Archives for category: event

Today we went for Lizzie’s first professional haircut.  For Lizzie, haircuts have always been a matter of necessity, starting with her very first haircut when she was 5 days old.  Our neurosurgeon handed me a small Ziploc baggie full of fine, wispy curls and simply stated “Baby’s first haircut.”  I still have that baggie in her baby box.  Since then, I have always trimmed Lizzie’s hair whenever it would get too bushy and she would fall asleep in her wheelchair.  Of course, with the weaning of the phenobarbital, she doesn’t sleep anywhere near as deep as she used to.  I once was able to cut Lizzie’s hair, trim her fingernails, her toe nails and change out her g-tube button all in one session without her even moving.  Now you can’t even snip one curl without her hand shooting up to her head which then starts moving.  And she barely ever falls asleep in her chair.  It became apparent that we would need a stylist who could work with Lizzie.  On a lark, I put “haircuts” and “disabilities” into Google.  An article about a place called “Pigtails and Crewcuts” popped up.  They stated in the article that they were happy to see and work with special needs kids, but the location in the article was kind of a drive for us.  Then I found out they had another location even closer to us.  I immediately emailed them to ask if there location also worked with special needs kids.  The manager called me to set an appointment.  That brings us to today.  Miss Wendy was awesome!  We will definitely be giving “Pigtails and Crewcuts” all of Lizzie’s hair business in the future.  Looking forward to our next trip.  The rest is better told in pictures.  Enjoy!

🙂

And so it begins.

Enjoying being pampered.

Break time!

Miss Wendy was awesome at working with moving heads and busy hands.

There were many toys for busy hands.

“W” is for Miss Wendy who cuts my hair.

Lizzie was a little more interested in tasting the princess’s dresses than putting them on the princess.

A little off the top.

Miss Wendy even managed to trim around those sensitive ears!

Loving it!

Loving the blow dryer.

And its cord!

Lots of giggles!

Loving that cord a little too much. Miss Wendy was fast with the power off switch.

Lots of brushes to check out.

Nicely feathered.

All done.

A clean up towel is Lizzie’s idea of high fashion! Silly girl.

Mommy cleaning up all the loose, dry hair pieces.

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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.

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.

In the history of Lizzie’s life, she’s never been one for physical interaction.  If it’s textural or gooey, she’s all over it, but if it involves being held, or touched for longer than 10 seconds, she wants no part of it.  I always attributed it to all the time in the hospital, and all the poking and prodding of tests.  I also attribute part of it to the nurse in the NICU who told me that holding my daughter was not something I should be doing, because her neck was not strong enough for her head.  And I shouldn’t touch her head.  I had been lightly stroking her forehead with one finger.  I realize now she was looking out for herself.  Hard to settle down an excitable baby when Mom leaves for the day.  UGH!  I never should have listened.  I remember being afraid to hold my own daughter.  I also remember that she liked being turned upside down as a toddler, but someone told me we shouldn’t do that either because it would hurt her.  If she liked it, how was it hurting her?  It wasn’t like we were hanging her upside down by her feet, we were just dipping her upside down and back.  She would giggle, she loved it.

Hugs for Lizzie are usually either given leaning over her crib rail while she is sitting, or hugging her in her wheelchair.  It’s always us hugging her. If you stay too long, she pushes you away.  If you hold her on your lap, she is constant movement, and the whole experience is maybe a half hour before she’s done with you.

Today, however, something amazing happened.  I was changing Lizzie’s diaper at bed time, and I had her bed railing half down.  I was standing leaning over the bed talking to her, when she got up on her knees, and scooted over to the railing.  Then she put her arms on mine, and started to pull herself up to stand.  I was shocked.  She’d never done this before while holding on to me.   When she got herself up, she leaned into me, and then just stood there.  After a few seconds, I realized what was happening.  Lizzie was giving me a hug!  I scooted closer to her, and hugged her back gently, and said, “Thank you for such a wonderful hug, Lizzie!”  And then she was done.  She lowered her butt back to the mattress, holding on to me the whole time.  I realized I had tears in my eyes.  What a beautiful gesture from my daughter.  I don’t need anything else for Valentine’s day this year, nothing could top that.

