PISSED

I am so mad at our hospital/ rehab dept right now!

So, in my last post I mentioned how Annabelle was starting to get really tight for stretches and her gait is starting to suffer, BUT botox was just a few weeks away and she responds really well to it (delayed to 5mos interval b/c of our regular rehab doc moving out of state).

Well fast forward to a week before botox and we hear from our therapist that a few of the rehab providers left suddenly so we should call and confirm our botox appt (said therapist is a few towns away from where all this is going down so she is just hearing things from other families).  So I call and sure enough the secretary is all like, "yeah we only have 1 provider doing botox now so we will have to reschedule you for NOVEMBER" (now >7mos delayed from our last session). I then ask her, "well this is now less than a week away from our original appt, was anyone going to call me?" and they are all, "yeah, at some point but we hadn't figured out how to handle this yet."

 Oh geeze thanks for figuring out your shit first (not really) while we are going along with time off of work and school and special therapy appt's set up for casting afterwards... great f*%king customer service!  And as it turns out through the grapevine other families were NOT called. They showed up at the hospital and there was no doc there to do the injections!

In any case, we got Annabelle into a private clinic (We *think* is in-network for our insurance) and got a new botox appt moved up to early Oct with them. It's about a month sooner than what the hospital could do and I'll take it. Even with putting Elmo on the Ipod Annabelle has been SCREAMING and crying during stretches for the past few weeks, saying it hurts and she has never done that before. Jim and I can absolutely tell she keeps getting tighter and tighter as well. It absolutely breaks my heart!

As a result of all of this, there is going to be one hell of a letter sent to the clinic manager about how incredibly poorly the whole situation was handled.  I'm also miffed that the providers we are now going to in the private clinic are the ones who suddenly up and left the hospital, leaving the families in a bit of a tizzy. It does kind of kill me to given them business but at this point it matters more that Annabelle gets the damn injections....

On a much happier and less frustrating note, this is GB petting the piggy (and then telling her
which way to go) at the local heritage park. So stinkin' cute!

Here and Now

I'm a big fan of summer, always have been. As a result, I haven't posted in a long time because #1 we've been so busy with summertime and #2 I just really have not felt like it.  I'd sit down to write a bit and be all like "eh, not too much going on" and it kind of made me sad that we stalled out for a while on gross motor skill progress.  I'd also start to think about the coming years and feel kind of overwhelmed.

Bad Veronica for doing that! Focusing on the negative again and  more on the future (school) than the here and now.  I still get caught up thinking about school stuff for Annabelle since I'm seeing all the kids for school physicals at work but I've been making a conscious decision to stop myself in my tracks as soon as my thoughts drift anywhere past kindergarten. It can still be stressful trying to decide if she should be in daycare now versus this Montessori preschool a few friends love versus head start once she's 3 versus regular preschool..... but at least I can handle that.  Sometimes I even need to say it out loud to myself, "Stop! not past kindergarten". I probably look/ sound funny but it works.



Hiking on her own at Craters
of the Moon

I would like to brag a bit, about the here and now :-D I knew Annabelle was picking up a lot of things, especially from her "Elmo TV" (NOT that we use TV to teach her and she's really only allowed to watch Elmo on weekends or special days. We just use a lot of the characters and songs to teacher her things) what I didn't realize was HOW MUCH she's picked up this summer: even though she needs a fair amount of translating she communicates incredibly well. She knows half her letters and can kind of sing the ABC's, she can count to 5 and she knows her colors! She also knows the words to a ton of different songs- Sesame Street and NKOTB ;-) hahaha.

With the gross motor we did kind of stall, although I have seen her trying to put a piece of thread and then a thing of yarn into lefty hand. I thought that was weird, maybe it's a texture thing for lefty and I will be trying to exploit that. I think part of it though is we have gone since April since our last round of Botox and girlfriend is TIGHT... we don't go for another round until we are at 5mos out and we've decided that is waaaaay too long, you could tell it was too long before we even hit 4mos. Kind of a bummer that she metabolises it so fast but at least it works for that bit of time. Her rehab doc mentioned some different botox formulations that were coming down the pipeline that may last longer for her, I'll be interested to read about those though I bet the cost would be astronomical.

So now we're toward the end of summer. We've had a very fun time, Jim and I have been racing, we went beach camping, went on a few hiking trips, took Annabelle to a few splash pads and community pools, lots of family bike rides.... We're excited for fall now too though, apple picking, pumpkin, hiking in the leaves and FOOTBALL!

Playin in the sand while beach camping

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!