My pretty girl.

Doctors told us ugly things.

Then we met this guy.

And started doing lots more PT.

And OT!

And proved them wrong.

Now we’re leaving this Sunday to fly to Philadelphia for knee surgery on February 1st.

Which means no more knee standing for a while.

And pretty girl goes back into casts.

And we’ll see lots of this face.

But in several months when all is said and done she’ll be able to do this:

(Photo credit.)

And *maybe* this:

(Photo credit.)

And why the heck not:

(Photo credit.)

Well, okay she’ll be able to walk better and have straighter legs.

Did I mention we leave this Sunday?!?!!

We need this:

(Photo credit.)

(But I’m tempted to make that last picture someone sleeping with chocolate in one hand and heavy medication in the other. )

Hey everyone. I just cuddled my daughter and put her in bed. She’s happy and healthy right now. I miss her already and wish she wasn’t sleeping. I’m tempted to sneak into her room (it’s midnight) and wrap her up in my arms.

In three weeks she’s having surgery. And from everything I’m hearing it will be hard surgery. I just spoke with two moms tonight that regret having put their children through the surgery, not because it didn’t help, but because of the pain issues. It left me feeling awful.

Please pray for us. Pray the pain issues are under control for the next year. Pray that these pain issues don’t make my husband into a shell of a person. His little girl has him wrapped around her finger, and I’m strong enough until my husband crumples. Pray for the three days after our February 1st surgery. Those are the hardest. Then pray that the months afterwards will be okay as the plates and screws in her knees do their job. Pray for healing and that the whole thing is worth it. We can’t leave her like this–she needs those knees straight. But I’m scared.

Thank you.

Many of you know that our next surgery is going to be on Laelia’s knees. Well now it looks like we are officially scheduled for it, and it will happen earlier than we first anticipated. It’s now February 1st with a follow up in early March.

So if you missed it: Knee surgery is FEBRUARY 1st! Yeah I know! We pack up to leave just a few weeks after Christmas! (Just breathe.)

This surgery is going to be much harder than her last one (which was cake). I want to explain it clearly so you all know what’s coming. I’m even open to questions. Just from writing this post I thought of a few myself and have emailed Laelia’s doctor.

But first, why this surgery? Laelia was born with arthrogryposis (joint contractures making her joints stuck). Her knees came out of the womb in flextion (meaning bent, opposite of extension, meaning straight) and bloody from rubbing against my internal organs for months of my pregnancy. We’ve stretched them for four years, casted them and put them in stretching KAFOs. We did a pretty good job too. She was born so bent that her feet touched her thighs and now she’s pretty straight. If her legs had stayed as bent as they were without all our intervention we would have put Laelia in external fixators. (And I know families who have done extensive therapy on the knees and still had to do that option.) (And yes that link for external fixators is just a Google search. ) But because she’s now at less than 40 degrees of flextion in both knees (closer to 25 actually!), she instead will get (I don’t yet know how many) releases and then two eight plates inserted for each knee. These plates will stay in and encourage her legs to grow straight over time. It’s a process called “guided growth,” and it’s shown specifically to help kids with neuromuscular conditions like Laelia’s arthrogryposis.

The plates are drilled into the bone to be removed at a later date. We just got her hip pins out and now she gets more hardware in her bones! Yippie hurray (sarcasm).

The surgery is five hours long. She’ll be in full casts for a month followed by full leg braces to be worn 24/7 for a few weeks after that. There will be hard daily therapy in there too. That’s about six weeks of HARD (“hard” being a noun here). Six weeks of struggle and adjustment. She’ll be out of school for over half of that. Around mid March or early April she should be pain/discomfort free depending on the braces.

This is the surgery she was going to have around her next (fifth) birthday in October. Because it’s now in February this most likely means she will not have a surgery next year on or around her birthday for the first time in her life! She can actually age without consequence this next year!

