Laelia Sky Wesley

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.

Can I get a bunch of people together to track down and cover with goo all the bullies that have written me lately? Yes, that is what justice calls for, a good gooing. Most of them are ads promoting themselves as friends commenting about Laelia, then if you approve their comment they torment you with endless ads for RING TONES!!! Or worse, porn. But there are also bullies who by sheer cowardice write mean things to me through this site or youtube, thinking that anonymous messages about how my daughter is ugly or “deformed” are funny. That’s cyberbullying, kids, and McGruff don’t like that.

Speaking of cyber-related things, most or all of you have probably received an invitation from me to sign up for Yaari.com. This is a shameless bit of spam that sends out emails to your entire address book if you sign up for it. The email guilt trips people into thinking that if they don’t click on the “Is Alexis your friend?” link then I will receive this information and think they hate me. It follows up the email by saying, “Please respond or Alexis might think you said no. :(”

I fell for it after receiving a message from a co-worker who was leaving the company. I thought it was a way for him to stay in contact with everyone, so of course I would sign up (to his Indian love site? Okay, Jon, whatever) and be his friend. Well, just like he didn’t send out all those messages, I didn’t send out the subsequent mass mailing either.

Actually I have the perfect punishment for cyberbullies! Tie them to a chair and force them to feed my daughter peas and carrots! It’s the most disgusting/adorable thing you’ve ever seen. She recently learned to spit them out of her mouth a good foot’s distance. (She once got me right in the face.) Then have those dumb cyberbullies call different government assistence programs and daycares… ugh, no don’t do that. I’m not that cruel.

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

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

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

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

I hate this!!!

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

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

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

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

I’m free!!!! No more Scope!!!! 

So lately I’ve been more and more convinced that our San Diego Scope located in Children’s Hosptial is deliberately trying to get us to go elsewhere for Laelia’s needs. There has been only one time, the very first time, we have received something we’ve needed for Laelia’s feet or legs without getting paperwork lost, appointments forgotten or excuses for not even starting on the construction of some orthotic piece when they were suppose to, etc. And that first time all they did was pull some shoes off the wall and stick them on Laelie’s feet. And they didn’t even work! Those first shoes were the worst experience of our parenting lives, but we couldn’t convince Scope that they were crap until torturing our daughter’s feet for that whole first week. (That’s when we fired our tech and got the manager involved.) Then they ordered something else but didn’t work on it or get the paperwork in for so long that our daughter actually needed to be recasted for weeks because her feet were reverting to their original deformity!

Remember getting your braces off your teeth in high school? Well now imagine you were given a barbed wire retainer that doesn’t even work. Then after a week your teeth have moved back so much that you need braces all over again! Ridiculous right?! I got appologies over the phone that seemed sweet and sincere, but the problems kept happening.

Then it dawned on me that maybe they were deliberately trying to get us to take our difficult child elsewhere. (Paranoia for me doesn’t fall far from the tree. :)) I mean if you think about it, they wouldn’t be able to refuse us service outright just because Laelia’s care is hard on their work schedules! We’d go to the press so fast their heads would spin! So instead maybe they did stupid little things like confirm an appointment for a time they knew I’d be at work, or say they were booked for the whole week when my child was in pain and needed a simple adjustment, or sigh audibly when I needed to check on a prescription for shoes that they’d forgotten about. And the receptionist came across totally rude, but if I called and got another person, they would *always* forward me to this person without an explanation.  

Then the icing on the cake happened when I got a call at work from my distressed husband who was rebuffed on Thursday from getting to see Scope after taking the morning off work to do so. They said they called but there was no message or missed calls on my cell, his cell or anything on our home answering machine. I was furious. I told him to march back in there and demand to be seen. (It was like telling a kitten to roar.) Then I did one of the last options they left for me: I complained. Instead of going to the manager there, I called up the boss at the coperate office. I outlined all the crap that’s been happening. I was totally done with them. Yeay for me, right?

Only problem was that they got the complaint while my husband was still there trying to smooth things over. Yeah, he loved me for that one.

Then the hilarity insued. I don’t know why this became so funny. Charley calls me at work and says, “You’re fired.” Me! Not dumb Scope but me! So I replied, “Okay, I’ll step down on the condition that we pretend I still wear the pants around here.” Aw, good times. But my sheepish grin did nothing to quell the looks from my husband. So Mr. Public Relations effectively took over Laelia’s Scope dealings. He said he loves me too much to let me rot in jail after I go crazy all over Miss Thang (i.e. the receptionist).

