We won!

Isn’t it beautiful?

So yellow and pretty!

I started squealing when I saw it rounding the corner.

“IT’S THE BUS!!!”

Neighbors must think I’m nuts.

So I have to say that starting a war with the school system is like banging your head against a wall over and over and over adn veovl anleiafl kaslierjaoj. Yeah like that. Sometimes you just get a headache. But this time we won! We got our school bus! And, yes, my daughter takes up two seats on the bus: one for her gait trainer and one for herself. Guess what percentage of seats that is. Give up? Two freakin’ thirds. That’s right, the two seats they didn’t want her to take up were finally wasted on her. She arrived home in the bus with ONE OTHER CHILD. *bang bang bang*

Apparently she tells me there were a whopping TWO other children on the bus in the morning.

So, UGH. I mean YAY! But also UGH. I was hoping I could fights some righteous battle that would usher in a smoother road for other parents in my situation and make everyone involved see the light of day. But in reality, in the San Diego Unified School District’s reality, you just fight every time they tell you no. Then you wait for almost two weeks while you sacrifice your work hours and sanity until they realize that you won’t just disappear. Well, according to the bus guy, parents do just disappear. It happens. They don’t want to fight. Or they feel they can’t without losing services or being treated badly. And I don’t blame them. I know of one other family who were denied bus service so they drive their kid to school everyday. They know it’s not right (it’s illegal), but they do it because they love the school and are thankful for it. And we are too. We love Head Start, the program and the people in our school, and we are so thankful for it. But I still fight these battles. Because I love pain. Bring it.

And why is information sharing so ridiculously hard for SDUSD?  I just recently learned that “Fred” was really “Willie.” So I took out the references to Fred in the last two blog posts and changed them to Willie. My daughter was even calling him Fred! How did we get Fred’s business card??? Anyway, we got the royal run-around and ended up speaking to five people total in the transportation department. Even when I finally reached the main guy who made decisions, HE EVEN TRIED TO HAND ME OFF TO SOMEONE!

And let me just say that we would not have even gotten as far as we did without our SEEC coordinator, Sue. She ended up calling everyone I did, multiple times. And she at one point yelled, “No, we need to solve this now! Do you want the mom to lose her job? Do you want to drag this out?!” Or something along those lines. She showed up at our front door at 7:00 a.m. with three other professionals on Wednesday to spend 40 minutes figuring out what bus Laelia would be on and how the bus driver would work things out.

I’m so glad it finally worked out. But I’ll admit it, I’m mad.

But Laelia is so happy. She’s riding the bus with her friends. She feels like a legitimate part of the school system. She feels like she belongs. And we all love her bus drivers. But as for the “system”…

Screw you bus people.

Laelia can now knee walk!!! She took her first steps (on her knees) on 8/15/11!!!

So amazing!!!

I had doctors tell me when she was born that she would never walk. We fired them!

Now we fly to Philadelphia for the best doctor: Dr. van Bosse!!!

Laelia can knee walk!!!

They said NEVER! Ooooooooooh!! They gave up on a baby!! Grrrrrrrr! She’s going to dance on their desks one day. DANCE I SAY!

This demands a celebration so we’re going to have a party! Details pending. Everyone’s invited!

Here are four videos because I went a bit video crazy. (I’m crying in the background for some of these. Please ignore. :’))

Eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!

Laelia likes to walk!

Laelia goes boom.

We took this one for Daddy.

Laelia sets a goal and then walks towards it! Love this!!!

So sometimes my daughter just amazes me. Just knocks me back! Two weeks ago it was while driving home from physical and occupational therapy. I told her that she earned three animal crackers for her good behavior. (Three because she’s three years old.) She said she earned five. (Five because her imaginary friend is five and he was good too.) We went back and forth a bit–three, five, three, five–and finally Laelia says, “How about three AND five! Then I get eight!” And I said, “No, when Mama says three… wait, did you just do math?!” The way I said it must have been funny because Laelia fell into a fit of giggles. And even though I was driving on the freeway at the time, I just had to call my husband at work to tell him.

