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.

Oh yeah!

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.

Self medicating.

Okay here are some cute pictures:

The stuffy council is now in session!

Daddy can never name all the Dr. Seuss “animals!”

Princess Laelia is ready for Disneyland!

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!

Shriners’ Hospital’s Waiting Room Vrrrrrroooooooom!

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.

It’s days like this that I realize all over again that my baby girl has arthrogryposis, type amyoplasia, that she did nothing to deserve, and what that means for her life–a life that is a total blessing to me.

We are leaving in three days to fly all day to Philadelphia. Then on Tuesday, November 16th at around 6:30 AM, Laelia will have her most major surgery yet.

The surgery is five words long: bilateral (both sides) proximal (nearer to the body) femoral (thigh bone) reorientation (change position) osteotomies (bone cuts).

What they do is cut all the way through the bones extremely close to the hips, removing them and then clamping and pinning those bones in a slightly different location facing downward. Since Lali has joint contractures (which is when the joints harden and don’t move) in her hips, and doing surgery on the joints themselves will cause her to be immobile, we are hoping to move her bones around her contractures so she can one day stand. We don’t yet know if she has the muscle strength to stand or walk (because of the muscle weakness of amyoplasia), but she will never be able to even have the chance without this surgery. Right now her legs are externally rotated so that her knees turn out and she can’t bring her legs together. With this surgery the thigh bones will still be facing outwards, leaving her legs externally rotated, but the bone will be positioned downward so she will, for the first time in her life, bring both her legs together.

Think of a ballerina doing first position. We also call this surgery the sitting-like-a-lady surgery since right now she sits with legs wide apart.

The surgery will take many hours and require weeks of recovery as well as six weeks in a lower body cast connected by a bar at her feet.

A year from now they will do another surgery (in Philadelphia) to remove the pins and clamps that will be inserted internally into her body and at that time they will be doing another major surgery on her knees and left foot as well.

I’m having a bit of stress today as we are still trying to get a rental car worked out, we don’t know if Ronald McDonald house will take us (we don’t find out until the day of) and we’re not packed. Also if any troubles come up during surgery and we’re unable to fly back on time then that becomes another expense and headache to work out. And sickness is going around town, Charley is on antibiotics, and we can’t risk Laelia getting sick right now.

Some wonderful friends are dropping by Sunday to help me clean so we can bring Little Miss Post Op home to a clean environment. We’re looking at some hard weeks ahead. We’d appreciate everyone’s positive thoughts and prayers for success as we proceed. Thanks.

When my husband mentioned to a friend that Laelia’s surgery was next month, November 16th, Laelia exclaimed, “I gonna have surgery!”  Which she pronounces more like, “ser-gy.”

This led to a big conversation about surgery.

She then said, a little less excited, “I gonna be sad on my sergy.” I wondered if that was a question, even though it was presented as a statement. I asked if she knew it was going to hurt. She parrotted my words back to me, “Is sergy gonna hurt?”  I said it was, but that it would be temporary. She began to get upset and cried, “I don’t want sergy!”  She then scooted pretty fast into my arms. I held her and explained what the surgery would do and where it would be. When I touched her legs to show her where it would be, she flinched. Poor frightened little thing. I wish we were having this talk the day before surgery instead of a month before so it would be over with quicker. But to spare her I demonstrated on my own leg what they would do in surgery. I drew a line with my finger over my hip and down my thigh a little ways. She was wide-eyed.

I asked her to bring her knees together and she did a good job. Then I explained that after surgery she would be able to bring them together all the way. “Like this?!” she brightened and swung her body back and forth on the carpet pushing her legs closer. “Even closer! Surgery is important to help you do that.”

“My surgery will hurt me.” Now I knew these statements were questions since her eyes were pleading with me. I could almost follow her little mind as it processed how something good could hurt her. But I assured her that she would be asleep when they did it and feel nothing. And I would be with her.

Then we did pretend surgery. I put my cupped hand over her mouth and she breathed deeply and then went to pretend sleep, snoring loudly. Then I said, “Okay surgery is over now, time to wake up!”

She blinked at me and grinned, “I awake!” then added more sadly, “Now my sergy hurt me.”  I told her she would still be sleepy and not feel much, but then much later she would feel sore. “I no want my surgery.” She said.

Then I asked her if she’d ever had surgery before. She hesitated and said, “Yeah.” Another question! She wasn’t sure! How did I not get before that my little girl wasn’t sure how to ask questions about this. So we pulled up her pants leg and I showed her the scars. I asked her if they still hurt. “Nooooooo,” she said mocking. Did the scars on her feet still hurt? Her thighs farther up? Nope. How about on the other leg. Nope. Well this next surgery wouldn’t hurt after a while too. She was just too little to remember all the surgeries she’s had.

