Laelia Sky

Grady (37)

Boy, Born May 14, 2007

“What a snuggable and happy little boy!  Grady was born with arthrogryposis of his lower limbs.  His hands and arms are fine.  He is not able to walk at this time.  He is only 2, and will so greatly benefit from surgery, therapy, and loving family to encourage him!   Without this, he will remain bedridden for the rest of his life. Please consider Grady for your son!

Contact Andrea [bamaroberts (at) comcast.net] directly for more information!” ~~www.reecesrainbow.com

This little guy has been on my heart for a while.  I’ll be honest, I want him. WANT.  If someone wants to give me the best present ever, please send about $25,000 or so my way and convince my husband.  Thanks!

I know there are more kids with arthrogryposis that need homes out there. In fact, there is one who is in desperate, immediate need!
But Grady is special to me because he looks so much like Laelia that it kills me!  They’re the same age even.  Plus he’s got fully-functioning arms!  What Lali would give for that!  And just look at that fashion sense; he and my husband must already be related. ;)  Laelia knows Grady’s picture well and asks to see “baby” when I’m on the computer.

We can pray for him and we can donate to his adoption fund (which is still so pitifully small), but he needs someone to actually adopt him.  And soon.

Kids in this part of the world are sent to institutions at around age four or five if they are handicapped. There they receive minimal care and are bedridden for life. From what I read today, once they are sent to an institution, they are at that point no longer eligible for adoption (at least in Russia). It’s sad and terrible, but not a reason to adopt.  But if you are able and willing to adopt, PLEASE email the above address. And if you live anywhere near me, I want to visit!

I found Grady’s picture on another blog at the bottom of this post. He’s just so precious!  If you are thinking about adopting someone with arthrogryposis, I will be no help with the adoption stuff since I have never adopted.  But I will be your support system.  And I will promise to answer all your questions about AMC or amyoplasia or whatever!  In fact, there’s more than just me willing to do just that!  I can name off twenty people right now who would be willing to help you know how to care for him!

I’m really hoping you’re out there, because finding him daily on the waiting list (still!) is breaking me up inside.

Laelia did better at skipping breakfast and lunch than I thought she would. She just kept looking at us like we forgot something. Then when we packed up her stuff to leave, she really was barking at us. We were pretty good at distracting her during the two hour wait before surgery. We had to meet with the anaesthesiologist, surgeon’s fellow and head nurse. Then we changed her into her hospital gown and I tried to control my tears.

They asked who would carry her to surgery and Charley responded, “Her mother,” faster than I could say, “I think I’m going to throw up.” I went to the restroom and did just that. After that I got on a mask, hair covering and gown of my own. Then I carried my confused little baby into the surgery room. I set her on the table and tried to calm her as they put the gas mask to her face. I wasn’t doing well so they kicked me out while she was still crying and struggling against the mask. It wasn’t the way I wanted to leave things, but I was about to pass out.

The waiting began. Then everyone was distracting  me, although I demanded more than peek-a-boo and stuffed animals. We waited for a billion years which actually turned out to be a little less than three hours. Then the surgeon came to tell us how it went. He said it went well and he only had to use one pin. He also decided to only work on three toes once he was in there. We’ll see how that will turn out. Then he said that she should wake up in about 45 minutes and one parent could see her at that time.

Then we went back and waited again. This time I was going crazy. I had written on EVERY form I filled out that day that I wanted to be there the second she woke up (or even as she woke up), and was terrified that she would wake up and be alone and terrified.

