It has been a year...

On September 3rd of this year Elodie was getting casts done for new braces, last year she was having a biopsy of her tumor. It is amazing that it has only been a year. It seems like an eternity, because of everything that has happened since then. I have been particularly sensitive to all of this lately. I guess it has to do with me coming off my antidepressants and the thought of where I was a year ago. Standing over my little lady in a hospital crib, waiting, and waiting, and waiting to hear the most beautiful word in the English language...benign. I did hear it (thank the lord) and had everyone repeat it to me, so it could forever sing in my mind that she was going to be fine. She will get those new braces on Friday.

She is so fine. She is hilarious and loving. I think she is really good at making all of us feel loved by her. She cuddles and compliments and tries to get everyone to smile. She can use her walker like a champ now and she is getting bigger braces. The other ones, pinch her cubby little legs. While waiting for the new ones, we have been working on more abdomen exercises to help stabilizer her so she isn't relying so much on her hands. It all depends on the day if she is willing to not use her hands. I know she can sit and kneel without them, I have seen it. When she is tired she cheats and puts her hand down.

We haven't any news on the wheelchair. I have no idea what is going on there. I think I haven't investigated it, because I am tired and I am also just nervous about it all. My emotions on the subject run kinda high. I know I need to tone it down and have a better sense of humor about my daughter being in a wheelchair (or whatever), but it is hard. I have to stop trying to be the champion of the world and just be the champion for my daughter. I am doing my best. But I need better skills, I have no idea where to go for help on the subject. I don't know what I would do if she was made fun of for it, I would be crushed. I need to be stronger, as strong as she is. I am so glad that child was born with a natural wit, and smart-assness that could go up against most adults. She is too stubborn and tenacious not to completely conquer the world.

I need to breathe, deep, deep breaths. Maybe I should quit worrying about where she will be fine and turn it in on myself. Vanessa will be fine. Fine. Fine. Fine. This must be how Sally Field feels in all of her movies. She always has one of those frantic "I'm okay going insane" speeches and things work out okay.....even if she does pick up a few more personalities along the way. Oh...boy.

They are Leaving on a Jet Plane....WAH!!!!

The unbelievable is about to happen. My world as I know it is going to halt for 10 days. I will be made to entertain myself for hours and hours on end. There will be no schedule, no meals to be made, no laundry to be done, no stories to read, no appointments to run to unless I choose to do any of those things. What is going to happen?!? My kids are going to Florida to visit their grandparents for 10 days!!!

I am a bundle of nerves and excitement. Just thinking about it makes me shake inside and breathe heavy heavy sighs. Mostly I am excited for my babies and their grandparents, they have never had them at their house before. The last and only time we went to Florida I was recovering from my first eye surgery, that was like 2004, so yeah no babies back then. Joaquin is so thrilled to get on a plane. Grandma Julee sent them a book about going on vacation and we have been reading it everyday. He asks me nearly every time he hears a plane, "Do we go on da airpane today? We see Gampa, Gampa?" He calls them both the same thing. I hope that the tornado twins are good for their grandma. She is taking them on the plane. Camden was supposed to, but he doesn't feel well enough to fly. It is better that way. They are usually better for other people than they are us anyway. I have left them before, and their grandparents have watched them here, but never ever have I been that long in this house without my children. When I think about it, I have to close my eyes and clench up my hands tight to force back tears. Gulp. I really can't wait to see the pictures and hear their little voices over the phone telling me about all their adventures. I hope this can become a tradition for them. Florida is such a different place than Utah (duh) and I would like them to have a very close relationship with their grandparents. Even when they are older I would like them to spend entire summers there with them. How awesome would that be for a kid? I want them to stay close to their grandparents their whole lives.

I still have to pack for them. Man, I guess I have been putting it off because it is going to be so hard to be in this house without them. I really have no idea what I am going to do with myself. On Saturday I am going to Lagoon with friends. That is going to be super fun. I haven't been to Lagoon without kids for years and it is a lot more fun when you don't have to push a stroller everywhere and change bums on the dirty Lagoon changing tables. Bleck! So yeah, that is it. Those are the only plans I have so far. I kinda feel pathetic that I don't know what to do...I want to do something and not just waste my time sleeping in and wandering around my house unshowered, holding a teddy bear, and asking the cats if they will let me dress them in Elodie's clothes. I have this image of myself in dirty pajamas, hair oily and knotted, eyes sunken in, yarn tangled around my feet, dried mascara clumps in the corner of my eyes and nothing to do but cry. Okay that is super dramatic. But really I am afraid of being without them. They are my little rays of sunshine that give me such love in the morning I can start the day smiling. Ugh. I am going to miss that. Also I have them pretty scheduled mostly, give or take a half and hour and that is going to be gone. It will be interesting. I plan on getting to know myself and new friends a little better. So if I call or text you, please answer. Take pity on this lost little momma and help me fill my days with love. I will try my best to not feed, clean, or mother you in anyway, but if I do, please let me, I will be going through lovey dovey withdrawals.

Elodie is a Badass!

Just got back from the latest Elodie check up with her Shriner's doctor. Other than it taking absolutely forever (nearly two hours!!!) it went great. What was not great, was hanging out in a tiny room with two very sleepy, very hungry, pre-schoolers trying to see who could whine/cry the loudest to Mom. Joaquin won of course. I wonder how many years have been taken off my life by just sitting in tiny waiting rooms with whining crying pre-schoolers. Where is the data on that one RealAge.com? I am guessing, four at least!

The orthopedist said that we are doing everything we should to keep her growing strong. We are to continue with physical therapy, get the wheel chair and walker and then wait and see. Also she wants me to continue with her massage so that her feet don't turn in and contract. Without that they could be like the wicked witch's in The Wizard of Oz when Dorothy takes the ruby slippers off. Not good. We have to be careful that she doesn't get injured on her legs, she could have a sprain or cut and not know it. We just have to be aware and not to let her get too crazy when she is playing.

