Laelia Sky

It reads: “Hi! My name is Laelia! ‘LAY-Lee-Uh’ I have a disability called arthrogryposis. It means my joints are stuck. I also don’t have the muscle to walk or lift my arms. But I’m smart! So please include me in conversations!”

Having Laelia hand these to people has been so great!  It provides an instant explanation of her disabilities without me having to explain to yet another person about arthrogryposis, but it also opens up an instant, informed dialog. It has helped people who have never dealt with disabilities avoid saying things like, “What happened to your daughter?” or “Why can’t the little girl lift her arms?” that us moms HATE responding to constantly. (The zoo and grocery store hold the biggest offenders!) It also clearly states that I want my daughter included in conversations. A lot of people ask me “harmless” things in front of Laelia about Laelia. But not after they read the card!

Another mom (the one who started the AMC support group) told me that business cards would smooth over first time meetings with people. I thought it was a cute idea, but I never thought I’d go through so many of these things! I had 250 cards made for free online (cost me $5.99 for shipping) and already I have handed them to strangers, gym childcare staff, people who work within special needs communities but have never heard of arthrogryposis, and in November I’m handing them to airline employees! 

Actually the business card suggestion was made after I shared our not-so-great experience with a flight attendant during our first trip to Shriners to get Laelia evaluated for surgery. This head flight attendant with Continental, Cindy, demanded that my daughter stand instead of sit while waiting for the bathroom at the rear of the plane. At first I geared up for a teaching moment (which happens way more often than I would like in the real world), but she got so mean so quickly (telling me that allowing my daughter to sit on the dirty floor was awful, and otherwise demeaning my parenting) that I was choked up with tears before I could blurt out the painful truth of our situation. I tried to tell her that this was how Lali “stands” because she’s different, but before I got the full sentence out I was shot a look that was incredulous and outright mocking, then I was bluntly ordered to pick up my child NOW. And that was when Laelia began to cry. I overheard that awful woman talking about us as we were back in our seats (a mere few rows from the back, row 34 of 37). Her fellow employee had to explain to her why the little girl didn’t stand.  The woman became even more incredulous and said we should have sat in a different seat then.

When I’m emotional (angry, sad, hurting etc.) I can’t educate. When I can’t educate then hard-headed people can take advantage of us, and hurt my daughter’s feelings.

So this card was made with Cindy in mind. But thankfully it’s been used effectively to avoid Cindy-type situations.

Last week we went to Tim (my cousin) and Nicole’s wedding and had a great time! It was beautiful and so much fun! Plus a wonderful chance to catch up with my family. Below is another blog with pictures from that event. But this post is about something else: our flight home. We had a terrible time on our flight home. Well there was one bright moment–it felt like a scene from a movie when at least 60 people (okay, well, two people and their large groups of students and parents) helped Laelia and I get home! In fact, we wouldn’t have been able to go home if not for those strangers! I was so grateful! I’ll copy and paste parts of a letter I sent to Southwest this morning so you know a tiny bit of what happened:

“We arrived 45 minutes before our flight was to leave. [...] I saw the line to check in was very long so I asked an employee in a Southwest uniform near the front of the line what could be done about my late arrival. [...] She informed me that there was nothing to be done and I would miss my flight and end up on stand-by. I then asked for a wheelchair for my daughter who has arthrogryposis affecting her arms and legs. She pointed across the room to the far side where I then, unassisted, dragged my bag, a car seat, my suitcase and my daughter to put her in the chair.   

When I arrived back at the end of the line behind a large school group, one of the parents of that group had noticed our dilemma. She then took my bag for me and gave me her place in line. Another man in the group asked his kids to let me by. I did not initiate this charity, but appreciated it a lot. Getting permission from people in the line, I was cheered on and escorted to the front.  

The aforementioned Southwest employee then became confrontational and rude. She demanded the ticket of the lady helping me and ordered us to the back of the line. She then said that the 9/11 terrorists had cut in line and that this rule was enforced because of terrorist activity! At the mention of terrorist activity, I felt very ostracized and feared repercussions. Other people in the line behind us started to defend us and tried to explain that we had not cut in line. The Southwest employee became agitated and argumentative with them until a supervisor behind the kiosk spoke to her and graciously offered to take us.”

Yeah it was a bad experience. But the drama continued when we got off the plane. Here’s more from the later part of the letter:

“I asked if a wheelchair would be available upon exiting the plane and she said it would be. So upon our exit from the plane we saw that same type of wheelchair waiting for us and I assumed it was ours. I put our car seat in the chair and while I was strapping my daughter into it, I overheard from behind me a female Southwest employee talking to a male Southwest employee (yet directed at me) to put another passenger into “that” wheelchair (referring to mine). Of the four Southwest employees in that crowded space right outside the plane, no one made eye contact with me or asked me to relinquish the wheelchair, but they all spoke loudly in my direction while pointing at me. This was very unprofessional. One Southwest employee, the man who had been ordered to take my chair, stood uncomfortably close to my daughter’s wheelchair while I was strapping her in. I asked him at that point if they needed this wheelchair for another passenger, and if he could then bring us another one. He replied sarcastically, “You mean a stroller? You need a wheelchair or a stroller?”  

My daughter was clearly in braces and could not move her arms or legs, plus I had her disabled parking placard on hand so I was able to “prove” she was disabled and needed the chair. He didn’t respond to me, but spoke to the female Southwest employee who had ordered the wheelchair be removed from me who then got into a bickering match about canceling the other wheelchair with another female employee who responded with, “You don’t have to talk to me that way.” Then the first female employee stormed off! So I asked the remaining Southwest employees if I could please leave now and was given permission.

