WELCOME BACK!!!   Hope you had a blast friday night, it sure seemed like you were when we were speaking!!!  -giggle-

We go home tomorrow night!!!!   It will officially be 48 days in the hospital between the icu and rehab. Every single patient on the 6th floor where she is at has come and gone twice, yet she remained. And now our day has finally arrived. She is no longer the sick little blob of jello that talked funny and couldnt even feed herself when I arrived, she is now the vibrant young woman that is my daughter and MY HERO and INSPIRATION. We still have a very long road ahead of us and her progress is extremely slow but she IS improving and will continue to do so!!!!!!!!


Now I have a whole new worry ahead of me, the 5 hour journey home in my jeep with paralyzed girl riding shotgun. I am never afraid of traveling, not even when I pulled a 12 foot overloaded trailer with my jeep from Florida to California back in 2008, but this trip scares the hell out of me, I have precious fragile cargo this time.  Pray for no traffic and a smooth ride!!!!


 

yes!!!!  That is her thumbing a ride at the handicap bus stop outside of the hospital on Monday morning.  She is tooooo funny!!


It is so amazing watching her body wake up and come back to life, even the smallest things such as her smile returning, to her eyebrows moving or her eyelids being able to finally close after weeks of paralysis... then the larger movements, her hands, arms, hips (little wiggle) and now her hamstrings... it is all so amazing.  She is still considered a "full assist" patient since she has to be lifted with the hoyer lift in and out of bed and her wheelchair. she has alot of movement back but still a tremendous amount of nerve damage so she has absolutely no strength, some days it is hard for her to hold a small cup to drink out of.

My daughters progress in pictures and video.......   

We should be discharged and going home today or tomorrow, just waiting on her equipment to be delivered to my house, her and the baby are coming home with me

the picture order below is:
1) BEFORE Guillain-Barre Syndrome 2012
2) In ICU, paralyzed from head down.
3) Rehab, in the hoyer lift getting ready to go to Physical Therapy.
4) Holding the baby with assistance for the first time since this whole illness started.
5) 6am Monday morning March 25, 2013 at the bus stop outside of the hospital being goofy 

. . . . . . . . .

THANK YOU!!!!!   xoxoxoxox


We are set for discharge on Saturday instead of friday, I requested the extra day so I can avoid the friday traffic for our 5 hour drive back up to central Florida.


As of today we were able to secure the one piece of equipment her insurance would not cover and that is her hoyer lift which will move her from her bed to her wheelchair etc. The rest of her equipment, hospital bed, wheelchair etc will be delivered sometime between now and friday.


I am so nervous but I have faith we will be fine. Now we just wait for Saturday to come and pray the ride home goes smoothly. 


 

Just a little update on my precious, beautiful, strong, courageous, fighting daughter. There's not much to report as far as the paralysis, it's the same, from the head down. Her hands (from the elbows down) have regained a lot of movement but absolutely no strength. She has excruciating pain in her calves, feet, hands, elbows and on her head in the temple area, they have upped her pain meds a few times and added additional meds, all in all she has 12 medications prescribed to her but of course hospital staff allow her to refuse the ones she doesn't want to take. She is amazing in Physical and Occupational therapy and gives it 100% effort on her part, she has a great attitude!!!! It is going to be a long journey and this past week the doctors told us that she will be going home in pretty much the same condition she is now with the exception of a little more upper body strength.  But she is strong and determined to beat this beast, Guillain-Barre Syndrome!!!!!! ♥ She may not walk out of the hospital when the time comes but SHE WILL WALK AGAIN!!!

Oh and the respiratory doctors have released her! She is done with that therapy. Still having an issue with low blood pressure, low potassium, high liver enzymes and she has only ate 3 meals in the past 6 days but today and yesterday were those meals so hopefully her appetite is returning again.  It seems like everyday we either take 2 steps forward and 1 back, or some days it is 1 step forward and 1 back.  It's going to be a long haul....   please continue to keep her in your prayers.

I am just going to copy and paste my facebook updates here also.   I thought I would have time to sit at the computer each day but it just hasnt been the case. Every minute is devoted to her.

Ali is in the Rehab hospital. She has limited use of her hands and a little bit of range of motion from the elbows down along with "some" movement of her shoulders, the right arm being the strongest. Her face, trunk and legs are still paralyzed. She had developed an infection and more recently she has gall bladder issues and her liver tests came back high so a gastroenterologist has been in to see her and is watching her closely. She is in excruciating pain, she's very fatigued but bless her little heart she attempts to do anything they ask of her which isn't much, hold a spoon, hold her pill cup, etc, very basic stuff but she is my hero!!! I've taken over caring for her from the minute I arrived and oh boy what a team we are, a pathetic team at times but we get things done.

