Four Days

Ivy's improvement over the past four days has been the most dramatic we've seen yet! I'm not exaggerating, I'm stating this objective truth. I think there is finally a good balance on all her meds, and she's starting to get comfortable here. She's settled into daily routine, which allows her to sleep through the night, and be more alert during the day. Her vocabulary is coming back, she's forming more of her own ideas in conversation. She plays uno (with help holding the cards). In the physical therapy gym a string hangs from the ceiling. Ivy has been reaching for it everyday since she got here. It wasn't an exercise or anything, she just started doing it on her own. Yesterday, after two weeks of trying, she was able to reach high enough to touch it! Little accomplishments like these really boost Ivy's confidence. The last four days we've seen a lot more laughing than crying.

YOU GO GIRL!

I'm checking on you every day, and your just amazing! Keep up all the good work, and of course your wonderful "sprite"....Love from Nipomo...Paula

Ivy Rocks!

Ivy, I've been checking your blog every day to see how well you're progressing.
Can I just say that you never cease to amaze me? You are so strong! You hang on to that determination (not willfulness, Mom, but determination!) and remember that I told you being mad at all of this is good. Just remember to focus your frustrations on getting better and beating this! I would *love* to see you walk into the peds unit at Huntington and show off to all of us how very mighty you are!

I talked to my friend Heather about you. She's the one that plays with Tigers all day at the Wildlife Waystation. She said to let her know whenever you're ready to visit and she'll make sure you get the best tour!

I am still praying for you daily, that God will continue to give you the strength to overcome.

Rebuilding

It's taken two months, but now that she's medically stable and in the right place Ivy is able to focus on rebuilding.  She is working hard in therapy. We've seen a real change in her attitude toward working on relearning how to move. Everyday she wants to exercise! She is definitely favoring her right side. Her left leg is in really good shape, she is able to scan her eyes to the left sometimes, but her left arm is problematic. Contracture is the concern. She is able to relax her muscles but can't really purposefully move it. We're working with it, but how much movement she'll regain is still unknown. 

She's been standing up lately! She wears a pair of braces that lock her knees into place as she's lifted up by a special table. She get a huge smile everyday when she does it.

She's also in the process of fighting off a staph infection found in her blood and in a lung culture. They're having a hard time locating the origin of the infection.  The concern is that it may be related to her heart surgery, though as of yet they haven't found any such evidence. 

We had a meeting yesterday with all the departments assigned to Ivy's rehab. It went really well, the various therapy departments have observed progress over the 2 1/2 weeks she's been here. When we came back from the meeting she was doing this:

We've never seen her lift her upper torso this high!  She is almost sitting up on her own!

Thanks to Marco, Jessica, Kira, Paul and Fayhe for visiting Ivy over the weekend. And thanks to everyone who contributed to the quilt! Here it is at the old room:

...and in the new room:

Look for your balloon

Hi Ivy,
Just had to share a little story from Aubrie with you. The other day she and Janet were shopping at Trader Joe's and Aubrie was leaving the store with her TJs balloon in her hand. Janet said they needed to tie it around her wrist so it would not fly away. But being the 2 year old she is, she refused to give it up and in the argument, let it go....
As she burst into tears about her balloon flying away, Janet thought quick and responded, "It's ok Aubrie. We will just send that one to Ivy and she can get it." Tears stopped and a big smile came over her face. "We can send the red balloon to Ivy."
And now, every night since, as we put Aubrie to bed and she says her little prayers, she prays for Ivy and hopes she gets the red balloon. So watch for that red balloon, Ivy, cause it's filled with a whole lotta hope and love for you from Aubrie.
love ya Stargirl,
clint

Wolves back on the endangered list

My dear Ivy,

I just wanted to let you know that the Wolves are back on the endanged list!
The Center for Biological Diversity, EarthJustice, NRDC, Defenders of Wildlife and several other groups brought law suits against the Bush adminstration and won! The Bush adminstration announced today it will abandon it's defense of the decision to remove them from the endangered list.

