In September, Vivian had a neuropsychological evaluation. Basically, Jason and I had seen some unexpected changes in Vivian since her epilepsy diagnosis in January.
The differences were slight, except for the obvious change in energy/tiredness. She stopped reading long novels, and wasn't working on independent projects like she used to--projects that could last over a few days. Sometimes they were construction projects, sometimes painting, sometimes stories. They just seemed to vanish.
We weren't sure if it was a lull, or a real change, or if it was or was not related to epilepsy. I found out her condition qualified her for a visit to the neuropsychologist.
Vivian was evaluated over the course of two days. The eval consisted of a few questionnaires for me on her behalf, and a series of IQ/problem solving tasks. In short, Vivian is very intelligent, a good problem solver, highly motivated and enjoys being challenged. What was surprising was sometimes she misses "the big picture" type of question. While we'll never know whether or not this was always how Vivian was, or was going to be, Jason and I believe our observations of Vivian (types of books, projects, etc.) are different than they used to be. We've also seen her reading comprehension scores slide, even though she's on the higher level of scores related to her peers.
The neuropsych eval strongly hinted that this has been seen in epileptic patients. Normally this is not a side effect of medication, and was my suspicion, but rather a function of seizure effect/brain damage. Vivian's MRI shows no abnormalities. The evaluation gave us strategies to help Vivian as she grows older with things like reading comprehension, should we need them. In essence, this is a "baseline" for us, in case Vivian starts behaving differently or starts having trouble in school.
I'm glad Vivian was evaluated. I was disappointed that this was never recommended for Elena, so I asked the doctor about it. We had a good, long talk; basically, I noticed that when filling out the questionnaires for Vivian, I would have essentially recorded the opposite for Elena (self-sufficiency, social behavior, responsibilities, etc.).
She told me that currently, if a baby is born and determined to have a brain injury (as Elena was), their record is immediately flagged for a neuropsychology evaluation during her elementary school years. This can help a child who struggles with independence, personal responsibility, executive function, and social interaction--basically, all fields Elena (and many other kids) require assistance/help. It can provide strategies for her, and our family, to help achieve goals, manage expectations, and improve self-sufficiency. I wish I had known about this sooner.
I had Elena evaluated in November.
Our main question for the neuropsychologist was regarding our expectations for Elena, and if they were reasonable. They are not outrageous. She is intelligent, even though she struggles with some concepts, and is verbally talented. There is more to her stubbornness and lack of progress (in self-care) than just "being a teenager". It's a mix of "other', teenage angst, learned helplessness, and unwillingness to change (she is happy how things are, doesn't want to do more for herself--other people doing things for her suits her just fine, etc.).
The biggest message we got from the evaluation was that Elena is exhausted. Mentally and physically--the day exhausts her. She feels overwhelmed. By everything. She does not get excited about learning something new, it does not motivate her to do more with it--it just exhausts her. (She is not depressed.)
I thought that was how someone feels if the subject matter isn't interesting to them. I get that; if you don't like what's being taught at school or at home, it's a drag. To me, this would indicate nothing at school interests her--which I know isn't the case. And even though it's exhausting to her, she is doing much less than your average teenager--she has to be able to handle more, if she's ever to be a functional adult. Or functional teenager, for that matter.
The psychologist and I were a bit at odds, mostly b/c she was talking about how to encourage Elena through constant praise, very Kazdin-method type of lifestyle. I am convinced this doesn't work on a smart teenager--she can see right through shallow praise, and it backfires on us.
So, in short, we've been trying to encourage good behavior and try to be more patient. It basically just gave us more responsibilities than ever, and didn't help our home life much.
But, we eventually had a breakthrough. And that's where we are now.
Showing posts with label Vivian. Show all posts
Showing posts with label Vivian. Show all posts
Friday, December 7, 2018
Friday, August 17, 2018
Well, it's August.
Hi blogland. It's been pretty busy.
Instead of doing a massive recap from April, I'm going to update the April Chorus post. There's just too much to cover, so I'm going to start from now.
Elena
Things are going okay. School starts next week, and there's been issues related to her mobility. Mostly issues related to Elena doing work to preserve and protect her mobility. As in, extreme reluctance to do her exercises, work with me, stretch, etc. This has been true for most of this past year. And the results are what you'd expect; she's less mobile, has less endurance, and her crouch is worse.
Given the fact she does NOT want a school aide (too late, she absolutely needs one), and she desires to be more independent, we're trying again with a strict(er) workout/stretching/TherEx program. But we are starting from now, which is definitely different from last year.
There is still the chance of surgery. Her crouch is pretty bad. We will see if we can make improvements with the strengthening regimen.
She has some goals this year, besides being a good student and continuing her singing; one is making a workout app. I'll spend more time writing about this later, if it comes to fruition. Another one is to make a commitment to swimming throughout the year.
Vivian
Oh boy, where do I start here? In general, her condition changes approximately every 3 weeks. It sounds impossible, but it's true! Her major seizures have been controlled with medicine since approximately the end of May/beginning of June. We switched from generic Trileptal to Oxtellar (same dosage, same drug, but Oxtellar has a slow-release formula which greatly reduced her side effects) and she takes Onfi nightly. We are now down to less than 2 seizures per month.
As the seizures went down, her "activity" went up; she slowly started, than erupted, in jerks/convulsions at the beginning of sleep (rather than the previous style of seizures, which were in deep sleep) every single time she fell asleep. Sometimes they are only 2 minutes, sometimes these bursts last for 3 hours. Sometimes she hypersalivates, sometimes she hits herself (with her hands/arms, or whacks them against things, including floors) resulting in bruising. Sometimes she wakes up, sometimes I easily wake her, and other times I spend 2 minutes trying to wake her up.
She has had five EEGs this year.
