Laelia Sky

Come get us!

Not really helping…

We asked her to go backwards… Use your legs, child! Not your head! Haha!

Ram into Adam! Good girl!

We are very thankful that we get to semi-permanently borrow a walker for free practice with it at home! From what I understand the company who loaned it to us are hoping we get our power wheelchair through them and make them lots of money.   And if we can only get one big piece of hardware with the help of insurance, they want it to be the expensive power chair and not the semi-expensive walker. So it’s in their best interest to let us borrow a walker for as long as we need it. Cool, eh?

Best of all, our friends have helped encourage Lali to use it even though it’s hard! Lali saw Grandma Deb and Grandpa Gary on Friday and had some walker fun on their back porch. Chelsea offered to lug it with her when she watched Lali that morning. Then we went to a double birthday party on Saturday and Lali got to use it around all of the party guests who cheered her on.

I think we’ve figured out the perfect walker combination: hand grips facing up, one knee immobilizer on her right leg (since it has the worse contracture), the left side of her seat hitched up (where her hip has the worse contracture), the back wheels locked so they can’t turn, but so they can go backwards, the front wheels able to turn all directions and a nice level surface that’s not carpet. Even still she moves very slowly if at all. Still, it’s neat to see her upright!

While we were at PT and OT we met our friends: Rosa and her mom, Leslie! So how do we “meet” friends? Well we became friends online, but had never met in person before! (Um, I have a LOT of these kinds of friends.) Here is a cute picture of Laelia and Rosa. Rosa has arthrogryposis too. For whatever reason it’s the only picture that came out. They were giving each other hugs and kisses. So cute! Lali wouldn’t let go of her PT slip that she has to hand to her therapist so it was hard to give hugs.

We also signed some hospital paperwork saying that Children’s Hospital can use Laelia’s pictures for anything and everything. I can’t help it if they think my daughter is super beautiful! I guess they end up using her pictures a lot. Apparently they have a good one of her at four months old in splints that they used at some official function and needed to make sure I was still cool with that. Laelia’s pictures also go with our OT who is a hand specialist to her lectures in other parts of the country.  So in exchange for Lali’s picture, I got a couple pictures of Lali and Jill (our OT) doing therapy.

Therapy is fun!… You know, for Lali too.

So all in all a good day at Children’s Hospital. An aide helped me into my car with the walker. The darn thing doesn’t fit in the trunk so we had to load it into the front passenger seat. I drove home with one of its front wheels in my face the whole time. I managed to get all the way into my apartment complex parking lot before bursting into tears. Thankfully Lali was sound asleep after such an eventful day.

I don’t know why I was so upset to the point of balling. I can’t tell you if it was gratefulness at getting to use a walker or if it was pain at the reality that my daughter needs a walker and looks ”more disabled” with it. Or maybe it was a combination of both. I figured I’d get all my tears out in the parking lot instead of bombarding Charley with them, especially when he’d likely ask what was wrong and I DIDN’T KNOW, but my car was not as private as I thought. The neighbors, a family of three, caught me.  The dad helped me carry the walker inside while I carried my sleeping beauty.  They didn’t mention the fact that I had a walker (even though I don’t know for sure that they know about Laelia’s condition), and they didn’t ask questions. They just smiled and helped me carry stuff through our shared gate. For some reason that was comforting. It made having the walker less awkward. It helped my mind to make the connection that the walker is a good thing–a good, helpful thing–and an everyday thing. It helped me feel normal. I think for someone to achieve that act of magic–making me of all people feel normal–then God must have been helping to quell these emotions before I could even put a name to them.

Very thankful.

We survived! Four hours of sleep. Four planes in two days. Air sickness. CONSTANT Laelia chatter/attention grubbing! Five partial viewings of Finding Nemo. Sore arms that ache. Bruises from carrying the car seat. Ripped our bag open. Got lost three times. Stress. Got lectured by a flight attendant because my daughter was sitting instead of standing. Cried twice. Had to advocate several times. It was hellish. Travel. Ugh.

And there was a point, after getting lost (again!) while driving around Philly, then being two hours late because we went to Temple Hospital instead of Shriners Hospital, when I wished the doctors at Shriners would be mediocre so I’d never have to do this trip again. Never again!!!

Unfortunately for me and fortunately for Laelia, Dr. van Bosse is now our orthopedic doctor!

And we’ll be back to Philly three times in the next 14 months if things play out right. Yes, that means surgery. I didn’t schedule it yet since I need to plan the time off work and to talk it out with Charley, but it most likely will happen as soon as we’re available. ASAP. Probably after this summer. I’ve already met with the anesthesiologist, Dave, and gotten the details. Now it’s a matter of logistics, and processing.

And since we live so far away, they’re going to treat us like an international patient (since people with AMC come here from all over the world), and try to limit our trips back and forth. Maybe we’ll do a few follow up appointments in San Diego then forward the results to Philly. They’ll also be in contact via email and phone.

