Laelia Sky

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.

I forgot to update everyone on the doctor’s visit. It went well. We changed up Laelia’s diet a little and haven’t had any problems with food coming back up since. She is back to the energetic, talkative little kid I’m used to. We haven’t had a single problem in days so we even sent her to school today and rescheduled our OT/PT appointments.

The only issue we’ve had at all is Laelia’s new lack of interest in food. She only eats a few bites of food and is losing weight. I wonder if all the throwing up made her distrustful of food. I ended up giving her six little cookies last night for dinner because that was all she would eat, and I was worried about her wasting away. Chelsea also found some lactose-free milk that is packed with calories which she has been drinking a little of.

Well in other news, Lali looked well enough to pose for a few pictures for our Christmas cards this year. The picture above is one I won’t be using, but one I thought was cute. It’s the only picture where the hat is not driving her to hysterics.

We also put up our tree. Here’s a picture of it before the cats got to it. She now says, “Cheeeeeeeeese!” when you take her picture. It’s so cute!

Merry Christmas!

Lali threw up again this morning (Monday). We have a doctor’s appointment for her tomorrow morning (Tuesday). Between the stomach flu that’s going around and holiday schedules for doctors, it’s not easy to get an appointment, but since she has a gain-weight order from her doctor and she hasn’t eaten really anything much in almost a week, we get to take her in. I really thought this was behind us, but her hair and bedding are once again disgusting. She’s also having diarrhea. I Just pray this doesn’t last much longer. Now she won’t be able to go to OT or PT that she really needs. She has a broken splint that has needed fixed for days that she’s going without. I hope this is over soon!

I guess that last post first thing Saturday morning was the very last time we’d see stomach contents this year. (Knock on wood.) Maybe it was a fluke? I dunno. Anyway, the rest of the day Saturday went okay. That afternoon I gave her hair the baking soda paste treatment for two hours. She loved that. Yeah. Not.  But at least it did the trick. No more puke. No more puke smell. I like it. Here are the pictures. I won’t give you the before shots (because I’m nice), but here are the during and after shots. (The white stuff is baking soda paste, not puke. The puke was orange.)

Not happy.

Daddy is making fun.

All clean!

I am so very thankful for my healthy family! Charley and I have been over this stomach bug since Friday so to see Lali (who started before we did) take this long to get over it was hard. She was her old self again today except she’s not eating much. She had three bites of toast with peanut butter for breakfast and two bites of green beans for a snack, milk for lunch and then three bites of spagetti for dinner. That’s not counting the countless things I tried to feed her that she spit straight out. We’re not taking to her to school tomorrow to see if she’ll eat and nap like normal. And if she looks fine and eats fine then we’ll take her to her PT and OT appointments which are long overdue because of Thanksgiving and also scheduled for tomorrow. In preparation for OT/PT I did Lali’s stretches today. Boy did she not like that! She was so stiff! I bet it felt good afterwards! I did notice her hips are a lot stiffer. I’ll have to keep an eye on them.

So far today I’ve cleaned my couch, my tables, my puke bucket, scrubbed spots all over the house, used up a can of Lysol and almost an entire box of baking soda (which takes the smell out of everything!), did the dishes, washed four loads of laundry (with soap and baking soda), changed the sheets, cleaned out the crib, picked up the living room, dusted the bedroom and put up our stockings and a Christmas tree! I’m feeling like super mom again! Charley, among a few other things, did all the vacuuming and is folding all those four loads of clothes as we speak. I’m also hoping he’ll take out the trash. Life is good.

Thanks for all your prayers and thoughts and support! Oh and advice! I’d never had the stomach flu as a family before. Not really the bonding experience I was going for.

Day Three

Lali woke up in a ton of puke and diarrhea again this morning. She’s on her forth bedding set, and since we only own one, we get creative with towels for pillows, etc. I heard something that sounded like gagging this morning and I was thankful that we remembered to prop her up last night so she didn’t drown in it since she doesn’t move much. She’s so miserable. And because of her arthrogryposis, her flexibility is poor since we can’t stretch her. Changing her diaper was hard since her legs wouldn’t relax.

She is keeping liquids down. Mostly powerade. Except this morning, I really thought she was on the mend. Thankfully Charley and I are doing a little better so we can care for her more.

Our tub clogged with puke. Apparently she puked in the bath one too many times. So gross. My whole apartment is SO gross! When Lali is doing better we’re going to use a baking soda paste to soak everything. But please no visitors! We’re definitely on quarantine! Thanks!

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!

