Elmo Brace

Concentrating so hard the
 tongue is out

Soooo lefty arm, it doesn't like to cooperate very well (duh). For a little while Annabelle was doing well with just a reminder of "use lefty". Not that it was very functional but she'd put lefty up on the handle of the cart or up on her highchair tray, things like that.  More recently she's just been ignoring our suggestions to use it.  Jim and I also got pretty lazy about setting aside specific times to do therapies at home (gosh we were soooo good when she was a baby baby, 30-60min practically everyday. It got so much harder when she realized she could say no and just not participate...oh toddler-hood).

Go lefty!

In any case, now that we are getting older and wanting to do more things it's going to be more and more important to make lefty arm functional as possible.  Can anyone say POTTY TRAINING, hard enough to do by itself let alone without the function of one of the toddler's arms. So after talking with OT and a lil nudging from mama we got a brace made for righty to do a bit more formal lefty work. So while it's not full-time like "real" constraint therapy it is making Jim and I set aside special time to work on lefty. Since she loves Elmo and the color red we had her OT make the cast out of red material and Annabelle now calls it the "elmo bwaay"...

Workin hard with the
Elmo brace on

She likes to say it, then hates when we put it on. It makes a great weapon too and she took a fabulous gouge out of her changing table when she was wailing it around in a fit.... boo. She did pretty well with it on in our actual therapy session when she was given some snacks to get into her mouth (so my kid... easily bribed by food). She's not too keen on puttin blocks into the jar though. Next on our list at home is to try the snack idea!





"Elmo bway ooooff". Also, we are
ignoring the W-sitting while working with
the arm, thanks for noticing ;-)

 



Race Day!

So Race Day was last Saturday. I couldn't have asked for better weather and my bike was fixed up (at the start of the race anyway). We woke the gummybear up bright 'n' early to head out to American Fork about 45min away, packed with all my gear as well as hers. Whodathunk we could fill the car when we were just going out for the morning!

Marked up and ready to go. All in purple (including nails)
 and with my ribbon on my arm!

 I was so nervous before the start, I got all my bike and run gear together in the transition area and went out to meet back up with Jim and Annabelle (who I swear was eating every time I saw her that morning!). GB laughed at me while I was warming up, a lot, which calmed me down quite a bit. Then it was time to line up by the pool. It was self seeding so everyone went around going "what is your average time on the swim". I was generally a 5:30 but put myself with the 6's so that I would hopefully not have to pass anyone in the narrow lane with someone comin down next to you in the other half of the lane.


Boy was that swim chaotic! There were still a bazillion people in front of me to start and there were gals breast and back-stroking in the pool. Don't get me wrong, if that is your stroke of choice all the power to ya, buuuut let's be real, your time is not 4-5min for that swim breast-stroking. In any case, my turn came and off I go. And yep had to pass LOTS of people. This was a good thing, as I was swimmin my butt off but kinda stressful too. So in the end my swim time was ~7min for 300m, not great but I had to slow down and breast stroke for a while to get around people in the middle.

Crazy swim. I got my arm out of the water

Oh them jacked up gears! Holdin' em
in place

Next was the bike, 2 loops around this cute lil neighborhood, 1 giant hill and the rest flat or downhill. It was a great ride and my time was ~48min for 12.75mi! It was kind of funny towards the top of the big hill because EVERYONE was slowing waaaay down and there was this bottle-necking effect, musta looked crazy. My gears got jacked up again in the middle of my second loop but thankfully I was already up the giant hill.


And finally the run, no gear just off the bike and go! It feels weird if you ever try it some time and when I do my next race I totally need to work on this transition because of that feeling. My run was decent, I had to power walk up that giant hill but afterwards someone found me and told me that I kept them going because I was still quickly workin my way up, even though I wasn't running at that moment. My run time ended up being 28min for about 2.9mi

Almost there, don't die yet!

So overall my time was ~1:29, I finished faaaar from the bottom and in the upper half of all the gals that finished. I was so proud of myself, I actually did it! Annabelle was chillin the whole time in her stroller and cheering me on. Even after I was done and we were just sitting around on the grass she would randomly start clapping and say "Yeah mama, yeah!" What a great cheerleader and motivator.




Most importantly, I was able to raise $700 for CHASA throughout stroke awareness month. Thank you so so so much to everyone who donated to my streak. It means the world to me to have your support and to know that each and every person loves and wants the best for Annabelle as well!

My biggest cheerleader and the reason for it all!

Adversity...

My daughter is going to face it, she already does on an almost daily basis. She's just so awesome I don't think she realizes it, and I'd love for her to hold on to that as long as possible.  But when she does realize and she wants to just say "fughettaboutit" I think it will be important to be able to share with her different examples of how everybody everywhere has SOMETHING they are trying to overcome, so that she #1 doesn't feel alone and #2 keeps on trying to do her best.

Two days ago I was going out for my final bike ride before race day (which is tomorrow) and as I was going up a hill I tried to downshift my gears so that I would actually make it to the top. Well something popped somewhere and my gear would not stay in place, it would "default" spring back to the highest flippin gear! I finally made it to the top of the hill and hopped off the bike to assess the situation, remind you I have absolutely NO bike experience other than recreational. I had no idea what was wrong and could barely ride on a flat surface with how it was resisting me, let alone try to ride in a race. So there I was throwing a fit at the top of the hill, miles from home... very becoming of an almost 30-year old mom (luckily I was kind of in the middle of nowhere so no one saw and this is the only account of that so shhhh). I finally made my way back home by holding the gear in place manually for half the ride then walking my bike the rest of the way.

