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.

It’s been fun watching this go viral among our AMC family on Facebook.

Picture by Chelsea Powell

Words by Tracey Schalk

Edited by me

<3

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 has been standing without assistance (using only her leg braces) since Saturday night. Since then I’ve taken pictures, marveled, took her to PT to hear her physical therapist squeal, and thanked God a ton. It’s been great!

But since this is all so new the implications of this new ability didn’t sink in right away. Last night they did.

The surgical site on Laelia’s left leg has a red mark on it so we took her to Rapid Care a few weeks ago and they said it was fine. But the right side is completely healed and the left side is still oozing and bright red so I dragged her to her pediatrician’s office last night. Long story short, it’s still fine. No infection. That’s not the point of the story. Here’s the point: When you take your child to the pediatrician they have to weigh them.

Laelia has had to use the infant scale at the doctor’s office her whole life. She’s terribly outgrown it as you can imagine and she’s at the age where it’s embarrassing to use. Even though she has been able to stand while leaning over something for a while, you can’t do that with a scale! You can’t even hold Mommy’s hand! You have to stand all by yourself without a walker or bar or crutches or anything.

So last night for the first time in her life, Laelia stood on a scale. By herself.

It’s such a little thing, but I’m blubbering over here. My baby can stand! *sobs*

Walking in a walker!

Rolling on a ball!

Beating us at cards.

She knows how to play Go Fish and Uno now!

Spelling her own name and writing it herself!

Playing the “geetar” on her shirt while Davie plays the real one.

Sad party! Laelia evokes all sorts of emotions in the menfolk.

Spying on the adults.

Reaching her face!

Did I mention that one doctor said that she would never reach her own face?

Hey doctor! You think that shell got on her nose by magic?!

Mommy even cuts up her sandwiches. Life is good.

DISNEYLAND!!! Oh boy oh boy oh boy!

Hanging out with Ileana!

Ileana gave Lali this little tiara.

Being a goof.

Next in line. “I have my feather! Ready to fly now!”

Too short.

Trying on her glasses for the new Star Wars ride, but she wasn’t tall enough (by three inches). So her nice parents went without her (taking turns). Mama ended up being the Rebel Spy!

That hand over the face (meaning she doesn’t want anything else to eat) was hard to do! She’s having to claw her own face to keep it on there. Funny thing.

It was training day at Disneyland. Handwritten note at top says, “It’s OK. Trust me.” (To let Laelia go through the back of a line without a power chair.)

Lali and Daddy. Awwwwwww.

All this last week I have been adjusting to my new role of housewife, super PTA mom and work-from-home employee. I’ve been failing miserably! Thus no blogging this week. And before this blog post turns into a whine fest about how much I miss my normal job and boohoo I have to do dishes now, I’ll start talking about Laelia. :) People have been asking about the kid to see if she’s doing okay after surgery. She’s doing so well I forget she had surgery last week. This was what she was like right after surgery.

Last Saturday she was begging to do some weight bearing on her knees. Since physical therapy for the first week is Laelia-directed, I let her do it. I was still a little afraid I’d break her, but she was harder on herself than I would have been. With a little  help from Dora the Explorer, Lali logged over an hour of weight bearing! She’s very independent and nothing will hold her back.

I cringed thinking of her sore hips, but she wanted to hear daddy’s story while holding her toes.

Laelia’s school: Last Monday I had a school meeting to determine if Laelia could go back to school. It was going to be with a nurse or health person of some kind. Anyway when we landed in San Diego and I listened to my messages I had missed two calls from the school saying that the health person was not available for another week! I thought, “Oh no! No school for a week and me with a new job on Monday!” Well thankfully Sunday night our SEEC (Special Education… something something) coordinator, Sue, called and after I explained that the surgery went really well and was even technically “an outpatient procedure” (Laelia didn’t stay at the hospital overnight… and she didn’t really need to stay very long at all) then Sue suggested I email the school to tell them since I couldn’t call on a Sunday night. So I emailed the director and hoped for the best. I worried about it all that night despite trying not to think about it. The next morning I showed up for school and once people saw Laelia and that she wasn’t in pain or in casts, and she didn’t need any medication of any kind, they let her stay at school that day! When the director said, “Okay sign her in,” my brain didn’t register the words and I was all, “Sign her in for what?” :) Before I had been told she would definitely not be allowed to go back to school on Monday, but since she was fine they let her! They are saving our big meeting with the health person for after her bigger surgery this spring.

