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.

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:

Charles here.

So I took Laelie to a morning appointment at Scope a couple days ago. Scope is the orthotics company that builds Laelia’s orthopedic shoes and her KAFOs (knee-ankle-foot orthotics). They’ve also been a source of great frustration, and since my wife has been dealing with them 100% of the time, she was at her wit’s end. Apparently there was some miscommunication between her and the Scope office, and some orthopedic equipment we thought was being manufactured wasn’t being manufactured at all. (The office staff at Scope are not exactly grade-A communicators.) Alexis was ready to fire Scope entirely and find some other orthotics company. So I had to come in and meet with our CPO (don’t really know what it stands for) to try and straighten things out. I called him before I came in, and it seemed like we were going to be able to work something out.

The crackerjack office team at Scope told Alexis–twice–that our appointment was Thursday at 10:00 a.m. sharp. So naturally when I arrived at Thursday at 10:00, I was 24 hours late.

 ”Your appointment was yesterday,” the lady at the counter tells me. I politely insist that it was today. “We tried to call you,” she says. At what number, exactly? She recites my cell number back to me as one of the numbers they have on file. I look down at my cell phone. No missed calls. No voice mails. I stare at this marvel of organization quizzically. Does pure, cold competence run in her very veins? I wonder. “We’ll have to reschedule you,” she says.

After an embarrassing interlude in which I march disgustedly out of the room and call my wife to verify that the appointment is, in fact, on Thursday, I come back to the same lady and insist that the appointment was today. “We’ll try to fit you in,” she says. “Have a seat; you may be a while.” Have a seat! There is no end to the hospitality offered by the Scope office staff!

Luckily, the CPO in the back is a sympathetic man, or else he has spoken to my wife on the phone one too many times, because he calls me in almost immediately. He’s going to take our KAFOs and attach the bottoms of some old orthopedic shoes to them, so we can affix a bar to Laelia’s KAFOs. It will be just like what we asked for–only better. He’s a good guy. I walk away with a feeling that we’re going to work things out with Scope after all.

Then I check my voice mail. Alexis has called while I was meeting with Scope. “I filed a complaint with the central Scope office,” she says. “I outlined all the abuses of the last few months.”

It’s at this point that I realize I’ve seen this play before. Laelia grows up and falls in love at 16 with the son of some Scope employee. Things seem to be going well for awhile, until Mercutio gets killed, and then events escalate until both lovers kill themselves with an overdose of prescription drugs. We all wind up supporting universal health care.

So I call Alexis up and tell her she’s fired. She is not to call Scope again. She is not to go to Scope ever again. I will be her liaison to Scope, for all intents and purposes. If it means I need to get time off work, so be it. I will handle this. She sounds relieved, if anything.

The CPO calls me up a couple hours later, investigating the complaint from the central office. He’s happy to apologize to my wife, if it would help make things right. No, no, I reply, that will be fine. I’ll handle it. You won’t be talking to her ever again.

As you can see, we work hard here at DSP. Even if it’s the Friday before a three day weekend. Nothing stops our work ethic. Yeah.

Tammi is still sick and Charley had a work presentation this morning, so Laelia got to come to my work for an hour and a half and play on the floor while I worked. But everybody had to stop by and say hi… which *of course* led to dance parties.

She really is such a good baby. I had her in my lap while taking business calls and no one was the wiser. Of course if I had been doing the exact same things at home, she would have driven me nuts. I think the novelty of being somewhere new helped.

Okay this will make you laugh… unless you’re Charley, in which case you still want to strangle me.

My story begins at the innocent hour of 2am. I had trouble sleeping because I felt really nauseated. I walked downstairs to get some water and almost fell on my face. Then I couldn’t make it back in bed and ended up falling asleep on the floor in Laelie’s room. 20 minutes after that, I knew something was wrong. The room was spinning, and I had a huge headache. My body felt like the blood had drained from it, and it was hard to get my legs under me. That’s when I started to panic, and this story gets not-so-fun for my family.

I was convinced it was carbon monoxide poisoning because I’d read about it and the symptoms seemed to match. So I knew I had to take my family outside before THEY ALL DIED!!! Or so goes the sleepy mind of a crazy woman. So grabbing my sleeping baby, I ran downstairs. It was getting worse by then, and I was falling over sideways. I got her to the floor gently before putting my head between my knees. (I say it’s justified payback for all those times she woke me up.) She was so floppy and blurry-eyed, it was adorable. I wrenched open the sliding glass door, in spite of her protests, and stuck her in the breeze.

Then it hit me.

I’d left Charley upstairs to die alone, and I was getting too weak to rescue him! So I stumbled up the stairs feeling like I was going to throw up. I fell on the bed, grabbed his hand and dragged him, downstairs while assuring him that everything was going to be okay. I was totally panicked! He was so disoriented that I projected what I was feeling onto him and told him, with some heroic measure of calm, that what he was experiencing was signs of carbon monoxide poisoning. After taking several minutes to fully wake up, Charley began, in vain, to try and convince me that he was fine, and could he please just go to bed now? I couldn’t let him go back upstairs! There was no oxygen up there! Just the thought of it made my head spin. I told him he was just loopy from the carbon monoxide and to stay near the window. Not to worry, I had everything under control.

