We’re so tired all the time lately that I just broke down crying in front of a group of people I don’t know this morning. Thankfully they were wonderfully sympathetic. Laelia’s foot issue is worse. In fact I’ve decided to include some images of her foot that are disturbing so maybe you’ll want to hide the monitor from younger viewers before scrolling down. Her AFO (ankle foot orthotic, aka “special shoe”) on the right foot has caused a crater that just gushes blood, making it unwearable.

That spot was getting worse and worse, and we were trying everything we knew to keep the foot in the AFO (and keep it from re-clubbing). But nothing worked: not band-aids, “working” the straps, a cotton ball between the sore spot and strap, putting the strap as low as we could off the sore spot–nothing. So finally after the blood gyser last night, we gave up and left the darn AFO off her all night. It was the first full night’s sleep she’s had since January 7th. I wish I could say the same for us, but we were up worrying about bleeding issues, re-clubbing issues and dealing with guilt. With regular clubfeet we wouldn’t worry, but an arthrogryposis clubfoot likes to curl up very easily. They are the most stubborn feet! And we need that AFO to avoid surgery!

As you can see in the above pictures I put her back in her old AFO today that doesn’t do much for her and is too small, but it’s better than nothing. There’s a hard piece of plastic between her foot and the strap on the old shoe so it doesn’t hurt that area as much. We are going to try and meet with Laelia’s busy pediatrician tomorrow (Monday the 31st) so we can get a referral to an orthotics company ASAP and try and “fix” the AFO. Her AFOs were made in Philadelphia so it’s not like we can march over there and demand they fix them. (PS: I had found the old AFO in my unpacked bag I had taken to Philadelphia. I haven’t found the time to unpack in almost three weeks!)

In other news, CCS has not moved an inch on our PT appointments. They have just sat on our paperwork with their thumb up a delicate part of their anatomy. I’m sick of this. We are waiting for no reason! I would fight this tooth and nail and make a big stink if I knew how much longer it would take, but they won’t give me any idea! I would just hate to complain and then have them call me the next day saying they were done. But it’s getting ridiculous waiting for people to just stamp an approval on our case. We already know we qualify for their medical therapy program based solely on our diagnosis! So why has this been so hard? And it was suppose to have been rushed since she got out of casts three weeks ago!!! And she was suppose to have been getting physical therapy two times a week for the last three weeks! So frustrating!!!

Since CCS are punks, we have had to try and push our insurance to move faster. Our case manager, Gretchen, never returned my calls. Ever. Thanks Gretchen. But thankfully we got a new case manager through CPMG named Stacy. My husband likes to say, “The best thing about Stacy is that she answers the phone!”  But actually we like Stacy for more than just that. While I was down with a bad cold and sore throat, Charley took up my job of calling and bugging people. He reached Stacy and they spoke on the phone for over an hour! Incredible! She gave us ideas about how to work the system to get Laelia’s AFO fixed, and she seemed to understand how important this all was. Finally someone helpful! Prayer answered. Stacy even gave us our much needed PT authorization!  Then Charley immediately called Children’s Hospital who only has one scheduler person who doesn’t work Fridays!! Ugggggggh. So we finally have auth, but still not PT. Hopefully soon.

While Charley was on the phone with Stacy, Laelia was rubbing my foot to comfort me since I was miserably sick. She’s a total sweetheart and just cares so much for people! Then she started “reading” me stories. At one point she said, “Mama, I’ll read you a God story.” Then she grabbed my Bible off the coffee table and held it in front of her upside-down, opened to the middle, and began, ”Once upon a time there were three little pigs and a big bad wolf.”  Best Bible story ever!

Laelia is adorable. Even when she’s in pain she’s adorable. On Saturday we went to get our family picture professionally taken for the first time ever. I knew Laelia was in pain so I told her I had a present for her (small thing of bubbles) if she could last the outing with a good attitude. When she’s in pain the slightest thing can set her off. (I’m the same way.) So when she was playing with a picture sample and it got taken away she started to act up. But then immediately as if by magic she changed her tone and apologized to the people nearby. Right as they were praising my parenting she added, “Now where’s my present?”   

