My pretty girl.

Doctors told us ugly things.

Then we met this guy.

And started doing lots more PT.

And OT!

And proved them wrong.

Now we’re leaving this Sunday to fly to Philadelphia for knee surgery on February 1st.

Which means no more knee standing for a while.

And pretty girl goes back into casts.

And we’ll see lots of this face.

But in several months when all is said and done she’ll be able to do this:

(Photo credit.)

And *maybe* this:

(Photo credit.)

And why the heck not:

(Photo credit.)

Well, okay she’ll be able to walk better and have straighter legs.

Did I mention we leave this Sunday?!?!!

We need this:

(Photo credit.)

(But I’m tempted to make that last picture someone sleeping with chocolate in one hand and heavy medication in the other. )

As a New Year’s exercise I decided to see how far we’d come in a year. Last January we had just had Laelia’s casts removed after the biggest surgery of her life. And her legs were in the correct position for the first time in her life. This was the surgery I’d heard about from two doctors (one in San Diego and one in Seattle) but they refused to do it for my daughter because to quote them both, “Let’s get her in the best position for sitting in her wheelchair.” (From now on I’m going to respond to that with, “Let’s get your face in the best position for smacking.”) So we flew to Philadelphia to the “AMC doctor” (Harold van Bosse) after many people referred us there. We got the surgery done, and it was successful in turning her legs the right direction. But going for our follow up appointment in January was a life-changer.

There were eight crazy things going on in our lives last year.

1. It was vital for Laelia to get more therapy to maximize the surgery results. Every time we went to Children’s hospital it was an $80 visit. Our insurance had changed so I lost my patient advocate/case manager. I started the months-long process of setting up California Children’s Services for free OT and PT through their medical therapy unit. This meant I had to cut ties to our expert OT and PT to do it as they would not allow her to see them at all if we got into the program. It took some paperwork and lots of hassle to prove Laelia had arthrogryposis even though one glance will tell you she does. I was told I did not qualify. Then another person said I did and to try again. I needed a doctor’s referral, but the nurse  said I was stealing therapy from other poor children who this program was set up for. I miserably asked for it anyway.

2. Laelia’s feet were swelling and it was so hard to deal with the painful shoes. We thought Laelia’s foot was broken. She didn’t sleep through the night. Eventually the shoes cut a hole in her foot and it got infected. She was on antibiotics and the ulcer was hideous.

3. I was suffering from debilitating dizzy spells. I went to several doctors, got an MRI and got my ears checked. Nothing. One vertigo attack (I’d call it a “spell” but that seems too mild) was so bad it sent me to the emergency room.

4. It became clear that I needed to stay home and do Laelia’s therapy full time if I wanted to get her walking. It was clear I would have to quit my job but we couldn’t afford to.

5. We were carrying Laelia up several flights of stairs to get to the front door of our apartment. (There were four sets of stairs from the parking lot down below, eight sets to reach the street above and our mailbox, and one long set of stairs to reach the bathroom once inside our apartment. This was not wheelchair friendly to say the least.) Between our parking lot and our front door was a gate. I would go prop it open with a rock, go back to the car to get my daughter, and carrying her with both my arms in a full lower body cast I would reach the gate to discover the manager had closed it and thrown the rock over the fence. He said he didn’t care why I was propping the gate open, propping it was against the rules. If I quit my job to stay home and do my daughter’s therapy we would not be able to afford to move outta here.

6. We were having major problems with discrimination at Head Start on Home Ave in San Diego where my daughter did preschool. Even though it was government funded and had services for special needs children, it was hard to work with the director. The teachers were wonderful, but the director was not. They kicked my daughter out of school after she had surgery. The director said it was too much on her staff and complained that Laelia came back in a wheelchair and was sore. She complained my daughter could not walk and was hard on them. She finally put her hand on her hip, cocked her head and said to me, “Just tell me what you expect from us? What do you want us to do for you?” I had not asked for anything at this point. It was an attack. I hated entering that building and was stressed out every time I picked my daughter up from school.

7. My daughter couldn’t walk.

8. We found a little boy on an adoption website who looked just like our daughter. We started advocating for him. We were far from being able to care for another child, but I hurt for his situation. For all the hardships that were going on (our lives felt like they were falling apart), they paled in comparison to what he was going through and what he faced.

~

Step into the New Year!