Long story short, Charley was up for two hours calling 24-hour stores for carbon monoxide detectors and then drove out to get one. Then he was up another half an hour watching the detector upstairs read “0″ while silently cursing me. Of course while he was upstairs checking the monoxide levels, I had thought he passed out up there (because I very nearly passed out several times waiting for him), and I started to panic all over again. Then the detector’s alarm went off and I nearly lost it. Gun shots would have been more welcomed. It turned out Charley had the batteries upside-down and the machine didn’t like that.

This whole time my little baby is trying to sleep, but I keep thinking she’s stopped breathing so I wake her up by sticking my face near her face. And the whole time the room is spinning!

I didn’t sleep well that night. I was downstairs on the floor with baby next to the open window. The carbon monoxide detector had been reading “0 parts per whatever” for too long to make Charley stay downstairs. It got so bad I couldn’t lift my head, and did I hear baby stop breathing again? Better check.  

It turned out that I had vertigo. So my whole family wasn’t dying from an oxygen deficiency. See, funny right? I guess it got less funny the longer Charley was at work the next day. Being the upstanding guy that he is, he swallowed his “scathing invectives” (my term for what he was thinking not his :)), re-mustered his verve and held Laelie up to me saying in a baby-voice, “Mommy, next time you go crazy can you imagine we all have a cookie deficiency?”

Could this possibly be one of your favorite shirts that you left when you visited me?

Click on my picture, Grandpa, to see your shirt being tortured for my mommy’s amusement.

Okay, so Ms. Dawn from Early Start comes over once a week, and sometimes she’ll leave a toy for Laelia. This week Laelie got to borrow a toy called “Little Smart First Words.” I had wedged it in her lap, but she didn’t seem that interested. Then Charley comes home from work and had just walked in the door when his daughter starts to wiggle in excitement. I picked up the camera immediately to capture baby’s joyous *electronic* exclamations!

This is totally America’s Funniest Video material!

Squash! Mommy skinned it, boiled it, cooled it, stuck it through the grinder and then forced it down her daughter’s throat. After all that Laelie Bug only got a tiny little bit in her mouth. Where did the rest end up? Right down her shirt! She did better the second time. I had her practice with an empty spoon and cheered every time I could put it in her mouth correctly. Then I added a little squash and it worked a lot more smoothly. But for a look at our first attempt, see dad’s (grandpa’s) video documentary below. It’s a little long, but you get the gist of how the experience went in the first few seconds. Enjoy!

Okay I’m SORRY!!! I had no idea that people actually had experiences where they thought boys were girls and girls were boys. I guess after Oprah’s guest, a pregnant “man,” (not an April Fools hoax) was being advertised, people were more open to believing gender-bending news.

I was trying to go for unbelievable, not meaning to actually fool anyone. It was a toss up between Laelia being a boy, Laelia getting her tongue pierced, Laelia reading the newspaper or Laelia being conceived by aliens. Apparently, I chose poorly.

I had meant to be overly unrealistic after the reveal (”Laelia is a boy”), but failed at that. My dad informed me that so much about Laelia’s diagnosis is so rare that people don’t know what to expect. Plus a minority of medical professionals have been apathetic or incompetent in our experience. So I guess this was not as much of a stretch as I had thought.

There was one time when I was a kid that I got my dad really good. He had this truck  that he LOVED. He carpeted the back and installed speakers in the cab himself. He washed it and waxed it and admired it all the time. Well one April Fools Day of yore, my sister and I (although I’ll take most of the blame) decided to steal dad’s truck while he was at work. Being too young for a driver’s lisence I had to enlist Grandpa Dean to help drive it to his place. He agreed, but warned us, “You’d better keep me out of this!” Well when dad got home I told him very straight-faced that someone had come and asked for the keys. And of course I described some stranger. I explained that he came around asking about the truck, and when I informed him that dad wasn’t home, he told me that he was my dad’s best friend and needed the keys. I said I thought it was weird that he didn’t even know dad’s name.

I’ve never seen my dad almost have a heart attack before. I did reveal the prank after dad freaked out but before he called the police.

Apparently I didn’t learn my lesson. I got into work today and found that the blog had fooled two co-workers who let me have it. Not only that, but I have received six phone calls and several emails from concerned people praying for our family.

I laughed with most of them and apologized to the people I actually worried. Did I mention I’m a bad person? After getting over the insurmountable guilt, I did actually feel very touched by some of the people who were there for our family. Although the fact that lots of people didn’t doubt for a second that I couldn’t tell a pee-pee from a vajayjay has me worried. Some of you were very nice regardless.

In a few years we’ll all look back on this and laugh (right?). Ah, honey, there was this time when you were six months old that your mother put out the word that you were a boy. That’s why there’s all that hate mail in your baby book. 

But just so you all know, the only time I presented false information was April 1st. Every other blog is accurate, including, sadly, the news of Gram’s passing which some thought might also be misinformation. And I promise that I will only report our experiences honestly for now on…

…unless it’s April 1st.

Then you may discover Laelia was conceived by aliens.

I’m a girl, honest! 

I realize that yesterday’s April Fools blog confused some people. No, there is no official male-determining test that requires peeing while standing. The blog was inspired by two things: baby often being mistaken for a boy even with earrings and people (including us) focusing too much on her disability. Plus, as most of you know, we thought she was a boy until she was born. We never could get a gender-confirming ultrasound because of her AMC. I didn’t actually go to any doctor’s offices yesterday; I stayed home talking to family about grandma. But I did learn one thing from this blog experience, and that is to give your husband a heads up before you publish something like that. He had no idea what people were talking about. SORRY HONEY!

:)