Sleeping Beauty is out of surgery!

(Hip plate removal surgery marks Laelia’s fifth surgery and she just turned four years old.)

Thank you for all your prayers and words of encouragement and well wishes and positive thoughts and everything else! This was our best surgery yet! And I’m sure all our friends and family contributed to that. My cousin, Josh, also put something on his music blog for Laelia. So sweet.

I don’t know where to start. Well I’ll just say I can’t believe we made it to the hospital by 6:30 a.m. after three hours of sleep. (Considering it was 3:30 a.m. in California.) We’ve looked better. Laelia was her usual chipper self so we gave her the stink eye a lot.

It’s a practice at Shriners Hospital for Children for the anesthesiologist to carry your child into the surgical room without her parents. In San Diego I would get into full scrubs and follow her in and help her get through the scary gas mask, etc. Here I just watch as they take off with her. So how do you get a perfect stranger to carry a child into surgery without the child freaking out?

You get them drunk. Really drunk.

There’s a medicine they give them orally that makes the kids so loopy and crazy that it provides a bit of dark comedy right before they leave. Laelia is the funniest drunkard ever. She’s goes from being scared to grinning her head off at everything. And her big head just bobs like her little neck has no power whatsoever over it’s course. Her cheeks get rosy and she starts talking nonsense too. It’s the best. Charley went to get out the video camera to record my daughter making a right fool of herself in my arms when the anesthesiologist came for her. Then it became a little heartbreaking.

Surgery went well. She was under for only about two hours. A bit of bone grew over the right plate so they had to chip it off before removing that plate. But my biggest fear was evaded: none of her bones broke! And that means this is Laelia’s first ever surgery where she did not go into casts afterwards!!!!!!!!!

She came out of her deep sleep a mess. She screamed her head off. I walked into the room with her crying and the apologetic nurse saying she hadn’t been “doing it long.” Who knows what that means. I went to her side and sang to her. She just cried loudly for a while. The nurses were asking where the pain was. Finally Laelia just shook her head. I asked her, “Are you in pain?” Laelia shook her head. “Are you just mad?” Laelia nodded and said between gasps, “Saaaaaaaaaaaaaaaaad toooooooooooo!” Poor thing hates surgery.

Reassured her pain meds were working (remember our failed epidural last surgery?), I rocked her in a rocking chair and then we transported a calmer version of Laelia to the fifth floor for recovery. She cuddled and fretted and finally fell asleep. So did her daddy.

She woke up and drank a little. A good sign. She hated her IV and would cry out saying she was in pain, but when we asked where the pain was she said her hand. Well her pain should have been in her hips where the surgery was, so I can only assume she was trying this ploy to get us to remove the IV. She would have done anything to get that out and even attempted to do it herself! Good thing they tape it down on kids!

This surgery was just so much easier than others we’ve had. She only needed extra oxygen for about ten minutes. That’s a first. We usually have that thing going by her head for days. By the end of her stays I’m usually pretty light headed from leaning in close. She also had the usual sweaty head and low temp, but that was also minimal. She developed a cough, but it wasn’t bad enough like last time to require the breathing treatments. We even decided to put her in her own clothes and it made her look and feel even better!

I remember after her last surgery clutching the Pain Management brochure they gave us and reading it over and over, searching for ideas that would help. This time we were joking about her stricken look as she told us it wasn’t funny. “It’s not nice! I had surgery!” She pouted. But she was just doing so well we couldn’t help ourselves.

By dinner time Laelia had eaten a ton and wanted her Halloween candy. No nausea this time! She was being polite to the nurses but she was bored. So they let us go home! We were suppose to stay overnight, but we happily fled back to the Ronald McDonald House. Laelia was so happy to see her mound of Halloween candy again until I assured her that she couldn’t have any until it had been a full 24 hours after surgery. It had only been twelve hours!

Now I know surgery, and I’ve experienced it quite a few times, but this was nothing, this was EASY. They even cut into scars she already had so no new scars!

We visited Brysen, an AMCer who is also from California (although a good nine hour drive away from us), while we were there. He had a similar surgery to what Laelia had last year. He had lots of complications though, but seems to be doing better now. Still Laelia tried to say, “There there, it will be alright,” and make him feel better. He put up with her well. I have been loving his mom’s blog since I discovered it: http://www.mylifemydesire.blogspot.com/ (Scroll down to the bottom of the page if you want to turn off the music.)

We got back to the house and had some dinner. We ran into Jen and her family while we were there. Isabel (also an AMCer), Emma and Laelia colored pictures and Laelia even moved around in her wheelchair by herself. That caused some pain issues later, but I think the freedom was good for her. (I’m writing this post the next day and the girls are playing in the playground while I do.)

Laelia didn’t sleep much and she scared us with a low fever and some pain issues, but overall I think this went better than it could have. Her cough seems better this morning too. She just seems happier in her own bed with her own music and pillow.

Does this look like a kid who had surgery this morning???

This is baby “Joel.” He has arthrogryposis like some of the best people on this planet do. Below are copied and pasted articles and stories of the reality for those with arthrogryposis in certain parts of the world. Donating a few dollars to Joel’s account by clicking on his picture will help save him from this fate by off-setting the cost of his adoption. He could be Laelia. He is so similar to her it’s scary. He haunts me. Please help me support him.

In you the orphan finds mercy.–Hosea 14:3

Never take advantage of any widow or orphan. If you do and they cry out to me, you can be sure that I will hear their cry.–Exodus 22:22-23

Around age four, children with special needs (despite maybe having no mental problems) face mental institutions.

Here’s what they look like. (Warning, prepare your heart before clicking on this video link.)

Little has changed since that video above was made by the Today show.

And I just imagine Laelia here and it makes me hurt deep within.

Below are other stories.