My past experiences with Southwest staff have been positive. Employees, on the aircraft anyway, have always been courteous and usually humorous too. I would like assurances that my experience on June 13^th will not reoccur. I feel that Southwest violated the anti-discrimination aspect of the Americans with Disabilities Act by assuming my daughter was not deserving of the equipment she needed. Because of this I would like a copy of your policy on dealing with handicapped passengers. And I want to know in writing what training your personnel receive in handling passengers with special needs. I look forward to your reply. ” 

I then signed my name and hope to hear from them. Yeah I really shouldn’t have to prove my daughter is “disabled enough” to deserve a wheelchair. Sheesh. I felt like a rock star for remaining so nice. Gave myself a little reward too. When I got home I had fudge ice cream for dinner while watching Daria on DVD while crying my eyes out while getting my feet rubbed by my husband. Ah the girl life.

(Since this got long, I went ahead and put all the pertinent information in bold so you less-hardcore Lali fans could skim through this much easier.)

I don’t really know where to begin. We got back last night from our Washington trip with Kiersten and Ryan to Seattle Children’s Hospital. We haven’t seen Ryan since he was itty bitty, so it was really neat to see him and Lali be bad influences on each other. You know those seagulls from Finding Nemo who say, “Mine mine mine!” Well these two do that way better… constantly!

From the very first, they were being little monkeys in the back seat. It’s so neat to see them play little copy cat games together. Usually little kids leave Lali behind with copy cat games since she can’t lift her arms, but Ryan and Lali can do the same things. And they are so goofy! And this is another picture of them playing together throwing blocks off the bed while saying “Hi-ya!”.

And here’s another picture of dinner that first night after long plane rides.

Hehe. Aren’t they precious? Seattle has some GREAT restaurants and I admit it’s been hard to going back to eating like a real person again. And on that happy note, I guess I’ll start with the good stuff.

~

Dr. Hall

We met with Dr. Hall and (drum roll) Laelia clearly has amyoplasia. I even got to brown nose a bit and mentioned all the side effects of amyoplasia that I’d read about in Dr. Hall’s book that Laelia clearly has (her hair whorl and underdeveloped labia). Then she showed me some things I’d missed from Laelia’s newborn pictures (a bone protrusion in her forehead hidden under her bright stork bite, and her face was asymmetrical for a while after birth). So even though getting that diagnosis should be devastating, in our case it was just confirming what we already knew.  The whole exam took around 40 minutes. Dr. Hall studied pictures of Laelia, then looked her over and also got her genetic history–it was funny when I was giving her my family history because she got every family connection, she even corrected me once when I got confused in my notes. She had practically summed up by whole large, crazy family tree using a single sheet of white paper. Hmmm, I think someone should be a geneticist when she grows up.

As far as myself or ANYONE in my gene pool (hello family!) having another kid with this condition, the odds are 10,000 to 1!!! This means that in the future I’m as guaranteed to have a normal, healthy pregnancy as the next normal, healthy person. The odds of me having two kids with this would be like winning the lottery twice with the same numbers. In fact Dr. Hall (who was completely personable) seemed to be encouraging it:”These kids do well with siblings!” “I’ve overseen over 2000 families with amyoplasia have other unaffected kids!” “You are clear to get pregnant.” So okay then. Um, not so fast now. Hey! :)

Then she said seriously, “You need to tell your family that this wasn’t your fault. This has no known cause. You didn’t do anything wrong. And you can tell them that the expert said so.”  So since I said I’d put that out there, there it is. But don’t worry, family, I defended your awesomeness.  I guess lots of her patients have had families or friends who were too embarrassed to ask the mom if she did something. And really I have felt guilty and wondered if something I did caused this. I got to run several things by Dr. Hall that I thought were awful and could have caused it: I didn’t always take my vitamins because I was sick, I never exercised, I had three drinks before I knew I was pregnant although it was on three different days and I was never drunk… oh and I drove over bad, bumpy roads to get home! Surely one of those things caused this? Nope.  All my parts work and should have produced a typical baby girl, but instead I got an extraordinary baby girl.  

A small percentage of amyoplasia cases show evidence of a vascular accident (something that was mentioned the day after Lali was born), but Laelia doesn’t show any evidence of that. (That would be like the tip of a finger being dead.) It can’t be a virus because they’ve seen it in one twin and not the other. The only other thing they think causes it is somehow the anterior horn cells (for muscle) never develop. No reason why. When the researcher, who was sitting quietly in the background, mentioned that they were still trying to figure out what caused this, Dr. Hall said, “And you won’t find it!”  Then they grinned at each other. (A bet maybe?) But there you have it. Totally random!

The only bad thing from Dr. Hall’s visit was that she let me know that Laelia would get arthritis in her 20s. I knew arthritis was in her future, but was not aware it was this early. I know people with arthritis, and I’m sad she’ll have to suffer with it for so long.

~

Children’s Hospital

It’s an amazing place. It’s set up like a giant aquarium. There are fish everywhere and Laelia LOVES fish! And since Kiersten brought Finding Nemo for the kids, Lali could point out all the “Nemos” in the tanks the next day.

I decided to buy Laelia an Elmo balloon after she grabbed a tiny Elmo doll from a low table display in the gift shop and it turned out to be $16.95. (No, it was not made of gold. Nice guess.) So $3 Elmo balloon it was! She carried that thing to all appointments and it was a general bother. Both her and Ryan yelled “Elmo Elmo Elmo!” whenever it was near.

Our experience in this amazing place was really great, but it’s about to get not so great.

