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.

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!

Baby and I had a need for some help last Thursday afternoon, but realized that we didn’t have anybody’s contact information. I had accidentally thrown away my pile of addresses and phone numbers the week before. I’d really appreciate if everybody could email me their name, phone number, mailing address and email. (Even if you’re family! Don’t think that just because I *should* know your contact info means I *actually* know it.) :) 

You can email the information to me at:

recordsky (at) gmail.com

Last Thursday I was still dealing with a medical issue and ended up passing out upstairs while baby was sleeping downstairs. Charley had to come home from work early and take care of us. I would have called someone but that’s when I realized that I had thrown away my contact list when I cleaned up the other week. (I try to clean my apartment at least once a month because I’m working towards housekeeper of the year.)

I promise to keep everything more organized this time (and out of the trash). My original filing system was not that great (i.e. looked like trash). It consisted of a pile of envelopes from letters that people had sent me over the years–that I kept for the return addresses–with phone numbers attached by sticky notes. Some people had moved, but since the pile was anachronistic I didn’t know which addresses were updated and accurate. This time I promise to keep all my addresses and phone numbers nice and tidy. Maybe this Christmas I won’t have to call up Charilyn and ask for everybody’s addresses… again.

PS: The “(at)” in my email address above is really “@,” but I’m trying to avoid having the Internet cooties scan my email and spam me silly. 

Thanks!

I’m making my sick mommy feel all better.

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

My new dresser is finally built!

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

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

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

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

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

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

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

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

Regional Center says Laelia can’t get a MediCal waiver through them. Will not happen. Now or ever. If she had Down Syndrome or Epilepsy or something like that then she’d be eligible. This last avenue is definitely officially as of today a dead end. And that’s bad considering this was her last option.

Regional Center did accept Laelia due to her developmental delays and will look into any options she may have to get MediCal, but they warned us that they didn’t know of any. They will also help with our therapy copays starting today. Every little bit helps, but really we need $30 an hour for Together We Grow more than we need $30 a week to help with therapy. I wonder if Tammi and Megan know they’re worth $30 an hour!

I see the closed door, but I don’t see a single open window.

Charley is getting me a list of state representatives and congress people, etc, to mail some letters about our situation. I have written two letters to my insurance person (who has totally blown us off) and another to Aetna’s main office when I figure out where to send it. 

I hate feeling like my little girl has fallen between the cracks.  

My complaint the other day to Scope came to fruition. I got a call from the manager who apologize again, and then I apologized to him for the way I came across (it was a regular love fest with both of us apologizing and promising to work better together in the future). He admitted to overlooking Laelia’s shoes and forgetting her paperwork. I have a feeling that won’t be a problem in the future. He promised the KFOs that we requested from Scope on February 15th would be ready Friday, April 4th. And that’s good because her orthotic shoes (that she’s outgrown) put a hole in her foot this morning. 

On top of everything else, my boobs hate me! They have stopped producing breast milk. I was sick this morning and had huge knots in them. Getting mastitis for the third time is the last straw!!! Although this last time I caught it early and so far have only been just a little sick, but my milk supplies have suffered. Both sides only produced one ounce of milk between them after I pumped for two and a half hours this morning. We bought some emergency formula last night so we’ll be okay. I cried all morning feeling I’d lost something precious. 

Charley and I held each other and comforted each other today. We put Laelie in the middle and hugged and hugged. I love my little family so much! I sometimes worry that if we can’t get into Together We Grow or some daycare that has nurses or therapists doing her stretches, what it will do to our marriage. Not that we’d ever get divorced, but I mean our happiness wanes as we deal with our baby crying after painful, 30-minute stretches everyday. I’ve been grinding my teeth; Charley has been getting unbearably numb. It just makes everything harder. Laelia continues to be a joy, but today after I stretched her and then held her as she cried, I was thinking that this would be nothing for a nurse, but it’s terrible for a mother.   

I’m not sure what political statement baby is trying to make here.

Well speaking of politics, I have decided to write to my congressman about Laelia’s situation. I am also writing an official complaint to Scope about her KFOs and braces being unconscionably delayed. I’m also writing another letter to Laelia’s insurance case worker about covering nursing care. And if I don’t like any replies I get back, I’m going to the Dept of Health. And if all that doesn’t work out, onto the local news media!   

Well some of those things are only the plan if Laelia is not accepted by the Regional Center for a MediCal waiver that will get her into Together We Grow. Oh and our Regional Center appointment got changed again. Now it will be Thursday, April 3rd. If that doesn’t work out, then it will be the 14th.

But I’m not backing down! (This from the person who was too scared to change her major in college because the registrar was a meanie and she was afraid to complain.) No more Miss Nice Mommy!