We’re not doing the derotational osteotomies on her knees we’d heard about in Seattle, not yet anyway.  We’re doing a surgery that makes much more sense for right now (a whole methodology that makes much more sense), that will allow Laelia to put her legs together where the IT band releases (surgeries from September and October) could not.

So far our surgeries have focused on soft tissue issues.  But Dr. van Bosse is going to focus on her overall body shape and do a surgery to cut and reposition the bones in her hips to fit what her contractured body is already doing. And the result will allow her to do more and look more like a typical kid. (Notice how I didn’t say ‘normal’ kid? See, I’m learning. ). It’s called a reorientation. (It’s also called a big, long four-part name that my sleep-deprived brain could not retain.) We’ll get everything in writing first then contact them to set up the appointment. It puts us in Philly about 9 days, then flying home, then flying back six weeks later for the cast removal (and they may give us KAFOs at this point since they’ll be casting her for them before surgery). Then flying home. Then flying back in a year to get pins, clamps, etc, surgically removed and start a new surgery on her foot, etc etc. Our future may be tied to Philly for quiet some time.

Since her hips are in the sockets, but they’re externally rotated and contractured, this would be the best surgery for her. But I didn’t have to just take Dr. van Bosse’s word for it, as so many doctors expect, but instead he pulled up a few other patient files (children with arthrogryposis who had been through this surgery) and he showed me their progress. We had taken Laelia’s x-rays while we were there. (She’s less scared of the machine if she can be a ham. “Smile for your picture, Lali!” did the trick. ) This allowed us to compare her x-rays with other kids with arthrogryposis until the doctor found one with the same shaped hips and legs in their x-rays. Then I could see that child’s x-rays after they had had this surgery and know exactly what to expect Laelia’s surgery to look like. It was exciting.

Dr. van Bosse wasn’t just showing me what he wanted to do, he was showing me what had worked for other kids! An amazing experience! A new experience.

I have met with doctors who didn’t even know what arthrogryposis was, or had trouble pronouncing it, and some of them even gave us advice on surgery or therapy. Even our expert surgeon in San Diego who does have experience with arthrogryposis seemed to pale in comparison with Dr. van Bosse’s experience. It felt like we’d arrived at arthrogryposis mecca!

We also met with Dr. Kozin. It’s fun to get looks of wonder from your doctor instead of horror that your child has so many degrees of passive range in her elbows. Doctors who are familiar with arthrogryposis know Laelia is lucky in this regard. Where other people would bemoan the fact she can’t lift her arms (including me at times), these guys are in awe of the fact that she can reach her mouth and doesn’t need surgery! Oh and Laelia had not known Dr. Kozin more than 30 seconds before falling in love.

I have several more pictures like this. If Dr. Kozin was the cuddly doctor, Dr. van Bosse was the playful doctor. Lali just giggled as he measured every joint, instead of fussing like she usually does.  She seemed to like everybody. Ooh she liked Mimi too!

Mimi too!

Her “airplane hair” afro for the trip. You can’t see it, but on the other side I stuck her comb in her hair and it stayed.

So glad they put these racing cars in every room! Vaaarooooom!

Laelia was such a good little girlie for this trip! I was specifically worried about this. I mean, sure, she was demanding, but mostly in a sweet way. She doesn’t sleep on airplanes so she had to be constantly entertained (constantly) on all four flights. I felt like Super Hero Mommy by the fourth flight. Well she did finally pass out on the last flight home at around 11:00 PM. And she fell asleep for almost 40 minutes in between flights, including sleeping through a shuttle ride.

Another huge blessing was that we got to stay at the Erie Ronald McDonald house!!! I called as soon as our plane landed in Houston (the day of) and got the okay! (They don’t make reservations so you call the day of.) That cut out having to search for a hotel or make other plans last minute. It was an amazing house! One of the roads on my Google directions was closed so it took an extra 45 minutes to find it (d’oh), but once we got in there they were so nice and friendly. I had just been on a plane with a mean person who made us feel terrible that Laelia couldn’t stand or walk. Long story. So when I put Lali on the floor to scoot around and saw a Ronald McDonald volunteer approach her, I inwardly tensed. But they just wanted to play! The volunteers were all amazing! There was always food around even though we never made it to a single meal on time and there were plenty of relaxing areas to unwind. Laelia loved the therapy dog, Boss, and they gave her a free toy doggy that she adores too. We couldn’t enjoy all they had to offer since our schedule was so tight, but I really hope they are available to house us again when we go back for a little over a week.

