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.

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!!!

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.