This "activity", at the last EEG (which was at the end of July) did not indicate seizures (!). They have become MUCH worse since then (peaked in Early August) and now, with the idea of practicing what I call "quiet mind" before sleeping ("pretend you're in a field of flowers, and there's a herd of beautiful unicorns, and if you're very quiet one might come up to you and you can pet it") these intense jerks have nearly disappeared.
FOR NOW. Like I mentioned, things with her have been "on the move", and everything 2-3 weeks something is new. With school starting up next week, I expect another eruption of sorts. So we're managing, I guess. My next project involves starting a food diary and making notes related to hydration/weather/activity to see if I can find any significant relationships for triggers. I am keeping my expectations low; I don't think I'm going to find any.
Me
I am trying hard to keep things together. Jason works hard at his job, and he travels sometimes, and he's a deep sleeper. I am a light sleeper, and since Vivian is unpredictable, I've basically been on Vivian night watch. You can imagine how much uninterrupted sleep I get. We finally bought a Sami3 infrared monitor/alarm for Vivian; I'll report on that in about 2 months.
I'm trying to keep our family active and have the kids be kids; they were on the swim team, both went to camps, we went to the beach, played in the lake/river (check out the instagram feed in the sidebar!) and we just got back from New York. I'm just a little too tired to blog right now.
School starts next week; I have a few other meetings with E's team+teachers before it starts. Vivian has her neuropsychology exam next week (basically, it's an IQ test as a baseline; we've seen some decline since starting her meds. It's not much, but Jason and I both see it, even if her new teacher will probably think she's great). Right now it's a juggle between family, appointments, school prep, and the odd treat for Jason and myself (date night, bike/jog for me).
Instead of doing a massive recap from April, I'm going to update the April Chorus post. There's just too much to cover, so I'm going to start from now.
Elena
Things are going okay. School starts next week, and there's been issues related to her mobility. Mostly issues related to Elena doing work to preserve and protect her mobility. As in, extreme reluctance to do her exercises, work with me, stretch, etc. This has been true for most of this past year. And the results are what you'd expect; she's less mobile, has less endurance, and her crouch is worse.
Given the fact she does NOT want a school aide (too late, she absolutely needs one), and she desires to be more independent, we're trying again with a strict(er) workout/stretching/TherEx program. But we are starting from now, which is definitely different from last year.
There is still the chance of surgery. Her crouch is pretty bad. We will see if we can make improvements with the strengthening regimen.
She has some goals this year, besides being a good student and continuing her singing; one is making a workout app. I'll spend more time writing about this later, if it comes to fruition. Another one is to make a commitment to swimming throughout the year.
Vivian
Oh boy, where do I start here? In general, her condition changes approximately every 3 weeks. It sounds impossible, but it's true! Her major seizures have been controlled with medicine since approximately the end of May/beginning of June. We switched from generic Trileptal to Oxtellar (same dosage, same drug, but Oxtellar has a slow-release formula which greatly reduced her side effects) and she takes Onfi nightly. We are now down to less than 2 seizures per month.
As the seizures went down, her "activity" went up; she slowly started, than erupted, in jerks/convulsions at the beginning of sleep (rather than the previous style of seizures, which were in deep sleep) every single time she fell asleep. Sometimes they are only 2 minutes, sometimes these bursts last for 3 hours. Sometimes she hypersalivates, sometimes she hits herself (with her hands/arms, or whacks them against things, including floors) resulting in bruising. Sometimes she wakes up, sometimes I easily wake her, and other times I spend 2 minutes trying to wake her up.
She has had five EEGs this year.
This "activity", at the last EEG (which was at the end of July) did not indicate seizures (!). They have become MUCH worse since then (peaked in Early August) and now, with the idea of practicing what I call "quiet mind" before sleeping ("pretend you're in a field of flowers, and there's a herd of beautiful unicorns, and if you're very quiet one might come up to you and you can pet it") these intense jerks have nearly disappeared.
FOR NOW. Like I mentioned, things with her have been "on the move", and everything 2-3 weeks something is new. With school starting up next week, I expect another eruption of sorts. So we're managing, I guess. My next project involves starting a food diary and making notes related to hydration/weather/activity to see if I can find any significant relationships for triggers. I am keeping my expectations low; I don't think I'm going to find any.
Me
I am trying hard to keep things together. Jason works hard at his job, and he travels sometimes, and he's a deep sleeper. I am a light sleeper, and since Vivian is unpredictable, I've basically been on Vivian night watch. You can imagine how much uninterrupted sleep I get. We finally bought a Sami3 infrared monitor/alarm for Vivian; I'll report on that in about 2 months.
I'm trying to keep our family active and have the kids be kids; they were on the swim team, both went to camps, we went to the beach, played in the lake/river (check out the instagram feed in the sidebar!) and we just got back from New York. I'm just a little too tired to blog right now.
School starts next week; I have a few other meetings with E's team+teachers before it starts. Vivian has her neuropsychology exam next week (basically, it's an IQ test as a baseline; we've seen some decline since starting her meds. It's not much, but Jason and I both see it, even if her new teacher will probably think she's great). Right now it's a juggle between family, appointments, school prep, and the odd treat for Jason and myself (date night, bike/jog for me).
Sunday, January 21, 2018
Seizures
Seizures have become an almost nightly occurrence. Hypersalivation, face frozen, choking sounds, gurgling, waking from sleep, scared. Lasting anywhere from ten seconds to almost three minutes, sometimes more than once a night. It's scary, and complicated, and I'll write more about it later. Needless to say we've all been busy around here. I know a little about seizures, given my connection to the CP community. I've even seen a few, but they weren't like these.
And it's not what you think. It's not Elena.
It's Vivian.
This week she was diagnosed with focal epilepsy. More tests are coming, and more information.