Only bad thing about Ronald McDonald house is that it had this magical ability to keep Lali up all night. She slept five hours. I got four. We tried her on the floor where she screamed bloody murder for twenty minutes. Then we tried her in my bed with two chairs with large backs against the side of the bed so she wouldn’t fall off. She played, she sang, she screamed. It was enough to drive me crazy. She even removed her splints, DB bar brace and was starting on her AFOs before I stopped her. She started hitting me in the face at one point. And kicking the bed over and over and over. Then she got really upset that Pooh Bear didn’t close his eyes to sleep. She kept trying to close them and telling him to go to sleep already! Haha! Every time Laelia gets in trouble, it’s not long before Pooh Bear is in the SAME trouble! At Tim and Nicole’s wedding last week, Laelia lectured Pooh Bear about keeping quiet during the ceremony. SO STINKIN CUTE!

So when I woke her up at 8:00 AM to leave, she was so out of it. She gave me the same look she had given me the day before when I woke her up for an early flight. That “Are you kidding me?” look.

Exact words, “No Mama. I asleep. Bed pweese.”

I mentioned I got lost… yeah, just about every time I got behind the wheel.  Maybe it was the lack of sleep or the noisy kid in the back seat, but I’m pretty sure Philly is just a ridiculous place to drive in. Not only that, but I got lost in a not-so-great part of town. It’s funny because this great hospital is surrounded by ghetto neighborhoods. And if the jay walking, lack of clothes, yelling, kids drinking of a broken fire hydrant or constant sirens weren’t clue enough, we were warned it was “ghetto” by hospital staff, other people who have been there, the car rental guy and several patients. So getting lost at night down one way streets was not fun.

Okay so I’ve hinted that we had a bad experience with yet another airline person. But after four flights in two days it could have been worse. We got our tickets for Continental flights through Mercy Medical Airlift, and appreciated it so much! That said, there were a few things I would have done differently if I had been booking my own flight. Not having to get up super early or get home super late would have been one thing. Getting window seats for the car seat would have been another thing. Getting wheelchair or special assistance set up before-hand would have been a third thing. But Continental employees were helpful. When we first arrived I had two of them cooing over my kid. Always the quickest way to my heart. Then we got wheelchair assistance, and knowing how to request it now, had it properly set up for our connecting flight in Houston. They even gave us a ride to our connecting gate, which would have been difficult to make otherwise. All in all they were very accommodating and I don’t know how I would have lugged everything I had to lug without them.

My only two complaints have to do with arbitrary rules and one flight attendant’s enforcement of these rules.

Seriously having a personality that HATES breaking rules or getting lectured on breaking rules AND doing four different flights in two days gives me perspective on how arbitrary these rules are. Flight #1 required we put a car seat in a wheel chair and have an employee wheel her down the ramp backwards. I couldn’t touch her until we got to the plane’s door. Flight #2 was similar, but they insisted I check the car seat, which didn’t end up happening, more on that later. Flight #3 I was informed that under no circumstances could she go down in a wheelchair. It was unsafe and against airline policy! Seriously? I’d just been on two flights with them yesterday and the story was different. Flight #4 they made a big deal about it. I was given options. Did I want her to go in a chair? Or be carried? And how could they help? (I felt like they were saying, “Why are you putting us in this situation?”) I just wanted to say, “Just tell me the exact policy and stick to it! I’ll follow whatever the rule is!”

Not just entering and exiting the plane, but on the plane the rules tended to change. It wasn’t until flight #3 that we were told our portable DVD player was against the rules. It had to have head phones. Flight #2 all the flight attendant said was, “What movie is that?” And Laelia said, “NEMO!!!” And that led to a couple minutes of Laelia explaining who every character in the movie was. But one flight later it’s against the rules. Okay…

Oh and placing the car seat was a pain. We had a window seat on Flight #1, but on the rest of the flights we had an aisle seat for the car seat. On Southwest, the week before, we were told putting a car seat in an aisle seat was against FAA rules and that this applied to every airline. But here it was okay I guess. It all depends on the day, and the whim of those enforcing whatever rules.

Okay so back to Flight #2 when the incident happened. They demanded I check the car seat. Since Laelia can’t sit in a regular seat and WILL NOT keep her seat belt on for any length of time, which leads to battles the whole flight, I had to insist that I didn’t lug this thing around for fun’s sake. The flight attendant then wouldn’t let me board for several minutes while I stood at the front of the plane and she inspected my car seat while grumbling loudly. I must have heard, “You need to check this,” several times. Telling her I’d been on five flights with it in the last two weeks, one just a few minutes ago, and it was just fine, only led her to speaking to me in a less friendly way. A few long minutes later they found out the seat was approved (which is what I’d said all along) and let me on. It was at this point that I took the opportunity to explain why Lali needed the car seat, and I informed them that Laelia had disabilities, and without working arms to break her fall, turbulence could knock her around in a big seat. The only reason we have to buy a seat for her is because of airline rules. The only reason I bring a car seat is for her personal safety. I was apparently ignored.

Later on in the flight the seat belt light went off and I was able to get up with my kiddo. I knew I wouldn’t be able to do her daily stretches here, let alone some PT, but I did need to get her joints moving somehow. I went to the back of the plane by the restrooms after I’d seen two other parents of small children take them back there. I put Laelia down on her bottom and she stretched out a bit. This is when the incident happened.

