Laelia Sky Wesley

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!

I have talked with four people… oh wait I almost forgot the obligatory Laelia pictures.

My two teeth!

I dropped my toy! :’(

No seriously Mom, don’t get up, sheesh.

I love Megan’s bed! Zzzzzzzzzzzz.

Better? Okay, where was I? Oh yes. I have talked with four people (all strangers) this last month while out and about who saw my daughter, guessed incorrectly at why she was wearing shoes with a bar and then said, “Oh my cousin/niece/son/friend had that bar and now he/she does gymnastics/baseball/soccer/dance.” Of course I’m not going to explain in a brief encounter that my daughter actually was born with little to no muscle and multiple joint contractures. I just say, “Oh wow that’s great,” and keep walking/shopping/eating. I guess lots of kids have DB bars on their feet for different reasons. Good to know. Usually I don’t go into Laelie’s disability unless people seem really interested. It’s not that I don’t want to talk about it, I do! It’s sometimes like the elephant in the room, and I want to talk about it (not all moms do, but I do), but it makes people SO uncomfortable to hear about arthrogryposis and amyoplasia. First I hear about how they’ve never heard of those conditions. *sigh* Yes, I realize they are rare. No, there is no cure. Yes, they do exist. No, it’s not like your niece/daughter/cousin/friend… bleh. Thankful I’ve recently met great people who have not turned our conversation into a tragedy. They seemed interested and were curious, but didn’t gasp audibly or change the subject quickly.

The best thing to do is to listen. Asking questions like, “How does that work?” or “How does she react to that?” Instead of, “What’s wrong with her?” or “Why does she look like that?” makes all the difference. It’s a subtle difference, but one way of talking separates the child from the disability. That’s what I want to hear.

Actually I have spoken to a couple other moms who feel lost in what to say when someone asks about their kid’s splints or whatnot. We want to be treated like normal, but it’s not normal. We don’t want people to say they’re sorry, but sometimes we want them to feel sorry. We want them to act like nothing is wrong, but not blow off the disability either. We don’t want to hear about some person they knew who had some little tiny thing wrong with them that required some dumb little surgery and now they are 100% better, but we want them to be able to talk to us about their kids. It’s a weird balance. And the question remains, Is it better to say something than nothing at all? Usually. It depends. If the only thing you can think to say is, “God planned for this to happen,” or “You should be happier, at least it’s not fill-in-the-blank,” then maybe it’s best to just stand there looking uncomfortable. Hehe. Okay no I’m joking.

I found a little something online about how to talk to parents of disabled kids. But once again I found a list of don’ts. Don’t ask the following:

Yes well you may say, “That’s obvious! I would never say that!” But let me tell you now, Laelia is only ten months old and I have been asked in very similar language every one of those questions, except for the “aren’t you glad your other child is normal” one. Instead I was tentatively asked, “Do you have.. any.. other children?”

So I searched some more online and found another website from another mom with a daughter with the same kind of arthrogryposis Laelia has. Actually I’m getting a good picture of what Laelia will look like in the future. And while I want to make a disclaimer and say I don’t agree with everything on this website, I found one link very helpful. It was called Be Smart! It is just an honest mom talking about how she wants her daughter to be treated, and–surprise! surprise!–it’s how any mom would want their kids treated. One thing was how it’s not good to talk about/ask about the child right in front of that child! These kids are smart and sensitive! Other stories were about living in the culture of the deep south and I find California much more enlightened comparatively. But I’m totally biased.

But my favorite site was Abby’s. Here is where I found the most complete information about what I was about to face when Laelie was first diagnosed. It was very helpful for me, although Laelie’s case seems to be a bit worse than Abby’s. But then again there are cases much worse than Laelia’s out there.

But back to our original topic of what to say to someone who finds themselves a parent of a disabled child. It seems there are dos and don’ts that change with the circumstances. At the very beginning of grieving, a lot of things can be taken the wrong way. When a mom is feeling a little better, they usually only see your love and kindness even if you say the “wrong” thing. 

Charley says that some of his friends just listened and that was most helpful. Also it’s easy to screw up giving advice, even good advice. Usually it was better to avoid advice-giving. Charley also liked hearing, “Well you’ll be a good father,” or “Well we know you’ll do everything you can for her.” That type of thing that implied, without evoking pity or a lot of wincing expressions, that he cared about his daughter. Asking about the child is always good. Even when you hear answers and you don’t know if that’s a good or bad thing, it’s okay to ask, “So how do you feel about that?” Like someone would ask how Laelie is doing and we would say, “She moved her arm for the first time.” And they wouldn’t know if we were celebrating or grieving! Sometimes it was both! It was bitter-sweet. Yes, she hasn’t been able to move her arm a lot, but oh my dear lord, she finally moved her arm!