~

PT

After a get-together with a few other parents there, I got an escort to our next appointment by a person who turned out to be an OT! And since we had not been able to afford seeing an OT, and I mentioned we didn’t have an appointment with one, she agreed to do a little impromptu visit with Lali right then and there. She mostly just praised the OT I have now and did a little exam. But she was very positive and I appreciated that. Then came time for our meeting with the PT. That wasn’t as positive. Our PT was very nice, but kinda negative. Instead of saying, “Good job Lali!” when she tried to kick using a muscle she didn’t have, the PT instead said, “So she can’t really do that.” And one time she was holding a ball out for Lali and trying to get her to do something with her leg, so of course Lali reaches out for the ball instead of kicking with her leg and the PT seemed frustrated and grabbed the ball away. She also seemed tired. Oh and I brought with me a list of questions to ask her that my PT back home had written out for this very reason, but she only wrote down the questions into her notebook and she never answered any of those questions! Is she going to write out her answers? And when? And who will she send the answers to? She said she needed a consult first. So… Anyway, this is all looking back on things, because she was perfectly nice, but I have one more gripe. At one point she noticed how Lali said, “help please” when she couldn’t do something and I mentioned that she says that a lot when she wants help. She then said that Lali was giving up too easily and that “personality determines ability”. What’s that suppose to mean?!

We did get some good ideas after PT. We’re going to get Lali used to the scary water (aka real baths) to prepare her for some possible pool therapy. We’re also going to get a 30 degree wedge to help her sit up herself. And we’re also going to try to get knee immobilizers. So that’s good.

Kiersten and Ryan had an appointment with the same PT the next day, but instead they got another one last minute. When Kiersten mentioned how Ryan had done well on his knees (and Lali too after hearing about Ryan’s progress), the PT asked where she’d learned to start knee weight bearing. Kiersten mentioned the AMC Atlas (arthrogryposis book that Dr. Hall edited) and that PT said, “Oh I wrote that article!” Kiersten took a video of all this so I could reap the benefit of her PT appointment. I kept thinking, “Why couldn’t we have gotten that PT?!”

~

Dr. Song

Dr. Song is a bone doctor/surgeon. After looking Lali over he was very optimistic and mentioned doing surgery to her knees to release them and internally rotate them and leave the hips externally rotated to help her stand. I was getting hopeful that there was something else to try, and scared that we were looking for a completely new surgery coming up very soon. He also mentioned knee casting to try to straighten them first. I was ready to do something since stretching hasn’t been gaining range of motion in her lower extremities. In my mind if the casting worked and the surgery moved her in the right position so she could stand (since she can’t physically stand now), then maybe with leg braces and a walker she may be able to get around the house and achieve independence! Actually looking back I was getting a lot of hopes up. Dr. Song then decided to take a break from our appointment to confer with the PT that Laelia had just seen.

He went out to talk with her. When he came back his countenance had changed. His optimism seemed more guarded, his words more politically correct. He said she wasn’t a great candidate for this surgery, and to wait six months to a year to see if we should do anything with her. He then brought up that kids with her personality (asking for help, or giving up easily as the PT had mentioned) didn’t do as well as other kids with go-get-’em attitudes. He said that 90% of kids with amyoplasia were ambulatory (able to transfer and stand), but it wasn’t looking like Laelia was going to be one of those kids.

When he left the room I asked the blond who stayed behind, “It’s not just me, right? He did start out very optimistic about all this surgery stuff and then came back from a meeting with a PT we had seen one time and is now pessimistic.” She responded in between niceties, “He wasn’t that optimistic in the beginning.”  Okay that was NOT my impression. She then printed me out a Return to Clinic paper to schedule a follow up (in that six months to a year we’re ignoring her), and I instead used the paper to write out my feelings. I was emotional and in tears, and these feeling are few and far between nowadays, but I have learned that it’s important to work through them. And even though my rational self disregards these feelings now, they were nevertheless honest (if a little disjointed), and I think a lot of parents in my position might feel the same way so I’m sharing them here. So these are my notes scribbled on the back of a paper minutes after leaving my appointment:

“10% of amyoplasia cases aren’t ambulatory at all and Laelia is one of those cases? I’m feeling depressed. I look over and Laelia is happily looking at some fish. If only she knew what he said in there about her future.

Sometimes when she’s bratty I worry that she shouldn’t be because she has to be “pretty on the inside” to make up for this.

I’m having wrong feelings about somehow having more kids to make up for this. I’m having feelings of failure–maybe because I’ve put more energy, patience and work into this one project (raising, caring for Laelia) than anything in my entire life. In fact I get how parents would not feel worth living if their child died. It’s not all about how much you love them–it’s also about how much of your own life you put into them.

I see kids who are worse off than Lali–I think there’s another clinic going on because I’ve seen lots of kids with breathing and feeding tubes–and that makes me feel better. Wow. That’s sick. And I wonder what it is about me that has to compare my child’s (and my own) worth to other people. But this lets me down when I leave the clinic area since out in the real world away from Children’s Hospital most kids are better off than mine. Most. And it’s taken for granted.

This sucks that my faith isn’t stronger. Right now I’d love the reassurance that God has a plan for my daughter and she’ll have a new body one day in Heaven. Something is keeping me from doing that. It feels like false hope.

Her lack of trying… does she get that from me? I didn’t really try at anything long term until I was in college.

I saw the PT’s back as she walked through the hall after my appointment with Dr. Song. And I felt the urge to run after her and ask “Really?” Or ask why. Like my kid was applying for a job and didn’t do well on the interview. I wanted to fix it. “

That’s all I wrote before I started to feel better and didn’t need to journal it anymore. I wiped my tears away and took my daughter on a well-deserved trip around the fish tanks that she’d been begging for. Seattle Children’s even let me borrow a bright yellow taxi car for her to “drive” around while I pushed.

