Friday, May 2, 2014

May is Stroke Awareness Month * PT *

May is Stroke Awareness Month, and that includes Pediatric Stoke Awareness also.  So, although I talk about Coraline's diagnosis and progress all the time in the blog, this month I'll have some posts specifically dedicated to Hemiplegia and Stroke facts, awareness, and related things.

If you read back in my blog, you'll read about how we suspected there was a problem, the tests we went through, the diagnosis, etc.  But I haven't talked much about treatment.

Coraline has been in Physical Therapy since she was 7 months old (off and on) and steadily since she was 13 months.  She has therapies 4 times a week - twice a week is PT, and twice a week is "special instruction" which deals with speech therapy and fine motor skills (occupational therapy.)    During the sessions we play and make it fun for her, but we also push her beyond her comfort zone, challenge her balance, and encourage her to do things that aren't easy or always comfortable for her.  And it's hard work for anyone, but especially for a one year old.  But she mostly endures it with a smile.



We work with her on doing two handed activities.  Today she worked on putting "coins" in a piggy bank with both hands.  If you just let her be, she'll pick up the first coin with her "good" (left) hand, then she'll pass it to her "affected" (we don't say "bad") (right) hand as a "holder hand", and she'll go pick up a second item with her good hand.  Then she'll put it in the piggy bank with the good hand, then transfer the second one from affected to the good hand, and put in the second one.  Her PT tries to hold the good hand after she puts the first coin in the bank, to force her to put the second coin in with her affected hand.  Sometimes, she clumsily can/will do it.  Sometimes she'll fuss and pull her hand back - and transfer and do it the way she prefers.  (She can be stubborn.)   We do activities like this with her standing at a bench/table and sometimes put the coins on a table in front of her, and the bank on a table behind her - so she has to grab off one surface, then pivot and change her weight to the other foot, to put it on the other table.  Sometimes we do it on a wobbly surface (like the red "peanut" therapy ball) so she can't lean on it as much and needs to rely more on her own sense of balance.


Today she also got to sit on a teeny tiny ride on tricycle while doing some of her activites.  The PT rolled the trike back and forth and Coraline had to use her core muscles to stay upright and not slide off the seat.  The therapist also stomps her affected foot on the floor to send sensations up the leg and to the brain - to remind her that the leg is there, to increase sensation, and to help rebuild neuro-passageways from the brain to the affected leg.


Sometimes she also gets to sit on the therapy swing, which often she is afraid of.  It's funny, because she loves the swings at the park, but not this one.  I guess because she's unsupported and has to use her core muscles to stay on.  Today she fell off, but luckily it's only 4 inches off the ground and there's a super squishy mat underneath.


The last thing she did at PT today was walk the halls of the school with the "shopping cart".  It's full of weights, so she actually has to PUSH to make it roll, but it also keeps it from going to fast and dragging her down the hall!  We usually use the shopping cart to walk from the PT room to the front door when the session is over.



I'm extremely proud of all the progress Coraline has made and that week after week, she returns to the therapy room and tries her best, even when we're putting her outside her comfort zone.   She's a tough little cookie! 

 I'm extremely glad that we caught her hemiplegia when we did, because her therapies have made a really big difference in her recovery.  According to CHASA's fact sheet, hand preference before the age of three is not normal, and if you see that your baby only uses one hand, this should be brought to the attention of your pediatrician.  *The more you know*

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Tuesday, April 29, 2014

What We've Been Up To (Updates, Feb thru April)

It's been a super long time!  And when it gets to be too long between blog posts, it feels overwhelming to catch up... and so I put it off even more, then more time goes by, and it feels more overwhelming, and it becomes a cycle!  So... I'm just going to catch up in bullet points and photos!  (Photos are the best part anyway!)