Elodie also saw a neurologist to discuss what kind of sensation she has in her feet and legs. She examined her reflexes and said that there is actually quite a bit of response, so her decreased sensation might not be as bad as we first thought. She was also very hopeful about us being able to potty train Elodie in a regular way. Some kids that are paralyzed can't feel down there when they have to go, so they have to be catheterized and use enemas and whatnot. Ugh. But Elodie has periods of dryness and she has never been a constipated baby, so the out look on that is great. Phew.

The doctors today were very hopeful about Elodie someday learning how to walk. She will need assistance, but they even think that she won't always need assistance. Woo-Hoo! I would trust these doctors over anyone else. They see kids similar and more severe to Elodie day in and day out and can spot the ones that really want to move and groove. Elodie is for sure one of those. She has been getting into so much trouble lately. She has been acting like a two year, a regular bitch ass two year old. It is awesome! Just love her to pieces and I am so happy that she is developing and growing up. It may not be the "normal" way or always an upright standing-walking sort of way, but it is her own and she is rocking it! Who cares what "normal" is anyway when you are that freaking adorable? If I do say so myself...my kid is cute.

Some Things Stay the Same...

"I'll need you to write the patient's full name here," the receptionist said as I wrote down Elodie's enormous name. "Oh Elodie, that is such an adorable name."

"Thank you." I said, followed by my daughter's sincerely little parroting of my words, "Danku!" She is terribly polite and she cracked the receptionist up. I can't help but brag about her, she is awesome.

We didn't have to wait very long before the nurse came to take us back to the MRI waiting rooms. Elodie's nurse was named Christy and she instantly remembered her from last time. While waiting I got some very sweet text messages from friends encouraging positive thoughts and energy. It was very appreciated, because this time I was not being very brave. My heart felt so heavy and my mind was so distant from all the unknown possibilities. The nurse practitioner came in to hear the history...on and on and on I went. I have told this story so many times it doesn't feel like it really happened to us. It feels as if it was a movie I saw, or a story I read. That is good I guess, to keep it far from me in times such as this. It helps to not collapse into tears.

Elodie's hands and feet were really cold. The nurses took four tries to get an IV in her. FOUR!!! They finally got one in her foot, and it was sad. She really didn't flinch too much, she said ouch, but that is about it. It really made me realize she just can't feel very much in her feet. There is feeling, but it is slight.

We were then shuffled over to the MRI room. Elodie and I had to sit in a chair outside the door when she was getting sedated. I have metal in my body, so I can't be by the giant magnet. I held her in my lap as the nurse gave her the medicine to put her to sleep. She fought it pretty hard for a second. Her head rolled back over my arm, her little eyes met mine and she kissed toward me, a sleepy loud kiss. Tears fell heavy and hard from my eyes. Elodie is the sweetest little girl. She loves to love and cuddle, it is the best thing ever. I handed my baby to the nurse and kissed her good-bye and in my head told the tumor to fuck off and quit making me cry. I watched on the monitor as the nurse laid Elodie on that big machine. It was hard to breathe. I went down to the cafeteria to force feed myself breakfast. I had no appetite, even less than usual. The breakfast was actually really good. French toast and bacon. Bacon is the miracle food, you can't cry when you are eating bacon. Seriously, you can't.

I went back to the recovery area and waited for my baby. I sat there for another twenty minutes or so getting more lovely text from friends. Ah technology, I love it. When the tech brought her out it was like slow motion. She looked so tiny in his arms and felt so lovely and warm when he sat her on my lap. It didn't take long before she was awake and demanding juice and crackers. This time at least, she can tell me more of what she needs. Her speech is really good. Elodie was all finished with her post vitals and we were able to leave. She charmed the whole staff again before we left. In her drugged state she was blowing kisses, saying thank you and good-bye. She is ridiculously sweet.

The next day we headed back to Primary Children's for her results. I felt pretty okay about it. I got all my crying done the day before. When we went into the oncology office, they all remembered Elodie. "Oh it is that cute curly headed girl, look how big she is!" That is so cool. They see tons of people going in and out of there and we were lucky enough to only been there a few times in the fall. Some kids are there every week being pumped full of cancer killing chemicals. Sigh.

Turns out the tumor has stayed the same size. Not growing or dying anymore. Stagnant. So that is really good. The spinal atrophy that the tumor caused is still there. It looks like a little dent on the scan. What that means is that she still has the nerve weakness that is causing her legs to not move very much or have much sensation. The doctors do agree that she has had mad improvement. There is no surgery or anything else we can do, so far, to improve her skills. We just have to keep on keeping on and hope that she gets more movement and sensation. She will probably need a lot of assistance for a few years. Wheelchair, braces, or crutches to help her walk and get around. I don't know why, I mean I knew all of this, but when Dr. Fluchel said it, it once again broke my heart.

I don't really think about how Elodie can't stand or walk until I am confronted with it. I will see a baby about her age cruising around the store or wherever and remember that she can't. My heart does sink, I am only human. I do morn that she probably won't be in dance when she is four or be able to ride a bike. I do love her just the way she is and will in no way put any pressure on her to do what she isn't ready for just yet. She will be just fine and so will I. This is her challenge and she is facing it head on. I love seeing her in therapy. She gets so fired up to move and she is doing so well. There has been great improvement and I know she is just going to get better. I focus on the progress and not on what she can't do. She is amazing and so sweet and smart. I can't take that girl anywhere without her getting compliments on how cute she is. It is rad hanging out with her.

She has an appointment with the orthopedist on the 23rd, so we will see what she thinks about Elodie's progress and if there is something more we can be doing. I am so thankful we got hooked up with them. It is the best place for her to grow and develop under their very experienced and watchful eye. So we are still in the holding pattern, doing our thing and being cute. I will blog about the 23rd visit and with hope and love everything will be a-okay! Elodie is a fighter, a fluffy panda with hidden powers of fierceness! I am so glad she is that way, she helps me stay positive.