~

1. After a couple months we got CCS services set up. We have seen them twice a week for the last year. It’s free. We qualified for their MTU (medical therapy unit) based solely on Laelia’s diagnosis. (Which is why it had to be officially verified which took forever.) CCS also has other programs and services for low income children which we were not asking for. This explains why I was told we did not qualify and was harassed about stealing services from poor children. Despite the hardships to get into the MTU, it’s been a great experience and Laelia has THRIVED!

2. Laelia got used to her shoes. Her feet are beautiful and straight. You can still see the faint red circle of where her ulcer was, but it’s pain free. She started wearing KAFOs too and tolerates them. Every now and again she’ll have foot pain issues, but they’re nothing major.

3. I had one vertigo spell during Laelia’s November pin removal surgery and it surprised me because I had not had one in months! I haven’t felt one since.

4. My company gave me a work from home position. I have a routine where I do all of Laelia’s therapies at home and go to all her school/community meetings around my work schedule.

5. A lot of miracles worked out and we moved into our new home last April. A missionary team helped scrub it out. Volunteers from a local church put in a wheelchair ramp. My dad built a shower and installed a light switch and door mechanism that Laelia can use herself. We furnished the entire place for under $800 with used stuff and hand-me-downs. It’s huge and it’s beautiful. It’s home.

6. Laelia was the last special needs student that darn school ever saw. The special needs program pulled out of there because, well, we all know why. We moved Laelia to the Head Start program off Balboa Ave. It’s been WONDERFUL.

7. My daughter now walks without a walker or crutches. She walks. Our jaws just dropped when she took her first tiny shuffle steps in August. Then a couple months later she had a walking party to celebrate. Then a couple months after that she turned away from me and walked off without a walker or crutches. My child walks.

8. He was our son. We’re adopting him. But without the top seven miracles working out we would not be in a position to rescue him.

Wow, what God has done for us in one year is amazing. It’s incredible. And it’s a ton. And it’s exciting because I get to see a bit of what had to work out, all the things that had to get better, for us to bring another child with arthrogryposis home. The pokes were painful, but the needlework is beautiful.

Do you believe this?!! I cannot believe this!

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

(Sorry for all the crying in that second video. )

Hehe, she walked right into the kitchen. Then I said, “What do you want to do in here?” And she said, “Bake a cake.”

So we did!

She walked all over the kitchen!

She practically made the entire cake herself! (It’s crunchy…)

Laelia got cake mix and frosting as a present from church this morning!

The cake came like that. *do de do*

Celebrating tonight!!!

Many of you know that our next surgery is going to be on Laelia’s knees. Well now it looks like we are officially scheduled for it, and it will happen earlier than we first anticipated. It’s now February 1st with a follow up in early March.

So if you missed it: Knee surgery is FEBRUARY 1st! Yeah I know! We pack up to leave just a few weeks after Christmas! (Just breathe.)

This surgery is going to be much harder than her last one (which was cake). I want to explain it clearly so you all know what’s coming. I’m even open to questions. Just from writing this post I thought of a few myself and have emailed Laelia’s doctor.

But first, why this surgery? Laelia was born with arthrogryposis (joint contractures making her joints stuck). Her knees came out of the womb in flextion (meaning bent, opposite of extension, meaning straight) and bloody from rubbing against my internal organs for months of my pregnancy. We’ve stretched them for four years, casted them and put them in stretching KAFOs. We did a pretty good job too. She was born so bent that her feet touched her thighs and now she’s pretty straight. If her legs had stayed as bent as they were without all our intervention we would have put Laelia in external fixators. (And I know families who have done extensive therapy on the knees and still had to do that option.) (And yes that link for external fixators is just a Google search. ) But because she’s now at less than 40 degrees of flextion in both knees (closer to 25 actually!), she instead will get (I don’t yet know how many) releases and then two eight plates inserted for each knee. These plates will stay in and encourage her legs to grow straight over time. It’s a process called “guided growth,” and it’s shown specifically to help kids with neuromuscular conditions like Laelia’s arthrogryposis.

The plates are drilled into the bone to be removed at a later date. We just got her hip pins out and now she gets more hardware in her bones! Yippie hurray (sarcasm).

