Everyday I give Laelia a long massage while she relaxes. But it doesn’t make up for the fact that these same hands also do her painful stretches everyday too. Sometimes if Charley is feeling up to it, he will hold her down so I can stretch her while she writhes, arches her back and screams. We’re suppose to do these stretches several times a day, but we only do the bad ones once a day. I don’t think she would trust us to touch her if we tortured her multiple times a day.
Laelia begs for cuddles all the time now, but instead of making me feel like a loving parent, I feel like an abusive one. I hurt her and then I comfort her. I hate arthrogryposis. I hate it. *cry*
Right now she’s crying and begging us to take off her straps. “Please Mama, take the strap off! It huuuuuuuuuuuuuurts! Right here! Please, take strap off!”
This has nothing to do with her surgery either. This is normal treatment for her club feet and joints. After getting her casts off she got new AFOs (ankle foot orthotics, aka “shoes”) in her favorite color. But her shoes always hurt her. The straps always hurt her. Putting the tight shoes on hurt her. Taking them off her hurt. Sometimes she’ll cry when we look at her feet for too long. Red is also the color of pain. They’re not even on as tightly as they should be because neither of us can stand her painful cries, but they STILL hurt her! And I know the different between whiny and pained. She’s not just being bratty, in fact I’m pretty sure she’s the best behaved child in the world. She just hurts.
Anyway, it just sucks. Not terrible. Not life-threatening. Just normal life with arthrogryposis. Another week and she should have adjusted more to the shoes, and then we’ll try to tighten them up more after that.
Oh and I’m still falling over. The vertigo that’s lasted almost five months now has morphed into a constant dizziness with sudden spells that are pretty distracting. I’m still functional, but miserable. My MRI was normal and I was almost disappointed I didn’t have the brain tumor they thought I might have. Not that I want that, at all, but I want an answer and I want relief. This dizziness causes constant nausea. And I’ve fallen over and lost my vision when doing Lali’s stretches. Not cool.
On the plus side, I got a massage yesterday. I had two really bad dizzy spells right before and a few more after, but during the massage was pure bliss. So relaxing! I haven’t done that for years! I always worry about “pampering” myself when my time and money can go to better things, but this was worth it. I did all my daughter’s stretches and then put her down for a nap with Daddy. I was back “mommying” before she even missed me! I love Groupon. This massage was 60% off with my Groupon! (Now I’m a Groupon advertisement. God bless Groupon. Hehe. )
Since having her legs repositioned, Laelia has had to relearn how to do many things she has done before like sitting up, scooting and going down the stairs. Today she went down the stairs on her bottom for the first time in two months! Also today Laelia scooted up to me (more slowly than before) and said, “Mama, I has to do my stretches now, huh.” It wasn’t a question. I asked if she was ready and she said, “Stretches make me sad and they help me.” Then she asked, “Just not hard? Kay?” Then she squeezed her eyes shut. Just about stabbed me through the heart. She hurts, but she understands why she hurts. Not everyone is so lucky.
For example, Jared doesn’t know why he hurts when he’s having his episodes. Jared has arthrogryposis like Laelia, but also hydrocephalus and other concerns. He’s having seizures and scaring his poor parents who are helpless to do anything for him (and believe me they’ve tried everything). He needs more medical treatment, but it’s ridiculously expensive and requires a commute. So his big sister, Braylynne (age 6), is making bracelets to pay for medical costs and travel. They’re only $5 each. Just click on the link below.
Or if you ever want to help them out, you can pass anything to me and I’ll get it to them. Since paying off our medical bills most recently and not being able to go to therapy because of insurance drama, and not having to go back to Philadelphia for six months (glee!), we’re doing okay. But they need to get their baby boy to the Hope Center in Philadelphia and have a hard road ahead. Or if you don’t need a bracelet and just want to help, go here. But the bracelets are super cool! If you don’t want it, Laelia would love it! I can give her one after every painful stretch. Let’s cover her up like the Michelin Man. :)
Having your kids in pain, no matter the severity, sucks. Thanks for letting me vent. Laelia’s life is a happy one and I hope to return to our regular uplifting blogs ASAP! I hope the next blog will be about how we miraculously are getting the physical therapy Laelia desperately needs! *crossing fingers*
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. )
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.
Just want to start with a video that sums up my mood lately.
Yes, happy sad happy happy sad happy. Pretty much we can’t be sad long because happiness is brimming under the surface waiting to pounce!