A lady who was not nice to begin with, let’s call her Cindy because that’s her name, lectured me on how dirty the floor was. I’ve heard this from so many “concerned” people that I was tempted to ignore her entirely, but I did respond that I didn’t mind about the dirty floor. It’s funny how people don’t care about the bottoms of kids’ shoes getting dirty, but the bottom of their pants is a different story. But, no, that wasn’t good enough. She insisted that I should immediately get my child off that dirty floor. And that being there was “terrible.” I had seen other children stand just where we were and they were not told about how filthy it was, so I then restated that I knew it was dirty, but it was fine for her to be dirty. She then ordered me (not joking) to get my child off the floor right now! I got my advocate hat on and asked if this was a written policy (since I hate breaking even stupid rules, it’s against my personality) and she said it was! No being disabled on the plane, folks! I asked for her name, intending to introduce her to Laelia and get Laelia involved in the discussion. I’d heard that works really well and is a nice way of informing people without ostracizing Laelia. But I got so much fire back from that lady that it sent me to tears and I found my voice, along with my advocating powers, diminish under her anger. In fact I was so distracted by the way she spoke to me that I didn’t notice a guy behind me who needed by, which sent Cindy into a rant about how my child was blocking the aisle! I moved, Laelia didn’t, and he got by fine. At this point Laelia started to fuss, which led to tears. Cindy ordered me in a nasty tone of voice to pick up that child right now! I pulled her in my arms and she screamed, “NO NO I STRECHING! MAMA NO!” How terrible for a girl with contractured joints! I put her in the bathroom stall to get away from Cindy and sat there stunned until the fasten seat belt sign came on.  Not being able to stay in my shelter after that, I moved back to my seat, but on the way I tearfully explained why we were even back there to the fellow employee who had witnessed the whole thing. He apologized for Cindy, said she was wrong, but he seemed slightly afraid of his lead flight attendant. We took our seats and tears wouldn’t stop, but I hid them well. I heard Cindy complaining about us to the guy we’d just spoken to and he told her about Laelia being disabled and not able to stand up, which sent her into a rant about how right she was despite the circumstances. We were in row 34 of 37 so I could hear her in the back. Not every word, but I heard her. I was trying to gather my thoughts. Were we really just discriminated against for having special needs, because we couldn’t stand like the other children? Or was there actually a rule we broke? That kids who don’t have disabilities don’t break? And if so, is that a good rule to have, Continental? As I thought about it, I could hear her still going off behind me. Her tone of voice was like a knife to my insides, from three rows away.

If she indeed had been working for Continental as long as she says and was a lead flight attendant, what kind of training had she not been receiving for those many years?

Thankfully, and I could have kissed her, Cindy showed back up at my seat to tell me off some more! (Or maybe to apologize? But you can’t apology if you’re “not wrong” so it came across badly.) Yay!!! Now the tears had cleared, my thoughts had cleared, and we were both well aware of her discrimination against my daughter. Mama Bear was back in action! I said things like, “I appreciate being warned about unsanitary conditions, but I do not appreciate being ordered to pick up a child when other children were allowed in the same area under the same conditions!” She tried to tell me that the seat belt sign was on during this, and I interrupted and informed her that that wasn’t the case, and it only came on after we entered the restroom. And, after hearing in the pseudo-sweet voice that I should really ask to be seated in row 7 next time, (grrrrrrrrrr), because they can put down a blanket or something for her, I responded, “Look, I am the expert in my child’s care. And we don’t appreciate being treated this way.” BOOYAH! Thank you thank you thank you so much for coming back and not letting this end with me in tears and my daughter undefended! Finally Cindy and I could not come to an understanding and she left. (In other words, we were both “right” in our own eyes.)

So okay that was hard. I was already so stressed about what we’d learn the next morning, and part of me forgets my kid is disabled until she’s treated differently than other children, like she was on that flight. But nothing could be funnier than when for Flight #3, the very next day, I get on the plane and who do I see? Cindy! Again! She was as surprised as I was, “Wow, you again. That was a fast trip.” She said. I responded, “Yep.” Then Cindy jumps over herself to get my bag, ask if I’d gotten to switch to row seven for this trip (no) and snaps at fellow co-workers to help Laelia and me. Hahahahaha! I texted Charley, “Guess who our flight attendant is again?” And he texted back, “NOOOOOOOOOOOOOOOOOOOOOOO!”

At one point in the flight, Laelia said “hi” to Cindy and Cindy was like, “Does she want something? Water? Can I get her water? Does she need something?” Wow, I think she had a day to dwell on our experience and found herself in the wrong. Or at least very much in trouble if I wrote a letter… which I am *that* person who rights letters, so she’s rightfully freaked. I asked Laelia if she wanted anything and she says, “SOCKLET!” (Chocolate) So Cindy came back with Hersey bars for Laelia who gobbled them all up! Spoiled kid!