The surgery is five hours long. She’ll be in full casts for a month followed by full leg braces to be worn 24/7 for a few weeks after that. There will be hard daily therapy in there too. That’s about six weeks of HARD (“hard” being a noun here). Six weeks of struggle and adjustment. She’ll be out of school for over half of that. Around mid March or early April she should be pain/discomfort free depending on the braces.

This is the surgery she was going to have around her next (fifth) birthday in October. Because it’s now in February this most likely means she will not have a surgery next year on or around her birthday for the first time in her life! She can actually age without consequence this next year!

With another surgery looming and the last one so fresh in our child’s mind we’ve had a few long conversations about surgery. It is always amazing to me to hear Laelia’s own perspective on something. For example I know she hates having her blood pressure taken. She says, “I don’t like when the cuff hugs my arm.” So every time they get the darn blood pressure cuff out (which is a stinkin’ lot after surgery!) she starts to cry and then she requires I hold her hand. Well she started talking about the time they took her blood pressure twice. I remember this–I was there, but my version of it is so different it’s funny. A nurse came in and wanted Laelia’s insurance card so she could go pick up our medicine for us (which was really sweet of her). I let go of Laelia’s hand in the confusion and didn’t realize that the cuff had not worked and they had to do it again. In the time it took me to walk to my purse and fish around for the card, they had already taken her blood pressure again. Laelia was fine and I wouldn’t have known it happened except for the nurse told me. Since blood pressure cuffs don’t terrify *me* and since it was already over and she was fine I assumed it was no big deal. But even though it was pain free and I was two feet away, Laelia tells a story of triumphant bravery in the face of extreme torture all alone and abandoned. It’s pretty adorable when her eyes light up and she says, “And Mommy goed away! And they did it again! Again! And the cuff was lower on my arm. And I was a big brave girl! And I was all by myself. And Mommy didn’t hold my hand!” I couldn’t help but squeeze and kiss her over and over as she told her story. Mama’s big brave girl got ice cream.

Well we don’t bring up surgery with our daughter for fun, but because I want Laelia to have a voice in decisions about herself. Of course I always hope her decisions agree with mine and are therefore the “right” decisions. But after Laelia voiced her preference loud and clear we have decided not to give her sleepy juice for her next surgery. They give this to children (orally) to calm them down before the anesthesiologist carries them away from their parents. It makes them loopy and giggly and fearless. Sometimes I joke that it’s just pediatric whiskey. But without it Laelia may be terrified going back for surgery without me. But giving her a choice in this matter may also empower her to feel in control and get through recovery better. The sleepy juice is not necessary or mandatory, but just a good idea. But Laelia doesn’t take medicine well and it’s often forced down her throat. So Laelia asked me in a very mature way not to have to do it again. She explained how brave she is now after the blood pressure ordeal. I’ve explained the consequences of this choice, but she’s unwavering. It makes me very nervous.

Plus I’ll miss that little drunkard!

I have this list of things I would love if people prayed for regarding Laelia’s next surgery.

1. That Mommy can keep it together. We just did surgery (whine). Now we’re looking at two more trips to Philly and a hard surgery before our timeline. Ugggggggggggggggggh. She’s just now taking regular baths after her last surgery! She’s still in bandages! Don’t I get some sort of tropical vacation between surgeries? I remember that in the Mommy handbook somewhere…

2. That Laelia is once again first up for surgery that day instead of waiting and freaking out all day. (It all depends on the ages of the other children getting surgery that day. If Laelia is the youngest she’ll go first. If not then she may freak out all afternoon.)

3. That she can remain calm without her sleepy juice while carried through the double doors into surgery.

4. Pain management. Oh please oh please. And on a personal note for my marriage during pain difficulties. Laelia’s pain has a way of tearing at her parents’ hearts and making emotions raw. I think Charles would claw out his own eyes rather than let his daughter feel pain, even if it’s necessary and part of her therapy routine.

5. Casts–swelling, itching, painful, heavy, skin breakdown, fear of them slipping, pulling her legs, etc. A month of casts, followed by…

6. Leg braces worn 24/7 for weeks. This may be harder than casts, and I know she’ll beg us to remove them constantly. This is when life will get really hard. Also we live 3,000 miles away from the people making and adjusting the braces. So I hope they are done correctly the first time. And that will be a first and is unlikely.

7. Rest.

8. Peace. She’ll be scared.

9. Travel mercies. It’s two or three airplanes one way, and takes all day. Flying with a post-op child on pain meds is the worst.