Elodie Evolution Evalution at the CDC...

She did grrrreat! Tony the freaking Tiger couldn't have said it better. My Elodie was in a cheerful mood and showed Dr. Winter and Scott, the physical therapist at the Child Development Clinic, all her tricks. She did sorta started to loose it in the end, but hey, they always do at doctor appointments.

So the plan is...We are going to stay on track with the physical therapy at DDI and Shriner's. Scott also suggested we think about getting her a wheel chair to use as a tool for exploration. Elodie probably wouldn't use it all the time if we did get her one, just when we where out. She could really move and explore with other kids. We will cross that bridge when we come to it though. I plan on asking Mark, her Shriner's PT when we go there on Friday what he thinks. Apparently, kids younger than Elodie learn to navigate in a chair just fine and she would still be gaining strength through therapy and being down on the floor crawling around. So yeah...not a bad assessment. She is also going to have another MRI in February to make sure that the tumor is going away (yeah!), or staying stagnant (meh), or if it is growing (God forbid). Those two days are going to be tough for me, find me and hug me tight. I have already prescribed myself deep breaths and yoga.

My day was totally made when Dr. Winter, a very excellent doctor and just all around cool person, said that I was smart and a good mom. GAH! That so rocks! She said I was so calm, level headed and easy to talk to. That made me feel like the cat's pajamas. I respect this woman so greatly. She was there through all of Elodie's tests, even though she didn't need to be, early on in the process her part was finished. She really helped me feel that she cared about us and that I was not alone in all of it. She was there and that can be rare for a doctor. It was a good appointment all around. And Camden came! So this time I really wasn't alone! We had lunch afterward and that was really nice. Joaquin was good and followed directions. It is rad when everyone is doing their thing and getting along. That makes me feel like, "Yeah, maybe I am doing a few things right, and maybe it is going to work out like I hope." Here to having really cool kids!

The Lonely Day of Gross...

Better times have been had...

Camden forgot to change Elodie before he put her to bed last night. She leaked everywhere! It was literally from head to toe she was soaked. First bath of the day and first load of laundry was due to stinky baby skunk pee and Daddy.

Really I am as well to blame in the lonely day of gross. Next gross thing that happen... I was eating a no-bake oatmeal cookie and gave a tiny, tiny, tiny piece to Elodie. They have peanut butter in them and she is allergic. She has had a Reese pieces with no problem, so I thought maybe she had grown out of it. Her lips did get a little puffy and a bit red but that was it. I gave her some benadryl and thought maybe she is getting better. That was it, until I took my eyes off of her of course. Joaquin and I were in the kitchen and I hear a heavy thick cough. She threw up her entire breakfast in her lap, hit nothing else but herself. I quickly grabbed her to put her in the tub, as I did she turned her head and lost it all over the coffee table and rug. Actually that was a good thing, because if she would have turned the other way, she would have hit the Christmas tree. That would have been the end of Christmas for me all together. Second bath and second load of laundry was due to my stupidity and peanut butter puke.

Then they had a nap. Yeah! After cleaning up all of that I was in need of a break. I did get a little rest. I hid in my blankets and wished for a warm doggy to snuggle and tell my troubles to. No such luck with that coming true, before I knew it the disaster twins were awake and hungry. I go in their den of preschool evil to be hit in the face with the terrifying stench of dirty diaper. It was Joaquin! He hardly ever has accidents, he has been so good about going to the potty. I gave him a bit of that cookie as well. He is also allergic, but not as severe as Elodie. So that is how the rogue peanut butter decided to leave his tiny body and he couldn't wait to yell for me, poor thing. Gah. It was so explosive, so gross and so everywhere. Third bath I gave, third load of laundry due to again the stupidity of me.

Extremely challenging mommy day and like I said, mostly my fault. I just feel so lonely in all of it sometimes. I love being home with my kids. It is a really hard job to do. So the next time you see one of your SAHM friends, please give her a hug and a kiss. Take her out of the house in a cute outfit to a movie, dinner, drinks, or give her copious amounts of xanax or weed. Make her feel like a girl and not just the cleaner of bodily functions and mean babies. Believe me, she totally needs it, even though she caused it herself and she is totally stupid. Derp.

Ferociously HAPPY!!!

Elodie got her braces today. Woo-Hoo!!! The go up to her thigh and have a locking hinge. (Don't you love that word? Hinge.) When she is standing the lock slides into place and the braces support her knees so she can stand. After her fitting, I put her down in the elevator and she stood up happily holding onto the rail. She giggled as she saw us going up and up and up! She got a walker to help her get around. She was so excited, she even took a few small steps. I was seriously loosing my mind when she did it! There were three other families in the therapy room and I was totally making a fool out of myself, clapping, cheering, even some jumping up and down. It is so echoey in there, the whole hospital probably heard me freaking out. Joaquin was helping too. He was right there with me saying, "Come on baby, walk!"

I took this picture with my camera phone, so that is why it is not that great. She really took to the braces and the walker. I am sure she will dig this walker more than the pony one, because in that one she can't move the wheels as well. She was exploring and curious which is exactly what we want her to be. She didn't fuss or anything. I am so proud of her and thankful for what movement she has. I love going to Shriner's because it really helps put things in perspective. Today there where a lot of older kids in the orthotic department, most of them with much more serious issues than Elodie. Those kids and their families are such an inspiration to me. If they can do it, so can we, this is how it is and I am grateful.