So here's what's new (and the same):

* On March 4, 2014 Lily lost her first tooth!  (And a couple of weeks later, her second tooth came out also, the one right next to it.)  Her permanent teeth had already grown in behind the baby teeth (the dentist called it shark teeth!), so when the baby teeth fell out, the new ones were already there!  She now has her third wiggly tooth, a top one.  I can't believe my baby is already loosing teeth!
Her first tooth was wiggly for a month or more, but she was too scared to play with it.  For a week, it was hanging on by a thread!  I picked her up from school one day, and her TA told me that she cried hysterically in the middle of class but couldn't tell anybody why.  When she got in the car, I asked her and she said she didn't know.  I asked her if it was about her tooth, and she told me her tooth fell out in the middle of class, but she was too embarrassed to tell anyone - then she looked at it and it had blood on it (she's phobic about blood) and so she started crying.  I asked her where the tooth was (I was terrified she had lost it), and she reached into her blue cardigan pocket and pulled out the tiny tooth!  I can't believe she didn't lose it all day!  She quickly got over the shock, then was really excited for the tooth fairy to come.


*  In February, my last remaining grandparent passed away.  But it meant that we got a bonus visit from my brother, his wife, and my adorable niece!  We had just seen them in December (and it was the first time I met my niece), so we didn't expect to see them so soon!  So here are all the kids, with me and my brother and my dad.  (Lily age 5, Coraline age 14 months, and Kaila age 9 months.)


* For Valentine's Day, we stayed in a hotel and had dinner at my favorite Italian restaurant.  I took Lily swimming in the hotel (always a favorite of hers) and the next day, we took Lily bowling for what she believes is the first time (though I tried to convince her she'd been bowling 2 times before, she was too little to remember.)  Lily LOVED bowling, and we wound up going AGAIN the next week with some friends.

For school, we made "cookie Valentines" (again) - each kid got two pink-sugar-glitter sugar cookies, that we individually wrapped and made handmade tags for.  Lily was super excited to also wear her new hot pink rain boots on Valentine's Day.  School almost got cancelled due to snow that day, which had Mommy nearly in tears (after we spent 12 hours making cookie-Valentines), but luckily she got to go to school and hand them out!

Cookie Valentines, 2014

Bonus cute Coraline photo from Valentine's Day weekend.
*  In March we went to the Montauk St. Patrick's Day parade (we had to skip last year because Coraline was too little and it was too cold).  Lily had a great time, at least for the first 80% of it, but towards the end she got too cold to really enjoy it.  We found a fox hat in a store in Montauk (with built in mittens) and she fell in love with it, and so we had to get it for her... which resulted in me singing "what did the fox say?" for the remainder of the day.
Me & Lily at the parade
*  The first weekend of April, to celebrate Missy's birthday, we spent the day in the city.  We met up with Lily's cousin Violet and took the girls to the Museum of Natural History (Lily's first visit) to see the dinosaur bones!  Lily had a super awesome time and is still talking about it!  She can't wait to go back to the museum and see other things (we only did the dinosaur rooms and the giant whale room, because we didn't have enough time to do everything.)

Violet and Lily and the dinosaur
Lily's first subway ride (she was a lot more excited for
the ride than she was for this photo!)

Coraline and a bone bigger than her!
* On April 8, we bought Coraline her first pair of shoes!  About a month ago, she started watching Sesame Street and is a big fan, so we picked out some red Elmo sneakers as her first pair.  We also tried on the basic white "first shoe", but in the end we decided the the red kicks were more her style.  Here she is trying them on in the shoe store, than wearing them for the first time the next day.  She still can't walk, but her Physical Therapist asked me to buy them now, so we could do some of her therapies/practice outside on warm days.

First shoes!  (16 months old)


* In related thoughts, Coraline has been having therapy 4x a week.  She's making great progress - she's using her right (affected) hand more and more, she can cruise on furniture and walk pushing a walker/shopping cart like a pro.  She however, has not had her first steps yet.  (She'll be 17 months on 5/12).  They'll come eventually, so for now we're still working on it.

* Coraline also receives speech therapy and in the past month has learned three words/sounds.  She says "ma" and/or "meh" which seems to mean both "mom" and "more".  She says "dah" for dog and she says "ha" for hi (and when someone enters a room, she waves at them and says "ha").  Having three meaningful sounds is a huge improvement for her!  
The other day, I was cooking in the kitchen and I had put her in a playpen in the living room for a little while.  The dogs were gated in the kitchen with me.  Well, I heard her all of a sudden shouting "dah, dah", and I thought "what is she talking about? the dogs are in here with me, she doesn't see a dog".  And I looked in the living room, and sure enough, one of the dogs had escaped from the kitchen and was prancing around in front of her playpen - and she totally tattled on him!