Right now, we are managing okay. I've had some tough days here, a lot of sleepless nights, but today at least, I'm feeling like the bring-it-on, tough-as-nails, steeled-Mom that I know I can be. But if you know about seizure medication (she started Keppra, and we were given Diastat as emergency medication), or about seizures that have common elements to Vivian's (she is 9; no current known triggers after her first EEG; not expected to happen during the daytime) I'd love to know more about your experience if you'd like to share.
Wednesday, November 19, 2014
Why am I always behind? October round-up
Life has certainly been busy here. There is so much going on--school, drama, school volunteering (me), homework, therapy, doctors visits...and lots of fun. October was a beautiful, fun month--so here's some of the things we did!
Random acts of Fall
We've been working hard on our Fall Bucket list. Hot chocolate, stargazing, leaf raking/jumping, bike riding, making pumpkin treats, seeing friends...it's been great. E can spend more time outside now that the mosquitos are gone for the season.
Belvedere Plantation
When the girls were small, we'd bring the wagon and pull both. Last year, they both walked the whole time--amazing! This year, with Elena's crouch issues, I brought our double jogger stroller. Not a great fit...but neither is her wheelchair. If anyone has a good suggestion for a mobility solution when terrain is too challenging for a wheelchair, and can accommodate two small kids, please comment. Both E and Viv are close to 40 lbs, FYI.
Anyway, we had an awesome time as usual! Here are some of my favorite pictures!
We tried to do EVERYTHING this year--last year we ran out of steam for the corn maze. With the stroller, Elena and Vivian lasted longer. Elena had trouble in some of the same areas--keeping her feet on the tractor bike pedals, trying to get on the bouncing pillow. We had some successes too, like navigating deep hay and getting a running start on the zipline.
Both girls had a chance to fire the pumpkin cannon. Vivian was the first one to hit the target! She won a free bag of kettle corn! Elena was chosen to fire the BIG cannon (they pick one child per hour)--and hit the target too, winning us another bag! They were the only kids I saw there to win!
Vivian was chosen to be our guide for the corn maze. She definitely got us lost. Lucky for us, Elena thought it funny (instead of being too tired to see the humor) and we all had fun as evening came.
Halloween
I let the kids pick their costumes. Normally they pick ones that go together, and this year was no exception. Even though I am a classic Star Wars Nerd, I had no influence in their choices. Yes, they are homemade--Viv's is mostly cardboard and paint (she refused to model for me, so the headpiece didn't fit on quite right) and Elena's is recycled plastic and paint, put on like armor with painted duct tape. It worked out better than I expected! No headpiece on Elena--I figured it wouldn't work out with her glasses, and this took so long to put on I didn't have time to put gold makeup on her face and make her crutches black. No big deal.
I expected Elena to last about an hour (previous years it was 2 hours), and she surprised me. Again, 2 hours, and again, no carrying!
Vivian's Birthday!
Vivian had her 6th birthday (!) celebration! She chose a Fairy theme, so we made Fairy houses, played outside, and had a mini scavenger hunt. Everyone enjoyed good food and great company and lots of playtime.
Dear Vivian,
Happy 6th birthday to you, my little ball of entropy! You love fairies, legos, Barbie, and computer learning games. You love being in Kindergarten, even though you read like a second-grader! You are so helpful at home, and patient with the rest of the family (most of the time!). Your favorite colors are still purple, pink, and white (in that order) and you want to be a veterinarian when you grow up! You love baby animals, especially four-legged furry ones of all types. You can't wait to lose your first tooth, and are looking forward to the cold weather. I promise I will get you into a dance class as soon as I can!
We love you to pieces, sweetie darling!
Love,
Mommy, Daddy, and Elena
Random acts of Fall
We've been working hard on our Fall Bucket list. Hot chocolate, stargazing, leaf raking/jumping, bike riding, making pumpkin treats, seeing friends...it's been great. E can spend more time outside now that the mosquitos are gone for the season.
 |
| Leaf Pile Action! |
Belvedere Plantation
When the girls were small, we'd bring the wagon and pull both. Last year, they both walked the whole time--amazing! This year, with Elena's crouch issues, I brought our double jogger stroller. Not a great fit...but neither is her wheelchair. If anyone has a good suggestion for a mobility solution when terrain is too challenging for a wheelchair, and can accommodate two small kids, please comment. Both E and Viv are close to 40 lbs, FYI.
Anyway, we had an awesome time as usual! Here are some of my favorite pictures!
 |
| Vivian insisted on standing on a little hill |
 |
| Fam Sunflower picture! |
We tried to do EVERYTHING this year--last year we ran out of steam for the corn maze. With the stroller, Elena and Vivian lasted longer. Elena had trouble in some of the same areas--keeping her feet on the tractor bike pedals, trying to get on the bouncing pillow. We had some successes too, like navigating deep hay and getting a running start on the zipline.
 |
| Viv has a bit of a competitive streak |
 |
| E loves the zipline |
 |
| Ready Aim FIRE! |
Both girls had a chance to fire the pumpkin cannon. Vivian was the first one to hit the target! She won a free bag of kettle corn! Elena was chosen to fire the BIG cannon (they pick one child per hour)--and hit the target too, winning us another bag! They were the only kids I saw there to win!
 |
| Falling off the ropeswing into the hay |
Vivian was chosen to be our guide for the corn maze. She definitely got us lost. Lucky for us, Elena thought it funny (instead of being too tired to see the humor) and we all had fun as evening came.
 |
| Where's Vivian? |
 |
| My Pumpkins |
Halloween
I let the kids pick their costumes. Normally they pick ones that go together, and this year was no exception. Even though I am a classic Star Wars Nerd, I had no influence in their choices. Yes, they are homemade--Viv's is mostly cardboard and paint (she refused to model for me, so the headpiece didn't fit on quite right) and Elena's is recycled plastic and paint, put on like armor with painted duct tape. It worked out better than I expected! No headpiece on Elena--I figured it wouldn't work out with her glasses, and this took so long to put on I didn't have time to put gold makeup on her face and make her crutches black. No big deal.
 |
| E is C-3PO and Viv is R2D2 |
I expected Elena to last about an hour (previous years it was 2 hours), and she surprised me. Again, 2 hours, and again, no carrying!