With another surgery looming and the last one so fresh in our child’s mind we’ve had a few long conversations about surgery. It is always amazing to me to hear Laelia’s own perspective on something. For example I know she hates having her blood pressure taken. She says, “I don’t like when the cuff hugs my arm.” So every time they get the darn blood pressure cuff out (which is a stinkin’ lot after surgery!) she starts to cry and then she requires I hold her hand. Well she started talking about the time they took her blood pressure twice. I remember this–I was there, but my version of it is so different it’s funny. A nurse came in and wanted Laelia’s insurance card so she could go pick up our medicine for us (which was really sweet of her). I let go of Laelia’s hand in the confusion and didn’t realize that the cuff had not worked and they had to do it again. In the time it took me to walk to my purse and fish around for the card, they had already taken her blood pressure again. Laelia was fine and I wouldn’t have known it happened except for the nurse told me. Since blood pressure cuffs don’t terrify *me* and since it was already over and she was fine I assumed it was no big deal. But even though it was pain free and I was two feet away, Laelia tells a story of triumphant bravery in the face of extreme torture all alone and abandoned. It’s pretty adorable when her eyes light up and she says, “And Mommy goed away! And they did it again! Again! And the cuff was lower on my arm. And I was a big brave girl! And I was all by myself. And Mommy didn’t hold my hand!” I couldn’t help but squeeze and kiss her over and over as she told her story. Mama’s big brave girl got ice cream.

Well we don’t bring up surgery with our daughter for fun, but because I want Laelia to have a voice in decisions about herself. Of course I always hope her decisions agree with mine and are therefore the “right” decisions. But after Laelia voiced her preference loud and clear we have decided not to give her sleepy juice for her next surgery. They give this to children (orally) to calm them down before the anesthesiologist carries them away from their parents. It makes them loopy and giggly and fearless. Sometimes I joke that it’s just pediatric whiskey. But without it Laelia may be terrified going back for surgery without me. But giving her a choice in this matter may also empower her to feel in control and get through recovery better. The sleepy juice is not necessary or mandatory, but just a good idea. But Laelia doesn’t take medicine well and it’s often forced down her throat. So Laelia asked me in a very mature way not to have to do it again. She explained how brave she is now after the blood pressure ordeal. I’ve explained the consequences of this choice, but she’s unwavering. It makes me very nervous.

Plus I’ll miss that little drunkard!

I have this list of things I would love if people prayed for regarding Laelia’s next surgery.

1. That Mommy can keep it together. We just did surgery (whine). Now we’re looking at two more trips to Philly and a hard surgery before our timeline. Ugggggggggggggggggh. She’s just now taking regular baths after her last surgery! She’s still in bandages! Don’t I get some sort of tropical vacation between surgeries? I remember that in the Mommy handbook somewhere…

2. That Laelia is once again first up for surgery that day instead of waiting and freaking out all day. (It all depends on the ages of the other children getting surgery that day. If Laelia is the youngest she’ll go first. If not then she may freak out all afternoon.)

3. That she can remain calm without her sleepy juice while carried through the double doors into surgery.

4. Pain management. Oh please oh please. And on a personal note for my marriage during pain difficulties. Laelia’s pain has a way of tearing at her parents’ hearts and making emotions raw. I think Charles would claw out his own eyes rather than let his daughter feel pain, even if it’s necessary and part of her therapy routine.

5. Casts–swelling, itching, painful, heavy, skin breakdown, fear of them slipping, pulling her legs, etc. A month of casts, followed by…

6. Leg braces worn 24/7 for weeks. This may be harder than casts, and I know she’ll beg us to remove them constantly. This is when life will get really hard. Also we live 3,000 miles away from the people making and adjusting the braces. So I hope they are done correctly the first time. And that will be a first and is unlikely.

7. Rest.

8. Peace. She’ll be scared.

9. Travel mercies. It’s two or three airplanes one way, and takes all day. Flying with a post-op child on pain meds is the worst.

10. Travel expenses. (Surgery itself will be covered by Shriners.)

11. And lastly, although it should be more important but it’s against my policy of living day to day, I ask that this surgery be successful. That her future walking is helped by this surgery. We’ve had a couple unnecessary surgeries before finding this surgeon that I’m still upset about. But I trust this guy. But just because it’s the best surgery from the best surgeon doesn’t guarantee success. I hope this helps her one day walk easily and without assistance. Although I realize that may never happen. I just pray it is the best for her.

Thanks so much!

Pout face.

I went to a Parental Readiness workshop and legal clinic the Saturday before last to meet with a lawyer about our school issues. When I signed up to go we had just been kicked off the bus schedule for being special. I learned a lot and have my work cut out for me.

I just have to say that our SEEC coordinator, Sue, and Laelia’s classroom aide, Rosie, are so wonderful. It takes good people to do what’s best for a child when it would be easier to ignore that child’s needs. I’m so lucky to have them both on Laelia’s team.

