Thursday, December 31, 2009

Christmas in Review

Our First (real) Christmas at home! I say that because this is the first year we've celebrated Christmas at our house without traveling elsewhere to see family (they came to us this year). What a treat! I have to admit, it was stressful...and I didn't get everything done that I wanted...but I think the holiday went well. Here are some of our new traditions.

Advent Train
Since E knows her numbers and can count, I'm starting the Advent Train. We've had other Advent calendars, such as the Little People Advent Calendar and a family heirloom, but the Train is different. I put in a little note in each box, and every day E can read her little challenge--which typically entails a Gross Motor Exercise and a prize. For example: Without holding on or falling, walk to the front door to pick up your prize from the floor (dollar store treat). Or, stand up two times from the floor (without holding on to anything) and get a Nutcracker Dance with Mommy (where I hold her and dance around the house). Or, help Mommy clean out the dishwasher (she takes out and puts away the spoons) and take a Christmas Bath (red and green theme). We didn't remember to open a door every day, but overall the Train was a hit.

Decorating the Tree
We give E a not-too-breakable ornament; then we do a CME-lift (INSERT VID HERE) for her to put it on the tree. If she is hanging it by herself, she walks/starts/stops on her own and she has to stand tall during or after hanging. She never fell ON the tree, but she did fall several times beside it.

Christmas Music
We play Christmas Music after Thanksgiving until December 31st. This involves a lot of singing, and lots of dancing around the house. E has gotten better at shaking her hips and dancing without holding on, but is working on her "turning in a circle". E loves to dance and sing, and I'm trying to encourage that.

On Christmas morning, E preferred to make coffee with Nana rather than rush to open gifts. She really appreciates her family being in town (Nana and PopPop live in New Hampshire, and come down for short visits when they can--this ended up more of an extended visit, which was a great blessing in many ways). E got several nice gifts, a few of them being a new pink play kitchen (set aside from her little house to encourage walking and carrying light objects), some educational games, and my personal favorite, the Barbie Guitar. This is her first time using it...guess she's a natural!

My family came down the day after Christmas, and we had a great day just hanging out and playing. E gave us another concert, which was great, and of course Vivian was into everything, as she's now a walker (and starting to run around some). We had so much to be thankful for this year...E is so much more able, and so supportive of her little sister; Vivian is healthy and doing all the age-appropriate things she should be; we were lucky enough to have our families with us this year, and were given the opportunity to witness how precious life and family is. Merry Christmas!

Thursday, December 24, 2009

A Wonderful Gift

Today is Christmas Eve. We got the most wonderful gift today.

I was home with the kids, and Jason was at work. It was a typical day off--me still in my pajamas, as I hadn't had enough time to get myself together, as I was tending to Vivian, keeping her out of danger (now that she is walking), getting E exercised, both kids fed, not fighting, etc. I had just put Viv down for a nap, and was getting E's lunch together, when something extremely unexpected happened.

Our doorbell rang.

Two neighbor girls were at my door in their snowsuits.

"Can Elena come out and play?"

HUH? Honestly I did not know what to say...this has NEVER happened before. Sure, E has seen and probably played with these girls in some fashion, maybe while we were all on the same swingset in the summertime. Or some other time when everyone was already outside. But for someone to approach our door, blindly, asking E, without provocation, to come and play? IN THE SNOW?! The conditions could NOT be more difficult...I mean...were they serious?!

I asked the girls inside. I directed my caution at M, the older of the two girls (she's 10). "I hope you realize Elena to handle, especially in the snow..." "Oh I know. I see E every day at school at recess. She gives me a hug every day. I can handle it."

I'M SHOCKED. "Okay..well, I can't go outside with you girls, as I need to be with Vivian...but I'll come out as soon as I can. You just come in the door and holler if you need help."

And I'm thinking, OMG they are going to come in and start yelling that E is face-first in the snow and they can't get her up or something. I'm trying not to freak out, looking out the front window as they help her into the snow. They play in the snow fort we made up the past few days, and they're just hanging out. WHEW.

