Wednesday, December 29, 2010

Back to Where We Were...Only BETTER

We've been doing PT in her AFOs and shoes since her casts came off on December 10th. Normally, she wears her sneakers only for CME exercises at PT--but her ortho said she'd be too weak in the ankles/calves to do that sort of exercise.

Her AFOs do give her extra stability. She is better able to stay down in her AFOs since her lengthening procedure, and she isn't "teetering" on her toes as much. She can stay standing much better, and her emerging gait pattern (in AFOs and shoes, anyway) is either flat-footed or heel-toe, as opposed to toe-heel(ish) before surgery.

And here's a new one--she's been initiating step-ups (and step-downs) without a handhold. Weight transfer without hand support has been a difficult transition, but she HAS done a step up independently--once--on a 10cm step. So, it's coming, which is very exciting!

But here's another new one--our normal "frog pose"-to-stand, which we do every night at stretches. But NOW, it's slow, controlled, and she can DO IT INDEPENDENTLY, bare-footed!! Right now, she can stand up (and stay there) about 20% of the time bare-footed, and 80% of the time when wearing her shoes and braces. Awesome.

E is more independent and stable than ever. We have started encouraging her to walk barefoot when she can, around the house. She is very hesitant to take her hands off walls, and tends to prefer leaning on objects (furniture, tables) that are low to the ground so she is often bent over while barefoot and upright. We want her to "cruise" while standing up tall; right now the only way this really happens is if I am behind her, walking on my knees, holding her hips. We are a slow pair, and Elena is just getting the idea that when walking barefoot, her standing leg should be straight/tall while her moving leg bends. But, the good news (great news, actually) is that she looks pretty good while she does it. We're a long way from cruising tall or walking barefoot independently, but this is a great start.

Sunday, December 26, 2010

Christmas 2010

Happy Holidays to Everyone out there!

I want to give a super big Merry Christmas to all our Doodle Letter Exchangers--love the pictures in this year's crop of mail!

This holiday season we spent celebrating all December long. Writing letters, making ornaments, tea with Mrs. Claus (Solo Mom Status, with a room full of crazy kids running around and Elena and Vivian in different directions--not my best showing), making a gingerbread house, making Christmas cookies, watching The Nutcracker (or, as Vivian calls it, The Dancing Cracker--the Baryshnikov/Kirkland video edition)--it was a wonderful month of celebration, togetherness, and creativity.

And it was a very busy time, especially regarding Elena. She had a rough patch of moving around post-op/post-casts, but overall, she was a great patient. Between that, Christmas, family, work, and home, there wasn't much time to blog.

Here's some highlights:

Visiting the Clauses (Vivian refused to sit without Nana)

Jason's Holiday Work Party--this is the best picture I got

Sledding after our first snow

E and Viv at the "after nutcracker suite" gathering with the Charlottesville Ballet

E with the Sugar Plum Fairy, The Nutcracker Prince, and Clara

Christmas Morning--E and Viv play nicely (!) together (!!) with the "Dollhouse Castle" from Santa

Viv's Flute--thanks for that loud gift, Grandma and Grandpa

Grandma and Grandpa have better pics, so I'll put them here once I get (find) them.

Monday, December 20, 2010

Walking, Interrupted

I have to admit, I'm frustrated.

I figured E would have some weakness, soreness, and fatigue easier after her surgery/casts were removed. I figured it would last a while, with the worst of it over after a week or so.

I also figured after her STELLAR PT performance the same day as her cast removal, that she'd be sore.

What I didn't expect is that Elena would REFUSE TO MOVE. Refuse to stand up tall. Refuse to walk. WHY?

I figured it was mainly due to soreness that she felt the day after PT. I was nice, sympathetic, and I carried her more often. Five days later, we were barely making any progress. Is this normal? I really wish someone would have prepared me.

E is a lot more verbal/antagonistic toward moving with me than others, particularly Theresa. Still, after she's reached her limit (about ~40 minutes of PT) literally she is DONE. She'll sob, cry, hobble, literally become a cripple after an amazing 40 minutes of movement. I am very confused.

