Saturday, May 3, 2014

Updates on Drew, Nicole and Crystal

I have tripled the good news today!!!


Drew was discharged from St.Joseph and despite his legs being numb, he can walk!! I cant believe this kid has had 3 brain surgeries in one week, one in the brainstem, and 2 in the ventricle.  That alone is amazing... but wait.... he looks like he has not even had surgery yet, let alone 3! Look at him!!


I LOVE seeing a picture of Dr.Spetzler with the people he saves.  I so wish I could have a  picture with him. He is THE celebrity of all celebrity, come on!!   Drew is going to start outpatient PT  and OT, 3 times a week.  He has been reviewing his school work about an hour a day.  He gets very exhausted very quickly, with is so so normal.  His vision was not affected at all. He has some coordination problems, and he is numb from the waist down, but Dr.Spetzler is very confident that this is only temporary.

Crystal.   My poor Crystal.... As you know, she needed to go back on a breathing tube the day after the surgery. She was put on a ventilator and eventually a trach.  Its has been such a challenging 2 weeks.  Most of the time, daily update were positive, always a step forward , even if small.  But at the beginning of this week, she has kick some ass big time!!!  I was so happy one morning when I realised that she posted on her facebook all by herself.  Gosh even if  it was hard to read! haha ha  Been there done that! hahaha Dear ol facebook.  Later that day, she posted this picture of her walking!!     In the next 3 days, her posts has been more and more consistent and without any typos! She is a pro!

Yesterday was the surprise of all Surprise when her mom posted this:

"AWESOME NEWS on Crystal!!!! She is moving OUT OF ICU!!! WHOOPEE!!!! We've got a VERY long road yet ahead, but it is TOTALLY possible that we may be able to head home within 2 weeks!!!! I'm at the hotel to shower & get back to stay with her thru the night (she can't talk or call for help)!!! So...this is short, I'll update on the overall status tomorrow...her room number will be 6N47 (subject to change, but if it does, I'll let you know). And YES TO FLOWERS!!! (Several of ya'll have wanted to send her some to perk her up but she couldn't have them in ICU...NOW SHE CAN!!! Gotta run!!! THANK YOU FOR YOUR AWESOME PRAYERS!!!

YAY Crystal!! She wants to go home to her little girl so bad, and I have no doubts that she will!!  She still has a trach, but has been able to breath on her own without the ventilator for 48 hours now.  I am not sure what is going on as far as therapy etc.  I really hope that she can get into the acute neurological rehab there at St.Joseph.  That place is simply amazing. I said it before... even with all my limitations... this was the best weeks of my life!!   Its amazing to find yourself unable to feel, or move or walk, or do anything, to walking out of there!!!!  I will keep you updated on her rehabilitation plan. So far, I have not heard that she has major physical limitation and her Neurological assessment were great!!! 

That brings me to sweet Nicole!!!  She still has a trach and peg in her stomach for feedings. She was in intensive care for the last 6 weeks, but she was finally moved

to a regular room on Thursday once she was breathing on her own. She is at Miami Children's Hospital.
!!  These news cannot be more welcomed.  Its so difficult to imagine your loved ones like this... but I know you understand how awesome these progresses are.

As you can see (or read haha)  these are all awesome, awesome news, and once again, prove that no matter how many doctors try to keep things realistic and tell you that there are no ways you can survive a surgery of this magnitude without major deficits, or that you can survive a horrendous brainstem bleed/stroke, there are NEVER no way that you cant prove statistic wrong!!!

It is so uplifting to follow these people's journey and witness the victories. Its a long journey back, but I have no doubts that not only Drew, who had no complications whatsoever after 3 surgeries, but Crystal, and Nicole, will recover and astound Doctors just the way I did. The power of a hopeful, happy mind is absolutely amazing.  

I thank you all SO much for keeping these brave people in your thoughts and prayers.  You are the BEST.







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