As far as being sad… Nothing major has happened. No battles or medical issues (lately). No natural disasters. Okay we did have a flood, but that happens every time it rains in San Diego. And driving a VW Bug through a lake that used to be a road is not a good idea. But all in all we kept Laelia’s casts dry and had fun listening to the rain.
The only sadness lately has come from thoughtless comments, both anonymous and in person.
Anonymous comments (usually through YouTube or occasionally through my blog) are easy enough to deal with. I just feel bad and then delete them. Done deal. But in person it’s harder. And since the holidays bring a lot more people out for shopping, and these people are generally stressed out, I’ve had to deal with some random comments from thoughtless strangers. We (Laelia and I) heard so many negative things while going to Target for toothpaste one day that I came home in tears. Then add to that all the recent trips to the aquarium, the grocery store, the post office… well we heard a lot of comments. Here are a few of the things people have said in the last two weeks and my response to each.
Stranger: “What is wrong with her?” My response: “What is wrong with that sentence?”
I’ve heard this question the most and it’s the most offensive. When making my response I try to do it without sarcasm and while smiling. That works way better than my typical response of, “Nothing!! What’s wrong with your face?!” Okay just kidding. But asking what’s wrong with the sentence does get people to evaluate what they’re saying, or at least let them know that I’m holding them accountable.
Stranger: “When will she be able to run around again?” Me: “Well, casts come off on January 7th!”
This comment is fine to ask, but just hard to answer. What I want to say is, “If God thought running around was so great, he would have made sure his favorite kid could do it!” A stranger’s question that involves a complicated answer (like going into your daughter’s incurable condition) is best avoided. I mean, doctors told me she’d never walk, but I’ve learned that maybe in a quick conversation with someone I’ll never see again, it’s probably not the best time to bring that up. One nice lady we met at the aquarium asked Laelia, “Are you ready to run in two weeks?” And Laelia got all excited and yells, “Yeah!” I pulled Lali aside later and explain how we hope she’s able to run very soon, in her own way. And that might even be in a fast power chair! (Her response was the same: “Yeah!” Love my kid!)
Stranger: “What happened?!” Me: “Skiing or bungee jumping accident. I don’t remember, I was pretty high at the time.”
Nothing happened! This is a normal part of our life! I didn’t injure her! Once again this question is kind of a punch in the gut even when it’s not intended that way. I walked around Target the other day and so many people said this to me in a not-so-nice tone, or worse–asked each other this question out loud so we could overhear them as they walked past us. Or even worse! They said it amongst themselves followed by saying, “Poor little kid,” as they walked by, but in a tone that carried all the judgement of the world, and directed straight at me. Sometimes people assume that if your kid is in casts then you’ve hurt her. Some people are assumers (and I say that with all the force of a cuss word). Responding in a joking voice, “rock climbing” to that question always gets a more reasonable dialog going after that, and gives me a chance to explain, “There was no injury. She was born with her legs in one position so they recently fixed that surgically.”
Stranger: “May I ask what happened?” Happy me: “Of course!”
I don’t mind answering questions! In fact we visited a church last Sunday and ended up spending a lot of time talking about arthrogryposis and not once did someone say something offensive! It can be done! I don’t mind if people want to know about my kid (my favorite subject)–I don’t mind questions, I don’t mind other kids’ curiosity–that’s all fine. Just don’t say anything that could be interpreted, “Why is your child a mutant?” and we’ll be fine.
Oh and while I’m on this rant about being tactful, drivers need the same lesson. I can’t get Lali’s wheelchair down a curb; up is fine, but down is hard. I need the handicapped parking space near the little ramp. I have a placard for just that reason, but during that same tearful Target trip mentioned above, there was a guy parked backwards in the blue lined space blocking the ramp. So after a while waiting in the rain with a shabby cover over those plaster casts we’re not suppose to get wet, I went into the store to ask the employee to send out a page over the loud speaker asking them to move. She responded, “But he’s just trying to make a return.”
The assumption being that my child just broke her leg (which was probably due to bad parenting) and now the crazy mother (me) feels entitled about where to park.
So how do I respond? Like a rock star that’s how! By choking back a sob and standing there wide-eyed. Well, I also repeated my request in my serious voice followed by silently pretending to take pictures of the illegally parked vehicle with my phone that can’t actually take pictures. Eventually the guy moved. Yep. That’s how the cool people do it.