“Lillian Horodysky, founder and Executive Director of DVOU commented on the alarming condition of orphanages in Ukraine, ‘There were rooms after rooms full of children, lying in their beds, just staring up at the ceiling. All that could be heard was the rustling of their covers, if they moved. It seems as though the thoughts in my own head sounded louder than a disabled orphans barely audible sigh.’ The conditions of most Ukrainian orphanages are deeply concerning. Most orphanages for children with special needs are located in remote areas of Ukraine[...] and orphans’ chances of survival are dramatically reduced even further because of substandard medical care, childcare and little or no education.’”
(http://www.artukraine.com/uasupport/dvou.htm)

Because I rescued the poor who cried for help, and the fatherless who had none to assist him. – Job 29:12

Learn to do good. Seek justice. Help the oppressed. Defend the cause of orphans. Fight for the rights of widows. –Isaiah 1:17

“Within two weeks of arriving in Ukraine, Nita went to her first orphanage, Veloska, where God broke her heart for the plight of the orphans. She discovered a system which is the same throughout the former Soviet Union. Children are housed in different facilities depending upon their mental and physical conditions. It is estimated that there are over 60,000 ‘orphans’ in Ukraine. The vast majority of these children have parents and have been placed in the orphanages[...] simply because they are handicapped. When the children reach the age of three to three and a half, they are evaluated by a panel of experts who determine whether these children are ‘normal’ or ‘retarded.’ Once a child is labeled as ‘retarded’ (or ‘imbecile’), they are sent to an orphanage for the mentally retarded where they will remain until they reach adulthood.” (http://www.godshiddentreasures.org/orphanmin.html)

I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me! –Matthew 25:40

“Working in Ukraine, he [Terry Hallman] discovered that the standards of care given to disabled children in many orphanages were extremely poor, and that children often stood little chance of surviving into their teens. Terry wrote an insightful and shocking article, ‘Death Camps for Children’, which explored and exposed the key reasons behind the issue, such as a lack of funding, limited medical knowledge and large-scale corruption.” (http://www.justmeans.com/reports/Ukraine–Death-Camps–For-Children/525.html)

Speak up for those who cannot speak for themselves; ensure justice for those being crushed. Yes, speak up for the poor and helpless, and see that they get justice. –Proverbs 31:8-9

“When we arrived at the orphanage we were met by older children without coats, they were begging us to give things to them and not to the directors. It is very hard to write about the rest of this part of the trip. I cannot give a step by step account because we were all in a state of shock. We spoke to the director about our program and he told us that he knows the children need more but he said, ‘I cannot ask my workers to do more, they work very hard, clearing the road,
shoveling snow, cleaning the floors and the children, they have not time, they must work very hard all day and then they must dig graves and bury children.’ What do you say to that? Still, the staff took us around to show us how it is. Words don’t come to mind, most of our team was crying and could not stop. Dark hallways, screaming, children clustered together in freezing rooms, some in strait-jackets, haunted looking crying, asking if they were good, asking for food. Water dripping from the dark ceilings, mold everywhere. We held children who were 10 and 13 years old in our arms like infants. One team member said later that she never knew that humans are like fish and will only grow to the size of their environment. One team member threw up outside. Children never leave their beds in some rooms. These children are ages 4-16. In other rooms they leave to go to a room with just a bench and nothing else in it. They hold each other -rocking one another. I have never seen such deprivation and our photographer said it best when he said it was a concentration camp for children. Sorry, this is such a hard part to write but I looked in the eyes of many children who are dying. Their tiny bones fit into the palm of my hands. Their skeleton faces begging for help. No one in our team has really slept since. We talk about it but just end up in tears. I promised the orphanage staff we would come back with a team of people to help them. They are counting on it. The director told one team member that 20 years ago he asked for help there and the soviet minister came and visited. The visiting soviet minister told the director, ‘why do you keep these animals alive? You can kill them, you know how to do it you are a doctor.’ He never sent any money or aid to the orphanage.” (http://eng.maidanua.org/node/581)

Do not withhold good from those who deserve it, when it is in your power to act. –Proverbs 3:27

Therefore, to one who knows the right thing to do and does not do it, to him it is sin. –James 4:17

“End of the Road. The children’s home at Kalinovka in rural Zaporozhye Oblast can scarcely be called a ‘home,’ and the children, 160 in number, ages 4-40, are by no means typical ‘children.’ For this facility in rural Ukraine is the end of the road, both literally and figuratively, for some of the oblast’s most severely impaired children–kids with neurological, cognitive, and other crippling disabilities. Alyosha, for example, age five, lacks hands and feet. But he is only one of many at Kalinovka needing care and affection. Between thirty and thirty-five children are confined 24/7 to beds in a ward that has until recently been off-limits to visitors. Permanently institutionalized, 80% of the children here seldom see moms, dads, or relatives. For the 100 or so children who can walk, there is little in the way of planned activities or learning. None of these children, so we were told, is ‘educable.’ Nothing could be further from the truth. Clothing is often shabby and dirty. A number of the girls have Down Syndrome; many boys here appear to have some degree of cerebral palsy or similar neurological impairment; others lack arms or legs; some appear autistic. In 2005 a child, Nadyusha, with a congenital brain hernia was sent to Kalinovka, probably to die; still untreated, she has managed to stay alive. There is no doctor in daily residence; a physician comes once a week. The bedfast children seldom, if ever, go outdoors. As a result of limited care and nutrition, the mortality rate at Kalinovka is said to be eight to ten annually.” (http://www.deti.zp.ua/eng/show_article.php?a_id=90002)

Pure and genuine religion in the sight of God the Father means caring for orphans and widows in their distress and refusing to let the world corrupt you.–James 1:27

“And so it began.  The road to teaching Haven new things.  The road toward healing. The little angel was locked away in a room for the last two years of her life, isolated from everyone because orphanage staff were afraid to “catch” what she had if they touched her (autism, becoming non-verbal).  Life for Haven was about to change. It struck me this week–the change in Haven’s life has been nothing short of miraculous.  I have looked at my sweet little girl after being away from home for a while, and something has struck me over and over again. Haven has hope!  It’s not that I did not know it before, because I did, but this time it’s different. I see in Haven what every single child waiting deserves.  Hope! THERE IS NO HOPE FOR ANY CHILD IN AN ORPHANAGE! Nothing.  Zero.  Zip. Haven would absolutely have ended up in a mental institution for disabled adults. What kind of hope is that?  What kind of life is that for any human being? Adoption is their ONLY HOPE!  And in most countries, foreign adoption is their only hope.  There is a less than zero percent chance that either Haven, Hannah-Claire, Hailee or Harper would be adopted by a local family.  They have no value in their own country.  They have absolutely no worth in their society. They are are defined by their ‘special needs’ in their countries. Their only hope is for a foreign family to come and rescue them. Period. (http://www.nogreaterjoymom.com/2010_04_01_archive.html)

Proverbs 24:11-12.

11 Rescue those being led away to death;
hold back those staggering toward slaughter.
12 If you say, “But we knew nothing about this,”
does not he who weighs the heart perceive it?
Does not he who guards your life know it?
Will he not repay everyone according to what they have done?