She was also a good girl during her first ever chiropractor appointment on Thursday! We’re trying to see if working her spine will allow her more range of motion or strong, more stable movements. The chiropractor loves her because she follows all his directions perfectly. She laid her head down on the table and took deep breathes as he pressed down on her lower back. I thought she’d throw a fit since he was a doctor and he was touching her, but I think his blue jeans and great voice (better than Ted Williams!) put her at ease. It looked relaxing! Charley and I found ourselves watching this happen while holding hands and grinning. I didn’t know my wiggle worm would enjoy that so much!  Because she was so great she got to pick the dinner of her choice. She chose Apple Jacks cereal dipped in ketchup. And that’s the last time she’ll ever get that deal.

Also, and this is exciting for me, we have a new rule in our home! The rule states that there will be no more watching TV or movies of any kind unless doing active weight bearing at the same time. (The rule does not apply to adults or Saturday mornings when adults want to sleep in. ) So far this rule is proving to be a great encouragement during physical therapy. Backyardigans and Blues Clues and KPBS shows are even more enjoyable when you’re earning them! Plus she doesn’t overdose on TV this way since she can’t watch much while weight bearing. But even simple weight bearing (like sitting on a ball with Mama holding her hips) counts, so she can last a whole show. It’s working really well!

Also we received a gift from our dear friends to pay for private PT out of pocket until CCS does the right thing. The same friends also put us in touch with a friend of theirs who is a PT, and that friend put us in touch with a closer PT who will most likely be doing the therapy soon. I’ll call her tomorrow. It has meant so much to me. I’m so blown away by people’s generosity.

Another example of generosity is that for Jewels for Jared, our friends and family bought bracelets to support baby Jared and had them sent to Laelia in her size! She has thirteen (!!!) $5 bracelets that you all gave her! She earns them during PT exercises. Thanks so much! Not only did you guys support Jared’s medical expenses, but you also supported Laelia’s physical therapy too! Bracelets are great motivation to finish a 30 second push up!

Okay we just put Laelia down for the night and it sounds like she’s sleeping. No screaming. I hope it lasts. We have to do Laelia’s foot stretches every hour during the day since her AFO is not doing the work for us. The stretches have gotten easier, not because she cries less, but more because we’re getting used to it. I’m relieved that my baby’s cries no longer kill a part of me, but at the same time I’m not thrilled about being callused in that way.

So much is still up in the air right now. Where we’ll be living, how she’ll go to preschool in pain, what to do with my job and how to deal with her right foot are just a few of the unknowns right now. We’re hanging in there though. Life with arthrogryposis is sometimes hard, but this girl has brought so much joy to our lives. I mean it. I wouldn’t mind having another one with the same condition. Charley hears this and thinks I’ve gone mad.

“I wanna stay up with Mommy and Daddy!”

Don’t try to take me up to bed!

Making party hats!

Wearing her party hat while singing really loudly.

Getting really sleepy. Charley couldn’t help but mess with her.

“Zzzzzzzzzzzzzzzzzzzz.” It’s like 8:30pm.

Happy New Year!

Any and all aspirations for mailing out real Christmas cards this year have been crushed by all these crazy (non-medical) complications since coming home from Laelia’s surgery. So here’s our official, online (sorry old people!) Christmas card. Enjoy!

Well, here we are at the end of 2010, scribbling down a last minute Christmas letter while waiting in line at the post office. LAELIA STOP RAMMING YOUR WHEELCHAIR INTO THAT!

Where was I? Oh yeah, the Christmas letter. So I found a lazy an easy format to follow to make this go faster more fun! It’s multiple choice time!

Dear:
1. Family
2. Friend(s)

(See how fun!)

Charles and I are still:

a. married.
b. speaking.
c. breathing.

For the most part, Charles is:

a. busily taking care of his girls.
b. still employed.
c. successfully dressing himself.

Alexis is:

a. baking cookies until she permanently smells like Grandma’s.
b. making fighting the system look sexy with her stress pimples and unwashed hair.
c. appreciating prescription medication.

Laelia is:

a. recovering from her third major lower body surgery (fourth surgery to date).
b. starting pregnancy rumors about her Mama. [Just for the record, Mama does NOT have "a baby in her tummy." Let me just squash the toddler pregnancy rumors while I'm at it. It's all wishful thinking on the part of my kidlet.]
c. demanding ice cream pizza or she’s going to run away with Blue (from Blues Clues) and become a princess fish. [What’s a princess fish? “It makes persons green.” Duh Mom.]

