Laelia Sky

Laelia is doing so much better! I’m so glad that it wasn’t as bad as last time. The pain is connected to her left leg and hip and aggravated by picking her up or moving her. Two years ago she had the same thing only on her right side, and much worse for much longer.

She did really poorly that first night of pain (Sunday night), but now (Tuesday afternoon) she hardly notices it at all! What an amazingly fast heal! We’re still careful with her, and I did accidentally hurt her last night carrying her to bed, but it’s so much better now that we’re not worried about her at all!

I’m very thankful right now. I hate mysterious pain! I hate feeling so helpless! I hate when my daughter is hurty, and she gives me that adorable, pitiful face with the pinchy-cheeks and pouty lower lip. Acc! Just stab me in the heart! But thankfully this wasn’t as bad as last time. Nowhere near as bad!

I really appreciate all the prayers and warm thoughts from my family and friends. Sometimes it’s hard for me to feel like God cares about these daily pains and heartaches of ours that don’t effect the rest of the universe. But if I think about it, I’m surrounded by people in my life who care! And I have to give him some credit for that, since I could never have attracted people of this caliber on my own.

I hope to handle these situations in a way that shows God I care too. I care about the things and people he cares about. And that means I VERY MUCH care for my daughter, who has to be one of his favorites.

So last night Laelia was sitting by her puzzles when she begged, “Mama hold me!” I was busy on the computer so asked her to scoot over closer to me (several feet) so I could reach her. This led to her asking, “Daddy carry me to Mama!” Cute. We assumed she was being really lazy. She just fussed and fussed about moving. Finally she got close enough for me to pick up. Unfortunately she had a garden gnome in her hands (that she calls her “man”) that she randomly plays with sometimes even though it’s heavy. Well she was in my lap and dropped that thing right onto my toe. I jumped around a bit since it hurt, and it made her cry louder. She’s a sensitive little thing so I assumed she was spooked that she’d hurt Mama. But that’s when her leg/hip pain was getting really bad. Picking her up had her arching her back in pain. I took off her pants and looked everywhere for a bruise or cut, but saw nothing. She barely touched dinner and was up until midnight in ouchy pain.

We think it *might* be transient synovitis (irritable hip) since she’s had it once before and it went away a week later.

She had this back in October of 2008.

It happened while I was in Washington DC.

Thankfully my dad and Grandma Christina were there to help Charley take care of Lali. Also we did x-rays and nothing was broken, but doctors couldn’t be sure that some small break hadn’t happened that they couldn’t see in a child that small.

I hate seeing her in pain. I know that surgery will be 100 times worse, but that ouchy face makes me wanna cry. I hope this goes away faster than last time, and she is back to her old self soon.

Poor baby.

Laelia wanted more candy (aka those gummy vitamins), but Mommy said no.  So Lali, being the nice little girl she is, said she wouldn’t ask for them anymore.  So *she* didn’t.

She also blames her invisible, imaginary animals and babies for almost anything that would usually get her in trouble. Me: “Who is that yelling?” Lali: “Mama, it’s my giraffe.” Me: ”Where is he?” Lali: ”He’s… um, over there!” (pointing wildly out the window)

Gotta love her.

Click on this one for the video.

Walker Walkin’

Penny Party!

Pudding Practice

Playin’ Prayin’

Flour Power!

Trouble Double!

Disabled!!! (*point point point*)

Pegged. You got us. Ten points for observation.

But think about this: You had a conversation with a two-year old who speaks in full sentences using mostly correct grammar. She was bright and social and friendly.

Come on, admit it; you wish she was your kid. (I mean, how many times do I have to pull her out of other people’s grocery carts and remind them she’s MINE!)

So I beg you, seriously now, please see my little girl for more than her physical disabilities. Or if you can’t help yourself, don’t bring it up all the time with me! It’s the least you can do! That’s what spouses and friends are for. Talk to them!

I’m not denying she’s disabled; I just don’t utterly and completely define her by that alone.

Yeah about that last sentence: It’s the whole point!

Which reminds me of why Laelia’s IEP was so hard for me. I had to face the fact that Laelia isn’t dressing herself, using the potty, walking to recess… But I was so thankful that her IEP was with people who are wonderful, and saw Laelia the Child, not just Laelia the Liability. I’m not guaranteed to have people as wonderful for Laelia’s entire school career.

In IEP-related news, Laelia will be starting a wonderful preschool on September 20th! She’s super excited and asked to start this Monday. She’ll be a student, NOT a “disabled student,” and I expect her to fit in gloriously well. One of her friends will be attending the same school, and they may be in the same class. She’s been talking about him ever since she found out. God help the boy–Laelia is a veritable (verbally verbose) friend. Just like her… um, *daddy* (cough).