But smarts aside (because I could go on and on), Laelia’s physical abilities are really taking off too! On Thursday (August 4th) I had the hardest day. It consisted of getting up at 5:00 a.m. to go to work, getting off work and picking Laelia up from school, doing occupational therapy with Karly, then doing physical therapy with Michele, then driving to drop off a prescription for KAFOs at Johnson Orthopedic (that I had to get redone by a California doctor since my Philadelphia doctor had originally done the script), then getting an appointment with Larry Johnson for brace measuring and discussion (casting for the brace is waiting on insurance), then racing to my doctor’s office for my lab work before they closed, then getting home and putting Laelia down for a nap and then waking her up in the middle of said nap in time for our National Seating and Mobility rep to show up. He measured Laelia for her Kid Walk in our kitchen while she cried for sleep the whole time! *whew*

I was cuddling Little Screamers on the couch when my husband got home and asked, all excited, “Where is it?!”

“Where is what?” My brain was back two or three medical appointments ago and then it hit me: WE HAVE A KID WALK!

Ooooooooooooh Ahhhhhhhhhhhh

If you were wondering what Laelia was using to get around at Penny’s party (see pictures below), it was a Kid Walk! We have wanted a Kid Walk for a long time now. A lot of our friends helped us research it too. The problem was that it was $3,000. But our former physical therapist started the process of getting one approved through insurance while we were still going to the south MTU (medical therapy unit). It went like this: CCS –> Laelia’s pediatrician –> Insurance –> National Seating –> Laelia! And each step took begging, pleading, demanding and holding someone’s hand as they did their job. Or maybe I’m exaggerating. It just took a long time. But, boy! It was worth it!

The reason Laelia is adapting well to the Kid Walk is because she’s had a wheelchair for a month now. And how we got the wheelchair was a total blessing! (Stop me if you’ve heard this one.) At the beginning of August we rented a wheelchair for our trip to Kansas City. It was $30 for the whole week. Laelia loved it and it gave her so much independence!  But when the wheelchair rental guy didn’t show up to pick it up, and it had been over our week, I started to worry we’d be charged more. So I was texting and calling him daily to figure out a time for him to take the darn thing back. That Sunday we took the chair to church since we still had it. A lady commented on how well Lali maneuvered in it, and I said, “Yeah I wish we could keep it.” The lady responded, “I’ll pray specifically about this.” (And I was a little surprised by this response. I know we were at church, but most people would have just offered some sympathy!) Three hours later I was still texting the rental guy, but he couldn’t get it that day either. Finally I just asked, “How much would it cost to buy it off you and save you the trip down to San Diego?” I got a reply really fast, “$100 and it’s yours.” That was the cost of renting it for just a month! Now it’s ours forever! And Laelia has been Little Miss Independent ever since! I want to find that church lady and ask her to pray for a million dollars next.

And I know what you’re thinking: ‘But isn’t the Kid Walk just a wheelchair?’ A Kid Walk is actually a gait trainer; meaning the child is suspended in a seat, not standing on her legs like in a walker, and not sitting in a seat like in a wheelchair. It’s something in between. Her feet are on the ground and she can use them to propel her forward. After having Laelia’s wheelchair for so long, the Kid Walk wheels were a breeze for her to master. In fact we had to keep reminding her to use her feet and not her hands! But she’s doing great! And she’s upright!

We took the kid and the Kid Walk to Target for a couple hours so she could practice running into the aisles walking. Two older ladies actually thought this was one of those child leashes. It was something about the way I was holding the handle bar in the back. Laelia has a leg difference (bone length and contractures make one leg two centimeters or so longer than the other) so if I’m not holding the handle then she veers off to the left. One of the ladies actually dragged her friend back to see the child in the “harness and cage.” At first I thought she was joking, but the more I think back on it, I don’t think she was. She kept saying things like, “So this way the kid can’t get close enough to the aisles to grab stuff off them!” And, “That’s one way to keep your kid in check!” I can’t make this stuff up. Another lady started petting my daughter’s head and cooing. Laelia just said, “You’re a nice friend, but I’m just walking.” Later she told me, “That friend who was nice was walking just like me.” She said it in a confused tone of voice, like, So why was she so weird about it?!

We’re going to get a wedge attached to Laelia’s shoe next week that may help her walk straighter. That way I don’t have to hold the handle to her child-cage.