Now Charley gets to deal with Scope’s insanity. I feel like I spun $1 on the Price is Right wheel and won my dream vacation. :) And since Charley can come across stoic whereas you can read my face like a book, it has the potentional for a sitcom. “Sorry Mr. Wesley, please please don’t call your wife on us.” *insert laugh track here* Now when they take four weeks to remember they were suppose to be building Laelia’s AFOs, they will get Charley’s gentle disapproval instead of my demands for competency.

But if I can digress for a bit, the real trick is to appeal to the manager’s inner enginer. KFOs were originally his suggestion and creating something to work with her feet and knees was his baby. Sometimes when I mention that there is nothing out there that works with both her knees and feet at the same time while utilizing the Dennis-Brown bar, I see this dreamy look on his face and know his thoughts are of a younger version of himself building some elaborate setup in his garage over rock music. See, working on my daughter’s orthotics will be fun! It’s arthrogryposis, baby, not some boring sports injury.

But seriously, the bottom line is that we have a little girl here who gets bruises and broken skin from orthic shoes that aren’t even working. We have been told, “But you’ve got to understand that her care is expensive and we just recently made those other shoes so you have to give us a break.” I don’t think any of them would leave their children with this:

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!

Screwed. We’re screwed. Totally screwed. After seven months of navigating the mess that is our system and drowning in denials, we finally sunk. Our child falls between the cracks. No organization or government assistance can help us. Officially.

What happened was that I decided to reapply to everything I had already been denied for or hadn’t heard back from. I was starting to get my second round of denials when IHO contacted me. I had already filled out one application for them and never heard back so I filled out another and included a faq sheet on AMC, a personal letter, Laelia’s picture as well as the filled-out application complete with footnotes. Well I can now announce that our mystery has been solved. IHO was the answer. It stands for In Home Operations. According to IHO there are two ways for a child like mine to get a MediCal waiver: Regional Center and IHO, the later requiring a six months to a year waiting list to even start the process (something we could have done seven months ago if we had known anything about it). We would have gotten the Home Community Based Model Waiver. That’s what the other little boy with arthrogryposis got years ago as we finally discovered. The wait to get the waiver would have been really long. There would have also been a wait to get MediCal after we had the waiver. But then after all that waiting we would have used the waiver to get MediCal and used MediCal to get into Together We Grow and used Together We Grow as an anchor between us and sanity by relieving us of this burden of caring for a disabled child and doing her painful stretches.

Only we can’t. In the last few years MediCal changed and Together We Grow changed as a result. I was told that nurses aren’t required for Laelie’s stretches or splint/brace care since anyone can be trained to do that. But anyone can be trained to use a feeding tube or give oral medications too! But unless Laelia is on consistent medications or needs to be fed a special way then there is ‘no room for her in the inn’ so to speak. And don’t think any other daycare will touch her. Too many splint changes and stretches and orthotic shoe care for your typical daycare. In other words, too special for daycare, not special enough for special daycare.

A lady came to my home to explain all this in person and offered me counseling to cope with it in the same breath. I took the news about as well as I first took Laelie’s diagnosis–stoic then devastated.

I’m still starting the process of applying for IHO’s waiver to see if I can get it next year and maybe use it for something else. I am officially at the bottom of the waiting list. I’m also going to apply for Together We Grow. The lady that came over to explain how screwed we are said that what I was trying to do was “ground breaking.” That means I will need to fight for this hard and not take “no” for an answer. My daughter does not fit into anyone’s box. Arhtrogyrposis isn’t even on anyone’s radar. So everything I do, I do tooth and nail. 

But what no one realizes is that I have zero energy to deal with this. Dealing with all this crap has been ten times worse than dealing with her disability. Why complicate someone’s grief with all this? And in the end it was all a waste? That sucks!

Laelia started to outgrow her infant car seat so we bought her a new, bigger one that arrived in a big box. Charley and I wordlessly exchanged a look and then raced to crawl inside it. It was like being a kid again, only this time our legs dangled out. It was a safe feeling. We camped out in it in the middle of the living room driving the cats crazy. It’s funny how the simple pleasure of crawling in a big cardboard box can make a day better.

I’m taking the rest of the week off. Not from work but from dealing with all this. I don’t have my OT auth for this week and today she missed her appointment because of that. I’m letting her therapist deal with it. She also still doesn’t have her AFOs and I have no idea where we are at in that process. But I’m not dealing with it this week. I have no earthly idea what we’re going to do now. But I have to take a step back and grieve a new loss–the loss of easiness. The loss of smooth sailing. The loss of simplicity in raising our daughter with a consistent daycare and government assistance that is just an application away. The loss of the normalacy I believed I could achieve with Together We Grow caring for my unique daughter while I was building my career. The loss that comes when you reach out for something just out of reach and come up with empty air in your fingers.