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Someone looked at me like I was crazy when I put on her AFO’s (leg braces), then her pajamas, and then told her the bus was coming.

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. 🙂

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Lizzie has a great seat for her brother’s Cubmobile race.

Last weekend we went to a really cool event called the Abilities Expo.  This event brings together equipment vendors, groups, and resources for disabled individuals to one venue where the people who need them can then view, try-out, and access these resources.  What an awesome idea!

We saw several different vehicles modified for wheelchair transport, a valuable thing for a family hoping to get a new vehicle in the next year, and not wanting to trek out to various vendors separately to see what’s available.  The one we liked the best was a Dodge mini-van with a fold out ramp in the rear.  It allows for 7 passengers including the wheelchair passenger.  This will make us much more valuable in the Cub Scout car pool.  Also, it allowed for Lizzie to be in the middle right behind the front seats, where either driver or passenger in front could access her easy.  Awesome, since I spend equal time in both seats.  We are excited about this being a mini-van, because the fuel economy on our E350 frankly is not very economical at all, and I would love to be able to park a much smaller vehicle on a regular basis.  The only thing I’m not sure about is getting a rear entry vehicle, as we’re used to side entry, but I guess we’ll get used to this as well.  I just wonder how parallel parking will work when someone parks on our tail.  Hmmmm.

Look at me!

I also learned of things that we did not know existed.  Lizzie tried out a special needs bicycle at the Creative Mobility booth, which her brother enjoyed pushing her around in very much.  It could work on Lizzie power or another person’s, allowing us to decide who had control.  I also loved seeing that there was a bicycle with a wheelchair-like seat on the front of it so I could ride and have her right there with me.  Something that would be good for both of us.  Unfortunately, as with most special needs equipment, both of these items were highly expensive, and will require either insurance approval or fund-raising on my behalf.

There were many different equipment displays.  We checked out rail lifts by several companies that would allow us to move Lizzie from one room to another.  We will probably need one of these in the next couple years as Lizzie gets older, bigger, and heavier.  We did find out that most insurances do not cover these, and I will be busy in the near future trying to figure out if ours will, or where we can go to get help with this.  Again I may need to look into how to fund raise on our own.

We also saw many booths of wheelchairs, including ones for sports, ones that lifted the user to a standing position, and just about every other need.  We saw wheelchair accessories.  There were spill proof trays, and bags and wallets made to fit walkers and crutches.  They also had tools for reaching, and grabbing items, opening jars and magnifying text.

There were walk-in bathtubs, adaptive showers, and assorted bath seats.  We especially liked the Aquatech Bathlift, that lowered the user into the water almost all the way, but raised up to the level of the tub to allow for easy removal from the tub.  This seemed more beneficial to Lizzie that she would be in the water instead of hovering just above it like in her bath chair now.

We also saw a cool line of greeting cards called CRIPmark.  They were all disability themed and featured people in wheelchairs, with crutches, with leg braces, etc.  I thought it was a wonderful idea.  They all had wonderful artwork, and a sense of humor, something we all need from time to time.  One of my favorites, was a simple card with LOVE spelled out in sign language, and a blank card inside.

In the final row, we came across an awesome booth of clothing called 3ELOVE.  Their name is explained by their mission statement, “Embrace Diversity.  Educate Your Community.  Empower Each Other.  Love Life. ” Their logo is a really simple wheelchair design, only instead of a familiar round wheel, there is a heart.  My favorite shirt, which I’m going to buy for Lizzie, says, “I love life”, substituting their logo for the word love.  I love it!  It is so true of my daughter.  No matter how much happens to her, Lizzie always rises above, and comes out smiling.

There were legal and service booths, offering advice and information.  And along with the useful information, there was also some entertainment by way of a demonstration of wheelchair rugby, and an all abilities climbing wall.  I am ashamed to say I could not even get half way up the “easy side”.  Proudly, my 10-year-old scaled the “difficult side” all the way to ring the bell, despite a missing hold.

I saw so many things I would have loved to buy at the Expo.  Many of which will have to wait until insurance is approved, or money is raised, but it’s nice to know they are available.  I am so glad we checked out this event, and definitely recommend it to anyone with special needs, or who loves someone with special needs.  It’s an event that will definitely grace our calendar next year, hopefully finding us in a better situation to get some of those items.