I know you would be so happy to hear this since at least 100 wolves have been killed by hunters since the Bush administration stripped them of the protection of being on the endangered Species list. But the killing will have to stop now, thank goodness!

Ivy, you're looking fantastic and your progress amazes me. We can't wait until we can come see you and Melinda. We miss you both so much!

All my love,
Karen Moreno

Hi everyone! 

Last weekend, Jeff Nicklas and I got lucky enough to go down to LA and visit Ivy! It was such an awesome experience and so, so much fun. We were able to talk to Ivy, hug her, and share lots of laughs with her. We also got to go outside and enjoy some time in the hospital's beautiful court yard. Below is a picture from our trip of Ivy with Jeff and I. It was a beautiful weekend, and so so awesome. I want to thank Melinda again for letting us come down and hang out in the hospital with your family. 

Also, for those of you who didn't get to see the completed quilt, here it is! Thank you to everyone who went out of their way to help make it. It turned out amazing and Ivy loved it. 

Ivy, we love you so much! There are lots of things going on at school for you and I know everyone is super stoked to see you! 

Love, 

Lauren R.

Overdue Graditude

THANK YOU!!
The outpouring of deep love and concern shown to Ivy has been phenomenal. During the 21/2 weeks in the French Hospital ICU, there was a constant stream of her friends ranging in age from 2 to 80+…..These were all people whose lives had been touched in such a way that they wanted to take the time to show you, Ivy just how much you are loved and just how much you are missed.

People brought in flowers, books, meals and snacks….but most importantly they brought in the positive healing energy Ivy so needed to begin her long, hard and painful road to recovery. She wouldn't be as far along as she is now if it hadn't been for all of your support. We are forever indebted and will never forget what you have done for our family. THANK YOU ALL SO VERY, VERY MUCH.

There was never a time when there was fewer than 5 people with her and at times it was as many as 15. Everyday someone new arrived and many people visited numerous days. The list includes her classmates and their parents, SLOHS faculty, Pacific Wildlife Care volunteers, French Hospital administrators, doctors and nurses, Alan Roinstead Construction employees, family friends, neighbors, and even friends of friends. The list follows: Kira; Robin and Haley; Rusty, Doug and Russell; Chuck, Alan and Katherine; Alan and Kathy; Claire; Cecilia; Jessica, Chip and Kim; Jolene and Jody; Claudia; Dani and Bill; Connor; Kara, Yarrow and Sunshine; Marco and Linda; Sonja and Ken; Jenny; Jim V; Virginia E; Nick and Spencer; Mary, Sherm, Sheri, Paula, Richard and Lacey; Kyle and Thea; Mary; Charlotte; Elly; Kathy; Ray; Lauren; Stephanie; Clint, Janet and Aubrey; Peaches, Tara and Ali; Marty; Howard; Meg; Liz; Kelly; Kathy and Bob; Paris and Brittany; Jeff, Steve, Debbie; Bob; Dave and Lisa; Wendy; Kathleen; Jan; Paul and Fahey; Ellen; Robin and Larry; Unfinished Business; David and Anita; Jim and Bev; Kelly and Grace; Jim G.; Virginia F.; Shelley; Jo and Oscar; Lynn; Ann; Debbie; BJ; Marcelle; Tim; Harold; Dorothy; Jay and Elaine; Marilyn; Andrea; Jeri; Lauren R.; Lauren M.; Amber, Paula, Richard and Lacey.

If you are not on the list and should be included, please let us know. We want Ivy to know who you are. She will be, in good time, visiting her blogspot.

An enormous and deep felt thanks to all the doctors, staff and contractors at French Hospital and especially Randy. You were the rock….always patient when explaining the same thing for the ump-teenth time, keeping me grounded and encouraging me at the same time. You showed so much empathy and compassion in the many things you did for our family. Even though it was your night off, you came in to be our nurse on the night we received the diagnosis that Ivy would probably be in a vegetative state for the rest of her life, you organized the means to wash and re-dye the blue streak in her hair the night before her departure for Totally Kids, you never --- ever complained about the number of visitors who came wanting to see Ivy, you even helped other ICU patients understand why our joy was spilling out into the rest of the ICU unit and most of all ….. you were attentive to Ivy’s every need. A very special shout out to you!!!