She still looked uncertain so I decided to show her my surgery scar that stretched across my lower abdomen. I explained it was a surgery to help Lali get out of my tummy safely.  I said it hurt for a few days afterwards, but it wasn’t as bad after that. Then I punched my stomach to show it didn’t hurt anymore. Then we talked about Chelsea’s foot surgery and looked online at two kids who had had the same surgery Laelia will have. One of those kids is standing unassisted now.

“I can stand like this,” Laelia boasted as she showed off her one knee balancing act. I asked if she would like to stand on both legs and she said in a quiet voice, “yes.”

But… And there was a “but” coming.

“Mama, I no like surgery.”

Me either, little girl. Me either.

Yesterday I taught Laelia how to say the word arthrogryposis. It was cute. She started out saying it ‘arf ra cry posisisis.’ I reassured her that she said it better than most medical professionals.

This came about after volunteering at her school during recess. The other kids always ask me questions about Laelia, then I turn to Laelia and ask her the same questions so she can be in control of what information gets out about herself.

“Why can’t she lift her arm?”

I turn to Laelia, “Laelia, why can’t you lift your arm?”

Laelia: “I do it like this!” She arches her back and twists a little to achieve more lift.

The little girl who asked the question still had questions. “Well why can’t you do it like me?” And Laelia just repeats herself but with a bit of attitude this time, “Um, like this.” She waves her arm around again. (Hello?)

I realized Laelia wouldn’t be able to explain why she did it differently because she didn’t know the name of her own condition. So I decided to practice it with her so she could answer more difficult questions. We practiced saying the word together that afternoon. Once she had it pretty much down I then decided to put this knowledge into practice. I asked Laelia, “Hey, why can’t you move your arms or legs like other children?” (Something I hated asking, but I’ve heard so many people ask this so many times that I wanted her to be prepared.)

Laelia’s response was, “I can!” And she threw her tummy around causing her arms to swing wildly and her legs to twitch. It made me laugh. Well that wasn’t going to work. I tried something else.

“Laelia, why can’t you walk like other kids?”

Laelia responds again with a huge show-off smile, “I walk like this!” Then she scooted several feet across the carpet on her bottom.

Well I was trying to teach her to respond with, “Because I have arthrogryposis,” or “arf ra cry posis” or something close. Instead my lesson was turned around on me as she taught me how to respond.

I think I use the word “disability” too much. I use it because people recognize it and what it implies. It’s just an easier (lazier) way to communicate with strangers. And whereas I’ve heard the terms “handicapable” and “diffability” I’ve never realized until yesterday why they are important. Because Laelia CAN move her arms and legs. And Laelia CAN walk. And Laelia CAN play like other children. She IS like other children. And her differences are explained by the word “arthrogryposis” and also at the same time not explained by it at all. Laelia is not summed up by the word, only her joints are.

So maybe when I print out the next business cards they will say “condition” instead of “disability.” And maybe when we introduce people to Lali we will say, “Laelia moves like this,” instead of “Laelia can’t move her arms or legs very much.” It’s important to be positive, because that’s what my daughter is. And when answering for herself she has decided to focus on what she CAN do. And she shows her friends how to do things in a different way, and often they try to imitate her!

For example, at recess there is a significant group of kids who surround us and practice drinking water from cups without using their hands. When they get a few swallows without spilling they show me how they can do it too! It’s a cool skill to have. (Sorry all you parents whose kids come home from school and try it with the glassware.)

And having a walker is also super cool. Laelia often has to admonish the boys and girls by saying, “Friends! Don’t touch my walker, friends! Come on friends!” It’s so cute. I asked if they would want someone to push them around or tie up their legs and I think they are starting to understand. But I see the longing in their eyes. A few of the braver among them either asked timidly for a ride in the walker or if I would buy one for them too! I’m the cool mom who bought the cool toy.

Also I’ve noticed there’s a difference between the people we meet for the first time and the friends we’ve had for a few years. The second group treat Lali like a kid. The second group take it in stride when it takes Lali a little longer to do something or get somewhere. People who know this kid know she’s a kid, and treat her like a kid.

So the biggest lesson I’ve learned lately on this crazy parenting journey is that arthrogryposis is a disability and Laelia… is not.

So much has happened since the last post that I find myself artificially paralyzed by the changes. I’m not a fan of change. I remember after that surprising shock of a double-lined pregnancy test when I had to comfort my husband (and myself) the only way I could: by promising nothing would change. “We can still go to concerts–we can still have a life; we’ll make it work! Nothing major will change.”  That promise shattered into a million pieces the moment she was born, and a million more the next day when she was diagnosed. So I’m grasping for energy in the midst of these changes, but not like a drowning man in water grasps for the surface, that sounds like way too much exertion, more like when my really fat cat tries to catch a small bug. Right in front of him. It’s the laziest thing you’ve ever seen, betraying a total lack of healthy energy or grace.