Right now Laelia is not allowed back at school until after we have a meeting with Neighborhood House’s health department since the next time Laelia attends school she will have had surgery on her legs. They want to assess her and determine if it’s in everyone’s best interests that she return to school. Our meeting is scheduled for November 7th (the Monday after we get back) with possible return to school as early as November 8th. And even though I can understand the reasons behind the meeting, it makes life hard. Emotionally I feel like she’s officially black-listed until we pass the tests, but thankfully I know more of the process and the people involved now. Last year was hard because it was clear to me that the director of the school didn’t want my daughter back. (And I wasn’t wrong–that school is no longer servied by SEEC and special needs kids are not welcome. Laelia was the last one there.) In my perfect world our meeting would be five minutes long, a couple of instructions and then school time. In other words it would be part of the process of going back to school instead of a roadblock that we must overcome to be allowed back at school. Once again I find myself trying to put just the right spin on it for Laelia not to feel unwanted or hurt. It helps when the adults involved genuinely like my daughter. I’m so thankful for that.

When I met with the lawyer I learned that a legal battle is the only cure for schools not following IEPs. It seems like there should be some middle step between no consequences for non-compliance and a lawsuit. And there’s no way if they want to kick her out of school illegally for it to be resolved quickly or without cost. So I’m happy to play by their rules unless and until it conflicts with the law. But I initiated the communication with the school, and my hopes are high. I plan on getting to know everyone working for (yes FOR) my daughter, including supervisors of supervisors. And I plan on attending every school meeting not in conflict with a surgery or doctor’s appointment.

That is part of the reason why I left my job. My last day was Friday. I worked in CSR for DSP for five years. I will start a new position from home the next business day after we arrive home from surgery. Why did I plan this huge life change around a surgery? What was I thinking?

Happy Birthday, Laelia!

Cake made by Grandma Christina.

It didn’t last long.

Laelia Sky was born at 1:27pm on October 3rd, 2007. She weighed 7lbs and 2 ounces. Her length was indeterminable, and they were unable to get a foot print for her birth certificate. She was diagnosed with arthrogryposis (amyoplasia) the next morning. I always relive those first days on her birthday.

Home from the hospital after a short extended stay.

Three weeks old with new casts.

Laelia is two months old and all four of her limbs are in casts.

Three months old and down to three casts.

First Christmas! This was right after her first tendon releases (minor surgeries). Down to two casts and two arm splints.

Laelia’s first birthday!

Laelia turns two. (We did not plan that well. She got two major surgeries two weeks apart for her birthday.)

Third birthday. (Surgery got moved to the next month so we could celebrate.)

Now my little one is four! (This year’s birthday surgery is next month.)

Okay I need to stop crying for thirty seconds so I can get through this silly birthday post. Why oh why did she have to turn four?! Part of me freaks out a little every time she gets a year older and still has not reached some gross motor goal. By her third birthday I was worried she wasn’t walking yet, and wondered if she ever would. (The walking party was so much fun!) Now at her fourth birthday I worry about potty training, bullies and if she’ll walk better. But I know that I just need to enjoy these moments with her now. I feel bad listing my fears and worries, especially when I should be celebrating, but it’s the honest truth. Birthdays are hard for me.

She’s growing up so quickly! Four years. Wow. Now I get it when people say they can’t believe how fast the time goes by. Other parents have told me that time flies by when they’re little, but when Laelia was little time just dragged by. I don’t know if that’s abnormal or not. But this last year, especially after she recovered from her osteotomies, time just flew by! Maybe because we had so much fun! We’ve had so many milestones reached and awesome conversations together this last year! She has mastered so much in the last six months alone! I kinda wish she could have stayed three forever.

Plus I’ll miss the look people have when they discover that the little girl who just quoted all those verses or did a math problem or had a whole intellectual conversation while pretending to be a kitty was only three years old.

To celebrate Laelia’s fourth birthday my car decided to have a flat tire. After that was resolved we decided to go to Home Depot to buy some soil and seeds so Laelia could watch them grow (like she’s growing) during this next year. The checkout lady gave her some free flowers because it was her birthday. It made her day!

We then ate lots of enchiladas and even more cake. I didn’t require Laelia wear her KAFOS for the required six hours of stretching on her birthday. (No tears on your birthday!) So it was a pretty relaxed day. I think we needed it. We’re leaving for Philadelphia in 19 days and her pin-removal surgery is in 29 days.

Laelia has grown up so much. She’s a young lady now–willful and spunky and strong. But when I look at her four-year old face while she’s arguing her way out of nap time, all I can see is this:

Happy birthday, my baby girl.

