Standing tall!

New height: almost 38 inches. New height with crazy bed head: a good 39 inches.

Haha! This is what happens when your broken camera takes five minutes and two battery changes to take a picture. We get a fish face that got tired and turned into a weird Mary-Kate and Ashley pose! Hahahahaha! And the wild hair gets tamed every day and still looks like this.

Okay Laelia has given me twenty minutes to blog. The little queen is being gracious today. I’d better write something fast!

It’s been a hard week, but as with other major surgeries it’s always one week of bad (the first three days are terrible), then one week of hard followed by a lifetime of permanent correction. The difference here is that there is hardware inside Laelia’s knees that are always working. Last time she had something in her bones, it was simply to hold them in place. Now it’s actively working to straighten her knees. This will be harder than usual, but she’s excited to have straighter legs. They are so straight now that she can’t touch her toes! Her poor OT and I will have to re-teach her her how to put her pants on.

Unlike her other surgery where she was so “breakable” afterwards, this one requires her doing weight bearing ASAP. And she started standing the next day after surgery! It wasn’t pleasant, as you can imagine, but it wasn’t impossible.

Laelia is interrupting me to tell you about the pirate. She saw a man with a long beard in the waiting area and she yelled, “Mommy! A pirate!” She was completely thrilled. I wasn’t sure how to explain he was Amish, so I just let her think a pirate was there with his kid. Even pirates need health care.

Speaking of interruptions, Laelia is the queen of them. This week it has been just me and her all day every day. Today she’s letting me blog, but only two minutes at a time before, “Mama my leg hurts! Mama move my pillow please! Mama I want a cookie! Mama I threw the batteries out of the remote again! Mama I want to watch Tangled for the thirty-sixth time!” (Not exaggerating there. 36 times in eight days. Tangled is the new Finding Nemo.)

Oh and I made her cookies. It was a nice break to bake something when Charley got home. Laelia wanted a red cookie, but for as much red food coloring I put in the cookie dough they still came out light pink. So I added a ton of blue and green to it. That made it pretty dark colors.

Three guesses what color our poop is now. Oops.

Laelia is interrupting this blog post again to tell you that her imaginary friend was flying the plane to Philly! (The first plane ride.) ”Guy” has been Laelia’s imaginary friend for years. We don’t know where she got the name from since we don’t know anyone named Guy. But Chelsea made Laelia a tangible version of Guy that we accidentally left at home along with her sandwich for the plane and her walker that we had to return to Shriners. So she was sad, but when they announced the pilot’s name was Guy she was thrilled. I told the flight attendant that it made her day. Guy came after all. And he flew the plane!

…

Okay Laelia is taking a little nap. Time to blog some more! Interuption free!

She wasn’t really asleep. Now I’m back.

Okay she promises to sleep now…

So now that I have my blog to myself again, I wanted to briefly talk about Laelia’s care. Taking care of a little one dealing with discomfort or pain all day, every day, without breaks, who screams for you when you take two minutes to use the bathroom (ahem) is one of the most rewarding jobs I’ve ever done. And I’m serious. I’m behind at work, laundry, bathing and I’ve all but declared email bankruptcy since I don’t see me even reading all of them, I’m a day late at planning Laelia’s school meeting and I don’t even have a doctor’s note yet, but it’s rewarding work. Sometimes I can use my magic to make booboos better. Sometimes I can distract her out of losing it. Sometimes my cuddles are more powerful than surgery cuts. And often I just hold her and we cry together. But every day she gets better and better and it feels rewarding.

Our week of bad is over. Now the week of hard begins. Physical therapy gets kicked up a notch. Respect and no whining (and using the potty) get reinforced. But hard is not bad.

We have a gal living with us since she couldn’t stay where she was. She’s looking for a permanent place to stay. I was worried that Laelia would keep her up all night (and she has a bit) and that it would be stressful. But it’s been really nice. Our house guest does dishes for one thing. And Laelia looks forward to seeing her for a bit every night before bed. It’s been a blessing.

Our first full night home was Monday. Lois from our church brought us a meal. It was the first real thing I’d eaten that day. It gave me the strength to stay up until 2:00 am finishing up my work from home and taking care of my daughter. We got another meal last night too. It’s been a life saver. Truly.