~

Sleep

My Laelia is allergic to sleep sometimes and I didn’t get more than a few hours of sleep that first night.  She cried for a while before going to sleep. Then she woke up in the middle of the night screaming. I tried moving her entire hotel-borrowed crib into the small bathroom at one point just to let other people in the room sleep. It didn’t fit. At one point someone started banging on the wall. It was probably directed at us. Then finally Lali was so wide awake that we both played quiet games in my bed. I tried really hard for those not to be singing games, but she does those best of all so unfortunately she would belt out a tune and I would cringe and see if she’d woken up the other baby. Then she would look AT ME and say, “Shhh Mama. Baby sleeping!” !!! She fell asleep at 5:33 AM. The hotel alarm clock that no one set went off about an hour later. At first since it was playing music I thought it was Kiersten’s cell phone and wondered why she wasn’t turning it off. Then I realized that it was the alarm clock on my side of the bed, and it was too complicated to turn off. Even though I found my glasses in the darkness and hit every button on that thing I didn’t do it right apparently because it went off again nine minutes later! I couldn’t unplug it because the cord was behind the big immovable bed. So I was a bit tired for all our first appointments. Thankfully Kiersten woke us up an hour before our Dr. Hall appointment (because among other things that stupid alarm had the wrong stinkin’ time!) and we only ended up being 15 minutes late after check in.

But the second and third nights were absolutely wonderful.  We had a plan, Lali and I, for her to try to sleep in her crib, but if she woke up in the middle of the night then I would put her in bed with me. So she would go to bed around 10:30 PM and then wake up at 3:30 AM crying. I would grab her and put her in bed with me and instead of playing games she would cuddle up and go right back to sleep! She had not slept with me since she was six months old! If I had known that would work I would have done it in the first place! I used to get her when she’d wake up at night and she NEVER could sleep with me around. I tried not to take it personally. But this time Lali snuggled up under my chin, pushing all that crazy hair in my face, and slept like an angel. I fell in love all over again! She’s so precious when she’s asleep. She even does that high pitched sigh in her sleep like I did when I was younger. Besides being a total bed hog, she’s just a dream! And we got a bit more sleep that way.

~

Dr. Hanel

The next day (Thursday) we had an appointment with Dr. Hanel, the upper extremity doctor. It reminded me of my visit with Dr. Hall–it was a joy! Dr. Hanel took to Lali right away. He checked out her arms and shoulders and then said, “Can I tell you something, Laelia?” She looked in his eyes and nodded her head. And he said, “Don’t you let them ever operate on you pretty girl!” And she said, “Yeah!”  Then he looked at me and told me not to do any surgeries on her upper body. No releases and no muscle transfers; she doesn’t need the release because of her elbow range, and she’s not a good candidate for the transfer. Muscle transfers were one hope of getting her to maybe lift her own arms one day, but after hearing the down sides, I’m almost convinced it’s not worth the gamble. Especially not with her weak muscles, and the fact that we’re borrowing from Peter to pay Paul (in this case her back or peck muscle that she needs). But we’ll do more research and come back to discuss it in five years or so. Then Dr. Hanel gave me advice on parenting and teaching Lali words because she was going to be the smartest and prettiest baby in the world. Yep, this was much better than some of my other appointments.

~

Fun

We went to the Space Needle Thursday night for dinner. Lali passed me her french fries by putting them on my plate and then I’d share my pasta and we’d wink at each other. The view was amazing! And I think the waitress would have taken Ryan home with her. It was a fun trip. The next day we went to the Children’s Museum for ages 0-3 and played until it was time to fly home. It was a great trip and I had lots of fun with Kiersten (aka “Gigi”) and Ryan. I have some great memories of little kids chasing each other around, great food (sometimes too spicy for wimpy me) and one very funny run-in with Kiersten at 3:00 AM.

Oh and we ended our trip just like we started it: being harassed by the TSA over Laelia’s orthotics. We got a sticker out of it. It says, “I was detained for questioning by the TSA for looking suspicious!” No, it doesn’t say that. I asked. They don’t have a sticker like that. But, no, really they were very nice to the baby girl because she demands it with her sweet nature. She held out her shoes for them to wipe. They also needed her to turn her palms up, and after I explained that she couldn’t do that (she’s missing the muscles) she announced cheerfully, “I do it!” and held her hands up as far as they’d go which worked just as well to wipe the undersides. Nothing this little girl can’t do! 

Honorary TSA

And a special thanks to my husband who posted my April Fools joke while we were away. Love you!

I don’t know whether or not to post this under the category of “angry” or “humor,” since it’s so infuriatingly silly it could be either.

(And I’m not quoting anyone word for word, but here’s the story recap.)

I needed Laelia’s PT, OT, Biopsy, Surgery, Newborn, Orthopedic and all her other records to go to Seattle Children’s Hospital for the Arthrogryposis Clinic.  No problem.  So I requested them on January 26th.

25 cents a page?! Fine.

Wait. Wait. Wait. Nothing.

I call my contact at Seattle Children’s. “When are your records coming?” She asks innocently. “I have to get these to the doctors ASAP!”

Blarg.

Our pediatrician is awesome, so one quick call to his office and Lety is rushing out the records that day. Yay!  The hospital records, on the other hand, were a whole other story.

Last month I called Rady Children’s Hospital’s customer service and got all the information (or so I thought) on requesting forms. They sent me to their website where I printed out the correct form, took it to Children’s Hospital personally, watched the lady scan it into their system, called to make sure it was being processed, and then forgot about it entirely, thinking it was being handled.  Nope.  Had my husband call them. They start out, “We didn’t get your form.”

“But it was scanned into the system last month.”
“There’s no record of that. You need to fill out the form and wait five to seven business days.”

So my smart husband waits through a ridiculous phone tree in order to call the lady who originally scanned it into the system (because we knew her name), and she verifies that it’s in there. He calls the Historical Records people back.

“Spoke to Maria and she sees our request in the system on this day.”
“Hold please.” (A looooooooooong time later, like over twenty minutes of total phone time.) “Okay we have it. But we can’t fax records this long.”
“Were you going to call us and let us know that?”
“We didn’t receive your records.”
“You obviously did.”

Oh no, nah ah. Tag. Mama Bear’s turn.