Maybe a psychologist could explain away this feeling I’m having, but it’s a great feeling. I mean, I have a child who is upright! I left her in Sunday School last week standing at a play table with other children! She stood at the little play kitchen in the corner of the room too! She “ran” into the road when I was struggling with some bags last week and I was terrified! “Don’t you know better than to run into the road?!” I asked, horrified. Then I realized that I had NEVER taught her NOT to run into the road. So after that I had a great time teaching my daughter to look both ways, not to run off without me, to stay where I can see her, to hold my hand when we’re in the street and to not run into strangers. I felt like a new parent–a parent of an ambulating child! I always wondered what this would feel like.

So here are some videos of Laelia walking in her Kid Walk. She’s getting better all the time and I’m sure I’ll post more videos.

Penny helping!

David helping!

Just feet!

Home again home again jiggidy jig! Let’s not go anywhere for a while, shall we? I have three suitcases with scattered contents migrating outward across my floor. Each has at least one scavenger cat all over it. My house could be the stage for a disaster movie.

Three weeks ago Laelia and I flew out to Kansas City for the AMC Convention. Well last week it was Daddy’s turn so he and Lali flew out to Philadelphia for a check up and x-ray appointment. (Did I mention that all of our flights were free? Besides one AMC clinic in Seattle, all of our medical travel since Laelia was born has been covered! Woot!) This is the first Philly trip I have not attended. I kept having to tell myself it was just a check up. And it was just a check up. And I did figure out how to micromanage the entire trip long distance. Hehe. But still. Leaving Laelia with her daddy is a terrifying experience for me. Not that he’s not super responsible and smart… he is, but he’s also a space cadet. Every other phone call went something like this.

Him: “We arrived safely in Philly! Now where are the directions to the Ronald McDonald House?”

Me: “Um, what’s the ONE thing I asked you to print out because we don’t have a printer?”

Him: “Directions.”

Me: “And didn’t I call you to remind you at work to do that before you came home?”

Him: “Yeah, but where are they?”

…

Or,

Him: “Well we got a ride to the grocery store because, besides other things, Laelia just really wanted some animal crackers and kept asking for them.”

Me: “She went through the entire giant bag of animal crackers I sent you with already?!!”

Him: “Oh this bag marked, ‘Snacks’? Yeah I see it now. Oh this would have been helpful on the plane. Whoa, look at all these animal crackers!”

…

Add to that the fact that I did all the packing, compiled all the medical questions, safety pinned all of Laelia’s outfits together because matching colors on little girls’ clothes confuses the poor man… well, *sigh* anyway.

So where was I? I was busy seeing my brand new nephew! So I flew up north to visit family in Placerville. I’m an aunt now! Yay me! And my sister and her husband are first time parents! So yay them too I guess.

I didn’t have much time, but I made myself busy by visiting family, losing money at the new casino down the road (that my dad won back because Christina is lucky and I’m not), taking a three hour walk and coming home with my pockets so full of rocks that I couldn’t clean them out in time to answer my buried cell phone, cleaning my sister’s bathrooms and floors, making and eating ham sandwiches, ham with corn, ham with ham, more ham and ham with ham on ham, losing to my sister at Doctor Mario… a lot (you haven’t heard my excuses yet!) and playing and cuddling little Levi. Here are some pictures courtesy of my sister since my camera went to camera heaven.

Levi with his favorite aunt: ME!!!!

Teaching Levi to make faces.

And here’s the fish face!

Note the family resemblance?

Here’s Laelia at Levi’s age. Parents should keep their children’s cheeks away from me, apparently.

And while I was busy back home, Laelia was in Philly!

Laelia and Ronald and Ryan

Of course they ran into Laelia’s future husband, Ryan. He practically stalks her, you know. Daddy and Lali actually stayed at the Ronald McDonald House in Camden, New Jersey this time and just commuted to Philly for their appointment. Their room was Harry Potter-themed–from broomsticks on the walls, Harry Potter books on the shelves and posters or life-size cutouts of the characters everywhere. Each wall was painted a different Hogwarts color with a corresponding banner: Gryffindor, Slytherin, Ravenclaw or Hufflepuff. It was awesome. Actually every room at Camden’s RMDH is themed. The room they almost stayed in was 70s tie-dyed themed. There’s even a Sponge Bob room!

While in New Jersey, Kiersten and Ryan took them to eat real pizza. Jersey style!

“Now that I’ve had my Jersey pizza, I want my Snooki tan!”

