Laelia Sky Wesley

Laelia playing in her new shoes after getting used to them.

I love my shoes!

 This is before we had real socks yet.

Day one. Look how thrilled she is! haha

Thank you for my shoes! Thank you to everyone who helped pay the out-of-pocket costs for these wonderful shoes! Right when we were starting to stress about our insurance saying we couldn’t have them is when we received a gift to pay the $300 deductible (what I called the “downpayment”), another for the shoes themselves and yet another for miscellanious costs (adjustments, socks, co-pays to get her feet looked at, etc.). My family and friends came through and all said, “Go get your baby the shoes she needs!” It was wonderful! We are so blessed beyond words!

These shoes or AFOs (ankle foot orthosis) are for the purpose of holding Lali’s club feet in place before her first major surgery. Her club feet are due to arthrogryposis, so they are far from a simple case. Arthrogryposis makes those little feet want to curl back up and not respond well to treatment. In fact these last few days without a Dennis-Brown bar, her ankles have reverted! Accc! We’re getting the bar on Monday!

Well these new shoes are much lighter and made better than the industrial crap (new orthotic guy’s terminology, not mine :)) we had before.

My only contention with these shoes is that they work too well. It has been hard for her to get into them because they hold her foot so much better and that can be a trifle painful. Novel idea to have orthopedic shoes that work, right! Good heavens. I’m still mad at Scope. :-/ 

Our first real socks EVER! 

A treat for me was not only did I get to pick out the color and heart pattern of these pretty shoes, I also got to buy my daughter socks for the very first time in her whole life! She may have had something when she was born to keep her feet warm, but they were never her size because her feet were severely deformed. Then when she was three weeks old she went into casts. But these little bobbysocks are adorable and cheaply found at Target. They are girlie colors and go well with her little shoes. They are even her size and the heal is in the right place (which I couldn’t say about the industrial socks with no heal that Scope gave us for the KAFOs). These socks are not special, just normal girlie socks. I LOVE IT! I LOVE BUYING SOCKS!

Also the last picture above was taken for two reasons: to show her deep knee dimple to the AMC support group for a discussion on the topic and also to show off her straight leg! You heard me! Straight! She was born with both knees bent in tight contractures. They were out to the sides like she was sitting cross-legged in my womb. I had complained a lot about my ribs hurting where those knees were, but my doctor largely ignored me and said that pregnancy was uncomfortable and that the baby will often poke the mother.  (She must have thought I was the biggest whiner… well, as a pregnant woman that was not far from the true. :)) Both Lali’s knees came out in bad shape–both with large dimple deformities (that I find adorable now that they are made more pronounced by baby fat :)) and one with open, bloody wounds. But those knees have been through a lot of stretching and have become much straighter. Her right knee is straighter than we had ever expected it to be in her whole life! 180 degrees being a straight line, Lali’s right leg is around 170 degrees (!) and her left leg is around 135 degrees. So much improved!

By the way, the same orthopedic doctor who told us that we should ignore her legs and not worry about doing surgery to straighten the knees because she would never stand or walk also told us that even if we did straighten her knees with stretching, they may not bend back. Simply stated, HE WAS WRONG! Her knees are straighter than ever and they bend back just fine. And if she stands one day (which I’m no longer ruling out), I’m marching her into his office and having her do one of her little wiggle-dances while standing on his desk!

PS: Sorry for getting this post up so late!

I just had the best day with my baby and I just have to tell everyone about it! We played for hours and sang songs and read together–it was great! She is sleeping now and I miss her.

Today I did her stretches just twice, but both times, despite being a little stiff, she wasn’t too fussy. I took big breaks and gave her lots of attention and distractions. She only cried through the worst three stretches, and was even smiling through the other ones! I did her stretches at church in the courtyard while other people and their kids distracted her. She didn’t cry at all! Of course I skipped those last three. She was such a good girl though.

This morning I figured out a new use for her supination splints by stringing up her arms for some elbow bending. The soft materials are much better than her hard elbow splint. I’m pretty much a genius. Just got to figure out the blood circulation problems.

Lali likes kisses on her tummy and tickles on her toes and anything that involves hanging upside-down. I showed her a picture book with baby animals and after I said each of their names, “giraffe, bear, lion” she would squeal the same syllables, “squeal-squeal, squeal, squealion.” I’m in love with my baby!!!

This weekend Lali gripped my fingers strong enough in each chubby fist to support being lifted into a sit-up. We were thrilled she had enough hand strength! Then Charley and I tried to teach her how to snap. (Too soon?) She just stared at us like we were nuts. This went on a while. :) 

I found out I like spelling her nickname ”Lali.” I just like it. Still pronounced LAY-Lee.