“Listen what is your normal processing time for a request for records?”
“Five to seven days.”
“So when something is sent to you on January 26th, and, say, it doesn’t take five to seven days, what happens then?”
“Um…”
“And even though it says NOWHERE on your website or on the form that records this big can’t get faxed, how or when do you let us know that?”
“Um… you’ll have to talk to Lisa.”
“Oh I didn’t realize I was speaking to someone who couldn’t help me.”
My foot: tap tap tap tap tap…
Lisa: “Well I can’t do anything until you fill out this whole other form anyway.”

!!!

She faxes form. I fill it out and fax it back. I hear nothing. I call back.

“I’m off work in an hour, I’ll come pick them up personally.”
“Oh no, you have to wait five to seven business days.”
“Oh, I already have. Now I want them in my hand.”
“Um, let me ask the lady who prints them out…”

(So if you didn’t catch that, the person I was speaking to before AND the person I’m speaking to now can’t help me.)

“Who? What’s her name?”
“The gal who does the printing? Oh she’s the (long title) person.” (Who apparently doesn’t own a name, poor child.)  “Oh and she says we can’t do a print job the same day of the request… so…”
“So…?”
“Um, we just can’t.”

Fine. So I got them the next day. Oh and that’s a fun story too. Had Lali with me, straight out of PT, and only when I showed up did I realize that the Historical Records people occupied one room in the surgery recovery building. We walked right past both of Laelia’s post-op rooms from previous overnight visits. Lali starts to squirm and cry in my arms saying, “No no no no…” I see the panic in her eyes and realize she associates this place with surgery.  I promise in a soothing voice over and over, “No surgery. Just a quick trip. No surgery, I promise.” We finally get to the door to pick up the records, and I have to request they be put in a big envelope or package and not just in a loose stack. Oh and are they heavy! Want a workout? Try juggling a two-year old, a diaper bag and a stack of arthrogryposis medical records!

After a semi-polite receptionist (who I swear rolled her eyes at me when I tried to explain why my daughter was upset), an hour in traffic and one quick breather later, I was flipping through the records and discovered 15 of my official records were blank pages, and about 20 other pages just had one or two lines on them–all of which I got charged 25 cents for! Grrrrr…

Long story short: We have achieved record-dom! (Yay!) …and only at the cost of my sanity and patience.

One sick baby puking up everything.

So her parents give her lots of love and care…

…and now we’re all sick.

Lali woke up from her Wednesday afternoon nap surrounded in puke. I put her in the bath where she puked three more times. By the time Charley got home she had puked 24 times. Around 11:00 PM I started feeling sick. By 2:00 AM I had puked 34 times. (Why I kept count I have no idea. I kept thinking a doctor would want to know this stuff.) The next afternoon Charley was puking… like twice. Punk. This thing hit fast and hard. We couldn’t even keep down water so we all lost weight. (Which was only a good thing for one of us: Mama!)

As of Friday night Lali is doing much better. She kept down two bites of banana, half a piece of toast and a bit of yogurt. Charley is eating again (his stomach stuff didn’t last as long, he even ate some nachos), and I am doing much better, but I’m still really nauseated and can’t really eat or stand up for very long.

This has not been fun. Wednesday night after Lali went to bed before I was even feeling the slightest bit sick I started a blog on how Charley and I were feeling this weird sense of normalcy at dealing with a sickness that you can easily Google and get parental advice on. There’s not a lot of parents who can instantly come up with comforting tips for post-surgery recovery, but lots of my friends and family had great stomach flu advice. And it worked really well!

So we were thinking about how normal it all felt. And how it was almost comforting to feel like we were dealing with “normal” parenting stuff. Then karma decided that we weren’t empathetic enough apparently! :-/

And if I may vent a little: STUPID ARTHROGRYPOSIS!!! Because of Lali’s arthrogryposis and the fact that she was really too sick to do stretches the last few days, she can no longer reach her mouth when eating things! She’s really stiff! It’s really not fair! She was on her back and I handed her a cracker and as best she could she couldn’t get it in her mouth without me hovering over her and pushing her arm down. (Because of the contractures in her elbows.) Stupid joint contractures!!! Hate them hate them hate them! So way to go AMC, for making this one “normal” experience instantly “special.” Boo!

But all in all we’re all doing much better. No more grabbing our stomachs and wanting to die. And Charley’s comments on my messy hair are becoming more bearable. (I had some puke in my hair for over 24 hours and didn’t notice.)

Oh and Lali learned to play Mario Brothers on the DS during this whole thing. It’s really cute. And she can say, “Baby sick,” which is heart-breaking.

We are so lucky/blessed/ecstatic that Lali is such a good little girl. She didn’t scream through this whole sickness even though it was miserable for her. She was very patient with two sick parents caring for her. She only fussed when absolutely necessary, and only cried before puking. If she had screamed or thrown fits this whole time, it just would have been so much worse. She really is the greatest little thing. Thank you, Lord God, for my great baby girl!

I’m so sick of the stupid cast emergencies! Blarg!!!!

So apparently when I took the picture of Laelia’s left foot with the pin in it last post, it showed that the pin was sticking up. But Laelia had just pulled a bunch of gauze out of that side and I thought that’s why it was looking more pronounced.

Yesterday when Chelsea showed up to watch Lali, she noticed it too and showed Charley. So then Charley called me up at work, but I was in a meeting. By the time I got to my messages there was an ever increasing panic in each one:

“Hey honey, Laelia’s pin is sticking up a little and she cries when I touch it. I’ll keep you posted.”
“Hey honey, Laelia’s pin really doesn’t look good and the top is running parallel with her toes instead of up and down. That’s not good… call me!”
“Hey honey, the hospital isn’t returning my phone calls so I’m going to the hospital.”