But seriously I was completely vilified in this situation. Not cool. The “poor” guy just trying to make a return could have parked ten feet away in a legal spot. And it’s so dumb that stuff like this makes me never want to leave the house. Looks and stares and off hand comments would not bother me if they happened rarely, but it’s all the time now. The host guy at the Olive Garden open-mouth stared at her chair for so long I almost said, “Hey buddy! Eyes up here!” But I thought better of it. Bleh, there’s no help for it, people just stare. Especially now that Laelia is bigger and expected to move around more. I remember when strangers would just say how cute she was. She got her first casts at three weeks of age and I could hide them under her swaddling blanket. Those were the days.
So those are my little unhappinesses. But if you haven’t yet read the below posts, I’ll just say that obviously we’ve been completely blessed and had a ton of joy this season too. Just look at that video at the top of this blog post again and tell me it doesn’t make you grin your head off. And we’ve been supported by so many friends that say so many positive things! In fact because of that alone our happiness scales are completely unbalanced in a positive way.
So I will chose to be happy despite the looks and comments. Thanks for helping me do that!
Five screws make for bone blues. But a straighter position is our gift from a wonderful physician!
What’s better than getting lost on my way to a radiology appointment at Children’s Hospital?
A. Doing it without my cell phone.
B. Doing it on an empty stomach.
C. Finding the darn place, getting Miss Casts and her wheelchair to the correct department, waiting an hour then being denied x-rays because they don’t have my daughter’s date of birth and diagnosis written on the silly prescription!
D. All of the above!
The answer is D.
Two days later and we got the x-ray! Barbara in radiology made a few calls to Philly on our behalf and worked it out to have them fax over the missing information.
Our x-ray tech guy was super awesome and helpful. He was cool with my daughter (who is terrified of x-rays for whatever reason) screaming at him the ENTIRE time. After it was all over and the sobs subsided Laelia spent the next half hour telling me, “It’s fine Mama. There there Mama. It’s just a big camera. You’re fine now Mama.” !!! She gave her daddy the impression that she was the brave soul who comforted poor Mama through the entire process.
Then after all that they couldn’t give us the darn x-ray and we had to fill out lots of paperwork in the Health Information department. (A department that is hidden on the hospital’s massive grounds and involves a shuttle car, magic shaman and braving a hedge maze to find… not to exaggerate.)
Then I was called on Monday (earlier than expected) to pick up the records. (After, you know, finding my shuttle, magic shaman, etc.) Making it my third trip to the hospital in a matter of days!
Of course HIPAA made sure the CD those x-rays were on was nearly impossible to share with our doctor. So I ended up having to take a picture of the computer screen to get them. And because of these delays we had to cancel Laelia’s physical therapy appointment since we didn’t know if she could weight bear since we couldn’t get her x-rays to her doctor!
But I’d do it all over again just for the feeling I got when we finally saw the picture.
Before (pre-surgery from October):
After surgery:
!!!
Lauren made the x-rays modest for me by adding a black box (without me even having to ask, THANKS LAUREN!) so I can post them publicly. They are too exciting not to share! Pretty much what you’re seeing in the before picture are bad hip contractures (due to arthrogryposis) making Laelia look a little bent like she’s leaning over. In the after picture, the bones have been cut and moved down past the darn contractures. There are screws/clamps keeping them in place which will be surgically removed next year. But look at what a difference! Her legs finally go together!!!And they’re so much straighter!!!!!!!!
I feel so blessed! This life is hard, but it sure has it’s pay offs. Thank you dear Father God for my daughter and her new legs!
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.
They told me to give the school workers instructions on cast care since they won’t know what to do. Done. It contains such gems as: “Toes should never be blue,” “Do not get wet,” and, “I went to Disneyland in full casts on 11/28/10.” My diagrams are terrible and include lifting and propping. Plus on the left leg are full diaper instructions. Now there are NO EXCUSES!
Let me explain.
So getting Laelia back to school has become difficult. The plan was to go back December 1st. But I also knew I was suppose to call both Laelia’s school PT and her immersion teacher the day before going back to make sure they would be there to help with the transition. We also had to give the bus a day’s notice. But Charley and I called November 30th a few times and couldn’t get in touch with the immersion teacher. (Turns out she had the flu and wasn’t there.) We decided (last second) to get a sitter for December 1st and hope the school didn’t call like crazy wondering where she was. So now her first day of school would be on the second of December instead of the first.