Looking ahead to 2011, we wish you:

a. a happy holidays!
b. a happy New Year!
c. sanity!!!

All our love to you,
Alexis, Charles and Laelia

All of the above multiple choice answers are true, unless they sounded ridiculous… like Alexis baking. We’ve had a busy year with three flights out of state for medical treatment or evaluation: one to Seattle and two to Philadelphia. (Charley really should have done something about that rash earlier. ) And Laelia is three years old now and universally in charge of who’s cool.

Laelia: “Daddy and me are the COOL kids!”
Mama: “What about you and me?”
Laelia thinks about it: “We’re the same old kids.” :-/

Our year has been full of surprises, but I’ll just share a few from this month. Like:

SURPRISE there did in fact exist an amazing surgery (or more accurately an amazing surgeon) to give us hope that our daughter would one day stand. And even though she will have been in casts more Christmases than she’s been out of casts it’s worth it. Because yesterday she stood!

SURPRISE we won a raffle on Jared’s Hope and got an iPod Touch!!!

SURPRISE Laelia’s wheelchair has no copay!

SURPRISE Laelia and Mama got complimentary flights from Midwest/Frontier’s Miracle Miles program to go back to Philadelphia on January 7th for cast removal!

SURPRISE Christmas is next week and there’s no way to send everyone a real Christmas card.

We’ve had our share of super bad surprises too, but who can remember that long ago… yesterday, last week, this morning. Pffff.

So let me wrap up this Christmas card by saying, our year was an adventure. And even thought I hope and pray that next year is half the adventure this year was, I’m so thankful for our friends and family (and bosses and community) who stuck by us and provided everything we needed (from prayer to babysitting to encouragement to advocacy to time off from work) to get by.

Thank you!

Merry Christmas!

Five screws make for bone blues. But a straighter position is our gift from a wonderful physician!

What’s better than getting lost on my way to a radiology appointment at Children’s Hospital?

A. Doing it without my cell phone.
B. Doing it on an empty stomach.
C. Finding the darn place, getting Miss Casts and her wheelchair to the correct department, waiting an hour then being denied x-rays because they don’t have my daughter’s date of birth and diagnosis written on the silly prescription!
D. All of the above!

The answer is D.

Two days later and we got the x-ray! Barbara in radiology made a few calls to Philly on our behalf and worked it out to have them fax over the missing information.

Our x-ray tech guy was super awesome and helpful. He was cool with my daughter (who is terrified of x-rays for whatever reason) screaming at him the ENTIRE time. After it was all over and the sobs subsided Laelia spent the next half hour telling me, “It’s fine Mama. There there Mama. It’s just a big camera. You’re fine now Mama.” !!! She gave her daddy the impression that she was the brave soul who comforted poor Mama through the entire process. 

Then after all that they couldn’t give us the darn x-ray and we had to fill out lots of paperwork in the Health Information department. (A department that is hidden on the hospital’s massive grounds and involves a shuttle car, magic shaman and braving a hedge maze to find… not to exaggerate.)

Then I was called on Monday (earlier than expected) to pick up the records. (After, you know, finding my shuttle, magic shaman, etc.) Making it my third trip to the hospital in a matter of days!

Of course HIPAA made sure the CD those x-rays were on was nearly impossible to share with our doctor. So I ended up having to take a picture of the computer screen to get them. And because of these delays we had to cancel Laelia’s physical therapy appointment since we didn’t know if she could weight bear since we couldn’t get her x-rays to her doctor!

But I’d do it all over again just for the feeling I got when we finally saw the picture.

Before (pre-surgery from October):

After surgery:

!!!

Lauren made the x-rays modest for me by adding a black box (without me even having to ask, THANKS LAUREN!) so I can post them publicly. They are too exciting not to share! Pretty much what you’re seeing in the before picture are bad hip contractures (due to arthrogryposis) making Laelia look a little bent like she’s leaning over. In the after picture, the bones have been cut and moved down past the darn contractures. There are screws/clamps keeping them in place which will be surgically removed next year. But look at what a difference! Her legs finally go together!!!And they’re so much straighter!!!!!!!!