Then almost an hour later they called on the loud speaker for one parent of Laelia Wesley to go to recovery. So I left and went to recovery. AND NO ONE WAS THERE!!! I said, “Hello?!” in the worst, shaking voice, and NO ONE answered. Then I ran around the hall looking for another room marked recovery. Then I stopped two medical-type-looking menfolk walking down a hall and started panicking as I said, “My daughter! Where is she??! She was in surgery and now she’s not and.. WHERE IS MY DAUGHTER?!!” They directed me down a hall which turned out to be WRONG! Then I found another medical-type women (who I yelled at), and she directed me down a hall that ended at a door marked “hospital staff only” with no way to open it without a pass. And at this same exact moment I heard some little ones crying on the other side, and recognized one of those voices as my daughter. (I turned out to be right, but couldn’t know it for sure at the time.) So I began to pound on the door like a crazy woman. And I mean POUND. I tried to tear the door apart with my bear hands as my dad and sister (who finally came out to help me) backed away with a scared sort of look. Then someone came out and directed me back to the original room (now occupied with people), and showed me down a hall I didn’t see before to a window I was suppose to divine was where I waited for someone to notice me. Then I was told in a harsh tone, “Stay here,” as that women disappeared down another door for hospital staff only. I think my Christian response was something to the effect of,  ”Like hell I’m staying here.”  So I followed her and pushed my way in. Then finally a nurse asked who I was here for (and said it like I was about to kidnap everyone in the room) and I said, “Laelia,” and they took me to my baby. Once I saw her I started balling. I got control of myself before I approached the bedside of my pitiful-looking child. When the harsh-toned nurse asked if I was “okay” in a tone that spoke volumes, I went off on a diatribe, “No, your incompetent, idiotic staff…” in a cooing tone while looking at my child and brushing her hair with my hand. I pretty much told the nurse off while hushing my child. I had Laelia in my arms within moments (which was hard with the wires and leg cast) and she immediately calmed down. Then the nurse said I needed to put her back on the bed so they could wheel her to long-term recovery, to which I simply replied, “No.” So the nurse then went to another nurse and switched out. (See, I’m scary!) The new, slightly intimidated nurse asked if I would like to be wheeled into the other room in a wheelchair while I held my daughter. That’s better. I made sure to be incredibly sweet and nice to this new nurse. “I like you,” I responded, trying not to smile because I would show too many teeth and scare her away too.

I guess Charley had the same experience as me when they finally called for other family. He came out and announced himself to the first person he saw with a clipboard, and was given a dirty look as that person took off. Then he just planted until we found him. Stupid system. Retarded!

The thing I had worried about was that Laelia would freak out when waking up without her mom. Well, sad to say, I was right. Her heart rate climbed so high that she worried the staff. When I came in and she saw me, her heart rate immediately went down. When I went to the other side of the bed to pick her up, there was a moment when I was out of view and all her monitors started beeping loudly as her heart rate jumped up to 190! (100-120 is normal.) Then when she saw me again and I lifted her into my arms, her heart rate dropped down to normal. Now imagine being asked to put her back in the bed after that! But I was a good girl and didn’t kill the nurse.

Once in the long-term recovery room I noticed just how out-of-it my baby looked. But she was alive. And surgery was over. And she was in my arms.

She had a rocky start after that. Her oxygen was too low (making everything beep and a doctor run in), then her pulse was too high. Well, REALLY too high. It jumped up every single time I stopped physically touching her. At one point I put her in the bed and noticed both my legs and the arm she had been resting on were all asleep. So I had to put her in the hospital crib, but I leaned my whole self over her with my other arm under her and rubbed her tummy and chest with my free, rather numb hand. (It was a weird sensation to remove my hand from my daughter’s chest and at that same moment have two monitors punish me by beeping loudly! Her whole system was only going to behave if I was loving on her.) The thing that shocked me was how much pain she was in. She was so confused and scared. It was hard to see. I’ve never seen her like this. Her oxygen was making me dizzy and my back was killing me, but I didn’t realize it at the time. Only when Charley came back from his trip to the apartment and took over did I realize I had been standing and hunched over in that position for five hours.

After that I threw up again and had other bad side effects from worrying. I’m realizing more and more than I’m a weakling when it comes to this stuff.

She said her first words around 8:45 PM. She looked at me clearly (she had been pretty hazy up until this point) and said something like, “Ga boo ma ba?” Then her eyes hazed over again and she was crying. Then around 9:15 she allowed me to put her sippy cup in her mouth and she took a sip. Her throat burned (they put a tube down it that they didn’t tell us about) so she didn’t like that. Then they brought us some apple sauce and said she needed to get something down or they couldn’t release her the next day. So it was stressful when she couldn’t get anything (food or drink) down until eleven hours later!