Vivian's Birthday!
Vivian had her 6th birthday (!) celebration! She chose a Fairy theme, so we made Fairy houses, played outside, and had a mini scavenger hunt. Everyone enjoyed good food and great company and lots of playtime.
Dear Vivian,
Happy 6th birthday to you, my little ball of entropy! You love fairies, legos, Barbie, and computer learning games. You love being in Kindergarten, even though you read like a second-grader! You are so helpful at home, and patient with the rest of the family (most of the time!). Your favorite colors are still purple, pink, and white (in that order) and you want to be a veterinarian when you grow up! You love baby animals, especially four-legged furry ones of all types. You can't wait to lose your first tooth, and are looking forward to the cold weather. I promise I will get you into a dance class as soon as I can!
We love you to pieces, sweetie darling!
Love,
Mommy, Daddy, and Elena
Friday, December 6, 2013
Hodgepodge update, again
Hot and Cold
The weather has been just starting to match the season. I decided to take the girls out a month (?) ago (this is a catchall update) before the leaves fell off the trees--it was beautiful out, but freezing!!
The New Playroom
When Elena was learning to walk, she fell "like a tree" all the time. We decided we needed a "crash room"--so we emptied our dining room, bought the thickest carpet we could find (and put the thickest pad under it), removed any furniture, padded any and all "corners", and gated the sides. That was our arena before Elena could move about the house safely (roughly, two years). Now, our entire main floor is littered with kid stuff--Elena has trouble carrying lots of things, so we never stressed cleaning up after herself--and we didn't really stress it with Vivian either. Now that Elena can navigate the entire house on her own, I decided to move the playroom to the basement and reclaim our dining room (eventually).
I've been working for the last month on the new playroom--cleaning, painting, putting together furniture, etc. I still need two chairs for the table. Pictures when they arrive!
Rainy Indoor Day (first days as a stay-at-home Mom!)
It was such a yucky day...so we made the most of it, gross-motor style. Here are some highlights of our obstacle courses (Vivian not shown).
More Riding at Fairhunt, with Bonus Vivian!
Elena's riding is improving. Some of the best cues Susan has given Elena have been referring to her pelvis as "a bowl" and how she doesn't want to "tip the bowl" (less lordotic posture). Elena is starting to understand what a pelvic tilt means, and this is one (out of two) exercises that maintain that awareness. She is also posting better. Starlight a.k.a. "Teacup" is a good pony, but she is very old and will retire soon.
Roller Skating!
The local recreation center in town offers free roller skating every Friday night and Sunday evening. It's wonderful--the staff are so friendly, encouraging, and nice; the other kids (honestly, all of them) have been super nice. It's full of people falling, not just Elena, which is a refreshing change.
Granted, Elena has a harder time on skates than anyone else I see there. Still, she enjoys it, and it's a new and different balance challenge--and that's always good, in my opinion. Elena skates best with two adults (one on each side, normally Jason and I) or one adult if she's doing really well. She also wears a harness I bought a long time ago (thinking it might help with skiing or bike riding) that has a handle near her back.
We have three goals when E is skating: 1) for her to keep her head up (mainly to keep her butt in line as much as possible), 2) to try to put all four wheels on her right foot on the floor (this is rarely successful) and 3) to keep her feet moving (otherwise she stays on her left foot too long). I think she is doing beautifully, and she improves every time. Elena is discouraged when she sees Vivian, now skating by herself; we try to be happy for everyone, and just have fun out there.
We had a really great experience when a little gem of a girl Elena's age skated right up to her as I was lacing up her skates, and she introduced herself and asked about Elena's braces. Then she said she doesn't like wearing her brace either. I didn't see one; she said she wears hers all the time when she is not exercising. I think she was talking about a back brace for scoliosis (I didn't get that far in the conversation, as she and Elena were talking). It was nice for E to realize other people wear braces, even if it isn't obvious.
The weather has been just starting to match the season. I decided to take the girls out a month (?) ago (this is a catchall update) before the leaves fell off the trees--it was beautiful out, but freezing!!
 |
| Beautiful Fall |
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| Running |
 |
 |
| Hot Cocoa |
When Elena was learning to walk, she fell "like a tree" all the time. We decided we needed a "crash room"--so we emptied our dining room, bought the thickest carpet we could find (and put the thickest pad under it), removed any furniture, padded any and all "corners", and gated the sides. That was our arena before Elena could move about the house safely (roughly, two years). Now, our entire main floor is littered with kid stuff--Elena has trouble carrying lots of things, so we never stressed cleaning up after herself--and we didn't really stress it with Vivian either. Now that Elena can navigate the entire house on her own, I decided to move the playroom to the basement and reclaim our dining room (eventually).
Rainy Indoor Day (first days as a stay-at-home Mom!)
It was such a yucky day...so we made the most of it, gross-motor style. Here are some highlights of our obstacle courses (Vivian not shown).
More Riding at Fairhunt, with Bonus Vivian!
Elena's riding is improving. Some of the best cues Susan has given Elena have been referring to her pelvis as "a bowl" and how she doesn't want to "tip the bowl" (less lordotic posture). Elena is starting to understand what a pelvic tilt means, and this is one (out of two) exercises that maintain that awareness. She is also posting better. Starlight a.k.a. "Teacup" is a good pony, but she is very old and will retire soon.
 |
| Just like her big sister |
Roller Skating!