*updated 12/26; she is moving better now, but still reaches her limits before the end of a PT session. After about 30 minutes rest or so (or proper motivation, like a mini-Slurpee or something) she's moving great again. I guess this is fatigue? I'm still not sure. Technically, she's been walking for less than 2 weeks post-casts, so, maybe it's early to be frustrated?

Wednesday, December 15, 2010

2010 Review of New Year's Goals

I wrote a post in January this year regarding what I'd love E to accomplish, in terms of motor function, sociability, and independence. Here's the review:

--E will be completely potty trained. Well, we're still on the mostly part. Mainly due to surgery weakness, at this point. Elena can walk to the bathroom, independently undress and dress (even when wearing a dress), wipe herself, flush the toilet and wash hands and exit the bathroom. I trust her to do this if the bathroom trip only involves pee; a bowel movement may require help. Currently, she gets intense supervision b/c she's still getting used to her "new legs" post-op. Overall, I consider this goal a pass.

--E will make some progress to get her clothes on herself. CHECK. E can dress and undress herself, including socks (we have to pull them all the way on, but at least she gets them on), pants, shirts, some dresses, and jackets. We don't make her to it before school b/c we're pressed for time in the morning, and dressing takes a while. She can undress more quickly than dress.

--E will be able to ambulate barefoot at the pool without scraping the tops of her feet into a bloody mess. CHECK!! We did this last Sunday, at our first pool visit post-op! She looked GREAT. She walked with one crutch and one hand. It took us 10 minutes to actually get all the way across the deck, but she did it, and her feet looked GREAT and FLAT. YAY!

--E will be able to move backwards in some way. We didn't really make progress on this one. I wasn't trying too hard. She can back up when against something, but she could do that for a while. No independent backwards movements--well, maybe a little with her crutches.

--Elena will jump, and get some air under her feet, without holding on to something. CHECK! She jumped AND landed a while back, with her braces and AFOs. Most of the time her jumping is while holding on to something, though.

--E will be able to go up and downstairs herself, with supervision. CHECK. With close supervision (not touching). We haven't worked on this lately due to her lengthening operation, but we'll get back on it once she's stronger.

--Elena will be able to hold hands with a friend and walk a little. CHECK! Last time we did this (that I remember, anyway) was at the Pumpkin Patch with our friends, The Teasters.

And, well...goals for me, not so much...

--Keep up with this blog. CHECK.
--Commit to doing CME exercises with E at home. Once a week, for a good 20+minute session with block equipment. NOPE. I did it for a while, but got lazy.
--Spend some one-on-one time with Vivian. CHECK. Not as much as I want, but, I do get to spend some time with my cute little tornado.
--Try to find some time for myself. HAH. Does soccer count? If so, then CHECK.

I've been working on next year in my head. I think it's going to be a Very Good Year.

Friday, December 10, 2010

Casts Off!

E got her casts off today!

In a nutshell...the results are amazing. Fantastic. INCREDIBLE. No, she's not jumping around or doing the moonwalk--but her range of motion is pretty darn good, and she isn't as weak as I thought she would be after being in casts for three weeks.

Here's a video a half hour before casts are removed:

Waiting for the saw



After her feet were (finally) washed, the doc checked her out and then we all stood there while E walked away with her crutches (and AFOs and shoes). E's feet were DOWN. Solid. I was shocked. I think we all were, a little.

E had a PT appointment a few hours later. The doc said we should keep her AFOs on for PT for a few weeks, b/c he doesn't want too much strain on her ankles until she's a bit stronger. No prob. Theresa sort of "took stock" where E was--and wow, was she impressed. We all were!

Squat-to-stand (very little help here)--E has noticed she doesn't "teeter" as much, as her feet can stay on the ground while she stands up.


Slalom Walking (WOW!)

Walking back to the other room, at the end of PT (HEEL STRIKE!! WOOOOO!)

And then walking to the car with her crutches--HEEL STRIKE, RIGHT AND LEFT!!

I was ELATED. This was just a few hours after getting her casts off...I mean, what will she be like after months of therapy? This is like a brand new start. I feel so strongly that 2011 is OUR YEAR--as in, walking. Carrying a liquid in a cup? Moving backwards? Stepping out of the bathtub? Being able to walk (in any way) at the pool? Getting on the bus herself? Picking up and putting away toys? Hey, maybe even RUNNING. I don't want to get ahead of myself, but seriously, she looks THAT GOOD to me. Such a small change in her structure makes a GIGANTIC difference!!!