The next day we got books from her room and some other foods from home and she did much better. She was able to get down the apple sauce from the night before and also some crackers. That’s all we needed to be able to give her the oral medication… that she spit out. *Sigh* But then we tempted her with two hours of Elmo (kill me), and she did even better with the medicine. Elmo got grating by the end, but since she doesn’t watch tv at home, it was a special treat that kept her attention. Well, that, and reading her favorite book a literal 16 times in a row. Charley and I switched off for that one.

Then we got to take out her IV and go home! She cried a bit in the car, but fell asleep. For some reason she didn’t like right turns. But we were so thrilled to get to take her home! When we got home we fed her more, more oral medication too, and had group nap time. It was great!Mommy, daddy, auntie Em, Grandma, Grandpa and baby all took a nap. We were tired! She was back in her own crib and was looking less pasty. Her lips were pink again and she had real clothes on! It was a sight for sore eyes.

We fought off a bit of a fever after coming home, but it left as soon as it started. She ate her dinner fine. She has sat on the couch with her leg elevated while everyone takes turns distracting her since then. For the next surgery when the grandparents are gone, I may elicit help with this. It takes a lot to distract a post-surgery baby.

But she’s doing so much better now that she’s home! She’s doing so well. So so well! She laughed! And she can focus her eyes! And she can eat! And she hasn’t thrown up once! And she’s swaying to some music right now. And she’s holding her stuffed kitty. And she’s telling us what sounds different animals make. She does cry when we move her or lift her, and she is fussier than usual, but I’m so happy with how she’s doing. I really thought after our rocky start that she would not be doing well. I was thinking the worst. I’ve been feeling her heart and it’s normal. She got a bit more out of her lungs too. She’s kinda raspy and the nurses and assistants asked me if she had a cold before surgery… um, no, I’m not that stupid. But then the doctor informed them and us that this was normal for post-op. We cheer when she can cough it out. We cheer when she eats. We cheer when she says anything. She’s pretty spoiled. And that’s how it should be.

I honestly have no earthly idea how we are going to do all this again in two weeks. But that’s still the plan. And her left foot is worst off so it may take longer. I’ll be glad when it’s all over with. But at least this next time I’ll know exactly where to go for recovery. And Charley will be the one to carry her into surgery. And we’ll know what stuff to bring. And maybe we can borrow a computer so we can give better, more timely updates. Lots of things to plan.

For those of you who don’t know, I’m doing a walk to benefit brain cancer research. The Brain Tumor Walk is going to be Sept 26th. (Between Laelia’s surgery dates… we’ll see how that goes.) I lost an aunt to this and know friends and family and family of friends who have suffered this. It’s a great cause. Laelia may join us if she’s feeling 100% or close to it. She enjoyed our CF walk.

Our team is Walking In Tom’s Shoes. Dana (Tom’s daughter) works next door to us. I heard today that Tom isn’t doing well. Originally he was going to walk with us, but now that may not happen. Actually Hospice has been called in, and things look bleak.

If you were interested in donating to our team, you can click here. My name is at the bottom of the list. Oh, and we’re winning.

Can somebody watch me?

Laelia here.

I’m a good baby. I smile and laugh and wiggle a lot. I like to play! My Jessica is moving and starting a career pretty soon. My mommy has to go back to work full time. I need a playbeesitter!

I can’t walk or crawl away so everybody says I’m super easy to watch! I don’t pull books off bookshelves or climb curtains (although it all sounds like fun!), but I can roll a ball!

I really need my new playbeesitter to watch me in the mornings from niney or tenny until around twoey. My parents have loved all my sitters very much! I think they even pay you monies!

I need somebody fast in a hurry! (By March 1st or sooner!) Please email my mommy at recordsky (at) gmail (dot) com. Her name is Mommy.

Bye-bye!

We need a sitter! Can you help?

Because of some bad experiences last time we tried to find someone, we have decided to avoid general ads or posts on Craigslist. Instead, because of trust issues with strangers (I found out I had them ;)), I want to know the person watching Laelia or know the person who is referring a potential sitter. So we are doing this by word-of-mouth referrals.

That means we need your help! Do you have a sitter you love or friend who is available in the mornings for consistent part time work? Are you interested? Do we see you out and about and you have ALWAYS wanted to be Laelia’s sitter but never thought to beg for the job before? Well perfect! Just email me, Alexis, at recordsky (at) gmail.com and we’re in business!

