Last night we tried out Ryan’s walking sticks. Remember Ryan? Laelia’s true love?
Yeah that’s them together. Awwwwwwwww.
Anyway, she did really well! I mean she just started really taking a few small steps in a walker this month so these crutches are major league for her.
Getting up is hard.
She fell back on me a lot.
She doesn’t know about this.
I don’t even know what she’s doing here.
Walking rock star!!!
Here’s a long video of her doing it for the first time if I remember correctly. Here’s another shorter video of her second or third attempt. I was just thrilled with the fact that she tried them and didn’t get scared! Ever since we got her KAFOs she’s been a little afraid of heights. “Heights” being the whole three feet from her nose to the ground. So I’m thrilled Laelia was willing to even stand up with those wobbly things. I think falling practice in PT and doing the parallel bars has really helped her overcome her fear. I went online that night after we got home and ordered her some crutches of her own. (I got some good advice to not wait on insurance like we have been.) They should arrive Thursday! I’m so excited! Early Christmas presents! And Laelia is excited too! She doesn’t treat walking like other physical therapy excercises, but revels in the independence. Her doctor (van Bosse) commented in an email after seeing her YouTube videos, “For her, learning to walk isn’t a chore, it’s a passion.”
When I asked her what color she wanted her crutches to be she was so impatient, “Green! Or pink! Or white! Just buy them!” Ryan’s were blue, do you want blue too? “Yes. Or black. Or purple!!!” How about princess purple? “Yes! Are we buying them now?”
Next in line. “I have my feather! Ready to fly now!”
Too short.
Trying on her glasses for the new Star Wars ride, but she wasn’t tall enough (by three inches). So her nice parents went without her (taking turns). Mama ended up being the Rebel Spy!
That hand over the face (meaning she doesn’t want anything else to eat) was hard to do! She’s having to claw her own face to keep it on there. Funny thing.
It was training day at Disneyland. Handwritten note at top says, “It’s OK. Trust me.” (To let Laelia go through the back of a line without a power chair.)
(Hip plate removal surgery marks Laelia’s fifth surgery and she just turned four years old.)
Thank you for all your prayers and words of encouragement and well wishes and positive thoughts and everything else! This was our best surgery yet! And I’m sure all our friends and family contributed to that. My cousin, Josh, also put something on his music blog for Laelia. So sweet.
I don’t know where to start. Well I’ll just say I can’t believe we made it to the hospital by 6:30 a.m. after three hours of sleep. (Considering it was 3:30 a.m. in California.) We’ve looked better. Laelia was her usual chipper self so we gave her the stink eye a lot.
It’s a practice at Shriners Hospital for Children for the anesthesiologist to carry your child into the surgical room without her parents. In San Diego I would get into full scrubs and follow her in and help her get through the scary gas mask, etc. Here I just watch as they take off with her. So how do you get a perfect stranger to carry a child into surgery without the child freaking out?
You get them drunk. Really drunk.
There’s a medicine they give them orally that makes the kids so loopy and crazy that it provides a bit of dark comedy right before they leave. Laelia is the funniest drunkard ever. She’s goes from being scared to grinning her head off at everything. And her big head just bobs like her little neck has no power whatsoever over it’s course. Her cheeks get rosy and she starts talking nonsense too. It’s the best. Charley went to get out the video camera to record my daughter making a right fool of herself in my arms when the anesthesiologist came for her. Then it became a little heartbreaking.
Surgery went well. She was under for only about two hours. A bit of bone grew over the right plate so they had to chip it off before removing that plate. But my biggest fear was evaded: none of her bones broke! And that means this is Laelia’s first ever surgery where she did not go into casts afterwards!!!!!!!!!
She came out of her deep sleep a mess. She screamed her head off. I walked into the room with her crying and the apologetic nurse saying she hadn’t been “doing it long.” Who knows what that means. I went to her side and sang to her. She just cried loudly for a while. The nurses were asking where the pain was. Finally Laelia just shook her head. I asked her, “Are you in pain?” Laelia shook her head. “Are you just mad?” Laelia nodded and said between gasps, “Saaaaaaaaaaaaaaaaad toooooooooooo!” Poor thing hates surgery.
