Restraint Week, Day 2-4

Annabelle kept doing GREAT throughout the week! As we went on we did a few more structured activities to allow lefty to get a lot of active use. Mealtimes still seemed to be the best and most intensive "therapy" but there was still no fighting, which was really nice, meals just took forever!

We did a bit more baking, because Annabelle loves to cook (eat) and it takes so much grasping and rotating her arm it was one of the best activities we found. We played the Elefun game multiple times and she improved throughout the week in her accuracy and speed in picking up the butterflies and with holding onto her net.  Too bad she still didn't actually want to catch any of the butterflies. We also played the "Frog Game" where you pick up lilly pads, rotate them to see the animal on the other side and match 2 together. Then once you have a match you get to stomp on the "button" to make the frog fly into the air (Oh hey left leg therapy, we didn't forget about you this week!).  This game was a lot more difficult and she needed a lot of help as she had to isolate her thumb to get it under the lilly pad to pick it up and then rotate her wrist but it was still helpful.

We of course painted with lefty because Annabelle absolutely loves to get paint everywhere, the projects didn't last nearly as long as normal but lefty did get to get a bit goopy and I have a lovely lefty painting sitting on my desk now. We also did a lot of play-doh with lefty. Lucky for us Aunt Kris had sent some new play-doh toys for Valentine's day so that kept us very entertained. We have a few rollers and blocks with shapes to push into the play-doh which was good for lefty to open/roll, grab and push. Part of our new set let us make play-doh turtles which Annabelle really liked but when she wanted something new made out of the play-doh lefty had to grab the turtle and "smush" it so lefty also got a lot of squeezing/ strengthening practice.


It is also starting to get nicer out around here, finally. So we took her new bike from Xmas out for a spin. I couldn't get her off the thing! It was difficult to learn the steering concept since she couldn't even hold on with righty, she was concentrating very hard on grasping with lefty aaaaand I was kind of mean about the peddling and made her legs do a lot of  the work, which is still very difficult for her (again, hey lefty leg I totally didn't leave you out!). She got so worn out the first time we took it out she put her head down on the handle bars and told me "night night".  We took the bike out a few times and each time her lefty grabbing and steering skills improved and her peddling strength got a little bit better!

Looking pretty exhausted after an hour of bike riding

There are a few more things that we did throughout the week, I will post about those later. I have some good videos and really don't want to over do it in a single post!

Restraint week, day 1

There really was not much going on for the past few months.... Really busy with visitors and the holidays. Our therapists wanted to give Annabelle a break so we weren't really going there or working specifically with lefty for awhile.

Well bring on the new year and another round of Botox! This time we decided to cast righty arm afterwards to force Annabelle to use lefty. No planned intensive therapy but I took some time off of work (no way was she going to day care without a functioning hand) and did some activities at home that promoted some serious lefty work...

Day 1 and she was already doing well. The cast didn't bother her at all, she thought it was funny and kept telling righty "not today righty, it's a lefty day!" The first day we kept things pretty simple and mostly focused on getting lefty to help during meals. Our pronation/supination was a huge area to work on so eating was good practice. We also made pink cookies for valentines day, she had to grasp the measuring cups and then pour them into the bowl, which worked out great. She didn't think of it much as work as there was chocolate chip cookie dough and cookies when we were all done!


Struggling a bit at first, but much improved just a few bites later!

I LOVE this picture, the rotation of her wrist looks so "normal"!


We also played some games that specifically made her reach out and grab things. She loves the Elefun game, not that she tries to catch the butterflies with her net but she holds the net, laughs at the butterflies flying and then will pick them up in order to do it again... It's a riveting game for mommy and daddy ;-)

We are already seeing progress from lefty arm and she's still in a good mood with regard to the cast. It is really exciting to see. More activities and progress to follow!

Night and Day

That's botox for Annabelle, like night and day before and after.  She had the procedure done about 3 weeks ago now and you could totally tell a difference just a few days after the procedure. She always responds very well in the arm, less in the leg but it is still very well.

Here's a video of our first OT session after botox, she is willingly using lefty arm so much more than we had ever seen before and was much more accurate!

 

Her leg was casted after botox as well, just for 1 week. Thankfully, that's the only casting she needed to stretch her muscles out rather than doing serial castin. Her PT was really pleased with her range of motion once we took the cast off so I would say that the amount of botox to each area of the leg was good too. Nightly stretches have become less of a fight and more plesant as well :-)

While we were getting the botox done the rehab docs mentioned wanting to do some phenol so that they would have more botox to use in other places. One being her pectoral muscles (chest) to help her left arm reach out easier, I had never thought of that one. In any case we declined the phenol b/c it was mentioned the day of and I was not able to read about it beforehand. From what I do know it is much more painful afterwards and I don't think Jim and I were mentally prepared for that, plus we left 2 days later for Vegas and left Annabelle with his mom. We didn't want Annabelle to be extra cranky for her while we were away!

Another thing that was mentioned by both the rehab docs and PT was a Selective Dorsal Rhizotomy (SDR). Her PT, who I trust very much, is encouraged by how strong Annabelle is "underneath" the spasticity. It sounds pretty intense to me, it is essentially going into the kiddo's spinal cord and cutting some of the sensory nerves coming off the spinal cord. The patient then needs to lay flat on their back for 2 days and is followed by 10-14 days of intensive inpatient rehab. Most people struggle to walk at first and there is a large amount of weakness since it is the first time the spastic muscles are no longer taking control of everything.... Like I said, pretty intense. From what I read there are definate benefits, everything from improved lower extremity use as well as upper extremity use to improved cognition (presumably due to not needing to concentrate quite as much on the lower extremity muscles) and less ortho procedures. 

There is no way Annabelle would tolerate that at this point, only being 2.5yrs old and barely tolerating an hour of therapy here and there let alone 2 sessions a day. I think part of the reason it's being brought up so much is "THE guy" we would want to do the procedure is retiring in the next year or so.  We have a bit of discussing and researching to do...

 

 

 



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!