Archives for category: cerebral palsy

Today, as I was getting Lizzie dressed, I was running a commentary as always.  I was telling her what a wonderful day it was and that since the weather was so nice that I definitely had to get her outside.  Yesterday we used her gait trainer outside, and she did really well with it.  Today I wasn’t sure if we should use her gait trainer again, or use her bicycle.  I mentioned this to her and I was finishing getting her dressed, and she started making “Buh,” sounds.  Now since the beginning of time for us, we’ve called Lizzie’s feedings babas since they started as bottles.  I looked at her smiling and saying “Buh, buh,” and I thought that’s what she was doing.  Never mind that b’s aren’t a common sound for her. I asked her, “Are you hungry, do you want a baba?” and then I saw her smile fall and I said, “That doesn’t make sense, you just had one.”  Then something occurred to me and I asked, “Bike?” she looked at me, and I asked, “You want to go on your bike?”  Her face lit up.  Now I don’t know if this was a fluke, or she was trying to say bike.  I’m praying it’s the latter. Image

So, a little while later after I pulled out the bike and cleaned the dust off of it from storage, I put her on it, and we did our usual walk around the circular street where we live.  Miss Lizzie was really pulling on the handlebars today, which was causing me to have to hold tight to the push handle and battle to keep her from veering too far.  I had just decided to walk around the front to flip the handles out of her range of grasp, when she started moving!  Lizzie was pedaling all by herself!  With the exception of a couple of times that I had to give her a nudge to restart her, she must have gone about 30 to 40 feet on her own.  I am completely amazed.  My eyes were tearing up.  I was so proud of her.  This is the first time she has ever done it alone.


Today is Lizzie’s birthday and she is now eight-years-old.  I made a list of Lizzie’s progress.

Miss Lizzie – Age 8

In addition to everything on her “can” list last year,

Lizzie can:

Cruise her railing on her bed.

Turn her feet the right way while standing in her crib.

Open and empty a drawer (much to Mommy’s chagrin).

Operate a light switch when prompted.

Move her chair along if she has a wall or dresser to push/pull off of.

Stand and empty toys and books from bins.

Lizzie can not:

Walk independently

Talk (except for the occasional Mamama and All Done)

Use the bathroom

This year Lizzie started:

I’m walking here!

Walking with a gait trainer at home.

Riding a tricycle at home, that we push for her.

Sitting up better, for longer, and sometimes sits to play rather than laying all the time.

Getting better at handling foods and liquids by mouth (More swallowing, less coming back out, still not more than a couple of times before boring/tiring).

This year Lizzie had trouble with:

A repetitive bubble on her g-tube

This year Lizzie received:

NO new diagnoses and no seizures for 7 months today.  YAY!

1 new seizure medicine :  Topamax, which brought the total to four with Phenobarbital, Keppra and Trileptal.  Then we said goodbye to Trileptal (three) and now are weaning Phenobarbital.  Hopefully she’ll only be on two next year.

Check out my cool new ride!

A gait trainer and a tricycle.


A while back I found two of these tubes (yellow and orange) thrown willy-nilly in the bottom toy bin at the dollar store.  Knowing our Miss Lizzie’s affinity with tubes of all shapes and sizes and anything textured, I bought them both.  She loved them immensely.  They stretched out really far and made a wonderful noise when she used them like an accordion, in and out along her mid-line.  Awesome!  Unfortunately, Lizzie loved them so much that they got very bent out of shape and didn’t quite work anymore.  She still loves them, but I was aching to get her some new ones.  Since then I have scoured every dollar store I could think of looking for these things to no avail.

Today, I was on a quest to pick up some ice cream, and on the request for a certain ice cream topping not carried at our Walgreen’s (where I was picking up Miss Lizzie’s meds), I ventured across the street to Jewel.  My son had to be with me on my ice cream run, and of course this meant a visit to the TY Beanie Babies in the toy aisle.  As I was trying to rush my son from the store (I already had the ice cream in my cart), I came across Jewel’s dollar toys.  I was looking at the shelves, thinking about two “Birthday Bags of Fun” I have to make in July, and a random thought popped into my head.  What if they had those tubes.  And lo and behold on a lower shelf there was a half-full box, and another half-full behind it.  I actually got teary when I saw them.  I bought two in each color, and will probably go back for more!  I also made note of the name and manufacturer of our wonderful tubes, because the dollar store hadn’t had a box and by the time I had realized Lizzie loved them she’d gummed up the bar codes past reading or smart phone scanning.

Michael was disappointed that Lizzie got toys and he didn’t, but I had to remind him of all the times he got candy or snacks or other toys in the store, and Lizzie didn’t, because let’s face it, there are not a lot of grab and go toys for kids like Lizzie.  And there are no edible treats in the store for kids with g-tubes.

Lizzie loved her tubes, by the way.  I told her I got her something at the store and pulled out a blue one (her favorite color) and I stretched it out so she could hear and see the brightness of it, then scrunched it, and hid it in my hands.  She stared at my hands intently, and reached out slowly with both hands.  I laid it across her hands, and she grabbed it, stretched it out and rolled it around in the air.  She bent it in two, and kissed it!  That was one happy girl, well worth a few almost tears in the Jewel toy aisle.

I love the warmer weather.

I love my daughter.

Lizzie enjoyed chasing her dolly outside today.

But today I love my daughter enjoying the warmer weather.

Lots of giggles were had during the pursuit.

Dolly gets smooched when Lizzie catches her.

Today we went for a follow up to the orthopedic surgeon.  He looked Lizzie over.  Checked out how her braces are fitting.  He also had us take an x-ray of her pelvis to check out the hips he did surgery on back in June.  I was happy to receive a phone call this afternoon stating that her hips look great and we don’t need to see him again until next June.  Unless of course something else happens, or her braces need adjusting.  It’s a relief to have this taken care of.  One more appointment out of the way for a while.

When we were waiting for our van at the hospital’s valet, we noticed a familiar man in a bright red suit unloading a minivan full of toys onto carts to take to the children in the hospital.  Michael said, “Look, Mom, it’s Santa!”  After our van had pulled up, and we were getting ready to load Lizzie, the man in question materialized next to us, and told Michael he needed to be good.  Then he looked at Lizzie, stroked her cheek, and said, “I know you’re always good.”  To which Lizzie licked his glove.  I was silently praying she wasn’t going to bite Santa right then and there.  Santa produced two beanie babies, a black bear for Michael, and an otter for Lizzie (which she amazingly held onto until we were in the van which is unheard of).  Then with a twinkle in his eye, and a wink to Mom, he went back to his skids full of toys.  It was a nice surprise.  Michael actually voluntarily helped me load his sister after Santa’s visit.  Ha ha ha!  Or should I say, “Ho ho ho!”?

I hung up the phone yesterday and I woohoo-ed, surprising my son who was at the back of the van. Lizzie’s gait trainer has been approved, which means that in about a week and a half, she will be walking in our house for the first time. This is such exciting news. Of course, as I was woohoo-ing, I swear I heard my son mutter, “Godzilla,” under his breath. This is no doubt in reference to the destruction of Lego villages he sees in the near future as his sister becomes more mobile. I had to laugh. 🙂