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!