Laelia Sky

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. :))

I’m making my sick mommy feel all better.

My auntie came all the way from Idaho to see my new KFOs!

My new dresser is finally built!

Wow, what an incredibly busy last few days! Thanks for all the advice and ideas and encouragement and help and contacts and prayers and everything! We have an SSI interview set up for Friday, an iHSS application on the way, a denial coming from insurance that we can show two advocates our insurance showed us, a Department of Health Services application and a few other long shots yet to try. We are expecting denials for most of these, but getting those denials in writing helps us build a case when we complain to the Department of Health. THIS IS SO CRAZY!!!

And I would have missed it if not for some emails, but Laelia turned six months old Thursday! Yippie!

My milk is almost completely gone; I get about three ounces in a 24 hour period. It happened because of sickness, not eating enough and stress on my body. With nursing out of our routine, little Laelie is having trouble going down for the night. It is reminiscent of her first weeks of life. I’ll jolt awake hearing her cries, only to realize that they are only in my head half the time. Her system is also adjusting to the formula, but she’s still a little constipated. It’s weird when her tummy bothers her since it never has before and I find myself in a panicked scramble to take off all her gear (braces and splints) thinking they are the culprit, only to have to put them all back on again. 

We also finally got our KFOs! We use them four hours a day and the braces the rest of the time, including nights. We need the right KFO adjusted since her leg is shorter on that side because of how the AMC pulls her leg up. I called to get that done, but the doctor was out of the office–hopefully in the next few days. Our orthopedic doctor had a death in the family (which how can I help but not totally understand) so our appointment with him for an evaluation for her KFOs won’t be until April 24th! We are also trying to get AFOs (Ankle Foot Orthotics instead of her Knee Foot Orthotics she has now) to straighten out her mid foot breakdown in preparation for surgery. According to Scope, the braces help with club feet, but the AFOs really help for arthrogryposis-related club foot. No one told us this! Thankfully she was casted for AFOs the same day they were mentioned. I LOVE THAT! Now we just need to run it by our orthotics doctor and get that auth. I also have a contact now for Laelie’s insurance who I can bug when these things need authorized. It gets done in half the time, but I’m working on getting it done even faster. I am determined to be the squeakiest wheel!

Laelia’s aunt Linda came down for her spring break from college on Friday. What would have been incredibly bad timing (after Charley and I got the rejection by Regional Center, I got sick, we ran out of hope, scrambled for options and were at each other’s throats…), but it turned out to be great. I came home to Linda cleaning my apartment… and she hasn’t stopped since! It looks livable again especially upstairs. After a Linda-made dinner tonight, I’m not looking forward to her leaving tomorrow. I’m trying to figure out how to hire her full time. Linda and Charley finished building the dresser that the ladies at Fellowship of SD got her. They have been complaining of random pains ever since. My fingers hurt, my back hurts, my spleen hurts… It looks wonderful though!

We are indeed flying to northern California this Friday (right after our SSI appointment) for Gram’s funeral. We made the plans after grandma Wynema sent me some birthday money for the flights. (When you’re turning 26 and your grandma is still sending birthday money, you’re most definitely spoiled. :)) Baby will be in tow. It’s depressing to think about all the incredible women that will not be apart of her life: Joy (Mom), Louise (Gram), Lucy (Grandma). It’s a tragedy since I know they would have adored her and fought for her like they would have for me, like I am for her. Now I’m alone and unable to replace all of them in her life, but more than that, I have this incredible responsibility to take all they have given me and supply that for my daughter. That is a responsibility that weighs on me heavily at times. She’s the apex of a legacy of strong women. And the culmination of love that has spanned generations.    

Laelia’s Grandma Joy and Grandma Lucy. In memory.

Also proof that I am capable of growing hair… eventually.

Can’t sleep until I get that mobile!

First nap in our crib interupted when we spot the mobile overhead.

This is Laelia’s new crib! Well, new for her. It went through Joe D’s kids and then Holly’s kids and now it’s Laelie’s. It’s huge compared to the bassinet (let alone cardboard box!) that she outgrew. She goes right to sleep in here and doesn’t wake up ’till morning. Very nice for Mom and Dad! I feel all parental now that I can say, “Go to your room!”

Laelia has been able to lift her arms a couple inches while lying on her back for a while now. She arches her back to achieve the lift. She also has been able to bend her elbow under certain conditions. But I was thrilled to see her reach across her body! Then I realized that the little acrobat was simply putting all her skills together! It’s kinda hard for her and you can see the effort painted all over her face, but she’s determined. And of course once she did it once, and was excessively praised, she did it eight more times just for the excited noises that would erupt. By the end when I had documented this ability in several ways she did it again while fussing, like, ”I know you’re thrilled, but can we stop now, pleeeeease Mom!” Then she fell right to sleep! :) Hmmm, maybe Mom was being a bit of a slave driver. For those of you that have mentioned you can’t get the videos, below is the process documented through enough uploaded pictures to make all your computers crash. Enjoy.