Details:

Laelia will be 16 months old as of tomorrow. She has arthrogryposis (joint contractures) with amyoplasia (muscle loss). We think our schedules will work out to where we need a sitter starting March 1st (or sooner if you need), Monday through Friday from 9:00am to 2:00pm. (Although if this needs to be tweaked for your schedule, let me know!) The job pays $150/week, paid every Monday. (Salary negotiable.)

You can watch her at your home (if you’re close by) or our home. (We live in Hillcrest and have three cats just to warn you. :)) And if you have kids, you can bring them along if you want too. (Pretty much whatever is easier for you.)

We’ll provide food and diapers and all that.

Laelia’s schedule is not set in stone. In fact, you can set it up to fit your schedule. We just ask that it include breakfast around the time she arrives (we should give her a bottle before she comes over), lunch sometime before I pick her up at 2pm, a nap if she looks tired somewhere in there (or none if she’s fine) and twenty minutes of stretches. Her stretches are for her tight joints. I have taught ten people the stretches and they are somewhat easy to learn.

You also have to keep an eye on her left shoe. It’s called an AFO (ankle foot orthotic) and she has to wear it 24/7. It tends to slip. (No big deal if it does.)

Our Quirks:

We treat Lali as if she is the cutest thing alive and think she’s adorable all the time even when she’s being a pill. (Yes, we’re *those* parents.)

Laelia isn’t allowed to watch television. Laelia isn’t allowed around men we don’t know. Laelia isn’t allowed around faith healers (long story). :) We don’t allow any physical punishments.

Laelia likes peek-a-boo, being held upside-down and doing things herself. She likes to rough house. She always wants to do things by herself and that includes turning pages or reaching toys. (Try to avoid putting everything closer to her or making everything easier for her.)

Laelia IS allowed to have her hair pulled and be picked on by other kids. She’s not glass. Right now she is around six other kids (nine on Mondays).  

Okay that’s all I can think of so if you have any other questions, please email me! 

And if you aren’t interested, live a million miles away and know of no one to help, you can always help by praying! I have loved all Lali’s sitters, but hated looking for them. It’s a big stress! We can use all the support we can get! 

Thank you!!!

Rules for doctors: (deep breath)

#1: Look in my eyes when you speak to me.

#2: Do not make me ask three times before you repeat what you told your nurse in a quiet voice concerning my daughter.

#3: Never tell me to “relax.”

#4: Never make your patients wish they had not come to see you.

#5: Give hope, even a little bit. Don’t let people leave your office without some small measure of hope!

#6: Never say a child will never do something. For all your years of schooling, that is the stupidest thing I’ve ever heard.

#7: “Faith” is not “denial.” Don’t mistake them. Don’t feel the need to shove hard truths at a patient because you believe I don’t know the severity of my child’s case. I’m hopeful not stupid, you idiot. 

#8: Don’t chuckle like we’re friends because I’ve started to cry.

#9: If you don’t have a disabled child waiting for you at home, then you don’t know. So don’t say you do.

#10: Don’t tell me my child won’t cry during a proceedure and then when she does cry, tell me, “It doesn’t really hurt.”

#11: Pretend for a minute that I didn’t sit next to you in medical school for all those years then try repeating what you’ve said in a way that an educated, intelligent person can understand. (And I’m both those things so don’t treat me differently.)

#12: Just sign the &#%@! form I hand you; don’t tell me it’s not worth your time. I didn’t ask you how expensive it was. I just saw it as a small hope and you refused because we have “plenty of time” to try the stuff that’s not working.  

#13: Don’t be patronizing!!!! 

#14: Do not treat a child like their worth is the sum of their workable body parts. And that their worth of your time is the sum of their fixable body parts (of which you’ve determined my daughter has little).

#15: Don’t make your patients work so hard at forgiveness and understanding; try a little education in the area of grief and bedside manner.