Laelia is interrupting to ask if I’m stiiiiiiiiiiillll blogging? Now she wants to say that she hasn’t taken any pain medicine and she’s feeling better! (I snuck some into her yogurt before bed, but she doesn’t have to know that.) She is going all day without pain meds now, and just getting a half dose before bed. She says her legs are annoying right now. I’ll take “annoying” over “painful.”

Thanks everyone for your prayers! I feel like lately I’m always saying thank you, but I don’t mean it any less. Thank you.

Gotta go. The little queen is wanting someone to play with. I tried to tell her that that wasn’t exactly twenty minutes with all the interruptions, but she said she counted in her head. To what I wondered. “To twenty! Lots of times!” Ha! I tried to give her a math lesson but math hurts her legs. Yeah. *sigh* I’ll add that to the list of intangible things that hurt your legs, spoiled little queen.

I wuv her.

Future Doctor

We are back from Philadelphia with a princess in full leg casts. For those of you following the story, our daughter had surgery on both knees to try and straighten them. (Because of her arthrogryposis her knees are stuck in a bent position.) They did some releases in the back of her knees to straighten them as much as the contractures would allow, then they inserted eight plates into the fronts of her knees to stop them from growing. That way when the back of her knees grow, but the front of her knees don’t, it will straighten the knees over time.

As most of you already know we almost didn’t have surgery last Wednesday. In fact we were ready to go home every day we were there. And people were praying. Lots of people. And everything worked out. But it worked out in this miraculous way.

When I was a little girl I read this boring biography of Hudson Taylor. (Note: NOT boring if you’re NOT ten years old and it’s NOT required reading.) He’s the guy who prayed a lot and God provided, often last second or in a way that would make a good movie. Our last week seemed like that.

For reasons we cannot share yet, we needed this surgey to happen now. We had no idea what God was doing by delaying it. From all we knew it couldn’t be delayed or a lot of things would go wrong. So all we could do was pray this was happening for some great reason half the time and beg the surgery would just please work out the other half of the time. You see our daughter had a cough.

Thursday night I was lifting Laelia by her stomach and she coughed. But it wasn’t just one cough. It was a coughing trip. I thought I had squeezed the wind out of her or something. Then she finally said, “I just coughed like So-and-so at school!” Needless to say I yanked Laelia out of school the next day, cancelled the bus and mailed the form I was suppose to send with her that day. She had a very slight, occasional yet persistent cough all day.

Our good friends have a son who has the same condition as our daughter and who also fly the same 3,000 miles to the same doctor in Philadelphia. He had a cough once before surgery. He was fine and then the night before coughed just a couple times before surgery. That was all it took and his family was sent home to California. One slight cough and surgery was cancelled. Now Laelia had one slight cough. This was bad.

Saturday morning I called up Shriners to break the coughing news. Turns out I needed to run this by the anesthesiologist but they weren’t in on the weekends. I talked to a few people, was transferred six times, and finally the on call/charge nurse said to come on over. 3,000 miles and three airplanes over. So we did. And we prayed.

Sunday morning rolled around and we boarded three planes with the coughing monster. The weather had changed and we had hoped it was just allergies. She never had a runny nose or watery eyes or upset stomach or fever or sore throat or anything else. And she would be happy and hyper and fine and then once an hour double over and cough her head off. And it was a cough with a little something going on. Not a dry one. But still I’d forget about it until she’d do it!

Monday our appointment was at 2:00, but everything at the clinic ran late and we didn’t end up seeing anyone for three hours. Three hours! Finally we saw the doctor, his fellow and the nurses and told them in person about the cough. I guess no one I had spoken with on Saturday had passed the word along. At first the surgery was cancelled, and we started making alternative plans (that sucked). The nurse coordinator outright told us Laelia would not be getting surgery. It looked like Laelia and I would have to live in Philly for several weeks at one point. But they had to get the anesthesiologist involved for the final determination. Being after hours (now almost 6:00 pm), we had to come back the next day when he’d be around. So in other words, because of our late appointment we had one more night for the cough to get better.

And it didn’t.