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Sup?

Yeah we’re cool. To celebrate her five month mark, Laelia got a big upgrade in sleeping arrangements. She moved out of her bassinet and into her crib! That meant we had to kick the cats out of the crib and find a new home for the random baby crap that had collected over the last several months. We also had to clear a path from the door to the crib through the dumping station, um, I mean spare bedroom. It all paid off. I put Laelia in her new surroundings and she grinned her head off at the mobile for a while and then fell peacefully asleep for the whole night! Woot!

We love sleeping with Puppy the cat, but Mommy doesn’t let the kitty in our crib.

We made it to five months! Oh how the time has gone! Let’s see, she now sleeps at night. Her strawberry mark has faded a lot. She smiles and pouts with her bottom lip. She’s out of casts! She’s totally more fun now!

Gosh, I love her.

Charley and I also love having our bedroom to ourselves again.

It also looks like Laelia is also going to get a little party. Lisa from church is giving Laelie a baby shower and I’m really excited about it! My work did one for me and I threw myself a little one, but this will be the first real shower where I don’t have to make anything, buy anything, do any work or go to work. :) I can’t wait!

Last week before Christina, I mean Grandma, went home, we found a stroller on Craig’s List for $20! Right before we found that, we got a letter in the mail that Laelia’s car seat was being recalled. (I guess we can be hit from the front or behind, but don’t side swipe us or the kid will go flying!) So when we went to get the stroller, we ended up getting the car seat to go with it too! All for $20! I feel like a garage sale shark. With this stroller I don’t have to carry her car seat from place to place and hopefully I can avoid wrecking my arm and shoulder again. My thumb is STILL asleep from the pinched nerve!

Today I am working on Laelie’s Shriner’s application. I finally got Laelia’s birth certificate this afternoon and a MediCal appointment day before yesterday so I’m ready for action!

***Warning*** This is the part of the blog where Alexis talks about orthopedics (eg. devolves into a ranting crazy).

Also today I decided I was sick of patiently waiting for Scope to finish Laelie’s KFOs. Those are the orthotics that would cover her knees. Do you see her knees? Well you shouldn’t. They should be covered in metal and hard plastic like the rest of her. Our orthopedic doctor ordered the KFOs on February 15th in the morning. It’s now March 3rd in the afternoon. How long is it going to take? So I called them.

Would you believe they have not even started on them?

Worse than that. They had not signed the paperwork or sent it over to Laelie’s insurance for approval or anything! So they not only haven’t started on them, they haven’t started on starting on them! We were not contacted, of course, and they wouldn’t let me set up an appointment for casting the KFO molds since they don’t know how much longer it will take! If I hadn’t called, they would simply not have ever been done! The order went straight from orthopedics on the 15th to a black hole! When I asked what happened I got a shopping list of policies and was then informed about all the hoops I had left to go through. Then I was told it would be put on the top of the pile of things to get to next! Oldest trick in the book. I work in customer service, I know this game. You didn’t do your job and now you’ll try to get me to look left instead of right (through you).

So now I am forced to beg my insurance to try to get this pushed through.

Laelia’s knee caps will become solid in around a month from now. I wanted the legs to be straightened while the knees were still flexible and well before the kneecaps would harden. This could save her from painfully stretching hardened kneecaps. You see making these blunders repeatedly with my child’s care doesn’t only tick me off, it also makes her life harder and more painful! I swear if I have to hold their hands (or kick their butts) through this whole process I darn well will!

While I’m ranting about her care, let me just say that I want a KFO/brace hybrid for her legs and feet that will work on her knees while keeping her club feet straight. This contraption doesn’t exist. It works in theory, but they don’t make them since children usually don’t have this problem. I haven’t figured out who I have to kill to get it made. I was told by her orthopedic doctor that if I came in next week with this contraption, he would be impressed. Well I’m not bloody MacGyver! Why won’t anyone help me here?! I can’t wait until her Shriner’s application is finished. I hope I find a good doctor there.

I never thought this day would come. There were times I had given up all hope that she would move her arms or legs. I’m crying as I’m writing this. I’ve had my camera (set to video) glued to this child for weeks and she’s never moved like this. Even some of the amazing videos of her that I post are after hours of her not seeming to be able to do anything more than turn her head. It’s amazing that she looks like a typical child being wiggly. I’m just so thankful. I don’t know what else to say. This video says it all. Thank you, everyone, for being a part of this with us.