(To help Laelia and her Mommy get to the AMC Conference, please go here.)

So much has happened in the last few days! For one thing our summer plans are now officially crazytown. :) We decided, after a ton of encouragement, to attend the AMC Conference July 6th-10th! (This comes after announcing that we wouldn’t be going. What can we say, we thought it was a crazy plan. Mostly because IT IS.  But we’re in!) Then ten days after Mommy and Little Girl get back from the conference, a parent swap takes place, and then Daddy and Little Girl are off to Shriners in Philadelphia! (For a check up, x-rays, AFO adjustments and to schedule Laelia’s pin removal surgery for later in the year.) And while they’re in Philly, Mommy (who will have just become an aunt) will be traveling to Northern California to see her family, including her sister and new baby nephew who is due at the end of June!

This July is going to be BUSY! At least we hope so. If it all works out. I hope I hope!

Those involved with getting our family to and from medical treatment always humble me. The Ronald McDonald House in Camden, New Jersey, has us on a waiting list already. Also it looks like we will have flights through Frontier again. (They have given us our last few complimentary flights, and were willing to help again even though their program has changed!) It goes without saying that without these wonderful programs we would be forced to, I don’t know, move to Philadelphia? Hitchhike and live off the streets? Go without care for our child? Get second-rate surgeries from unqualified doctors? Be in an insane amount of debt? Probably. I am beyond grateful.

But back before anything with our Philly trip was worked out, and while I was standing in my kitchen just staring at my appointment letter from Shriners and worrying about the future (as I always do with medical trips), I can guarentee you that the LAST thing I thought would work out would be TWO arthrogryposis-related trips in twenty days! But then our wonderful friend, Kiersten, asked me to reconsider going to the AMC Conference, and offered to let us share (aka bum) her hotel room and rental car! (Despite the fact that last time she shared her hotel room with us, during the Arthrogryposis Clinic in Seattle, Laelia kept everyone up all night! I definitely won’t remind Kiersten of that. ) It was such a gracious offer that it sent Charley and I back to serious talks concerning the conference, and finally to a decision to go. And after that decision leaked on Facebook (that was all me ), we were blessed by so many people writing us and telling us how excited they are that we’re coming! I love the people in our lives!

Then several people going to the same conference told us about their success with Gofundme, which is a website where people can support trips to medical conferences, and just about anything else. So after more discussion, we decided to set that up. (See shameful begging for $$ above.)

Oh and the conference is not just a meet-and-greet, but a life-changing experience. There are break out sessions that cover everything from home modification to hippotherapy. (I’m hoping to get at least ten new ideas for physical therapy alone!) There are speakers who have already sent me their books or blogs, and other coordinators or board members of AMCSI who have already encouraged us so much that I can’t wait to meet them in person! Plus of course our doctor from Philadephia and other wonderful medical professionals will be there donating their time! So much all in one place!

AMC families are an isolated group. Arthrogryposis is such a rare thing that we are scattered all over the place. All previous AMC conferences have been in Florida, Pennselvania, Ohio, Texas and Chicago, so it doesn’t look likely that one will magically pop up in San Diego any time soon. And I’ve wanted to go to one of these amazing conferences from the time Laelia was born, but we just couldn’t work it out. So I’m super excited! It will be such a relief to meet a group of people who have been there. Who get it. They get the joint contractures and splints and frustrations. They cheer when their kid wipes her nose on the towels, trips his sister in the hall or steals candy off the table. Why? Because it took specialized motor function that doctors told them they may never have to accomplished those bratty behaviors! I want to be in the company of parents who get the fact that ”normal” is flying for surgeries and running over the cat’s tail with a power wheelchair and fighting your school to get them to treat your kid just like the other kids. I can’t wait to be normal with these folks. And I can’t wait for Laelia to meet so many people–kids and adults–just like her!

So thanks for supporting us with your encouragement! I really appreciate it! I feel completely overwhelmed by so much love!

Standing in front of our front door a year and a half after starting this process.