I really have to consider my own actions and reactions in these situations. I feel like I’m getting stronger as a mother, but I’m still awkward in these situations. How terrible it would have felt to have ended with me crying in the bathroom? I know I don’t like authority much because I’m a pleaser and authority can take advantage of that, but I do want what I want, and I want to do what I think is best for my child. Of course I don’t want to push or bully, and often have difficulty finding a balance between nice and pushover. But in this case I believe we were 100% in the right. Which is a position I’m most comfortable with. And I’m so oo oo writing a letter.

There were lots of times I felt discouraged on this trip and was almost immediately reminded that people were there for me. At Flight #3 when all the rules for entering the plane changed (overnight, I might add) I got a text from Lauren saying she was praying for us RIGHT NOW. I also got a couple similar texts from Chelsea at just the right times. And my dad even called and left a voice mail message that encouraged me as I was absorbing the news that we’d be back for another major surgery or two.

All in all I felt this strength and peace that isn’t something I naturally carry around with me. I felt God’s presence during these really  hard times. I’d be in a situation I couldn’t handle, praying for help, and nothing around me would change, but I would change. I’d feel the strength to read Laelia yet another story. And for those of you who get motion sickness (or what I call air sickness), you know how awful reading can be during those times. But we did it. And Laelia doesn’t seem worse for wear. I’m exceedingly thankful to God for his provisions when I was all alone and responsible for my daughter’s care.

Okay I blogged about it. And once again informed my spell check that “Laelia” and “Arthrogryposis” are words. Now I’m adding “Kozin” and “van Bosse” to the list. *sigh* Now I’m going back to bed.

WE HAVE FLIGHTS TO PHILLY!!!!!!!! THANK YOU MERCY MEDICAL AIRLIFT!!!

We’ll be taking off for the airport at 4:30 in the morning on the 17th and arriving home from our trip close to midnight on the 18th.  Now I just have to figure out how to entertain a bad, cranky flyer for two straight days of flying across country.  And maybe entertain Laelia too.

Today I’m working out a place to stay–a much easier task now that we’re certain we’re going.  And I have to figure out how little me is going to lug around a baby who doesn’t walk (or stand so you can’t always put her down), our giant book of medical records, our personal stuff and a car seat! We’ll probably need a rental car.  And we (and by “we” I mean YOU CHARLEY ) still need to fill out all that paperwork that Shriners mailed us.  And we’ll maybe borrow a portable DVD player and Elmo DVDs. And pack. And write out questions. And and and…  And I hope you’re reading the excitement in my voice/words at the prospect of these tasks. It’s an exciting time!

Well, exciting and scary. Now we see what the expert says. This is our last hope in a lot of ways. Our Obi Wan. I’m nervous about it, and burying myself in the planning stages lets me avoid thinking about it.  I start to wonder if those other doctors are right–that Laelia is the worst of the worst when it comes to her muscle weakness and won’t be able to move around much on her own.  :-/

I don’t *need* an ambulatory daughter (despite what Disneyland rides that limits her to), but I do *need* hope that maybe one day she’ll be ambulatory. If that makes any sense. I think I’m okay now with Laelia’s disabilities because she’s still young, and I’m nowhere near done fighting for her. I guess I just pray that I don’t come away from this exhausting two days a depressed mess.

And it’s funny to actually be hoping for giant, major surgeries across the country. Ones that don’t come with a 100% guarantee.  If it was me I’d want to be made straight and take that chance, however slim, at walking. But it’s not me; it’s someone much more precious. And there’s a risk that, because of the  severity of the joint contractures in her hips and knees, we end up surgically getting her in a position to stand (because she physically can’t do it now) then find out she won’t be walking or standing because of muscle loss. (And surgeries also diminish her muscle strength!) So you can imagine how heartbreaking it would be to go forward in hope, then end up with a straight, scarred, non-ambulatory baby girl who now has the added disadvantage of being stuck in a “bad” position for comfortable wheelchair sitting.   Because with arthrogryposis you are stuck in one position with limited range of motion, like a flimsy cloth doll with joints made of metal. So you pick: standing or sitting, legs bent or legs straight. Then you cut and solder back together as necessary and hope it stands up under it’s own weight.

So what to pick?  Dear God, help!

I think we’ll mostly rely on Dr. van Bosse’s extensive experience with arthrogryposis cases.  We only get something like 45 minutes with him, so I pray he sees what he needs to see and has the wisdom to know what to do. And if we get an answer that depresses me, I’ll trust that to be our best advice for now and determine to have peace about it.

Or forget Obi Wan, I’ll go find Luke.

[Want to see some videos of my daughter doing amazing new things? Scroll down to the bottom of this post! But if you want to build up the suspense, which is way more fun, please continue reading!]