They saw the doctors and therapists on Friday for Dr. van Bosse’s AMC clinic. Laelia got her x-rays (lookin’ good!), some extra padding for her shoes and some magic pony toys (that my cats are always trying to swallow and kill themselves with). The physical therapist said to do more tummy time (like a baby?), hydrotherapy (I’ve called them but haven’t heard back yet), hippotherapy (called them and heard back… $25 a session?!!!??!!) and more physical therapy everyday. I’m not sure how we’re going to fit this all in. It’s a lot. A LOT. Let’s just say I’m going to look for stay-at-home jobs now.

And we’re adding new hip stretches to the daily routine. Because we didn’t have enough stretches. Yay.  o_O

Then there’s the stressful paperwork dramas that must now take place. We are suppose to get KAFOs but we have to get the script from a local doc (Philly docs don’t count in California) and then send that to insurance, and then to the orthopedist, so it will take months I’m sure. And we’re suppose to start using her Kid Walk, but I can’t figure out what happened between steps 5 and 6 (better known as between the insurance auth step and the manufacturer step). We also got the go-ahead to do E-Stim, although I have no idea how to find out anything about that… and it’s low on my list.

We also have a surgery date of November 8th. They want us to fly to Philly a week or two before that to do intense, daily out-patient physical therapy. After those weeks of hard work and the concluding surgery we’ll have a better idea of what to try next.

And since lots of people have asked about the surgery, let me back up. Last November Laelia had her bones, between the hips and femurs, cut through and rotated and then screwed back together like this:

So these screws or pins or clamps (I’ve heard them referred to as all three) need to come out. Then we’ll have to start over with PT. Ugh. Well in a way she’ll be learning to do everything she does now only with her actual hardware and not the metal hardware we added. Osteoporosis is a major concern for AMC’ers, so the more weight we can put through those legs now, the better. We already have her on a high protein and calcium diet which I think is helping. Or at least it’s SOMETHING. She eats eggs and peanut butter sandwiches and protein (“chocolate milk”) shakes for her muscles, and she eats yogurt and supplements (gummy vits) and other things with calcium in them for her bones. I know kids who have bones break just from the lack of weight bearing just from the amyoplasia (which she has) so I’m hopeful we’ll escape that fate.

In other news we started physical therapy with new therapists today (Tuesday). The bad news was that we were (read: I was) so desperate for a camera that we tried to get one for cheapo off Craigslist and ended up driving to Spring Valley to pick it up. And that’s where our car stayed. Bad alternator. Just great. So we had to bum a ride to PT and then wait over an hour for a ride home. But I like our therapists and think we’re doing the right thing.

It’s so weird getting new therapists. Every year and every new therapist, we get a new evaluation. And my brain knows that these exercises are to test where Laelia is now, and not a test that she’s failing. But still my heart has not wrapped around the idea that we’re not failing when, you know, we fail. So instead of hearing what the therapist actually says, “Looks like she’s a little weak here, let’s make it a goal this year to work on it!” I hear, ”Well Laelia FAILED the physical test. No A+ for her. BAD PARENTING!” Okay not really, but I have to make an effort to change my thought process here. After the tests Laelia looks at me waiting to see my reactions (because she’s hella smart) and I have to mean it when I tell her how good she did. She lights up like the Fourth of July when she hears she’s done well. A+ for Laelia!

Well we just got back from picking up the dead car in Spring Valley. We now also have a camera we got on the cheap! Don’t know if it works yet. It came without batteries or memory cards or anything. *crosses fingers*

There’s lots more to say but I’m tired. Charley keeps telling me cute Laelia stories from his trip to Philly, but I told him he’d have to blog about it himself. I’m going to eat my weight in food since I have to fast tomorrow (feel sorry for my coworkers) for a blood test.

Ooh left over pasta! Bye!

Wanna know how I got up here? Watch the videos below and see!

I’m just going to post them all. You asked for it!

Whew! What a work out. I’m worn out.

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.

Kisses and secrets!

Can I have some?

Pictures of the going away lunch for Adam and Chelsea as they head to Tanzania in twelve days.

We’ve been super busy lately. I had a frustrating experience today with Children’s Hospital and their scheduler. Charley and I both. Ugh. They may call back tomorrow. So moving on.