My baby is the bestest ever.

The end.

Joshua David Circo

He’s finally here! Megan, after a bit of a scare (more than a bit at the time) gave birth to a perfectly healthy and perfectly handsome baby boy via emergency C-section. He’s so perfect! I love his little fingers and his little ears and his little nose and his little everything else! And look at that perfectly round head! He has Megan’s nose and John’s forehead, but he didn’t open his eyes much for me so I can’t tell on those.

Megan, as you all may recall, was Laelia’s babysitter every Monday for months and months. She did Laelie’s painful stretches, physical therapy, played with her and went through the switch from milk to solids with her to name a few things. Near the end, Megan did Laelie’s stretches awkwardly bending over a giant tummy. We’ll miss her but we’re excited for her too.

Unfortunately Laelia and Joshua haven’t met yet! A security guard stopped us on our way up to visit and told me NO BABIES! Well he was nice, but he told me to go home since Charley wasn’t there yet (more on that later). So Joshua’s daddy, John, had to come out and watch Laelie while I visited with Megan and baby Joshua. It was a baby switcheroo. Then Charely finally arrived and we switched back. So Laelie was stuck in the waiting room with other kids (as old as twelve!) who were banned from seeing new moms and new babies.

Boooooooooooooooooooooooooored! 

After visiting with baby Joshua, Charley took me to dinner to celebrate all the good things in our lives right now. Recently we heard that Laelie’s arthrogryposis was one of the worst cases of muscle atrophy they (certain medical people) had seen. There are worse cases in general, but of arthrogryposis kids, Laelie is not as functioning as we would have liked. Although they did say that they marvel at the fact that we got her straightened out as much as we did. And that’s with stretching and serial casting only, no surgeries on her upper body yet! We’re still hoping for the best, but it has been settling in our hearts that our daughter may need some extra help in life. Still I am amazed at all she had accomplished in her short life so far. But this news and some other minor things we learned (that I’m not going to focus on now) were very hard on us–Charley especially. So we have been trying to focus on all the good things. And we couldn’t think of a better place to celebrate than the hospital cafeteria where our good friends just had their new baby.

Well, we were going to go to the hospital cafeteria but Charley had gotten so lost on his way to the hospital that he was parked too far away. He told me that he didn’t want me to feel like I was the only birth that he got lost on his way to. (If you haven’t heard the story, Charley was driving me to the hospital to have Laelia and my dad and Christina were following him. The hospital is right down the road and we had been there for ALL of our childbirth classes. So of course he got lost. Did I mention it was right down the road?! Seriously. :)) So Chili’s got us. It was a little past Laelie’s bedtime so we asked for a quiet booth so she could sleep through dinner. Later we joked to the waiter, “We asked for a quiet table,” and pointed at our happy daughter who was busy singing (squealing?) a happy tune.  

I’m having a blast!!!

While Megan is not coming by anymore, we still have Tammi. One thing that came up during our celebration-of-positive-things dinner was that Tammi is in her nesting stage of pregnancy. Woo hoo clean dishes! At first it was just nice that Charley was finally doing more housework… until he thanked me for doing it. Then we figured it out. Ah nesting, I remember that burning desire to bleach my bathtub at 2AM. Good times. We’re trying hard not to take advantage of the situation.

Another positive thing we are thankful for is that we have Chelsea coming over doing Laelie’s stretches three afternoons a week. It’s been nice not having to worry about those. Actually when she started doing the stretching, everything started to get right with the world. It is amazing how much a helpful and willing person can change the mood of an entire household. 

We also talked about Laelie’s shoes during dinner. We were looking forward to throwing them away the next day and getting her new AFOs. But when I called the orthopedics people up to see if they got the shoes I was informed that we could not get them that day. Why the heck not!? I wanted to know. The earliest the orthopedicist could see us would be Tuesday the 26th right before occupational therapy. Turns out this company is family owned and operated (one of the things I love about it) and the receptionist/wife of the orthopedicist, you guessed it, had a baby! Haha! I guess I’ll let it slide this one time.

And that’s when I realized that me and the people in my acquaintance are directly responsible for overpopulation. Yeay for babies!

Baby with the green nose.

Laelia had a fun time at church this morning. Most of it was spent in the nursery with her friends. Fellowship of San Diego had the Slooze people come and slime all the kids. Laelie got slimed by pastor Ron before we left. I guess the slime was made out of vanella pudding and apple sauce because it looked gross but smelled good. Laelie had fun licking it off.