What in the world does that story have to do with the first paragraph? And why is she racing without knowing the first thing about the mechanics of her bike? Great questions... To the first: while it ended up being an easy fix and there was not much for me to throw a fit about on the hill, I didn't know it at the time. I felt down and out and a bit defeated as it was only a few days before the race. However, once I got the bike home I was prepared to get the it into the shop, and if it wasnt ready in time I was also ready to go out and buy a new one. I am going to finish that race!  Adversity, although minor, overcome! I realize this does not even compare to what Annabelle deals with on a daily basis but it is a similar feeling and while I could have just said "oh well, guess no race" I instead put on my big girl panties (Jim hates when I say that) and moved forward. And like I said, now the bike is fixed back up and ready to go.  As for question 2 above: ummm... I don't always think things through and just kinda thought I could ride with no issues coming up?... I have since seen how to refix the gear issue if it happens again and kind of know how to change the tires if they go flat, although I feel like that might be a very looooong process for me.

I did a very easy swim this morning just to get the muscles moving, as this week has purposly been very lax. I am still hoping I don't die tomorrow (or freeze, the temps have dropped around here in the past few days and we may be swimming in like 40-something deg weather... Brrrrrr).

Mmmm chicken wings... she's a true Buffalo girl deep down :-D

Happy Happy Birthday Baby...

Well back to the grind this week. After that last pukey post Annabelle started havin some good blow outs, ewwww. And then mommy got it! bleck for being up all night and then not being able to move off the couch for a day and a half.


Last week the lil one and I traveled to NY for her 2nd birthday party (take advantage of the free under 2 flying as loooong as possible). It was an exhausting but wonderful time! Annabelle absolutely LOVED her Elmo party. She woke up from a nap to a decorated house and going "Oooh elmo! Ooooh Ernie! Ohhhh Abby!" when she saw the curly-q's hanging from the ceiling. Then she went into the living room and almost died when she saw the Elmo balloons that her Aunt Kris had gotten her, "ELMO BALLOOOOON!" Oh my gosh it was too funny! Annabelle also loved being the center of a lot of attention from the whole family (she's such a ham) and meeting new little friends that are about her own age. All the little kids seemed to get a kick out of the pinata, as did some of the adults (tip, hide some mini liquor bottles in the pinata, the "big kids" were all over it once the pinata broke open!)



On her actual birthday, Jim and I took Annabelle to the aquarium. It took her a little bit to warm up. When I first tried to put her down so she could see some frogs she literally screamed and wrapped her arms around me super tight in a scared way, that was the first time I've ever seen her react like that to something. She loved the otters though. She got lots of presents and lots of junk food, I'm pretty sure she had a great day.

Playing with the kitchen her daddy and I made for her

Enjoying some birthday cupcake and ice cream

So like I said, now it's back to the grind. I'm back to work, Annabelle had therapy this morning and Jim is back to school. Annabelle is going to get casted for her righty arm next week by her OT with a removable cast so that we can do a bit more intensive work with left hand. The OT has been hesitant but I was pushing for it. OT is worried that Annabelle will spend the entire time just trying to get the cast off. She was also worried that if  we did "real" constraint therapy and left the cast on all the time, she could get really hurt. She still falls over a fair amount and does not have a protective reflex to put lefty arm out to cushion the fall. So it won't be on all the time, but I think Jim and I need a lil more structure to work on that arm more. Saying "use lefty" just ain't cuttin it no more!  Her botox should also be around its peak now too. I'm sad to say I have not noticed a HUGE difference like we did with the last round. She is easier to stretch but she is still ignoring her left arm most of the time, fisting at least 50% of the time and her gait is none better (in my opinion). We shall see...

So with all that going on, my triathlon training kind of took a backseat. BUT now that we are officially into May and streaking month and the Tri is only 17 days away I'm back on my regular schedule. Since the weather is much nicer now I've been able to bike and run outside a bit- OMG is it so much harder than at the gym... Gotta keep pushin for now and geeze I hope I don't die on the day of!!!

Pukiness

Tahehe, medical terms? yeah right, I'm a pediatrician I talk in "mommy terms"...

Alright so pukiness + toddler = totally normal viral gastro. Still a big boo and not fun but when your kid has hydrocephalus and is not shunted and daycare calls and is all like "She seemed totally fine, running around playing then (((bleck))) twice. But don't worry she's back to running around and playing"... no fever, no being clingy, no diarrhea. It makes me nervous. A symptom of increased pressure in the beautiful big head of hers would be vomiting.

Got her home from daycare yesterday and she was her super cute normal self, lotsa kisses and hugs too for mama. But then she took a lil nap with her daddy and when I went to get her up a bit later she immediately puked on me. Totally fine and smiley afterwards.  Then I was a bad mommy and pedi and let her gobble down her veggies for dinner (she asked for them!) but then even worse she pounded her sippy of water (oh she's gonna be fun tailgating someday)... and there it was again, although this time she was pissed about it. This was immediately followed by bath and cuddle/story time

All logic and reason and medical training points to the 'ol viral gastro as being the culprit here and I'll be totally honest when she felt a bit warm last night I was hiphip-horay'ing in my head. Didn't actually take a temp 'cause she was out after story time.  She was a bit fussy overnight and is still sleeping now (late for her) but to be totally honest I'll be doing a huge happy dance once she starts in on the big 'ol poopy diapers, I'll even take the blow-outs (who asks for that?)

And you thought you were a neurotic mama.... ;-)

Finding Easter eggs in the back yard- greatest toddler entertainment EVER!

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"