For a quick update on our Philly plans, we submitted our application to Shriners yesterday morning. Now we wait a month to see if we’re accepted. Her doctor will be Dr. van Bosse. He’s emailed me a couple times and seems optimistic. In fact, to quote him, “I’m certainly interested. Am in Peru at the moment [...]. One important point that experience has taught me, even at 4 years old, it can be difficult to figure out who can walk. These kids keep surprising me! Don’t give up hope easily.”

Then after I gave him links to her website with pictures he wrote, “I’m very encouraged by what is see in the pictures [...]. I certainly see every reason for working towards maximizing her potential.”

!!!

He continues, “[...]  Unfortunately, Laelia’s treatment will need some planning of the stages, therefore I would have to see her first, independent of any surgery dates, but we will try to limit your back and forth travels as much as possible.”

So now I’m saving up for yet another long trip with my kiddo, and hoping for a side order of derotational osteotomies. We’re thinking that Laelia and I will just take a couple days off work/school for a long weekend. We’re trying to decide if we should do it now or wait the six months other doctors are recommending. Lots to think about. I guess it will mostly depend on when we’re accepted and what we can afford. I’m just hoping Dr. van Bosse is as encouraging and optimistic in person as he is over email! And from all accounts and testimonials, he is! 

We had an appointment with Laelia’s pediatric orthopedic surgeon this morning to go over what the Seattle doctor talked to us about. In the waiting room Laelia said, “Look a baby!”  The only other kid in the room looked to be four so we asked where the baby was. She responded, “The baby’s over there in the picture.” Whoa. Full sentence, clearly stated and masterfully communicated!  Sure enough, behind us was a blown up and framed picture of the doctor we were about to see holding and examining a baby. We hadn’t really noticed it. My kid is SO FREAKIN SMART!!!

At the time of the appointment we had to admit that Laelia couldn’t sit up by herself, even with assistance, or do a lot of other things. This was also written in the Seattle doctor’s letter to me. So I had no idea what what coming later this same day!! (Oh but getting ahead of myself.)

Once again it seemed the doctor had one foot out the door from the moment he entered our room. After the initial greeting and exam, I turned to grab my list of questions off the table and when I turned back I noticed that most of the doctor’s back was to me and he was inching towards the door. That automatically stressed me out and would usually lead to me skipping questions or lumping them together. But this time I just calmly and defiantly wasted his time. We walked out with FOUR prescriptions: wheelchair, knee immobilizers, pool therapy and hippo therapy. Then my husband added, “See if you can get a prescription for a pony!” So when the wonderful surgeon’s fellow returned with more prescription paper I added, “Also Laelia would like a pony.” He responded, “So do I!”  Haha!  Now where can I find a pharmacy willing to fulfill that order?

I don’t know why these appointments get me so down. The surgeon is always cracking some joke and then lightly scolding me for having no sense of humor. In fact it’s kind of formulaic: he cracks the joke, I put on a small smile, he puts his hand on my shoulder then looks around the room as if to say, “Everybody else thought that was funny, right?” then the other doctors/fellows smile and nod, then I get some small lecture on how I need to relax.

He doesn’t get it.

But at least he’s skilled at what he does get. I mean her feet look great after he got to them. Not perfect, but excellently fixed. (Plantigrade is the word.) I think part of the reason I feel so down after these appointments is that I’m being faced with the harsh realities of her disabilities. Day-to-day life doesn’t bring that up. In fact both her father and I forget she’s disabled most of the time until certain events bring it up. In lots of ways she’s the typical happy-go-lucky kid. Then we go to this kind of doctor’s appointment and realize she’s not so lucky. And often we’re given a rough pessimistic guess of how she’ll be in the future from a doctor who probably couldn’t recognize her face in a picture line up the next day. (Well that probably isn’t true. They do know who she is. In fact one of the doctor’s fellows rode with us in the elevator and out of nowhere she said, “Oh this is Laelia!” I didn’t really recognize her right away (we’ve seen this doctor only a few times), but she was one of the doctors who observes Lali’s appointments. So because she’s such a rare case, maybe Lali is popular after all. :)) 

I felt pretty down afterwards. I found myself praying she would prove them all wrong in the six months they’ve given her to magically build enough muscle so they can operate. Dear Lord please!

But I haven’t gotten to the amazing part yet!

An orthopedic wedge costs around $250 depending on what you get. I found a 30 degree orthopedic bed wedge for adults (different use, same idea) for $60 so I ordered it. The Seattle PT recommended a 45 degree wedge, but I just couldn’t find one that was cheaper than $200 so I went with the 30 degrees which is much more difficult to use. The Seattle PT expressed some doubt that she could sit up with just 30 degrees, but Lali doesn’t need to do a straight sit up; she can use her arms.

Laelia sat up by herself (using her wedge) for the first time I’ve ever seen! And the best part: I got it on camera!!!

Laelia also can now do a push up and lift her pelvis so that her weight is more on one knee!!!