Then I start crying. No one has ever come up to our house before to ask if E can play. EVER. It's just so...normal. And these girls weren't phased at all by E's difficulties...they were so nice, encouraging, sweet. So I got on the phone to M's mom, trying not to cry, but thanking her so much, as this little act of friendship meant so very much to our family. M's mom said 1) that she didn't know anything about M's plan to ask E to play, and 2) M talks about E just about every day. She says she has really noticed how she has changed this year. I'm amazed someone so young notices so much about my hard-working daughter.

Then my door opens. "Is Elena allowed to sled?" asks A, the younger of the two girls. "Sure", I say, wondering how they are going to get E up a considerable-size hill in thick, slick, iced-over snow. I start figuring out a way to get Viv's monitor outside and put on my boots/coat over my pjs. I run outside...

To see that M and E have already gone down the hill once. E is LOVING IT. I have no idea how M's little 10-yr old body could hoist E up that hill, I'm sure E didn't walk up it herself, but somehow they did it. I got out and helped, as I'm sure they couldn't carry E forever. I'd help E walk up the hill, then they would sled down with her. A's dad was outside, and again, I broke into tears about how special this day was. He has 4 kids, all normally developing...but he understood. Both M and A both have younger siblings, so if they wanted to play with someone younger they could have. But they came to our house, to play with E, to help her and just be around her, b/c they felt like it.

The most ordinary thing in the world, right? No...not for us. For us, today was extraordinary.

I can't say it enough...and I wish I was more eloquent in this post, but I'm tired and emotional...


Sunday, December 20, 2009

A Nighttime Admission

I wrote an entry a long time ago about kids and their sleeping issues. I have pretty much chalked up E's waking up and crying/screaming issues to bad parenting...we must be reinforcing some bad behavior, but we don't know what it is, and we haven't figured out how to stop it. In short...E rarely has a "good night". By rarely I mean...once every two weeks? Maybe?

We try to "switch it up" when we can, and that's only after some big change of events. Like, if we have to spend the night in a strange place, then when we come home, instead of going into E's room if she screams, we'll approach her door and say "we will come in when you speak to us in a nice voice". Recently, E was sick for a whole week with strep throat. So, screaming only made her condition more painful, which made it even more to cry about. So we held her on the couch. We cuddled with her when we could. I mean, E was miserable, she was sick, she was throwing up, she was feverish...she needed to be coddled and loved, so a parent was with her or on a neighboring couch all night. We started gradually weaning her to her bed, as she got better. And so here we are. Again. Same issues.

What issues? I HAVE NO IDEA. She goes to sleep fine. She just wakes up every night. Sometimes she's not fully awake and crying loudly...I come in and whisper "Elena, what is happening?", you know, in case she says she's being eaten by a dinosaur or something. Last night I got a "I can't stop". (this is a big deal, normally I don't get any words) "You just can't stop what?" "I just can't stop being bad" [SCREAM]! Here we go again. is my confession. I've been harboring some harsh judgement for some parents who "medicate their kids" to make their lives easier at night. Like, they don't even give their kids a chance to behave before they've already shoved a pill in their mouth. I'm pretty opinionated about that. And to be frank, I know some parents who now medicate their kids, who felt just like I do about it. Well, when E was sick, she had some codeine-laced concoction for pain and to help her sleep. I remember from SDR, she doesn't do well with codeine, it seems to make her nauseous. It did make her sick, but only a little, and after that she slept pretty well. I didn't want to do that again, but I considered using Benedryl, which is what some of the "medicating parents" give their children. I insisted it wasn't for my convenience, but for E's, who has had 5 very sick nights and needed rest to get better.

The night was just about perfect. I admit it. She got up once, I pressed the blanket to her, and she went back to sleep.

The next night I thought maybe the memory of a good night's sleep (she acknowledged she felt great the next morning) and a fun tiring day would be enough for another good night. WRONG. And so here I am writing this post.

So here I am. I feel like a failure when it comes to nighttime parenting with E. Jason and I share this frustration. We tend to tow the "hard line", meaning we show E we are not going to put up with screaming behavior and remove her from her comforts. We don't spank, we don't yell, but we use silence as a reinforcer and explain things in nice voices when she is ready to listen--which she does, and she does acknowledge she has been behaving badly. I think she gets the idea of punishment (in this case, she doesn't get to return to her nice warm bed after a meltdown), but she sees it coming and then gets upset b/c she knows what will happen. She understands choices, and knows the choices are hers. And yet this happens just about every night.