Sunday, December 5, 2010

Don't worry Mom...I got this

Well, E's had her casts on for over two weeks--and she's doing awesome. She hardly complains about them, even though I know they are not comfortable. She's using her crutches now, and cruising around the house (ADD VID HERE). She's also taking some independent steps across the room.

She doesn't walk with her right foot "flat"--she never has, really. But sometimes I see the "swing" of her step, where her foot is straight at the knee before she puts her foot on the ground--that's new. I'm trying not to get too excited about it, though...I know there will be weakness post-surgery/post-casting.

And she's a lot more confident every day. I had the both kids on my own a lot last week, at appointments--which was scary, as Vivian doesn't stay with me/listen very well, and E needs close supervision too. Well, I carried Viv and tried to "spot" E as we walked a good 200 feet into a building, on cobblestone, while E used her crutches, and it was freezing outside. I was worried about her; I didn't want her to fall.

"Mom, you take Vivian. I got this."

She sure did, too; she walked the whole way, certain steps (even in her casts), and never teetered. It's been like that since last Wednesday. We're also back to our bedtime routine, and even though E wants me close, she is settling in well to our successful regimen. Things are just great!

This week is huge: E has her eye appointment (we've known she needs a new prescription for months, but we couldn't get in any sooner--and the doc is worth the wait), and she gets her casts off.

Saturday, November 27, 2010

Post-Op: 9 days

Well, E has been making slow and steady progress. I was starting to get discouraged...E's been crawling and getting into chairs, but really up until today, she hasn't done much standing; zero walking, and no cruising. Well, today's different!

Yesterday E tried the treadmill. We spent maybe 5 minutes on it, and most of that was just trying to stand up tall.

Today, we did 20 solid minutes of walking and standing, where I was moving her legs slowly, and aiming for strikethrough with her right foot (this stride is typically very short) and it was well-tolerated. Elena was definitely gripping the handlebars tightly, and complained that "her hands hurt"--but she was also bearing weight in her feet, which was the goal. I stopped when she said she was done.

Later on that day, we went to work; E can't use her crutches yet, and we don't have a walker. Cue The Beach Walker! E even ran a little bit (on the "toes" of her casts). We got a "coffee" and then headed off to Feldenkrais.

E was pretty warmed up (and silly) by the time we got there, but she had a great time with Mr. Keith. We haven't been to F'krais for about a year. I like the way he's focusing his efforts on different parts of her body since her feet are in casts (today was mainly her obliques, I think--their recruitment for walking).

We had some friends over for dinner; all the kids played, and then we got ready for bed. Tonight is E's first night with casts, without Valium; so far, so good.

Monday, November 22, 2010

Post-Op: Day 2, 3

Day 2:

E has been on Valium 2x day; one dose in the morning, one dose before bed. She has been sleeping well. This early afternoon we went on a stroller ride to investigate Santa at the Omni Hotel. E was excited! The trip lasted about 2.5 hours; E (and Vivian) started melting down before we left. Both were tired; I think E was a little sore.

E got Tylenol, then took a nap.

E can sit in almost any position, to color or play, for a long time now.

She crawled a little, and we can carry her normally now (hands below her rear instead of "cradle" carry). Passive range of motion exercises show she can easily extend her legs, nearly fully, without pain with her ankles flexed in her casts.

Day 3:

E is crawling and can get into a sitting position on a low stool by herself--this requires some weight bearing on her feet, but she's doing it on the "toes" of her casts and strong-arming the rest on a nearby surface. I can undress her for toileting by resting her feet ever so slightly on the floor while she holds on to my neck (she is holding most of her weight off the floor). E tolerated some ball exercises (small circles while she was sitting on the ball, hands either to the sides or not holding on at all). She can do her own range of motion movements (while lying down, bring knee to chest, then back down with her leg straight on the floor) but her control going "down" is poor (I hold her leg so she won't "bang it" on the ground). She can do full bridges with her pelvis, which also requires weight bearing on the heels in her casts.