So yesterday Laelia was back at Children’s Hospital having a doctor screw her pin back down into her foot, into her bone. He pushed it down and rotated it the correct way. I got ahold of Charley during the procedure and heard the screaming. It was only ten seconds of pain, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, but it seemed longer, and I couldn’t hold her.

Charley missed most of an important work meeting after spending the morning at Children’s Hospital. He got home late from work and arrived just as Laelia was being put to bed. We talked for hours about our life after that. It’s not been easy.

Laelia was such a good girl yesterday despite it all. We met with Early Start and Regional Center who did her two year report. We updated her IFSP (Individualized Family Service Plan). She’s doing well and excelling even though her gross motor age is six months. They grade her by age. Her fine motor is now 12-15 months because she turns pages of a book and picks up small things like Cheerios. Her social-emotional skills and cognitive abilities are 18-24 months (normal!). She’s definitely smart! Her language skills are getting better too! She’s now at 16-21 months with receptive and expressive language. Last time she was six months behind, now it’s more like 4-5 months behind if you look at the numbers liberally (that she’s closer to the 21 months than the 16 months). I really think going to school is helping. I just hope all these medical emergencies stop interfering with school!

Her goals for the next year will be to sit up by herself (which unfortunately was a goal from last year; we’re so close!), feed herself with a fork and spoon, and, if she is able, standing may happen this next year. If she doesn’t have the hardware (muscle, etc) then we’ll instead work on her moving under her own power with a vehicle of some sort. Like her car!

But of course she’s having trouble driving her car because of the casts. I hate casts.

It’s official. We’re losing our respite services because of “severe and painful” (according to a letter we received) budget cuts in California. So far from what we know (and all information is terribly communicated) we still qualify to send Laelia to school. So that’s good. We have a pretty good network of friends now so this is not heartbreaking news, however there are many families with disabled kids who no longer have this support. Not that we won’t miss it terribly, but I’m not worried about us. California has made some bad financial decisions and needs to fix the problems somehow. We were thankful for the time we got respite services; it meant so much to us.

Today I got home and walked into a clean house. My living room was picked up, all my stuff was organized and stacked, my kitchen was clean and Laelia was bathed from the waste up! Chelsea is my favorite friend/godmother/respite person ever!

If it weren’t for a letter Chelsea had received letting her know when Laelia’s respite services were over, we would never have known! Even though the Regional Center sent over a letter via courier service that I had to sign for, it was still unclear. We read it through and couldn’t figure out if the cuts applied to us! And we aren’t dummies! They really needed to make that more clear.

Frustrating.

Laelia did better at skipping breakfast and lunch than I thought she would. She just kept looking at us like we forgot something. Then when we packed up her stuff to leave, she really was barking at us. We were pretty good at distracting her during the two hour wait before surgery. We had to meet with the anaesthesiologist, surgeon’s fellow and head nurse. Then we changed her into her hospital gown and I tried to control my tears.

They asked who would carry her to surgery and Charley responded, “Her mother,” faster than I could say, “I think I’m going to throw up.” I went to the restroom and did just that. After that I got on a mask, hair covering and gown of my own. Then I carried my confused little baby into the surgery room. I set her on the table and tried to calm her as they put the gas mask to her face. I wasn’t doing well so they kicked me out while she was still crying and struggling against the mask. It wasn’t the way I wanted to leave things, but I was about to pass out.

The waiting began. Then everyone was distracting  me, although I demanded more than peek-a-boo and stuffed animals. We waited for a billion years which actually turned out to be a little less than three hours. Then the surgeon came to tell us how it went. He said it went well and he only had to use one pin. He also decided to only work on three toes once he was in there. We’ll see how that will turn out. Then he said that she should wake up in about 45 minutes and one parent could see her at that time.

Then we went back and waited again. This time I was going crazy. I had written on EVERY form I filled out that day that I wanted to be there the second she woke up (or even as she woke up), and was terrified that she would wake up and be alone and terrified.

Then almost an hour later they called on the loud speaker for one parent of Laelia Wesley to go to recovery. So I left and went to recovery. AND NO ONE WAS THERE!!! I said, “Hello?!” in the worst, shaking voice, and NO ONE answered. Then I ran around the hall looking for another room marked recovery. Then I stopped two medical-type-looking menfolk walking down a hall and started panicking as I said, “My daughter! Where is she??! She was in surgery and now she’s not and.. WHERE IS MY DAUGHTER?!!” They directed me down a hall which turned out to be WRONG! Then I found another medical-type women (who I yelled at), and she directed me down a hall that ended at a door marked “hospital staff only” with no way to open it without a pass. And at this same exact moment I heard some little ones crying on the other side, and recognized one of those voices as my daughter. (I turned out to be right, but couldn’t know it for sure at the time.) So I began to pound on the door like a crazy woman. And I mean POUND. I tried to tear the door apart with my bear hands as my dad and sister (who finally came out to help me) backed away with a scared sort of look. Then someone came out and directed me back to the original room (now occupied with people), and showed me down a hall I didn’t see before to a window I was suppose to divine was where I waited for someone to notice me. Then I was told in a harsh tone, “Stay here,” as that women disappeared down another door for hospital staff only. I think my Christian response was something to the effect of,  ”Like hell I’m staying here.”  So I followed her and pushed my way in. Then finally a nurse asked who I was here for (and said it like I was about to kidnap everyone in the room) and I said, “Laelia,” and they took me to my baby. Once I saw her I started balling. I got control of myself before I approached the bedside of my pitiful-looking child. When the harsh-toned nurse asked if I was “okay” in a tone that spoke volumes, I went off on a diatribe, “No, your incompetent, idiotic staff…” in a cooing tone while looking at my child and brushing her hair with my hand. I pretty much told the nurse off while hushing my child. I had Laelia in my arms within moments (which was hard with the wires and leg cast) and she immediately calmed down. Then the nurse said I needed to put her back on the bed so they could wheel her to long-term recovery, to which I simply replied, “No.” So the nurse then went to another nurse and switched out. (See, I’m scary!) The new, slightly intimidated nurse asked if I would like to be wheeled into the other room in a wheelchair while I held my daughter. That’s better. I made sure to be incredibly sweet and nice to this new nurse. “I like you,” I responded, trying not to smile because I would show too many teeth and scare her away too.