What I am learning is this is a huge stress for my husband and I. That one night when Elena isn't a nighttime problem, was as if the Heavens opened up and music started playing from the parting clouds ("aaaah!"), SERIOUSLY. If we could fix this, our relationship would improve so much. So here I am.

I'm going to try one week of Benedryl. I'll write a post about it and my thoughts once it's over. I feel defeated...but maybe one week is all I need? To get E in a good pattern? It is worth it to me.

Sunday, December 13, 2009

E's Winter Party

I had an idea of throwing a Winter Party. This was a big deal to our family, as this is our first real winter where E is partially independently mobile. (I'm not sure if "partially independently mobile" really makes sense, but she's a LOT less work than last year, and she can do so much more now.)

I called up our local ice rink and told her my situation. Big party, lots of kids, and oh yeah--my kid has cp, is this going to be a problem, yada yada yada. The assistant manager instantly came out with a disclaimer that the ice rink is happy to accomodate kids with special needs. I was a little surprised. The day I picked was perfect--there happened to be an hour block of time between two scheduled events, and the park wasn't going to be able to host a public skating session in that short amount of time--so they gave me the private ice time for free. We had dinner catered at the park for our guests, and worked a reduced group rate for the skate rental/admission.

Everything was a go...until we got there. There was a snafu with our private ice someone was already using it due to a schedule mix-up. Like I mentioned before, we were sandwiched between two other events--so we had a limited time to get our ice squatters off before we had to vacate for another group. This was a challenge, b/c person in charge of the group on the ice during OUR time was a real jerk. But kudos to the Charlottesville Ice Park Staff, b/c they were really nice about dealing with this problem, and kept a pretty cool head while I was just about blowing my top. I'd also like to personally thank the lady in charge of the hockey group that was using the ice after us, but I forgot her name....she was very nice and understanding, and had my back the whole time. Due to the snafu, the assistant manager waived all fees for rental/admission.

Everything worked out, though...our friends loved dinner, and had a nice (?) time eating (and waiting) and getting their skates on while I ran around and tried to get our ice time. The kids got on about forty minutes late, but everyone got to skate, and seemed to have a great time. The hockey team got to warm up while we were out there, and even helped the kids skate around too, which was so nice of them! We only ended up having 20-30 minutes of ice time--but that was PLENTY, as most kids were done before I had to usher them off the ice.

A nice bonus to this little party was just about all of E's friends were new to ice skating, so it worked as a great equalizer. Everyone had issues on the ice. FYI: E wore her DAFOs in her skates--they were a little tough to get on, but it wasn't too bad. Overall Elena did a good job of "keeping her feet under her", even if she was holding on to my hands strongly the whole time. E LOVED skating...and boy was she tired!

Mommy and E just before we get on the ice

Here we go!

E and I skate to Grandpa

I tried holding only one hand (and alternating hands). We did it a little, but E wasn't very comfortable that way.

A lot of the kids had barrels to hold onto; E didn't like it. My guess is she had to lean over to hold on, which made the toe pick stick on the ice.

Thank you hockey players! E was so proud of herself for "skating with the big kids"!

What a great time! Big thank yous to Charlottesville Ice Park, Sticks Kebob Shop, to Grandpa for filming/taking pictures, to Grandma for watching Vivian, and to all our friends for making this such a wonderful experience!

PT Recap: Post-CME workshop

A couple of weeks ago we started our post-CME course regimen. Theresa did some of the new exercises she learned at the training course. She needed a spotter for some of them, so I didn't get them filmed. Here is one, where she is working on core strength and E's righting reflex (she does both sides; only one side shown here).

E also did some of the other exercises previously shown, with Simona as E's operator. E wasn't particulary cooperative, but it's relatively new to her so she's still not thrilled about the feeling of people holding on to her ankles while she exercises.

I also got a regimen to do at home, but I'd rather show them while we're filming at home. We haven't had much practice, b/c E got really sick for a week (and then I got sick too).