Then I can fight again.  

I’ve sat down several times to blog about this bad week. Every day this week I have sat down to blog, stared blankly at the screen, cried, got up to walk around, sat back down and eventually just abandoned the whole endeavor. So I had an epiphany today (Thursday): I’m just not gonna blog about it–not the bad stuff anyway. But the long and short of it is that I had some health problems for the past two and a half weeks (girlie problem), I had major hassles with several organizations and baby decided she would start screaming at night because she hates the world… or is teething…or has an ear infection… or is developing her mutant ability to break the sound barrier. This budding super power caused our not-so-nice neighbor to scream at little Laelie from his apartment window to her nursery window, which made her even more upset and sent my mood from distraught to murderous. Let’s just say it’s a good thing I didn’t see his face or which apartment he came from. The coward doesn’t realize I have a sniper in the family. No seriously, I do.

As for organizations, this week we got denied by several more. Genetically Handicapped Persons Programed denied us straight off. Our particular form of arthrogryposis hasn’t been linked to a gene even thought the distal form has. Some other program I applied for sent me a brochure for Genetically Handicapped Persons Program instead of helping me after just getting denied by them. (See the “Ask your mother” blog to see what I think of that.) Let’s see who else this week… we were denied for Healthy Families who said they would try to look into stuff but didn’t call back and also CCS (California Children Services) who called to say, “We can help you!” And right when I started to get excited they continued to say they could help with something we didn’t ask for help with, but not with their program that could get us into Together We Grow. They would, since we were denied by MediCal, put Laelia in their therapy program which effectively takes her out of the care of her current therapists. I don’t think that’s the best option when we have the best therapists. It sounds like they outsource to one of our therapists anyway when they aren’t competent in one area or another. So… you know… Apparently they didn’t even read the letter I sent them that they are suppose to be responding to, and, to further prove their literary deficiencies, they mispronounced my daughter’s name several times. Usually this doesn’t bother me since I picked the most beautiful, least pronounceable name I could think of, but I got ticked off when I was informed that parents don’t have much say in their own child’s care through this program, but we do have the option to “complain to a supervisor at any time.” And, when I called my OT, “Dr. Jill,” which I call her occasionally, the lady added, “Just for your information, it’s not Dr. Jill so let’s just get that clear, she is an occ-u-pa-tional ther-a-pist, not a doctor.” I almost responded, “Sorry I don’t defer to a person who fails at basic reading comprehension! It’s Lae-li-a. If you don’t know how to pronounce something, it helps to sound it out.” It’s not like I don’t appreciate the help, but I have to do what’s best for my daughter. And I want the final say in all things pertaining to her care. Period.

So that racks up the denial list to:

*Genetic Handicapped Persons Program

*Our own insurance

*MediCal

*CCS (they have another program that could help that we got denied for)

*SSI (twice-once in person, once over the phone)

*Healthy Families

*Regional Center’s MediCal waiver (twice)

*iHSS

Uproarious I know. I took the three denials I got this week pretty hard. But since this is my nonblog, I’ll skip the details.

I also talked with another mom who’s daughter has arthrogryposis very similar to mine. She’s unmarried (and is astute enough to stay that way to get the support for her child) so her advice didn’t quite match my situation, but it encouraged me to keep going.

Kristin, Emma’s mom, also kept tabs on me this week. It was nice to have the support. It’s so cool that several different people I’ve never met are looking into new avenues for Laelia to get MediCal or help of some sort. No matter how discouraging it is to have a child who falls between the cracks of the system, I’ve come to realize that moms of disabled kids understand what I’m going through even though our situations are so different. And they get mad with me. Yeay for group outrage!

Okay so this became more of a blog than a nonblog. But whatever you call it, it fulfilled its purpose because I feel better. Thanks again Bolt and Fjord for this website.

I am so mad! I just got a letter from iHSS. They are denying us, without sending someone over, because we need to be approved by MediCal in order to receive iHSS! The only reason we’re doing iHSS is because we were denied by MediCal!

It’s our government’s version of “ask your mother.”

Hey Mom, can I…

Ask your father.

Okay, hey Dad can I…

Ask your mother.

Mom, Dad says…

I’m busy, you need to have your father deal with this.

Dad, Mom says…

I said to ask your mother!

Acchhhhhhhhhhhhhhh!

I am so sick of getting doors slammed in my face! Can anyone think of another way to get a $#%@*& MediCal waiver?