Also in the world of Laelie news, we can sit up! She is sitting up now by herself! (I forgot to mention that in the previous blog.) I always thought she would sit up, but it was one of those things that wasn’t guaranteed. So she showed off that skill in the nursery. We are still working on getting her into a sitting up position, but that involves kicking some tummy muscles into gear. Actually those tummy muscles don’t want to do their job so her back keeps her upwards and that makes her lean forward a lot. Here’s a picture:

A funny thing happened this morning. I don’t know how appropriate this story is for all ages though. :) A couple in an ajacent apartment were having “relations” pretty loudly. The woman was making very interesting noises and it sounded like it was coming from our living room! All of our windows are open because of the heat and all these apartments are so close together so that’s why it was so loud. I didn’t know if I should say something, but my inner debate was settled when my 9 month old started mimicking that woman’s sounds!! It was the funniest thing ever! Laelie really picks up on noises like that. She matched the noise perfectly. I started to laugh and make different (expenentially louder) sounds, but it was a competition for volume. Finally I yelled out the window, “Thanks for the show!” to which I got a husky male reply of, “You’re welcome!”

Speaking of noises, Laelie can now make the “la la” sound by moving her tongue. Only instead of moving it up and down she moves it side to side. She has said her own name a few times that way on accident. It’s an easy name for her to pronounce. (So there!!! :)) Now if all the adults in her life could do it.

Well Dada and Auntie Linda are in Disneyland today making me once AGAIN the single parent. But I’ve been promised that tomorrow I get to take a few hours for myself with no baby responsibilities. I’m looking forward to it. But as always, 20 minutes in I’ll start to miss the little bug.

To explain the weird thing on Laelie’s arm in the picture above, we are trying out a wrap-around contraption to help with Laelie’s inverted shoulders. So far her arm looks great when she’s wearing it and then reverts back when it’s off. It also leaves candy-cane stripped red lines up her arm. We’ll see how long we put up with it. And this Tuesday she will have new elbow splints that will be awkward but hopefully let her see her hands more.

I actually saw a sleepy baby in the nursery today with nothing on his arms or legs and wondered for a moment why his mother didn’t put his splints and braces on. I had to catch myself before I said something. When Laelie gets sleepy it’s a mad dash to get all her gear on so her feet and wrists don’t go back while she sleeps. It’s weird to see babies barefoot and fancy free. It doesn’t seem natural, but hello that IS natural! It’s my life that’s outside the mold. I wonder if I’ll ever get used to that.

Let me just blow the dust off of this website. Ffffffff. There we go. My computer is good and dead right now leaving me typing on a borrowed laptop with no clue how to upload my pictures or videos directly on the page. I guess I’ll resort to links. I also haven’t been on this site for a while and I came back to almost one thousand pieces of spam attaching themselves to comments and Laelie’s guestbook. Time to roll up my sleeves and clean this out.

Hello from the land of Gagas! “Ga ga” being the only thing my daughter says all the time. The joke is that every time she says “Ga ga!!!” Charley and I look at each other and say, “She says she wants you.” She has been able to accidentally stumble upon a “b” or “d” sound to the instant attention of everyone around her which, in turn, excites her into more loud and energetic “ga ga”s. She did have a “t” sound once. She was watching me intently while I played a video game, Legend of Zelda (got to keep the kid cultured :)). I got a treasure chest in the game and as my character held it over his head I said, “Ta Da!” in my excitement and I got a small, tentative “ta da” in response from the peanut gallery. But the best one of all happened when Charley was in Portland. My husband has been on a business trip all week leaving me to single parent the days away. I sent him this video of his little girl saying her first word. He had tears in his voice when he called that night. When he finally got home yesterday night around 11:00pm, he watched her sleep for quite a while before going to bed.

I am just so thankful that my little one is starting to make noise! Many kids with her condition have lots of speech therapy because the muscles, nerves and tendons are affected in lots of ways we can’t see. Amyoplasia is a very insidious condition that way. But now I think that even if we do have some speech therapy, it won’t be as bad as we thought. In fact it looks like she will be able to speak with some degree of quality. Praise God! A lot of people could have guessed that she would have those skills based on the tongue acrobatics she can do. But it’s still good to hear those first sounds!

Another breakthrough has been with Laelie’s movement. She can now figure out the connection between flinging her body, shrugging her shoulders and arching her back to achieve some arm lift. She is missing biceps so she cannot lift her arm directly, but I have watched her fling her arm against the couch and then swing her body again to get it a little higher until it’s high enough to look at. Which is amazing! We had her use her new skills to get a small toy we placed up on her bird bath toy. We were bribing her with cookies and attention and told her if she got the toy we would take her to Disneyland. I don’t know how much she understood us, but she wanted that toy pretty bad. And she got it, but as is usually the case, she got it her own way. Here’s the link to the video of her achievement. (The best part is when she realizes it’s too hard to get it the “right” way.) Now we have to take her to Disneyland. A deal’s a deal. Thems the breaks. That’s the way the mop flops, the cookie crumbles and the world turns. And all that.