10. Travel expenses. (Surgery itself will be covered by Shriners.)

11. And lastly, although it should be more important but it’s against my policy of living day to day, I ask that this surgery be successful. That her future walking is helped by this surgery. We’ve had a couple unnecessary surgeries before finding this surgeon that I’m still upset about. But I trust this guy. But just because it’s the best surgery from the best surgeon doesn’t guarantee success. I hope this helps her one day walk easily and without assistance. Although I realize that may never happen. I just pray it is the best for her.

Thanks so much!

Sleeping Beauty is out of surgery!

(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???

We won!

Isn’t it beautiful?

So yellow and pretty!

I started squealing when I saw it rounding the corner.

“IT’S THE BUS!!!”

Neighbors must think I’m nuts.

So I have to say that starting a war with the school system is like banging your head against a wall over and over and over adn veovl anleiafl kaslierjaoj. Yeah like that. Sometimes you just get a headache. But this time we won! We got our school bus! And, yes, my daughter takes up two seats on the bus: one for her gait trainer and one for herself. Guess what percentage of seats that is. Give up? Two freakin’ thirds. That’s right, the two seats they didn’t want her to take up were finally wasted on her. She arrived home in the bus with ONE OTHER CHILD. *bang bang bang*

Apparently she tells me there were a whopping TWO other children on the bus in the morning.

So, UGH. I mean YAY! But also UGH. I was hoping I could fights some righteous battle that would usher in a smoother road for other parents in my situation and make everyone involved see the light of day. But in reality, in the San Diego Unified School District’s reality, you just fight every time they tell you no. Then you wait for almost two weeks while you sacrifice your work hours and sanity until they realize that you won’t just disappear. Well, according to the bus guy, parents do just disappear. It happens. They don’t want to fight. Or they feel they can’t without losing services or being treated badly. And I don’t blame them. I know of one other family who were denied bus service so they drive their kid to school everyday. They know it’s not right (it’s illegal), but they do it because they love the school and are thankful for it. And we are too. We love Head Start, the program and the people in our school, and we are so thankful for it. But I still fight these battles. Because I love pain. Bring it.

And why is information sharing so ridiculously hard for SDUSD?  I just recently learned that “Fred” was really “Willie.” So I took out the references to Fred in the last two blog posts and changed them to Willie. My daughter was even calling him Fred! How did we get Fred’s business card??? Anyway, we got the royal run-around and ended up speaking to five people total in the transportation department. Even when I finally reached the main guy who made decisions, HE EVEN TRIED TO HAND ME OFF TO SOMEONE!

And let me just say that we would not have even gotten as far as we did without our SEEC coordinator, Sue. She ended up calling everyone I did, multiple times. And she at one point yelled, “No, we need to solve this now! Do you want the mom to lose her job? Do you want to drag this out?!” Or something along those lines. She showed up at our front door at 7:00 a.m. with three other professionals on Wednesday to spend 40 minutes figuring out what bus Laelia would be on and how the bus driver would work things out.

I’m so glad it finally worked out. But I’ll admit it, I’m mad.

But Laelia is so happy. She’s riding the bus with her friends. She feels like a legitimate part of the school system. She feels like she belongs. And we all love her bus drivers. But as for the “system”…

Screw you bus people.

Laelia can now knee walk!!! She took her first steps (on her knees) on 8/15/11!!!

So amazing!!!

I had doctors tell me when she was born that she would never walk. We fired them!

Now we fly to Philadelphia for the best doctor: Dr. van Bosse!!!

Laelia can knee walk!!!

They said NEVER! Ooooooooooh!! They gave up on a baby!! Grrrrrrrr! She’s going to dance on their desks one day. DANCE I SAY!

This demands a celebration so we’re going to have a party! Details pending. Everyone’s invited!

Here are four videos because I went a bit video crazy. (I’m crying in the background for some of these. Please ignore. :’))

Eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!

Laelia likes to walk!

Laelia goes boom.

We took this one for Daddy.

Laelia sets a goal and then walks towards it! Love this!!!

So sometimes my daughter just amazes me. Just knocks me back! Two weeks ago it was while driving home from physical and occupational therapy. I told her that she earned three animal crackers for her good behavior. (Three because she’s three years old.) She said she earned five. (Five because her imaginary friend is five and he was good too.) We went back and forth a bit–three, five, three, five–and finally Laelia says, “How about three AND five! Then I get eight!” And I said, “No, when Mama says three… wait, did you just do math?!” The way I said it must have been funny because Laelia fell into a fit of giggles. And even though I was driving on the freeway at the time, I just had to call my husband at work to tell him.