Singing Along with Rock Band

How do you keep a baby busy who has to sit all day? Get out some plastic guitars and a fake drum set and put Baby on vocals.  The picture is of her doing her version of  Yellow Submarine.  Did the Beatles ever fuss when people weren’t watching? Hmm…

We’ve been doing good, just a slight cold running through the house. It’s decided to live forever in my face without getting better or worse. Nice. Does this get me out of reading? No. I still am required to read until my sore throat gives out and I start a coughing fit, and even then the little girl is pretty demanding about more stories.  

On a totally random tangent, I found I have an aversion to people saying they should “count their blessings” after seeing my kid (or a picture of my kid). Not cool. I don’t look at a picture of them and say, “Wow, thank the good Lord I’m blessed with the face I have; it could be a lot worse.” Rude. I know it’s suppose to be a positive thing–thanking God for your working body parts and all, but think before you speak/post/comment/blog. Seriously.

Okay tangent over. 

Laelia went to school today and once again I am impressed with how her language is developing. We had Subway for dinner and at one point she leaned over and said, “ah aha ah AH AH AH AH!!” like a baby bird who will drop dead without a bite of food. So I said, “Say ‘Sandwich please!’ and I’ll consider it.” So Lali responded, “Sa-wash peees!”

Oh gosh, she sure doesn’t like mustard. You should have seen her face! Ha!

Grandma Christina and Grandpa had to leave early this morning because Grandma got really sick. I’m starting to feel it in my throat as well. Hopefully it doesn’t spread further. Charley was blowing his nose, but that’s about as much as colds affect him.

Laelia seems to be fussy, but not with a cold we don’t think. Although sometimes I look at her and think it’s a cold. She’s very white and covered in big purple and blue bruises from four attempts at an IV line and one IV line mark. It looks awful.

I remember when we were in the hospital and I saw her for the first time after surgery and she looked so white and pale. Like death. All of the color was out of her cheeks, and my heart sank as I looked into that pastey face. Then THREE different nurses commented that she looked exactly like me! Yeah we’re pretty white in my Irish family.

Laelia used a toothbrush all by herself to brush her own teeth for the first time in her life yesterday. She also learned to “go on a bear hunt.” She slaps her casts to make the walking noise and can say, “Oh no!” when her troop runs into something they can’t go over and can’t go under and have to go THROUGH!!! Then she screams along with the rest of us. It’s just the cutest thing. Everyone surprised me with this when I got home from Deaf Awareness Day.

Okay well we’re resting up today and both go back to work tomorrow. The weekend went by too fast. What are the odds of a snow day tomorrow?

Bleh. Last night was not fun. Charley and I quickly discovered that we couldn’t take shifts when she only takes her milk from him and her medicine from me. And since she has to take calories with her medicine, we did this together all night. Charley still went to work this morning.

Charley kept trying to call a doctor last night, but they didn’t return his calls even when he said he was an insurance company or doctor’s office, and the number we were given in case this very thing happened “closed” at 4:30 PM leaving no operator there to help. So then I called some numbers I was given after her first tendon releases when she was a newborn and one of those got through to a real person who got a doctor!

We got into our pajamas then back into our clothes several times last night as decisions were made to take her to the emergency room and then plans changed. (Usually in tune with the texts, phone calls and facebook discussions happening around us. :)) Apparently last night I had no Mommy instincts whatsoever and was just waiting for someone to tell me what to do. Usually if it were not surgery-related I would just keep her home. But after a surgery, I was too scared to do that. But the doctor finally called us back around 10:30 PM as we were leaving for the emergency room, and told us to stay where we were since they had sent us home with all the medication we needed to handle this apparently. And sure enough we looked in our magical bag they gave us and saw medicine for the shakes, the higher fever, etc. Her temp was down to 101.5 by then and the doctor was happy about that. He says it’s not an infection unless it’s still around three days later. Of course he called us after we already had her awake and ready to go to the hospital, so she was pretty unhappy with us. At 1:30 AM she got more medicine and was down to 101.1. Then at 5:55 AM she was down to 100 even. Her shakes were also gone around that time too. Her throat is sore from screaming at us, but she’s looking a lot better this morning.

Tired zombie mommy is going to take a nap now.

2:00 AM Update. Laelia’s not doing well. Her fever is down to 101.1, but she is now shaking and spasming. We gave her medicine for that specifically. Doctor is not too worried about the fever unless we can’t get it down more soon. He said she would have to have it another day or two before he would think it is infection. Her heart rate is through the roof though. She’s so pitiful looking–all teary-eyed, shaky and smelling like burned meat. It’s hard to see her like this.