We’re still in casts. For those of you who don’t know, thanks to three mistakes (two on our insurance’s end by losing paperwork and never returning our phone calls and one mistake on Orthotic’s end by scheduling an appointment for cast removal they KNEW braces weren’t ready for) our kid will be in casts ONE MONTH longer than medically necessary. We showed up to get the new braces only to be informed that they were not made and wouldn’t be ready for two MORE weeks. We also were informed of an appointment we don’t recall making with orthopedics for recasting (painful and unnecessary if people did their jobs) on Monday.

Her legs are stuck in an L shape while what muscle she has slowly atrophies. This puts future walking attempts, heck even leg straightening attempts, way behind schedule. She began casting when she was three weeks old and tomorrow she turns four months old. 1/4th of her life in casts will have been totally unnecessary as we wait on incompetent people! How ridiculous!

So I have set my goal at 4. Four second opinions for my daughter’s care. We have one appointment set up for a couple of weeks from now. So three more. If that means driving to LA (which it most likely does mean) we’ll make it happen. My orthopedics doctor is nice and professional and experienced, but not working for us.

I don’t know why we don’t have AFOs and instead are only offered braces. I want KAFOs even. I want the legs casted straight if we are doing so much casting. I want doctors to LISTEN!!!!

So if you know a really good orthopedics doctor, please email me their number.  

Help needed urgently. See below for details. 

It’s 8:00 p.m. on Wednesday night. Alexis has mastitis (again), and is basically unable to do anything except breastfeed lying down. Laelia has had five or six doctor’s appointments in the last three days, depending on how you count, and at least three (or four) of them were related to her getting her orthopedic shoes, which hurt her terribly. She basically cries the entire time she’s awake. Sometimes she calms down a little in my arms, so I have been carrying her around almost all day, with breaks to make food for Alexis and myself.

I took the day off to take care of Alexis and baby, but between this, mastitis round 1, Alexis tweaking her neck, and everything else I’ve missed a lot of work in the last month, and it’s getting to the point where I can’t really miss anymore. What we really could use is someone who could come over tomorrow (Thursday) and help take care of Alexis and baby. Are you that person? Email me at shroud41 (at) gmail.com with your availability and phone number. I think ideally we would love to have somone from about 9-6, but we would be happy with whatever we can get.

Thanks,
charles

So Charley went back to work today. Last night was so hard without him. Laelia slept a little, but mostly demanded lots of attention. I would wake up after ten minutes of sleep feeling her eyes boring through me. Then it was: hi mommy! are you awake now? are you going to play with me?! that would be so much fun! let’s play right now! yeay!

We got back from Placerville last night. I think Laelia misses grandma Christina… or maybe that’s just me… around 6am. We’re tired from all the traveling. I hope all the traveling wasn’t too hard on her. I’ll post another blog about Thanksgiving as soon as I get these pictures off the camera.  

I did end up getting her up, dressed, fed and the laundry started before heading out to her doctor’s for casting. The doctor left early yesterday so we got home from our trip and were on our way to the hospital when they called to reschdule for today. So it was me by myself with no money for parking (oops) and ten tons of baby stuff (with no husband pack mule). Her left wrist looks good and will come out of the cast early. Her right wrist looks worse than it is (with a large bruise and bent thumb), but will need a lot more work. Her right foot looks better and will probably get surgery soon. Her left foot lost a toe (under the foot, it didn’t fall off!) and is not as good. Charley and I want them to cast above the elbow on her right arm next time, but bending the elbow like we do for PT so it anchors but also is helpful. Laelia cried through the whole thing and then slept soundly after her lung workout. There was a ten-year old girl getting lower body casts off after what looked like a car accident. Every time that little girl cried, Laelie would start. I don’t know if it was empathy or foreboding.

We got home and got the mail where this letter was waiting for us:

Dear Mr. & Ms. Wesley,

This is to notify you that I am closing Laelia’s case with the California Early Start program at the San Diego Regional Center. This decision is based on the fact that she is not eligible for services at this time due to her diagnosis which is considered solely low incidence. If in the future you have concerns regarding Laelia’s development bla bla bla contact us again bla bla bla.

We were expecting that since she is not developmentally disabled and she doesn’t qualify for a ton. So why did it feel like a punch in the gut? I’m still trying to find some government assistance for her care since I’m told that’s why we pay taxes. According to the California website we don’t qualify for SSI, but other people are saying we maybe should apply anyway and when denied, get a lawyer. After today alone with the baby, I don’t have the energy to deal with it all. I’m tired!

Well Charley walked in the front door from his first day back to work only to find me with a half-naked baby (her clothes were covered in plaster from casting), a messy house, no dinner and the lights off. Why were the lights off? Because I was too busy with the baby to turn them on when it got dark. It just seems like three full time jobs, especially after casting.

So today was hard. She went through a million diapers and she becomes a different kind of awkward after each casting. And the whole time I felt guilty for not holding her more or playing with her. There’s just so much to do. I still need to do her OT and PT and give her a sponge bath, um, and get eight hours of sleep someday. But on the positive side, we did it. Laelie and I successfully managed to stay alive when left to our own devices. It’s a miracle.