Archive for February, 2011

Laelia can stand by herself!

Thursday, February 24th, 2011

She just did it! I was talking to Charley about something, I forget what, and looked over and she did it. And we both kinda looked at her like stupid people and said, “Good job,” in an automatic way. It was really weak. We didn’t know what we were seeing. Then the squealing happened (okay that was me, not Charley) and the breathless rambling and the tears. Then we calmed down a bit and I got it on video. Once she did it one time, she could do it over and over! It looks so easy for her, but this has NEVER happened before!

In fact more than one doctor either directly said or strongly implied that this would never happen!

The day before we had watched YouTube videos of kids with arthrogryposis walking. (Bonnie is super amazing for one. She even was a flower girl in a wedding and walked down the aisle  in her walker that barely contained that  pretty poofy dress.) (That’s why our kids are on YouTube, people!) After all the videos Laelia expressed an interest so we got out her knee immobilizers and tried “walking” with me holding up her body weight. It was… discouraging. Then today she stands without the immobilizers (which is hard) and without prompting! In fact we weren’t even ready for her to be amazing! We just stared at her dumbly. :)

So tonight she stood by herself! All by herself! For the first time ever!!! And seriously for the first time in my life I’m thinking, I’m just for real thinking, “My gosh, she could walk one day.” And I’m out of breath. And I can’t see because of the tears in my eyes.

I know we ask for a lot with her, but just thank you God for giving us this one thing.

My Super Impressive Daughter

Sunday, February 20th, 2011

Here are three videos (embedded) that show how impressive Laelia is. She has been through a lot lately, but still does amazing things despite it all.


One of Laelia’s physical therapy exercises is when she leans forward on her red ball to put weight through her feet to stretch them. Well I think she wanted to show off tonight because she did this!


Laelia is getting pretty good at memorizing stuff so we’ve started repeating stuff at night to see if she’ll remember it. She memorized Genesis 1:1 and John 3:16 for fun. Next she’s learning knock knock jokes. It’s pretty funny.


Laelia can ride a horse! Okay well maybe not a real horse. (Phong took this one if you’re wondering who the voice belongs to.) :)

Best Valentine’s Day Gift Ever!

Tuesday, February 15th, 2011

For the first time in her entire life, Laelia crawls on all fours!!!! (Embedded videos below.)

This is super impressive if you consider that four weeks ago Laelia couldn’t even get up  on all fours by herself.  On January 7th Doctor Harold van Bosse told me I needed to  increase the physical therapy Laelia was getting to  at least two times a week with a professional to maximize her potential. Well that didn’t work out. Or at least it hasn’t yet. It’s been five weeks!  We’re still waiting on CCS and I have yet to do one single PT appointment with them. (Although we have done the initial evaluation. But like a bad first date, they never called after that.)  (Oh and they didn’t even give us  an OT eval, nor has anyone called me to rectify that!) So we’ve gotten by with private PT so far: two visits in our home thanks to a gift from friends,  and two official visits plus one evaluation at Children’s Hospital. But despite what little services we’ve  wrangled professionally,  unprofessionally we’ve done novice PT at home EVERY day. We change up the routine, but she does weight bearing on her knees and push ups every day. Eventually she just figured out that she could combine those two for crawling. She crawled for the very first time on Valentine’s Day! YESTERDAY! And when I say the very first time,  I mean the very first time. In her life. Ever.

Did I mention we have an amazing support group? Both on  amcsupport.org and on Facebook.  And one mom friend  (who I didn’t meet on either website, but she found me on this blog) especially encourages me by sending videos of her son, Ryan,  who is doing amazing! Laelia saw a video of Ryan crawling  and it put a bug in her bonnet, as my grandma would say, to do it herself a couple weeks later. This is the same mom who dragged me to Seattle’s AMC clinic  and  encouraged us to start  knee weight bearing because of how critical it was. (Thanks Kiersten!) Well it was hard to do anything with those wide knees  when Laelia’s legs were so abducted, but  I could prop her up in my lap or prop her up on the carpet until her legs slid slowly apart and she face planted. :)  But after her osteotomies (aka miracle surgery) it works great!

Here’s a video of her knee weight bearing in the past. She couldn’t do it solo using the table like she can now because of the position of her legs so she had to stay  in my lap.

