Monday, October 25, 2010

Vivian's 2nd Birthday Party

I know this blog is about Elena, but I do have another child. My little miracle Vivian, who almost was born at 28 weeks--but made it to 38, after two hospitals and several doctors threw everything they could at me. She made it. What a shock--In many ways...I'd been on the verge of giving birth for so long, that when I did go into labor, from first contraction to birth was 20 minutes...I never made it out of the house. October 30th, Viv was born in the foyer, and our Fantastic Nanny Annette just about caught her--EMS arrived right before she was actually born. It was crazy, I tell you.

Happy Birthday, my little ball of entropy. We love you to pieces.

We threw her party a week early, to try to separate it from Halloween. I made a huge castle for the kids to play in--Vivian LOVED IT. Here are Vivian's Cardboard Castle highlights--all the party kids got homemade prince/princess/etc. capes (THANKS GRANDMA & CO)!

The Castle

Birthday Princess

I start leading the Cardboard Knights

Cardboard Knights

Making a pretend Feast

Minicupcake #1

Minicupcake #2, on the run

Tired Princess

Jimmy Time: Recaps

We've been seeing Jimmy every weekend for the past four weeks.

First, Jimmy came to our house to meet E and they played soccer outside (with crutches). (No pics).

Next, we went to our favorite park and tried a new bike trail. The Fitness Trail at Pen Park advertised that it was paved and wheelchair-friendly. I assumed that meant it would also be a great tricycle trail. WRONG. That trail was ALL HILLS. Big hills, too...I have no idea how they mean "wheelchair friendly". Unless you're using a strong power chair or are training for a major wheelchair race, that trail was ridiculously difficult terrain. Paved does NOT necessarily mean handicap accessible. BUT, Jimmy was a champ, and helped E through it and tried to get her to work as best she could. (No pics--I was way behind with Vivian).

Next, we went to the trail featured in the 0.8 mile post. I wasn't sure how to recap this--my dad took the pictures and I forgot to get them off his camera. I just received them, so here they are!

I let E bring her new magnifying glass for the nature walk. Big Win.

After a day of 1) morning hippotherapy, 2) shopping errands, 3) short bike ride with Jimmy, 4) we went on a nature walk. The little trail is (I'm guessing here) 150-200 feet long, and winds a little. The following video is E's last pass--she already had gone down and back the trail twice, walking and falling and getting up along the way. The Doodle is tired--but still--LOOKING GREAT!

Seriously, I was floored by how well she was moving. Shortly after this, she was DONE. She got carried/pushed in the bike the rest of the way (which was not that long)--and then she asked if she could walk to the playground and play some more.

The following week, Jimmy came to our house and they all played Hide-and-Seek in the side yard (Jimmy often brings his two sons, Tyler and Ryan. They are fantastic with Elena). It's hard to see, but E got up in the mulch bed/grass by herself, and walked to the Cardboard Castle. Not too shabby! Elena also can walk from indoors to the Castle, including the steps, by herself (as long as she holds the side).

Wednesday, October 20, 2010

2nd Annual Card Exchange, Take 2

Quick! Get your responses to our Card Exchange, if you haven't already! Email me at

If English is not your primary language, we'll try anyway!

Last year I asked if anyone wanted to do a card exchange for the holidays. Elena LOVED it! If you sent a picture, we have it on E's Buddy Board at home, and we still talk about you. It has been a great way to remind Elena that there are other kids out there like her--kids who wear braces, or wear glasses, who have siblings, friends, go to school, etc. etc. The best part about it was I didn't say anything when she first saw your picture. But I could just SEE Elena's face recognize she was not alone in her struggle with CP. That is invaluable.

So, I'm starting a little earlier this year. The main reason is--if some of you out there want to share addresses as a group, I will organize that. Keep in mind, we tried to write ~20 cards last year, and it was a real struggle to get E to draw that many pictures or write that many words, and we started pretty early.

If you are interested, please email me ( with the following information:

Your name (and/or child's name), child's age, diagnosis, favorite thing(s)
You address (in full, including country)
How long mail will take to arrive from Virginia, United States (if you know) (particularly important for overseas mail)
What holidays you celebrate, if any, near the end of this year
Primary language

I will not share your email information OR addresses with anyone without your permission. As of right now, this exchange is between E and you. If you are interested in a larger exchange, where your information is shared with other interested parties, please note that--if there is enough interest I'll email everyone privately (by the end of October), and we'll go from there.