So funny story, IHSS (In Home Support Services) gave us a denial letter in the mail last week. I had to sign to receive it. The official letter was a joke of course. We had applied for this support almost three years ago back when I didn’t know how I’d go back to work with all of Laelia’s special appointments. And I had to go back to work or we couldn’t pay our bills, but no childcare would take my daughter. (We had little in savings since we had just spent our entire savings on a large, worthless emergency room bill. Long story short: I had chest pain and crappy school insurance. So Grossmont Hospital became the recipient of the money my grandmother had left me.) 

After Lali was diagnosed I called over fifty daycares to enroll my daughter, but they all refused. One daycare center allowed us a tour before denying us, saying it was dangerous for Lali to stay around other children when she couldn’t move her arms to protect herself from rough-housing. (False. She has done nothing but thrive around peers.) The last twenty or so calls were kindof an exercise in futility. I felt like I was racking up points in a video game. I would hang up with each one and laugh. I didn’t cry until I’d stopped at fifty, feeling I’d reached my quota. The YMCA stopped giving me referral numbers at that point too. We couldn’t afford the better daycare who took special-needs kids, so we were stuck with smaller, cheaper ones who wouldn’t take a liability… I mean disability… I mean perfect, wonderful child!  

So, where was I going with this? Oh yeah, so I applied for IHSS at this point. Copied from a website: “This program will help pay for services provided to you so that you can remain safely in your own home.” (I love how it makes the outside world feel scary.) Perfect! Anyway, I called to make sure they got the paperwork and it was being processed. Three years later they denied me in a letter.

Ha. Ha.

Also the other week I got an impudent call from MediCal (California’s Medicare). The rep started the phone call, in a rude tone, by demanding to come to my apartment. I had no idea who this guy was and couldn’t fathom someone this rude being a friend of mine who I’d invite over. I had to step away from my desk (at work) and ask who this was and what it was regarding. He angrily and impatiently said it was something I’d asked for. Once I realized it was MediCal I said I didn’t remember signing up for this. He rudely interrupted and said, “YOU said you needed this ‘immediately’! I’m looking right at the signature page. ALEXIS WESLEY JANURARY TWO THOUSAND EIGHT.” 

“Whoa, wait, is this the emergency help I needed for my three-month old? Years ago?! To help her to go to PT and OT for her arthrogryposis diagnosis because early intervention in these two areas is the only treatment for this incurable condition? And my baby NEEDED this immediately? And you ignored us… and it took weeks longer than necessary to get it? And she lost all this range of motion since we weren’t trained on her stretches that she now gets twice a day? THAT thing I needed immediately? And you’re calling me two and a half years later (your definition of ‘immediately’?) and demanding to see my home? Screw you!” *Click*

That felt nothing but good. And I’m a good girl usually.

I’m so grateful for wonderful government programs like Laelia’s Head Start school, and even her IEP that helps meet her needs at school. The system redeems itself here.  We actually accompanied our little girl to her first day of school last Thursday. She starts officially tomorrow, but Thursday we got to go into her classroom and do an orientation. Her teacher is WONDERFUL!  I truly felt this teacher wanted to work with us for Laelia’s benefit, like we were all one big team. Go Laelia!  What a special girl Laelia is to warrant such care and attention!  This teacher has experience with kids with cerebral palsy so she at least knows that the smartest little minds can have limbs that don’t always cooperate. Plus Laelia and CP kids have walkers, wheelchairs and other durable equipment in common. Her students from last year will also know not to touch the shiny red walker even though it practically begs to be played with.

Laelia’s walker now lives at school. It doesn’t fit in my car’s trunk and is hard to transport so we decided to keep it there. The walker has been hard. A while back when we asked Laelia to walk she moved a hesitant step forward by herself. It wasn’t enough to actually propel herself forward, but we cheered anyway! A couple weeks ago she managed to move forward without the therapist moving her left leg for her. Then for a second… a second and a half I think (say, “one one thousand, two…” and that’s it) she did this bouncy, run thing in her walker! (Technically it’s a gait trainer since it has a seat and holds her body weight.) It happened when we (her PT and I) had stopped paying a lot of attention to her and she saw a ball she wanted. So she kinda jolted her tummy and legs together and bam bam bam her little shoes made a noise I didn’t recognize on the smooth floor. I came home in tears! We had almost cancelled this appointment since I wasn’t feeling well. So glad we didn’t! Of course she hasn’t done anything remotely close to this since. :-/

Um… other changes… Well we just got some paperwork in the mail from Shriners for Laelia’s up-coming lower extremity surgery. It’s becoming more real. Another surgery that will lead to another surgery. But they happen in Philadelphia now. Just our random life I guess. She goes in November 16th.