The local recreation center in town offers free roller skating every Friday night and Sunday evening. It's wonderful--the staff are so friendly, encouraging, and nice; the other kids (honestly, all of them) have been super nice. It's full of people falling, not just Elena, which is a refreshing change.
Granted, Elena has a harder time on skates than anyone else I see there. Still, she enjoys it, and it's a new and different balance challenge--and that's always good, in my opinion. Elena skates best with two adults (one on each side, normally Jason and I) or one adult if she's doing really well. She also wears a harness I bought a long time ago (thinking it might help with skiing or bike riding) that has a handle near her back.
We have three goals when E is skating: 1) for her to keep her head up (mainly to keep her butt in line as much as possible), 2) to try to put all four wheels on her right foot on the floor (this is rarely successful) and 3) to keep her feet moving (otherwise she stays on her left foot too long). I think she is doing beautifully, and she improves every time. Elena is discouraged when she sees Vivian, now skating by herself; we try to be happy for everyone, and just have fun out there.
We had a really great experience when a little gem of a girl Elena's age skated right up to her as I was lacing up her skates, and she introduced herself and asked about Elena's braces. Then she said she doesn't like wearing her brace either. I didn't see one; she said she wears hers all the time when she is not exercising. I think she was talking about a back brace for scoliosis (I didn't get that far in the conversation, as she and Elena were talking). It was nice for E to realize other people wear braces, even if it isn't obvious.
Tuesday, November 5, 2013
Vivian's Witchy Fifth Birthday
Amidst all the Halloween drama, I was also planning Vivian's birthday party. She chose her theme as "Witchy Party", so we decided on a dress-as-witchy-as-possible party, with some songs, broom games, and making a Witch's Brew!
***more pictures will be added as I get permission from parents to post***
We started off with the kids learning part of a song--Witches' Brew by Hap Palmer. It was a great way to regroup the kids (using the chant from the song) and it kept the theme going.
I had decided to make a huge cauldron (out of cardboard, duct tape, black paint, a few trash bags for the liner--and a good amount of dry ice!) and have the kids add ingredients as we made the brew. I had tubes containing ingredients (some same, some different) in a three decorated boxes. I divided the kids into three groups and had them search their tubes to find the next ingredient--the brave ones stepped up to add it to the pot.
All but a few ingredients were common kitchen goods, with different names. "Skin from a witch's nose" (bran flakes), "eye of newt" (cous cous with a black dot painted on each one), "crushed bones" (flour), "clay from the lost red temple" (crushed up red chewable vitamin), etc. There was also purple pixie dust (glitter) and a fallen rainbow (nontoxic crayon shavings). My personal favorite was "a dash of invisibility" (an empty tube). The kids were confused.
"What does it look like?" one child asked.
"I don't know, it's invisible!" I answered.
Vivian finally found an empty tube. "Is this it?"
I nodded.
"How much do I add?"
"Well, " I told her, "you don't want to add to much!"
Her action was priceless. She cautiously approached the cauldron, and tipped it just a smidge. I told her to put a little more in, and she shook it a bit. The kids were spellbound.
After all the ingredients were added, we danced around the cauldron singing our silly song. Then I removed the top from the secret pot inside (containing mostly Grape Fanta--some of the hot water and frost gatorade did creep in the pot, as well as a few crayon shavings) and ladled out some to taste. No one was interested in trying any with me, until I told them how delicious it was. Then everyone had some (even some parents). I warned the kids to take it easy, as the brew might have too much invisibility in it.
Then the pizza arrived, and the kids played around the yard. We sang to Vivian, and had birthday cupcakes. I asked the kids what power they enjoyed most from the Brew, and it ranged from "super speed" to "invisibility" to "sparkle power" to my own, "extreme tiredness".
Huge thanks to Vivian's friends, Nana and PopPop, and especially Adam at asmphotography for the great pictures (you can find him and more of his work here) for coming out to celebrate Vivian!
My Dearest Vivian,
When you woke up the morning of your 5th birthday, you jumped in to show me how short your pajama sleeves had become overnight because you "turned into a five-year old". You are inquisitive, hilarious, expressive, and emotional. You're our little ball of entropy. You love purple, dancing, being loud, and turning things into a competition--even though you argue it isn't. You love, support, and look up to your big sister. You love to catch and throw kisses, read, cuddle, and do our Fancy Five handshake.
I joke that I want you to "stop growing". I'd be lying if I wish, only a little, this wasn't true. If I could put this time in a bottle and savor it forever, I would. You are a joy.
We love you to pieces, always and in all ways,
Mommy, Daddy, and Elena
***more pictures will be added as I get permission from parents to post***
We started off with the kids learning part of a song--Witches' Brew by Hap Palmer. It was a great way to regroup the kids (using the chant from the song) and it kept the theme going.
 |
| Broom sweep game |
I had decided to make a huge cauldron (out of cardboard, duct tape, black paint, a few trash bags for the liner--and a good amount of dry ice!) and have the kids add ingredients as we made the brew. I had tubes containing ingredients (some same, some different) in a three decorated boxes. I divided the kids into three groups and had them search their tubes to find the next ingredient--the brave ones stepped up to add it to the pot.
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| I help Elena add "eye of newt" |
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| Adding "crushed bones" |
All but a few ingredients were common kitchen goods, with different names. "Skin from a witch's nose" (bran flakes), "eye of newt" (cous cous with a black dot painted on each one), "crushed bones" (flour), "clay from the lost red temple" (crushed up red chewable vitamin), etc. There was also purple pixie dust (glitter) and a fallen rainbow (nontoxic crayon shavings). My personal favorite was "a dash of invisibility" (an empty tube). The kids were confused.
"What does it look like?" one child asked.
"I don't know, it's invisible!" I answered.
Vivian finally found an empty tube. "Is this it?"
I nodded.
"How much do I add?"
"Well, " I told her, "you don't want to add to much!"