One of the things Ivy loved to do was dance. It was an important part of her daily routine. Whenever I couldn't find her in the house, I only had to open the door from the kitchen into the garage and there she would be……Ipod in hand, headphones in ears …..dancing with a smile lighting up her face. When she is again dancing, and I believe she will be dancing again, we will be having a gi-normous dance party celebrating life. There will be live music performed by the local 50/60's rock band Unfinished Business. We will let you know the details when we have them.

Thanks again.
Love you all,
Melinda and Frank

PS From Melinda to my amazing friends who are leaving me messages on my cell….that is when it isn’t full….I so appreciate hearing your voices….it is a huge source of comfort to me. I just haven’t the energy to return calls….all my being is directed to Ivy’s needs and to her recovery. Please continue to call…again the messages help enormously!

Great Days

Hi Ivy. Well I finally joined the blogging world. I know I'm behind the times. I just mainly wanted to say hi and tell you that I love and miss you and hope you are having great days. I think about you everyday and pester Jessica with questions. I haven't gotten a blue streak, but does it count that I re-did Jessica's streak for her last weekend and had a blue thumb for a few days?

You are making tremendous progress Ivy. You are an amazing, strong, beautiful girl. I am so glad I know you. Thank you for being Jessica's friend. Thank you for being my friend. I love you, I miss you, hang in there, be tough and do what ever you have to do to get back here soon. We all miss you and can't wait to see you.

LOVE & BEST WISHES

I check your progress every day, and say my prays for you and your family everyday...You and your family are so very dear to us, and have been for 20 years. Your Mom used to let Greg & I babysit you. You always brought your little chair with you, so you could sit right in front of the TV. You were so sweet, we loved keeping you and playing with you. You'll have to ask your Mom and Casey, about some of the wonderful times we all shared, then you'll know how much love we are sending your way, today and everyday. Paula Lyon & Family

I Love Ivy!

Ivy is the strongest, most amazing person I know. She encourages me to be the best person I can be in so many ways, including (but not limited to)... loving and saving birds, learning about bats, using compostable cups, teaching me how to vermi-compost without killing my poor worms, using "green" materials, loving the bio diesel idea for her car, eating less meat, and being an altogether sweet and caring person.

This past June I had the opportunity to go with Ivy on our ASL (sign language) fieldtrip to Six Flags! Ivy, Shannon, Jason, and I toured the park for the entire day having fun and enjoying our time. I thought about how blessed I felt to have Ivy's company throughout the day. She spent the day texting lightning fast and telling me how excited she was to be a senior next school year.

I am thankful for the time I've spent with Ivy thus far and look forward to her recovery. I know if anyone can recover from what she's been through, it would be Ivy because she's smart, capable, and all-around amazing.

Ivy, the support around you is immense. Your parents are truly amazing, as are the rest of your family and friend supporters. I wish you the best and love you very much!

Transfer

As I write this Ivy is en route to her new temporary home. We went with a hospital rather than a rehab facility in case any heart related issues came up.  It's a nationally recognized hospital with an outstanding acute rehab facility.  Here she'll be seen by some of the top specialists in LA!  

Yesterday Ivy's doctor said she could have her trach removed as well.  With the transfer today, I don't know how likely that'll be.  It should happen soon though!