I also  read Arthrogryposis: A Text Atlas  that’s available online for parents as well as medical professionals.  Starting on page 89 there is PT advice  for  babies with AMC,  and then  on page 106  or 107 I started to get some ideas for toddlers. I recognized so many techniques that our PTs have used in the past  with Laelia.  (Which is amazing considering that I doubt they have read this discontinued medical textbook.) God was directing some serious therapy when I thought we were going no where because of how slow the progress was!

So it was the best Valentine’s Day! And I’m so proud of my little one!  

She is telling me that she  wants to add that she did another first on Valentine’s Day. She ate a heart-shaped sucker all by herself too. It was her very first lolli pop. Haha! She is so full of surprises. I’m so happy to be her mommy!

In closing, here’s another video of Laelia first learning how to do this crawling thing. So great! I can’t get enough!

Website Banner

Thursday, February 10th, 2011

Have you seen the blog’s new banner? It’s an adorable little cartoon Laelia in her signature pose! When Laelia first saw it  she said, “It’s a me!”

The art was done by Lauren Burke who I am incredibly blessed to know. You can find more of her work on istockphoto.com or storkie.com or random places all over. I’m not sure exactly what she charges for her work, but in my case she did it in exchange for getting to babysit Laelia. :-D   Then I got Laelia to do push ups in exchange for playing with Lauren tomorrow. Is it wrong to  capitalize  on their love for each other?

:-D

You must be this tall… and able to stand… and not have arthrogryposis to ride this ride.

Thursday, February 10th, 2011

Back when my dad and I were first working out  their visit, I had  planned on not having any appointments for the three short days they would be here. So when CCS and Laelia’s chiropractor had to happen Friday, the day they arrived, we just shrugged and they got dragged along. We make it up to Lali by going to the zoo the next day.

There was an elephant playing with a log that just fascinated Laelia. But when he dropped the log, Laelia’s eyes got big and she squeaked, “Mama his trunk fell off a little bit!” :)   During my explanation of the elephant trunk/log we got a call from  our awesome  case manager (from our insurance!)  who saw the pictures of Laelia’s foot on  this blog and said, “You need to get her to a doctor! Don’t wait until tomorrow!”   We had been very careful with her ulser  sore doing wet/dry treatments, but we weren’t going to take chances. We made our way back home to grab showers and then headed over to Rapid Care. Sure enough Laelia’s foot was actually  infected!  And a rash was climbing over her skin. She needed immediate antibiotics.  I was  surprised because she never complained!  

Waiting for the Rapid Care doctor.

Signs of infection.

The Rapid Care doctor told us to see our regular doctor within two days. She wasn’t available, but another pediatrician in the same office was.  So we got an appointment the very next day during their Sunday  emergency hours. During that appointment (our forth medical appointment in the three short days  the grandparents were in town!)  it was confirmed to be a skin  infection, but  not a bad one! She wasn’t sick, had no fever, and  it wasn’t in her bloodstream or something dangerous so we just had to keep giving her antibiotics and it would clear up!  He bandaged it and gave us instructions for care and  even miraculously gave us the  green light for our trip to Disneyland the next day! (Laelia was talking nonstop about Disneyland so he made her day! She even invited him to come too!)

For the last ten days we have asked  Laelia every night, “Where are we going in ten days?” Or “Where are we going in nine days?” Or whatever day it was. And every time she yelled, “Disneyland!” So after our appointment  we asked her, “Where are we going tomorrow?!” And she replied, “The doctor?”   Ha! Poor thing.

Oh and at the mention of the “D” word,  my Disneyland-loving (crazy fanatical fan) husband mentioned that  Lali wanted to do more rides but we didn’t know how tall she was. So the doctor had the nurse come in and they  measured her lying on the table. From  flat foot  to the top of her head she measured 36 1/2 inches exactly without having to stretch out her contractures. Well that was perfect for the one coaster she wanted to ride. Charley then asked if  the doctor would  write an official note just in case anyone gave us trouble about it. The doctor did it with a smile and Laelia got excited about riding her very  first little coaster!

But not as excited as her daddy. :)

Doctor’s note officially stating she is 36 1/2 inches in length!

Laelia loves Disneyland. To put it mildly. She knows all the words to It’s A Small World and the Enchanted  Tiki Room. She watches videos about Disneyland when we’re not there. Since we live very close to Disneyland and since she was a free ticket until she turned three, we’ve spoiled her rotten with visits there. She even went to Disneyland in casts, weeks after surgery. Sometimes the promise of Disneyland is the only thing that keeps her going after a hard doctor’s visit or post surgery.