Her action was priceless. She cautiously approached the cauldron, and tipped it just a smidge. I told her to put a little more in, and she shook it a bit. The kids were spellbound.
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| Vivian making sure the "Ghost Juice" was "rat-infused" |
After all the ingredients were added, we danced around the cauldron singing our silly song. Then I removed the top from the secret pot inside (containing mostly Grape Fanta--some of the hot water and frost gatorade did creep in the pot, as well as a few crayon shavings) and ladled out some to taste. No one was interested in trying any with me, until I told them how delicious it was. Then everyone had some (even some parents). I warned the kids to take it easy, as the brew might have too much invisibility in it.
Then the pizza arrived, and the kids played around the yard. We sang to Vivian, and had birthday cupcakes. I asked the kids what power they enjoyed most from the Brew, and it ranged from "super speed" to "invisibility" to "sparkle power" to my own, "extreme tiredness".
Huge thanks to Vivian's friends, Nana and PopPop, and especially Adam at asmphotography for the great pictures (you can find him and more of his work here) for coming out to celebrate Vivian!
My Dearest Vivian,
When you woke up the morning of your 5th birthday, you jumped in to show me how short your pajama sleeves had become overnight because you "turned into a five-year old". You are inquisitive, hilarious, expressive, and emotional. You're our little ball of entropy. You love purple, dancing, being loud, and turning things into a competition--even though you argue it isn't. You love, support, and look up to your big sister. You love to catch and throw kisses, read, cuddle, and do our Fancy Five handshake.
I joke that I want you to "stop growing". I'd be lying if I wish, only a little, this wasn't true. If I could put this time in a bottle and savor it forever, I would. You are a joy.
We love you to pieces, always and in all ways,
Mommy, Daddy, and Elena
Saturday, May 25, 2013
Flower Girls
Yesterday, my brother got married!
Elena and Vivian were asked to be flower girls--they were SO EXCITED! A few months ago Andy and Melissa brought down their flower girl dresses--Vivian has asked almost every day if she could wear it to school. They could not wait for the wedding!
I had a few concerns. If you have a child with CP like Elena, you know what I mean. Will I find appropriate shoes that will stay on? Will she be able to carry a flower basket? Will she fall? What is the terrain like (is there a fabric runner, or is it on grass)? Will she need to stand for a long while? My most immediate issue was what will I do with her crutches? As you can see, they are hot pink. Not traditional wedding appropriate.
I brainstormed for a long time in my head. I settled on using ribbon. I figured it wouldn't fray, and I'd twist it around or make a "tube" with it and hand sew it. I settled on wired wide white ribbon, just to see if it would take shape. It did, sort of. But it was thin, so the hot pink still showed through. I ended up using double-sided hem tape--LOTS of it. First I'd tape the crutches, then I twisted the first layer of ribbon around them. I put on more tape, and wrapped another layer. The crutches sort of looked mummified. I then sewed double-ply fabric flower trim around the crutch joints (where the ribbon wouldn't take), wrecking a whole lot of needles in the process because they ended up being coated with the layers of hem tape underneath. Still, overall, I was pleased with the look--with the exception of the dirty arm cuffs, but I forgot all about planning for that. Now all I needed was for her to keep these white crutches CLEAN for two days (day of the rehearsal and the wedding). WHICH SHE DIDN'T, b/c she got them all dirty at recess--she left them on the ground and kids (including her) walked on them while catching cicadas. A little laundry detergent and water saved the day (WHEW).
Then we all got ready for the ceremony--major excitement on Elena's part. Vivian was tired (I knew this might happen), so we packed a few snacks just in case.
I decided we'd take off the girls' sweaters (not part of the flower girl uniform) and they'd have to be cold for a few minutes. They ended up putting on their sweaters during the ceremony. No biggie.
At the reception, my camera ran out of battery life. The girls (especially Vivian) worked the room and talked to family and friends. They both loved the photo booth and seeing everyone all dressed up! I was hoping that they would last until the dancing started. I got one dance with Elena--she was extremely tired and I held her. Vivian was already asleep upstairs at that point. A few moments after our dance, Elena went up to join her. It was a very special day--but by that point, both girls were pretty exhausted. Jason put them to bed while I got to catch up with family and friends, which was great fun.
Congratulations Andy and Melissa! Thank you so much for allowing us to be a part of your big day!
I had a few concerns. If you have a child with CP like Elena, you know what I mean. Will I find appropriate shoes that will stay on? Will she be able to carry a flower basket? Will she fall? What is the terrain like (is there a fabric runner, or is it on grass)? Will she need to stand for a long while? My most immediate issue was what will I do with her crutches? As you can see, they are hot pink. Not traditional wedding appropriate.
I brainstormed for a long time in my head. I settled on using ribbon. I figured it wouldn't fray, and I'd twist it around or make a "tube" with it and hand sew it. I settled on wired wide white ribbon, just to see if it would take shape. It did, sort of. But it was thin, so the hot pink still showed through. I ended up using double-sided hem tape--LOTS of it. First I'd tape the crutches, then I twisted the first layer of ribbon around them. I put on more tape, and wrapped another layer. The crutches sort of looked mummified. I then sewed double-ply fabric flower trim around the crutch joints (where the ribbon wouldn't take), wrecking a whole lot of needles in the process because they ended up being coated with the layers of hem tape underneath. Still, overall, I was pleased with the look--with the exception of the dirty arm cuffs, but I forgot all about planning for that. Now all I needed was for her to keep these white crutches CLEAN for two days (day of the rehearsal and the wedding). WHICH SHE DIDN'T, b/c she got them all dirty at recess--she left them on the ground and kids (including her) walked on them while catching cicadas. A little laundry detergent and water saved the day (WHEW).