So Tuesday morning she woke up coughing this horrible cough. She saw the anesthesiologist with the cough and he had her cough several times while listening to her chest. She was borderline with no other symptoms and even though we could hear something in the cough, they couldn’t hear it when listening to her chest. He had to pass us along to the head anesthesiologist who would make the determination on whether or not we’d be having surgery. Right before we met with him she coughed this wet, awful cough. We planned to pack our bags home that afternoon and try to get flights back that evening.

Then we met with the head honcho anesthesiologist. He asked her to cough. She didn’t want to. He asked her again. She coughed for him. And it was this beautiful dry cough. Then another beautiful, dry cough at his request. Then another! She didn’t cough again through our entire appointment with him, including a trip to the PICU for surgery instructions. I thought she was cured! It was a miracle!

As soon as we left the hospital she started back up coughing again. It was like everything she’d experienced for days was just put on hold until she could pick it back up again when we left. The same ugly cough was back! Surgery was scheduled for the next morning at 6:30 a.m. She had one more night to stop coughing or it would be cancelled. But at least we were no longer going home that night. We held out hope it would just go away. Maybe she would stop coughing!

Of course she kept coughing. She coughed all night. I couldn’t give her allergy meds since we may have surgery the next morning. I just waited it out with her and held her hand. I didn’t even know if I should prep her for surgery and scare her needlessly.

I had a very small panic attack that night which defied logic because I was ready to go home and at peace with surgery being cancelled. My panic was obviously not listening to how rational and peaceful I was. Charley noticed I wasn’t breathing and his reaction to that was to hug/smother me. I’m lucky to be alive.

(Note: I’ve never had a panic attack in my entire life. I think this was brought on by being woken up in the middle of a nightmare about not breathing and then my heart was already racing so fast it was just downhill from there.)

We arrived at the hospital at 6:30 sharp (3:30 a.m. California time) and she coughed in the waiting room. Once again I mentally packed my bags thinking we were going home.

Then she coughed up the elevator and through her dress change and during her vital checks. In fact she coughed up until the anesthesiologist entered the room. Then she was fine, as if she’d never had a cough in her life. And it was his decision to proceed with surgery after checking her chest for the tenth time.

It was like something out of a movie. If I had reached the right person who told me to stay home when I called Saturday night there would be no surgery. If our appointment had not been three hours late and I’d met with someone who listened to that awful cough on Monday there would have been no surgery. If she had coughed during our Tuesday appointment with the head anesthesiologist there would have been no surgery. If she had coughed during OR prep for the anesthesiologist’s final check then no surgery. When it really mattered, she became a perfectly healthy kid. But the rest of the time she was coughing!

Surgery went well. She opted not to have the knock-out meds and waved goodbye with such bravery as they wheeled her into the OR. She admitted she got scared and cried when they put the mask on her face, but overall she was very good.

Back in the waiting room I let out a breath I’d been holding for six days. I was relieved for a brief moment before it hit me that my daughter was in surgery. But five hours later and she was out. Her epidural had worked, her cough had cleared and they had gotten a few degrees of range in her knees! In the coming two years the plates in her knees will hopefully get her even straighter!

No cough!

Epidural working!

One of the first things Laelia said after waking up from surgery was, “The next one to have surgery will be my brother. I’m gonna hold his hand and make sure he’s alright. I’m going to give him his medicine too!” (She seemed a little thrilled with that thought so I gave her a look. She quickly amended,) “Because I love him.” Someone is happy that this is her last big surgery for a while.

The first day after surgery everything went right that could go right. Everything. Then the day after that things went wrong. Laelia’s epidural had slipped a bit. The doctor recommended they pull it out and see how she did. We’ve made some stupid decisions before, but this one had two hard days of consequences to it. She was in constant pain. And they threw every medicine they could think of at her. She had IVs in both hands and was on morphine, Valium, Tylenol, Codeine, something for the itching, something new for the panicking and something strong to help her sleep. As the first hard day progressed and they could not get on top of the pain they finally started doubling all doses. She went 35 hours without sleep because of pain. She made the nurse cry. She made us cry. She was darn pitiful. Finally, since she was eating, drinking and pooping, I asked them to discharge her and we would be right down the road and come back if there were any problems. We took her back to the Ronald McDonald House. Just being outside the hospital worked wonders. She got her first real sleep and so did we. Four solid hours. She woke up a new girl!