Laelia’s new room. (Before the walls were cleaned and the carpet ripped out.)

Our new housemate. He’s as big as a pen!

The stair. Click on this picture to go see the video.

So we finally found our home! We move in next week, but are starting the major cleaning/fixing projects now. The above picture shows Laelia sitting on the only major stair in the whole place! And if you clicked on the picture and saw the video then you saw that she can easily mount it! Remember when that was a LOT harder? 

What this means for Laelia is huge! National Seating can finally deliver her power chair! And the kind of independence and joy this will bring her will be immeasurable! Laelia has been looking forward to this chair since we first got it months ago. The only obstacle was moving into a single story place since our apartment complex had a several too many stairs. We are planning on building a small ramp on the left side of the stair just for her wheelchair, but that doesn’t stop us from bringing it home.

We have been completely blessed by wonderful friends and strangers alike in the last two days. It became clear by the size of the mess that it would be VERY difficult to finish cleaning and tearing out carpet before we moved in next week. I mentioned this to Brenda, who had a group of ladies over (she is my model for hospitality), and within 24 hours her husband, David the Hurricane of Service (as my husband refers to him), had a group of volunteers over ripping out carpet!  Laelia LOVED having people over and mentioned the names of the people she remembered (Mike and Brenda mostly) again and again. She also went around telling the crew to be quiet. Ah the three-year old princess.

David works at Fellowship of San Diego, a church down the road from our apartment who has left us speechless more than once. They barely knew us before they were bringing meals and visitors after Laelia was born. We have some great friends from there who we adore! Well it happened that a group of people from California Baptist University were in town for the weekend doing service projects through Fellowship. So Saturday morning around ten college students in work clothes came to scrub walls and rip out carpet padding! They were here almost three hours and did more work in that time than Charley and I could have done in the next week! It was amazing!!!

The living room (and stair) after demo.

Laelia “helping.”

Laelia LOVED having the team over. She sang them songs and showed off her new standing ability. She also followed a couple girls, Ashley and Raquel, around very closely just watching them work. (Once again like the little princess she is.) She drove around in her little pink caster cart that my dad had made for her (the wheelchair substitute for shorter distances) going back and forth to all the rooms to see what was going on. I think she was super bummed that they weren’t all moving in with us.

Our hearts are so full of thanks I can’t even describe it! And we appreciate those who have gone out of their way to help us. Thank you so so so much!

It goes without saying that we saved not only time but also money because of the abundant generosity of these friends and strangers. We decided to give back a bit so we donated some of that saved money to a little boy with Laelia’s condition facing some bad circumstances in an orphanage in his home country.

Click on the link to donate to baby Joel!

We also donated some of the saved money to Reece’s Rainbow, a wonderful organization helping people adopt special needs kids from countries where orphaned special needs children go to mental institutions where life is awful. (And “awful” is too mild a word.) Laelia, had she been born there, would be a year away from facing the mental institution, despite her intelligence and beauty. Baby Joel is around four months old and it takes around seven months to adopt from his home country in the Ukraine. If adopted soon he would be around a year old and still very viable for serial casting, surgery and splinting, as well as English learning! I love his little face, it haunts me, and I hope he finds a family soon. Donating to his personal account helps a great deal in that it catches the eyes of potential parents.  Laelia has three friends with arthrogryposis who have been adopted through Reece’s Rainbow. It’s a great program! (You all know you want a mini Laelia. He’s so cute!)

And if any AMC families need to come to San Diego for Rady Children’s Hosptial or any of the many services available down here, we’d love to have you over! Please let us know! Right now we even have one working, yet gross bathroom! (Oooooh tempting.) We love meeting new AMC families and Laelia loves it too! Or if you’re thinking of adopting a kid with arthrogryposis, come meet our Laelia!

Again, thanks to all who helped us and continue to help us. Thanks for the borrowed tools and cleaning supplies and painters. Thanks for cleaning walls and ripping out the little boards with nails in them. Thanks for helping us remove all the doors. Thanks for the prayers and words of encouragement. We feel so loved!