Actually it was always okay for people to say to me, “I don’t know how to ask this, but is okay to ask you about this?” As long as an effort was made to show sensitivity it was okay. But be careful because rarely is a parent going to say, “No, you can’t ask me!” Just follow their subtle cues. Like if they respond to your question with some round-about answer then stop asking. They are probably trying to avoid the question.

It is always appreciated to look into a child’s eyes and compliment the first thing you love about them. Of course I did hear a woman at Children’s Hospital once going on and on about how she didn’t think a child was good-looking so she just said, “Oh look at you!” If you have to say that, don’t announce later the reason for it. Sheesh.

What helped me the most were the people who told me they were thinking and praying for me and my baby. They weren’t afraid to hold her. They weren’t afraid to be by my side as I grieved. Who avoided giving advice and only asked hard questions after Google failed to answer them first. I loved to hear hopeful, positive things like, “She will do so many great things!” And I heard those things until I believed them. 

She will do so many great things.

Her life has so much purpose! 

She will touch so many hearts! 

She will bring so much joy!

And she did.

This has been a week of babies! Laelia got to hold a newborn for the first time this week. Here is little Jane Anne Marie in Laelia’s lap giving her a well-deserved raspberry.

Mommy always tells me my face will stick that way.

Tell me I have more hair… right?!

When I set baby Jane Anne gently onto Laelia’s legs, Laelie started to arch her back to try and swing her arm over the baby. It was so cute. Of course if I had allowed it the next thing she would have done would have been to grab whatever she could in a fist and then swing her arm again and again beating the stuffing out of poor Jane Anne. Believe me, I’ve seen this little one with our cats.

Next we visited Megan and John on Sunday (Megan’s due date) to see if her baby was coming. Even though there were contractions all day, they were never consistently closer than about six to ten minutes apart. Laelia is still waiting for her tummy friend to come out and play. We did see some tummy acrobatics, but no baby.

Hanging with the girls…

Whoa! Where did you come from?

Then Cara and Paul came over and we got to see baby Isaac again. This time, though, Laelie got to see him up close. Actually she started to head butt him! Click here to see the video of some loving headbutts. The only difference between headbutting Isaac and headbutting her teddy bears is that the teddy bears don’t try to grab your face when you’re headbutting them. When we first got there, Laelie was making those “I want it!” cries that she does when she sees a kitty. But this time she wanted the baby. We did put their hands together at one point. That seemed to make her happy.

Then Tammi and Rodney showed up with their tummy baby who is not due until October 4th (day after Laelie’s birthday). I think with a room full of people it was nice for Laelie to see Tammi since she spends lots of time with her. She seemed to be thinking, “Phew, a familiar face,” when she saw Tammi, and then went noiselessly into her arms.

As far as I’m doing, it’s weird to be surrounded by all these babies and knowing not one of them will be like mine. Actually I could spend a month in a hospital full of babies and not one would be like mine. Sometimes I forget what normal movement looks like and am amazed at what my friend’s newborns can do that Laelie will never be able to do. She will move, but she will use technology to help. Of course by the same token, there are a lot of things that Laelie will do that none of her new friends will be able to do. Like move a wheelchair with her head or have cool gadgets or get to go play at a therapist’s office once a week. It reminds me of when my friends had braces, and even though braces are not fun, I sure was jealous! They looked cool and I wanted them too. Maybe it will be like that.

I did notice myself taken aback when I walked into Sarah’s hospital room and people were celebrating instead of grieving. It was amazing! But at the same time, I had not realized that I was subconsciously gearing myself up to comfort instead of cheer. I’m chalking it up to not having been in a hospital room since my experience. The smells and sights were the same. There was even a white board and one of those portable bassinets and the IVs, etc. like my room had. At one point when talking about the C-section incision and how it’s hard to laugh, I mentioned how it was hard to sob, but immediately retracted that and changed it to “sneeze” when I realized just how depressing that sounded. But that’s all I did in my hospital room was hold a pillow tight over my stomach while sobbing. And darn it that hurt! And I wasn’t able to blow my nose because of the incision so I mopped my face with washcloths. So now I’m thankful that I have some good hospital/C section memories even if they are vicarious ones. Yeay! That means a great deal to me.

One great thing about support groups is that you meet people in your situation and you feel like this is normal. It happens that the people who find my website have just found out their baby has some long unpronounceable condition so they google it and find me. So a lot of my new mom friends have special babies who don’t move much. Now I have my San Diego friends all having babies and it’s weird that they are all so wiggly. But I wouldn’t want them any other way. It’s just a jolt, like remembering again oh yeah we’re special.

But I have deeply enjoyed holding and cuddling Laelie’s new friends. It brings me so much joy. I love it! It makes me want another one. (Note the terrified look on Charley’s face. :)) Knowing I can feel a pull of love for some little one who is not even related to me makes me certain that I could deeply love an adopted baby. It makes me excited again for the family God will give me, no matter what it will look like.