So much has been going on lately. We’ve had a lot of trials and a lot of things breaking. Our computer kicked the bucket again as you know. Charley and a friend built it from parts his last year of college so I don’t think it’s entirely internally all there. I can’t even turn it on. But the more interesting break this week was that of our decrepit bed… while we were in it… around midnight. Yeah. I’m starting to realize why we got it so cheap at that garage sale. So now we’ve been sleeping on the floor because it’s been too crazy the last few weeks to muster up the energy to get another one up here. But one bright spot in my breakage list comes from the kitchen. My $10, older-than-my-marriage set of pots and pans finally got thrown out after we realized that neither one of us was adding pepper to our food. It was instead bits of our pots’ and pans’ Teflon interior flaking off into the food while it was cooking. My aunt Charlotte and cousin Charilyn surprised us with a set of pots and pans when they came down to visit!

Speaking of surprises, last week we got an anonymous gift that will cover much of my flight to Shriner’s for a visit with Dr. James, a second opinion for Laelie’s feet, (whenever we can arrange that) and will also help with a $300 out of pocket expense for Laelie’s orthotics! (Long story.) I was so thrilled that I was stuttering! The week before we had another gift that will cover the other half of the flight expense. Thanks K and D! It seems that lately all of our needs have been met. Praise God!

We also had Laelie’s evil EMG test. The link I just threw in describes what an EMG test involves, although I’d like to change the description of “small needle” to “gigantic needle,” as far as it I can discern from Charley’s relaying of the experience and the giant needle marks on my baby. She got stuck four times: two in her calf, one in her thigh and one in her arm. I’m glad I didn’t go. It was a depressing visit. The tests were largely inconclusive, but the guess is that she has some sort of major nerve damage. What it did show was extremely poor muscle tone. Dr. Schwartz told me about it when I visited him because he had just received the report. We knew the muscle was bad, but we forget how special she is especially since she finds ways to wiggle around. They now suggest a muscle biopsy for our next step. The procedures just get more evil.

This was a dark time for our family. What we had suspected was now proved on a test. The muscles in her arms and legs are in extremely poor shape. I start to wonder once again how her life will be. I wasn’t okay for a while, but I’m better now.

As far as daycare, we have been denied by over 30 daycare centers and homes this last week. The week before I was denied by around 20 centers before I switched to calling homes. (I have three referral groups helping me now.) That was hard on me emotionally, but more so this week with Charley gone. We do have one lead in El Cajon, about an hour in rush hour traffic out of our way (round trip). I think our gas budget is a bit too shaky for this, but at least it’s something. We may also have another home daycare willing to give us a chance, and even though I’m not thrilled with this one, it may be a temporary solution since I should really get someone by the end of August. This will be a hard decision.

Two weeks ago before I realized that no daycare center will even consider taking Laelie, I explained her disability to one daycare who offered us a tour anyway. When I showed up they seemed excited to have us until they asked if she could feed herself yet. I reminded them of her disability and she was denied on the spot. I guess the person offering us the tour was not the same person who does admissions so there was a miscommunication. The lady started to say it was impossible to offer any services for my little girl, but after one look at my face (which was later described to me by my sister-in-law as “about to break down”) she changed gears and started to make some phone calls. I just now (two weeks later) finished following all the leads she gave me. Yes, they were dead ends (although I haven’t hired a professional advocate like she suggested), but it was so good for me to have other options to pursue. I was just so grateful because that could have been a terrible experience for me, but I left encouraged.

Instead what has been a terrible experience for me has been the drama of Laelie’s orthopedic shoes. Orthotics are expensive and precise. The shoes she has now hurt her. No matter what kind of mole skin or thick sock or lotion or powder or whatever we try she still has bruises and rashes from hard straps over her skin. If we don’t wear the shoes, the surgery will be worse on her. It’s a lose-lose situation. So on a referral from another mom that Early Start called for us, we got the name of a man who, using orthotics himself, makes children’s orthotics and gives special care and attention to his clients because of his experiences as a kid. We met with him and he explained why the shoes we have now hurt her and why our KFOs don’t work and he offered a game plan to correct this and different shoes that would be gentle yet firm. I was thrilled. I gave his staff all of Laelie’s insurance information and they said if there were any problems they would call me back within the hour. I then called our insurance to let them know a prescription was coming in the next weeks. I then set up an appointment with our orthopedic doctor to get the prescription and get it sent to this guy. Then I was told after waiting a few days that the doctor’s office won’t send out the prescriptions (or do anything because they’re all lazy) until the doctor finished all the notes from our appointment that could take two weeks. So I went to Laelie’s pediatrician and I got him to fill out a prescription for Laelie’s shoes (Dr. Schwartz is the best!) so we didn’t have to wait for these shoes to destroy my baby’s feet. Then I called our insurance back to see that they got the fax and they labeled the whole thing urgent since what she had now is damaging her feet.