For as hard as her recovery has been, it is not as hard as the surgery she had a year and a half ago when her epidural failed. That was much harder.

Sunday night we took two long plane rides home. We’d only been home about twenty minutes before she threw up all the contents of her stomach, including her pain meds. She had a painful, sleepless night last night and a painful morning all morning. I finally snuck enough pain meds into her food to get her resting again this afternoon. She is refusing pain meds and it’s hard to get them into her! It’s my four year old verses my sanity! She cries and cries that her legs hurt, but when I offer her pain meds she won’t take them and spits them out. Also they have me doing physical therapy with her already (if you can imagine this please say a prayer for me and for her) so just add that to the torture. All and all it’s been a hard week.

But we knew it would be bad going into it. What we didn’t expect was any of the good times. It was downright thrilling to have to make the pediatric crutches Laelia uses longer because she had gained a couple of inches overnight! Laelia was also praised for being the sweetest little thing in the PICU. And she was so diabolical even through her pain. She had a speech about what hurt and what she wanted done about it that she threw at anyone entering the room–even the janitor! She directed her menu like a queen. When she was transferred out of the PICU she had me first take her to every floor of the hospital on her way to her recovery room so she could tell them all that she had just had surgery in an attempt to get presents out of the Shriners staff who seem to always walk around carrying goodies. (If it weren’t for all the medical stuff this place would be Kid Heaven!) She walked out with a monkey from the OR, a bear from PICU, a doll from the therapy floor and a doggie from somewhere. It is a privilege to be this little girl’s mommy. She is a joy!

Today Laelia stood up tall by herself with the help of crutches and her casts. She looked at me and asked through gritted teeth, “Mama? Am I tall enough for the big rides at Disneyland?”

That little player is determined to get a trip to Disneyland out of this thing too.

My pretty girl.

Doctors told us ugly things.

Then we met this guy.

And started doing lots more PT.

And OT!

And proved them wrong.

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

Which means no more knee standing for a while.

And pretty girl goes back into casts.

And we’ll see lots of this face.

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

(Photo credit.)

And *maybe* this:

(Photo credit.)

And why the heck not:

(Photo credit.)

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

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

We need this:

(Photo credit.)

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

Laelia’s first pair of high heels!

Getting ready to do the princess walk with her pediatric crutches!

She walks much better! Click here for the video!

And she stands/balances much better! Click here for the video!

So after: 1. seeing my favorite AMC’er with wedges duct taped to his shoes, 2. getting an email from someone in our AMC support group telling me she saw Laelia’s video and that I need to put a 1 cm cork or something under Lali’s heels, and 3. a random person saying, “You know with her knees bent like that it would be hard to walk,” I FINALLY gave the girlie some heels.

But if her doctor asks then we call them “orthopedic wedges.” That’s just ‘tween us girls. *wink*

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

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

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

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

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

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

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

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

Plus I’ll miss that little drunkard!

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

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

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

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

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

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

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

7. Rest.

8. Peace. She’ll be scared.

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

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

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

Thanks so much!

“I do!!!”

It’s just an evaluation to get a real appointment, but it’s with Sylvia, our own PT!!! So I’m thinking we can at least get some exercises to start with Laelia. Yay!

So Sylvia’s (and everyone else’s) schedule was completely full. And I had been playing phone tag with two scheduling people at Children’s Hospital (five phone calls total just today) before I decided to drive up there and be annoying in person. And who did I run into while waiting in the giant, slower-than-dial-up line? Our PT! The timing was completely perfect! She had a one minute window as she came out to grab a patient and disappear again, and we happened to be standing directly in her path! We had not planned this at all. So I very quickly explained our situation as she walked by us. She said she wanted to see Lali, especially before we made a switch to CCS, and to tell the people up front that she’d do anything to work it out. Well fifteen minutes later I finally got to talk to the person I’d been playing phone tag with in scheduling. (It’s always kind of weird for them when I just show up. I’m sure I’m on some list somewhere that says, “Watch out for this crazy parent!”) Anyway she told me that she was about to “burst [my] bubble,” because she just could not work out an appointment for us until February. Then I explained that I had been in contact with Sylvia (literally just minutes earlier for a few seconds, but I made it sound more in depth than that) and that I was under the impression something could be worked out. (I’m not easily turned away, not after three years of this.) So I waited while she went back and spoke to Sylvia. Then some scheduling magic happened after Sylvia agreed to move her time around. So as of 5:15pm tonight we have a PT eval for tomorrow! Yay! Our insurance is still not worked out so it can’t be a real appointment, but this is much, much more than we had hoped for! Plus I just can’t describe how the timing had to be so perfect for all of this to have worked out!