We tried partial standing; she was nervous to put any weight on her right leg. She can be placed in a half-kneel position on either leg, without pain, but I haven't had her get in that position independently.

She is still sleeping in bed with me, b/c she has trouble repositioning herself during the night, but only b/c the pillow between her legs is too big for her to move. I am hesitant to put her in her own bed until I know she can get out of bed (bear weight on her feet enough to get to the ground slowly) safely. The "sleeping with a parent" issue is a big one for us, b/c we've had sleep issues for a while and *just recently* (pre-surgery) were making such excellent progress. E is very rational regarding her sleep arrangement--she knows as soon as she's more able, she'll be in her own bed. She seems to be very calm about this (we'll see what actually happens!!).

Saturday, November 20, 2010

Post-Op: Day 1

Day 1.

E is well rested, and all kinds of talking and laughing. She does not like her legs to be straightened. My goal was to try to have her sit in a chair and play today, and see if she could be carried more traditionally (upright, with my hands under her rear, with her arms around my neck) rather than a basket carry (her neck and back and her knees held up by my arms with her folded inbetween). Both of these were successful, although E preferred the basket (or "cradle") carry. She was also able to sit up, with her knees supported by a cushion underneath, and watch TV. We colored a lot, and she ate well. Well, a lot of popsicles, anyway.

I even got to do a "dry run bath" where I propped her on the floor, with her feet up, and pretended I was washing her--to see how much pressure I could put on her legs, to see if I could turn her hips, and test her passive range of motion. Even sore, I could tell that she could keep her legs straighter than before the surgery.

She slept all night.


We had a motto for today:

"Let's Do This."

E was ready. We brought her favorite buddy, Mr. Pink, with us--he was having a procedure too.

She was fine up until the anesthesiologist carried her away. She thought I might go with her to the procedure room, but that isn't customary, and it was never really talked about. I'm sure she cried, but I never heard it. My heart broke just a little when I saw my brave girl go through the double doors, but I honestly believe this is a very good decision. My nerves were okay; this procedure didn't freak me out hardly at all--SDR sure did, though. Everything after that seems to be a cakewalk. ;)

An hour and a half later, I got called in to the recovery room. I was a little surprised; I didn't expect E to be crying so much. She was in a stupor, given her sedation; I also know from previous experience, she has a hard time with feeling woozy. She whined and cried constantly that her throat hurt (intubation during surgery), and her feet hurt to move. She had prickmarks down the back of her yellow-stained legs (from percutaneous lengthening of the hamstrings), and her feet were casted in a 90 degree angle at the ankle (after traditional lengthening of the gastrocs), encased in hot pink. The nurse gave her some morphine and fentanyl; she quieted down. She also gave her an oxygen tube, which she taped to blow gently in her face (oxygen saturation drops after patients get morphine). After a minute or two, E's eyes popped open. She grabbed the tube. She finally spoke something intelligible:

"That thing is annoying."

WELL, if there was any doubt I'd see my typically E that afternoon, not anymore.

I worried how I would get her home, given her pain; she had to ride in a carseat to get home, and I had to move her several times. She never once complained. I think she just wanted to get home.

Once there, we propped her on the couch and put a pillow under her knees. She rested; we watched some movies, but mainly I gave her liquids as tolerated and rubbed her stomach. Using the bathroom was difficult, as it was a two-person job. Annette and I traded duties with the kids--one of the priorities was making sure squirmy Vivian didn't crawl all over E. I gave Elena tylenol+codeine--which she'd had trouble with in the past--and after one bout of vomiting, we gave up on it. She tolerates Valium, so she's on that every 8-10 hours as needed.

Later in the evening, she was ravenous; she hadn't eaten anything all day. After inhaling pizza (I didn't think that was a good idea, but oh well), fritos, pretzels, and a bunch of other things, she seemed more herself.

She slept all night the first night.

Overall, A LOT EASIER than I expected.

Surgery Eve

E was knew the surgery was happening. Sometimes she would get a little anxious, and tell me "Mom, I don't want to do the surgery" (normally she'd say that during stretches, if she said it at all). I told her after she was all healed after surgery, stretches would be easier than they are now. "Well, then...I want to do it." Ever the practical one.