Today I called CCS to ask how things were going. I think my contact forgot that she was suppose to call me, because she sounded surprised to hear from me. Evidentally she had forwarded our packet to San Diego South’s Medical Therapy Unit. So I got their number and left a message on their weird answering machine that didn’t have a greeting. Feeling weird about that, I called back later and got someone who asked if I was getting services for a tramatic event. (Oh those poor babies!) I told her that Lali had been diagnosed at birth. She was surprised that we hadn’t done orientation yet so she said they would call me back tomorrow and set up an orientation. Then she mentioned that if it was more urgent (like a tramatic event) they’d also try to work out an evaluation. I quickly mentioned we had had surgery and gotten casts off on January 7th and she said, “Oh! She had surgery? When?! Well we need to move faster! Let’s do the eval the same day.” Finally! I’m just relieved to be moving forward with an actual person who knows our situation!

I seriously don’t know how shy parents get these services. I feel like I’ve had to hassle every single person in this organization so far. I mean, I’m a nice bully.  I’m sure they didn’t set up this system to make parents in hard situations have to go through this much hassle to help their children.

Today we also went to Laelia’s second ever chiropractor appointment. It’s so wonderful. She loves it so much! She tells the doctor when something feels good, and it all feels good. I set her on the table and she immediately laid down on her tummy, put her head down and took a deep breath. So cute! Plus the doctor tells me she is the smartest, most well-behaved kid he’s ever seen. Love it!

Today I also contacted Laelia’s pediatrician’s office to get a referral to Johnson Orthopedic. It’s slow going, but eventually we may get this AFO fixed. I followed up with CPMG after we’d gotten home today and they were closed. Grrrr. I really hope between my work schedule, Laelia’s school schedule, doing a CCS orientation and evaluation and working this out with insurance that we can fit in an orthopedic trip tomorrow. I think it’s wishful thinking. Wednesday we have a PT coming to our home who is paid out of pocket (as opposed to going through insurance) so we don’t cheat CCS. I’m hoping she’ll give us a few more ideas that we can do at home! I’m thrilled that she’s coming to us! Thursday we have an occupational therapy appointment with the best hand therapist in the world, Jill Peck-Murray, to get Laelia’s splints adjusted. Friday we have another chiropractor appointment and also my dad and Christina are coming to visit! Then after a weekend of fun with them, we’re all going to Disneyland on Monday!

I really need to clean. No time.

Tonight Laelia’s stretches were easier. Maybe it’s the fact that I do them every hour or so instead of once a day now. Laelia was even able to count down the 30 seconds out loud with me instead of just screaming the whole time. It’s just very nice. 

We also have the dorsilflection straps on her left AFO up to the line! That means it’s on correctly! Twenty-four days after we got them and I have one stupid shoe on correctly. Hurrah! :)

Okay the correct AFO lasted exactly 19 minutes. She just screamed her head off and it’s far enough past her bedtime that I loosened it. Still, we’re getting there.

My throat is still sore and my back hurts, but I’m doing much better physically. My vertigo episodes are down to maybe two a day and that’s it. Also Laelia’s sore (crater) looks better I think. It doesn’t bleed as much so I think that means it’s closing up.

Our new rule about only watching cartoons while actively weight bearing is working beautifully. I’m thrilled with this. Laelia will even tell me, “Mama you need to pause Blues Clues. I need a break.” But while waiting for the chiropractor there was a television playing and Laelia had to point that out while grinning like she was cheating the system.

So things are better. Now I need some sleep.

We’re so tired all the time lately that I just broke down crying in front of a group of people I don’t know this morning. Thankfully they were wonderfully sympathetic. Laelia’s foot issue is worse. In fact I’ve decided to include some images of her foot that are disturbing so maybe you’ll want to hide the monitor from younger viewers before scrolling down. Her AFO (ankle foot orthotic, aka “special shoe”) on the right foot has caused a crater that just gushes blood, making it unwearable.

That spot was getting worse and worse, and we were trying everything we knew to keep the foot in the AFO (and keep it from re-clubbing). But nothing worked: not band-aids, “working” the straps, a cotton ball between the sore spot and strap, putting the strap as low as we could off the sore spot–nothing. So finally after the blood gyser last night, we gave up and left the darn AFO off her all night. It was the first full night’s sleep she’s had since January 7th. I wish I could say the same for us, but we were up worrying about bleeding issues, re-clubbing issues and dealing with guilt. With regular clubfeet we wouldn’t worry, but an arthrogryposis clubfoot likes to curl up very easily. They are the most stubborn feet! And we need that AFO to avoid surgery!