So I started out my day on maybe three hours of sleep. Laelia went to bed last night at 7:00pm and screamed until 9:00pm (that’s with pain meds). Then she was up at 10:00pm. Then she was up at 3:00am. Then she was up at 5:00am when Charley finally removed her painful straps and I tried to get ready for work while she and her daddy got a couple more hours of sleep. It was the worst, tearful night last night and my brain was mushy mushy goo this morning. I was also upset when I found some blood in her sock last night. Poor kidlet.

Swollen, hurty foot with broken skin.

I spent a long time on the phone today. I was called back by one lady from Shriners this morning who was completely unhelpful. Apparently we’re not getting PT with them any time soon. This lady kept interrupting me to the point that I had to say, “Just let me finish my sentence!” At one point she (rudely) said, “You’re trying to speed up an internal process you really don’t know anything about.” I responded, “Yes, you’re exactly right!” But she didn’t have a sense of humor, and when I asked about a pending prescription I had requested she practically hung up on me! My my. Anyway, not really a person I deal with like Mimi or Debbie or anyone I care about so I didn’t care much. I had too much else to do. One friend of a friend of a family member I called this morning was an assistant PT who suggested a doctor in Delmar who had a PT, Yoga instructor (turned out to be Pilates instructor) and chiropractor in his group. So we called them up and they had a cancellation for this afternoon! I printed all the paperwork off their website and started filling it all out while Laelia played with her duckies in her bath. (Yes some pages got a bit wet.) Then we ran over there.

We saw the doctors, and while they were very interested in her (she was their youngest patient), they didn’t think they could help her. In fact their PT couldn’t even see her because the kind of PT they did was geared toward a different clientele and wouldn’t work on a small child. But one guy we saw was a chiropractic orthopedist. (The only one in Southern California.) And he was very interested in seeing if he could improve Laelia’s life a little. He had no promises, but he was willing to try different things and give us a discount (since this would be out of pocket). I’m very interested, but we’ll have to discuss it.  

I also had a good twenty or thirty minute conversation today with an Anat Baniel practitioner (for children) slash Feldenkrais practitioner. Apparently another AMC mom (aka, a mom who has a child with arthrogryposis who we met in Seattle) swears by this. I’ve been watching videos of how this method helps kids with various disabilities (mostly CP), but I’m still not sure exactly how it works. According to the lady I spoke with at Moving to Learn, Inc. it does what PT doesn’t. When PT focuses on the injured limb and working with it, this would focus on everything else she can do (all her working parts) and motivate her to move the injured limb by encouraging a whole-body approach. I’m a little resistant to their stance of getting children out of AFOs (since even though we hate them right now, they work for arthrogryposis clubfeet), but I am tempted to give this a try. I’m tempted to give just about anything a try. As long as this is more science than spiritual then I’m there. I definitely already really like the lady who we’d be seeing.

In the meantime I’m so dizzy. The next step is to see a chiropractor. Then an eye doctor. I’ve already seen an ER doctor (when the vertigo was out of control), had an MRI, saw a neurologist and had two appointments with an ENT. Add all that to seeing my family doctor too, and I’m vying for most expensive medical costs in this family. I feel so out of control with the dizziness. I almost went through a plate when I was doing dishes the other day, but realized I hadn’t actually moved. It’s nauseating. It starts to get bad everyday around 11:30am and by 2:00pm I’m miserable if I’m not lying down. Also I’m getting headaches that accompany the dizziness. I have a couple more leads on getting rid of it. Once I’ve exhausted those I’m not sure what I’ll do. It’s got to go away soon, right? Right?!!