I told E we would paint her nails (a "mani-pedi") before her surgery. What I didn't tell her was I was going to take her to a REAL salon! E was tickled.

They had "a chair with a sink". She couldn't sit on the chair, so we improvised during her "foot soak".

E getting a "sugar scrub" on her legs--smelled so good!

The Toes: Hot Pink with Pink Sparkles

Now the Manicure

The Fingers: Mermaid with Gold Sparkles

Thank you so much Madison at Moxie, for the fantastic VIP treatment! Her nails look FAB! (And all the doctors and nurses noticed--immediately!)

A Day in Gym

I took the afternoon off, to get some vital errands done before E's surgery the following day. One thing I really wanted to see was E in her gym class.

Her kindergarten class has PE 4 days a week. She has Adapted PE once a week (I think)-but even before being assessed for that, her gym teachers have always tried to have her involved as much as possible. E loves PE, and talks about her PE teachers almost every day.

The school PT suggested E get a gait trainer--it has been AWESOME!

E listening to the instructions for the PE game

It lets E try to stand alone, move in any direction, run, and use her arms. She fatigues easily. It's also obvious that lateral movement is not intuitive for her (moving sideways or stopping sideways)--but I can tell she LOVES having the chance to move like this.

What I most enjoyed watching was 1) how well E's aide is there when E needs her, yet she's practically invisible in terms of the kids doing the given PE activity and 2) how GREAT E's classmates are with her. They give her a wide berth, but also try to give her a chance to kick balls, throw balls, be in line...just be a NORMAL KID. It makes me tear up. Even though she's different, she's very much included. *snif*

Monday, November 15, 2010

A little anxious...Surgery is THURSDAY

Elena is having a tendon lengthening procedure in three days.

We knew this was coming-- I guess with kids with SDCP, it's more of a "when" than an "if" type of situation. I understand parents' and therapists' opinions about not wanting invasive procedures done...but I feel incredibly strong that her quality of movement cannot be addressed with different types of "stretching" therapy.

SDR was a great choice for us. I still feel that way--E's spasticity has decreased tremendously. That has been a life-changer. But living with spasticity like she did for the first four years of her life made its mark--her calf muscles/achilles tendon are short, and her hamstrings as well. She has femoral and tibial inversion (CONFIRM THIS IS THE RIGHT NAME), where her bones have twisted--it's not bad enough to warrant a surgery for this right away (hopefully ever), but more proper weight-bearing will only help her structure--and should be done before age 9. She also has almost a "rocker foot", where the bones in the arch of her feet have broken down due to improper weight bearing (on the midfoot, as opposed to the heel), and this will eventually cause pain.

Elena will have percutaneous lengthening of the hamstrings (both sides, more on the right) and standard lengthening of the calf (exact location HERE) consisting of approx. 2 cm incision on each leg. She'll be casted below the knee ("walking" casts) for three weeks.

My expectations are that Elena will be able to stand up tall (after regaining her strength), hopefully with her weight evenly distributed on her feet (as opposed to her toes) and have a better foundation for balance.

We have several Feldenkrais sessions booked, to ease E into a new movement pattern during and after casting; we'll also continue her "normal" schedule as best we can (school, PT, scouts, Jimmy Time--unfortunately hippotherapy and yoga classes end this month) with a lot of holiday activity in the mix. An added PT session/week (CME) will hopefully happen early 2011.

Saturday, November 6, 2010

Camp Holiday Trails

Today we went to Special Needs Family Day Camp at Camp Holiday Trails. I wasn't sure what to expect...we had looked into other camps around the area over the summer, but the terrain seemed IMPOSSIBLE. I spoke to the guy in charge, and he made sure I knew that this camp would work with Elena. Camp Holiday Trails is a camp for people with special health needs--not just special needs kids. So they know.

Elena was the only kid there with a motor impairment. Well, let me other kid had mild CP, but he could walk and run. All the other children had some sort of behavioral issue (siblings, of which there were a few, not included). I have a hard time believing the ratio I saw today: physical disability (only):behavioral disability was 1:15 or so. The camp invites all special needs kids out for today, and most of the kids were on the autism spectrum. I have a feeling that the autism community is a tighter knit group, so that when there is an event, more of them come? I don't know. I kept thinking, "where are my crutch kids?" or wheelchair-ers...then again, when parents of kids who have gross motor difficulties hear "campground/woods/hills/hiking", they're probably thinking "NO WAY". I wish this wasn't the case.