As you can see in the above pictures I put her back in her old AFO today that doesn’t do much for her and is too small, but it’s better than nothing. There’s a hard piece of plastic between her foot and the strap on the old shoe so it doesn’t hurt that area as much. We are going to try and meet with Laelia’s busy pediatrician tomorrow (Monday the 31st) so we can get a referral to an orthotics company ASAP and try and “fix” the AFO. Her AFOs were made in Philadelphia so it’s not like we can march over there and demand they fix them. (PS: I had found the old AFO in my unpacked bag I had taken to Philadelphia. I haven’t found the time to unpack in almost three weeks!)

In other news, CCS has not moved an inch on our PT appointments. They have just sat on our paperwork with their thumb up a delicate part of their anatomy. I’m sick of this. We are waiting for no reason! I would fight this tooth and nail and make a big stink if I knew how much longer it would take, but they won’t give me any idea! I would just hate to complain and then have them call me the next day saying they were done. But it’s getting ridiculous waiting for people to just stamp an approval on our case. We already know we qualify for their medical therapy program based solely on our diagnosis! So why has this been so hard? And it was suppose to have been rushed since she got out of casts three weeks ago!!! And she was suppose to have been getting physical therapy two times a week for the last three weeks! So frustrating!!!

Since CCS are punks, we have had to try and push our insurance to move faster. Our case manager, Gretchen, never returned my calls. Ever. Thanks Gretchen. But thankfully we got a new case manager through CPMG named Stacy. My husband likes to say, “The best thing about Stacy is that she answers the phone!”  But actually we like Stacy for more than just that. While I was down with a bad cold and sore throat, Charley took up my job of calling and bugging people. He reached Stacy and they spoke on the phone for over an hour! Incredible! She gave us ideas about how to work the system to get Laelia’s AFO fixed, and she seemed to understand how important this all was. Finally someone helpful! Prayer answered. Stacy even gave us our much needed PT authorization!  Then Charley immediately called Children’s Hospital who only has one scheduler person who doesn’t work Fridays!! Ugggggggh. So we finally have auth, but still not PT. Hopefully soon.

While Charley was on the phone with Stacy, Laelia was rubbing my foot to comfort me since I was miserably sick. She’s a total sweetheart and just cares so much for people! Then she started “reading” me stories. At one point she said, “Mama, I’ll read you a God story.” Then she grabbed my Bible off the coffee table and held it in front of her upside-down, opened to the middle, and began, ”Once upon a time there were three little pigs and a big bad wolf.”  Best Bible story ever!

Laelia is adorable. Even when she’s in pain she’s adorable. On Saturday we went to get our family picture professionally taken for the first time ever. I knew Laelia was in pain so I told her I had a present for her (small thing of bubbles) if she could last the outing with a good attitude. When she’s in pain the slightest thing can set her off. (I’m the same way.) So when she was playing with a picture sample and it got taken away she started to act up. But then immediately as if by magic she changed her tone and apologized to the people nearby. Right as they were praising my parenting she added, “Now where’s my present?”   

She was also a good girl during her first ever chiropractor appointment on Thursday! We’re trying to see if working her spine will allow her more range of motion or strong, more stable movements. The chiropractor loves her because she follows all his directions perfectly. She laid her head down on the table and took deep breathes as he pressed down on her lower back. I thought she’d throw a fit since he was a doctor and he was touching her, but I think his blue jeans and great voice (better than Ted Williams!) put her at ease. It looked relaxing! Charley and I found ourselves watching this happen while holding hands and grinning. I didn’t know my wiggle worm would enjoy that so much!  Because she was so great she got to pick the dinner of her choice. She chose Apple Jacks cereal dipped in ketchup. And that’s the last time she’ll ever get that deal.

Also, and this is exciting for me, we have a new rule in our home! The rule states that there will be no more watching TV or movies of any kind unless doing active weight bearing at the same time. (The rule does not apply to adults or Saturday mornings when adults want to sleep in. ) So far this rule is proving to be a great encouragement during physical therapy. Backyardigans and Blues Clues and KPBS shows are even more enjoyable when you’re earning them! Plus she doesn’t overdose on TV this way since she can’t watch much while weight bearing. But even simple weight bearing (like sitting on a ball with Mama holding her hips) counts, so she can last a whole show. It’s working really well!