Laelia finally gets to meet Mickey! Her summary, “He doesn’t talk much.”

We went to Disneyland last weekend with Laelia’s grandparents on Charley’s side. See, I do let her have a little fun between physical therapy and her exercises! Sometimes I even let her play video games.

Laelia really doesn’t get Dr. Mario. 

Mama: ”No, honey, the blue pieces go on the blue guys! No the blue ones! Just wait for a blue one.” Laelia: “I made the pill go BONK!”  I think we were playing two different games.

Laelia is really good at technology! Are kids nowadays just born knowing this stuff? I couldn’t get my VCR to work half the time when I was a kid, and it only had six buttons! The other day I went upstairs for a minute and when I came back down Laelia had gotten the iPod Touch (the one we won in the raffle) off the coffee table, turned it on, slid the slide bar to unlock it, scrolled over two screens, clicked on the Angry Birds game, selected the last level of the first chapter and then beat it! She was happily watching the credits when I walked downstairs. What?!!! She’s three!

Anyways, where was I? Oh yes, lots of good things have happened to our family lately! (I knew I started to blog for a reason.) I had meant to write something earlier, but life has been crazy lately! I’ll just start off with the good news: We’re moving!!! We’re finally moving! Our new place will be four minutes up the freeway from where we are now. And we can finally take Laelia’s wheelchair out of storage and bring it home! I’m so super excited I don’t even know what to say! My dad and Christina (aka Grandma and Grandpa) are moving in with us for a couple weeks to repair the place and maybe add a ramp since there’s one stair that goes from the kitchen to the living room. Also the roof needs work, the pluming needs a lot of work including the major water damage it caused, the carpets are covered in dog urine and there are spiders everywhere. But besides the cracks and flaws, it’s home sweet home and we’re over the moon! (But this is the last time I’ll ever move into a fixer. It’s a lot of work!) We hope to move in sometime in the beginning of April and have it mostly fixed by the end of April.

CCS finally started up! We had our first appointment almost two months after we started the paperwork! We now drive over there twice a week, Mondays and Fridays, for PT. An OT eval through CCS is also scheduled for March 16th, and who knows when that will start up. I can’t believe how long this process is! Laelia is no longer even ”post op” since her surgery was four months ago! And now she needs to catch up on all this PT and OT that post op kids should get right after surgery! Ugh. Bad system. Bad! Of course the therapists don’t have any control over the process or timing and then they get kids that needed them months ago–it’s just hard on everyone. But so far it’s going well and Laelia is working hard.

Also Laelia has been seeing a chiropractor to wake up some proprioceptors twice a week, but we just had her last appointment. At least for the time being. We were making gains, but it’s costly and we’re going to see how she does without it for a while. But I have to say Laelia’s lower lumbar has shown improvement and I continue to do the two exercises I learned from the chiropractor on Laelia everyday.

Can you spot the feet in this picture?

I’ve been praying a lot about Laelia’s poor little feet lately. I won’t go into the AFO drama, but she’s had sores and infections and pain and redness and… issues.  And we have tried everything. (So exasperated.) The doctors recommended recasting her until new AFOs can be made. At the word “casting,” a little girl begins to cry… and sometimes Laelia cries too. Mama hates casts! And I’d hate to go back into them and wreck our new PT schedule. *cry* I’m hoping maybe we can just cast the left one since the right foot seems to respond to my torture sessions better. (I am still stretching both of her feet three times a day.)  We go in to see a new orthopedic doctor on March 18th to see what he thinks, and see if he’ll cast her.

(UPDATE: I just got back from Johnson Orthopedic this afternoon. They added some temporary padding to Laelia’s AFOs, and they made molds for new ones! They think they could be ready in two to three weeks! If so, it’s almost not worth it to cast her up, especially if we have to wait until March 18th to even start the process. So I’m thinking that we may not have to cast her, but I don’t know for sure. I’m keeping my fingers crossed and hoping the shoes are made quickly!)