(and exhale)

I saw two callus doctors today, and my experience was not that great. One largely ignored me while smiling. The other thought I was in denial of the severity of my daughter’s condition and took the opportunity to tell me that Lali has severe joint contractions and muscle loss that will NEVER go away, and I needed to deal with that fact instead of searching for new splints or braces. They wouldn’t sign my Dynasplint form. They told me to have our OT make the static splints more harshly to where they caused “red marks on the baby” and that would work just as well. (I’m not even joking.) They would approve the Dynasplint system “later” when she was “older.” They said they didn’t want to put stress on the growth plates. I asked what exactly the growth plates did that prolonged stretching would hurt, and I was told that “a growth plate is a plate where baby grows.” (Duh.) So, trying again, I asked if that meant that I should stop stretching her. “Oh no, stretching is VERY important. You must continue doing it!” So why can’t a splint stretch her? “Because a splint is not the same as mommy, and the splint wouldn’t stop stretching when she cried.” BUT WOULDN’T I BE ABLE TO TAKE THEM OFF IF SHE CRIED??? WHERE DO YOU THINK I’LL RUN OFF TO WHILE SHE’S WEARING THESE???

Then they told me that the stretches were not “that bad” so I should do them myself.  Not that bad, huh? How many times in your life have you stretched your child? Yeah I thought so. So shut up!

The dumb thing is that they may be right! They may have the answers. Their plan may be best for Laelia. But I don’t think so. Why? Because I don’t trust them. And that’s scary. They have set themselves up as opposition and I have too much of that already! For example, to get anything done, I have to go through my insurance (opposition), scheduling doctors (opposition), doctors themselves (opposition), the system (opposition) and manufacturer’s costs (opposition) only to get something that gets starred at by strangers (opposition) and is hard to use on a small baby (opposition)! It’s no wonder why parents of special needs children feel all alone and depressed in this epic battle for their child’s well being! Why add to that?!

I have learned something very important: Parents are the only ones who have their child’s best interests in mind! Doctors do not have your child’s best interests in mind! They have time issues, other patients, greed and busyness to distract them. Plus, and this is important, THEY DON’T KNOW! They just don’t know! Kids like mine are always surprising these kinds of doctors who put all these heavy limits on them.

*sniff* Dr. M told me to “relax” not because I was angry or even speaking, but for coming in in the first place.

Proverbs 13:12 says, “Hope deferred makes the heart sick.” And my heart feels sick. I was hopeful that I could put these stretching splints on her (that my mommy intuition knows would work well for my daughter) and then I wouldnt’ have to hurt her every night. Imagine that! Just hanging out with my daughter! 

The one doctor actually scolded me for taking the advice of a sales person (said with disgust) instead of my own therapists. When I hadn’t even seen my therapists yet so they had no advice to give (besides what they always tell me: stretching=good), and I hadn’t really talked to a sales person, only gotten some brochures to look at and told how they worked. No one twisted my arm. Why do doctors treat people so badly? Why am I still crying?

Sunday I’m doing a lesson for the kids at church on forgiveness. So I’m making an active promise to forgive these two ignorant doctors right now. Before this turns to bitterness.

So I have good news! We discovered on Saturday that there is a set of splints that do stretching! The company that makes them is Dynasplint Systems Inc. Their ad says, “Regain Your Range of Motion!” and “Stretch Beyond Your Expectations!” The consultant I talked to convinced me when she mentioned they were, “Pain free!” (Music to my ears!) It sounds wonderful (although probably quite expensive) and perfect for our situation! And the way this all came about is a rather interesting story.

It starts with Charley’s job. Charley (you all know him as Charles, but, hey, I met him in high school so he’s Charley to me ;)) works for San Diego’s Union Tribune. That’s a newspaper. You know, it’s like a news report delivered to your door in paper form. Still with me? Here I’ll help you out by providing a link: LINK!Okay, so it’s quite antiquated. (Although maybe the link was insulting to your intelligence. :)) Believe it or not, the employees at the newspaper are not oblivious to the fact that the newspaper has fallen on hard times. We got our official letter from James Copley, the owner of the Union Tribune, and have been warned about the hard times ahead. In fact, it’s looking like many people are about to lose their jobs (possibly by the end of the week). Many more will take pay cuts. And the newspaper itself is up for sale. Charley is hopeful that he will retain employment since he works in IT (the computery side of things). However, we’ve had our 401K matching cut off, our insurance go way up (along with copays), and there are a couple of months coming where employees will have to take a couple days per month of leave without pay. This means that our insurance is pricier and we’re starting to worry about losing it all together. Besides what that means for Laelia (since she is dependent on this insurance for medical care and therapy), it also means that we are starting to use what we have while we have it. Which led us to make dental and eye appointments out of the blue. (Even though I hate both of those things!)