But smarts aside (because I could go on and on), Laelia’s physical abilities are really taking off too! On Thursday (August 4th) I had the hardest day. It consisted of getting up at 5:00 a.m. to go to work, getting off work and picking Laelia up from school, doing occupational therapy with Karly, then doing physical therapy with Michele, then driving to drop off a prescription for KAFOs at Johnson Orthopedic (that I had to get redone by a California doctor since my Philadelphia doctor had originally done the script), then getting an appointment with Larry Johnson for brace measuring and discussion (casting for the brace is waiting on insurance), then racing to my doctor’s office for my lab work before they closed, then getting home and putting Laelia down for a nap and then waking her up in the middle of said nap in time for our National Seating and Mobility rep to show up. He measured Laelia for her Kid Walk in our kitchen while she cried for sleep the whole time! *whew*

I was cuddling Little Screamers on the couch when my husband got home and asked, all excited, “Where is it?!”

“Where is what?” My brain was back two or three medical appointments ago and then it hit me: WE HAVE A KID WALK!

Ooooooooooooh Ahhhhhhhhhhhh

If you were wondering what Laelia was using to get around at Penny’s party (see pictures below), it was a Kid Walk! We have wanted a Kid Walk for a long time now. A lot of our friends helped us research it too. The problem was that it was $3,000. But our former physical therapist started the process of getting one approved through insurance while we were still going to the south MTU (medical therapy unit). It went like this: CCS –> Laelia’s pediatrician –> Insurance –> National Seating –> Laelia! And each step took begging, pleading, demanding and holding someone’s hand as they did their job. Or maybe I’m exaggerating. It just took a long time. But, boy! It was worth it!

The reason Laelia is adapting well to the Kid Walk is because she’s had a wheelchair for a month now. And how we got the wheelchair was a total blessing! (Stop me if you’ve heard this one.) At the beginning of August we rented a wheelchair for our trip to Kansas City. It was $30 for the whole week. Laelia loved it and it gave her so much independence!  But when the wheelchair rental guy didn’t show up to pick it up, and it had been over our week, I started to worry we’d be charged more. So I was texting and calling him daily to figure out a time for him to take the darn thing back. That Sunday we took the chair to church since we still had it. A lady commented on how well Lali maneuvered in it, and I said, “Yeah I wish we could keep it.” The lady responded, “I’ll pray specifically about this.” (And I was a little surprised by this response. I know we were at church, but most people would have just offered some sympathy!) Three hours later I was still texting the rental guy, but he couldn’t get it that day either. Finally I just asked, “How much would it cost to buy it off you and save you the trip down to San Diego?” I got a reply really fast, “$100 and it’s yours.” That was the cost of renting it for just a month! Now it’s ours forever! And Laelia has been Little Miss Independent ever since! I want to find that church lady and ask her to pray for a million dollars next.

And I know what you’re thinking: ‘But isn’t the Kid Walk just a wheelchair?’ A Kid Walk is actually a gait trainer; meaning the child is suspended in a seat, not standing on her legs like in a walker, and not sitting in a seat like in a wheelchair. It’s something in between. Her feet are on the ground and she can use them to propel her forward. After having Laelia’s wheelchair for so long, the Kid Walk wheels were a breeze for her to master. In fact we had to keep reminding her to use her feet and not her hands! But she’s doing great! And she’s upright!

We took the kid and the Kid Walk to Target for a couple hours so she could practice running into the aisles walking. Two older ladies actually thought this was one of those child leashes. It was something about the way I was holding the handle bar in the back. Laelia has a leg difference (bone length and contractures make one leg two centimeters or so longer than the other) so if I’m not holding the handle then she veers off to the left. One of the ladies actually dragged her friend back to see the child in the “harness and cage.” At first I thought she was joking, but the more I think back on it, I don’t think she was. She kept saying things like, “So this way the kid can’t get close enough to the aisles to grab stuff off them!” And, “That’s one way to keep your kid in check!” I can’t make this stuff up. Another lady started petting my daughter’s head and cooing. Laelia just said, “You’re a nice friend, but I’m just walking.” Later she told me, “That friend who was nice was walking just like me.” She said it in a confused tone of voice, like, So why was she so weird about it?!