I know there’s more good things that have happened resently, but I’m having trouble thinking of them in the few minutes I have to blog. Oh, well, here’s one: I love Laelia’s doctor! Can I just say that? Love him! I know people think that I’m crazy to travel 3,000 miles to see him, and I especially feel the distance when we deal with these AFO issues, but I just love him! He emailed me the other day (as he often does to check on Laelia)  just because he and his wife were watching Laelia’s You Tube videos at home and he can’t wait to see her walking! He definitely missed that class in medical school where doctors learn to be uncaring, hope-sucking egomaniacs. Plenty of our other doctors took good notes in that class, believe me.

Well I took my blog break and now it’s time for Laelia’s push ups. There’s a video of a dog on You Tube doing push ups that we watch while Laelia, who also pretends to be a doggie, does her push ups. I also found a video on You Tube of a Sea World walrus doing sit ups, so we’ll do those next along with him. Then she’ll be a butterfly to work out her arms and legs, then a giraffe who has to reach her long neck (standing up) to eat “leaves” (potatoe chips) off the tall tree (my hand). Then she’ll be an elephant in a circus and have to lift up her leg while balancing on her other three legs, then she’ll be a kitten learning to crawl, then she’s an earth worm for her back exercises, and then, hopefully, she’ll be a little girl again just in time for daddy to come home. Wish us luck!

Kisses and secrets!

Can I have some?

Pictures of the going away lunch for Adam and Chelsea as they head to Tanzania in twelve days.

We’ve been super busy lately. I had a frustrating experience today with Children’s Hospital and their scheduler. Charley and I both. Ugh. They may call back tomorrow. So moving on.

Today I called CCS to ask how things were going. I think my contact forgot that she was suppose to call me, because she sounded surprised to hear from me. Evidentally she had forwarded our packet to San Diego South’s Medical Therapy Unit. So I got their number and left a message on their weird answering machine that didn’t have a greeting. Feeling weird about that, I called back later and got someone who asked if I was getting services for a tramatic event. (Oh those poor babies!) I told her that Lali had been diagnosed at birth. She was surprised that we hadn’t done orientation yet so she said they would call me back tomorrow and set up an orientation. Then she mentioned that if it was more urgent (like a tramatic event) they’d also try to work out an evaluation. I quickly mentioned we had had surgery and gotten casts off on January 7th and she said, “Oh! She had surgery? When?! Well we need to move faster! Let’s do the eval the same day.” Finally! I’m just relieved to be moving forward with an actual person who knows our situation!

I seriously don’t know how shy parents get these services. I feel like I’ve had to hassle every single person in this organization so far. I mean, I’m a nice bully.  I’m sure they didn’t set up this system to make parents in hard situations have to go through this much hassle to help their children.

Today we also went to Laelia’s second ever chiropractor appointment. It’s so wonderful. She loves it so much! She tells the doctor when something feels good, and it all feels good. I set her on the table and she immediately laid down on her tummy, put her head down and took a deep breath. So cute! Plus the doctor tells me she is the smartest, most well-behaved kid he’s ever seen. Love it!

Today I also contacted Laelia’s pediatrician’s office to get a referral to Johnson Orthopedic. It’s slow going, but eventually we may get this AFO fixed. I followed up with CPMG after we’d gotten home today and they were closed. Grrrr. I really hope between my work schedule, Laelia’s school schedule, doing a CCS orientation and evaluation and working this out with insurance that we can fit in an orthopedic trip tomorrow. I think it’s wishful thinking. Wednesday we have a PT coming to our home who is paid out of pocket (as opposed to going through insurance) so we don’t cheat CCS. I’m hoping she’ll give us a few more ideas that we can do at home! I’m thrilled that she’s coming to us! Thursday we have an occupational therapy appointment with the best hand therapist in the world, Jill Peck-Murray, to get Laelia’s splints adjusted. Friday we have another chiropractor appointment and also my dad and Christina are coming to visit! Then after a weekend of fun with them, we’re all going to Disneyland on Monday!