And anyone who welcomes a little child like this on my behalf is welcoming me.–Matthew 18:5

For more facts click here.

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.

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.

I’m old, Gandalf. I know I don’t look it, but I’m beginning to feel it in my heart. I feel… thin. Sort of stretched, like… butter scraped over too much bread. I need a holiday. A very long holiday.              ~Bilbo Baggins

Pain reduces my little girl into a ball of infant-like need. She loses her language skills, her manners and her ability to function. Laelia is in a lot of pain. I cause the pain. I think right now we both don’t like me.

Laelia’s doctor gave it to me straight. He laid out what therapy Laelia would absolutely require and how often to do it. I realized, as I immediately started sobbing in front of him, that what she needs is much more than I’m providing now. Constant care. Wow. So I went home with a heavy heart as I tried to figure out how to make this work. Right now I’m only working half days at my job. And I’ve already met with my boss to try to figure out what to do. Charley and I talked about me giving my two weeks notice, but instead we’re trying to work something else out with my work so we can still afford to move. It’s all still up in the air. 

Laelia needs so much. She needs stretching and massaging and all sorts of torture. Her AFOs are so painful. She screams when I take them off or cinch them up or look at them. She screams and cries most of the time I’m with her.

We don’t even put her shoes on correctly while she’s at school because she’d be in pain the whole day. And if it’s too hard on the school, God knows they’ll make it harder on our family. I talked with a school admin on Monday who was unhappy Laelia still needed her wheelchair. This person really thought Laelia would be walking after surgery and seemed very put out. She mentioned it already takes a long time for Laelia to feed herself and get around as it is! Ten bucks says this person doesn’t know the name of Laelia’s condition. Twenty bucks says this person has no idea how it feels to have a cast off and your atrophied limb stretched. The admin said, “Now do you really want your daughter in a wheelchair for four hours?!” I wanted to say, “NO I WANT HER RUNNING AROUND!! OBVIOUSLY!”  I just calmly explained AGAIN what Laelia’s condition was and what her prognosis was. I’ve repeated myself so many times, I don’t know how I’m unclear! Bottom line: all her doctors, except for the one very special guy we travel 3000 miles to see, tell me she will never walk. Uggggggggggh!! I think this school admin person sometimes singles us out because a disability is hard for them. During that same conversation with the same admin, they actually said, “Just tell me what you expect from us? What do you want us to do for you?” I hadn’t asked for anything at this point; besides asking where to leave her wheelchair. Now would that person have ever asked that question of ANY other typical students’ moms in that school? The answer is no.

I’m exhausted. I keep telling myself that the worst of the pain is behind us and the rest is temporary. She’s reacting so badly to foot stretches that we’re considering taking her in for an x-ray to see if anything is broken. Just for peace of mind.

We’re not sleeping. Laelia wakes up several times in pain.

I’m a mess physically. I’ve been to three different doctors who can’t figure out why I’m dizzy or why I get vertigo. Laelia screamed for twenty-eight minutes straight while we waited for one doctor today. The receptionist was just putting phone calls straight on hold since she couldn’t hear over the cries. I couldn’t get Lali to calm down and I tried everything. The doctor didn’t even find the cause of my vertigo and we went home feeling worse than when we went.

I’ve been crying for four days straight: at the doctors’ offices (both hers and mine), the grocery store, at work, while driving…

And if we didn’t need to deal with everything else, I’ve also been trying to call my new insurance who doesn’t know who I am, Children’s Hospital’s developmental services who doesn’t like that our insurance changed and won’t let us see our therapists for weeks, California Children’s Services who demand official doctors’ notes to prove she has AMC before processing our request (and if we do get them they won’t allow us to see our OT hand specialist anymore), Shriners Hospital in Los Angeles who we need to work out how to bus us to them, etc, etc, etc, but no one can get Laelia the PT she needs NOW. Shriners is the closest to providing it, but that would mean being gone six hours a day, two days a week. Not ideal. And her doctor said if I can’t get her professional PT two times a week to call and write my local congress people and senators. *cry*

Surgery without PT is like getting braces on your teeth and then once they’re off, not wearing your retainer because no one will give you a freakin’ retainer for WEEKS and then your teeth go back to being a mess. Stupid, right? Oh and no one will just work with us or make this easier because it would inconvenience them. For example, please no one take my word that Laelia has arthrogryposis. We just like to give her surgeries for fun. Just assume we’re lying and demand multiple official copies of doctors’ notes from doctors who don’t return my calls. Ugh! What? LOOKING at her isn’t good enough?

Okay I’ll stop being so sarcastic and angry. I’m just so tired. I’m doing all this for the long term results. This is ALL temporary. Someday life will feel normal again, like it did before when we got on top of all her treatments, doctors and therapies the first time. *deep breath* Sorry, I’m better now.

Today at the grocery store I went to remove my daughter from the shopping cart and, before I even touched her, she grimaced. She grimaces every time. Not because she hates grocery shopping as much as I do, but because her wide legs always catch the cart, and her knees, that stick out past her hips on either side, bang against the metal frame. It takes two people to successfully remove my child from a shopping cart: one to hold her legs together and the other to lift her out of the seat. But there was no one else around so Laelia grimaced. Like she always does. 

But what a shock when her legs slid right out!  For the first time in her life, my daughter has legs that are positioned correctly to fit in the shopping cart seat!  Thank you Father God! Thank you Dr. van Bosse! Thank you Shriners Hospital for Children in Philadelphia!

Laelia’s legs, a history:

10-10-07 – Laelia’s splayed, externally rotated legs at birth.

10-29-07 – Laelia’s first casts to correct her feet at three weeks old.

2/23/09 – One of our attempts to keep Laelia’s legs together.

2-14-10 – Laelia’s corrected feet (that finally fit into shoes) look great, but her legs are still so splayed and outwardly rotated that her toes point away from each other and her knees go off in different directions.

(Her shirt says, “Dr. van Bosse Fan Club.”  Thanks Jessi!) 

1/11/11 – After seeing Dr. van Bosse and getting her osteotomies, Laelia’s legs are now straight! Her knees now crown her legs instead of jutting out to either side, and her toes point up instead of away from each other! She’s in the position most people have naturally when sitting or standing! And boy did she work for it!

The trip back to Philly was exhausting.

And required a lot of travel. Her friend, Justice, gave her a push, but he didn’t go all the way to Philly so we had to get on a couple airplanes too.

