The Wheelchair

Last week we went to Shriner's to have Elodie's wheelchair evaluation. It was sweet. The tech put Elodie up in this giant measuring chair. She was measured head to toe. It was like she was getting fitted for a fancy suit. They stretched out her legs and arms and measured how wide she is. So funny. She was pretty stressed about it, being in that big ol weird chair. She was saying, "Mommy, mom, help," the whole time and doing the "gimme, gimme hand." Those are so hard to resist, but she had to stay put. The wheelchair is going to be tiny, twenty-two inch wheels. It will be small enough that she can learn to get in and out of it. It is teal, we are into teal lately and the kind of frame she needs didn't come in pink. I am glad about that. She has far too much pink.

I am happy about her getting a wheelchair and more independence, but there is a part of me that still can't believe it. My little girl is going to be in a wheelchair for God knows how long. She can move her legs more, and she is getting better at standing on her own, but the nerve impulses to walk aren't there yet, and might never be. It does make my heart ache. No one ever expects a tumor to grow in their baby and cause that baby's legs not to move. At times I blame myself for this happening. I think about my pregnancy and how stressed it was. My grandparents died, my mother went insane, I was still in an ugly custody battle with my ex, I had a small baby Joaquin to care for and I had panic attacks from all the stress. I felt so alone and just tried so hard to keep it together. Camden tried his best to deal with me, but he worked all the time. I remember reading that in Japanese culture the mother has to be protected from all negativity while she is pregnant, or health problems will come to the baby. That small story has echoed in my head. I know, I know, it isn't my fault, but it is so hard as a mother to not want to take on all the responsibility. All I want in life is to care for my children and do the best by them that I can, I feel like I failed Elodie when I was pregnant. I feel I should take some blame because I didn't take care of myself while I was pregnant with her. I took on too much. I still feel like I take on too much, but that is sort of a necessity. There is no one else that can do what I do, so I do it....and I do really love it. A mommy life is hard but ridiculously rewarding. No amount of money comes close to the feeling I get when my kids want one more hug and say I love you with their smiley little faces.

Everyday is interesting and full of dainty evolution. Elodie and I are coming closer and closer to being stronger. She has a lot of special talents. She is pulling up on her knees, big and tall. She speaks so well. She dances (on her bum and knees) and sings, I will teach her to harmonize. She loves everything so much. She hugs hard and kisses hard and bites HARD. Elodie has old eyes and can see right through to the very heart of people. She is going to be such a powerful force in mine and other peoples' lives....and now she is going to do it on wheels!

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!

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.

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!!!