I really need to clean. No time.

Tonight Laelia’s stretches were easier. Maybe it’s the fact that I do them every hour or so instead of once a day now. Laelia was even able to count down the 30 seconds out loud with me instead of just screaming the whole time. It’s just very nice. 

We also have the dorsilflection straps on her left AFO up to the line! That means it’s on correctly! Twenty-four days after we got them and I have one stupid shoe on correctly. Hurrah! :)

Okay the correct AFO lasted exactly 19 minutes. She just screamed her head off and it’s far enough past her bedtime that I loosened it. Still, we’re getting there.

My throat is still sore and my back hurts, but I’m doing much better physically. My vertigo episodes are down to maybe two a day and that’s it. Also Laelia’s sore (crater) looks better I think. It doesn’t bleed as much so I think that means it’s closing up.

Our new rule about only watching cartoons while actively weight bearing is working beautifully. I’m thrilled with this. Laelia will even tell me, “Mama you need to pause Blues Clues. I need a break.” But while waiting for the chiropractor there was a television playing and Laelia had to point that out while grinning like she was cheating the system.

So things are better. Now I need some sleep.

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

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

Laelia’s legs, a history:

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

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

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

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

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

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

The trip back to Philly was exhausting.

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

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

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

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

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

Before cast removal.

After cast removal.

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

Her legs go together!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!

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

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

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

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

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

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

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

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

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

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

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

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.

Here is part one of the two part summary of our daughter’s major surgery in Philadelphia at Shriner’s Hospital for Children. I decided to be thorough on certain details of this trip since I know of a few people going in for the same (or a similar) surgery, and I wish I had known a bit more of the overall process. So since I don’t have the time to sit down and pour my heart out in one blog post, and my kid is finally sleeping, here is part one.

Night before surgery.

Watching Daddy play Mario. (This is how she likes to stand, wedged between the coffee table and couch.)

Laelia rubbing my back while playing peek-a-boo.

We cuddled and stayed up late the night before our trip for those extra hours of family time. We also took that time to once again talk about where we were going and what we were doing. Yet despite that, Laelia happily announced that we were going to Disneyland while she helped me put her clothes in the suitcase. When I corrected her and talked about surgery, she corrected me and says, “Daddy told me.” Well Daddy got in trouble. Then Daddy spent the rest of the time explaining that we weren’t going to Disneyland until much, much later. “Tomorrow?” Laelia asked. *sigh*

Laelia was a good little girl. She hand-picked one stuffed animal to come with us, her doggie, then comforted her doggie on its upcoming surgery. “There there, doggie. It be okay.” She was a good flyer. During the entire day of flying she only had one melt down. When we got on our second flight after a snow-covered Denver connection, she haggled with us, “Last plane today, okay?” Since it was, we agreed to her demands and the melt down ended. We also found out on our lay over that Ronald McDonald house near Shriners would take us for the night, and possibly for the week.

Then Mama had her own melt down after arriving in Philly when we realized we had missed several calls from the hospital. They were all informing us that our surgery time had changed from 6:30 to 10:00 am. Since I had been told 6:30 am, and that had been the plan for months, and I’m not good with last second changes, and it was a different story than I’d heard from the surgeon’s scheduling person, and and and… let’s just say I wasn’t sure it was correct. And of course even though the PACU was suppose to close at 5:30, it was 5:12 and no one was there. I started to cry, standing there in the middle of the airport, calling people at Shriners. I reached a lone admissions desk person who, after apologizing for laughing when she realized I was freaking out, convinced me not to show up at 6:30 just to wait for hours with a hungry toddler. She wasn’t sure on the time, but she was sure the PACU people would have told me the correct time. But I just didn’t want to risk all the time and effort and set up it takes to fly across the country with your daughter then miss a major, important surgery just because I wasn’t willing to wait a few extra hours in a waiting room. I didn’t know what to do.