And when she goes into surgery, she will be flying free of charge! I got an email from Midwest Miracle Miles who arranged complimentary flights to Philadelphia for the surgery! We were ecstatic! They even waived the baggage fees! Oh my gosh! Midwest recently combined with Frontier. So we couldn’t use Midwest Miracle Miles  on our last trip to Philly since Midwest didn’t have a hub in our area. But Frontier does! And mere months after the merge between airlines, we are reaping the benefits! Our coordinator, Barbara, is wonderful and has answered my questions even on weekends and Labor Day! I wonder when she gets a vacation or break? We have our flights! So happy!

We also have a date to start paperwork for Laelia’s power chair. It’s in two weeks. It’s a long process so we’ll get it probably around Christmas time, but on the advice of doctors and therapists and other smart people, we need to start this now.

This means we’ve started looking for a new apartment (*groan*) that does not have eight flights of stairs outside and one flight inside. Since our power chair can’t be lifted by mortal man, we need an apartment or house for rent that’s one story and not on a hill (so no steps inside). We’re having a hard time of this for many, various reasons. All of which, when I think about them, steal my life energy! (Nope, not overly dramatic here. ) *Pawing at bug… hard.*

We said goodbye to our babysitter, Megan, on Wednesday. She came over four days a week during the summer so this is another huge change for all of us. Laelia just announced that she’s going to see Megan and Joshua tomorrow and I had to correct her and say, “Actually you’re going to school tomorrow!”

“Megan and Joshua and school!”

“Um, just school honey.”

“Oh with my boyfriend?!” (she includes little boy’s full name)

*sigh* “Yes, school.”

I’ve made something like twenty-five batches of cookies in the last month. Gained five pounds. I’m really good at this now. Um, baking cookies not gaining weight. I can’t bake anything else, but I make the best chocolate chip cookie! I now dye them funny colors for Lali.

I brought four batches of multi-colored cookies to Disneyland yesterday. It was a Wesley family picnic outside of Downtown Disney with Linda and Phong and Grandpa and Grandma. Laelia loved it! It will be her last hurrah before school starts.

Okay I’m getting really tired now and will finish this post later. Laelia’s bag broke and she’s now taking my purse to her first day of school. This will be interesting. I’m putting her name on it and hoping that’s okay. Has anyone sent their kid to school with a purse instead of a bag or back pack before?  

In conclusion, lots of changes. Laelia is also turning three. Soon. NOT ALLOWED!

First night in a big girl bed!

But she looks so little in it!

Lali is beaming at the camera while daddy tucks her in.

My little girl is sleeping in a real bed tonight with a pillow and sheets! *sniff*  Her first real bed! And she is completely dwarfed by it! :)

We had to take out the box spring to make it low enough to the ground to be safe, but this hilariously meant that every time Charley or I sat on the edge of her bed we created a small sinkhole that Lali would slowly be pulled into.

We also had to leave off her Dennis-Brown bar (that connects her AFOs) since I didn’t want her to attempt to scoot off the bed in the morning and get stuck.  In my head she sleeps all night tonight like a good girl, and then instead of yelling her usual, “I’m awake! Come get me!” in the morning, she instead decides it would be more fun to scoot off her bed and go to her bookshelf and let her parents sleep in!

But if at midnight I have to pull that child out of her closet then she’ll be in so much trouble! 

Laelia is a big girl now. *sniff* And she needs a big girl bed. *sniff sniff* The crib would have lasted many more years (in fact I could probably fit a teenager into that thing and don’t tempt me!), but I wanted her to feel a sense of independence and growing up. She hit some major accomplishments this last year that has allowed us to even consider a big girl bed: successfully sliding off the couch, scooting around on her bottom and sitting up from a lying down position all by herself.

And it’s not like we had to go out and buy a bed; we had one already–Mama just had to put her in it!

*sob* My baby! *sob* :)

Part of the reason I put it off for so long was due to my loathing for all things “growing up”: from normal things like potty-training or (the pressure to start) walking to emotionally-crazy things like becoming one year closer to leaving Mommy.   The other part  of the problem was that I wanted to be there when she woke up for the first time in her new bed. With our staggered schedule, I leave for work before the sun rises, let alone the child, while Charley is there for Lali in the mornings yet gets home really late. So the switch had to take place on a weekend.

*Side note: Once school starts at the end of the month, we’ll have more time all together as a family!

Tonight I asked her if she wanted to sleep in a real bed. She responded enthusiastically, but that was probably because she thought this new arrangement would somehow put off her bedtime–as any last minute, evening plan does. But she went down without a fuss and grinned for the camera as I documented the moment.

Now if only I could use this gift of big girl bedtime accoutrements in exchange for bribing her into staying two years old forever… hmmm…