Second Verse....

A lot worse than the first :-( boo! Annabelle had her second round of botox this past week, needless to say it did not go as well as the first and was overall kind of a crappy experience. She did pretty well throughout the morning eating just her jello- her daddy kind of tricked her into trying it and then she decided she really liked it! We spent a lot of time playing outside to keep her occupied and not wanting to eat.

We got to the hospital around 12:30 and she actually continued to do pretty well, though was starting to get really tired since we were in the middle of naptime.  She played with some of their toys and ran around the unit with Elmo in a stroller. She got to play with the anesthesia mask again and picked out her cherry smell for the gas.

Then it was time to take her back, and rather than go into the procedure room, my lil miss wanted to continue running around with Elmo (mama strike one). After a bit of coaxing we sat down in the back room. Unfortunately, rather than letting me hold her with the anesthesia mask to her face like we did last time, doc wanted her laying down on the table (mama strike two and prolly even three 'cause she does not like to be laid down at home let alone in a strange place with new people). I had to pin the poor girl down to keep her from grabbing the mask off her face (which dude smooshed on rather than holding it near her- did not need to happen that way) all while she was crying hysterically (mama strike four). I sang her her bedtime songs and had to really work to keep my voice from cracking in front of everyone. Then she was out and I ran out of the room crying...  BOO!

Procedure itself went fine and fast as expected. But then lil miss woke up and she was NOT PLEASED! Last time I walked in and she was sitting up with a cracker and was all like "oh, hi mama" with a smile on her face. This time she was tearing at the BP cuff and pulse ox and wanting to get out of the bed. She wanted to sit up then be held then get back down again. She wanted her fruit cup that I had brought but then got mad for I don't know why and threw some fruit on the floor. Wanted her juice then didn't.... Oh I felt terrible I just couldn't help her to calm down and feel ok. She was such a crank that the nurses in recovery were trying to get her out of there ASAP!

Luckily she had calmed a lil bit by the time we got outside, so we sat on some benches and let her finish her snacks and juice. She cuddled up into my arms while we walked back to the car and seemed to be doing much better, thank goodness! After that we took her out for a real lunch and she took a lil nap in the car. By evening she was back to her good 'ol self laughing and teasing.  It was just this mama that was traumatized for the rest of the night!

She had PT the next morning and Miss Beth was kind of amazed and felt like Annabelle had no tone in her lefty leg (although the botox really should not kick in for another week or two!). She also felt that Annabelle's right ankle was looking good and took her right brace off!!!! YaY! One of our new assignments is to have Annabelle walk around the house a bit more without a brace on lefty- her left calf muscles are starting to atrophy (get small and weak) because she does not go up and down at the ankle (plantar- or dorsiflex for all you med nerds out there). 

Oh my love-hate relationship with Botox, thank goodness it's only a once every 4 month occurrence and hopefully we will see some more improvement over the next few weeks!

Coloring Easter eggs all on our own this year!

Toddler-hood

Check out what I got crafty making...

That's right, a "time out chair" hahaha.  I just hope it works 'cause my lil diva thinks it's a great time to sit on things at her level- the bottom step, her lil chair, the pillows etc... it may defeat the purpose but we'll see.  Wow, a time out chair! Almost 2 years ago I would have never thought I'd be making something like that. So while we're getting into some "regular" toddler-type behaviors with the hitting and throwing things when she is upset it's an incredibly wonderful thing and to be totally honest I think it's great (ok maybe not after a long day at work and she's tired and throwing herself on the floor and hitting because dinner wasn't ready 5min ago but you get the idea...). She has the ability to decide what she wants, let us know, understand our answer, know that she doesn't like that answer and then try to do something about it. I don't really know how many people really appreciate the complexity of all that but I sure do! Let's just hope it's a temporary thing and isn't going to last for years and years and years, like maybe her mommy did :-P

Potty training? psssshhht... not even going there. She sat on the dang thing for one day. Now it's Me: "Annabelle do you wanna sit on the potty?" Annabelle: "No, all done, all done". Me: "But you're not all done, you didn't go peepee in the potty." Annabelle shaking head vigorously: "all done, all done."... 'k fine, she's not even 2 yet, I'm not pushin it.