We’re going to get a wedge attached to Laelia’s shoe next week that may help her walk straighter. That way I don’t have to hold the handle to her child-cage.

Maybe a psychologist could explain away this feeling I’m having, but it’s a great feeling. I mean, I have a child who is upright! I left her in Sunday School last week standing at a play table with other children! She stood at the little play kitchen in the corner of the room too! She “ran” into the road when I was struggling with some bags last week and I was terrified! “Don’t you know better than to run into the road?!” I asked, horrified. Then I realized that I had NEVER taught her NOT to run into the road. So after that I had a great time teaching my daughter to look both ways, not to run off without me, to stay where I can see her, to hold my hand when we’re in the street and to not run into strangers. I felt like a new parent–a parent of an ambulating child! I always wondered what this would feel like.

So here are some videos of Laelia walking in her Kid Walk. She’s getting better all the time and I’m sure I’ll post more videos.

Penny helping!

David helping!

Just feet!

Home again home again jiggidy jig! Let’s not go anywhere for a while, shall we? I have three suitcases with scattered contents migrating outward across my floor. Each has at least one scavenger cat all over it. My house could be the stage for a disaster movie.

Three weeks ago Laelia and I flew out to Kansas City for the AMC Convention. Well last week it was Daddy’s turn so he and Lali flew out to Philadelphia for a check up and x-ray appointment. (Did I mention that all of our flights were free? Besides one AMC clinic in Seattle, all of our medical travel since Laelia was born has been covered! Woot!) This is the first Philly trip I have not attended. I kept having to tell myself it was just a check up. And it was just a check up. And I did figure out how to micromanage the entire trip long distance. Hehe. But still. Leaving Laelia with her daddy is a terrifying experience for me. Not that he’s not super responsible and smart… he is, but he’s also a space cadet. Every other phone call went something like this.

Him: “We arrived safely in Philly! Now where are the directions to the Ronald McDonald House?”

Me: “Um, what’s the ONE thing I asked you to print out because we don’t have a printer?”

Him: “Directions.”

Me: “And didn’t I call you to remind you at work to do that before you came home?”

Him: “Yeah, but where are they?”

…

Or,

Him: “Well we got a ride to the grocery store because, besides other things, Laelia just really wanted some animal crackers and kept asking for them.”

Me: “She went through the entire giant bag of animal crackers I sent you with already?!!”

Him: “Oh this bag marked, ‘Snacks’? Yeah I see it now. Oh this would have been helpful on the plane. Whoa, look at all these animal crackers!”

…

Add to that the fact that I did all the packing, compiled all the medical questions, safety pinned all of Laelia’s outfits together because matching colors on little girls’ clothes confuses the poor man… well, *sigh* anyway.

So where was I? I was busy seeing my brand new nephew! So I flew up north to visit family in Placerville. I’m an aunt now! Yay me! And my sister and her husband are first time parents! So yay them too I guess.

I didn’t have much time, but I made myself busy by visiting family, losing money at the new casino down the road (that my dad won back because Christina is lucky and I’m not), taking a three hour walk and coming home with my pockets so full of rocks that I couldn’t clean them out in time to answer my buried cell phone, cleaning my sister’s bathrooms and floors, making and eating ham sandwiches, ham with corn, ham with ham, more ham and ham with ham on ham, losing to my sister at Doctor Mario… a lot (you haven’t heard my excuses yet!) and playing and cuddling little Levi. Here are some pictures courtesy of my sister since my camera went to camera heaven.

Levi with his favorite aunt: ME!!!!

Teaching Levi to make faces.

And here’s the fish face!

Note the family resemblance?

Here’s Laelia at Levi’s age. Parents should keep their children’s cheeks away from me, apparently.

And while I was busy back home, Laelia was in Philly!

Laelia and Ronald and Ryan

Of course they ran into Laelia’s future husband, Ryan. He practically stalks her, you know. Daddy and Lali actually stayed at the Ronald McDonald House in Camden, New Jersey this time and just commuted to Philly for their appointment. Their room was Harry Potter-themed–from broomsticks on the walls, Harry Potter books on the shelves and posters or life-size cutouts of the characters everywhere. Each wall was painted a different Hogwarts color with a corresponding banner: Gryffindor, Slytherin, Ravenclaw or Hufflepuff. It was awesome. Actually every room at Camden’s RMDH is themed. The room they almost stayed in was 70s tie-dyed themed. There’s even a Sponge Bob room!