So needless to say I’m no longer feeling down from my morning appointment. I’m blessed! I’m thrilled! I’m drowning in answered prayer! I’m singing songs and dancing! I realize I’ve been trying to ”fix things” and I’ve had to let go and realize I can’t fix this. I can do exercises that help her, sure, but I can’t make her not hypotonic anymore.  But my God is so big, so strong and so mighty, there’s nothing my God cannot do!

(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!

Physical Therapy

This is the year for mobility! We’re working hard to see Laelia sit up, stand and scoot before she turns three! We found out at our last trip to the PT that her body is still not in the position for standing. That’s what the surgery was for so we’re bummed as you can imagine. But she is much straighter! We have some new hip stretches for her (that she hates) and some new weight bearing positions for her (that she hates more), so we’re hoping all this hard work will pay off before next October. If not, then we’ll see if another surgery can’t do the trick. I’m pretty optimistic though.

It’s weird, sometimes she can’t do something that I would think she could do, like get out of a kneeling position on the couch, and then other times she does something I didn’t think she could do, like scoot across the living room!

Here’s the video of the scooting!

We found out some interesting things this week and I’m not sure what to make of them. Apparently how her hair all seems to come from that whorl in the back and then sweep to the side (she doesn’t have a straight part like me) is due to her arthrogryposis and the position her skull was in while in the womb. Also her labia didn’t fully form since her legs were so wide spread in the womb. It probably won’t affect anything, but who knows. Just random things for Mommy to worry about.

Anyway, one thing the surgery really helped was her feet!

This is before her bath so there’s still crusties on her feet from the casts.