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| you get the idea |
As for shoes, I wanted a thick-soled white mary jane flat that had LOTS of buckles and/or straps to try to keep the shoe over her sure step AFOs. That didn't really exist, so I settled on a very low heel (since she was on her toes anyway, her gait didn't look too bad) and one strong (but thin) strap. There wasn't much to choose from. I considered trying to get her orthotist to alter the heel of her shoes (since she has a leg length discrepancy, and we do this for her regular shoes) but I didn't have time. Elena's foot came out of her shoe a few times, but after we strapped it REALLY tight (it didn't hurt her foot b/c of her AFO) it seemed to be set.
The terrain was outside (gulp). The procession was down an old, uneven, sometimes crumbling brick walkway (double gulp). It was relatively flat, but problematic for Elena if she wasn't paying attention. She knew she was supposed to smile and look forward as much as possible, while staying safe--she knew the walkway could be trouble.
Neither Elena nor Vivian carried a flower basket (we had been practicing carrying a basket on her crutch and using the hand to throw things out of it). Melissa decided the girls would wear flower crowns on their heads instead of throwing petals--I was actually quite happy about that, given the brick walkway.
Everything seemed in order. The rehearsal went well, but it was hot--SUPER HOT AND HUMID. E seemed comfortable with the flower girl duties, but not the heat. Then it rained. Then it got cold.
REALLY COLD. It was 60 degrees and WINDY--compared to they day before, it was downright frigid. After breakfast that morning, we took the girls to Gravelly Point--a great place to get close to airplanes as they take off from the airport. It was pretty cool.
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| Fast and loud |
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| Three airplanes |
Then we all got ready for the ceremony--major excitement on Elena's part. Vivian was tired (I knew this might happen), so we packed a few snacks just in case.
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| Me and my girls |
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| Dressed up beauties |
I decided we'd take off the girls' sweaters (not part of the flower girl uniform) and they'd have to be cold for a few minutes. They ended up putting on their sweaters during the ceremony. No biggie.
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| Waiting patiently--this room was warm |
The photographers requested no cameras at the ceremony--which makes sense, no one wants their wedding pictures to have photos of all their guests taking pictures with their phones! So I don't have shots of the actual ceremony. If I get any digital copies, I'll put them up here. Elena was AWESOME. Super great smile, walked slowly, didn't fall, and walked nice and tall. Just perfect! Vivian walked a little fast--but she was totally adorable, especially when she wanted to stand with the bridesmaids (she did, until she got too cold and she put on her sweater). Needless to say, the ceremony was beautiful, and I couldn't be happier for my brother and Melissa. They are a perfect match.
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| Heading to the reception! |
At the reception, my camera ran out of battery life. The girls (especially Vivian) worked the room and talked to family and friends. They both loved the photo booth and seeing everyone all dressed up! I was hoping that they would last until the dancing started. I got one dance with Elena--she was extremely tired and I held her. Vivian was already asleep upstairs at that point. A few moments after our dance, Elena went up to join her. It was a very special day--but by that point, both girls were pretty exhausted. Jason put them to bed while I got to catch up with family and friends, which was great fun.
Congratulations Andy and Melissa! Thank you so much for allowing us to be a part of your big day!
Monday, March 18, 2013
Tuesday, January 1, 2013
Biking at the Track
We took the girls out to a track to test out their bikes. Elena got a new bike for Christmas; Vivian is trying out the one Elena used to use.
These videos are taken from the end of our almost 1-hr session; in the beginning, E was frustrated because she kept losing her footing on the pedals. (Biking without her feet strapped to the pedals is relatively new for her).
It's not evident from these videos but Vivian also had trouble with the bike at first. Both Viv and E are quick learners--but obviously Viv has an easier time with this sort of thing. By the end of of our time, Viv was biking well (but pretty tired, she said her legs hurt) and E had made significant progress. I think it will be much more difficult for Elena to feel where her feet are while wearing braces...we are considering putting adult-sized pedals on her kid-sized bike.
These videos are taken from the end of our almost 1-hr session; in the beginning, E was frustrated because she kept losing her footing on the pedals. (Biking without her feet strapped to the pedals is relatively new for her).
It's not evident from these videos but Vivian also had trouble with the bike at first. Both Viv and E are quick learners--but obviously Viv has an easier time with this sort of thing. By the end of of our time, Viv was biking well (but pretty tired, she said her legs hurt) and E had made significant progress. I think it will be much more difficult for Elena to feel where her feet are while wearing braces...we are considering putting adult-sized pedals on her kid-sized bike.
Sunday, December 23, 2012
Ice Skating
Yesterday we celebrated the holiday season with some ice skating with friends!
We were so excited! Jason and I figured that it would be a lot like the time we took the girls last year--a lot of hand-holding, and two parents with sore backs. We knew they would have buckets for kids at this rink. Viv had never tried one, but Elena had. It was terribly unsuccessful, b/c she was on her toes so much in her skates while leaning on a bucket that the skate's toe picks kept her from going anywhere. Still, the kids had fun.
So we had high hopes this year. They started to fade a bit when Elena got on the ice and had a terrible time with her footing--sliding everywhere (of course! it's ice!) while her peers managed to stay upright (at least part of the time). Elena had a very hard time being upright, no matter how many hands/arms/torso we held (it was a little better with one adult holding one hand on each side). She started to get a little frustrated.
I put her on the buckets and pushed her around for a while. In the beginning, every child was just focused on staying upright they couldn't notice what was going on around them. Elena relaxed when she noticed she wasn't the only one having a difficult time skating. I also had her see how other kids were using the buckets--their feet further away from the bucket, with their legs pretty straight and them bending at the waist to lean on the buckets. E was ready to try again.
And again and again and again.
Bonus Vivian: Viv tries to help her classmate T after he falls. Precious!!!