While in New Jersey, Kiersten and Ryan took them to eat real pizza. Jersey style!

“Now that I’ve had my Jersey pizza, I want my Snooki tan!”

They saw the doctors and therapists on Friday for Dr. van Bosse’s AMC clinic. Laelia got her x-rays (lookin’ good!), some extra padding for her shoes and some magic pony toys (that my cats are always trying to swallow and kill themselves with). The physical therapist said to do more tummy time (like a baby?), hydrotherapy (I’ve called them but haven’t heard back yet), hippotherapy (called them and heard back… $25 a session?!!!??!!) and more physical therapy everyday. I’m not sure how we’re going to fit this all in. It’s a lot. A LOT. Let’s just say I’m going to look for stay-at-home jobs now.

And we’re adding new hip stretches to the daily routine. Because we didn’t have enough stretches. Yay.  o_O

Then there’s the stressful paperwork dramas that must now take place. We are suppose to get KAFOs but we have to get the script from a local doc (Philly docs don’t count in California) and then send that to insurance, and then to the orthopedist, so it will take months I’m sure. And we’re suppose to start using her Kid Walk, but I can’t figure out what happened between steps 5 and 6 (better known as between the insurance auth step and the manufacturer step). We also got the go-ahead to do E-Stim, although I have no idea how to find out anything about that… and it’s low on my list.

We also have a surgery date of November 8th. They want us to fly to Philly a week or two before that to do intense, daily out-patient physical therapy. After those weeks of hard work and the concluding surgery we’ll have a better idea of what to try next.

And since lots of people have asked about the surgery, let me back up. Last November Laelia had her bones, between the hips and femurs, cut through and rotated and then screwed back together like this:

So these screws or pins or clamps (I’ve heard them referred to as all three) need to come out. Then we’ll have to start over with PT. Ugh. Well in a way she’ll be learning to do everything she does now only with her actual hardware and not the metal hardware we added. Osteoporosis is a major concern for AMC’ers, so the more weight we can put through those legs now, the better. We already have her on a high protein and calcium diet which I think is helping. Or at least it’s SOMETHING. She eats eggs and peanut butter sandwiches and protein (“chocolate milk”) shakes for her muscles, and she eats yogurt and supplements (gummy vits) and other things with calcium in them for her bones. I know kids who have bones break just from the lack of weight bearing just from the amyoplasia (which she has) so I’m hopeful we’ll escape that fate.

In other news we started physical therapy with new therapists today (Tuesday). The bad news was that we were (read: I was) so desperate for a camera that we tried to get one for cheapo off Craigslist and ended up driving to Spring Valley to pick it up. And that’s where our car stayed. Bad alternator. Just great. So we had to bum a ride to PT and then wait over an hour for a ride home. But I like our therapists and think we’re doing the right thing.

It’s so weird getting new therapists. Every year and every new therapist, we get a new evaluation. And my brain knows that these exercises are to test where Laelia is now, and not a test that she’s failing. But still my heart has not wrapped around the idea that we’re not failing when, you know, we fail. So instead of hearing what the therapist actually says, “Looks like she’s a little weak here, let’s make it a goal this year to work on it!” I hear, ”Well Laelia FAILED the physical test. No A+ for her. BAD PARENTING!” Okay not really, but I have to make an effort to change my thought process here. After the tests Laelia looks at me waiting to see my reactions (because she’s hella smart) and I have to mean it when I tell her how good she did. She lights up like the Fourth of July when she hears she’s done well. A+ for Laelia!

Well we just got back from picking up the dead car in Spring Valley. We now also have a camera we got on the cheap! Don’t know if it works yet. It came without batteries or memory cards or anything. *crosses fingers*

There’s lots more to say but I’m tired. Charley keeps telling me cute Laelia stories from his trip to Philly, but I told him he’d have to blog about it himself. I’m going to eat my weight in food since I have to fast tomorrow (feel sorry for my coworkers) for a blood test.

Ooh left over pasta! Bye!

Wanna know how I got up here? Watch the videos below and see!

I’m just going to post them all. You asked for it!

Whew! What a work out. I’m worn out.