We had our enrollment appointment for preschool yesterday, and everything went very well. I have a feeling that the principal is nervous about having Laelia there, but other than that feeling, everyone was really great. Laelia even walked out the door with a borrowed book about gravity. She has until September to pronounce the word “gravity,” and give it as an answer to the question, “Why don’t things fall up?” Right now if you ask that question she replies by making crashing noises and falling over.

So Laelia starts school next month, turns three-years old the following month, and has major surgery the month after that. And, really, the first two things on that list scare me almost as much as the third–and those are the “normal” things!

Actually I’d love for someone to explain to me why I can talk about doctors sawing into my daughter’s legs with a straight face, but talking about her turning three-years old makes me sob like a crazy lady! Anyone?

So in conclusion, don’t define my daughter’s life by her disability. She’s a bright, charming, willful, beautiful, almost-three-year old (*sniff*) little girl who has a purpose on this earth that has nothing to do with making others feel better about her physical disabilities.

So I had to leave my two-year old upstairs in my bedroom to run downstairs when my cell phone rang. I took my time downstairs since I didn’t hear any complaints about my absence coming from upstairs. But after a while it was almost too quiet so I headed back up. When I got back my daughter was gone. Then I noticed that the bathroom door was shut, and we always leave it open. So I opened the bathroom door and it was pitch black inside. I couldn’t open the door very wide since something was blocking me. So I snaked my arm through the opening and flipped on the light. The view I got was Laelia’s “caught” face, which, if you’ve never seen it, is hilarious. The next thing I noticed is that in the dark with the door shut, Laelia had managed to open the bathroom cabinets and pull out a giant box of Q-tips–like an economy, Costco-sized Q-tip box. Both little fists were filled with Q-tips, there were Q-tips all over the the floor, and another few piles in starburst patterns inside the cabinets. There was a paper towel roll we keep in there for cleaning the mirrors that had every single one of the paper towels pulled off and crumbled up around the floor. My personal feminine products were in similar disarray. And in the middle of the giant mess was my frozen solid little girl, still clutching her Q-tips and looking like a deer in headlights.

So I walk into this scene and all I can do is stare in amazement. Laelia had managed to scoot in there, shut the door, open the cabinets and wreck havoc in the space of ten minutes! Wasn’t this girl suppose to be disabled?! I starred at her in shocked amazement.

She stared back, completely guilty and quickly responded, “I kweening it up.”

HAHAHAHAHAHAHAHAHAHAHA! I haven’t laughed so hard in forever! Oh thank you little girl for helping me clean the bathroom! Haha! Why oh why don’t I have a picture?!! Boohoo.

Today we visited our friends who go to The Fellowship, a church down the road from our apartment. They had a BBQ and giant slide for the kids. Adam climbed up it while Charley handed Laelia to him, and I watched below in horror waiting for those crazy guys to topple the whole thing over. The giant slides were not made for disabled kids… or full grown men! She loved it though, and demanded it until they were all exhausted.

We were walking to our car afterwards and went past one of those SLOW DOWN CHILDREN CROSSING signs in the shape of a child running. Laelia asked what it was and I overheard her daddy reply, “That’s the Christian Crossing Guard.”

Laelia (in an all-knowing tone): “Oh. Yeah.”

Charley her daddy: “He’s the second one. After the first one was raptured, they made a new one out of plastic.”

Laelia: “Oh.”

Charley: “And if we all pray real hard, one day he’ll be a real boy!”

Laelia: “Ohhhhhhh.”

Mama: *Sigh*

I just feel so blessed (lucky, favored and loved) today. All my worries today have seemed to work themselves out. I have a feeling my future worries will do the same. No we don’t have a house, a wheelchair or a winning lottery ticket, but as we go through these struggles step by step, we have a new success each day.

I have amazing, wonderful friends! Some who have worked hard with Lali to get her where she is today. And others who have made the atmosphere around her positive and joyful! I can’t thank everyone enough! Just when I get discouraged I get a wonderful, caring email or comment on the blog or a message on facebook. Or in one case, a juicer! Or a bright conversation that makes my whole day! I love being around positive, encouraging people! Charley and I often talk about how blessed we are. We’re hanging on, and we’re not alone.

We have new leads on getting airline tickets to Philly for Laelia’s surgery. (Thank you once again Tracey!) We have a pretty good idea that the Family Medical Leave Act will cover at least one week of being gone, then possibly the second trip there entirely! We hear all the surgery details tomorrow morning. (I’m waking up at 4:30 to catch the nurse in her office at 7:30 Philly time.) Laelia just fed herself a pudding with a spoon and didn’t get anything on her clothes. And my husband just helped me clean the apartment! What a great weekend!

My aunt, Linda R., explained Laelia’s surgery to me better than the hospital did in June. I’ll quote her here: “Bilateral – both sides; proximal – nearer to the body; femoral – thigh (bone); reorientation – change position; osteotomies – bone cuts.” So there you go!