Then I get a few phone calls and it turns out that this orthotics company is not covered under our HMO even though they took all of her insurance information and told me they would call before my appointment if they didn’t accept my insurance. But they didn’t. And insurance won’t cover it. And it will be a $300 deductible (which I don’t really know what that means). And Laelie is STILL in her hurty shoes and I’m so angry!

*pant pant*

So please send up a prayer or two that this works out. She needs to be in her shoes (AFOs with a Dennis Brown bar) for many more years to come so this is a really big deal. And I needed these new shoes for her last month!

I mentioned that we went to Laelie’s pediatrician but what I failed to mention was that it as a really good visit. We found out that our baby was in the 10th percentile of length and the 80th percentile of weight–not a great combination, but the arthrogryposis doesn’t exactly let us stretch her out all the way and the amoyplasia doesn’t exactly let her work off the weight. But besides finding out all the stuff that our baby “should” be doing at this age but isn’t, it was a good visit because she only had to get one shot and one blood test. Plus I love Dr. Schwartz and his staff!

Despite all our troubles, we have gotten a respite from our troubles in the form of, um, Respite. We qualify for respite care through the Regional Center provided by the YMCA. We have so many hours a month that we can use to go grocery shopping or go on a date BUT WE CAN UNDER NO CIRCUMSTANCES USE RESPITE WHILE I AM AT WORK. Thus my daycare dilemma. We had to use quite a few of those hours interviewing different respite workers because we had a little trouble finding someone who would do Laelie’s stretches, but we finally found one. It’s been so nice. Plus the baby gets a lot more attention this way. Last Saturday I came home from Ryan and Lauren’s wedding (GREAT WEDDING!) to my little girl with a big smile on her face. Her respite worker said that she taught her how to say, “Mama” while I was out. I was skeptical so I said, “Laelie say, ‘Mama’ for Mama.” And that little pudgy face said it! It happened only once and I haven’t for the life of me figured out how to get her to say it again. Right now the only “m” sounds she makes is when she’s screaming her head off. Yeah wonderful. :-/

I know this is turning into the biggest, longest blog ever but I don’t know when I’ll be able to use a computer again so I’ll just keep going. Maybe you all should pace yourselves.

I don’t know what I would have done without Linda living with us this summer. She’s only staying until she moves to Bakersfield, but I have really enjoyed her stay. She is such a big help with Laelie. I don’t know what I would have done without her. And she came during a particularly rough time. God bless her.

Laelie has a new washcloth for bath times in the shape of a lion. It’s called a washcloth puppet. It plays with her and sings to her and tickles her with it’s “paws” (my thumb and little finger) while washing her. She giggles her head off during bath time! It’s the best ever! I wish I could put a picture up, but alas. Why was I using those boring washcloths before? Why oh why?

Work has been rough on me lately. I think these last few weeks with daycares and doctors and insurance and getting denied by iHSS again etc. etc. have been compounded by the stressful increase of work at my job. Right now we are going through a summer rush. I am a customer service rep for DawnSignPress, and a large part of my job is order entry for textbooks. Every college and high school who teaches ASL is ordering now for Fall semester. We have the best curriculum that has been #1 for years with no real close competition and it’s being updated this summer so it’s just been crazy. I’ve been getting out of work late almost everyday for the last couple of weeks. And when I do come home I’m stressed out. There was one week where I think I saw my babysitter only once before she left for the day because I got out of work so late. Good thing Linda is staying with us or I don’t know what I would do. My problem is that I’ve been trying to do too much work, but I only stay part time. I have had to realize my limitations and the fact that I just can’t put in the work to help out the rest of the staff that I would have liked. That’s hard on me, and hard on my friends at work. But I have this rule against melt downs.

It looks like I’ll be leaving for a business trip of my own in October after Laelie’s first birthday. I’ll be in Washington DC from Oct 15-19 at Gallaudet University. This will be my first time to Washington as well as the famous school for the Deaf. I’m excited, but Charley is already apprehensive about his turn as the single parent. His trepidations have me tempted to get him a babysitter… or at least have someone checking to see if he’s eating.