Thursday, October 14, 2010

A Nighttime Breakthrough

We've been receiving family/child psychology services for a while now. It really has helped our nighttime issues, which are almost nonexistent now!

I don't believe Elena has major behavioral issues--I think she has outbursts/meltdowns related to her being a kid, or not knowing how to deal with her physical limitations. Having a third party (the psychologist) really took the pressure off the parents. We all made a plan during our sessions, and then we tried to implement it at home. That ended up being very successful.

Elena now goes to sleep easily. She is tired from school, and she still gets Big Girl Time after Vivian goes to bed. Both girls go to bed earlier now, since the sun goes down earlier in the evening (YAY!). Elena has a digital clock in her room, and once the time starts with "an 8", she knows bedtime will happen soon (E goes to bed between 8 and 830). Tonight, she even insisted on brushing her teeth and putting on her PJs by herself (she started being able to put on long-sleeved and long-pant sleepwear 9/22/10, shown below).

I normally read to her as she falls asleep. It takes 5-8 minutes. The agreement is I read while she "rests her eyes and her voice".

We are getting to the point, slowly but surely, where Elena will be physically able to do all the bedtime preparations by herself--getting dressed, brushing teeth, climbing into bed, getting under the covers. We are also working on being self-sufficient in toileting while barefoot--Elena is independent when wearing her shoes and braces, but lacks stability without them, so she needs some help.

In the past, when E has woken up at night (normally needing to use the bathroom, but sometimes just wakes up)--we have read to her to get her to go back to sleep. Depending on how awake she is, it could take 40 minutes, sometimes longer. Our psychologist said to start using the Ferber method during the night wakings, with the hope of eventually putting her to bed without reading her to sleep. She warned us that Elena would resist the change.

The first middle-of-the-night Ferberizing lasted 40 minutes. I'd come in, say "What is happening, Elena?" and she would say something like "I can't go back to sleep" or "will you please read to me". Saying "no" to the "please" was hard. I actually didn't say "no"...the plan was "we are going to try our Plan tonight. I love you, I know you can do this, I know you can go back to sleep." We are NOT to say that we will be "back in XX minutes". We come back if she is still crying/screaming in 3 minutes, 5 minutes, and then every 10 minutes thereafter.

The second night was 8 minutes. Third night she slept through; 4th night was 15 minutes. Overall, the change has resulted in us being up for less time than we were up reading her to sleep! I certainly didn't think that would happen, that fast. It's been 4 weeks now (at least), and now E mostly sleeps through the night. When she does get up, it's normally less than 8 minutes, and she falls asleep without us there in the room. It's GREAT.

Next, we'll be trying to put her to bed without staying in the room. We're not ready to do that yet, but it's coming.

Wednesday, October 13, 2010

Introduction to Jimmy

I posted an earlier post about Just For Kicks, and Coach Tom. Well, did that man ever hook me up!

Coach Tom teaches over at JMU. He started a mentoring program for people with disabilities, and one of his students lived further away from campus--closer to my side of town. And he needed a mentee, so Tom asked any of us C'ville folks if we'd like some help getting our kids active and integrated in the community.


Jimmy is awesome. Our plan is for him to work with Elena once a week, preferably outdoors, doing something active. My goal was for Elena to build confidence outside and realize that she can have fun (hopefully independently) without having to be on a perfectly flat indoor surface. And to do so without having to have ME around. Now...I'm normally around--but I actually get to spend time with Vivian, or admiring nature, or just having a breath to myself without worrying if E is going to get a massive head injury. I'm not sure what Jimmy's goal is, but I'm sure it has something to do with gross motor skills, confidence, and fostering a love of physical exercise. And to boot, Jimmy is going to help us develop a winter exercise program, since there is a good chance that we'll be indoors more often.

So far, Jimmy and E have played soccer in the side yard and played on the swingset, and we've all gone for a bike ride (last week's trail was ALL HILLS, whoops), and this weekend it's a bike ride (same trail featured in 0.8 miles) with a nature walk inbetween.

I have Jimmy for something like 8 any suggestions for outdoor E challenges? Now's the time!

Wednesday, October 6, 2010

Belvedere Plantation Pumpkin Patch 2010

WE LOVE THIS PLACE!! This year we went again with our friends The Teasters. Grandma and Grandpa came too--but there aren't many pictures of them, b/c they were working "behind the scenes"--Grandpa especially, as he took all the pictures/videos featured in this post.