Welcome Winter!

The winter season is upon us! Recently, we got a good snow here. In previous years, this spelled disaster for us, b/c E was not very mobile and snow was impossible terrain for her. Sledding was really difficult too, b/c she had issues staying upright on a sled (oh, and we don't have our own yet). It was a lot of us trying (and failing) to entertain her in the snow, when she really wanted to be doing what the other kids were doing. Last year it was heartbreaking.

But THIS year, things are DIFFERENT! E has been so excited about snow. The minute she saw it coming down, she wanted to make a snowman! I had bought her a new that morning, she and daddy set out on their mission.

I give you E's First Snowman!

She even rolled the ball for the head herself. Then she and Daddy made snow angels.

We also went to a little festival welcoming the Christmas season at a local shopping square (previous week). They had some dancers from the Charlottesville Ballet, who danced some scenes from the Nutcracker. E loves that music, so seeing REAL ballerinas was a great treat. It was pretty cold that night too...tough to be in a tutu and tights, brrr!

And of course, she was excited to see Santa!

Friday, December 4, 2009

Review: Cuevas Medek Exercise (CME)

This week has been pretty crazy! Simona DeMarchi came to teach a CME Level 1 Course in my town. The course was for therapists, but Elena was used as a model throughout the course.

I can't tell you much about the instruction. I do know that they use dolls for much of their course, and then they had volunteer kids as models. After observing what they do with real people, I can't imagine trying to get certified using mainly dolls...using real models are SO much different.

A sample modeling portion would go as follows: Simona would discuss an exercise in the CME manual. She would describe the usual patient for said exercise, and then how she would go about it. There were a number of models in the room--four different kids, of different sizes, ages, tone, and diagnoses (for instance)--and Simona would then demonstrate that exercise with each child, highlighting their differences and the difficulty along the way. For the kids, it was a lot of waiting and being patient before being asked to do an exercise. I think it was a lot to ask of these kids, to sit/behave/be quiet for so long--but absolutely necessary to really convey how CME can be used for all sorts of patients. I'm happy we got to be a part of someone's education, and E was a champ the whole time.

CME, from what I was observing, is all about "provoking" movement patterns. The therapist doesn't try to tell the child what to do--the idea is the desired movement should happen naturally and hopefully evolve to a normal response. The exercise to provoke a certain movement or balance response may seem extreme (which is why you need a skilled, certified therapist), but I guess when you have a child with tone issues you need an extreme provocation to jump-start the emerging movement pattern.

Another BIG thing about CME is orthoses and assistive devices are not permitted. Children wear shoes for safety, but not AFOs, crutches, walkers, etc. Most exercises revolve around simple materials--blocks, boards, traction material.

What do I think? In a nutshell, I'm pretty impressed. Simona is confident, knowledgeable, patient, and personable. Elena liked her (and the other therapists in the room). I think E could benefit tremendously from this method--but, I'm not ready to exchange all our current therapies for CME. Two big obstacles are TIME and resources, as CME providers/time slots are very limited. I'd love to start a CME regimen, as it is extremely challenging for E--and it's great to keep therapy fresh, so E doesn't get bored. I am very interested in what it can do for her.

So, how did E do?

Before Simona suggested exercises for E, she needed to be evaluated. There is a battery of test exercises to determine her ability level, based on protective responses, righting responses, and movement. Gross motor-wise, most people reach their definitive movement patterns by 18 months of age (walking, running, jumping, falling, sitting, lying down, rolling, and transitions). Elena's test results put her gross motor skills equivalent to that of a 14 month old.

There are a LOT of exercises applicable to Elena. Some are appropriate for the level taught in this week's course, some are not. I'm not sure which ones--but you can bet, if the exercise looks advanced, IT IS. I have a few film clips shown here--the rest of them will be on The Doodle.

Overall, I was surprised how E "crouched" over sometimes while challenged. I don't see this at home often--then again, she's wearing her AFOs and she's not trying to walk on a balance beam, or an unstable surface, or moving without a handhold close by. I'll be very interested to see when and if this balance compensation/posture changes.