Okay have to go now. Linda is so great. The end.

Me and my church peeps!

Laelia holds court at Sunday brunch. 

I have continued to be impressed by the support we’ve received from the little church down the road.  We have just really been shown kindness and generosity since the first time we stepped through the front door after determining that my pregnant tummy needed some churchin’. :) Actually one of the first people I met was Brenda, who through some preternatural ability asked if I was pregnant even though most of my family had no idea by this point. I wondered aloud on the car ride home if I looked glowing, fat, terrified or if someone finally guested why I was gracing a church’s pews for the first time in a long while. Actually I’m surprised they didn’t kick me out after my pregnancy hormones and constant all-day morning sickness for 17 straight weeks made me totally irascible.

Then there’s something about grieving the loss of a fully-functioning child where a church can either alleviate grief or complicate it. In this case, my new-found church was a balm. Still I wasn’t ready to reach out for help until recently. I have understood for a while that the government was not going to help me get into Together We Grow. In fact, the system had changed in the last few years to exclude children like mine from getting help with almost anything, especially day care. I have heard, “She has fallen through the cracks of the system,” so many times in the last few months by so many sympathetic people who work within the system itself. It got to where we would get evaluated by a new program and immediately start to wonder what stupid technicality they would use to kick us out. (Note about her muscle clinic on Wednesday: It turns out she needs to be one of forty muscle conditions to qualify to stay in the clinic. We’re hoping amyoplasia qualifies her.) So when I finally decided that I cannot do this anymore, and I was out of ideas, I barely had to reach out before people responded.

I wrote a note about needing help with Laelia’s stretches in the afternoons (one of the biggest things I was counting on Together We Grow to provide), and put my note in the offering plate at church. A few days later the church secretary/office admin, also known as Chelsea, responded. Not by saying she’d pray for me, but by coming over three days last week and doing Laelia’s stretches and PT in the afternoons!

Also last week I emailed Phyllis from church about possibly being Laelia’s respite provider, since she had experience as a social worker and I thought her kids were adorable. The next thing I know she’s applying to the YMCA and putting Laelia’s name as the recipient.

Then two weeks ago (I’m not going in any order here), I met with Rana who invited me to a workout/Bible study on Wednesdays with daycare provided. Brenda (the same as mentioned above) came over to my apartment to learn Laelie’s stretches so she could do them while I’m working out!

So last Wednesday I worked out for the first time in a billion years. :) I felt relaxed knowing my baby was getting her stretches, and I wasn’t going to have to do them! When I went to pick her up, Brenda told me that when Laelie started to cry (and remember she cries 100% of the time with stretches), all of Lisa’s kids who were also in the nursery started to sing to her to make her feel better. Awwww! They also walked up to her and said, “Don’t worry baby, we love you.” It’s kids like those who are going to be sympathetic to people with differences. And kids like those that will make kids like mine not feel so isolated.

Then a few days ago, Chuck and David came over (bringing Chinese food) and installed another AC unit in our living room that’s removeable so our apartment manager won’t fuss.

Then today Lisa gave us a cool toy to help Laelie with her PT. (Lisa has been amazing ever since Laelia was born.) And Michele gave us a whole bag of baby oatmeal (I will never have to buy baby oatmeal as long as I live) since Lacy is mastering solids (what Charley calls “people food”) :) much faster than Laelie. She also gave us some toy instraments to help with Laelia’s OT. And also several other people asked about the baby.

I’m trying to remember the conversations Charley and I had about moving back to Placerville, since we at least had my family up there and really only a few friends down here. Now it’s like we have this amazing support group and I don’t know what we’d do without them.  

I’m so happy my pregnancy hormones (notice I put all blame on the pregnancy) didn’t scare anyone away.        

This is the picture I took out of the dictionary right next to the definition of precocious.

Have you ever wondered what it looks like to type up a blog? Well here’s the picture. Laelia is happily tummy-down in my lap the whole time. When she was little I could get away with holding her upright, but now she just stares at the screen so down she goes. Over her legs and behind her head is the keyboard, and if I bend over it too long, she will try to bite my tummy with that one tooth of hers.

Laelia got some new KAFOs this week. I call them her “legs.” Come on, honey, time to put on your legs! Her daddy took her to Scope and they affixed a Dennis-Brown bar on there too. Now her knees and feet are taken care of. Finally! The only problem is that it falls off (slips up), and pinches her thighs even when they’re on correctly. Nevertheless, it’s a step in the right direction.