Dumbo Flyers

Grandpa and Grandma caved and bought her a bubble gun. :)

So the coaster she wanted to ride  was  the Gadget Go Coaster. You have to be 35 inches to do this. No problem. She’s  tall enough–or more correctly long enough–to ride. We got to the back entrance for wheelchairs (Grandma and  Lali were sharing one),  and when we got to the front of the line we said, slightly apologetically, “She doesn’t stand but she’s 36 1/2 inches.”

Cast Member Cindy: “She’ll need to stand under the line.”

Me: “She doesn’t stand or straighten her legs all the way due to a condition called arthrogryposis. But she’s 36 1/2 inches long. They measured her yesterday.” I said super nicely, feeling sorry for the cast member’s confusion.

Another AMC mom (Cheryl)  told me this great piece of  wisdom once that helps me in these situations. She said  that some people just don’t have a file in their brain-folder for AMC. It doesn’t compute. In their minds  based on their lifelong experience, all children stand and all children stretch out, so  finding out there’s one who is different just plain rocks their world. It’s definitely a  truism. We all have something that at one point we discover we don’t have  a “file” for in our “folder.” The first time I met a Deaf person (Sue K.)  she didn’t hear the door slam shut. That didn’t compute with me. I had never met a Deaf person, and even though logically I knew she was Deaf, I didn’t get that she couldn’t hear!  Everyone hears doors slamming, right?! :)  I feel dumb now, but I understand when people give me *that* look when first meeting my daughter.

Cast Member Cindy: “No, she’ll have to be held up to the line then. That’s the rule.  She needs to be this tall to ride, and she needs to be under the sign.” She gestured to that “You Must Be This Tall” sign.

(The only problem with not having a folder for something in your brain is that it’s sometimes  really hard to incert the file in other people’s  folders.)

Me: “No, she doesn’t need to stand to ride.” I’m still smiling. “She has a  disability. But I  assure you she’s 36 1/2 inches.”

Cindy: “You’ll have to hold her up to it then.”

Eventually we realize we were getting no where and Charley was forced to hold her up to the darn measurement. She curls up while hanging there so Charley starts to explain, “See how her legs don’t straighten out? That’s because of the arthrogryposis or joint contractures  in her knees and hips. You have to measure her lying down.” Even being held up to the sign,  she is obviously to me tall enough if she could straighten her legs.

Cindy: “She doesn’t come up to the sign. She’s too short. There’s nothing I can do.” Cindy tries to walk away.

Me: “She doesn’t stand and she doesn’t straighten out! I have a doctor’s note, see!” I try to hand her my doctor’s note.

Cindy: “I can’t take that! I’m not a doctor!” She actually pushes the paper away. (Oh and only doctors can read doctor’s notes?)

Me: “Okay but look it states 36 1/2 inches long by proper measurement and it’s signed by her doctor and dated yesterday.”

Cindy: “Her safety is at stake here. I’m going to have to call my lead because my job is on the line.” She mutters more things about her job and how it’s in some sort of jeopardy because of my daughter.

Me: “Well here’s something I made and it’s not medical, it’s just a little card that tells you who she is and what she has.” (I’m still being very nice and understanding at this point.)

Cindy: “I can’t take that! You can’t give me things!” She pushes the card away with open hands and looks horrified.

Me: “Fine then get your lead, but you realize this is illegal to keep us from a ride just because  she’s disabled.”

Cindy: “It’s fine.” She walks off.

Me (yelling at her back as she flees): “IT’S NOT FINE! IT’S ILLEGAL!”

Charley: “Okay calm down.”

Me: *huff puff grinding teeth* I go into advocate battle mode. Something I did not expect at Disneyland.

Ten minutes and several nasty looks from fellow park patrons later, THREE leads  (managers) show up and surround us. We’re introduced to two of them, one hangs back blocking our exit.

Lead: “What’s the problem here?”