In other news, I'm pretty sure the botox is completely out of her system...boo! She's fisting a TON with lefty hand over the past few days and not really paying as much attention to lefty as she was before. Her gait is about the same now that she is regularly using the larger brace (confession: I know it's a custom one and we kinda got too big for the pre-fab ones but I have no idea what kind of brace it is, I should really look). We meet back up with her rehab doc this coming week and April would be the earliest we could do another round, maybe we can increase her baclofen dose for a little while, we shall see.

Our second birthday is coming!!!! I'll be taking the little miss out to Buffalo for her party so she can see everyone (and then I have an excuse to actually throw a party!). I was gonna scale back buuuut we're doing elmo and I found soooo many cute and crafty elmo things to make for a party.... it's on!

Helpin' to make pizza on family night, followed by the viewing of "Tangled"

I'm STREAKING!!!!!

So I realize it's a little early but May is Pediatric Stroke Awareness Month, and as part of the campaign to raise awareness and funds people are asked to "streak" throughout the month...

"Pediatric stroke survivors work hard everyday, whether it’s doing therapy or finding a way to adapt a task, and we will honor their hard work by committing to a 31 day streak." The streaking is run by the Children's Hemiplegia and Stroke Association (CHASA) and you can read more about what the streaking donation go towards on my sponsor page...

Tri to Streak Sponsor Page

My particular streak will be training for a triathlon. The tri I'm lookin to do is actually the 19th of May which is why I'm getting started a little early! I can use all the training my butt can get :-) Now there are a few reasons I decided to do a Tri as my streak.

#1- For Annabelle. It's hard and it can be painful. It's even harder when the majority of your training days you gotta get up at 4:45am before work. I want to be an example for Annabelle, so she knows that she can do anything and overcome huge obstacles by working hard at it, even if it's hard and not always a ton of fun.

#2- I started going to the gym, just in general, a few months ago because my BMI was creeping awfully close to the "obese" category (no lie, ugggggh). Now that I'm down a few I wanted to do something to keep myself motivated, and what better way than publicly doing a tri and not wanting to make a fool of myself. I want to stay as healthy as I possibly can for my little girl. If she ends up needing a lot of help as an adult I want to make sure I'm around to be there for her.

#3- For myself. Since starting to get more healthy I have felt better about myself, had more energy and overall been a better mom to Annabelle. It's been a great way to channel my frustration, anxiety and sadness over her diagnosis and all that comes with it. Go figure I also have a higher tolerance for her naughty toddler behavior that has started even before hittin the "2 year-old" mark.

So those are some of the reasons. I'll try to update any interesting things about training on here, in addition to Annabelle's awesomeness. Speaking of which, thanks to the hubby, I have figured out how to get videos and pics off my iPad and onto my computer so I can put up Annabelle's before and after botox gait videos!

Brushed our own hair AFTER mama already put it in a ponytail!

Botox round 1

So we went ahead and did it in the beginning of January. I was hoping to put up some pics of "before and after", particularly with her ankle and gait so that I could go "Oh gosh, look at what a difference!" But alas, that ankle still was collasping in a fair amount. And the night splint we had made for her to stretch out her calf muscles was too tight and we had some skin breakdown... so she got casted and I couldn't see her ankle anyway.

Before- Lefty ankle collapsing in and some hyperextension at the knee

     

Her gait did in fact look much better with the cast on. There was a lot less hyperextending of the knee, her hips were more equal and her squats were much better. And once the cast came off, OMG the ability to stretch that girl... it was fantastic, stretches had not been that easy since she was little little!

After- casted and running around

I think lefty arm benefited the most from the botox, Annabelle was much easier to stretch here as well BUT the huge thing has been her paying much more attention to lefty arm! It's kind of funny sometimes because she'll treat her hand like another friend "Hi lefty, hi lefty." and "Lefty open". She's also reaching out from the elbow much more on her own to chase after bubbles and using lefty to help hold her babies, because we need to carry around at least 2! We're still working at her actually grabbing but on her own, because that's the only way girlfriend likes to do things, she has opened lefty and grabbed objects a few times!!!

Overall we will likely continue to do botox in the future as we saw a benefit with a total low dose for her weight. I think next time we will see about increasing the amount of drug that goes into her leg and maybe slightly higher in the arm and thumb, it wore off awfully quick!