When we got there it was so cold! Too cold for this little California girl!  Lali had never seen snow before and asked me why it was wet and cold. She thought it would feel like pillows. :)

At the Ronald McDonald House we spent time with Sophie, Ben and their Mommy, Tammy! (The next day the five of us would all get in a big rental car and drive to Shriners!)

Mama got practically NO sleep that night… or the next night… or on four of the five airplanes we took. The reason for that was one little girl who would not let me sleep. The only sleeping she did do at the RMDH was when she was faking it for this picture. Mommy about strangled her. :-/

The next morning we waited for our appointment with our friends. Here’s baby Lexi!

Before cast removal.

After cast removal.

Lali’s new legs are so straight that I often find her staring at them like this. My favorite Laelia quote in her sweet little voice, “I’m very beautiful and straight now after my surgery.” Precious!

Her legs go together!

Her legs go apart! (She’s sporting the Wicked Witch of the East socks. )

Oh and here’s a video of her waiting for Dr. van Bosse.

Laelia took FOUR baths while in Philly; I just emptied the tub when it got cold and filled it back up again. Each time a new layer of dead skin got gently massaged off. She LOVED getting bath time back!

Laelia’s feet (especially the right foot) swelled up pretty bad after our three (in one day) airplane rides back home. It was because of the new, aggressive AFOs and all the pressure they caused. Now she gets foot massages everyday until the swelling goes down.

But no matter how bad the travel, surgery, recovery, swollen feet or negative comments from strangers got, look at this end result! Look how straight she is!  Compare the above picture of her lying on her side to this!  Amazing, right?!

So now that I’ve gone through the eye candy (aka pictures), I guess I’ll sit down to actually chronicle our journey. It was long and hard. Wait, that’s summarizing our journey. I guess it’s going to be hard to write about. Half of my brain no longer exists because of this trip; it was that exhausting.

I just want to say we had zero problems with flight attendants. Every one we met was courteous or helpful or nice. This is a major improvement from last time! And this is the first trip where I prayed about this specifically. It just made the whole trip seem surreal. Where were the fights? People I handed Lali’s card to were just really interested in her. It was great!

I also want to say that our needs kept getting mysteriously met. For instance, I got a rental car, but it was going to be too small to fit all my passengers. But before I even realized this I was getting help out to my rental car by a nice lady (just another traveler) when I heard her whistle and remark, “Wow, that’s a nice one! That must have set you back.” I was totally confused as my tiny rental car was unexpected, unasked for, upgraded for free to a larger vehicle! It fit all of us including three casted kids in the back, all our stuff, a wheelchair and a double stroller. 

But not only that, our little needs got met too. I ran out of arms to carry things on the plane and several strangers at several different times helped me. Lali and I were hungry but we had no cash for the cash-only cafeteria so they gave us food at no charge. We got lost, but ran into a security guard we recognized who gave us directions. Getting lost meant I didn’t have time to stop for gas for the rental car, but Thrifty Rental decided to waive the fee and cover the gas. It snowed, but we stayed on the road. The Ronald McDonald House doesn’t take reservations, but we were able to stay at the house we wanted that was closest to the hospital. Laelia was an excellent flyer and was well behaved through five airplanes! That in itself is a miracle! (And when we got back and I praised her in front of her father, Laelia beamed with pride.) I had a vertigo episode so bad that I fell over during Lali’s PT appointment, but that was the only bad one the whole trip and it was in a safe place!  Laelia would not sleep at all, so we ended up leaving at 3:00am our last night there because we were up anyway. We would have missed our flight if we hadn’t since we got lost, the elevators at the airport were broken and the flight was at 6:05am!

Pretty much lots of things just worked out. If I had written them all down, I could write a whole book of blessings! Our needs were met again and again. Our comforts not always, but our basic needs were covered.

I had a sore throat, vertigo, stomach cramps (diarrhea and vomiting), a headache that only got worse when I got home, and stress and dizziness caused by lack of sleep while on this trip. I didn’t sleep more than about three hours in four days. So this was a hard trip. In fact, I got so sick the night before our appointment that I stopped up the toilet in our room to the point that we had to switch rooms!

And the whole while one special little girl refused to let me sleep; she was too jet lagged and excited. (She would not sleep the next night because of pain and discomfort.) I yelled at her once. I said–and I remember it exactly since it’s the second time I’ve ever yelled at her–I said, “I’m SICK and TIRED of YOU!”  Since then if I’m down or frustrated Laelia will ask me, “Mama? Are you sick and tired?” It breaks my heart.

I tried Lali in the bed with me, Lali in the other bed, Lali on the floor and even Lali in the closet! Nothing worked. She would not sleep. Finally in the middle of the night (around 3:30am) Lali asks me, “Mama, will I go to Heaven like Grandma if I die?” Okay now I was wide awake. I told her she wasn’t going to die, she was just too sleepy and needed to get lots of sleep. (I was very desperate for sleep.) But she asked again, “Will I be with God if I die?” Sure honey, just sleep now. But it seemed to bother her so I cuddled her close under my chin, her fuzzy hair going up my nose, and said that she was God’s most loved kid. Then when it was clear she would not sleep I told her her favorite story of Adam and Eve. I told her how God created Adam and Eve and how good they were and how he loved to hang out with them and how Mama is sure they always went to bed on time and slept through the night.  Laelia loves to chime in that they ate the fruit when they weren’t suppose to and that’s called sin. And sin is “anything we think, say or do that makes God unhappy.” (Insert Laelia’s sad face here.) And how sin pushes God away (insert Laelia pushing me here) because God is holy. Then I resume my story once I get it back and add that God caught them in the garden of Eden all naked and ashamed so he sacrificed an animal, using its skin/fur to cover their shame. And how the punishment for sin is death so people used to sacrifice animals to cover their sins temporarily. But how Jesus was called ”the Lamb of God who takes away the sin of the world.” And how he died in our place, to take our sin away in the same way. Then he rose from the dead. So Laelia said, “Jesus died for my sin like a lamb! Now I can be with Holy God!” And she accepted Jesus as her savior with all the passion of a three-year old trying to get out of bed time.

Before we realized it, it was morning and we’d gotten zero sleep. Time to drag ourselves into the snow for cast removal, AFO fittings and a very special, life-altering (although we didn’t know it at the time) doctor’s visit.