Laelia talked about school like it was Disneyland (which we did on Sunday). She was really looking forward to seeing “my Genny who is my friend” (who is an aide she adores) and all her friends whom she would list over and over by name. She also LOVES her teacher, Ms. Wilson, who is on par with Mickey himself.
Well when I got a hold of people on December 1st I started to get the run-around. First we needed a doctor’s note, one that we had never been told about, from the Philly doctor! They were firm on this point so I emailed the doctor who, little did they expect, is WONDERFUL and emailed back immediately! He said she was fine to go back to school, just no gym. (Ha ha.) Then when I said I got the note, it was no longer that important and now having an aide in the afternoons was a concern. Wait, why wasn’t it a concern for the last few months when we ALL knew she would be returning on this day (or now it was the next day) in full casts?
Ugh.
Then they were worried about her casts themselves. We would have to tell the teachers not to get them wet. (Let me just say I have full confidence in her teacher’s common sense. This was just one more thing.) Thus the full instructions written on them in the picture above.
Then they weren’t sure they could bus her and her wheelchair to school and probably couldn’t work it out before she’d be out of casts.
Then they called back and there were now “safety tests” she would have to pass that the principal came up with (out of the blue when everything else wasn’t keeping us away!) before Lali could come back to school. What tests? Whose tests? Who would judge them? What was going on?
So after multiple back and forth phone calls with different people, I began to suspect they didn’t want her back to school because of the liability.
Now this is where I get on my soap box, folks.
1. My daughter has contract hours.
2. My daughter has an IEP and this was talked about in the IEP well before she was enrolled.
3. My daughter will have, as part of her life, casts. Treatment for arthrogryposis is serial casting or post-surgical casting. This is her life. This is a direct result of her disability. Um, anyone heard of the Americans With Disabilities Act… *cough*
4. If I allow anyone to keep my daughter out of school or deny her the rights of her peers because I was not strong enough to fight when they tried to convince us not to bring her back or because they made it “too hard,” then I have failed my daughter! If she doesn’t go back to school in casts, then how can I keep her in school for the rest of her school career when casts are a part of her life?
5. This is wrong.
Okay I do understand the other point of view. This is hard on people. Lali requires someone to change her diaper. She requires help if her chair or gait trainer get stuck. But I cannot bend on this issue, because then I don’t have a leg to stand on when I ask she be back in school after her surgery next year and the year after and a few years after that!
Ooh I just hate being the bad guy! I hate being *that* mom. I hate when people don’t like me. I hate when I have to push to get my daughter what she needs.
I want to be a nice, soft-spoken person who sees this whole thing as a way to educate people about arthrogryposis. I hope this is a learning experience to those without much experience with disabilities.
I heard back from the immersion teacher right before my doctor’s appointment. (I have episodic vertigo.) Laelia is going back to school tomorrow, but we’re sending her daddy with her to show the staff how to lift her, etc. Another schedule change, sigh.
This has been such a hard week on us in general. Here is my week in picture form:
Can’t get new ones until January. So super glue to the rescue!
Five days of episodic vertigo. Had twenty-two attacks today before lunch. I’m always dizzy and nauseated, but it doesn’t keep me from going to work.
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.)
Here is part one of the two part summary of our daughter’s major surgery in Philadelphia at Shriner’s Hospital for Children. I decided to be thorough on certain details of this trip since I know of a few people going in for the same (or a similar) surgery, and I wish I had known a bit more of the overall process. So since I don’t have the time to sit down and pour my heart out in one blog post, and my kid is finally sleeping, here is part one.
Night before surgery.
Watching Daddy play Mario. (This is how she likes to stand, wedged between the coffee table and couch.)
Laelia rubbing my back while playing peek-a-boo.
We cuddled and stayed up late the night before our trip for those extra hours of family time. We also took that time to once again talk about where we were going and what we were doing. Yet despite that, Laelia happily announced that we were going to Disneyland while she helped me put her clothes in the suitcase. When I corrected her and talked about surgery, she corrected me and says, “Daddy told me.” Well Daddy got in trouble. Then Daddy spent the rest of the time explaining that we weren’t going to Disneyland until much, much later. “Tomorrow?” Laelia asked. *sigh*
Laelia was a good little girl. She hand-picked one stuffed animal to come with us, her doggie, then comforted her doggie on its upcoming surgery. “There there, doggie. It be okay.” She was a good flyer. During the entire day of flying she only had one melt down. When we got on our second flight after a snow-covered Denver connection, she haggled with us, “Last plane today, okay?” Since it was, we agreed to her demands and the melt down ended. We also found out on our lay over that Ronald McDonald house near Shriners would take us for the night, and possibly for the week.
