Friday, February 20, 2009

our closet walker...

The friday i left to go to utah, we had a neurology appointment for leah. we scheduled the appointment more than three months ago. it was the last specialist ANYone could point us to to try and figure out why this little girl isn't walking.

{daddy and leah in the waiting room}

i didn't have high hopes for the appointment. i expected to hear the doctor say something to the effect of, "Well, something is wrong. She should DEFINITELY be walking right now. But, I have no idea what it could be!" And my expectations were thoroughly met. The neurologist did watch her for nearly an hour and assured us she is a fully functioning toddler...other than walking. Everything looks good. She has very low muscle tone (which means she is still very bendy) and that could be a reason she is having trouble. It doesn't mean she doesn't have the muscle to walk (she does), it just means she has a tendency to wobble a little more because she is so flexible. Although it looks as if everything's okay, my mom said it best: It's frustrating good news.

The dr. mentioned we should get some blood drawn and get a urine sample to test for some genetic problems or for enzymes that might give us more hints. So this week, since I've had a bit of time, we did just that. Well, the blood part at least (I'm still waiting for some help on how exactly to get her urine into the bag they gave me when she's still in diapers...anyone? anyone?). Leah waited patiently in the waiting room for nearly 45 minutes. Then they took us back and the phlebotomists were really nice. We waited for another 10 minutes ("I'm sorry, ma'am, this is an unusual test, so we have to put it all together right here and get clearance from our manager. She also doesn't weigh very much, so we're trying to figure out how to do all the tests by drawing the least amount of blood possible.") I held her body, one phlebotomist held the arm they were poking and other did the poking. {can you see the blood in the tube?}

Leah did relatively well, considering the circumstances. When we finished, they gave her some toys and asked me to wait just to make sure they got what they needed. About 15 minutes later, she came back and said, "You're really going to hate me. We need 1mL more. Yup. ONE milliliter. Oh well, I knew she tried to draw the least amount possible for leah's sake. So, we held her down once again and poked the other arm. Only this time Leah knew what was coming and wasn't as cooperative. The phlebotomist had to poke and then wiggle a few times to finally hit the vein.
{this picture makes ME want to cry}

Wow. What an experience.
{showing off her pink and purple heart bandage...she had one on both arms}

And to top it off, the following:

While in Utah, my step-sister told me of her friend's little girl who wouldn't walk. Her friend was sure her daughter knew HOW, just wouldn't. So, they put a pen in her hand and the other half of the pen in the mom's hand. That way, the daughter still thought she was holding onto something, but the mom could easily let go. It worked. The daughter walked independently (well, with a pen in her hand) soon after.

So, I tried it with Leah. I've been using a pen all week, just to get her used to it. On Tuesday, I let go of the pen. She took FIVE steps. Yes, FIVE steps. Then, she looked up, realized I wasn't on the other end of the pen and she fell to the ground. I didn't know whether to scream out of joy or pure frustration. I did a little of both. But she won't do it again! She's like a 5 year old needing someone to hold onto the back of her bike even though she can ride on her own.

Any other suggestions?! I'm begging you...

10 comments:

AJ said...

I totally sympathize with the blood drawing. Stella had to have some tests run when she wasn't even two yet and it is soooo hard to see them cry like that.

B, C, and D said...

First off, poor Leah for having to get poked so much!! That picture just breaks my heart. Second, YAY Leah for walking on your own!! AWESOME!!!

LTC said...

Does the bag have sticky stuff on it? Shoot me an e-mail and I can (hopefully) walk you through the pee trial!

Alysha said...

Hooray! As thoroughly horrible as your experience has been with all of the doctors and blood tests etc, I am so excited to hear that she is making awesome progress. Five steps is major, and though she hasn't repeated this new found skill yet, I am sure it will be done again soon...give her another weeks or so. Again, so sorry to hear about the blood test, but I think you are doing the right thing! :)

Jenny said...

We've had a lot of blood work and urine tests...and it all is just so sad. It never gets easier. As for the urine bag -- it should have some adhesive so you can stick it on her and she pees in the bag. She just wears it under her diaper and you check it periodically. The trick is getting the bag off. You have to do it slowly and it's not all that comfortable. Walking? We are trying to get Sammy to walk holding my hand. We have the reverse problem I suppose. She doesn't want to hold on to anything, but because she's so stumbling and all over the place, it's dangerous to not have her hold your hand when we're out. So...this is what was recommended to me by our PT, it's a different problem than yours, but it can still work -- a dish towel. It's the same trick as wth the pen (except if she falls a towel can't poke her eye or something). It's the same concept. With the towel, each day you just hold it further and further away. The towel will get to the point where it sags, so perhaps that's good with Leah...it won't be so dramatic when you eventually let go. I'll ask our PT if she has any suggestions for you when we see her this week.

rachel said...

Wow, that picture of her crying is hard to look at. I usually tried to leave the room when Simon had blood drawn because it happened so many times. She is such a cute little girl and I hope that she can keep working on the walking - five steps - that is awesome! One of my friends emailed me while we were in the hospital and told me their family motto was "We can do hard things." I was really glad she shared that with me.

Rebecca Parker said...

although i don't always comment, i reg check leah's developmental updates & am so excited for you to see progress lately!! good quote from our olympic-themed ywinexcellence last fall from yw advisor who just barely rec'd medallion for first time=slow & steady wins the race!:) keep the faith & know you're loved by cousins!!

Rob and Marseille said...

I have a friend who has a daughter who is almost two, not walking, and has low muscle tone too (though hers is more extreme..she has trouble eating). You are not alone!

Julie and Lenny said...

i don't know if in your other posts you had said that you had tried speech, occupational, or physical therapy? These worked for my nephew who had similar issues. a therapist would come to his house and work with him 1-2x a week. I wish I had more suggestions! We all love little Leah!

Nancy Brown said...

I found your blog through kim and ryan wintertons. our son has Cerbral palsy and didnt walk till he was 2. now we walk like a crazy drunk solider. but have you looked into getting some afo's or braces on her legs to help with stability. have you tried the early intervetnion program in utah. they come to your house and it is free.

if you need numbers or anything i would be happy to help. and if you need to vent with your frusration of them not walking come on over to my blog..