Happy girl!

~~~

Progression of the left foot:

Left foot at birth.

Left foot after minor surgery AND serial casting.

Left foot after major surgery!

Go lefty!

Third set of casts in two weeks. At least they’re cute, short and of course PINK!

Laelia’s casts slipped. AGAIN!!! Once again I find myself heading to the emergency room at Children’s Hospital, getting redirected to the clinic casting area and getting an emergency cast removal. (Fine. I didn’t want to work today anyway. *sigh*) The pin in her left foot had come up again too. The difference this time was that Laelia’s surgeon was in the building at that moment (being followed by his posse of three other doctors) and willing to see me! Fifteen minutes later (which is like a split second in doctor time!) he was checking out her feet and giving the okay for removal of the casts. He asked the tech to try to save the pin, but then later decided that the pin was just going to keep popping out so it was removed instead of screwed back down. (So much for Daddy doing the second pin removal. *sighs again*) All over again the baby girl gave a noise like she had been shot by a gun, then came the blood… and they asked if  I  was okay!?! I was thinking, “Forget me! Just take care of the my baby!”  Well that was followed by thoughts of, “Don’t pass out don’t pass out don’t pass out don’t pass out...”  Anyway, she was then recasted in short casts without a bar to avoid future slipping. New casts. Oh joy. At least there’s no more pins in her feet!

The casting tech asked me what color I wanted for her new casts… um, is there any other color?  

Laelia screamed as soon as she saw the surgeon all the way until we were almost home. She screamed for the entire cast removal and even louder after the pin was removed and then pretty darn loud as they recasted her. She was also shaking like crazy, bright red in the face and drowning in her own sweat. She HATES this! Then she cried through the check out process, getting my parking validated, the looooooooooooooong walk back to the car on the second floor of the parking garage and most of the way home. I got all sorts of looks and stares and pointing fingers from people. That’s unusual for this little girl–I mean that’s a little over two solid hours of screaming. Laelia had a miserable time.

So we decided when we got home that the rest of the day today will henceforth be known as Laelia Day! I promised her that she could have whatever she wanted for lunch and dinner. Any snacks she wanted. Any nap time she wanted. And we’ll even watch cartoons! When we got home she demanded I read her every book we owned! That took a while. Then she wanted some time with Puppy (the name of our kitty), who just had to put up with being pinned down by me while Laelia happily tugged her fur. Now I’m all scratched up. Then Laelia got to play in my purse and she got my cell phone out and started to dial numbers. Sorry strangers! What can I do? It’s Laelia Day!

Hooray!! Happy Laelia Day!

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.

This surgery went a lot better in some ways and went a little worse in a few other ways. We knew what we were doing this time around. For instance when they call you back to wait for surgery and also when they call you back to hear how the surgery went, you go to this same dreary little room that’s poorly lit. So we always turn on all six of the x-ray light panels that take up an entire wall to see better. It really lifts the mood in the room when there’s lots of light. Of course when Charley went to take Laelia into surgery a nurse came by and asked why an entire wall of light panels were on when there were no x-rays to see. How do you explain to an all-business nurse that you’re all alone and your baby has been taken to a scary surgery and you need the “feel good” lights? I just shrugged and smiled until she left. :)

Once Laelia was out of surgery, instead of waiting around for them to call me and for me to get lost somewhere like last time, I waited a little while and then marched over to the recovery area and said, “I’m here to see Laelia.” They said she hadn’t woken up yet and it’s against policy blah blah blah, and I said, “I’ll wait here,” as I leaned over their desk and refused to move. Then I asked every 30 seconds to see my baby. It worked pretty fast. Pretty soon afterwards I was calling my husband and announcing, quite proud of myself, “I’m watching our daughter sleep. Squeaky wheel. Love you, bye!” I’m glad I was there because it took her a lot longer than normal to wake up. The doctor came by to check on her because she was still asleep past the 40 minutes after surgery. The doctor told me something about how Laelia was probably still sleeping because she wasn’t scared and felt safe since I was there. That made me feel good since I had been singing to her the whole time she slept (which was over an hour and a half), until I realized that that answer was most likely BS. But at least I was there watching her sleep and knowing she was okay and alive. If I had had to wait in that waiting room for over an hour and a half of her in a baby coma after surgery I would have freaked. Even rock-steady Charley was starting to worry.

I noticed that she had wonderful vitals when I sang to her. Actually once I started to sing her bedtime song to her and her pulse started to race like she was agitated. I realized she never really liked that song because it signaled the end of play time and meant she would have to go to sleep by herself in her crib. So it was kindof eye-opening to see which songs she liked as she slept. There were obvious favorites. Her pulse and blood pressure couldn’t lie.

By the way, the nurses were so wonderful this time around. Our check-in nurse was giving us useful advice, making sure she spoke to Laelia’s kitty like he was the one getting surgery and even tested his stuffed vitals before testing Laelia’s, and she also told us about how to get free dinner and how to get information during the surgery. It was a much better experience when the people cared!

Laelia was doing better physically this time around so they stuck her in a busy room with two other kids. One was screamy and whiny and getting her way an awful lot because she broke her arm and the whole family felt sorry for her. The other little girl was a total brat who bugged everyone from the nurses to the receptionist to other families and children, “Make your baby stop crying, I’m trying to heal over here!” This brat finally chased away her mom who slept in a different room and left her free to terrorize the nurses. She would page the receptionist all the time and order them around. She demanded ice cream and when they would bring her ice cream then she would demand a popsicle. Charley spent the night with Lali and they both got a total of three hours of sleep because of all this, which disrupted Laelia’s recovery process quite a bit. Laelia was fussier than usual and totally sleep deprived. We wondered if the pain meds were working and went home with some stronger stuff just in case. If I had been there I would have asked for another room.

But other than that, only a few hours after surgery, Chelsea and Adam brought over Golden Spoon and Laelia asked for some. So I gave her a small bit and waited for her to spit it out. But she just demanded more and more and more! Her poor sore throat! But she was eating and talking and doing so much better than last time! Last time (only two weeks ago, but it feels like months ago) she didn’t say her first word until 9:00 PM and didn’t eat anything until the next morning! But this time she was eating frozen yogurt and a roll and a bite of turkey and drinking a ton of water.

Well the ton of water backfired because she wet her bed and her clothes and everything else. Changing a baby’s diaper is just so hard when that baby is in two casts with a bar between them. Not only that but she had surgery on her hips that are just bandaged. I’m going to need to buy some onesies since she can’t wear pants now either.

Once we brought her home she went to sleep for four hours! When we went to check on her we noticed that her toes were purple. So we called the doctor and rushed back into the hospital for an emergency cast fix. We were an emergency case so they rushed us through… which took two hours. I’m so glad her toes didn’t fall off! But other than that adventure, she did beautifully once she was at home and able to rest.

Oh and there was only one time when I went into a room I wasn’t suppose to. I was in the bathroom when they called us in to tell us how the surgery went. Charley went in with the nurse and disappeared. By the time I figured out where they went I had to muscle open a hospital-staff-only door, working against the mechanisms that would usually prevent entrance. I really don’t even blink when I do that stuff now. I have no shame.

But Mommy, I’m too sick for surgery today! Oh wait, that’s a nail file. Oh, did I get in Mommy’s purse again? Oops.

Off to second surgery with kitty.

Laelia and company looking up at our reflections on the ceiling of the elevator on our way to the surgical floor.

They gave a medical bracelet to kitty. They also gave “good girl” stickers to kitty too. Actually everything they did to Laelia (including checking vitals) they did to kitty first.

Laelia and kitty in their new casts with bars!

She sleeps better in a lap.

Hospital crib.

After four hours at home her toes turned purple so we went back to the hospital to get the cast changed.

Now we’re back home and keeping fevers away. Laelia is fussier than last time, but we’re keeping up with her pain meds throughout the night. We have Grandpa and Grandma and Linda here helping to distract her. So far so good. We all watched Jeopardy tonight as a family and cheered on Lynn Swanbom who won! We got word that my Aunt Charlotte is done with her heart procedure. She had two holes in her heart. Now she’s resting and healing. It’s so encouraging that we have no more surgeries for a while–for anybody in the family! Well off to bed. We’ll be getting up every four hours. Then I’ll be working all day tomorrow at a conference. If you want to come to Deaf Awareness Day, I’ll be at the DSP booth! Night-night!