A ton of my online friends are at the annual AMC (Arthrogryposis Multiplex Congenita) Convention this week in Florida. I’m waiting by my facebook newsfeed for all the pictures and stories to come! I’m hoping we’ll be able to attend one of these! I think they should do the next one in San Diego and make everything easier on us.

We had Joshua (Laelia’s friend who’s almost two) over for the weekend. This was Laelia’s first sleepover party… and it was with a boy! Haha! I may be setting a bad precedent. But it was fun. His parents had their anniversary this weekend. Joshua’s mommy, Megan, watches Laelia during the day so they’ve known each other for a while and get along. Laelia likes to boss Joshua and Joshua likes to chase the kitties, a match made in Heaven.  Joshua also liked to push Lali around in her cart and they both liked to make tents out of a blanket over the coffee table and go exploring with my flashlight. A flashlight that they subsequently break several times. It was fun, but Charley and I both agree that two toddlers out match us. We’re spoiled with just one mild-mannered little girl who can’t reach most of our nice things. We have new respect for Megan’s talents when she’s here watching them both by herself!

Alright must get the little girl to bed. She told me she’s on a trip to a castle. Now she’s a tiger. A BIG tiger. Not a baby tiger. Rrawr. A juggling tiger. Who juggles. Now she’s in the zoo. Would you like to hear her sing? That’s what animals do at the zoo. Tigers also don’t have to eat dinner. And they get balloons. Green ones. 

I LOVE MY LITTLE GIRL! 

For those of you who don’t know, my daughter is scheduled to have bilateral proximal femoral reorientation osteotomies on November 11th, a little over a month after her third birthday. That is a huge, major, body-altering surgery on both femurs just below the hip. Aka hip surgery. Aka terrifying.

I’m having a hard time getting a hold of the nurse coordinator, except for the occasional email with promises of future phone calls that never happen. I’ve been waiting three weeks for a phone call. Now she’s telling me Monday. I know they’re busy so I try to be patient.

During this phone call I get to ask all my questions, but I’m at a loss of what to ask. Just try Googling that long-winded surgery name to understand my frustration! I need to know everything, and I need it super dumbed down for me!

But as soon as I do get to ask my questions, and subsequently get my answers, then begins the arduous tasks of faxing over paperwork, meeting with her local doctor to keep him in the loop, figuring out flights and planning extended time off work. There’s a California program that may cover some of my leave without pay for the second week in Philly that I have yet to research. Then I have to set up accommodations for the 9+ days we’re there and start saving towards it. I think Ronald McDonald House is going to be our home away from home. I just wish I could schedule staying at the one closest to the hospital ahead of time!

In the meantime, my baby is going to turn three-years old on October 3rd. This is very emotional for me. She’s getting to the age where she’s going to start remembering some of these surgeries. I’ve never before in my life worried so much about one little person! What will she think? How will she feel? Will the medical stuff ever end? How can we make her life normal? Will this surgery allow her to stand without her knees being fixed too?

It does help that the surgery ended up being in November. Originally we were going to try to have it in September, but that’s just around the corner! I need more time than that. The only bad thing with November is that it’s too close to Christmas. I believe (although I have to make sure this is still the case) that we have to stay in Philly about two weeks for the surgery, then fly home, then fly BACK to Philly six weeks later. That puts us in the Christmas flying season. And I still have no idea how we’re flying both trips, all three of us.

I’m doing this wonderful study of Ruth with some girlfriends. I have a workbook to answer questions as I read the history of Ruth. In the workbook it asked what legacy I’d like to leave. Even thinking of the future (legacy or none) stresses me out. I couldn’t even answer the question! But I don’t think anyone asked that of Ruth; it would have stressed her out too. And the answer at one point probably would have been, “Die in poverty as a widowed migrant worker.” I think it’s better to focus on the second/minute/hour that you’re in. Work a hard day’s work and stay focused on it. I can only do this journey if it happens day by day. Because I could look at my list of everything I have to accomplish before November and pass out! So one day at a time. One moment at a time. One weekend at a time. And God is ever present.

Front view

Side view

I’m-tired-and-tumbling view

So super exciting news in Laelia land! She can now stay on all fours (feet and hands) for two minutes! She can’t yet get herself on all fours, but she can request the back-breaking chore of either parent. Then once in position, she can keep it up all by herself! For almost two minutes! We’re excited!

She can also get up on her hands and knees, although it’s a little harder. I keep having a dream that she goes from either of these positions into a crawl! I hope it’s not just a dream. She can kinda do an army crawl. So hard for her to get a foot or knee to move forward (totally missing those muscles), so we’ll see. But still exciting! Eeeeeeeeeeeeeeeee!

Here’s a video! Click HERE!!!