I feel so blessed! This life is hard, but it sure has it’s pay offs. Thank you dear Father God for my daughter and her new legs!

The first 24 hours are the worst. If your child is getting this surgery and you can get through those hours, you will have gotten through the worst your child will ever go through. Surgery itself is cake compared to this.

She cried. And cried. She arched her back and grimaced. She would sweat profusely through her pillow case and sheets. She didn’t speak. She squeezed her eyes shut but couldn’t get respite through sleep. She cried. And moaned. And cried.

And we couldn’t do anything about it; just be there watching her in pain. And we couldn’t leave the room to use the bathroom without her startled cries and elevated heart rate (machine beeping at us) pulling us quickly back to her bedside. Sometimes she wanted me to hold her hand. Sometimes she hated to be touched. Sometimes she wanted a hand on her tummy. Sometimes she just wanted to scream in my face and look at me accusingly for not fixing her pain. 

Charley adds: “She was reduced from her super articulate three-year old self, to a tiny baby without the ability to communicate anything except need. She would cry something that sounded like, ‘I want I want I want I want…’ but without a way to finish that sentence. It was almost a full 24 hours before she learned, through the pain, to form a full sentence again. It was, ‘My legs hurt a lot.’”

I started to second guess my decision to have this surgery done. I kept thinking how much she has gone through, all to possibly one day stand or walk. This was too much; I was a terrible mom.

The incision site was above the cast line.

The casts were not a spica, but instead full leg casts connected by a bar. This is so she will have more mobility later, but for right now it’s just hard to move her. You cannot move the cast separately from the hip or twist her or lift one side or anything you need to do! It’s so hard, and I’m so intimidated to even touch her.

My husband broke down again somewhere in the first few hours. For some reason that made me stronger. Because if he was the strong one, then I would break down. I don’t know how any single parent goes through this.

Nurses, God bless them, were wonderful yet we wanted them to all go away. They had to check her vitals every 15 minutes. So every 15 minutes Laelia screamed her head off. But it was different than when she’s throwing a fit or when she’s got a boo-boo. She was downright scared. Her cries were desperate and hoarse as if she were being tortured. Laelia couldn’t stand having the blood pressure cuff on her arm. So I took it off. Then a nurse came in to put it back on, but not to take her blood pressure–just to leave it there. So I took it off. Laelia was scared of it and in a lot of pain so I asked it be kept off until they needed to use it. When I got the “it’s the hospital policy” line, I tried using her amyoplasia as an excuse. I said she was special and this hurt her. I lied through my teeth which is quite unlike me. (Also I forget that people have actually heard of her condition at this hospital.) The nurse wrapped it onto the bed rail and hit the top of it in frustration and left. She came back later with her superior who put it back on my daughter. I told them all that if they needed to take her blood pressure every 15 minutes they could darn well come in and do it themselves as opposed to leaving it on her arm to go off automatically and freak her out the whole time it was on. I was at my wit’s end and I made it clear that I would take it off as soon as they left the room anyway. I watched that cuff try to take the blood pressure of the bed rail more than once. It gave me a grim satisfaction.  

Lali refused to keep the oxygen in her nose, so the doctor put it on the top of her head unintentionally making those who tried to cuddle her light-headed. Despite being largely mute, she was very particular about her own care.

Laelia also sounded like she had a bad cold. She was congested due to some fluid in her lungs from intubation. And that meant she had to have breathing treatments done. Which she hated. A lot. And up until now things had been done to  her, so when she finally had the power over a part of her own care, she was darn well not going to participate. But when her breathing was affected by the junk in her chest we had to force the respiratory device into her mouth and tell her we wouldn’t take it out until she breathed into the device. It worked, but the last thing I wanted to do was force more hardship on this little soul.

The respiratory therapist gave Lali a gorgeous black-and-white stuffed tiger as a reward for doing her first treatment. Charley gave Mr. Tiger a voice from then on out, throughout our stay. Subsequent breathing treatments were done after a few bribes or threats of, God forbid, pausing one of her two billion viewings of Finding Nemo until she cooperated. (I’ve now seen that movie more than the animators themselves. But I’ve got to admit it was much preferred over half of what children’s programing had to offer. Dinosaur Train? Seriously?)