So all in all I think some optimism is warranted. For the first time in a while I feel like things may just work out, even though many things (my job for example) are still up in the air.

Oh and my wonderful husband did four loads of laundry, cleaned up the living room, did the dishes, cleaned the counters and took out the trash today while I was out with Laelia. My hero! He also “made” dinner, which for him is driving to Chick-fil-A. Love him!

I’m also blown away by our amazing friends. They are constant encouragement and support when everything is falling apart. I have no idea how this many amazing people weasled into our lives. But I wouldn’t change it for anything! We’re definitely not alone, and we know it because you all tell us. Thanks for the referrals, kind words and offers of all kinds of support! It’s so appreciated!

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

Weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!

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

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

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

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

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

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

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

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

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

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

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

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?)

Friday was the best day. We had our flights scheduled for 5:00 pm that day, but we were planning on delaying those flights because I didn’t think there was any way we could go home. So when our doctor discharged us at noon that day I was shocked!  It had only been three days since her surgery, but Laelia was already doing so much better. She looked battle-damaged and weary, but her little imp smile had come back. Shriners was wonderful and let us borrow a wheelchair for the trip home. (Our insurance is changing during recovery and wouldn’t cover it so Shriners just handed us one.) And they fitted us for a new car seat that would be better for her wide casts and took our pink car seat in a temporary exchange so we wouldn’t have to carry them both home.  

Car seat fitting.

Watching TV in her wheelchair. Mama is resisting the urge to pinch those cheeks!

Friday was a great visitor day! Just three days after surgery and she was already so so so much better! Plus we finally got to meet Tracey Schalk in person!

Tracey is on the right. We’d been friends online for a while. Tracey is great! Anytime there is someone with AMC in Southern California, Tracey inevitably finds them and sends me their contact info from Ohio! Tracey came to our room and gave Laelia a surgery present! Tracey and her mom, Cheryl, had emailed me a lot about Shriners in Philly and how to get Laelia care there. They, along with the support group (amcsupport.org), never lost hope in Laelia’s future even when five doctors did. I was so happy to finally meet them! And I love the Dr. van Bosse Fan Club shirt! I want one!

Friday is also clinic day. So we knew a few other kids with AMC would also be there! It’s so rare to find kids with AMC, so it’s weird having so many in a waiting room! This really does feel like AMC Mecca sometimes. So using our new borrowed chair we went down to the forth floor. We finally met Tammy in person too! I recognized her from her facebook pictures. And her daughter, Sophie, and son, Ben, both have arthrogryposis. Laelia is Sophie’s “mini me.” When Sophie learns to do something (like drink from a cup without using her hands) then we see the video and Lali is soon to copy her. Sophie was so cute; Charley was totally charmed.

When we were leaving the forth floor and waiting for the elevator, a lady I’d never met came up to me and asked if I was Laelia’s mom. I said yes. Then she looked over to spot my daughter smiling at her and verified that this was indeed Laelia’s family. Her name was Anna and she wanted to thank us for our blog and tell us it had been one of the things that had helped her get her son with arthrogryposis in to see Dr. van Bosse! She had just adopted him from China! You can read their story here. That was so neat! It gave me goosebumps! And of course during their stay, Tracey already had them connected to another family there who had adopted a little girl with arthrogryposis from China. Wow!

We had to say goodbye to our new friends and pack up to leave. We learned what pain meds to give Lali and how to change her bandages. (By the way, they didn’t make us go to a pharmacy to get her meds, they just delivered them free of charge right into our hands!) Then Laelia announced she was ready to use the potty! So after getting a potty and figuring out (with the help of a nurse) how to get her on there, and waiting through five minutes for the waves of pain to die down after being picked up and transferred onto it, she went poo poo in the potty! I couldn’t have been happier! What a great day! That may sound silly, but it was such a relief, and she looked so much more comfortable after that. 

At noon I ran back to the Ronald McDonald house to check us out. I followed the check list and changed the sheets, made up the beds with the comforters, folded the blankets, turned off the heater, cleaned the bathrooms, wiped down the walls and vacuumed the room.  I made sure it would be perfect for the next family in our situation who would come for comfort and rest. Then I took the trash out to the dumpster, grabbed some Cheerios out of the help-yourself pantry and paid our bill in full which totalled less than one day’s stay at a hotel! Love this place!