That reminded me an annoying experience at Elodie's 18 month check up last week. Her regular doctor wasn't available so we went to the physician assistant. It was a routine sort of visit, nothing serious to discuss. She pretty much just needed to be measured and needed her shots. But the PA, insisted on being an a-hole and talking about whether I had fears that Elodie was going to be in a wheelchair all her life and not get any dates in high school. Pfft... Can you believe that? I mean sure, it is a concern, but I don't think or focus on it. I was more fearful that she had cancer or something deadly than whether or not she was going to be serious make out material in high school. Lame. Wheelchair or not, she is my daughter and I love her just the way she is, and her good friends will too. She is super cute, so I know that dates won't be a hard thing for her to come by. I was so pissed but I was respectful to the a-hole. Gah, some people. But he was pretty old, so I know he grew up when they used to throw disabled kids in institutions and forgot about them. I know some people have a problem with kids that aren't totally perfect, but I sure as hell don't, mine or anyone else's. It was so lame that a medical professional could be so clueless. My mama lion almost came out and scratched his face off. I guess I need to get used to that sort of ignorance. I don't mind answering questions, it is just the assumptions that boil me up inside. My Elodie is probably the smartest, most well adjusted kid I know, and I know that nothing is going to knock her down. Except maybe if she doesn't have her braces on and her brother pushes her over, then she will fall down. We must get used to that as well.

My Lil' Pony Walker...

Elodie had her first physical therapy appointment at Shriner's on Wednesday. Her therapist is named Mark and he looks similar to my high school friend Jay Haslem. I liked him, Elodie did too. He has a different therapy philosophy than the other therapist we work with and I dig that. Good to try things for Elodie from all angles.

All brains work differently, of course. He thinks it is better to see how Elodie is going to move and go from there, rather then try to teach her a way to move that might not be efficient for her brain. Mark thinks that it is more important for children to adapt their skills to their skill level so tasks can be completed. He thinks that trying to teach a child to move traditionally might not work all the time. Mark also thinks that Elodie's army crawl is fine and he doesn't want to focus on making her crawl traditionally. She has shown that she can get around just fine to explore and get in trouble. He wants to strengthen her legs and abs more to get her to stand.

Introducing the Pony walker! Pictured above, Elodie can stand in it! She is completely supported and her little feet touch the ground. It is designed so that she can push off the ground with her feet and roll along. She has pushed of hard once during her appointment, but now she is sort of pushing a little bit, like little twitches. It is amazing! I am watching her in it now. She is standing, doing her little pushes, and watching "Finding Nemo" with her brother. My eyes are glossy with tears. We are just borrowing the Pony Walker for a little bit to see if it helps her. I think the little pushes are going to help her get strength in her bum and thighs. Also I sit behind her and cue her legs by moving them in a walking motion and make a noise so she can connect the two, it sounds like "Pashooo!" Hopefully we can keep it for longer and maybe she will take her first steps in it! Just to see her moving her legs at all is so exciting. She is so tall when she stands, it is the cutest thing in the world. Mark said that once she gets her AFOs she will have an easier time pushing with her floppy little feet. They will help keep her joints ridged.

I am so happy that she likes it. I was scared it would freak her out, but I am really learning that this girl loves to try new things. She plunges into stuff with all the confidence of a much older kid. Elodie has a "can do" attitude. It makes me so proud. I hope she keeps that forever. I think she gets it from her daddy. She works so hard at everything she does and I just have to teach her something once and she's got it. I will do my best to encourage her sense of adventure and feist, having two rambunctious older brothers will help too, I'm sure. I yelled at Joaquin a little while ago to get his foot off her head, and she bit him. I think she will be just fine.

PS- The reason why the pictures have weirdo lines on them is because when we went hiking a few weeks ago, I fell on it. I was holding Joaquin, walking down a hill and slipped, the camera was in my back pocket. I crushed the display. It still works, but we can't see the pictures and now weird lines. Meh. Maybe we can get a new one at Christmas, but if not we will live with the lines.

Shriner's Meet and Greet..

Yesterday Elodie had her first visit at Shriner's Hospital. Walking into that place was almost magical. It is a beautiful small hospital. It is so clean! The cleanest hospital I have ever been in, all the toys and books looked brand new. I think people are really grateful to be in there, so they take way better care of it than a regular hospital. While we were getting registered, Elodie checked out a dog counting book, with all sorts of puppies in it, she loved that.

We met with Dr. Woiczik, (Y-check). She was very nice and petted Elodie's head. Elodie is getting more and more wary of doctors. That is something I don't know how to fix with her being so small. Now when she lays on the examination table and hears the crinkly paper she gets nervous. Dr. Woiczik did an evaluation of her skills and will be following her progress. She ordered physical therapy for her, and Elodie can go as much as we would like her to go. Elodie was also fitted for some AFOs (ankle foot orthotics). They are braces she will wear when she is getting around that will help her ankles and feet stay in the right position, just like her Happy Straps work for her hips. The hope is that she will get more strength in her feet and ankles if she can learn to stand on them in the good place. She can't stand without help yet. We got to pick out the color and pattern for the velcro and foam. Elodie choose black with little purple, pink, and teal flowers and purple velcro. The ortho tech casted her feet and legs to get an exact fit. She was so good during that process, it took a long time. She will get the braces in a few weeks when they are made. Ahhh....Her first couture item, specially made for my little miss. I told her once she learns to walk I will buy her tons of shoes to wear. One for every outfit if she wants, she deserves it for working so hard against the lump's damage. We are going back on Wednesday for her first physical therapy appointment. We checked out the physical therapy department while we were there, it is super cool! There are so many things to play on and with, she is going to have a blast. (fingers crossed) On Wednesday we will get her on a set schedule for her therapy.

The really cool thing about this hospital is that they will keep tabs on Elodie until she is eighteen, if she needs it. She is in the inner circle. She can get physical therapy, orthopedic braces, x-rays, and medical care all for free. We are so priveledged to be a part of it. The only thing is that this hospital operates on donations. I worry that things that could help my girl could be cut due to the state of the economy. I guess there are big strokey beard meetings going on about that very thing. If you can please donate to Shriner's and other worthy charitable causes. They are tax deductible after all and every little bit helps. If you can't send money, they are happy to take books, toys and time. It really is a lovely place for children. It is so welcoming and pleasant. I am so thankful to have Elodie there. Yeah Shriner's!!!