Our insurance change slowed the whole process down a bit. Cast removal was a dramatic event. Laelia screamed louder than I have ever heard her scream before. It was unnerving. And the screaming lasted as long as the cast removal, a whole 20 solid minutes since they had to saw around the bars. Then we were on to x-rays. These were the first x-rays she ever took in her whole life that she didn’t cry/scream through. (Small victory!) Then off to her AFO fittings. That took forever. It was at this point that we realized no one had a small child’s potty for her to go number two in. And she was afraid of the adult toilet because she could fall in. So she had to go number two in a diaper while waiting for the AFO guy, which embarrassed her a bit. When we finally got to our doctor’s appointment, AFOs in hand (well, on feet) it was after lunch.

We briefly met Zak and his daughters, one of which is Grace who has AMC, and the Nalle family whose blog I follow. The Nalles adopted Aaron and this was their second trip to Philly–their first casting. Poor Aaron.

Then we finally got to see Dr. van Bosse. Even though he was pleasant as always, we were hit with a life changer. Laelia needed a lot more than what she was getting. She needed two PT appointments a week with a professional. She needed stretches and exercises several more times a day. She needed weight bearing. She needed her feet stretched. And if we couldn’t get these things then we needed to start contacting our local government. We could no longer just do PT and OT once a month because it cost $80 a visit. If she is going to walk, we needed to step it up.

Well I work full time so that creates an issue. Her school won’t do a darn thing, not even simple stretches. It’s a mess. Dr. vB also mentioned that if worst comes to worst I could have her bused up to Los Angeles to get free PT at the Shriners there. That would literally be six hours away from home twice a week.

And on top of it all, it was going to be a painful time for Lali. Especially the first two weeks.

My husband and I aren’t always graceful in how we handle all this stress. Charley once asked me once I got home to stop doing Laelia’s stretches in front of him because he couldn’t take it anymore. Laelia’s pain makes us crazy. And I get so upset with how everything has to be so much harder for her. She can’t do simple things seemingly everyone else on the planet was born doing naturally without huge effort, surgery and pain! It sucks! Laelia says, “Pain is good because it means I’m getting better.” At least one of us has a good attitude… when she’s not screaming.

And I’ve been dealing with her preschool as well. They are a government-run facility, meaning they can’t “quit me.” But the head admin there can be the least amount of understanding as humanly possible to make our already miserable lives even more hard. It’s willful ignorance.

So life has changed, and life is hard, but we continue on. Our beautiful daughter looks at herself in the mirror often and stares at her straight new legs while smoothing them with her hands. I don’t think she gave it much thought before, but she now thinks of herself as very pretty. And she is. 

We weren’t given bad news in Philly, but we were handed change. And that’s always hard. I hate change. It makes me feel out of control. I like things to stay the same. But I know if they did then my daughter would not have her lovely straight legs. I just need to focus on the positive.

Maybe I’ll go buy a shopping cart and then just spend hours putting my daughter in and out of it. Just for the fun of it.

Once again we fly from California to Philadelphia because what’s a rare disability without a three thousand mile commute for treatment?

This afternoon, during the automated call to confirm my Friday appointments at Shriners, I both dropped my phone and fell out of my chair… at work… in front of my boss. :) It’s my own fault for stayed up late last night to drive out to Santa Ana and have some fun with friends (who are moving to the Congo… yeah you read that right). So I’ve suffered from sleep-deprivation-induced delirium all day today. That might affect my blogging a little. Or not. I dunno.

Weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!

Right now I’m still packing. I have everything in front of me but it doesn’t all fit in my back pack like it should. I didn’t count on the weather meaning I had to take bigger clothes. I would have been done by now but I had to go to the gym tonight after my daughter, and I’m quoting her here, says, “Mommy do you have a baby in your tummy or is it just big?”  :-/

All that to say… I’m still packing. I’m sure I’ll be done before we take off for the airport at 4:30am tomorrow.  So it’s all good!

Well it would be all good if not for this cold I feel coming in my throat. Also my vertigo was really bad today. It was probably just the lack of sleep though. Also I have stomach cramps. (Ladies, you know.) So everyone feel really sorry for the rude flight attendants who enter my war path this weekend.

Speaking of flight attendants, I was out of my “Hi! My name is Laelia!” cards that I pass out to flight attendants so I don’t have to explain over and over again about Lali’s condition. Flying so much for medical treatment has taught me that if I don’t pass them out it means trouble. For example: When the head flight attendant demanded my daughter stand up because it was “a policy” while waiting for the bathroom. Example: The flight attendants who said my daughter wasn’t really disabled and implied I was somehow abusing her. Example: The flight attendant who held us up to check out our car seat and rudely said (as I waited and held my heavy daughter) that I should just put her down and let the poor child walk a bit instead of always carrying her. Example: The flight attendant who didn’t give me a straw (stir stick) because, “She can just use her hands.” Example: The flight attendant who said my daughter was “dirty” because she was scooting on her bottom instead of walking. Example: The flight attendant who could not or would not provide a wheelchair when we got off the plane because “you don’t get one just because you have a small child.” Example: The flight attendant who took our wheelchair from us and scolded, “This isn’t a stroller.” Example… you know what, I really need to keep packing so I’ll make this short.

So I didn’t have any darn cards left. We’re thinking they got thrown away accidentally during one of my infamous purges. I even tore apart my apartment looking for them. I ended up finding instead a doll’s head, a banana my husband was hiding from me (caught!), my UNO deck and a pair of pants I thought I’d lost, but no cards. So tonight I ordered new ones (that will come in two weeks). Then Lauren found out about this and made me some on her computer and emailed them to Chelsea who ran to work tonight to print them out for me (since I don’t have a working printer) and then delivered them an hour ago! Yay! I’ll pass them out to every flight attendant on all five planes!

Ugh five planes. Three lay overs. Calculating… that’s like forty-eight hundred flight attendants! Ugggggggggggggggggggggh.

On the plus side I get a massage on January 15th as my reward if I make it back from Philly in one piece and with the same small child that I left with, minus casts.

Once again I’ll figure out where we’re staying (the day of) during our 55 minute lay over in Denver. I printed out directions to and from three different possible places: two Ronald McDonald houses and one hotel. So we’ll see. I’m hoping for the RMDH on Erie that’s closest to the hospital. I don’t want to drive too much in bad weather if I can help it.