Which leads me back to my story. So we went to the eye doctor Saturday to use up anything our remaining insurance would give us. Yes, I have astigmatism. No, I don’t wear my glasses like a good girl. Yes, I should go to the optometrist. No, I won’t! It’s sad considering that I’ve worked at three libraries in my day, and Charley is really disappointed that I never had a sexy pair of librarian glasses. (He was really pushing the upturned frames with the pearl chain. Ugh.)

So we were getting ready for our local (walking distance) optometrist appointment when we realized that neither one of us had gotten a sitter for Laelia. So we dragged her along so she could make friends with the nice optometry people. Well I put her on a chair where she could show off her excellent balance, and one optician complimented her good sitting abilities. So I told her about the Bumbo chair that I got at my baby shower. Those things hold the baby in place so they learn to sit up. Well then she mentioned that it wouldn’t work with her daughter, what with her casts and all!

Turns out that the optician, Holly, had an adorable little five-month old with club feet and spina bifida. So we learned about her little one, Annabelle, while Holly and Laelia played together. Laelia got to be an encouragement to someone, and that made me very happy. Laelia was on her best behavior too! … Well most of the time.

Then a patient came in the office for contacts or something and Holly introduced us. Her name was Kim and she was an ankle and foot sales consultant for Dynasplint. She ran back to her car and brought us flyers and brochures. They have splints for everything Lali needs: elbows, wrists, knees, fingers, even shoulder rotation! What caught my eye was the knee splints (since we tried those awful KAFOs that slipped and didn’t work because we had the Dennis-Brown bar in the way). I mean I can’t tell you how many times I have wrapped up her knees in stockinette as make-shift knee braces when they had these wonderful things available!

Dynasplint Knee Extension Splint

So that’s how we found out about these nifty gadgets. They don’t just splint your joints, they stretch them! I sure hope we can get these with our insurance or something! Like I said in a previous post, the more we stretch her the better off she is! And these would be like continuous stretches throughout the day! Of course I wouldn’t cover her whole body with them since she needs THEM ALL. But I would just try to get some for her knees (or maybe just the left knee if it’s too expensive). Or her right wrist that we’re having problems with. Or her inverted shoulders! Those are her most painful stretches! (I hope they have all this stuff available in infant sizes!)

Right as Kim was leaving she hugged Holly and said something about how she knew God brought her here for a reason today.

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.

1. Construction - I hate construction. They are building a huge apartment building next door and the noise wakes my baby up in the middle of EVERY FREAKIN NAP! I asked how much longer they would be in construction and was told by a nice, thickly-accented gentleman, “Ten minutes,” which was followed by smiling and lots of nodding, on both sides. Charley found someone else and asked the same question. He was told they had three more floors left to build. Three more floors! Charley said if the thing gets any higher, God will have to strike them with language confusion. From our conversations, they’re already there.

2. No Daycare - We still haven’t found a daycare. I leave for work at 6:30 in the morning and get home at 12:45 Monday through Friday. I have two nannies right now: one leaving this month to have her baby next month, and the other staying through as much of the summer as her pregnancy will allow. Hopefully her baby will not be an early bird, since every time Laelie gets a friend, I lose a sitter.

My hope was that Laelia would be in a daycare where she could be socialized. I know kids raised with other kids pick up language and motor skills faster. Plus Laelie could get a great immune system from all the free-floating germs. But most importantly, I would love to see her in a group of mixed friends who grow up with her for a few years so she doesn’t feel alone or ostracised. So if anyone knows anything about a daycare willing to put in some extra time with a special baby, we’d love to hear about it.