Everyone LOVED skating--she got to enjoy time with her friends, neighbors, classmates--as did Vivian, who is apparently a natural on skates. It was a great time, with wonderful people, to celebrate the season, and we're so happy we got the chance to enjoy skating with friends.
We were so excited! Jason and I figured that it would be a lot like the time we took the girls last year--a lot of hand-holding, and two parents with sore backs. We knew they would have buckets for kids at this rink. Viv had never tried one, but Elena had. It was terribly unsuccessful, b/c she was on her toes so much in her skates while leaning on a bucket that the skate's toe picks kept her from going anywhere. Still, the kids had fun.
So we had high hopes this year. They started to fade a bit when Elena got on the ice and had a terrible time with her footing--sliding everywhere (of course! it's ice!) while her peers managed to stay upright (at least part of the time). Elena had a very hard time being upright, no matter how many hands/arms/torso we held (it was a little better with one adult holding one hand on each side). She started to get a little frustrated.
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| The Wall was tough |
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| Try Again |
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| Ride and Observe |
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| Viv is enjoying herself |
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| Dad Lets Go |
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| YES YOU CAN |
Bonus Vivian: Viv tries to help her classmate T after he falls. Precious!!!
Sunday, December 2, 2012
Thanksgiving Recap
WOW I've been kind of horrible at putting my posts up on time, sorry!
We had a whirlwind Thanksgiving, mostly b/c Jason and I had to work on Wednesday. We packed the girls up and drove them to Grandma and Grandpa's house Wednesday evening. We had special plans for Thanksgiving Day...
Exercise (PICTURES WILL BE UP AS SOON AS I PONY UP $$ to GOOGLE FOR MORE SPACE)
We took the kids to the Fantasy Playground. We've been here many times before, and we love to come back--not only b/c the playground is cool, but it's SO GREAT to see the progress both E and Viv have made as they've grown. Elena did the ENTIRE playground herself, except for a few very large steps (they are giant). Including this "burma bridge"--Jason was there to spot E, but he didn't touch her OR the ropes!
Then we came home to have a very special meal with E and Viv's soon-to-be new Aunt Melissa (my soon-to-be sister-in-law) and her family. It was wonderful, and the kids looked so cute in their outfits (I bet I don't even have a picture!). Even though our trip was short, it was a great family time. We ended up driving home Thanksgiving night...
Because the girls were invited to be a part of our local Thanksgiving Parade!
E and Viv (and I) rode on the Camp Holiday Trails float in the parade. It was COLD, but the kids were very excited to be on the float and do their job--do their best waves! We heard lots of voices yelling "HEY ELENA!!" in the crowd as we went by (and a few shout-outs for Vivian, too). They had a great time, and then we went home to warm up and begin our Christmas decorating--the first part being watching The Nutcracker (Baryshnikov version). WE LOVE IT!
We had a whirlwind Thanksgiving, mostly b/c Jason and I had to work on Wednesday. We packed the girls up and drove them to Grandma and Grandpa's house Wednesday evening. We had special plans for Thanksgiving Day...
Exercise (PICTURES WILL BE UP AS SOON AS I PONY UP $$ to GOOGLE FOR MORE SPACE)
We took the kids to the Fantasy Playground. We've been here many times before, and we love to come back--not only b/c the playground is cool, but it's SO GREAT to see the progress both E and Viv have made as they've grown. Elena did the ENTIRE playground herself, except for a few very large steps (they are giant). Including this "burma bridge"--Jason was there to spot E, but he didn't touch her OR the ropes!
Then we came home to have a very special meal with E and Viv's soon-to-be new Aunt Melissa (my soon-to-be sister-in-law) and her family. It was wonderful, and the kids looked so cute in their outfits (I bet I don't even have a picture!). Even though our trip was short, it was a great family time. We ended up driving home Thanksgiving night...
Because the girls were invited to be a part of our local Thanksgiving Parade!
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| it was cold |
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| lots of glare, sorry |
E and Viv (and I) rode on the Camp Holiday Trails float in the parade. It was COLD, but the kids were very excited to be on the float and do their job--do their best waves! We heard lots of voices yelling "HEY ELENA!!" in the crowd as we went by (and a few shout-outs for Vivian, too). They had a great time, and then we went home to warm up and begin our Christmas decorating--the first part being watching The Nutcracker (Baryshnikov version). WE LOVE IT!
Saturday, November 10, 2012
My Very Busy Vivian
HAPPY FOURTH BIRTHDAY TO YOU, my little ball of entropy!
For your 4th birthday party, you chose the theme "Busytown" (Richard Scarry's Busytown). We invited your friends and classmates (you are in preschool now!!) and everyone had a great time with the vehicles Mommy made, and playing in our little busy "town". Thanks to Grandma and Grandpa for helping, and taking so many great pictures! (It was hard for me to choose just a few...)
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| Viv driving the Apple car |
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| Stop Apple! |
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| E's Lowly hat |
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| Viv fills up J's ride |
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| E in the convertible |
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| Z in the Pickle car |
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| E speeds down the road |
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| E in the convertible |
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| Z peering through the Apple car |
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| A and Viv find the leaf pile |
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| Happy Bday Girl |
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| A and J |
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| J drives the Banana car |
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| S working the local store |
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| E scooted all by herself |
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| Viv convertible |
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| Z liked to talk and drive |
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| Too young to drive |
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| E works the "gas pump" |
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| M liked the animal noses |
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| O bikes |
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| M in the Delivery Truck |
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| S drives the Tow Truck |
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| Z in the Race Car |
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| "Moms at the shop" |
The Busy Birthday in action!
Thanks to all our friends who came to celebrate Viv's birthday with us! We had such a great time!
We celebrated with a little cupcake on your actual birthday. Your birthday wish was that Mommy and Daddy would always be there to take care of you. OF COURSE. :)
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| Making her wish |
We love you to pieces,
Mommy, Daddy, and Elena
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