Thankfully we arrived at Ronald McDonald house on Erie street to a welcoming, calming environment. Instead of doing orientation they suggested we eat dinner first. In the dinning room a soccer team of girls put on a puppet show and dressed up my daughter and another adorable girl, Sabina, like princesses and sang songs. Sabina’s dad, Michael, started talking to us about what our daughters would be doing tomorrow. It turned out he had an early appointment, 6:30 am, with Dr. Van Bosse, our doctor! Well since Dr. vB can’t be at two places at once, I was finally at peace that our appointment was indeed at 10:00 and we’d all get to sleep in. He was at the right place at the right time to calm all my fears.

I guess I should explain a bit about the Ronald McDonald house. They don’t take reservations, so the only stressful thing about them is not getting to know where you’ll be staying until the day of your trip. That said, Ronald McDonald house is like Grandma’s: there is plenty of food, lots of toys, friendly people and you can go through the cupboards and pantries like you own the place. And you’re expected to clean up after yourself before you leave! It’s also a place to can be alone, or you can meet other people in your situation. It is your home away from home, and a lifeline to a lot of families who can’t be with their hospitalized children without paying through the nose for a hotel otherwise.

We had a large room with two beds. But Laelia, in usual Laelia fashion, was being a big turkey and refusing to sleep. So we locked her in the closet! Haha, I’m not kidding! We put a blanket bed in there and when she immediately sat up and worked the door open, we put her back and closed the door on her!  So she had a tiny little bedroom, Harry Potter style! I felt bad about it so as soon as she quieted down (about ten minutes) I opened the door. Then Charley took this picture of her sound asleep. So cute!  That dirty bottom was from scooting around in the airport on those dirty floors. I’m thankful she started the hard day ahead well rested. She woke up cheerful and full of life. I started the long day ahead with dread.

It’s a funny thing. I would think I was handling everything fine and then I would throw up with nothing to blame it on except stress and worry. This happened twice–once Thursday night and again Sunday night–and both times I was surprised by it. Since I mostly felt very peaceful, I mean for the circumstances. In fact, I’ve felt more peace about this surgery than any of the other three, even though this will be the most major. Besides being terrible at internally handling these situations, I do handle them well outwardly. Then I throw up apparently. I truly believe I did better this time because of the number of people praying for us. Sure I was stressed and worried, but I didn’t have to deal with the depression or morbid thoughts that I have before. I felt lots of peace flowing my way. And it was something outside myself. The other several differences between this surgery and the former ones were that I was more prepared for this one, I had more say, I had more questions answered by the doctor (who I have a crush on) and I had more hope. And, people were sending us their love, positive thoughts and praying lots and lots of prayers to God on our daughter’s behalf.

One stresser was transportation. The rental car companies at the airport wanted to charge us $500 for those days we would be in Philly, for their smallest cars! Our budget was $200 total. We tried to do the whole thing with cabs, but we had to go between the hospital and RMD house too often. Then while looking up prices online I stumbled across something a whole lot cheaper, but I had accidentally found something in Philly but outside the airport. But that place closed too early and we’d miss it. So Charley found another place and flat rates for cabs online to get there. So we ended up taking a cab to another rental place, then the rental car to Ronald McDonald house. It was a round-about way to do things, but budget friendly! I suggest it for anyone needing to have a substancial stay in Philly. We used Enterprise in Downtown. (Tell the cab driver their address–36th S 19th Street–or it’s hard to find.) Cab there from airport: $26. 

Our hospital is surrounded by the ghetto. I’ve said this before, but I was hyper aware of it having to make a lot of late-night drives through it. Plus having to deal with the non-stop sirens at night or crazy drivers/pedestrians during the day… bleh. At least this time with Charley with us, we transversed those terrible, confusing signs and streets that make up north Philly, and actually found the Shriners entrance/parking lot this time around!

Shriners’ Hospital’s Waiting Room Vrrrrrroooooooom!