I’m so incredibly upset right now that I’m either going to take a nap or blog. And lying down with my eyes wide open as I literally hear my heartbeat in my eardrums is not working, so here I am a’ bloggin’.

Where to begin? Last Monday, September 19th, Laelia had her first day of school. Laelia waited at the curb on an unusually foggy morning for over an hour. The school bus never came.

After my husband made some phone calls a guy finally came, only no bus. He was Willie with Safety and Training with San Diego Unified School District’s Transportation Department, and he was there to see if we qualified for bus service since he heard we’d be using a new chair (by that he meant gait trainer which is a walker with a seat in it) that he was unfamiliar with.

Keep in mind that the fact we’d be using a Kid Walk, including describing what that was, was revealed in Laelia’s IEP three months ago. We had no idea no bus was coming or that we’d need to qualify for this. In fact we knew the transportation department was difficult (for lack of a better word), and had made sure three weeks earlier that we were set up with special needs bus service for a gait trainer.

Of course we did know that we would have to break down the Kid Walk for the bus driver. But we were still excepting a bus driver (in an actual bus) and not some sort of inspection.

Charley was totally caught off guard. In that one quick assessment we were denied because Laelia’s gait trainer breaks apart but does not collapse. And using a different special needs bus that transports equipment without breaking it down wouldn’t work because it would mean she would take up two spots: one for her seat and one to hold the gait trainer. And in this economy you don’t take up two spots.

In other words, San Diego Unified School District’s transportation policy is that the special needs bus only transports kids who can walk and therefore don’t need equipment or kids who have nonfunctional legs and therefore have equipment with seats they can ride in. Kids that are special, but are not too special. Kids that take up one seat and don’t need equipment that needs to be stored elsewhere. Although walkers and gait trainers should qualify under the law (ADA) for transportation, that is not the reality. And I can assume that any medical equipment that comes out when technology advances that is in the best interest of these kids will almost likely be denied for transportation service based on this experience. Goody.

For the last week we have had no bus service. Our contract hours with the school (Head Start) are 8:00 to 12:00. To say it’s a hardship to hold down a job and get our kid to and from school at those times is an understatement, especially when I commute twenty minutes to work one way. We have been talking a lot with our SEEC coordinator, Sue, who then met with her supervisor, Lori, to discuss it. In the meantime I contacted Kim, the bus scheduling person, and she finally gave me Sergio’s number. Sergio is the one in charge, and is Willie’s boss. He agreed to send Willie out again to my home to see the Kid Walk, but made no promises. Sergio also told me I could always leave her durable medical equipment at home.

I respectfully told him that he could leave his kids’ legs at home when they went to school too.

I think I may have used the word “ridiculous” five too many times in that conversation. Oh well.

Today I met with Willie again to take another look at the Kid Walk. Steve, a rep from National Seating, also arrived to make sure the Kid Walk was in good working order and to explain how to break it down since his company distributes it. Steve showed Willie how it worked. Willie asked about the locking pin and if it was a problem, I started to explain that we thought it was a problem, but that Steve had just showed me how to use it (before we had not be using it at all), but Willie interrupted and said, “It’s a problem? Yes or no.” Ugh. Mostly though he was pleasant enough. But he did mention other kids were denied bus service based on equipment issues and that their parents had to bring the equipment and children to school themselves. Whoa! That’s not legal is it?

My hope was to explain in a rational manner that denying a child transportation based on her special needs qualifies as discrimination based on disability. If she qualifies for bus service in every way except for her disability then policies need to change. And if they deny her again I will be forced to fight this legally. I think I communicated that. Willie wanted me to see it from his perspective. I can understand his perspective, but I could never agree that denying my daughter bus service would be in the best interests of my daughter or the community. (I started to cry. Ugh.)

He said we’d know tonight or tomorrow what their decision is.

I feel like I’m fighting a system of apathy.

The idea of a legal battle makes me sick. But hearing about other kids being denied service because of their equipment makes me feel sick too. Just having to fight this at all makes no sense to me. It’s just illegal. And this is an emotional hardship on our entire family when something like this happens. This is not the first time that we’ve been denied some service through SDUSD because of Laelia’s special needs. This is not the first time we’ve heard loud and clear, “We don’t want you.”