* When Coraline was a year old, she had 4 teeth - top two and bottom two.  Now by 16 months, she has 9 and there are 3 more under the gums RIGHT there about to cut through!  The teeth are just cutting all at the same time!  She now has 4 bottom teeth, 3 top front teeth (and the 4th is about to cut), two top molars, and the bottom two molars are right at the surface too. Lucky for everyone, she's not a fussy teether, or it would have been a really rough past few months.

* In March, we did another photo session with Satin Sky Photo and got some beautiful shots of the girls!  I love the images (and the dresses I found).  I can't wait to do a Mommy & Me photo shoot next month also!  (I have NO photos of me with the kids that I like.)






* We had a low key Easter at home, but the girls did an egg hunt (even Coraline!)  The Easter Bunny brought them baskets and we had dinner with family.  

Dyeing eggs with Lily, a few days before Easter.


Aha!  Lily spotted another egg!


Coraline's first egg hunt!

Coraline was super excited to discover that her eggs were filled with Goldfish!

Happy Sisters!
* As far as work goes, Missy has been at her job since July 2012 and is about to go into the really busy summer season!  My job actually ends June 1, since the school I work at closes for the summer - but I hope to go back in September, and Coraline will be old enough to actually attend the pre-school!  

* For a fund-raiser, Lily's school had a Mystery Art Sale last week.  All the students made 5x7 works of art, then the parents, local artists, etc. were asked to contribute.  All the art was hung in the local gallery, and were sold for $20 a piece, anonymously!  You didn't know if you were buying art from a kindergartener, an 8th grader, a parent, or a professional artist!  The names/artists weren't revealed until pick-up on the last day.  We went on the first day of the show to see Lily's art (and to buy it), but when we got there, her piece had already sold!  So we were sad that we couldn't buy her art, but also proud of her that someone else liked it enough to buy it, on the first day even!


Lily and her art (the underwater scene on color blocks)
* Last week, we watched "Catching Fire" on pay-per-view, since I missed it in the theatre, and the girls thought it was totally boring!   They fell asleep on each other, and it was so flippin' cute, I had to snap some photos:

Sleepy Sisters

*  And today is my grandma's birthday. I wrote blog posts about her Here and Also Here.  It's been 3 years since I've seen her, and so today I'll remember.   I still think about her often and miss her all the time.

3.12.14 Coraline loves swinging!



I think that sums up the past few months!  Looking forward to some warm weather (before it gets HOT) and spending some time outdoors with the girls!

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Thursday, January 23, 2014

Cake Smash and Epinephrine


The not-pink cake
Last month we celebrated Coraline's first birthday (I still can't believe my baby is one!)  Instead of doing a birthday party (which is way more difficult with a winter baby, since backyard BBQs are out), we decided to do a Smash-Cake photo shoot with her.  Her only other professional photos ended up being a nightmare situation (poor quality), and so I was a bit nervous to hire a photographer.  But, lucky for me, one of my co-workers (at my new job) is super awesome and so I decided to hire her.  I spent two weeks shopping for the perfect outfit, in ten different stores, (I brought home three and tried them all on) and a week trying to find a bakery to make the perfect cake. (Since we live in a resort town, many things are closed in the winter).  I fussed over every little detail and prop (what would I use to tie down the balloons? and what plate would I put the cake on, etc.)  I just wanted everything to be perfect.

(All cake-smash photos courtesy of Satin Sky Photo: http://www.satinskyphoto.com/ )

I decided on this beautiful cotton-candy pink, lace-rosette dress I found at Baby Gap.  It was a tiny bit big on her, but really so beautiful.

I went to a local bakery to order the cake - I showed her photos of the pink dress and asked her to make the frosting match the dress (pink!) and asked for white swiss dots.  I decided to use a clear blown glass Christmas ornament we have a set of to weigh down the balloons (my wife's parents bought them in Europe for us a bunch of years ago before the kids were born, and they're really beautiful) and I decided to use one of our vintage Jadeite plates (when I met my wife, she had a small collection of vintage Jadeite, and as a gift one year, I finished her collection with all original vintage pieces that I found on ebay and in antique stores, so Jadeite has meaning to our family, and we use it for special occasion place settings.)  I ordered bubble-gum pink and white balloons to match.  I had a vision.