We arrived at Philadelphia at 10:00 am and were still waiting for surgery at 12:45 pm. So glad we didn’t show up at 6:00 am! Every time a person came to check Laelia’s measurements, blood pressure, temperature or simply to take out the trash in the room, Laelia freaked out. She was scared. The people at Shriners are nicer than any other hospital we’ve dealt with. They care. Period. That’s the difference most of the parents I’ve talked with notice first. These people know how to distract a child, talk to them and work quickly through their screams of protest. But despite this skill, Lali was still pretty freaked. When we walked into the PACU and saw the nurse, the first thing Laelia did was cry and shake her head, “No no no no no!” The nurse put a hand on her and said, “I have a very important job for you to do, okay? Are you ready?” Laelia nodded quietly. Then the nurse showed her a wall of bears and asked her to pick out her special surgery friend. Laelia started to relax a little.

Finally they gave her something that left her inebriated. She went from completely rigid to totally relaxed. She kept sliding off my lap even! Then my drunken baby girl began to sing silly songs while slurring her words, and with that reddish hair it really brought out the Irish in her. When the man in scrubs came to pick her up and carry her into surgery, instead of freaking out, Laelia went complacently with him. I watched them walk down the hall as her head swung limply, like a sack of potatoes, in time with his steps.

And she was gone.

My arms, that she’d been in since we walked into this scary place, were unnaturally empty. I was clutching her blanket really hard to remedy that empty feeling. When we stepped into the elevator to head back to our room I caught a glimpse of myself on the elevator’s reflective metal wall and I looked like some melodramatic lifetime movie reject. I made a conscious effort to relax my body and facial features to look, what Charley refers to as, ”not crazy.”  We went to the cafeteria first off and forced down some fried food that sat in our stomachs like rocks all day. Bad move. A nurse came in while we ate to let us know they got the epidural and IV in (a potential issue with arthrogryposis patients). We thanked her for the news, but it became harder to swallow after that. We called family, watched Man Men, hung out with Sabina and her daddy for a bit and paced. Well I paced, while Charley kept trying to grab me as my course sent me within a foot of him.

I called the PACU around 2:40 pm. They had just finished with her first leg and were just about to break her second leg. Waiting after that became harder. I paced some more. The last half hour was the worst. My stomach hurt, I felt sick and every minute felt like it had been too long and something had to have gone wrong. I was on the seventh floor in the waiting room that had large windows looking out over the ghetto. I’m afraid of heights and was going slightly mad. My mind played this trick where I could imagine myself falling as the floor melted away, and then for a second every so often it felt like it was actually happening. I started to think about worst case scenarios. Just as I started to get really morbid and my stomach lurched,  just under five hours after handing my child to a stranger, the doctor we’d traveled across the country to see walked into the room.

The surgey was done and we could see her in about 20 minutes. The sites looked good, but her right leg gave him a bit of trouble. She wasn’t as straight as we’d hoped, but this was definitely a great first step towards standing up straight. But because of her epidural, her recovery would be in the ICU until Thursday. And hopefully we weren’t too set on flying back Friday.

My skin was crawling because I wanted to see her so badly. A woman led us to Lali’s room at a pace much too slow for me. Laelia started crying once she saw us. I looked at her little face, so sad and angry and drugged, and my mommy instincts kicked in with all the comforting I had within me. I blotted at her sweaty face and told her it was all over. She always looks so little after surgery, so tiny. She was hooked up to so many different machines. Her breathing was labored and she sounded really congested because of the liquid in her lungs. She didn’t talk or smile–so unlike her. Then I looked behind me to see my husband, my rock, completely lose it–big tears falling down his cheeks. He excused himself from the room and sobbed.

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

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

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

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

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

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

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

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

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

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

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

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

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

Ha. Ha.

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

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

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

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

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

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

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

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

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

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

“Megan and Joshua and school!”

“Um, just school honey.”

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

*sigh* “Yes, school.”

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

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

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

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