Laelia’s bus: Tuesday morning after the bus didn’t show up I fought with the bus people over the phone for 40 minutes. A weird thing happened–they put me on hold at one point but without actually putting me on hold. That meant I could hear them dealing with another parent who was very upset. I also could hear them dealing with her in the way they deal with me: with the tough talk, “I’m sorry ma’am, next time call at least two weeks ahead of time… uh huh… well then you should have stood in a more visible spot… uh huh… well it’s our procedure to…” and so forth. When they hung up with that parent I heard them say something like, “Well she’s right. We didn’t do our job and now her job is in jeopardy. I feel for her.” Then they got back on the phone with me!!! And at this point everyone just seemed more human, and I felt more confident in what to say. Long story short, a bus came that morning (very late) for my daughter, and after that her regular bus drivers (whom I adore) have showed up every morning and afternoon since!

Mommy works from home: The great thing about this shift in my job is that I’m able to attend every school meeting. Like Thursday night I went to a Community Advisory Committee meeting for parents and staff who support students with disabilities. It was boring as heck, but I ended up meeting people. In fact I met someone who would be able to assist me when we return back to school after Laelia’s next surgery! My goal is to go to EVERY school meeting in any way related to my daughter’s needs or education from now on. It’s really confusing, but I’m learning stuff! Like there’s something called SELPA and it stands for “Special Education… El… Pa.”

One of the perks of working from home is that I no longer panic when Laelia gets kicked out of school. Like for example we were told Thursday that there was no school on Friday for Veteran’s Day. (We had missed the reminders since we were in Philly.) In my former life that would have meant some mad scrambling and most likely a day of Laelia and Chelsea bonding while Mommy went to work. This time it meant working from home while my daughter was home! That was exciting for all of three minutes. I was looking forward to this new dynamic of working while parenting. I now know this is impossible. Utterly, miserably impossible. I’m never trying it again. It doesn’t work. No good. Nope.

Next time I will parent during the day, and then start work at 3:00 a.m. when work can actually get done.

Laelia’s shots: So Laelia was driving me crazy-go-nuts on Friday since I was trying to work from home at my computer while answering her incessant calls every five seconds followed by the whining and crying of an only child who is being ignored. Laelia had a doctor’s visit that day, the school reminded me, because even though our lives are surrounded with doctors, they don’t count! Without a physical from a local doctor Laelia would not be allowed to return to school. In the waiting room a nice couple holding a newborn picked my brain about pediatricians while they offered my little angel a mini Hershey bar. She ate half before her name was called. After her name was called (Lala or Layla or Layloni, they were close) evil Mommy took. her. candy. *gasp* Mommy mentioned something dastardly about “eating it later.” This led to screaming the likes of which has never before been heard. Her first two attempts at the eardrum-piercing scream were too breathy, but the third attempt nailed it. She had people on the other side of the office poking their heads out from behind their paperwork to stare. Telling her that because she screamed she was now getting no more chocolate did not help matters. Threatening her with a time out got the response of, “You can’t give me a timeout, there’s no timeout place here.” Wow. Let’s just say it takes a lot to make me laugh hysterically in public, but I did. Then I said in a sing-song voice to my precious little daughter who I was not strangling (so, WINNING), I said, ”I hope you get lots and lots of shots today!”

Okay the truth was that I honestly did not know she was getting any shots that day. I never would have said that if I had known she was getting shots that day. I thought she was just in for a physical where they checked her tummy and stuff. But she was also in for four shots. Four. And when the nurse told me this in response to my sing-song statement, well that sobered me up real quick. I immediately said, “Oh honey you are getting shots today, but I didn’t know! It’s not because you didn’t behave correctly. Shots are good for you and they make you healthy. They are not a punishment.”

Nothing I said mattered. For the next half hour everyone within the building heard the loud wales of, “Iiiiiiiiiiiii Doooooooooon’t Liiiiiiiiiiiiiiiiiike Shots! Nooooooooooooooooooooooo! I doooooooooooon’t waaaaaaaaaaaaaaant!!!!!!!!! Waaaaaaaaaaaaaaaaaaaaaaah!!!” I told her that if I could I would take one for her. She got hopeful and said between sobs, “I wish you could take all my shots!” Stinker.

After the pokes they gave her a treasure box toy for being so… um, loud? She happily strolled out of the office cheerfully playing with her tiny plastic camera. I didn’t strangle her once. Where’s my parenting trophy?

More parenting stuff: In other news, I’m starting to regret telling my daughter about the time I found a horse outside. He had escaped from the fair and was wandering the Carl’s Jr parking lot all done up like a faerie tale. It was probably the most exciting thing that ever happened to little kid me. I ran up to him and held his reins. I had no idea what to do next, but was grinning my head off. My sister had to tell my mom that I had a horse when she showed up. Her facial expression was priceless. It was a great memory. I told Lali about my horse during our bedtime story. (A quick aside about our bedtime stories, in the beginning it was all Bible stories and great works of literature. It didn’t take long to devolve into Disney princesses. Now I’ve started telling her stories about my childhood and how her daddy and I met and married. I lost my mom when I was nineteen and I regret not knowing more about her precious memories. So now I make an effort to share mine.)