Ivy, I can't wait to here your voice. I love you.

jolene and ivy

I met Ivy last year, when I was in 2nd grade. Ivy is my big sister through High school Bigs. (Big Brothers Big Sisters Program). Ivy would come to my school and play with me every week. I had so much fun playing with Ivy, Conner, and Nick. Ivy and her friends came to my birthday party in April. We had to make sure we ordered a special vegetarian pizza, just for Ivy. I really love and appreciate everything Ivy has done for me. I love you so much!!!! Hope you get better soon and come home! Love and kisses, Jolene

Acute Girl

Things are progressing very rapidly in Ivyland. Or should I say Ivywood? Anyway, things are moving shaking. One thing that we have been trying to push for is getting Ivy to a point where she can have her trach removed. Not before she's ready of course, but we have been trying to get the staff to at least look into it. This would require a series of swallow tests to see if she can protect her airway as well as some other evaluations. Eventually it will lead to her being able to drink, then eat and if she were doing well with that for a while, the trach comes out. We were told last week that Ivy was not a candidate for a swallow test. They reversed their decision this week when they found out Melinda had given her some water already. She didn't know she needed a doctor to order water, Ivy had just asked for some and mom gave it to her. Anyway, days after not being considered for a swallow test, she passed it, and is now authorized to drink and eat ice! After she does well with that, the next step will be to get her eating liquid food, then solids.
This news, coupled with Ivy's recent talking, prompted the physical therapy physician to evaluate her again. He determined that she is ready for acute rehabilitation! So she has about one more week here in the hospital and then its off to another facility where she can get holy three: physical, occupational, and speech therapy for at least three hours a day!

Hi Ivy and Family:

We are beyond thrilled at Ivy's progress. I will never forget Frank, how you told the doctor at French that "Ivy is not a quitter," and you were so right on. I appreciate this Blog and its contributors for keeping us updated on Ivy's journey to 100% health, and Frank, Bless You, for keeping the Smith Family informed via telephone on how that sweet child is faring. It is very generous of you. My thoughts, hopes & positive vibes are directed at Ivy, Frank, Melinda & the rest of that lovely family on a daily basis. Grace and I can not wait to take that horseback riding trip on the beach when Ivy fully recovers!! Grace, age 9, wrote this poem for Ivy after I showed her Ivy's video on the Blog and updated her on her progress:

A Poem For Ivy

All around the world every person every place is looking at you and your smiley face You're a joy to every animal in the sky and on the ground You'll find them all if you take a look around If you look in the trees you'll find a hive of bees buzzing a tune for you They'll be getting the flowers ready when you take your first walk nice and steady then you might go home and cuddle with your teddy Your bats will be around you saying "hello" and then maybe they will put on a little show And when they are finished they'll smile and cheer and of course when they're done with that you will have no fear The snails will be waiting at their circus ear to ear You will be very proud but instead this one won't be so loud When you're all better which you almost are you'll be going to school hardy-har-har!

~Grace Elaine Power Smith, Age 9

From Grandma

Ivy's grandma, Pat wrote a few words to share with Ivy and all of you....


Ivy, on the day you were born we all saw a beautiful baby girl with black, curly hair and gorgeous eyes. It was love at first sight for your mom, dad, Casey and all us other lucky people. Little did any of us know that the beauty was inside as well as outside. As the saying goes, "beauty is not only skin deep."
You have touched so many lives, including the two hospitals and your stay in Sun Valley. Even the visiting pet Mai was reaching out to touch you with his paw. He wanted you to know he was there for you also.
Everyone is praying for you, in their own way, because we all know you have a lot more work to do for this crazy world of ours.
The other night as I was leaving I told you, "I love you" and blew you a kiss. You mom said, "wave goodbye to grandma" and you smiled and blew me a kiss. That was the best thing that happened to me ever. Thank You!
If I could I would change places with you in a heartbeat, but since I can't, please know I'm hear for you in any way that might help.
I love you so much!!
Grandma

Video

Here's some video of Ivy talking. Again, her voice is very weak at this point. She still has to relearn how to coordinate her tongue and lips.
Notes: In the first clip, mom is giving her water with a little sponge. In the second clip, she is talking to Marco. She says: "Hi Marco....yeah.....good."

Some quick background: Years ago, when Ivy was about five, there was a beer in the fridge. I don't remember how it got there, because mom and Frank weren't drinking beer. But it was there, in very back of the fridge, and it had been there for years. Ivy though, thinking it was a soda, fished it out from behind all the food, opened it, and took a swig. Of course after tasting it, she immediately spit it out. She had no idea what this awful substance was. Mom explained to her that it was beer and adults drink them. She couldn't understand why anyone would drink something so foul.