Then Mama had her own melt down after arriving in Philly when we realized we had missed several calls from the hospital. They were all informing us that our surgery time had changed from 6:30 to 10:00 am. Since I had been told 6:30 am, and that had been the plan for months, and I’m not good with last second changes, and it was a different story than I’d heard from the surgeon’s scheduling person, and and and… let’s just say I wasn’t sure it was correct. And of course even though the PACU was suppose to close at 5:30, it was 5:12 and no one was there. I started to cry, standing there in the middle of the airport, calling people at Shriners. I reached a lone admissions desk person who, after apologizing for laughing when she realized I was freaking out, convinced me not to show up at 6:30 just to wait for hours with a hungry toddler. She wasn’t sure on the time, but she was sure the PACU people would have told me the correct time. But I just didn’t want to risk all the time and effort and set up it takes to fly across the country with your daughter then miss a major, important surgery just because I wasn’t willing to wait a few extra hours in a waiting room. I didn’t know what to do.
Thankfully we arrived at Ronald McDonald house on Erie street to a welcoming, calming environment. Instead of doing orientation they suggested we eat dinner first. In the dinning room a soccer team of girls put on a puppet show and dressed up my daughter and another adorable girl, Sabina, like princesses and sang songs. Sabina’s dad, Michael, started talking to us about what our daughters would be doing tomorrow. It turned out he had an early appointment, 6:30 am, with Dr. Van Bosse, our doctor! Well since Dr. vB can’t be at two places at once, I was finally at peace that our appointment was indeed at 10:00 and we’d all get to sleep in. He was at the right place at the right time to calm all my fears.
I guess I should explain a bit about the Ronald McDonald house. They don’t take reservations, so the only stressful thing about them is not getting to know where you’ll be staying until the day of your trip. That said, Ronald McDonald house is like Grandma’s: there is plenty of food, lots of toys, friendly people and you can go through the cupboards and pantries like you own the place. And you’re expected to clean up after yourself before you leave! It’s also a place to can be alone, or you can meet other people in your situation. It is your home away from home, and a lifeline to a lot of families who can’t be with their hospitalized children without paying through the nose for a hotel otherwise.
We had a large room with two beds. But Laelia, in usual Laelia fashion, was being a big turkey and refusing to sleep. So we locked her in the closet! Haha, I’m not kidding! We put a blanket bed in there and when she immediately sat up and worked the door open, we put her back and closed the door on her! So she had a tiny little bedroom, Harry Potter style! I felt bad about it so as soon as she quieted down (about ten minutes) I opened the door. Then Charley took this picture of her sound asleep. So cute! That dirty bottom was from scooting around in the airport on those dirty floors. I’m thankful she started the hard day ahead well rested. She woke up cheerful and full of life. I started the long day ahead with dread.
It’s a funny thing. I would think I was handling everything fine and then I would throw up with nothing to blame it on except stress and worry. This happened twice–once Thursday night and again Sunday night–and both times I was surprised by it. Since I mostly felt very peaceful, I mean for the circumstances. In fact, I’ve felt more peace about this surgery than any of the other three, even though this will be the most major. Besides being terrible at internally handling these situations, I do handle them well outwardly. Then I throw up apparently. I truly believe I did better this time because of the number of people praying for us. Sure I was stressed and worried, but I didn’t have to deal with the depression or morbid thoughts that I have before. I felt lots of peace flowing my way. And it was something outside myself. The other several differences between this surgery and the former ones were that I was more prepared for this one, I had more say, I had more questions answered by the doctor (who I have a crush on) and I had more hope. And, people were sending us their love, positive thoughts and praying lots and lots of prayers to God on our daughter’s behalf.
One stresser was transportation. The rental car companies at the airport wanted to charge us $500 for those days we would be in Philly, for their smallest cars! Our budget was $200 total. We tried to do the whole thing with cabs, but we had to go between the hospital and RMD house too often. Then while looking up prices online I stumbled across something a whole lot cheaper, but I had accidentally found something in Philly but outside the airport. But that place closed too early and we’d miss it. So Charley found another place and flat rates for cabs online to get there. So we ended up taking a cab to another rental place, then the rental car to Ronald McDonald house. It was a round-about way to do things, but budget friendly! I suggest it for anyone needing to have a substancial stay in Philly. We used Enterprise in Downtown. (Tell the cab driver their address–36th S 19th Street–or it’s hard to find.) Cab there from airport: $26.