I explain that my daughter is definitely NOT the problem–the problem is lack of education of the staff. The lead goes through a spiel on  how important safety is, once again making me some sort of bad mother doing something unsafe with my child. I correct her in full educate-the-people mode. I made her explain their policy for children who can’t stand. Apparently their policy is to ASK THE PARENTS!  Something the staff must not understand. She then  asks if  I STILL want to ride the ride. I never did want to ride the darn kid’s ride so I turn and ask Laelia, who  is fully capable of answering for herself, and  Lali begs to ride. The lead seems charmed by Laelia’s enthusiasm and finally lets us on the ride. She also  mentions that  the only other ride in the park that requires this height requirement is the Matterhorn and  asks me if  we would  like  them to call ahead to make sure this doesn’t happen again? I said no thanks since I planned on now avoiding the Matterhorn like the plague. I just couldn’t  fight another battle again today.   We finally got on the Gadget Coaster  ride.  Laelia loved it and begged to ride again. I was so  near tears that I just couldn’t go back in line and deal with all those people again. So we fled. We then, after a short trip to It’s A Small World, went to Guest Services and I explain what happened. While I explained I also broke down into  tears which I hate! Then I asked if there’s some sign/card/placard they could give us so this doesn’t happen again. (Even something hand written.)

Cast Member Colby: “We don’t really have anything like that. If your child can’t stand it’s our policy to ask the parent for the child’s height and we take their word for it.”

Me (crying my eyes out): “But that doesn’t work out in real life! I’m still seen as a bad guy. So can I have some sort of card with her  height on it? Or a pass for  certain rides so we can get on  without harassment?”

Colby: “We don’t have anything like that. I can offer you some free ice cream… if you want.”

Me: “Can I make a suggestion that you have some sort of official card with, say, Micky’s picture on it, and all it has to say is, ‘Can Ride  All Attractions for 35 inches and smaller.’  Or something like that?”

Colby: “We don’t have anything like that.”

Me: “No, I mean that’s my suggestion. Like for a suggestion box. You should have something like that. Can you pass that along?”

Colby: “We don’t really take suggestions.”

Colby was actually really nice (and  we did get five ice cream sandwiches out of him), but I wish he would have at least lied and  said he would  pass along my suggestion. Well maybe he thought better of it later and did pass it along. It’s a good idea! Some children who can’t stand yet  are small enough  for parents to bring strollers instead of wheelchairs to the park, and those children will run into this very problem! We can’t be the only family!

So we headed over  to California Adventure. Laelia fell asleep so we left her in a corner of  the park with Grandma while we rode the Screamin’. When we got back, Laelia had been awake for the last twenty minutes and  begging Grandma  to ride the bumper cars. That was the ride we parked her in front of for her nap.  So we got in line. Turns out this ride has a height requirement:  35 inches. You’ve got to be kidding me. We approach the entrance by the “You Must Be This Tall” stick with dread. I hold my breath. Charley chivalrously says he’ll handle this. He calms me down and says that now we have all the tools and rules we need to get by without a fight.

Cast Member Nathan: “I’ll have to  check her height.”

Charley who is holding her: “She’s 36 1/2 inches and doesn’t stand or straighten out all the way. She won’t be held under the sign. But I can tell you she’s exactly 36 1/2 inches.”

Nathan: “Then I’m afraid I can’t let you on.”

What?!

Me: “If a child can’t stand isn’t it your policy to ask the parents and take their word for it? We were just told this by three leads!”

Nathan: “Um, if she can’t stand under the sign then she can’t ride.”

Me,  lowering my voice  dangerously: “She’s disabled. (Wow, she’s had to hear that a lot today.) She’s 36 1/2 inches long. You’re not allow to ask for this, but I’m VOLUNTEERING   her doctor’s note with this information written on it.” I hold it up in front of him.

Nathan looks around furtively, “Okay go in.” He’s speaking  quietly like he’s letting us get away with something.

Me: “She meets all of your requirements for safety!” That’s my way of saying, “We’re not getting away with something and you’re not doing us a favor here! She rightfully gets a spot on this ride with every peer who is able-bodied.”

Okay this ruined my day. We joked about marching back to Guest Services and getting more ice cream. If we stayed much longer we’d walk  out of there with a year’s supply! Ugh but even chuckling felt hollow. My daughter seemed to be having a great time, but it’s not like this was all lost on her. She saw me cry. She heard over and over again that she couldn’t stand, couldn’t straighten out. What does that do to a child’s thinking about herself? Plus I was full on depressed. She would beam up at me and I would force a smile back down at her through the agony.

I mean in one day I’d been told that I’m a bad parent by putting my child in danger, or I’m a bad person by trying to do something sneaky.  I risked the employment of the cast members by not leaving, and made everyone uncomfortable because they had to deal with my sweet daughter wanting to ride a darn ride.  In conclusion I must be a bad person. That’s what I read in the eyes of other guests in the park who walked around us  to get on the  coaster or just  stared with this look that read: You, Mother of Different Child, are bad. I was completely vilified.