It’s suppose to snow on Friday and be 20 degrees or so last I checked. I borrowed a jacket from Chie because I don’t own one and Chie’s family lives back East and she’d heard of this thing called ”cold.”  I’ve got my one and only scarf Chelsea made me for Christmas and some gloves I got on sale from Target. I’ve also brought a blanket to wrap Laelia in. I think we’ll make it. I’m just so intimidated by snow! More so than traveling across the country!

But nothing can get me less excited about this visit. While we’re at Shriners we’ve got a lot to do: Updating our new insurance information with the office, showing off standing (!!!) for Dr. van Bosse, casts removal, car seat swap (they’ve been holding ours since November), KAFOS or braces fitting, wheelchair returned (followed by begging and pleading to hang onto it), Laelia will get her first full bath in six weeks, we’ll be meeting up with other AMC families (who I’ve been stalking on Facebook) and also we *may* even schedule Lali’s next surgery for the Fall!

I just don’t know what I’d do without “AMC Mecca” and the amazing progress Laelia is making because of the experts there. Arthrogryposis has met its match!

Today my daughter got kicked out of preschool.

I knew once she joined that gang and started doing drugs and bringing knives to school that it was only a matter of time. Oh wait, my daughter wasn’t able to stay at school today because SHE’S DISABLED. More specifically, she couldn’t stay at school today because the treatment for her disability is serial casting or post-surgery casting, and casts are apparently, all of the sudden, out of the blue, not okay.

Today my husband attended a meeting with Laelia’s principal, PT, immersion teacher, classroom teacher, disabilities coordinator person, etc. They, as a concession, could take her back for half her contract hours (half days) and then kick her out when her aide leaves for the day at 12:30pm. They’ll “see” about more than that. When I say “they” I’m referring to the principal more than anyone. And they can do this because her IEP only covers half the day.

Today my husband said he felt as if he failed his daughter.

Today we found out that our special education coordinator, who we felt was Laelia’s advocate alongside us, no longer has that position.

Today I comforted my daughter because she was upset and she wanted to go back to school. I had to explain that right now her wheelchair and her casts have made the principal of the school uncomfortable and we have to wait until someone can help mommy and daddy convince them that she’s a great student!

Today I had to research the ADA (Americans with Disabilities Act) to figure out if they can deny her what she would have if she weren’t disabled.

Today I Googled lawyers, not for the first time, that can maybe help me enforce her contract hours at school.

Today I left work to try to play “school” for my daughter. Today we tightened our budget.

Today I wondered how we were stupid enough to get ambushed like this. They ALL knew about this surgery since before the school year started! It was mentioned in her IEP for crying out loud! There was clearly a 100% chance she’d come back to school in casts. I reminded everyone at that school that we’d be back in casts on December 1st before we left for Philly!

It doesn’t make her any less mobile than before, by the way. Casts actually protect her better than next month when she doesn’t have them!

She had surgey and casts last year and went back to school! She will have surgeries and casts and serial casts all her life and cannot just NOT go to school because you don’t want her there, people!

The principal did pull me aside before we left for Philly to say they had “concerns” about not having enough help, but I thought that was being worked out. And I never thought they could do this! Do they not realize that if they can bully (YES BULLY) us out of school based on the fact that our daughter is “hard” on them, then she’ll always have to deal with fighting for her rightful place alongside her peers? If they can’t afford watching her, and that line of reasoning works to keep her out of school, then they can blame the budget or economy every time they take something away from her!

SEC. 202. DISCRIMINATION. 42 USC 12132. “Subject to the provisions of this title, no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.”

What would they do if a typical child came back in casts?

School obviously is too much for her and too hard for them, but Disneyland is fine. Um… yeah. They may not want her, but Mickey will take her!

Cold day at Disneyland.

It’s a Small World After All!

She sang along!

L for Laelia!

The one drawback to having a wheelchair instead of a stroller is when she gets sleepy she can’t recline.

Today I treasure my beautiful, bright and well-behaved girl.

Today I’m dizzy, nauseated and mad.

Today I promised myself I would treat this as a growing experience and learn how to communicate and educate the people I feel are persecuting us for their own ease. Today is a challenge, not a setback. I think I believe that.

Today my daughter asked a billion times to go back to school. She was only able to stay a short time and she’d been looking forward to going back since her surgery. She tried convincing me with reason. She tried “please.” She promised she’d be nice.

Today I cried.

Today I wiped my eyes, took some nausea medicine, pushed my glasses up my nose, rolled up my sleeves and sharpened my claws.

This is a battle I cannot lose.

This is Scarman. We took him to Philly and added Laelia’s scars from our last  three major surgeries to Ward’s existing ones. We even added little marks on the back of its feet for the tenotomies Lali got when she was a few months old. Many people have scars, but Lali knows her scars are special because they don’t just point back to a tragedy, but they point forward to hope.

I’m so thankful I have a conversational little girl who can speak her heart! After an hour and a half talk with her past her bedtime, I asked if I could write down what she said as we talked. She agreed. (And then begged for her own paper and pen. )  I wanted to share a perspective of this last week that is so foreign from what I went through that it seems alien. I wanted to share her thoughts on her surgery and her insights. She has an excellent vocabulary for someone her age and a surprising outlook bordering on the inspirational.

A few days ago, Saturday I think, I asked her, “Laelia, how did your surgery make you feel?” This face (see below) was her response. I asked her if I could take a picture of her pouty face and she grinned and said, “Yeah!” then went back to a pout face.

Obviously her surgery was not a pleasant ordeal. After doing some research and getting some insights from different people and their experiences with their kids (or their own experiences), we’re now fairly certain that Laelia’s epidural didn’t work.

… yeah.

Or at the very least, it couldn’t have been 100% effective. When one of our friends first suggested this, Charley and I thought back to those days and looked back at our notes. Sure enough we saw a pattern. When the doctors added medicine to her IV things got better. When they gave her Tylenol with Codeine (either orally or “down under”) things even improved. But she seemed to be in more pain than I was expecting overall despite that epidural. Back arching, facial contortions that went beyond grimacing, and the inability to even speak was not, as I believed at the time, a universal experience for this surgery. I believe now that we should have asked the epidural be removed and regular, intravenus meds be given in its stead to keep on top of the pain. 

This realization has made me angry with myself and sick to my stomach. I was crying to my husband about what Laelia must have gone through and what she must think. And then it occured to us (because we’re slow like that) to ask her! And during the subsciquent precious conversation with my little one, I was taught what happiness, endurance and hope look like.

***

(My thoughts/words in parentheses as Laelia shares her story.)

The hospital loves me. (Everyone loves you, kiddo.)