And Laelia’s self confidence just gets chipped away when this crap happens. I sat down with my daughter on the front step of our home after they left and we talked about how much everyone wanted her to be able to ride with the other kids. “I want to ride the bus!” Laelia said, “But it doesn’t want me.” I told her that Willie and Steve came over to our house just to try to work out bus service for her because she was so neat. (Okay maybe this is fibbing a bit. The transportation people are actually the problem, but since Willie has a first name that she knows, then in Laelia world he’s one of her friends, and it would be hard to explain that he’s not on her side.) She said that made her happy and she wants to ride with her friends again.

Then she asked if they’d let her drive the bus.

I love clinics. Not. (I’m being super mature today. Not.)

At least I know how they work now so it’s not so overwhelming.

I got the recorded reminder call two days before our appointment with the following list of things to bring and do:

1. Your appointment is at 8:15. (We showed up at 8:40, and then didn’t have to wait around for the appointment. Hehe. :))

2. Bring all equipment and braces to appointment. (I forgot.)

3. Bring your insurance card (they didn’t ask for it), immunization record (didn’t have), and child’s social security number (couldn’t find).

4. Bring $ for parking. (It’s free on Fridays, duh.)

And here’s what they didn’t ask for:

1. $40 copay. (Apparently “clinic” doesn’t always mean “free.”)

2. Child. (Ha!)

3. List of questions and child’s medical history. (Very necessary.) 

So I spoke with the doctor and we’re very glad our orthopedic guy (AFO-maker) suggested him. This doctor does NOT do surgeries, but instead looks at the whole body. He noticed that in every one of Laelia’s x-rays she was “backed up.”  We knew she was having trouble with constipation, but we also knew this was normal for AMC kids, or kids with physical disabilities in general—something about not having the muscle strength to help with the digestive process or not being active enough. But I hadn’t given it much thought until she started bleeding every time she went #2. (To the teenage Laelia who is reading about her childhood. Yeah I put that on the Internet. And I showed it to your boyfriend. Love you!)

It turns out that Laelia’s sacrum is not fully formed. X-rays clearly confirmed this. I remember doctors looking at her sacrum in the past, but there were always bigger issues at hand so it was never the main focus of attention. Now it was the biggest issue we were looking at, and all the potty questions followed. I felt bad for having a three-year old still in diapers for one thing. (Although that is our next goal in OT.) She goes #2 in the potty, but still goes #1 whenever, wherever. The questions scared me a bit. I didn’t even laugh when my daughter removed her sock and threw it at the doctor’s back while he studied the x-rays. (Which was pretty funny.)

Fortunately there is an all-natural, tasteless medicine that will help. The only problem is that we have to give it to her daily, for the rest of her life. Don’t get me wrong, I’m grateful for the fix, but having to give my daughter something everyday will be a challenge. Antibiotics everyday for her infection was hard enough. I know there are moms in much worse situations than I am, with real medicines and worries, and I won’t dwell on it, but I’m bummed about this news.

Laelia and I both get a little nervous about clinics. It’s always emotional no matter how routine. I always come home a little down and out. So when Laelia saw the fountain outside of Children’s Hospital with statues of children playing in it, well…

(*THE FOLLOWING STORY IS AN ADMISSION OF GUILT. DON’T TELL CHILDREN’S HOSPITAL!!!*) 

So she really wanted to throw pennies in the fountain. “Pweeze Mama?” And she was a bit scared and a bit weepy about going to clinic, meaning her little request was pathetic and heart-breaking. So I said she could. But when we approached the fountain (carrying the nine pennies I found in the bottom of my purse), we realized right away that this was NOT a coin fountain. But after a few seconds of internal debates, we cheerfully threw pennies anyway. Laelia’s wishes included chocolate pudding, a baby brother, a baby kangaroo, more sitting breaks during PT (fat chance, kid!) and more pennies. (That’s my kid!) Then she handed me a penny so I could make a wish. I wished for a nap. Laelia quickly informed me that she had made an earlier wish that we would play and not nap when we got home. I must have missed it. Uh huh. Yeah. Wish voided.

So we walked out of there with a stack of prescriptions and they are going to try to add us to the muscle dystrophy clinic so the doctor can keep up with her. Arthrogryposis is neuro-muscular thing so they’re going to try to finagle us into that clinic. Unlike Seattle, San Diego doesn’t have an AMC clinic.

So that was our clinic day. It’s over now. Our brand of normal often gets interupted by these things, but now it’s back to real life. And if anyone from the hospital asks if we know how the fountain got clogged and flooded, we’ll just point out that we don’t have a baby kangaroo and demand our money back.

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.

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.