I hate when people are unhappy with me. I hate being *that* mom. I hate when I’m not following the rules. If it had been just me there I would have walked away rather than welcome a conflict. But it was my daughter. I’d do anything for my daughter, and I won’t let people trample her rights as a 36 and a half inch tall young lady. But I don’t know how to shield her from this. Or from the other guests at the park who look at her as the poor little girl with the bad mother.

It was right before we left the park, right as I was just feeling my worst, that  Laelia coughed. And it wasn’t one of her cute little coughs either. Oh no, it was a Nasty McAwful cough. One of those coughs smokers have. Sure enough she was getting sick. Of course. At Disneyland. We went home.

That night she coughed more and more as the hours went by. By the next morning she sounded hoarse, couldn’t stop coughing and had a runny nose. She also felt warm to the touch. I jumped online and discovered that these antibiotics we just started taking  the night before can actually  make colds worse or make you more susceptible to colds because they indiscriminately kill the beneficial bacteria in your body. And apparently they work fast. Goodie.

So I’ve had to cancel her PT, her chiropractor, her play date, the rest of her week at school, etc.  And I also had to take another leave-without-pay day off work.  

Not only that but we also went to our orthotics appointment finally only to discover that Laelia’s AFOs weren’t working for her at all. We actually can’t wear either one anymore because there are now holes in both of her feet! (And she is required to wear shoes to go to school!) Is this really happening?!!!  The AFOs have no padding and the heals of her feet were left to scrap the back of the shoe. It’s not just an issue of needing more padding, it’s a fundamental issue. So now we’re trying to get someone to make us new ones. Doctor van Bosse has been wonderful about emailing and trying to coordinate with the orthotics guys in Philly, but we may have to get something going down here as well. It’s a mess. The doctor we need to see locally isn’t available to get us in for an appointment for one thing. So Charley emailed Dr. vB our orthopedic’s phone number and hopefully they will coordinate between themselves. In the mean time it’s been suggested by more than one doctor that we get Laelia in plaster casts (!!!) until they can work out new AFOs for us that could take six weeks to figure out! Back in casts!!! No!!!!!!!!!!

Did I mention we did Turtle Talk with Crush and my daughter didn’t get called on because she couldn’t raise her hand? Did I mention our CCS appointment that we finally got worked out didn’t give us an OT eval?  Not only that but the  paperwork said  that “the mother requested PT only!” Which is just wrong! So now we’re back to fighting with CCS who hasn’t returned my phone call after a week of waiting. Yeah. So it’s been less of an Enchanted Tiki Room  week and more of a Mr. Toad’s Wild Ride lately. We keep waiting for Laelia to get better and not be in pain before taking our overnight break that we got for Christmas, but I’m starting to think that is not going to happen. I just hope this can all get worked out quickly and she can be a sickness-free, medicine-free and  pain-free little girl again.

When Plans Don’t Work Out

Thursday, February 3rd, 2011

Well we ended Monday with the expectation that Tuesday would bring our long-awaited physical therapy with CCS and a visit with the orthopedic office to get Laelia’s painful shoe adjusted. Well none of that worked out. CCS gave us bum information. They said we’d be seen Tuesday and I said I’d clear my schedule to accommodate that, but what they meant is that the therapist would  call us on Tuesday. I thought I’d clarified that and when a phone call was mentioned I assumed that it was to tell us what time to come over. Well that would have been the fastest CCS  had ever moved, so obviously it wasn’t going to happen. The lady I spoke with made it sound like it would be happening, but she was either confused or we didn’t communicate. (Because apparently I clear my entire busy schedule for a phone call?)  When the therapist called she didn’t know I’d been told that, wasn’t prepared to see us on Tuesday and didn’t know our urgency or that we had to do orientation and evaluation on the same day instead of a week or more apart. It was frustrating, but we did manage to get an appointment this Friday. Orientation will consist of me watching a dumb video. DUMB! Okay I’ll try not to judge too much before I actually go. :)

The only problem with Friday  is that my dad and Christina, who I haven’t seen in too long, have planned a short three day trip starting Friday to drive the ten hours south to see us. So now I’m dragging them to CCS and then to a chiropractic appointment instead of hanging out and having fun. Oh well.

