shoffner's office - it was his clinic note (and a VERY detailed one!) from yesterday...WOW that was FAST!

We talked a lot yesterday about Sasha's history - but he really didn't go into much detail about what his 'thoughts' or 'suspicions' were....
After reading his note...Ralph and I are really quite concerned because the 'list' of possibilities are NOT good - not ONE single one of them....
And, mitochondrial disease is a common thread throught the whole note.

We now have about 6-12 weeks to wait for the 'final' outcome.

Honestly, never have I wished with all my heart that someone who was as good as this doctor was MORE wrong than I am wishing right now...

It's been a really emotional day for all of us (me, Ralph and everyone here in my uncle's house) - and I am SO grateful to be staying with my cousin Vance and that his daughter Whitney and her fiancee Michael have been helping out non-stop...what a blessing it is.

I know this journey is only just beginning - and Ralph and I need to lean on each other and our friends and family for support through all of this - and the reality is that no one can be strong ALL the time.

Truly, I wish the drama would be over - that we could 'just know' and move on. I want Sasha to have some relief and's just SO unfair to her.

To our friends and family - THANK YOU THANK YOU THANK YOU for allowing us to lean on you SO MUCH over the past year as things have been unfolding with Sasha, for Will and for our family. Our lives have been richly blessed by having the support, encouragement, and love of each of you.

Right now we are having a hard time taking this all in and digesting parent wants to see their child suffer or have any issues - and when you are faced with the reality that things are 'not good' - it's a really hard to pill to swallow. What we wouldn't give for normalcy and the simple things in life....

We will have faith - we will have HOPE - and we will take Courage....
But right now - for a brief moment - we are allowing ourselves some time to feel sad and angry and scared....but soon it will be time to pick ourselves up and dust all that off and move on with fierceness and determination to give Sasha what she deserves - comfort, good health, and no limitations.

To all of you who are parents...please hug your children a little tighter tonight - enjoy the simple things, revel in the quiet moments....they are SO precious...

Blessings to you all,
Stefani and Ralph

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