The next morning Laelia was still on IV meds, an epidural and a suppository. Finally she got some water and a couple bites of my breakfast pop tart (that she demanded) down so they switched her from the suppository to oral medication around lunch time. And Mama was the only one who could give it to her. So I had to squeeze her cheeks so hard it broke the capillaries in order to force one milliliter of medicine at a time through her teeth until she’d had five milliliters. During her second dose four hours later she choked and threw up all over me. Because the puke was on her IV, blankets and pillow case it meant that we had to move her to change those things out. And moving hurt her. She screamed in pain for half an hour straight after that. So finally after was seemed like hours, the doctor decided to up her epidural medication and add two somethings to her IV. About five minutes after that happened, she stopped crying and announced, “My lips are purple. And I am so very pretty.” And then she argued about the amount of strawberries the hospital had stocked. She was so very drunk off pain meds. But for the first time in too long we were able to just enjoy her.

Charley and I were so very tired. Every little stress seemed to be magnified. The cafeteria had hours they were open that never corresponded to hours we were available, we never had one dollar bills for the vending machines, my cell phone only held 50 texts (40 texts caused large delays receiving messages) which meant I was constantly deleting all of my important messages everyday to allow more to come through, the lack of sleep hurt us physically even with trips to RMD house, driving through the ghetto almost resulted in accidents or death of stupid pedestrians daily, and on top of these small issues, we felt personally responsible every time our daughter whimpered.

Many things are awful about surgery, but I think inability to sleep is the worst. Even when she was asleep she would cry. She would do a “crysleep” for ten minutes then wake up and cry out loud and then fall back to crysleep. The crysleep sounded like a snore only with her voice box making a high whine sound every time she exhaled while she grimaced. It was very disconcerting.

Even in a deeper sleep than crysleep her heart rate was 140! That’s the same as I have when jogging!

Sleeping was impossible with all the nurse interruptions, as unobtrusive as they tried to be. Even the guy who came in to empty the trash caused her fear and crying. We wished we could have had a heads up and just moved the darn trash can to outside the room before he came in!  Another doctor came in at one point to look for something he’d left in the room earlier causing panic. Someone came in to lay a tray of food down. (I wish they could dress up in a different costume so she’d know it was food coming and not someone coming to check her wounds. Maybe if they dressed up like giant chickens? Shriners you can use that one. ) One nurse, Wanda, came in often to add meds to her IV or switch out the bag. Laelia screamed every time until I told her that Wanda was coming to “play with her machine” and she wouldn’t be touching Lali at all. That line worked better than, “She’s coming to add medicine to your IV.” Laelia finally was quiet every time Wanda came in after that.

There were moments of less pain. Not really pain-free moments, but starting Wednesday afternoon we had times when we could talk to her and she would talk back. We were encouraged by the pain management brochure we were given to talk with her about happy memories and future trips. So of course we talked about Disneyland. We sang the songs to her favorite rides like It’s a Small World and the couple of songs we knew from the Tiki Room.

We also read her lots of books. I was getting encouraged when she could sit through a whole book even if she was crying the whole time. She wanted me to read to her, and would grab my hand if I took the book away thinking she was in too much pain. She would moan while I read, but I went through the fifteen books of hers we brought with us over and over again.

The second night was also hard. We decided to send me (Alexis) to the RMD house to sleep through my worry for a few hours, then I would come back and switch off with Charley. I broke down in the elevator before reaching my room. And while I was telling myself she was fine, she wasn’t. Charley was with her the second night, so I’ll let him tell this story:

“The second night Laelia was given Valium to prevent muscle spasms. It was supposed to be the first of several regular doses, but she started reacting to it almost immediately. She wanted her blanket off, which I accommodated; then she wanted her gown off, which I helped her unsnap and remove. Then she just started clawing at her IV and the sensors on her chest and finger. She wanted them off, she wanted everything off, and she wanted to get out of there. I called the nurse and doctor in, and they confirmed that Valium could cause this kind of disorientation. The nurse helped me get her into my lap–it was the first time either of us had held her since the surgery–and after about 30 minutes of singing and talking about Disneyland rides, she calmed down. Then the nurse gave Laelie her first dose of Tylenol with Codeine, which helped knock her out and give her 3-4 hours of continuous sleep. During her whole stay in the hospital, it was the most sleep she ever got at one time.”