Also we received a gift from our dear friends to pay for private PT out of pocket until CCS does the right thing. The same friends also put us in touch with a friend of theirs who is a PT, and that friend put us in touch with a closer PT who will most likely be doing the therapy soon. I’ll call her tomorrow. It has meant so much to me. I’m so blown away by people’s generosity.

Another example of generosity is that for Jewels for Jared, our friends and family bought bracelets to support baby Jared and had them sent to Laelia in her size! She has thirteen (!!!) $5 bracelets that you all gave her! She earns them during PT exercises. Thanks so much! Not only did you guys support Jared’s medical expenses, but you also supported Laelia’s physical therapy too! Bracelets are great motivation to finish a 30 second push up!

Okay we just put Laelia down for the night and it sounds like she’s sleeping. No screaming. I hope it lasts. We have to do Laelia’s foot stretches every hour during the day since her AFO is not doing the work for us. The stretches have gotten easier, not because she cries less, but more because we’re getting used to it. I’m relieved that my baby’s cries no longer kill a part of me, but at the same time I’m not thrilled about being callused in that way.

So much is still up in the air right now. Where we’ll be living, how she’ll go to preschool in pain, what to do with my job and how to deal with her right foot are just a few of the unknowns right now. We’re hanging in there though. Life with arthrogryposis is sometimes hard, but this girl has brought so much joy to our lives. I mean it. I wouldn’t mind having another one with the same condition. Charley hears this and thinks I’ve gone mad.

Here are some of the exercises we’ve been doing at home recently. (Disclaimer: Yes she has a bad haircut. Yes I did it. Yes I’ve been thoroughly lectured. )

Standing without her casts is much harder. She can do it for three minutes, but she gets REALLY shaky. She cries through it all, but she’s getting stronger.

So after my daughter’s PT exercises last night and during her daily massage I THINK I’m pretty sure I felt a quadricep! So I checked the other leg and I think I felt a little hard something there too! TAKE THAT AMYOPLASIA!!!! I quickly added quad stretches to the regime while singing a happy song. (Do de do.) Quaddy quad quads! (Lack of sleep is making me kinda silly.) *GRIN*

For balance she sits on a ball. I’m always right there with her, except she wanted the picture by herself.

Weight bearing through her knees.

Weight bearing through her feet (still on the ball). She’s saying, “Come on Pooh Bear, do your exercises.” Precious!

VIDEO TIME!

Tonight I taught Charley how to do Laelia’s PT exercises. My back has been really bothering me so I was very grateful for the help! Rocking back and forth strengthens her core and sitting with her feet on the floor then leaning forward puts weight through her feet.

Here’s Laelia going down the stairs. By request.

Here’s Laelia’s daily push up and what that looks like.

And I’ve saved the best for last. Here is Laelia doing weight bearing on her knees! For the last two weeks she just cried through this, but today she just happily watched her cartoon. All I had to do was pause it whenever she took a break and that was all the encouragement she needed to keep going! She even dances! So much improvement, it’s hard to believe this is the kid they said would never stand!

We also (not pictured) have stretches for every joint in her fingers, her shoulders, neck, wrists, elbows, knees, feet, etc. And there’s a great half kneel PT exercise that is really helping her stretch out her quad while putting weight through her foot. And all of these ideas I got from an evaluation appointment that bypassed our insurance! We still cannot get physical therapy through any organization out there. CCS has not even evaluated us yet, and our application with them is still pending, which is not cool. Shriners in LA is the same story. I’m just so thankful our local PT was able to share so much knowledge with us in a short time. Thanks Sylvia!

Yes I bought my daughter a doughnut today. If you had to have these stretches and exercises everyday then I’d buy you one too.

And maybe I just so happened to buy TWO for myself. If you had to stretch and exercise this little darling everyday then I’d buy you TWO too.

Thank you for participating in my self justification. Now don’t ask about the Snickers bar…

PT went really well last night! We walked away with a whole page of typed out exercises for PTing (word I made up) at home! *sigh of relief* I am finally less desperate and stressed. I’m so thankful this worked out! And I’m so amazed it worked out too! Especially after being told no!

Because of some pain issues, Laelia’s not quite able to do everything on the list, but I can finally write out daily goals and work on them at home! You should hear how thrilled she is about all this. “Please Mama, nooooooooo! No push up. No more stretches. I tired. Cuddle me. Pleeeease!”  This is when a good Mama would cuddle her, but I usually demand one more modified push up.