I guess Charley had the same experience as me when they finally called for other family. He came out and announced himself to the first person he saw with a clipboard, and was given a dirty look as that person took off. Then he just planted until we found him. Stupid system. Retarded!

The thing I had worried about was that Laelia would freak out when waking up without her mom. Well, sad to say, I was right. Her heart rate climbed so high that she worried the staff. When I came in and she saw me, her heart rate immediately went down. When I went to the other side of the bed to pick her up, there was a moment when I was out of view and all her monitors started beeping loudly as her heart rate jumped up to 190! (100-120 is normal.) Then when she saw me again and I lifted her into my arms, her heart rate dropped down to normal. Now imagine being asked to put her back in the bed after that! But I was a good girl and didn’t kill the nurse.

Once in the long-term recovery room I noticed just how out-of-it my baby looked. But she was alive. And surgery was over. And she was in my arms.

She had a rocky start after that. Her oxygen was too low (making everything beep and a doctor run in), then her pulse was too high. Well, REALLY too high. It jumped up every single time I stopped physically touching her. At one point I put her in the bed and noticed both my legs and the arm she had been resting on were all asleep. So I had to put her in the hospital crib, but I leaned my whole self over her with my other arm under her and rubbed her tummy and chest with my free, rather numb hand. (It was a weird sensation to remove my hand from my daughter’s chest and at that same moment have two monitors punish me by beeping loudly! Her whole system was only going to behave if I was loving on her.) The thing that shocked me was how much pain she was in. She was so confused and scared. It was hard to see. I’ve never seen her like this. Her oxygen was making me dizzy and my back was killing me, but I didn’t realize it at the time. Only when Charley came back from his trip to the apartment and took over did I realize I had been standing and hunched over in that position for five hours.

After that I threw up again and had other bad side effects from worrying. I’m realizing more and more than I’m a weakling when it comes to this stuff.

She said her first words around 8:45 PM. She looked at me clearly (she had been pretty hazy up until this point) and said something like, “Ga boo ma ba?” Then her eyes hazed over again and she was crying. Then around 9:15 she allowed me to put her sippy cup in her mouth and she took a sip. Her throat burned (they put a tube down it that they didn’t tell us about) so she didn’t like that. Then they brought us some apple sauce and said she needed to get something down or they couldn’t release her the next day. So it was stressful when she couldn’t get anything (food or drink) down until eleven hours later!

The next day we got books from her room and some other foods from home and she did much better. She was able to get down the apple sauce from the night before and also some crackers. That’s all we needed to be able to give her the oral medication… that she spit out. *Sigh* But then we tempted her with two hours of Elmo (kill me), and she did even better with the medicine. Elmo got grating by the end, but since she doesn’t watch tv at home, it was a special treat that kept her attention. Well, that, and reading her favorite book a literal 16 times in a row. Charley and I switched off for that one.

Then we got to take out her IV and go home! She cried a bit in the car, but fell asleep. For some reason she didn’t like right turns. But we were so thrilled to get to take her home! When we got home we fed her more, more oral medication too, and had group nap time. It was great!Mommy, daddy, auntie Em, Grandma, Grandpa and baby all took a nap. We were tired! She was back in her own crib and was looking less pasty. Her lips were pink again and she had real clothes on! It was a sight for sore eyes.

We fought off a bit of a fever after coming home, but it left as soon as it started. She ate her dinner fine. She has sat on the couch with her leg elevated while everyone takes turns distracting her since then. For the next surgery when the grandparents are gone, I may elicit help with this. It takes a lot to distract a post-surgery baby.

But she’s doing so much better now that she’s home! She’s doing so well. So so well! She laughed! And she can focus her eyes! And she can eat! And she hasn’t thrown up once! And she’s swaying to some music right now. And she’s holding her stuffed kitty. And she’s telling us what sounds different animals make. She does cry when we move her or lift her, and she is fussier than usual, but I’m so happy with how she’s doing. I really thought after our rocky start that she would not be doing well. I was thinking the worst. I’ve been feeling her heart and it’s normal. She got a bit more out of her lungs too. She’s kinda raspy and the nurses and assistants asked me if she had a cold before surgery… um, no, I’m not that stupid. But then the doctor informed them and us that this was normal for post-op. We cheer when she can cough it out. We cheer when she eats. We cheer when she says anything. She’s pretty spoiled. And that’s how it should be.

I honestly have no earthly idea how we are going to do all this again in two weeks. But that’s still the plan. And her left foot is worst off so it may take longer. I’ll be glad when it’s all over with. But at least this next time I’ll know exactly where to go for recovery. And Charley will be the one to carry her into surgery. And we’ll know what stuff to bring. And maybe we can borrow a computer so we can give better, more timely updates. Lots of things to plan.

Dear Potential Visitors of Laelia,

Okay so we found out today via phone that Children’s Hospital is not allowing visitors (besides Charley and me) in the waiting room due to, get this: Swine Flu!!! Of all the BS! So now my family can’t comfort and distract me??! It’s so stupid! Also I can’t see my baby until after she wakes up! So they’re letting the tiny baby who’s not yet two-years old wake up in a strange room without her Mommy?! STUPID!!!  

This whole thing makes me sick. I’m going to try to be nice to the nurses tomorrow while at the same time trying to weasel out of all their stupid rules.