Post Op what not....

Don't those words above sound great together? Anywhoooo..... My girl had her post op visit with Dr. Rollins today. It was pretty uneventful. She had to have a chest x-ray to make sure that she healed up fine on the inside. She did. But she freaked out when I put her on the x-ray table. The girl lost it. I know she remembered the last time we were there. She had a chest tube and it hurt so much for her to be picked up and moved around. She is smart, nothing gets by her. She was completely panic stricken! Elodie screamed! That is totally weird because she never, never freaks out like that, especially in public.

Trauma aside, she is fine. Joaquin and Monro came with us. Joaquin was very interested in seeing the bones of his little sister. Her head was kind of down in the frame, so you could see all of her gnarly teeth under her gums. Joaquin loved that, he kept pointing at it and then his teeth and biting the air with excitement. He got a sucker and some stickers for being super cute. He had charmed the office staff in the short time we were there. He was wearing an old pair of sunglasses, and then tucked them in his shirt. The girls in the office were calling him "the movie star." He said bye to each one of them and gave them each a high five and knuckles (or terrorist fist jab, as it has been called on Fox News), and we were out. Ta-Da! So in a few months Elodie will have another CT scan to make sure that the lump is shrinking and that is that. She had two sessions of PT these past few weeks and she has been doing great. Her legs are really engaging.

I am off to make lasagna for a debate watching party over at Ryan's. I can't wait, it is going to be an awesome freak show! Better then Project Runway! Vote for Obama people, he is our only hope!

Tumor Treatment...I forgot to mention.

Well, since the tumor is regressing our doctors think that there is no other need for surgery. It has receded from her spinal cord, but it has left a sort of dent in it. It looks like a spinal cord injury on her CT scan. So what they think is the best sort of treatment for her is to get more physical therapy in order to get strength so she can walk. How she improves will really be up to her.

She is works really hard during therapy and when we practice, I am not worried about her at all. She does have feeling in her legs and movement she just needs to expand on that. Our developmental neurologist says that kids that have issues when they are little with hypotonia and such, usually catch up by the time they are three. Woo-hoo! Just in time for preschool! Now we are going to work on getting her a some great therapy that we can afford. We are applying to Shriner's Hospital to see if they can help. They are free, I hope they take her.

She is totally back to normal. You would never guess she had surgery last week. She is outside right now playing with her grandparents and her brother. Just like a normal, healthy, happy baby girl face! We are so blessed. Can't say it enough, I love my kids!

A Great Event in Evolution

I have never had so many different emotions crammed into my heart all at once like I did at the hospital. It was such a growing experience that I am truly thankful for it. So to borrow a phrase from my Myspace friend Jennifer (Eolin), here is how it all went down....

Wednesday...
I went in to the babies' room to get them up and Joaquin had peed the bed. Nice. I grabbed Elodie put her by the toys and gave him a quick bath. I heard miss fussing but I just thought it was because she was hungry. Nope, she had a major poo diaper blow out and was mad, because she went in her diaper. (she usually goes on the potty like a big girl) She had to have a bath too. Ugh. I don't know how they know but they always do this sort of thing when I am in a hurry. Camden came home after I got her out of the tub and he saved me, he got Joaquin breakfast so we could head out the door.

Usual stuff happened when we were checking in to the surgery department of Primary Children's. Waiting in a bunch of different room, saying the same story to a bunch of different people. It seemed to take forever. Elodie got some versed again, which is a very funny drug. She was so happy and giggly, all of the other kids and their families became her very best friends. She is a happy drunk.

Finally, I handed her off to the anesthesiologist, he was sweet, but had coffee breath (pet peeve) and my girl waved bye-bye. I felt so tense inside. I knew what was going to happen and knew that the doctors were extremely good and capable of everything they had to do, but I was so scared.

The biopsy was only supposed to take 2 hours, so when two hours came and went I started to feel sick. They have signs in the waiting area that say, "If you haven't heard about your child after an hour from the time stated, please speak with the clerk." By the time some one came to speak with us it was 4 hours. I was on pins and needles. What happened was the surgeon Dr. Rollins, took four different samples from the tumor, because the immediate pathology kept coming back as scar tissue with calcifications. The fast pathology test take 25 minutes to process. I just wonder what was going on in there while they were waiting for it to come back. Do they go online, do they read, do they dance what is going on while my baby is just there on the table waiting? When Dr. Rollins finally came to talk to us in the conference room, I instantly felt relieved. I didn't know the immediate results, but some how I knew she was going to be just fine. I danced when he left and Camden seemed to breathe for the first time. After our conference I went to see her in recovery. She looked so tiny in that crib. Every recovery bed was full, that was scary. I sat there and stroked my babies hair and began to feel so grateful for everything I have. I wanted to hug the family next to us, I don't know what surgery their baby had, but it was sad, she was coughing up something gross, and was so pale. I closed my eyes hard and thanked Elodie for her strength. We went up to her room after a half hour of recovery. Elodie was still sleepy, but she would open her eyes and look around for me. It was sweet.

That night was rough. The nurses had to come into come in every hour for vitals, Elodie was on a morphine drip so they had to keep a close eye. I was on a fold out recliner chair thing, for what it was it was pretty comfortable. But I didn't sleep. I felt that Thursday morning that I had hit the wall. I was so tired emotionally, I was tapping all the strength I had to continue to be a happy face for Elodie. I kept texting Camden, (he was home with Joaquin) how I was so lonely and felt I was on the edge of breaking down completely. He was trying his best to be encouraging, but it was really hard for me to be away from home and to have our daughter in this medical limbo.

Thursday...
The morning was pretty good for Elodie. She was sitting up, chatting and playing. She was eating her breakfast just like she always does, but this morning she had a chest tube. We played most of the day and she napped. She was so sweet to all the staff. I went home later that day and showered. It felt so good. I broke down in the shower and just cried. Cried that kind of cry where you know that afterward you are going to be a different person. A person with experience and a new beginning. I welcome cries like that, they opens me up so far that it feels as if I am turned inside out. Nothing can harm you when your heart is all the way open and willing to learn. I am learning and Elodie is my teacher. Camden's parents came into town on Thursday. We were and are so grateful for that. The kids just love them and they are a huge help to us. We wish they lived closer and could see the kids all the time.