Making Valentine's to send out to the fam!

 

Wonderfully Overstimulated....

Although I didn't think it was so wonderful in the moment! Annabelle had a beyond fabulous Christmas. Mommy and daddy were home with her for a long weekend, and there were cookies, and junk food and sparkling apple juice (her FAVORITE!)... it was however a bit overstimulating for her, shoot it was overstimulating for ME, I dunno how any 1.5 yr old kid could handle all that.

Overstimulated much?

Annabelle, being the only baby on either side of the family was absolutely showered with gifts, as were her mommy and daddy. There were multiple times throughout Christmas day when I got misty eye'ed and overwhelmed by the amount of love and support my family has. Although material things were opened Christmas morning we know that behind each item is a loving caring person who genuinely cares for Annabelle and wants her to do her absolute best! What better gift could ANY parent ask for?

And of course as a kid, Annabelle (after getting settled) loved all of her new toys. I was even thrilled when she started to "feed" one of her new baby dolls after she saw me playing.... can anyone say appropriate social development!!!!!

Singin and dancin to the "pum pum pum" song (Little Drummer Boy) over and over again...

And now back to the real world. I'm not sure what we're doing for New Year's yet. The past few years I've watched the "real" east coast ball drop then went to bed, bwahahaha, I'm so cool.  More to come on new year's resolutions and such. No weight loss blah blah blah though ;-)

Merry Christmas!



Christmas Cookie Extravaganza!

Every since the first year Jim and I started dating we do some major Christmas-cooking.  This year we got to add a third and while most of the time she was walking through the dinning room and kitchen bustin' a move to the Christmas music that was on, I think she had a pretty good time! Better than painting pumpkins anyway ;-)

First was helping daddy with the spice cookies. She had a great time "booming" the cookie cutters onto the dough. Then she would sample some dough, of course! Even though we didn't use lefty (I really wanted it to be fun and not hear screaming) we thought it was some great sensory input.

Then Annabelle wanted to do some "stirring" so she sat in her chair with the spatula going "stir stir stir" and imitating mommy...

... With some more pretend "sampling".

Mmmm cookies, Annabelle got some chocolate while mommy ate some rum balls!!! I think our neighbors will be very happy this year.



The Good, The Not So Good (but not bad!) and the AWESOME!

The Good: Annabelle continues to be amazing. She is walking ALL OVER THE HOUSE!!! She also seems to be picking up a ton of new words, although only her daddy and I know what she is saying most of the time, but it will come. And cognitively she gets it. Her current favorite is sitting on our big bed with her animal book "reading". She'll go through it and make the animal noises that go with each page!

 Also good, she is giving out kisses like it's her job, I LOVE this

Also good, half of my xmas shopping is done, although I better get on the rest of it 'cause we need to ship some packages to NY so they get there before xmas. I also just finished our xmas cards this morning (photoshop is not an intuitive program by the way!) aaaand I finished sewing Annabelle's xmas jammie pants... look at me being all crafty and whatnot.

Annabelle met Santa, wasn't thrilled, but didn't melt down, and then 'Ho, ho, ho'ed' at him, way too funny!

We're getting a night splint for lefty leg to keep Annabelle's calf stretched throughout the night. Shouldn't be a big deal b/c she is generally not tight when she is sleeping, and her calf isn't even the "bad one". Her left bicep is.

The Not so Good: We're scheduled for botox injections on Jan 4. Inandof itself it's probably not a 'not so good' thing as it should really help Annabelle with her arm use and developing a more normal gait.  The not good part is the sedation, last time she was put out for eye surgery was the only time I ever felt her fontanelle bulge a bit, so it worries me. It also worries me that the procedure is not until noon and her daddy will be out of town. How am I suppose to keep that child from eating until afternoon all by myself? Totally not looking forward to that part.
I am looking forward to seeing how she does afterwards. I am planning on taking before and after pics of her left foot- I hadn't watched her walk without her braces in a LONG time and didn't realize just how badly she is collapsing her ankle in when she's not in the brace.

The AWESOME: My baby. The end.... just kidding :-) I found out this morning that I passed my board exam so I am officially a board certified pediatrician, YaY!!!!!!!!!! Such a load of stress off my shoulders!!!

Walkin in a Winter Wonderland!