We showed up half an hour early for PT, filled out a ton of paperwork we’d already filled out and lamented that we couldn’t also have an OT appointment (because now we’re spoiled). We did the full evaluation plus some good old-fashion PT (shhh, don’t tell my insurance) and walked out without paying a cent! We also returned all the different parts to Laelia’s gait trainer in a big garbage bag. It just made me realize that we’re closing a chapter in this stage of our lives. One I’m not sure will stay closed forever, but that largely depends on the quality of the CCS therapists.

I spoke with my contact at CCS who said that as of today all of the pieces of my application have been turned in and the whole thing is being considered for their medical therapy program. We have the qualifying condition for their therapy program so it should be automatic.  Should be, but nothing works that way here. I mean, seriously, we qualify based solely on our diagnosis, of which they have multiple documents proving she has said diagnosis, which means we’re waiting because…?  Uh huh. I guess the person deciding if Laelia is eligable has a large case load and does it on a first come first serve basis. But my contact, Melanie, has promised to call me as soon as she hears anything. And it does look like (although no guarantees) we’ll be getting our needed physical and occupational therapy from them before February. Maybe. (No promises.)

Shriners in LA will take three weeks to figure out that we’re already in their system! (Yay efficiency!) And they’ve requested a bunch of paperwork that I’ve already sent them before. They probably lost it; wouldn’t be the first time. (Shriners in Philly doesn’t have that problem.)

And my patient advocate at my insurance never called me back. In fact I have heard from her a grand total of zero times since starting this whole mess after Laelia’s casts came off on January 7th. And I’ve called repeatedly. Boo.

I will meet with my boss tomorrow to discuss some new hours for me to work around Laelia’s daily therapies at home and her commutes to therapies. Wish me luck.

And as far as Laelia’s poor feet (that hold up some of her therapy because of pain issues), we emailed new pictures of her feet to Dr. van Bosse last night who emailed us back this morning (speedy!) with an entire list of things to help her. I love that! He included steps to follow! Yay! Some of thing on his list are things we’re already doing, like putting another pad between the sore spot and the strap. Then there are things like “working” the strap (to soften in up) that I hadn’t thought of doing. We also have the go ahead to ease up on the dorsiflexion straps (the removable ones). We’ve actually already been loosening these, but now we can do it without the guilt trips. Or more accurately, Mama can keep loosening them without Daddy giving her guilt trips.  :)

Laelia is already happier. Her feet are happier too. And I guess it turns out that the ”swelling” of her feet is actually baby fat in the ankle getting displaced into the forefoot making it look swollen.  The doctor says it’s the ”Baby Beluga foot” that is common with this sort of bracing at Lali’s age.  So it won’t go down until she grows into her baby fat. If anyone can find compression socks sized for 2T-3T I would appreciate it. I can’t find any that tiny!

Today we used a Target e-gift card we’d received for Christmas (thanks Annita!) to buy a potty for Laelia that goes over our big toilet. (We had been saving the money for moving expenses but found out this week that the place we were moving to has some unexpected delays… that could be permanent. We’re now looking at other options.) I’m excited about the potty since the one we have doesn’t work for her. Laelia is already trained for going number two, but not number one. I’m ready to stop using our time restrains, her pain issues and all this jumping through hoops to get care/therapy as an excuse to not potty train this kid! Plus with the new position of her legs, she can now wear Pull-Ups! Have I mentioned that I love her new beautiful straight legs?

(Have I also mentioned that I’ll have to change her IEP to get them to carry her to a potty at school? *sigh*)

When I got the potty in the mail today it came with, I kid you not, a coupon for headache medicine! Ha! I’ll take it!

Oh and even though she’s not yet completely potty trained, she can change the ring tone on my phone and turn on Netflix using the X-Box. I can’t always figure out how to do those things, but I go potty all by myself so thbbbbbbb!

Kids and technology these days. It’s nutty. Times are changing. We were at a doctor’s appointment the other day and I gave Laelia my phone to play with. Well the doctor came in and asked, “Who are you gonna call?” AND MY KID DID NOT RESPOND WITH, “GHOST BUSTERS!”  How has the world changed so much?

But not all change in bad. Check out her legs!

And just for fun. Click here to see her crossing her new legs.

Then click here to compare how she used to cross her legs.

Love my chocolate-covered, un-potty-trained, ghost-busters-ignorant girl! No judgment!!!