3. Looking for Daycares - Well I called every single daycare off a list within ten miles of my zip code, my work’s zip code and the route to and from work. Then I Googled more and tried them. I was declined by every single one. If I found something that took her age group and whose waiting list was shorter than six months, I only then told them about her special needs. It got me so depressed when I would hear their voice change, get accusations of, ”That’s not fair to the other children,” or just pass me off to their manager/supervisor who would get me off the phone.

4. The System- I then signed up with a daycare finder organization. They said they couldn’t find one single place for me. They then said they were fairly new and to try calling around (which I had already done). So I next signed up with a government daycare finder to find me federally funded daycares. They couldn’t help me. Together We Grow was mentioned, but they won’t take my daughter. They did give me the number for Easter Seals and told me that even though they didn’t think Easter Seals did this sort of thing, maybe they would have some advice. Then I bugged the YMCA, First 5 Advocacy and Exceptional Family Resource Center. I’m already in the YMCA’s system and the lady there was really kind. She is even looking for old contacts she used to know.

But pretty much everyone has “helped” by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me the number of the first person I contacted that begun this insane process in the first place.

But moving on with my points of contention…

5. KAFOs - They still don’t work. Enough said?  

6. Mean Anonymous Emails - See previous blog, “Cyberbullying.”

7. EMG Testing- An EMG test is when they stick a thick needle into your muscle for the sole purpose of shooting electricity through it in order to measure how bad it is. Laelia’s EMG is scheduled for July 16th. Charley and I decided that he should go without me. The test will only spit out depressing results and require calming down a Laelie-faced pincushion. I realized I didn’t want to know the results. We’re only doing this as one more hoop we must jump through anyway. This isn’t leading to a cure. This will be the first medical thing I will have skipped. I have mixed reactions of relief and guilt.

8. OT/PT - I called last week to cancel my appointment because baby didn’t look like she was feeling well and needed to sleep through it. This led to my accidentally getting kicked out of their system when they cancelled all of my physical therapy appointments from now until the end of time. Effectively also losing our time spot which was then filled by other people. And we realized that our OT had paperwork that had not gotten to our insurance. Which led to OT also being cancelled. Oops. So for over an hour I’m waiting at Children’s with my Early Start representative who had come this one and only time to view Laelia’s therapy sessions. *groan*

I spotted a woman who looked unfamiliar (but of course I’m never in the waiting room all day), wheeling her son out of the therapy evaluation room. Her son had the tell-tale skinny arms and legs with crooked wrists. He was also holding up his end of the conversation with his mom, so probably not mentally disabled. Thinking it might be similar to what Laelie has, I asked the woman what her son’s diagnosis was. She immediately stopped walking and looked at me like a starving person looks at a steak. She tearfully told us, my empathic Early Start Rep and I, all about how her son was born perfectly healthy and whole. She was rudely told by an impatient doctor (over the phone!) that her son had a very rare condition that hadn’t been seen in Children’s Hospital since 1976. He would go through these terrible stages next and there was no cure. Sorry and have a nice day.

Unlike Laelie who was born looking the worst and has slowly been straightened out, she has a son who went from running around seemingly healthy and whole to slowly losing abilities and becoming crippled. Not only that, but she was from El Centro and had commuted a long way to try and get seen by a physical therapist since there were none in her area. We stayed and talked. I couldn’t help thinking that this person needed to spill out her heart. Later as I was dealing with paperwork I thought, “God, did you screw up all of my therapy appointments, putting me through weeks of paperwork hell, just so I could encourage one person?!” Maybe.

She told me about her son. She told me how she was forced to become a stay-at-home mom because of her situation. She told me how she now fully believes that it takes special parents to raise special kids. This is something I’ve been told a lot but actually never believed. I think kids are lucky to get special parents. And this kid was definitely one of the lucky ones.

9. IHO - In Home Operations has me on a huge waiting list. I have an advocate who called up the IHO people with me so they could hear what I go through. I was told that IHO is like a hospital waiting room. The only way to get seen is if a bed is available. The only way a bed is available is if someone is better (gets magically cured) or dies. The IHO lady informed me that we are waiting for a LOT of people to die before Laelie will get seen. And then she may be denied. Then when I asked if there was any way at all to get higher on this list, I was told that my baby “wasn’t that bad,” and that there were other people in the world worse off than me. Then she made if very clear that I was wasting her time. When we got off the phone, my advocate could only say, “Wow, I’m so sorry. This is a dead end.”