Anyway, all the kids were pretty good. In the morning, WHEW that room was LOUD! Then the counselors rounded up the kids for art in the downstairs room--so the parents got to be ALONE, with OTHER ADULTS THAT UNDERSTOOD THEIR SITUATION. How nice! It was really great. We all got in a circle and introduced ourselves and our kids. Some parents I thought were going to cry. Others were so happy to be there, to be a strong source for others. It was fantastic, even though it was only for a short while. We also tossed around some questions to the group--what a great source of information!

E and Z playing

The kids came back, we had snack, and then ventured outside for climbing on the rock wall. YUP. A climbing wall. A great activity for building confidence and encouraging other kids--most of the kids really enjoyed it. I spoke to a rockstar of a counselor, Stephen, about the possibility of E going to "climb".

"Of course she can!" he says.

I'm not so sure...I didn't think she would be able to right herself in the harness in free space. Stephen went and got another harness--Elena was the only kid to wear a full-body harness instead of one for just the lower body/groin. She was very excited. I was nervous. I asked Stephen to go with her. He was glad to do so. Super Mike was on belay; I don't think he's really shown in the video, but he certainly got a workout today.

Stephen and Elena are "fist-pump" ready for the climb

Super Mike testing E on belay

I thought she would make it to the first rubber chicken-but she was determined to make it to the top. WHY NOT? YOU GO, DOODLE!!

After that we had lunch, and then more playtime, and then off to the horses. Unfortunately we didn't get to ride--we did do a photo scavenger hunt, which was fantastic--but Viv started melting down before they could ride. We all came home and passed out--every one of us, including me.

Monday, November 1, 2010

Halloween 2010

We love Halloween--E loves to dress up, and now that Vivian has discovered the mirror, she does too. I try to incorporate E's assistive devices into her costume...but that typically means handmade costumes. Sure, they're cute, and fun...but time isn't something I have a lot of these days. I did have a lot of coffee, though, so I managed to put E's costume together over a bunch of late nights.

We were kindly offered Viv's Bee costume (Thanks Mo!). I asked E what she wanted to go with it.

"MOM. I don't want to be a beehive--THAT'S BORING." E whines.
"Okay, can you think of anything else that goes with a bee?"
"NOT A BEEKEEPER. I won't be able to see."
"Okay, anything else?"

E starts to get excited. "How about...a bigger bee. I KNOW--a bigger bee that EATS the smaller bee!"

Well, I went on youtube and looked under "insect eating bee" and found a video. I did not preview the video first--so E and I simultaneously viewed some pretty gruesome footage of a praying mantis devouring a cute, fuzzy bumblebee. {shudder}

"THAT IS IT!" says E. Ummmm.....okay, I guess. ?

Our first party was Friday night, at the Children's Hospital Boo House. I had heard about this, but never made it in previous years. We had a great time--lots of crafts and games for kids, structured so everyone could play. Free dinner, and a trick-or-treat line with lots of UVA volunteers. Very cute and fun. E and Viv had a blast! I couldn't spend that much time taking pictures, but I have a few...

On Halloween, the girls refused to BOTH be happy and looking at the camera at the same time, but I tried...


Then, getting ready for Trick-or-Treating! We live at the top of a cul-de-sac hill. Our goal throughout the years has been for E to do the top 5 houses by herself--or as much as possible. When she used a walker, she could only do the flat parts (not very much). Last year, we had her to the driveways as much as possible, and the sidewalks up to the house doors; we pushed her in the stroller between houses. This year, she did almost all her trick-or-treating by herself! She did get carried down three steep driveways (but walked up them), and then carried home (up the hill) when she was done. But she went to at least 10 houses, as she went down the street! By herself! She only fell 3 times, and all of those were when she tried to take a shortcut through grassy areas (instead of pavement).

My Bee Vivian

E is a hungry Praying Mantis, sizing up her prey

In pursuit of candy!

Happy Halloween!

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!