Our hospital is surrounded by the ghetto. I’ve said this before, but I was hyper aware of it having to make a lot of late-night drives through it. Plus having to deal with the non-stop sirens at night or crazy drivers/pedestrians during the day… bleh. At least this time with Charley with us, we transversed those terrible, confusing signs and streets that make up north Philly, and actually found the Shriners entrance/parking lot this time around!
We arrived at Philadelphia at 10:00 am and were still waiting for surgery at 12:45 pm. So glad we didn’t show up at 6:00 am! Every time a person came to check Laelia’s measurements, blood pressure, temperature or simply to take out the trash in the room, Laelia freaked out. She was scared. The people at Shriners are nicer than any other hospital we’ve dealt with. They care. Period. That’s the difference most of the parents I’ve talked with notice first. These people know how to distract a child, talk to them and work quickly through their screams of protest. But despite this skill, Lali was still pretty freaked. When we walked into the PACU and saw the nurse, the first thing Laelia did was cry and shake her head, “No no no no no!” The nurse put a hand on her and said, “I have a very important job for you to do, okay? Are you ready?” Laelia nodded quietly. Then the nurse showed her a wall of bears and asked her to pick out her special surgery friend. Laelia started to relax a little.
Finally they gave her something that left her inebriated. She went from completely rigid to totally relaxed. She kept sliding off my lap even! Then my drunken baby girl began to sing silly songs while slurring her words, and with that reddish hair it really brought out the Irish in her. When the man in scrubs came to pick her up and carry her into surgery, instead of freaking out, Laelia went complacently with him. I watched them walk down the hall as her head swung limply, like a sack of potatoes, in time with his steps.
And she was gone.
My arms, that she’d been in since we walked into this scary place, were unnaturally empty. I was clutching her blanket really hard to remedy that empty feeling. When we stepped into the elevator to head back to our room I caught a glimpse of myself on the elevator’s reflective metal wall and I looked like some melodramatic lifetime movie reject. I made a conscious effort to relax my body and facial features to look, what Charley refers to as, ”not crazy.” We went to the cafeteria first off and forced down some fried food that sat in our stomachs like rocks all day. Bad move. A nurse came in while we ate to let us know they got the epidural and IV in (a potential issue with arthrogryposis patients). We thanked her for the news, but it became harder to swallow after that. We called family, watched Man Men, hung out with Sabina and her daddy for a bit and paced. Well I paced, while Charley kept trying to grab me as my course sent me within a foot of him.
I called the PACU around 2:40 pm. They had just finished with her first leg and were just about to break her second leg. Waiting after that became harder. I paced some more. The last half hour was the worst. My stomach hurt, I felt sick and every minute felt like it had been too long and something had to have gone wrong. I was on the seventh floor in the waiting room that had large windows looking out over the ghetto. I’m afraid of heights and was going slightly mad. My mind played this trick where I could imagine myself falling as the floor melted away, and then for a second every so often it felt like it was actually happening. I started to think about worst case scenarios. Just as I started to get really morbid and my stomach lurched, just under five hours after handing my child to a stranger, the doctor we’d traveled across the country to see walked into the room.
The surgey was done and we could see her in about 20 minutes. The sites looked good, but her right leg gave him a bit of trouble. She wasn’t as straight as we’d hoped, but this was definitely a great first step towards standing up straight. But because of her epidural, her recovery would be in the ICU until Thursday. And hopefully we weren’t too set on flying back Friday.
My skin was crawling because I wanted to see her so badly. A woman led us to Lali’s room at a pace much too slow for me. Laelia started crying once she saw us. I looked at her little face, so sad and angry and drugged, and my mommy instincts kicked in with all the comforting I had within me. I blotted at her sweaty face and told her it was all over. She always looks so little after surgery, so tiny. She was hooked up to so many different machines. Her breathing was labored and she sounded really congested because of the liquid in her lungs. She didn’t talk or smile–so unlike her. Then I looked behind me to see my husband, my rock, completely lose it–big tears falling down his cheeks. He excused himself from the room and sobbed.
This girl only has six months to be adopted! If she's not adopted she'll either be thrown into an adult mental institution (even though she does not have a cognitive disability) or be thrown to the streets. Please help spread the word and let's find her parents!
(Now I’m a Groupon advertisement. God bless Groupon. Hehe. 