Friday...
All the doctors came in to visit Elodie and give us the good news. The tumor is benign and is regressing. It is a weird type of tumor, leave it to us to have another freak disorder, but it is leaving her. It has caused some damage to her spinal cord, but with physical therapy we have hope that that can be rehabilitated. How well she walks will be up to her, so if you have ever met my girl, you know that she will be just fine. It may take awhile for her to catch up physically, but that is okay, she can take all the time she needs. She is so strong, she didn't even flinch when her chest tube was taking out. Amazing.

Saturday...
We are home of course and happily hung out with our family. Saturday was so great. We went to Camden's aunt's house in Heber for a BBQ. It was so nice to just chat with them and play. Camden's dad and uncle gave Elodie a blessing which was so sweet. It meant a lot to Cam's dad. We aren't religious people of course, but it is important to teach my children tolerance and acceptance of all people. That begins at home and accepting one's family first. I would never refuse love and positive energy being concentrated onto my children.

Sunday....
I am so grateful for all of you out there that sent Elodie your love and positivity. I will put up all the photos I took, but right now my computer and camera aren't cooperating. Maybe it will later today. My hubby is leaving on a business trip in Vegas, so I can't tell you how pleased I am that Elodie got to come home before he left. Phew. I have been so happy and in love with the world ever since the doctors said the word, BENIGN! Benign was like my morning breaking, like the first morning fresh from the word! Everyday is a glorious day and I hope to keep this feeling on for a long time to come. Thank you for your support and your love, it really helped me through. Family and friends that is what it all comes down to, that is all we truly have in this life. I love you, know you are loved.

Night before Surgery...

So tomorrow my baby Elodie is going to Primary Children's to get her biopsy and bone marrow test. The technical term for the biopsy is, left thoracoscopic biopsy posterior mediastinal mass. Nice eh? Who knew they could fit such big words on my tiny baby girl.

Elodie is doing just fine as always. She is sitting in her high chair right now eating a hardy meal of beef broccoli and sweet and sour chicken. She isn't going to be able to eat for a while so I thought she should have something nice and flavorful. My kids are so funny, they hate kid food. Monro has just barely come around to peanut butter and jelly. The babies are allergic to peanuts, so none for them. Joaquin despises mac and cheese and grill cheese sandwiches. What kid doesn't like cheese? Elodie is my best eater, but she prefers savory foods with lots of flavor. Meal times can be stressful, 'cause sometimes I just want kid food-simple food! Anyway, I digress.

My girl will be in surgery for a little while and then we get to have a slumber party in the hospital. We should be home on Thursday. Whoo-hoo! I am sure she will bring home another little stuffed friend. Today she had her blood drawn and she got a black puppy named Muffin. She is so cute, she looks a little like our myspace friend Wilbur, but she is more of a dark chocolate. I will do a photo shoot soon of all her stuffy friends. She is spoiled at the hospital, I tell ya!

I am excited to get this part over with and get on to the treatment phase. We will know exactly what we are dealing with after the week. Phew. It will all be settled soon, I am sure. I can't tell you all enough how strong my girl is, I really can't. You just have to meet her. She has these eyes that are so compassionate and sweet. She hugs and kisses with great love and sings her heart out with enormous passion. She is my idol. I tell her this everyday and I hope she someday she really understands it. I love everything there is about Elodie, even her lump. HA!

I have been talking to her lump. I have been saying that I totally understand why it would want to snuggle into my baby, she is made of sugar, but it is time to hit the road. I put out a warning, so I hope it has listened and doesn't try to hang out or leave any buddies behind. Elodie is done with this lump.

I will blog about the whole thing when we get home. Wish us well and we will be, we always are because we are lucky enough to have each other.

Radioactive Baba GRRRL!!!

Lately this has been the "Elodie Chronicles," her present situation has taken over the blog in a big way. She tends to do that where ever she goes really. Today in the radiation department was a great example of that. She has been there five times in the last two weeks. FIVE! Everyone knows her. They brag about her sweet disposition whenever they hand her over to another nurse or technician. She is the good IV girl. She hardly makes a peep and is more offended then physically hurt when they come at her with needles. She is also cute when they sedate her. During these scans she has to be completely still, so sedation is always on the menu. Today she was singing, literally singing, "Lalala" when they gave her the sleepy drugs. She then saw me smiling down at her, she pointed at me and said, "Hey!" As if to say, "Why are there so many of you mommy?" So funny.

So today she had an MIGB. She was radioactive. Hope it gives her super powers, but meh, it probably won't. Yesterday we met with Dr. Michael Rollins. He is going to be doing the biopsy on Wednesday the third. He was so very nice. He actually apologized for having to cancel the first appointment we had with him last week. I don't think I have had a doctor apologize for anything. It was shocking and I thanked him. Joaquin was with us, and he was good. He didn't mind being shuffled from office to office. He was so concerned about his sister while she was getting her exam, he even shushed me! It was funny and he got a sucker for being an awesome big brother. We looked at the CT films and he was very interested. Afterward he was telling us about it in the elevator in his own language of course.

Elodie will have to stay in the hospital over night when she has the biopsy. They are going to do it with scopes so she will only have a few tiny incisions. She will also have a chest tube to drain out any fluid from the surgery. She will most likely have another surgery to remove the thingy when the test results come back from the biopsy. Once we know exactly what stage of tumor it is the doctors will know how to treat it effectively be that surgery, medication, or a combination of both.