They have been slipping a lot making me constantly mess with them. When they do slip off completely, I am forced to put on her old shoes or watch her feet get worse. The last picture of her foot I took before we got these KAFOs was this one:

I hate this!!!

That’s her foot bloody with skin peeling off. They are also bruised. It makes me crazy. Now I have to wait until Charley gets back from Idaho to call up Scope and make them fix stuff. Because I’m *cough* fired and stuff.

In other news, it’s becoming clear that Laelia is missing biceps and deltoids. So Jill, Laelie’s OT, referred us to a muscle clinic through Children’s to be sure. I called the number and got the coordinator’s voice mail. I explained that Laelie had amyoplasia (a-no, myo-muscle, plasia-growth) and could she be seen by the muscle clinic people? Well I got two calls on my voice mail at work. One after the other and from the same department. The first one was from the lady who was the official coordinator and who was going on vacation. Her message was not very positive. She couldn’t get me in the clinic, but here were some numbers to try, and this whole thing would be a hassle, and I could call her back when she got back from vacation in mid June. Oh great. But right when I was getting discouraged the very next voice mail was from another lady in the same department who was handling the first lady’s job while she was on vacation. OF COURSE the muscle clinic could see me. My baby had amyoplasia? Well then we can get in as soon as the 11th! Is there anything else she could do for me? Etc. Etc. What perfect timing! I can see God manipulating events here.

Now I’m praying for a cure. I know lots of people in my situation have prayed for cures, so I guess add me to the list. I think I had a faith-related question answered for me recently. I haven’t been praying for my daughter because I had lost my faith, especially in that area. I found out that a high percentage of people believe in medical miracles, but my question was, “Why doesn’t God heal amputees?” It’s an old, and Googleable question. Now that I’ve dusted off my Christianity and shoved it back on, I’ve thought more about this question. I really think God works within the laws of nature that he has set up. He very rarely bends those laws, and even then, only under very specific conditions. In general, God sets up these laws and helps us through the natural consequences of these laws. For instance, he’s not, as a general rule, going to change gravity to help you avoid getting hit by a bus. (Yes, I did get that example from Ron.) But he may steady the driver’s hands or use your own adrenaline to help you jump out of the way. Plus, as I can see my grandma Lucy saying, we wouldn’t want him screwing with gravity every time some dummy jumped in the road anyway! God just seems to be doing a lot of healing through medicine or technology or working within the body’s own amazing system. This explains why someone may be cured of cancer, and prayer can be an integral part of that healing process. But with amputees, I don’t see his motivation for healing people there. It would be changing drastic laws put in place in the universe. And what grandiose purpose would it serve? My daughter is not an amputee, but she is definitely missing some nerve endings and muscles. If my daughter was fully healed right now I might think she was misdiagnosed to begin with. (Wow, I just realized that.) So maybe God won’t heal her, but he may use this muscle clinic (and future technology) to maybe help my daughter someday lift her arms.

I know we can ask things of God and he will hear us, and do things for us if it’s within his plan or will, biblically speaking. People have told me that if I was mature in my faith, I would reach this point of wanting God’s will above my own. Which sounds great, but it means that if my daughter’s full recovery is not on the list of things God wills, then I should want his will to be done over her being whole. And when it comes down to it, I don’t want that. I want my daughter to be cured. I guess my faith will continue to be rudimentary then. It would take Jesus-like faith to do something like that–pray for the Father’s will to be done instead of walking away from faith and living a normal, torture-free life!  That’s something beyond me. (Although I bet his mother prayed like I do.) I just hope people with more faith than me continue to pray for a cure for kids like mine.

Announcement: For the people who have asked about pronouncing Laelia’s name, I have added a pronunciation guide to the Welcome page.(http://www.laeliasky.com/about/) 

It’s been a busy week. Tammi was sick this week so we had to stagger our schedules a bit, and that left me no time to blog. By the by, Tammi is able to stay and care for Laelie this summer! Yeay! She’ll stay until she’s too big to stay anymore. I’m not being mean, she’s pregnant! Megan, Laelie’s other babysitter, is also pregnant. I’m surrounded! :) 

Tammi and her husband, Rodney, went to Idaho for two weeks in April. That was when Laelia’s grandparents came down to help me out. That trip to Idaho was to interview with Mission Aviation Fellowship. They are going back in August for a flight evaluation, but in order to get proficient on a specific plane, Rodney will have to get practice. And of course, with gas prices the way they are, it will be expensive. If anyone wants to help them out financially, email me and I can get you more information. They have something set up with Shadow Mountain.  

Or how about no one help them out and then they’ll never leave! Yeay! Okay bad Alexis!