Oh and speaking of babies, we thought Laelia was a little chunky because she lacked the muscles to “work off” the weight, right? Well we were wrong. Grandma just unearthed this picture of me at Laelia’s age. Now we know whose genes to blame.

Click on this picture for the video!

My little darling is in love with every bear. It’s adorable! She also loves her duckie. We do have to help her cuddle them, but this child loves her stuffies! I have to remind Puppy to stop stealing them from her. *rolls eyes* It’s becoming a problem. I set the baby up with a stuffy and then go to the kitchen and by the time I get back Puppy has the stuffy in her mouth across the room while baby is just staring at her totally bewildered. I wish I could catch it on video. (Puppy is our tabby cat by the way. :))

We had a hard weekend, but we’re all doing better. This week we’re going to be doing some long term plans and budgets and talks about daycare and adoption and the future and stuff. All of that. We also have to discuss when we want to do that test that will determine if I can have more kids. Well I can have more kids, but this will let us know if I have good odds to have kids who are healthy and physically whole. We have to figure out if we want it done earlier (so we know earlier and can make some long term plans now), or much later with her surgery which will be easier on her. The later is what we’re leaning towards, but we had no idea how upset we would be at the prospect of not having more kids. So now I just want to know for sure so I can start working through that information. And of course we still have to meet with our geneticist on this issue as well. We already picked him out (he was the one who diagnosed our daughter). Also at the end of this week we will hopefully have Laelia’s new shoes. They are going to be pink! I can’t wait. No more sore little feet! Okay, that’s all the updating I have for now. Here’s more bear photos … just in case I haven’t crashed Phyllis’ computer yet.

While we were in the splint room waiting for the occupational therapist to adjust Laelia’s elbow splint, my adorable baby leaned over and gave me a kiss right on the mouth with a smack and everything! It was so precious! Since then that’s all she does! Since some people (read: HER GRANDMA) have demanded more videos, here is one of her giving me kisses. Enjoy!

Other cute videos demanded by her grandma include:

The one of her getting her nose kissed.

The one of her head butting her aunt Linda.

The one of her giving big open-mouth kisses to her duckie.

The one of her daddy kissing her tummy until she turns into a fit of giggles.

The one of her keeping a drum beat with drum sticks.

The one of her copying her daddy’s tongue noises.

Whew. There. That should appease the grandma for at least a few more days.

A few weeks ago, (sorry I didn’t get this up sooner) Linda and baby and I went to the zoo to see all the animals. Baby ended up just staring at all the people instead of the animals. And conversely, a lot of people who came for the animals spent a suspicious amount of time staring at (and many talking to!) Laelie. Anyone over 50 was puddy in her chubby hands. She loved her day. Here are some highlights. 

We started off the day with a healthy breakfast. How Mommy got it on my head is the real question. One change of clothes later…

We went around finding all the Laelie Bugs.

Here’s a cute one.

Then we saw the reptiles. Laelie was SO transfixed.

 

Snakes are boring. We fell asleep.

Then we ended the day in the spinny chair. Dizzy fun! (Shhhh, she thinks it’s part of the zoo. :))

Also while we were there we took the stroller up this moving walkway that went up this huge hill. Linda was out front pushing the stroller while I was behind her holding Laelie. The moving walkway just got steeper and steeper to where I had to squat to keep my balance. Then at the very top of the walkway the stroller got caught in the lip where the track rolls under us and Linda goes crashing into it! Now I’m walking backwards up a steep hill with my legs spread out all funny while holding Laelie in my arms to avoid her. All the while Linda is squealing. She finally got the stroller unstuck and we were able to get off that thing. It reminded me of my honeymoon. (Now now people. ;)) Charley hit the top of an escalator at the airport while pulling all our luggage behind him and it all fell backwards on me. I went tumbling over it and we had a great time explaining to the airport security that we were on our honeymoon. It must run in the family.

Achievement Unlocked: The Right Click!

After a bit of trepidation, Laelie warmed up to Bolt. She cuddled up to him for her lesson on how to right click. She had already mastered the space bar. By the way, did you know that if you press the space bar while reading/doing stuff online that whatever you’re doing will scroll down to the very bottom? Yeah it does that every time your baby presses that thing. Very annoying come to think of it.

It’s been so wonderful to have guests in the apartment. And oh so good for Laelie. Someone is always watching her or playing with her or making noise around her so I don’t get burned out as much. Plus I’ve seen the energy level rise significantly around here. SO NO ONE IS ALLOWED TO LEAVE!

Bolt (whose actual name is David Ringer) and Linda both introduced us to Facebook on Saturday which ate up most of our weekend. I spent so much time uploading pictures of my adorable kid that I had no time to blog. Or clean. Or cook. Or sleep. You get the idea.

But the absolute best thing about having Bolt around is all the Spades I’m winning! Girls against guys is so fun. We are undefeated! And the cheating just gets less and less subtle on the guys end. (If this does not invite Charley to a retaliation blog I don’t know what will.)

Fun fun.

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.