Her blood tests all came back great. Her white blood cell where normal as were her electrolytes, which if they were elevated may suggest a more aggressive tumor, but they weren't so Yea! I had to get a urine sample from her and drop it off today. This was hilarious. They gave me these little bags with a sort of bandaid at the top to stick to her lady bits, then the bag had cotton balls in it to absorb the pee. I had to squeeze the pee out of the cotton and pour it into the specimen cup. Gagg. Baby pee is so stinky. You really know you love someone when you willing squeeze their pee from a stinky bag into a cup and then put that cup in your fridge. It is true love and it is real.

Elodie is doing fine through all of this. She has no idea what is going on, she just knows she is getting a lot of attention. I don't think she minds that. Joaquin is mostly stealing the family spotlight. We and the doctors are positive about her diagnosis. She is so strong and happy. There is no need for "poor baby" stuff directed toward her. "Poor mommy," sha! She is happy and usual and up for anything. She pleasantly goes about her day, every once in awhile offering herself up for experiments and test. She presents her arm reluctantly, but proudly for her IVs. She pees in bags with dignity. She is unapologetic in her loopiness and no matter how pissed she is during the tests she always greets her nurses with a "hello." She is a shining example of a good patient. We are very proud of her and love her for her resilience. She is a tough cookie, so watch out world, here comes Elodie!

Waiting is the Hardest Part...

Camden dropped Elodie and I out front of Primary Children's Hospital at about a quarter to 8 this morning. The weather was lovely and the babies were in good moods. Camden took Joaquin over the Kelli and Ryan's to be watched for the day. He got to play with their son Steele all day, so he was set.

Elodie and I went in filled out the paper work and waited. She had to drink contrast for the CT scan today. The nurse asked what flavor she would like, (lucky kids get to pick a flavor, the stuff they give adults is plain and chalky and awful.) I said, "Anything but orange would be fine." A few minutes later, she came in with a sippy that was full of orange flavored contrast. She didn't know, but that was the only flavor they had. Great. She had to drink about 9-oz. in an hour. Yuck. We went outside to help it go down easier. I basically had to force feed it to her, but she didn't cry much. She just gurgled it in protest, but still swallowed. Then after she drank that, more waiting. It has to work its way through her system to help the view of the CT.

Camden came up by this time. He said once he drop Joaquin off, he was in instant play mode. Phew. Elodie got another IV after a lot of waiting....yawn.

We then went into the big CT scan room. If you have never seen this machine it is huge. It is a movable bed that slides back and forth through a giant circle that looks like a front loading washing machine. It is weird to put a tiny little person on that monster thing. I held Elodie in my lap as our nurse gave her versaid, a medication to chill her out while she was getting her scan. It was so funny she was doing her usual chatting and then, bam SILLINESS! She just started to giggle. She was looking into my eyes just laughing, then Camden started to pet her hair and she loved it almost purring with laughter. I laid her down on the machine and she cooed and giggled the whole time. Hilarious.

Then we were to go upstairs to the Hematology/Oncology department to get her results. We checked in and waited some more, bickered a lot. Camden isn't very good hospital company, he just sits there looking tired and I want to talk to distract my thoughts. He never wants to talk, really. He never has anything to say. It was irritating for both of us.

The resident told us that the doctor was in a meeting so we should get some food and then come back. Elodie finally got to eat! I automatically go into a hospital cafeteria and get a grilled cheese samich! The craving is from all those days spent on my feet on the floor taking care of patients, ah takes me back. Elodie was in a better mood instantly and so was I. I was so hungry.

Finally the doctor came in and told us what he thinks Elodie has. He thinks she has a neuroblastoma. Now what kind exactly will be determined by a biopsy and bone marrow screen that she is getting tomorrow and another scan she will get probably next week. But the doctor thinks that she doesn't have the aggressive kind, with cells that are rapidly growing and infiltrating other tissues. He believes she has a lower stage kind. I think so too. She hasn't shown any other signs except her lack of strength in her legs. She is so healthy and her prognosis is pretty good. Yeah!

It was an easier day today for Elodie. She got stoned and got cuddled by her mom and dad all day. We had it rough waiting and waiting in those little rooms. That part was exhausting. She is going to be sore after tomorrow, but she will be okay. We have a good team behind us that will make sure she gets everything she needs. She is one tough cookie and so I am, so we aren't scared. We head into storms with our heads on straight and our hoodies on. We should get the results of the biopsy on Friday. Got fingers, cross 'em people!

Baby's First MRI...

I came home from the Cavedoll show on Friday night (Saturday morning really) and got my Elodie up for a snack. She couldn't eat anything past 3AM until after the MRI was done. She was NPO because they have to sedate babies. It was scheduled for 11AM, which is such a long time for a little one not to eat. I had to feed her something right before the cut off time. She was very confused, but in a silly mood. I knew she would either be really pissed at me, or really funny. I am glad she was funny. She had some peach yogurt, milk and crackers and cheese. She thought I looked pretty crazy in all my hair and make up from the show. Elodie went back to sleep with out a fuss as usual she is a pretty good little sleeper.

We all woke at the usual time. I tried to feed Joaquin at the dinner table so Elodie couldn't see him eating his breakfast and her wonder, "Hey Ma, where the hell is my waffle?" But he wanted to sit at his little table for breakfast so he could watch his cartoons. Elodie played happily on the floor, she was oblivious until Camden came home with bagels for us. I had to put her in her room, that was sad. It is so hard to deny your kid food. So hard. She got her binky which she only normally uses at night and she was pretty okay.

Now on to the waiting. We sat in the little room, as ya do and waited. Filled out forms and waited. Changed the baby and waited. There was a girl about Monro's age coming out of the sedation and she just lost her mind. She was screaming like they were cutting off a limb. That started to get to Elodie. We shut the door and hid in the little room. Elodie was so funny while we were just hanging out. I think she was delirious from hunger. She was laughing at everything I was doing and every toy was hilarious. She was a nut. A nurse came in to tell us that another patient that was already in the hospital had to have an MRI and that is why it was taking so long. This nurse had gum and Elodie noticed. After that she kept signing "eat" over and over. Sad.