Well, I went to the bakery to pick up the cake... and they opened the box - and showed me a peach and ivory cake!  NOT pink and white!  It was way too pale and totally the wrong color.  To say I was upset was putting it lightly. It didn't match the dress OR the balloons!  And it looked washed out, and more like a wedding or anniversary cake than a birthday cake.  The baker wasn't even nice about it and when I pointed out that IT WASN'T PINK, she told me "that's your opinion."  I literally cried in the bakery.  Big ole' first-world-problem tears, right there at the counter.  They basically told me "take it or leave it".  And since the photographer was due in 2 hours and probably had her car loaded with equipment already, I decided to take it.  (At full price... *grumble*)

We went ahead with the photo shoot anyway.  Coraline ate most of the flowers off the top of the cake, but the frosting was kinda hard/thick so she had a hard time really getting into the cake.  But it did get sufficiently smashed.

The happy part of this story - is that we got really good photos.  I was really happy with the results, and despite the cake being beige and not pink, it still was a pretty cake.  It was NOT what I wanted, but I decided not to let it ruin our photos.  Jenn at Satin Sky Photo did an amazing job, and all of the little details besides the cake, did photograph just as I had imagined them.

Next comes the scary part.  As the photographer and assistant cleaned up, I took off Coraline's dress (which was very cake-y) and she had hives all over her body.  From neck to diaper, front and back she had white pearl-sized hives, surrounded by red skin.  Since she has sensitive skin anyway (and breaks out from the littlest thing, even a TAG in her clothes will make her red and scratchy), I wondered if it was a contact rash, and so when the photographer left, I threw her in the bath.  I quickly washed her off, but by the time I got her out of the bath she was paste-y white pale and, well, for lack of a better word, floppy.   She couldn't hold her head up, she couldn't stand, etc.  She was also relatively non-responsive.  She just laid in her crib and looked at me with a blank stare (while I was running around trying to get my purse and things together to take her to the Urgent Care).  She started vomiting, and threw up in the car the whole way to the doctor's office.  They checked her breathing and pulse-oxygen, and decided we didn't need to give epinephrine or benadryl because she had thrown up so much of the frosting.   Within an hour she turned pink again and was back to "herself", but it was a very scary hour.

Last week, we finally got in to see the allergist.  On Thanksgiving morning I gave her scrambled eggs for the first time, and she threw up all over the place Thanksgiving afternoon.  (yuck).  I called the bakery, and the frosting had raw egg white in it (and she didn't really actually consume much of the cake itself, she mostly just ate the frosting flowers off the top).  So between these two things, I assumed she has an egg allergy.  The allergist did an egg allergy skin test, and not surprisingly, it came up positive.  And so we walked away with the Grand Prize - a prescription for Epi-Pens.   And I am now Mom-Who-Reads-Labels-On-Everything-And-Carries-An-EpiPen.   Definitely unfair to discover a food allergy while eating your own birthday cake.  But at least now we know, and now we're prepared.  There's a good chance she'll outgrow the allergy the doctor says (and we'll redo the test in a year), but there's also a good chance she's susceptible to other food allergies (namely nuts) that we need to look out for now.  So that's one more thing to add to Coraline's always growing medical resume.

So, Happy Birthday, You're Allergic to Eggs!   Though we did end up with REALLY adorable photos.  We ended up with probably close to 40 photos, but these are some of my favorites.

So, here they are, Coraline's First Birthday Cake Smash Photos.  (Thank you again to Satin Sky Photo!)
















All photos are property of the photographer, and purchased by me - and may not be used/copied/altered in any way anywhere on the internet or in print.  Thanks in advance for respecting her work.

Please leave a comment!  How did you celebrate your babies' first birthdays?  And have YOU done a cake smash???  Link me to it, I'd love to see it!  Anyone else have egg allergies?  I'd love to hear about that too!  Which is your favorite photo?
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