So I came back from the Ronald McDonald house Thursday morning to find out that my daughter had a Valium trip that make her want to take off her own skin while my husband held her and cried into her hair. Laelia looked miserable and so did Charley so I kicked Charley off to the house to sleep off his trauma while I took the next shift. He had to leave through Laelia’s painful cries which was hard. But she settled down after a bit. 

During this time I got a text from Ryan’s mom. (Back story: This is the family we went to Seattle Children’s hospital with to get our amyoplasia diagnosis. The same place that gave us no orthopedic hope for my daughter. Which directly led to our AMC support group contradicting them and sharing about Shriners in Philly which ultimately lead to this very treatment course we are pursuing.) Ryan was scheduled to have the exact same surgery that Lali just had that morning. (They worked it out so we could have the same surgery week together.) Well Ryan had just flown all the way to Philly from California with both parents in tow only to find out that his surgery was cancelled due to slight congestion. Which sucked.

By Thursday afternoon before 2:00pm Laelia’s epidural and catheter were removed (not as traumatic as I would have expected, just a quick pull for both) and we were allowed to go back to our neglected fifth floor room. More magical medicine was given to Laelia so she slept the whole way there even when her bed got bumped pretty hard into the door. That evening after two more viewings of Finding Nemo it was becoming obvious that Laelia was in more discomfort than usual without the epidural helping. The nurse brought some Tylenol with Codeine and I forced it once again down my daughter’s throat through her teeth. It took about twenty minutes to kick in. Once it started working, it worked well. There was no doubt when it kicked in.

Laelia was doing better, inviting all the nurses to Disneyland with her when we got home and generally saying demanding things like, “I wanna go to Disneyland now! DADDY DON’T LAUGH!” But I was sure there was no way we were making our flight the next day. She still had such a long recovery ahead of her. It still hurt to touch or move her. And she hadn’t pooped in a week! Tomorrow I had to figure out where we would stay, how to change our flights and how to avoid blowing our trip budget to smithereens.

Needless to say I was shocked in the morning when our doctor came in and we were discharged that afternoon! (More to come in the next blog, Love is Kind.)

“More grapes please!”

Lali with cheeks full of grapes!

“Grandma give me ice cream!”

Look at how well she uses her hands!!!

Lali and Christopher on an ice cream date!

Dave dragged Lali around the room as she squeeled with delight!

Buddies! Lali and her Chelsea.

Michelle can run but she can’t hide! Get her Lali!!!

Lali wanted to drum WITH Jared USING licorice sticks ON Lauren’s feet. Perfectly reasonable request, right?

Grandma Deb says that her nails need to match her walker, so voila!

Funny Lali announcement: “Mama! I share the smoothie!”

Me: (looking at computer and not at child) “Sharing is very good. Good girl.”

Lali: “I share with Mama’s cell phone!”

:-/

Other Funny Lali Story:

Lali says, “Mama where’s my sister?”

Me: “You don’t have a sister, honey.”

Lali: “Why not? Where me sister go?”

Me: “It’s, ‘Where did MY sister go?’… Um, and you don’t have one.”

Lali: “Can I… want a sister, and have a brother? Pleeeeeeeeeease?”

Me: (kinda nervous now) “Do you want a brother or sister?”

Lali: (exasperated) “Yes!!!”

Me: “Um… honey, we can’t have a brother or sister right now…”

Lali: “Megan give to me.”

Me: “What? Megan isn’t related to you, sweetie.”

Lali: (falls over and looks up at me) “Please read to me brother and sister bear!”

Me: “A book about a brother and a sister?.. … … OH! Brother and Sister Bear! The Berenstain Bears!” (totally relieved)

Last funny Lali story:

Lali: “I want cake.”

Me: “Becky is making a cake for Uncle Aduma’s birthday. You can have some of that!”

Lali: “I want my birthday. I want my cake for MY birthday.”

Me: “Well in October you can have a cake…”

Lali: (all excited) “I want sprinkles! I want yellow! I want chocolate! I want numbers! I want forks! I want more chocolate cake for me! I want…” (it goes on for a while…)

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.