Finally the nurses came in to give Elodie her IV. She was so good and hardly made a peep that she got to choose a toy out of the treasure box. She picked a soft brown teddy, I named her Meri, because it sounds like MRI. Heehee. Not too long after that it was her turn. She rested in my arms when they gave her the medicine to knock her out. It was funny how much she tried to fight it. She was laying across my arm and then when she could feel the tiredness coming on, she was trying so hard to get up. She was pointing off into the distance, said "Ma." and then she was asleep.

The test took about an hour to finish and then she would be coming out of the anesthesia for another hour, so I went out and got some gas and a snack. I went to that Tesoro by Presidents' Circle and as I was going into the store I heard our song, "Full of Awe" coming out of a car that had just finished fueling. It was so weird. I texted Camden immediately. (He was home with Joaquin and Monro) Wow, people actually listen to the CDs they buy. Huh.

So back I went to the hospital to wait. I sat in my car to eat my snack and drink my tea. I felt so alone. So all alone. I felt that no one could possible understand what I was going through at that exact moment, except my Camden. I called him and lost my composure. I had been so good up till then. I know what this part of an illness or a disorder or a whatever is like, this crazy "let's figure this out" phase and it sucks. I went through it for almost two years when we were trying to figure out what was happening to my brain. It is different when it is your baby though. They looks so tiny, so small on those big doctor machines. I fidgeted with Elodie's binky while I talked to Camden and had him set me right. He did, he almost always does. I popped the lid of my tea and it gave me a wonderful much needed quote about courage and I was able to suck it up and go in there and get my baby.

The nurse gave me my sleepy girl and it reminded me so much of the first time we met. She was hooked up to an IV, groggy and cute just like she was when I saw her the night she was born. She was trying so hard to talk and tell me all of her crazy drug dreams, but she couldn't. She could just make weird sounds, laugh a little and stretch and shrink her mouth. It was funny. After a half an hour and some apple juice she was good to come back home. She had another nap and then was pretty much back to normal. We went to Ryan's (our drummer) for a BBQ and she was just fine until bedtime came, which is usual. A girl needs her beauty sleep NOW DAMN IT!

I got a call today from the doctor. The findings were not as great as we had hoped, but not completely horrible either. Her brain is perfect, it is developing very well. So we can rule out any cognitive disorders, (I already knew that her brain was fine she is so stinking smart and adaptable). But next to her spine in her thoracic region is a soft tissue mass. It is connected to other tissues around the spine including her muscles and lung. We don't know what it is really, but it has gotten in the way of her spine developing properly and she has some atrophy in her spinal column. That is why her legs are not working and developing like they should. Atrophy if you don't know is the partial or complete wasting away of a part of the body. Which means that her leg and lower spinal weakness could be reversible with lots of therapy or maybe not. We don't know anything along those lines yet.

So what is next? Well, very soon she is going to have a CT scan to get a better idea of what this thing is and what we can do about it. This is all going to move very fast. She may have surgery, she may have more tests, but soon we will know what we are up against and what we can do to help Elodie. I am trying hard to stay positive and keep my nurse's cap on tight. If I think like I nurse more than a mom, I will do better with all that she will have to go through in the next little while. I will be there in the rocking chair waiting for her to be placed in my arms just like the first time we met. I will rock steady in that chair, I will be strong, because I have my Camden to set me right. He almost always does. ; ) Wish my baby luck.

The Elodie Sessions 2

Elodie had another physical therapy session yesterday.  She did so well.  It is really amazing how quickly she is learning.  Elodie even learned a new skill.  She now can change position from laying flat on her back, to sitting on her bum.  Woo-hoo, this is huge!  She bounced on the yoga ball, reached way up high for toys, and did some tall kneeling.  All of these "play" exercises will help her strengthen her back and abdomen and will help her eventually engage her legs.  

Emily suggested we get some orthopedic shorts called "hipsters," they have a webbing in between the legs.  These things are designed to keep baby's legs from doing the "W" sit.  Which is when the kid sits with their legs bent underneath them, but instead of the feet being tucked in under their bum, the feet point outward toward the side.  This kind of sitting is not good for Elodie's hips and could cause her to have a wide staggered walk, when she does eventually start walking.  So immediately when we were finished with the session I went online to look for the shorts.

I couldn't find them anywhere on the web, but I did find something I think will work way better.  They are called Happy Straps.  They are like the shorts in that they will help keep Elodie's legs from splaying out to the side, but they are like a belt and can go over or under her clothes.  I think these will be much easier to deal with then the shorts.  The shorts I guess are made of neoprene and we do early potty training with Elodie, so there would be no easy on and off.  Anyone that has put tights on a baby knows what a fight that is.  I can't even imagine dealing with that everyday!  No thanks!  The Happy Straps just unsnap and drop.  Bam, baby on potty!

The woman that invented the Happy Straps invented them for her son who has hypotonia, after not being able to find something that worked to tuck his legs into the right position.  She got the short thingies and they proved to be an easy match for her son.  While wearing them he still could do the "W" sit.  He started wearing her invention and now he runs, jumps, and tumbles just like any other little boy.  Her name is Janet and she herself emailed me when I had some questions.  How great is that?  She had a genuine interest in Elodie and her condition.  Happy Straps has great costumer service, she even dropped me a line when the straps shipped out today!  I can't wait to get them and try them out on Elodie.  She will probably hate them at first, because they won't let her move in the incorrect way she is used to.  She will adapt, she is a fighter!

Elodie's therapist Emily is going to be moving on to a new job with the Primary Children's group, so we are going to get a new person soon.  I hope that Elodie takes to her new therapist as well as she did Emily.  But my girl likes to meet new people and isn't that shy.  Elodie is moving like crazy all over the floor and has such a need to get up and explore.  It is great to see. Keep sending her good vibes, she will keep improving, and I will keep updating.  I am so stinking proud of her!