Surgery hurts my bones and need to heal. My bones are right here. My surgery was right here. (She only points to her right side; it hurts a little more than the left.)

Hurting a little is okay. Not when it hurts a lot. (True wisdom.)

I want to stand and walk. Kids who stand and walk get surgery. (Oh really?)

Surgery makes me sad.

(“What made you sad, Laelia?”)

My legs.

I don’t like things in my nose. (The oxygen.)

I don’t like my medicine.

Takes a long time to poop.

Moving me hurts me right here. (Again she points to her hips.)

Doctors picked me up from school. The doctor take me at school. (I’m not sure on this one since asking clarifying questions always results with the answer, “Yes.” I think she is sad she missed school. And maybe she mixes that thought from when the doctor picked her up to take her into surgery?)

(“After your surgery what made you mad?”)

Mama, I want that my kitty come with me. (We took her stuffed doggie, but not her kitty. I had no idea she felt this way! We immediately got her old stuffed kitty, it’s one of many, and apologized to it.)

I DO NOT like that in my nose. (Oxygen again.) And not in my eyes. (When it fell off her head.)

And, I dunno.

(“Laelia, was there anything that made you happy?”)

(I didn’t expect this list to be so long! She simply lit up!)

Mommy and Daddy, both persons in the room. When I wake up too both persons.

When they put that (oxygen) on my head and not in my nose. (Okay we get it!)

Um we talk about Disenyland.

Go to Disneyland in four weeks. (Sooner, but she’s got four weeks stuck in her head.)

Flying on the airplanes and seeing clouds and city lights.

My tiger because he goes RAWR!

Surgery means to stand and go and go and go. (I believe this is her sharing her hope.)

Nemo. (She then quoted SEVERAL lines from this burned-in-my-brain-forever movie.)

I watch a lot of TV and then had to blink my eyes like this. Blink blink blink. I watch TV and my eye hurt. (That is a lot of TV.)

I love Mama and Daddy and Chelsea and Tiger.

They (hospital staff) give me chocolate pudding.

Helicopters that come and you say Help! Help! and they come and take you and make it okay. (?????????????)

And my blankets.

Red! That color is the favorite. (She got a red blanket and pillow case from the hospital.)

And I can do this! (She grabbed her bar and grinned.)

Dancing.

Um…… I… I is a happy girl.

(AND SO SO SO SO SO PRECIOUS! My blessing from God.)

(What more could I be thankful for this Thanksgiving?)

The first 24 hours are the worst. If your child is getting this surgery and you can get through those hours, you will have gotten through the worst your child will ever go through. Surgery itself is cake compared to this.

She cried. And cried. She arched her back and grimaced. She would sweat profusely through her pillow case and sheets. She didn’t speak. She squeezed her eyes shut but couldn’t get respite through sleep. She cried. And moaned. And cried.

And we couldn’t do anything about it; just be there watching her in pain. And we couldn’t leave the room to use the bathroom without her startled cries and elevated heart rate (machine beeping at us) pulling us quickly back to her bedside. Sometimes she wanted me to hold her hand. Sometimes she hated to be touched. Sometimes she wanted a hand on her tummy. Sometimes she just wanted to scream in my face and look at me accusingly for not fixing her pain. 

Charley adds: “She was reduced from her super articulate three-year old self, to a tiny baby without the ability to communicate anything except need. She would cry something that sounded like, ‘I want I want I want I want…’ but without a way to finish that sentence. It was almost a full 24 hours before she learned, through the pain, to form a full sentence again. It was, ‘My legs hurt a lot.’”

I started to second guess my decision to have this surgery done. I kept thinking how much she has gone through, all to possibly one day stand or walk. This was too much; I was a terrible mom.

The incision site was above the cast line.

The casts were not a spica, but instead full leg casts connected by a bar. This is so she will have more mobility later, but for right now it’s just hard to move her. You cannot move the cast separately from the hip or twist her or lift one side or anything you need to do! It’s so hard, and I’m so intimidated to even touch her.

My husband broke down again somewhere in the first few hours. For some reason that made me stronger. Because if he was the strong one, then I would break down. I don’t know how any single parent goes through this.

Nurses, God bless them, were wonderful yet we wanted them to all go away. They had to check her vitals every 15 minutes. So every 15 minutes Laelia screamed her head off. But it was different than when she’s throwing a fit or when she’s got a boo-boo. She was downright scared. Her cries were desperate and hoarse as if she were being tortured. Laelia couldn’t stand having the blood pressure cuff on her arm. So I took it off. Then a nurse came in to put it back on, but not to take her blood pressure–just to leave it there. So I took it off. Laelia was scared of it and in a lot of pain so I asked it be kept off until they needed to use it. When I got the “it’s the hospital policy” line, I tried using her amyoplasia as an excuse. I said she was special and this hurt her. I lied through my teeth which is quite unlike me. (Also I forget that people have actually heard of her condition at this hospital.) The nurse wrapped it onto the bed rail and hit the top of it in frustration and left. She came back later with her superior who put it back on my daughter. I told them all that if they needed to take her blood pressure every 15 minutes they could darn well come in and do it themselves as opposed to leaving it on her arm to go off automatically and freak her out the whole time it was on. I was at my wit’s end and I made it clear that I would take it off as soon as they left the room anyway. I watched that cuff try to take the blood pressure of the bed rail more than once. It gave me a grim satisfaction.  

Lali refused to keep the oxygen in her nose, so the doctor put it on the top of her head unintentionally making those who tried to cuddle her light-headed. Despite being largely mute, she was very particular about her own care.

Laelia also sounded like she had a bad cold. She was congested due to some fluid in her lungs from intubation. And that meant she had to have breathing treatments done. Which she hated. A lot. And up until now things had been done to  her, so when she finally had the power over a part of her own care, she was darn well not going to participate. But when her breathing was affected by the junk in her chest we had to force the respiratory device into her mouth and tell her we wouldn’t take it out until she breathed into the device. It worked, but the last thing I wanted to do was force more hardship on this little soul.

The respiratory therapist gave Lali a gorgeous black-and-white stuffed tiger as a reward for doing her first treatment. Charley gave Mr. Tiger a voice from then on out, throughout our stay. Subsequent breathing treatments were done after a few bribes or threats of, God forbid, pausing one of her two billion viewings of Finding Nemo until she cooperated. (I’ve now seen that movie more than the animators themselves. But I’ve got to admit it was much preferred over half of what children’s programing had to offer. Dinosaur Train? Seriously?)