Word Up!

Ive gives us a wave!

Last night was a big night! Elle and I ventured over to the hospital after work to see Ive and to relieve grandma, who had been on lookout duty for quite a while (Melinda was getting some much overdue rest). Ivy had been sleeping most of the afternoon and woke up a couple hours after we arrived. She was more alert than usual right from the start. We had Aladdin on for the 43rd time (she refuses to let us watch anything else) and she was really focused on it. It was the first time I've seen her have the attention span to focus on the TV for long periods. While she was watching, I was giving her water. That's right, she's drinking now! We feed it to her via a little sponge, and she's able swallow it down, no problem. I couldn't help but notice how unusually alert she was. She was really moving her right arm around and giving us really deliberate facial expressions.
At a certain point, my fatigued brain accidentally decided to ask Ivy a question which didn't have a simple yes/no answer. I can't remember what I asked her, but before I could reformulate, she was mouthing an answer. Elle and I just looked at each other in disbelief. Ivy was clearly forming words with her mouth. We investigated further: I explained to Ivy that her trach was preventing her from making sounds, but if I blocked with my finger, she would be able to at least try to make a sound. I asked if she wanted to try, and she said yes. I put my thumb over her trach and told her to say "AAHH". I waited and finally heard a faint "ah". We couldn't contain our excitement! I quickly asked if she could try a word. I said, "Say mom." Again, a brief pause and I heard a very weak "Mom". Elle and I erupted into tears. Ivy smiled. Then the three of us set about planning a big surprise for mom's return. When mom came back, we called her close to Ivy. At almost a whisper, Ivy said, "Hi mom." Mom was floored, instantly sobbing. It was one of those rare moments of pure joy.
We spent the rest of the night, through the morning truly conversing with Ivy. Her voice is very weak right now, so it takes a while to get at what she's saying, but she incredibly patient. She can spell it out, if she comes upon a troublesome word. Ivy's attitude has been incredible throughout all this. She has moments of frustration and pain, but she is absolutely fearless about her recovery.
Today respiratory therapy added an attachment to Ivy's trach which allows air in, but not out. This enables her to utilize her vocal cords whenever she wants/needs to. She hasn't stopped talking since. She's been on the phone, teasing nurses, saying hello/goodbye to anyone who walks in the room.
Video to follow soon...

Changing the world

Since I started keeping up with this blog and the community of people who contribute, I have been trying to think of something meaningful to add. Something to share or inspire. The idea finally hit: it's called Ivy's Day.
Here's the plan in its infancy. As others read and come up with ideas, I hope you will share. Basically, Ivy is a girl with a passion to make the world a better place. Any of us who know her know the impact her smile, her personality and spirit have on us. She makes us better. But she wants more; to make this whole world better. She's into animal rights, "green" living, alternative fuels.....you name it. And what does she now have with all of us? A captive audience of people brought together as one community, joined by the common strand of Ivy. She has a platform from which to share her ideas and all of us assembled.
And so on to Ivy's Day. I propose that all who choose to participate look at their lives and find one or more things that we can do to make the earth a better place (see my list of Ivy inspired items at the end). Then, commit to doing it. On October 17th (Ivy's Bday), we either put our commitment on this blog or, looking to next year, write what we have done and how it has effected our lives. Let it be Ivy inspired and then write to her to tell her how you have helped her change the world. Each year we can do something more and maybe share the idea with others.
Wouldn't it by cool for us all to see Ivy as a stone dropped into a still pond and then we are the ripples created by her simple actions? So how can you help Ivy make the world a better place?
A list of Ivy inspired actions:
recycle more
convert to alternative fuels
mentor a child
eat less or no meat
use non animal tested cosmetics
use biodegradable products/soaps/cleaners
adopt an animal
abstain from dissecting animals
spend time with an elderly person
give money to a food bank or other responsible aid organization

Be creative. Do it for Ivy, for the world and for yourself.