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.

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!

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!!!

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!