So I guess Laelia will be on the 3rd floor of the orthopedic building like I said before, but that’s just to check in. Then she’ll be in a different place (they’ll tell us where when we get there) for surgery, then a different other place for recovery, then a different different other place for long-term recovery. Sooooo… yeah. I’m guessing she’ll be all done around 6:00PM and we may get moved to long-term recovery after that, and then maybe visitors can come then?

I’ll try to keep people updated as best I can tomorrow without having any technology on me besides a phone.

None of her bones are where they should be. Her heals are empty of bones and her ankles are way up into her legs. All of her toes are curled by the pressure. Something has to happen and fast.

*Laelia would just like to mention that she hates x-rays.

Laelia’s AFO shoes have helped considerably, but the problem is worse than we thought. It turns out her hips are greatly affected too. That’s why she sits with her legs so wide apart and can’t seem to straighten out. She’ll never stand or straighten out her body without intervention. Stretches are no longer gaining ground, at least not in the lower half of her body. 

*Laelia would like to mention that getting into Mommy’s purse has been fun but not completely errased the x-ray memories.

Day one.

I know I haven’t written anything in a while. I think that’s because I didn’t *need* to write anything. This blog is usually a form of therapy as often as it is a way to update the grandparents on what Laelia’s doing. And she has been doing great! She likes to mock me recently. If I hiccup, you’ll hear her little chorus of pseudo hiccups echoing shortly after. She loves to kiss things–her teddy bears, pictures of people in books, keys on her play piano–pretty much anything she’s thrilled with at the time.

She’s also whip smart. She knows the tune to the entire Twinkle Twinkle Little Star song and will sing it three times in a row the whole way through. (She sings “bah bah bah” instead of the words.) She knows if Mommy sits down at the computer that she won’t be getting attention for a few minutes and will automatically find that she is in some peril at that very moment! (Daddy kissing Mommy usually triggers the same response.)  She also knows to throw her head in the direction of the cookies and say, “Ah” in a loud voice during meals. (This little trick has gotten her some cookies for breakfast from Daddy while Mommy’s at work.) Speaking of cookies, it’s amazing what the all-powerful cookie can do. Lali has an “I’m too disabled” look, or at least that’s what we’ve called the look she gives us when she doesn’t want to move. Kids know how to work with the excuses we give them, and too many people are too forgiving of her tantrums because of her disabilities. So when she doesn’t want to do something she’ll fling her legs uselessly and look pathetic.So when Lali gives us that look and won’t roll across the carpet to come to me, it’s funny how two seconds later she magically figures out how to maneuver around furniture to do the same task when there’s a cookie involved.

Her language skills haven’t improved as quickly as we would like. She mostly says “ga” for things. But her reception skills are tip top. For example, she can’t say “chin” yet, but if I ask her where my chin is she’ll reach for it. She actually recognizes everything on my face, but the only thing she can name with any consistency is “eye.” (Sometimes I’ll be lying down with her on the bed and hear her exclaim, “EYE!” a splint second before mine is assaulted with dirty fingers.)  

Our house has turned into a baby-talk center. Everything has a name and is repeated several times while she plays with it. Then we use that word in several sentences. Then we ask if she can say it, and any attempt is praised and praised. I sound like an idiot half the time I’m on the phone, because I have to take breaks from my conversations to repeat a vocab word Lali has discovered. And Laelia LOVES the attention that vocabulary games present. She knows how to say something very close to, “What’s that?”  Then she loves to be rewarded with learning whatever word she wants. Of course without her being able to point well or lift her arms, sometimes I just guess what she wants or I’ll start naming everything in the general area.  Oh, well, Laelia, that’s the fireplace, chair, changing table, teddy bear!  I had my hopes up that school would increase her vocabulary. She was scheduled to start on September 10th. But that plan looks to be derailed.

We found that Laelia’s first major, scary surgery is being scheduled for September 16th. Not only that, but her second major, scary surgery is scheduled for only two weeks later: October 1st! The first surgery is for her right side and the second is for her left. They are going to fix her hips, feet and ankles and all ten toes. Oh and some tendon releases. She will be in a full-body cast for 3-4 months afterwards. More casts. I hate casts. So much.

I knew this was coming, but I put it out of my head. There was this big surgery looming over our family like a black cloud, but I always told myself it wouldn’t happen for a few years and I could relax. Then to find out that the surgery is around the corner, and it’s not one major surgery, but two! And it’s not just for her feet like we first thought, but also her hips! It was like a sucker punch to my gut. But the way Lali’s body is growing means we can’t put this off. I’ve been in a state of shock and tears. My brain keeps screaming, “But she’s so little! She’s just a baby! She didn’t do anything wrong!“ 

I find myself worried and stressed to say the least. I have this sense of dread when I think about her going under the knife… twice! She’ll have to stay in the hospital overnight both surgeries. That means that without complications it’s at least four days in a hospital. And she’ll have some pretty ugly permanent scars on her hips, feet and long ones up both thighs.

And complications can range from minor to major. My biggest concern is the anaesthesia. Arthrogryposis kids have problems withthe anaesthetic. I have these visions that she will go in for surgery and never wake up! In fact, I’ve been mentally preparing myself for her death. It’s morbid and unhelpful, but after losing my mom and grandma and others, I’ve learned that death is very… easy. We don’t think about it, because if we did we’d go crazy, but it happens all the time. I don’t like her surgeon either. He doesn’t care about us emotionally so how can I trust him with her physically? On this site somewhere I have a whole blog that is one big angry rant against this man for being an insensitive bully, and now he’s going to be cutting into my baby! It makes me want to scream!

So, gosh, I don’t know. I don’t know so much about this surgery. They tell you the basics and then you come up with questions and talk to the assistant. I don’t know if she’ll be able to sit in a carseat after this or anything. I have so many questions and can’t think of any of them right now because I’m so scared.

So that’s what’s going on. I can’t hold her enough right now. I know I need to think positively. I’m trying. But I can’t hold her enough.

I just fed her a cookies for lunch.