Speaking of babysitters, Aduma flew in to babysit Charley last weekend. It was great. They went to the beach and played video games and talked in that adorable way guys do where half of the words are unspoken and the other half are in code. ”Once a 41er always a 41er,” and all that. Then Aduma cleaned my kitchen! He said it wasn’t as bad as last time: the ultimate praise! Then they both did a ton of laundry. I can see my bedroom floor again!  

Then Sunday it was my turn to work in the nursery. We only had three babies including Laelie. It was nice because the AC was on and I was happy to hide from the heat. I mentioned to Brenda, a fellow nursery combatant, that it was really hot in my apartment since we had no AC. I even had to do baby’s stretches in front of the fan. Actually she was in front of the fan a lot during our little heat wave. Here’s a video.

Another problem with the heat was that Laelia wasn’t sleeping at night because she was so hot and sweaty. But the most amazing thing happened! Just a couple hours after *mentioning* it to Brenda, her husband, David, and his friend Chuck had an AC unit right over baby’s crib!  

Ignore that round thing on the dresser, it’s an expensive peace of mind device for crazy people.

Also on Sunday there was a cookout (cook in?), and a donation was taken for Laelia’s medical costs. We ate hamburgers and hotdogs while baby watched and made chewing faces. Phyllis even made a little canister with Laelie’s pictures all over it. It was great. Jill, Laelie’s OT, found a doctor in Minnesota who *knows* arthrogryposis and would be willing to see Laelie if we flew out there. We’re still considering it. We ruled it out because of expense, but now… well we’ll see. I’m excited! It’s so nice to know there are people who care. We really do appreciate all of you guys!

Rachel is watching Laelia to give me a “blog break,” but when she’s not here, I have to listen to, “Mommy! Mommy! Baby!” the whole time. For some reason that tugs on my heart even when it’s an electronic voice. Here’s what I mean.

 I suggest waiting for Groucho to shut up and then playing both vidoes at the same time to see the full comparison.

My favorite part is at the end when she gets frustrated that the music stops and starts to squawk, but then she activates it and is all happy again.

Grandpa thought I made a good car model.

We went to the beach and to the car museum. We ate our first veggie and played puzzle quest for hours. We went on walks and went to the doctor’s office. We had lots of fun with grandma and grandpa!

While I was at work, the grandparents kidnapped baby and took her to the car museum. I just finished going through a little over 100 of their pictures of cars to find the one I used at the top of this blog. Grandpa was distracted by car heaven.

When I went to pick them up after work, Laelie gave me this big goofy grin. Sometimes Laelia looks wise beyond her years, so it’s grins like these that let me know there’s an average, goofy baby lurking beneath those typically wide, intelligent eyes. The grin did not go unnoticed by the ticket lady at the museum. She commented, “Look how that baby lights up when she sees her mommy!” I can’t tell you how good that felt. It makes me feel like I’m queen mommy! I walked out of there with a huge grin on my face too. :)   

Laelie’s orthopedic appointment was another outing we had. It was something I set up a month in advance so it fell during the grandparents’ visit. This appointment was the one where Scope (who makes the braces) and our orthopedic doctor (who prescribes the braces) could get together and hash out what we’re doing with Laelia’s poor feet. Well I had to wait an hour and a half because our doctor was booked up and Jesus from Scope couldn’t wait that long. Laelie’s grandma and I set up Laelia’s play gym replete with PVC piping, arm restraints and toys right on the floor in the waiting room. If we had to wait, we’d wait in style! :) We also made friends with a mom and her teenage son who were also waiting for the same doctor. The mom was so nice. She cooed over baby and when their time came to go in, she offered me her spot! That never happens. Last time we were in this waiting room I overheard a daughter say to her mom, “But mom that’s lying!” Her mom then dragged her to the corner and reprimanded, “Do you want us to have to wait for the doctor?!” It’s people like that raising people like that who make my experiences with doctors’ offices harder. So to be offered someone’s spot…! I can’t tell you how great that is.

Laelia’s shoes don’t work right. They slip every time you pick Laelie up and they leave giant red marks. We’re trying to get some AFOs with a Dennis-brown bar, but even though the prescription was written for them, they weren’t sure they could be built with a removable bar. We’ll see.

It was nice to have visitors. I already miss them. I told my friend that I had kicked out the grandparents yesterday, to which all she had to do was raise an eyebrow before I admitted, “Okay, so I begged and whined for them to stay.”

Here are some random videos and pictures taken from grandma Christina’s camera of baby doing baby-type things. Enjoy.

Throwing sand at grandma.

Goofing off with grandpa. (More like watching grandpa goof off. :))