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.
Monday, February 23, 2009
Thursday, February 12, 2009
"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.