Having an advocate has been encouraging in some ways. I found out that I discovered a lot of programs that most people don’t find without help. I also found out that I had done almost everything the advocate would have had me do. Now it was a matter of going through it all and doing it all again with the advocate on board. Mostly this has gotten me nothing, unless you count advocate sympathy. My poor advocate seems to be a bit discouraged now. I haven’t heard back from her in a while.

10. People Who Shouldn’t Work in This Field - Don’t work in organizations that help disabled kids when you have no empathy whatsoever toward them! You end up saying really stupid things. Like when I call to ask one question, you interupt in order to rattle off a list of your organization’s by-laws. This is a big filibuster because you don’t know how to help my child. Well she doesn’t fit into the system. I get that. If you aren’t willing to help me figure out what to do next then just say so! And please PLEASE don’t follow up your spiel with, “It’s not like Lee-la is suppose to be running around at this age anyway.” Oh really? Then why am I even worried about her future? Thanks, you’ve really cleared that up for me. Now I can get back to my bon-bons and reruns.

*cough*  

So it’s been a hard couple of weeks. Just had to vent.

Thanks, everyone, for the emotional support. I’ve gotten lots of emails and phone calls from family and friends today and I appreciate it. It was May 15th, 2001 when Mom was killed in that awful car accident, leaving Laelia without a grandma. I have missed her anew while struggling as a mother myself.

Thanks also for the addresses and phone numbers. I’m waiting for them to magically coalesce into a working address book. If you haven’t sent me your address or phone number yet, please email it to recordsky (at) gmail.com.

Today baby and I went to Charley’s office and took a little tour. He works at the Union Tribune in San Diego. We met many of Charley’s coworkers and Laelie did a superb job of convincing them she was a calm, tractable baby. It’s all an act! :) As I’m typing this, she is busy fussing in her crib. The child is allergic to sleep! Of course the more of a routine we set, the easier she is to put down. We now read to her every night. I might even have a picture of that… here’s two.

~

Earlier today I had the ickiest phone call at work. I work in customer service and had a lady named Carla bellyaching because she had received the wrong product in her mailbox. She is getting to keep the product she received accidentally AND she is getting the product she actually wanted for free AND she’ll get it all in her time frame. Well the woman just complained and complained anyway. And then she announced, rather awkwardly and abruptly, that she was disabled. Having to deal with extra stress was hard on her. Because she was disabled. And she hoped she wouldn’t have to go to the post office to pick up her mail (why would she?), because it’s hard for her to walk the few blocks and stand in the line. Being disabled and all. And we should really feel bad for this mixup because she is disabled. Did I mention she said she was freakin’ disabled?! I wanted to say, “Hold up, you can walk several blocks and stand in line with just a little discomfort? So how exactly are you disabled, besides in the head?”

Oooh that woman made me so mad. Of course she got off the phone happy and satisfied because I’m darn good at what I do, but she still made me crazy. She was trying to use her disability to get her something. I mean just because you’re disabled, doesn’t mean the world owes you! I would have done the same reparations for any customer who received the wrong product! I felt like she was trying to get something else out of the situation because she happened to be, as she claimed, disabled in some way. Well I’m sorry, there are some people who can’t walk to the post office and stand in line. Period. Some cannot even lift up their arms to Mama to get held, let alone pick up a phone to rant and complain.

In the fairytale, Record of Lodoss War, there’s a character named Leylia (same pronunciation as my kid) who gets possessed by the evil Grey Witch, Karla. (Yes Karla, like Carla.) If my Laelia ever got possessed by the Carla mentioned above, her evil act would be to demand things for herself because she has a pitiable disability. I promise to raise my child to never behave that way! I will do my best to teach her to have a positive outlook on life, and not to beat people over the head with her condition. And if I ever catch her trying to, I don’t know, get her StarBucks faster because she’s disabled, I’m going to assume she’s been possessed by Carla’s outlook on life, and a major intervention would take place! So I’ve come up with a new condition called Grey Witch Syndrome.

Grey Witch syndrome = Letting your disability disable your life.

Don’t let the Grey Witch around your kids!