One thing that struck me was how much the kids have grown! Wow! Vivian is so independent, and Elena can do so much more than last's just so wonderful to see.

And now...The Highlights!

The girls on the Bouncer. I know E knows she moves differently...but she still loves it.

Tractor Train

Jason and Rob with their blondies

Sunflower Handys

E's first year on the ropeswing--I nearly had a heart attack when Jason let her go (but she did it, and was suPER proud)

Vivian "feeding a pony"

E and Grandma by the Little Tractor play area

The Zipline--always a favorite! This year E went on the Big Kid Zipline
Viv Zip pic--image error (FIX THIS)

Viv is tired

Oia (with Rob) and E (with me) walking to the animals

E at the petting area with 4-month old baby cow Shannon

E's first time on the Tractor Carts (Jason pushed b/c E was too short to reach the pedals)

Another first: The Cornmaze (with both kids in the wagon)

Another first: The Mountain Slide (tunnel slide--goes pretty fast!)

I took Viv on the ropeswing--she begged to (and it was more challenging than I thought it would be)

Hayride and Pumpkin Cuties

What a day! Thank you Belvedere Plantation! See you next year!

Saturday, October 2, 2010

First UVA Football Game

I had the opportunity to score two cheap seats to a UVA football game. Elena loves sports, and we'd always talked about going to a game...the Stadium, Cavman, cheerleaders, the Jumbotron, the marching band, treats to eat, THE WORKS. And then I got thinking about it...

It's going to be HOT.

I don't have a close parking space.

Strollers are allowed...but only small ones. I'd have to bring a lot of E's gear.

There are a lot of STEPS in that stadium...steep ones. *gulp*

And, there's only one of me.

The Game Prep:

1) I called parking and transportation. When I was a student at UVA, I had a job with P&T so that's to my advantage. They run an Accessibility Shuttle Bus, and it runs all game. The regular buses only run during peak times--hours before kickoff, close to halftime, and at the end of the game. Cars with handicap placards can park for free in the Accessibility lot (ahem--that's accessible to the Shuttle, not within close distance to the Stadium). It helps that the Accessibility Shuttles are the swankest buses around...and that the woman who drove E's Birthday Bus knew we were coming, and was excited to see us.

2) Found out about our seats. Before I scored the cheap ones, I called the ticket window to see what seats were available for us so that I didn't have to carry E up skinny flights of steps (without a handrail), while carrying the rest of our gear. The lady mentioned some huge price. Then she mentioned she had discount tickets--but they were further up. I lit into her--basically, I have to pay more because my child is disabled. That was NOT okay, since there's no way I could possibly safely have access to that section of seats. I was offered the accessible seats for the same price as the nosebleed section. I told her thanks and I'd think about it. Turns out the tickets I got (my friend has season tickets) were literally up two steps, and the rest of the way was up ramps. PERFECT! The dude watching the stairway even helped me.

3) Our seats also happened to be close to the bathrooms--including a private family sized bathroom.

Going to a sporting event, when it's just me and E, is a tough job. Even though a lot of ball parks/stadiums have ramps, the distance one has to cover is amazingly large. E is a tough girl, but right now, if you gave her all the time in the world, she could have made it to our seats--but it would have taken FOREVER. Realistically, it probably would have taken her at minimum of 40 minutes (at her best pace and endurance level), while I made it pushing her in about 6.

Because I want E to be as independent as possible, I bring as many mobility options as I can. Normally this means a stroller and crutches. I also carry a backpack with water, juice boxes, and snacks. Because we wanted to do it up at the game, I also brought a bunch of pom poms, and our cheer banners. Since I'm not going to leave my daughter unattended, this normally translates into me carrying EVERYTHING AT ONCE if I have to go up stairs. E weighs nearly 30 pounds, and doesn't really help me hold her. It's exhausting. Then do it all again when she has to go to the bathroom, which seemed like every 20 minutes (I did keep her constantly drinking, as it was nearly 90 degrees out).

E Cheering on the Hoos

Too Darn Hot

Halftime "Shade Rally"

E and "Uncle K" cheering to the finish

Did we have a good time? Of course we did!! I just wish getting around was EASIER. Does it get easier?? I certainly hope so...