The next morning Laelia was still on IV meds, an epidural and a suppository. Finally she got some water and a couple bites of my breakfast pop tart (that she demanded) down so they switched her from the suppository to oral medication around lunch time. And Mama was the only one who could give it to her. So I had to squeeze her cheeks so hard it broke the capillaries in order to force one milliliter of medicine at a time through her teeth until she’d had five milliliters. During her second dose four hours later she choked and threw up all over me. Because the puke was on her IV, blankets and pillow case it meant that we had to move her to change those things out. And moving hurt her. She screamed in pain for half an hour straight after that. So finally after was seemed like hours, the doctor decided to up her epidural medication and add two somethings to her IV. About five minutes after that happened, she stopped crying and announced, “My lips are purple. And I am so very pretty.” And then she argued about the amount of strawberries the hospital had stocked. She was so very drunk off pain meds. But for the first time in too long we were able to just enjoy her.

Charley and I were so very tired. Every little stress seemed to be magnified. The cafeteria had hours they were open that never corresponded to hours we were available, we never had one dollar bills for the vending machines, my cell phone only held 50 texts (40 texts caused large delays receiving messages) which meant I was constantly deleting all of my important messages everyday to allow more to come through, the lack of sleep hurt us physically even with trips to RMD house, driving through the ghetto almost resulted in accidents or death of stupid pedestrians daily, and on top of these small issues, we felt personally responsible every time our daughter whimpered.

Many things are awful about surgery, but I think inability to sleep is the worst. Even when she was asleep she would cry. She would do a “crysleep” for ten minutes then wake up and cry out loud and then fall back to crysleep. The crysleep sounded like a snore only with her voice box making a high whine sound every time she exhaled while she grimaced. It was very disconcerting.

Even in a deeper sleep than crysleep her heart rate was 140! That’s the same as I have when jogging!

Sleeping was impossible with all the nurse interruptions, as unobtrusive as they tried to be. Even the guy who came in to empty the trash caused her fear and crying. We wished we could have had a heads up and just moved the darn trash can to outside the room before he came in!  Another doctor came in at one point to look for something he’d left in the room earlier causing panic. Someone came in to lay a tray of food down. (I wish they could dress up in a different costume so she’d know it was food coming and not someone coming to check her wounds. Maybe if they dressed up like giant chickens? Shriners you can use that one. ) One nurse, Wanda, came in often to add meds to her IV or switch out the bag. Laelia screamed every time until I told her that Wanda was coming to “play with her machine” and she wouldn’t be touching Lali at all. That line worked better than, “She’s coming to add medicine to your IV.” Laelia finally was quiet every time Wanda came in after that.

There were moments of less pain. Not really pain-free moments, but starting Wednesday afternoon we had times when we could talk to her and she would talk back. We were encouraged by the pain management brochure we were given to talk with her about happy memories and future trips. So of course we talked about Disneyland. We sang the songs to her favorite rides like It’s a Small World and the couple of songs we knew from the Tiki Room.

We also read her lots of books. I was getting encouraged when she could sit through a whole book even if she was crying the whole time. She wanted me to read to her, and would grab my hand if I took the book away thinking she was in too much pain. She would moan while I read, but I went through the fifteen books of hers we brought with us over and over again.

The second night was also hard. We decided to send me (Alexis) to the RMD house to sleep through my worry for a few hours, then I would come back and switch off with Charley. I broke down in the elevator before reaching my room. And while I was telling myself she was fine, she wasn’t. Charley was with her the second night, so I’ll let him tell this story:

“The second night Laelia was given Valium to prevent muscle spasms. It was supposed to be the first of several regular doses, but she started reacting to it almost immediately. She wanted her blanket off, which I accommodated; then she wanted her gown off, which I helped her unsnap and remove. Then she just started clawing at her IV and the sensors on her chest and finger. She wanted them off, she wanted everything off, and she wanted to get out of there. I called the nurse and doctor in, and they confirmed that Valium could cause this kind of disorientation. The nurse helped me get her into my lap–it was the first time either of us had held her since the surgery–and after about 30 minutes of singing and talking about Disneyland rides, she calmed down. Then the nurse gave Laelie her first dose of Tylenol with Codeine, which helped knock her out and give her 3-4 hours of continuous sleep. During her whole stay in the hospital, it was the most sleep she ever got at one time.”

So I came back from the Ronald McDonald house Thursday morning to find out that my daughter had a Valium trip that make her want to take off her own skin while my husband held her and cried into her hair. Laelia looked miserable and so did Charley so I kicked Charley off to the house to sleep off his trauma while I took the next shift. He had to leave through Laelia’s painful cries which was hard. But she settled down after a bit. 

During this time I got a text from Ryan’s mom. (Back story: This is the family we went to Seattle Children’s hospital with to get our amyoplasia diagnosis. The same place that gave us no orthopedic hope for my daughter. Which directly led to our AMC support group contradicting them and sharing about Shriners in Philly which ultimately lead to this very treatment course we are pursuing.) Ryan was scheduled to have the exact same surgery that Lali just had that morning. (They worked it out so we could have the same surgery week together.) Well Ryan had just flown all the way to Philly from California with both parents in tow only to find out that his surgery was cancelled due to slight congestion. Which sucked.

By Thursday afternoon before 2:00pm Laelia’s epidural and catheter were removed (not as traumatic as I would have expected, just a quick pull for both) and we were allowed to go back to our neglected fifth floor room. More magical medicine was given to Laelia so she slept the whole way there even when her bed got bumped pretty hard into the door. That evening after two more viewings of Finding Nemo it was becoming obvious that Laelia was in more discomfort than usual without the epidural helping. The nurse brought some Tylenol with Codeine and I forced it once again down my daughter’s throat through her teeth. It took about twenty minutes to kick in. Once it started working, it worked well. There was no doubt when it kicked in.

Laelia was doing better, inviting all the nurses to Disneyland with her when we got home and generally saying demanding things like, “I wanna go to Disneyland now! DADDY DON’T LAUGH!” But I was sure there was no way we were making our flight the next day. She still had such a long recovery ahead of her. It still hurt to touch or move her. And she hadn’t pooped in a week! Tomorrow I had to figure out where we would stay, how to change our flights and how to avoid blowing our trip budget to smithereens.

Needless to say I was shocked in the morning when our doctor came in and we were discharged that afternoon! (More to come in the next blog, Love is Kind.)