I have a couple friends going through the same ordeal with CCS. One of my fellow  AMC moms can’t get CCS to call her back and couldn’t for the longest time figure out if they had even received her application! They should call it CCSucks. Har har, I’m so funny. :)  

As for getting the shoe fixed, we did get the auth from our insurance on Tuesday (love having a case manager again!), but when we called to make the appointment we found out there had been a death in the orthpedicist’s family. (Johnson Orthopedic is a great, family-owned business.) So we had to figure out if we should wait  for excellent AFO repair, or attempt to take care of this with someone else. I just hate to take away business from a great company and risk poor workmanship with a new company. My daughter’s feet have been through enough.

In the mean time  she’s still wearing the old AFO that doesn’t stretch her foot. And I’m  manually stretching her foot every hour starting at 1pm when I get home from work. Not fun.

So none of our plans worked out on Tuesday. But on the up side,  I did have free time for the first time in forever. I got to hang out with Chelsea. I didn’t have to rush through PT at home.  I got to look at places to move. We put a new offer in on a  foreclosed  house that’s owned by the government that night. *fingers crossed* I’m also looking at Condos and apartments too. I just really wish I could take all the stairs out of my apartment and move it to a better  street and that would be perfect.

Yesterday (Wednesday) we had a private, out-of-pocket PT come to our home. She’s filling in until CCS and Children’s can get us a stinkin’ PT appointment. It was pretty wonderful. Her name is Michele and she was great with Laelia. And Lali pretty much showed off all her abilities and learned a new one: making a tiny “bridge” with her little hips! Michele does yoga poses/stretches and does the voices for her stuffed animal friends  so she’s  great. :)

After Michele left, Laelia begged to do more PT! I was floored! I told her it was nap time, but she begged and pleaded. So  I got out the iPod Touch, jumped on You Tube and found every 10-30 second video  of every baby animal I could think of. The only rule, like with TV, is that she has to be weight bearing to watch a video. So she did a push up  through every video! I think she did  thirty small push ups all together! So I fed her a  peanut butter sandwich for protein and we went right back to it! By the end she was shaking, but all I had to  say was, “Ooh!  Here’s a video of a cute baby elephant! Or panda. Or mole rat!”  and she’d be doing another push up and begging for the video. Around 5:45pm she was  wobbly and fussy so I decided we’d done enough. She asked for a hug and when I pulled her into my arms she fell asleep! The fastest I’ve ever seen!  So  I lowered myself gently to the couch and shut my eyes. My husband got home to this scene:

The camera flash woke me up but not Lali. It took some doing to wake her up. Then her daddy carried her straight up to bed (no straps, oh well) and she slept a good, long while. :) I think I worked my baby a little too hard! :)

Video:

Today we went to OT (occupational therapy) and got Laelia’s splints fixed and adjusted. It was long overdue.  Actually when I was getting Laelia from preschool to take her to the OT appointment, the principal stopped me to show me a  paper with  my  Philadelphia doctor’s notes on it. It was a prescription to weight bear.  The school PT consultant said they needed that prescription to weight bear in order to get permission to borrow the gait trainer for the classroom. Well the principal wanted to know if she could ignore it! “We’re not going to do this, ‘…two times per day weight bearing…’ stuff. You do that at home right? Do I have your permission to ignore it?” I said I didn’t have time to talk (even though I had already said that but still ended up reading the whole paper), and ran out the door (late)  just feeling bad about it. I mean I want the teacher to have freedom in her classroom, and I want it to be easy on everyone. But I don’t want this attitude up front. It made me want to change my stance and make them do it! It would be wonderful if they stuck her knees  on that pillow she uses for nap time and she could be on her knees for story time or whatever. How hard is that? She has so much therapy… I would love the help! I just kinda felt ambushed. So later on when I’m in the OT parking lot and I get another call from the school, only this time from the immersion teacher about something totally out of left field (my husband had asked the bus driver how Lali was doing pain-wise on the bus, he said he’d tell her aide that Lali was in pain, okay thanks, then it became a “communication” error on our part since we need to address the aide directly, but we weren’t really talking to the aide nor did we know the bus driver talking to her was a bad thing, so now we need  a special book to be kept in Lali’s backpack for when we want to ask them questions, blah blah blah)… it just destroyed whatever emotional reserves I had left. I had already left work that day ten minutes late because of something stupid… now I’m late for OT… now I’m just angry. Charley too, which is rare.  Not good anger either. Awful, impotent, bitter anger.

So tonight I’m just tired, in back pain and I’m angry. Hopefully Dad and Christina can come tomorrow and give me a much-needed break. CCS is also tomorrow. Fine. Let’s do this.