Reassured her pain meds were working (remember our failed epidural last surgery?), I rocked her in a rocking chair and then we transported a calmer version of Laelia to the fifth floor for recovery. She cuddled and fretted and finally fell asleep. So did her daddy.
She woke up and drank a little. A good sign. She hated her IV and would cry out saying she was in pain, but when we asked where the pain was she said her hand. Well her pain should have been in her hips where the surgery was, so I can only assume she was trying this ploy to get us to remove the IV. She would have done anything to get that out and even attempted to do it herself! Good thing they tape it down on kids!
This surgery was just so much easier than others we’ve had. She only needed extra oxygen for about ten minutes. That’s a first. We usually have that thing going by her head for days. By the end of her stays I’m usually pretty light headed from leaning in close. She also had the usual sweaty head and low temp, but that was also minimal. She developed a cough, but it wasn’t bad enough like last time to require the breathing treatments. We even decided to put her in her own clothes and it made her look and feel even better!
I remember after her last surgery clutching the Pain Management brochure they gave us and reading it over and over, searching for ideas that would help. This time we were joking about her stricken look as she told us it wasn’t funny. “It’s not nice! I had surgery!” She pouted. But she was just doing so well we couldn’t help ourselves.
By dinner time Laelia had eaten a ton and wanted her Halloween candy. No nausea this time! She was being polite to the nurses but she was bored. So they let us go home! We were suppose to stay overnight, but we happily fled back to the Ronald McDonald House. Laelia was so happy to see her mound of Halloween candy again until I assured her that she couldn’t have any until it had been a full 24 hours after surgery. It had only been twelve hours!
Now I know surgery, and I’ve experienced it quite a few times, but this was nothing, this was EASY. They even cut into scars she already had so no new scars!
We visited Brysen, an AMCer who is also from California (although a good nine hour drive away from us), while we were there. He had a similar surgery to what Laelia had last year. He had lots of complications though, but seems to be doing better now. Still Laelia tried to say, “There there, it will be alright,” and make him feel better. He put up with her well. I have been loving his mom’s blog since I discovered it: http://www.mylifemydesire.blogspot.com/ (Scroll down to the bottom of the page if you want to turn off the music.)
We got back to the house and had some dinner. We ran into Jen and her family while we were there. Isabel (also an AMCer), Emma and Laelia colored pictures and Laelia even moved around in her wheelchair by herself. That caused some pain issues later, but I think the freedom was good for her. (I’m writing this post the next day and the girls are playing in the playground while I do.)
Laelia didn’t sleep much and she scared us with a low fever and some pain issues, but overall I think this went better than it could have. Her cough seems better this morning too. She just seems happier in her own bed with her own music and pillow.
Does this look like a kid who had surgery this morning???
Mama Bear was the scariest thing I could think of, especially if you’re a medical professional. And since we were trick or treating in a hospital this year I figured I was pretty intimidating.
I have better pictures than this one but I love the shark grins on these two.
We ran into Colette before we left and she gave Laelia a present filled with goodies to help her not be so bored during her long Philly stay. But the best thing of all was the great candy from Canada. I ate most of it.
Party at Shriners with cake!
It was so much fun for Laelia to go to each hospital floor and find the pictures of ghosts on the doors that indicated which ones were trick or treat doors. She would wheel in and yell, “Trick or Treat!” It was so cute. They loaded her up with candy. One of the perks of trick or treating in the hospital is that no one expects Laelia to be fully functioning. Also no one asks those questions that make us moms cringe: Can she grab the candy? Do her arms work? Why isn’t she walking? What happened to her? etc. Going to see a bunch of strangers for candy can lead to some interesting conversations, but the hospital staff were great! They even had her reach in to get her own candy and do it several times for practice! They were patient and talked with her and we had a great time! I kinda wish I could do Halloween this way every year and just isolate her from the world. But I’d be too afraid that would lead to becoming a hermit and maybe even homeschooling. Hehe.
And her prince came!
The cute couple out for a walk.
We ended the day watching Charlotte’s Web like this.
Oh and she is doing better with her walker! She falls down a lot though. Check it out!
August 31st, 2011 – Laelia took her first steps with knee immobilizers!