Even though I was well aware of her condition every step of the way before I got here, nothing could have prepared me for the reality of it, I feel like I have been going on adrenaline only and haven't allowed myself a moment yet to step back and take it all in. I am afraid if I do I will just explode.  The nurses and staff are amazing!!!!   They brought a bed into her room for me and I am staying with her 24/7. If I take a 2 minutes break to step outside Ali is on the phone ushering me back to her room, it is quite adorable. Before GBS struck her she could be quite a demanding little chit, but here and now she is so full of love and sweetness. I cannot express how proud I am of her and her determination to fight this.   

And the video below is for my special someone here, he will know why!!! I already told her when she is up and walking that her and I need to have someone video us doing the happy dance together. 

Thank you!!  xoxox  Starbucks it is Sean. But not for me, I'm going to take it to Ali !!!  I called her immediately last night and told her about all of this, she cried!!!  With her voice shakey and as best as I can describe it, happy crying, she said "really Mom? A total stranger just gave us this?" She spoke in a tone I had never heard from her before. So, not only is she getting her Mama but she is getting her Caramel Frapps too!!!!!   It's a happy day.  Whats bizarre is I notice a little "pep in her step" today. She is of course in a lot of pain but I think knowing that I am soon to be on my way, and it is definite, I'm thinking it was a HUGE relief for her.


    Thank you just doesn't seem like enough. 

I am sitting here in tears right now!!!!   Lisa and I were just sitting at her kitchen counter, her husband watching tv a few feet away, I heard a sound come from my laptop, an email sound, I casually took my time checking and then all of a sudden I am barely able to speak, hand over mouth, tears pouring from my eyes, checked, double checked, triple checked and every time I saw the same thing. I thought for sure it had to be a glitch, no way could one single person be so unimaginably generous and kindhearted, but it is true!!!!!!   One wonderful, caring, loving, kind, generous man donated $1,000 to help me get to Ali!!!!!   I am beside myself right now.


All I can say is THANK YOU THANK YOU THANK YOU!!   You will hold a place in my heart forever!!!!   You made it possible for this Mom to be with her daughter when she needs her more than she ever has!   THANK YOU SO MUCH!!

I had some spare time tonight and just thought I would pop my head in and say hello.  It's been rough in my world the past couple weeks. My daughter, Ali, has been in the hospital in icu for the past 10 days, diagnosed with Guillain-Barre Syndrome. She is trapped within her own body and it is heart wrenching not being able to do a damn thing to help her except love her with every fiber of my being.  Life sure doesn't give us any breaks, just one blow after another and it never seems to end. But, we endure!!!!

Anyway, just thought I would pop over here tonight and read a bit and say hello....    I do hope you are all doing well, many of you I keep in touch with on facebook and for those of you not on facebook I do miss you! This website is never far from my thoughts even if I am not on here.

 

I'm going to send this guy a Christmas card.  Here's how it's going to read:

"Dear Mr. Leisure Guy: Wishing you a very Merry Christmas from this beautiful open meadow by the lake I'm sitting at writing this card.  Perhaps you'll be taunted by color pictures of a similar one on the TV you watch from your solitary air-conditioned metal box where you may spend decades waiting for your final destiny.  While you take one of your leisure naps, you can dream about me walking barefoot along a Hawaiian beach (where I'll be next week) digging my toes in the sand and feeling the surf wash over my ankles.  So I'll raise my wine glass and toast your metal-boxed five senses and the limitless indulgence they'll never again experience.  Have a nice nap!"

"From the Self-Righteous Clowns at off2dr.com"

...cruelty has it's place from time to time

 

Joe, I am playing catch up tonight and came across this from November, this is hilarious!   We should have all sent him that postcard! in fact I might do a Happy New Year one.   I wish I could give you extra Karma points for this one.   

I can totally relate to the way this man was feeling because I have been living it. It flows over into your everyday life and is all-consuming. The 2 years I was out in California was peaceful because I left the family and friends behind, out of sight so I didn't have to deal with them and they didn't have to deal with me. And nowadays when I am "wronged" no matter the reason I totally flip the f*ck out.  How dare they!  Don't they understand what I have been through?!?!? 

I'm glad he found his peace.   I'm still searching..

That is hilarious!!!                      

    screw PTO..     

PAPASTALKIN!!!! ??   

 

I really need to come on here more often, I just realized you changed your name again, OMG   I'm laughing so hard I cant swallow my coffee!

Happy New Year everyone!!!    I hope the new year brings you all happiness and prosperity!!  xoxoxox  Love You all!!