But now I’m constantly hearing in my daughter’s overly excited voice, “The next time you see a horse outside get me!” Then her tone drops to a serious one. “I want to ride him. I will ride on him. On the horse.”

Tonight I taught Laelia how to play Uno. We take out the wild cards for now, but leave in all the other ones. She beat me three out of three games! I only helped her the first game! She’s really good at this even though the box says ages 7 and up. Because of the arthrogryposis in her hands we hold something (in this case the Candyland game box) between us so she can lay her cards out without having to hold them. And that way I can’t see her cards. Well not that I’d need to since every time she has a turn she starts out by announcing every card she has. (It makes the game take ten billion years to finish. “Oh that’s a green seven. That means I need a green card or a seven card. This card in my pile is red and it’s a six. This card is blue and it’s a zero. This card…”) The discard pile and deck are to the right of the Candyland lid so we can both see them and get to them. It works really well! Well until she has to reach over to grab a card. Then I catch her starting to poke her little nose over the lid to see my cards. She says, “I’m just counting them!” Or, “I’m just seeing if you have a four!” So, you know, it’s totally justified. Still I don’t know how she’s beating me. I’m not letting her win! Maybe I need to start enforcing the rule where you have to say “Uno” when you have one card left. Instead she does a little dance and sings, “I have one card left! I have one card left! I’m gonna wiiiiiiiiiiiiiiiiin. You’re gonna loooooooooooooooooose.”

I respectfully reply, “You mean ‘Uno’ dear.”

Sleeping Beauty is out of surgery!

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

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

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

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

You get them drunk. Really drunk.

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

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

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

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

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

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

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

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

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

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

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

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

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

Three airplanes later and Daddy finally joins us!

I got lost at the airport tonight because of the weird roads (PHILLY!!!), but we did find Daddy and then we went to meet our friends at the local diner.

Our buddies!

I had my first Philly cheese stake. Now I can say I’ve done it.

Sadie (also an AMC’er) and Laelia showed off their standing and walking skills at the diner.

Once we got home, and after my husband showered, we were finally feeling like a family again. That is until Charley showed me that he brought with him a ton of technology so I can blog! (Bye honey!) So I’ve been lost in my computer for the last couple of hours while my husband has been putting up with all of my daughter’s new discipline problems developed over the last nine days. Hehe.

But seriously we have missed Daddy. He is loved. He is appreciated.

Good news! We got a call this morning that Laelia had been bumped up to the first surgery of the day tomorrow! That’s a super great answer to prayer since my daughter is terrified of the hospital. I was so afraid that she would be a scared, shaking mess for the whole day, but now she’s first up!

We have to leave the RMDH at 6:15 a.m. to get to the hospital by 6:30. That will be difficult since we never got used to Philly time and have been sleeping in until 11:00 a.m. every morning and calling it 8:00.

In other good news, Laelia is not sick! No coughing, sniffling or sneezing! That’s a miracle since so many illnesses have been floating around.

Tomorrow is surgery! Finally! I see a light at the end of the tunnel!

Update: It’s now midnight. Laelia is not sleepy. Kill me now.

Updateness: Midnight has come and gone and that cheese stake is not sitting well. Maybe some Canadian candy will help…

Another update: It’s official. We’re not going to get much sleep tonight.

“I’m a bunny dressed up like a duck!”

“And my mom is Mama Bear!”

Mama Bear was the scariest thing I could think of, especially if you’re a medical professional. And since we were trick or treating in a hospital this year I figured I was pretty intimidating.

I have better pictures than this one but I love the shark grins on these two.

We ran into Colette before we left and she gave Laelia a present filled with goodies to help her not be so bored during her long Philly stay. But the best thing of all was the great candy from Canada.  I ate most of it.

Party at Shriners with cake!

It was so much fun for Laelia to go to each hospital floor and find the pictures of ghosts on the doors that indicated which ones were trick or treat doors. She would wheel in and yell, “Trick or Treat!” It was so cute. They loaded her up with candy. One of the perks of trick or treating in the hospital is that no one expects Laelia to be fully functioning. Also no one asks those questions that make us moms cringe: Can she grab the candy? Do her arms work? Why isn’t she walking? What happened to her? etc. Going to see a bunch of strangers for candy can lead to some interesting conversations, but the hospital staff were great! They even had her reach in to get her own candy and do it several times for practice! They were patient and talked with her and we had a great time! I kinda wish I could do Halloween this way every year and just isolate her from the world. But I’d be too afraid that would lead to becoming a hermit and maybe even homeschooling. Hehe.

And her prince came!

The cute couple out for a walk.

We ended the day watching Charlotte’s Web like this.

Oh and she is doing better with her walker! She falls down a lot though. Check it out!