September 22nd – We got full leg braces (KAFOs)!
October 1st, 2011 — Laelia had her Walking Party!!!
Thanks so much to everyone who came to the walking party! We couldn’t have asked for a better group of people to celebrate with us. And thanks to everyone else who couldn’t be there but sent encouragement and/or duckies in the mail! We love you. You all made Saturday the best day ever! And it was so much fun!
I’m so thankful that we can do something nutty like send out an open party invitation to the Internet, and instead of slapping us, our friends and family are there to make it happen. Chelsea did the food (see below) which included duck-shaped cookies and a duck cake! Christina helped clean and pulled all the weeds out of our front yard. Lauren decorated the balloons, Adam drew some giant feet for the wall, and my dad helped by installing a ceiling fan so that the guests would not bake in our non-insulated oven living room.
Early Christmas present!
We had guests from Sacramento, Placerville, San Jose, Bakersfield, L.A. and Escondido, as well as many local friends and family! And five AMC’ers (besides Lali) showed up! And Laelia loved it! She’s talked of nothing else since! She even told me today that she knew the party was to celebrate her working hard at walking, and after her friends cheered for her it made her want to walk even more! Party win!
One of my favorite memories of the day was when Laelia walked across the finish line to get her cake! I had told her for the last three weeks that she would need to actually walk at her walking party. She didn’t really listen to me until I mentioned, “So you can get to the cake.”
But my favorite part of the day was the magical part when Laelia’s best friend, Ryan, walked! For the first time! Without assistance! In Laelia’s room! And more than one person later said, “Well, it is a walking party!”
So thanks everyone who helped us celebrate our beautiful arthrogryposis princess and her five quacks.
See y’all for the Running, Jumping and Rock Climbing Party!
So Laelia was taking a nap after a ROUGH (I’m talking crying, hitting and biting) day of PT last Thursday. I was sitting on the couch contemplating how I was a bad mother while eating ice cream when I hear Laelia call out, “I don’t want a nap!!!” Okay, she was completely out cold when I carried her limp form into the house just twenty or so minutes earlier. So I did was any good mother would do, I hid I went and checked on her. Well I eventually checked on her. By the time I got to her door she was quiet again. Thinking she had gone back to sleep (and that there was a God!) I went back into the living room to hang out with my dad and Christina. Well moments later I heard what sounded like a door opening. Sure enough that little Turkey was sitting in the hallway outside of her room with a big “I did it!” grin on her face.
And the world of napping changed forever.
Dad had installed the door apparatus while we were at OT/PT and hadn’t even shown her how to use it! She got right off her bed and figured it out on her own. Stinker.
So now I have a child on the move!
Ask and the door will be opened unto you. Her new door knob and chain!
I promise I have permission from Laelia to post this. This is what we’ve been working on in OT for the past three months. Really since her last occupational thearpist in the South MTU. So after much hard work I give you PANTS!!!
Here are a few videos we’ve taken in the last few weeks. Laelia is getting a lot stronger as you will see! She gets up on her knees and behind her caster cart all by herself to knee walk! She’s taking more steps with her knee immobilizers! She’s standing in her KAFOs (knee braces)! And she’s just super adorable in general.
(PS: These videos will not show up if you are signed up for the posts to be emailed to you. You must jump on Laelia’s actual website to view them. You can also try going directly to YouTube to view them, especially if you are using your phone. My user name on YouTube is recordsky. Enjoy!)
This girl only has six months to be adopted! If she's not adopted she'll either be thrown into an adult mental institution (even though she does not have a cognitive disability) or be thrown to the streets. Please help spread the word and let's find her parents!
So I’m thrilled Laelia was willing to even stand up with those wobbly things. I think falling practice in PT and doing the parallel bars has really helped her overcome her fear. I went online that night after we got home and ordered her some crutches of her own. (I got some good advice to not wait on insurance like we have been.) They should arrive Thursday! I’m so excited! Early Christmas presents! And Laelia is excited too! She doesn’t treat walking like other physical therapy excercises, but revels in the independence. Her doctor (van Bosse) commented in an email after seeing her YouTube videos, “For her, learning to walk isn’t a chore, it’s a passion.”