Then we decided since we had two and a half hours to spare that we would drive the 40 minutes to the airport, drop off Mama and Miss Post Op, then Charley would drive downtown and return the rental car and take a cab back. This was an alternative to going downtown together and then having to take a shuttle back. The plan would have worked too, except for the meddling traffic. So last minute in the drop-off zone of the airport we had to move all our stuff into my bag in case we had to fly back without Daddy. Charley helped me carry the kid in her car seat, her wheelchair, our giant bag and a back pack into the airport and then he drove off towards downtown. I watched several people walk right past me as I slowly dragged everything at my feet one inch at a time. A couple in their forties with one bag between them stopped behind me and I thought they were going to help me, but they had thought I was in line because I was going so slowly. Then they complained under their breath about me being in their way and moved past me. A couple of security guys stood there and watched me. Finally I made it all the way to check in–dragging a car seat with a kid in it, then going back and dragging the bags then dragging the kid in her car seat a few more inches, repeat repeat repeat. It took me half an hour. At the front I set up wheelchair assistance for the rest of the trip and then waited for assistance. As I waited I worried about my husband who was now very late. An airport employee took my daughter (only airline employees are allowed to pushthe wheelchair) to our gate as I followed. Charley wasn’t at the gate either. In fact I was starting to steel myself for a solo flight home with post op kid who needed pain meds on the plane. Then I saw Ryan’s family and realized I wasn’t alone. We found out that our buddy, Ryan, and his family would be on the same flight back with us! These kids are practically twins. So cute!

Going home with our read-headed twin, Ryan!

Charley showed up minutes before boarding, then he took off to get a slice of pizza! That turkey.  Laelia slept on the plane like a champ, even though she was somewhat restless, tossing her head around. But right before our decent into Denver, Laelia woke up crying out in pain. Her legs hurt her and she was grabbing at her casts, face contorted. We decided to unbuckle the car seat to lay her across our seats and give her the liquid meds. She didn’t swallow them of her own volition so we had to lean her back and force it down her. That’s when we realized that the seat belt was stuck on the inside of this giant, borrowed car seat. I was near tears and she was crying in pain and we considered cutting that airline seat belt off her! The problem was that the car seat back was too narrow. So you can buckle it, but you can’t lift the darn flap to unbuckle it. We didn’t have this problem in the car since it was a push button release.  It took a long time to get it unstuck; Charley cut up his hand doing it. The whole time this guy sitting behind us kept saying super helpful things like, “His ears are just not used to the altitude, he’s fine Mom.” (Taking out our daughter’s earrings for surgery made her a boy no matter what pink dress she was in. And could he not see my child was in full leg casts???!) Finally we were able to get her out, give her meds and put her back. That’s when the person in the middle seat in front of us leaned his seat back and we saw that the seats went too far back and if the lady in front of our daughter leaned hers back it would really injure her! So diving forward, Charley explained our situation to the lady in front of us and we offered to switch seats with her if she wanted to lean back. She smiled and told us she realized the situation the moment she got onto the plane and had already decided she wouldn’t risk leaning back with that poor baby behind her. Whew.

For the next flight after a couple hours lay over we asked the boarding agent to move us to the front of the plane because of the leaning-back situation. He changed our seats, but it turned out that the car seat was too wide for the front seats with their fixed arm rests. So we had to switch seats with the second row (who didn’t like that they couldn’t get to their bags anymore) and the young lady in front of us was given free tv by the flight attendent for the flight if she promised not to lean back. She complained, but agreed. When we thanked her and offered to switch seats if she wanted to lean back she just said, “Whatever, it’s fine” but continued to complain that she’d had a long day of flying… childless, pain-free flying. I wanted to smack her.  

When we arrived in San Diego I was so ready to be home. Laelia was due for more pain meds and I wanted to put her in her own bed to let her finally sleep soundly. Unfortunately the wheelchair assistance I had set up fell through. We waited 25 minutes for a wheelchair and the lady at the gate said, in effect, “too bad.”  They said it was too late for wheelchair assistance (after 11:00 pm) and the couple of pages they sent out over the PA for a wheelchair were unanswered. Our own wheelchair was downstairs in checked baggage so we were stuck. Charley started to slowly drag her car seat down the airport corridors. After ten minutes of dragging we saw an airline guy walk by with three wheelchairs! We were relieved and waved him down to explain through the exhaustion that one of those was for us. He asked what airline we were on and when we said Frontier he explained that these were for American airlines and he left us there. So we dragged her in her car seat the long length of the airport. Every time she went over a bump she cried out in pain and I snapped at her dad. I was ready to kill someone at this airline. I hate traveling to Philly. Hate it. Hate it. For every airline person who is kind to us, ten are not. Seriously.

When we got to our bags downstairs, Adam was waiting for us. He lifted Lali’s car seat up with her in it and carried her right out to the parking lot! Adam drove us home and we walked in the door to, not joking, this:

Clean!

Clean! (The stuff on the table I put there afterwards.)

Labeled tubs magically appeared in my cabinets.

Everything was organized!

No more “junk” drawers!

The kitchen cuboards were cleaned and organized. A spice rack appeared in there!

Laelia’s room was the best part!

It was so much roomier with the crib stored. The cubbies were new and everything was clean! Even all her clothes were folded! She loved it!

The night before we flew to Philly, Lauren and Chelsea had come over to clean. Lauren tackled my kitchen like a pro while Chelsea took some notes. I left a key because Chelsea said they were going to “finish up” while we were gone. Well apparently for the five days we were gone Chelsea and Adam and Brenda and Laura and Dorothy cleaned and organized our whole apartment! I can’t express how wonderful this was! It was like walking into a stress free environment after days of stress! At first when we stumbled in Friday night I did noticed it was clean and I was very thankful, but it wasn’t until I gave Lali her medicine and put her to bed that I was able to relax and notice my surroundings fully for the first time. We slowly realized the extent of the work put into our place. It is rearranged to make best use of space. Things were purchased that we didn’t own to make it more organized. And Charley and I went around opening random drawers that were all completely cleaned and organized! It was like Christmas morning! This was an overall giant cleaning/organizing  job that must have taken hours and days and so much effort–I can’t even imagine!

Laelia slept for ten hours that night, making it the longest stretch of sleep she had gotten in almost a week. Her record before this was four hours. Being in her own bed, surrounded by her toys instead of monitors, did the trick. It almost made flying that Friday (a crazy endeavor) worth it.

In the next couple of days (through the weekend) we had some fun worries when her incision site decided to make us needlessly worry.

Is that spot gangrene?! Does she need antibiotics? Nope. It was fine. But we panicked and called the doctor anyway.

What in the world is this large purple thing that’s hard to the touch and popped up over night? Turns out it’s bleeding beneath her skin. It hurt her one morning and she had me rub it. Then this happened. Doh. So I emailed this picture to Dr. van Bosse and got an email reply immediately that calmed my fears. (What doctor emails you back? And quickly?!!) 

So the above two pictures were the cause of some panic, but looking back on this whole adventure Laelia is healing well, recovering nicely and on track for getting her casts off on January 7th!

Also one thing that made everything better, and this was my life saver, was apple sauce! Her liquid meds are best taken with apple sauce because it covers up the taste beautifully! I haven’t had to force anything down her throat since discovering this! We tried mixing it with other things, like chocolate pudding, but nothing works as well. This is so much better than having to squeeze those little cheeks and make her choke! Apple sauce. God’s gift.

Laelia hanging out.

Today marks exactly one week since her surgery, and I can’t believe how miraculous this kid bounces back from this stuff! She’s doing well. We can now pick her up using a blanket under her for support and it only causes her a little bit of fussing that she quickly gets over. As of yesterday (Monday) she went all morning and afternoon without pain meds. Now she’s down to taking a little something before she sleeps. She’s got that cute little personality back and she is already wanting to help with laundry again and play with her kitties. It’s gonna be okay. People told me it would be “a hard week,” but I never knew exactly what that meant until now. Yes. It’s a hard week. The first 24 hours are the worst, by day three it was a lot easier on her and just seven days later she’s singing and laughing and playing again. I have a lot to be thankful for right before 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.)