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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you Adam and Chelsea for coming over with dinner and dessert and stuff to bring to the hospital! And thanks, Adam, for feeding Laelia her broccoli even though it smelled bad. It was great to be so distracted!

Dad and Christina showed up with (and this is a rough estimate) about 300,000 toys and stuffed animals. I guess after Grandpa passed away, Grandma gave a lot of his stuff to Dad, and Dad had to make room for it by cleaning out my old room. So he came over with several bags of treasures from my childhood. They’ve been good and distracting. At one point with everybody laughing and talking, I forgot that my stomach was in knots until I tried to eat something else.

Laelia got her new splints this morning and went to bed with them tonight. She’s looking spiffy. I think she thinks it’s her birthday or something. Lots of family and friends and toys and late bedtimes. She even got some pizza, mac and cheese and crackers for dinner. I figure it balances out since she doesn’t get any food tomorrow.

Tomorrow I’m going to cut her fingernails and bathe her again. We’ll take turns eating breakfast out-of-sight upstairs. Then we’ll load her in a car around 10:45 AM and head over. I want to remember to take before pictures. I probably should pack a bag tonight, but I’m so tired and out of it. Still waiting for my sister’s flight to arrive. Hmmm… I may not make it. God, protect my baby girl. I just feel so sick to my stomach. Maybe I’ll just sleep. ZZZZZzzzzzzzzzzzzz.

Well, it’s almost six in the morning and I’m going crazy. I left for work early since I didn’t have to be at Laelia’s splinting appointment this morning at OT. I can’t believe her surgery is tomorrow! But it’s not just one big event that she needs to “get through,” it’s several hospital visits, two hospital stays/surgeries and months of pain management. It’s like knowing you are going to have the stomach flu for three months. You’d want to get through it, but you wouldn’t want to start that process either. I got delirious yesterday at the thought of canceling her surgery. I daydreamed about actually announcing that it was off. But then I would just worry like this another time, and I’m already sick of worrying. I feel like I have three fists punching me in my stomach, in my chest and in my throat. They’re making me sick.

When we were going to get Laelia serial casting back in the day, I remember one time while waiting for our turn there was a little six-year old girl in a lower body cast. She had been in an accident and needed surgery. Now she was all healed from surgery and getting her casts off. She just kept crying and crying that it hurt so bad. She couldn’t move. Her whole body was rigid and her face was distorted with pain.  So after all the heartache of surgery and recovery and casts and general awfulness, it wasn’t over for her. Laelia is scheduled to get her casts off before Christmas, but that doesn’t mean her recovery will be over. That doesn’t mean our nightmare will be over. I just have to get through this year!

I cried hard last night thinking about if she didn’t come out of surgery. How I would regret not canceling it. I thought of all the things I would miss. Charley and I talked about her chubby grin we love so much. We don’t know how we would go on without her. And although I allowed myself to grieve that possibility, I knew I couldn’t think about it for long. The whole thing is just so scary for me. I wonder if other parents would feel this way.

It’s hard to enjoy her. When she smiles at me it breaks my heart. I wonder if this is the last time she’ll smile at me. I cried through feeding her dinner last night until Charley came home. It’s awful.

Well I’d better start my day. I’m working today until my family gets in town.

That’s another thing. I’ve been worried that I planned my life poorly by thinking long term. Maybe I should have been thinking short term. I go to a job. I send Laelia off to school (and to other new experiences). I go to the gym… Maybe I should have been a stay-at-home mom who focused on cramming several years worth of memories into just under two years of being with Laelia. If she doesn’t wake up I’ll have that regret. But if she does pull through this fine, which is, um, definitely the much more likely outcome, then of course I did the right thing by thinking long term. Actually I may have several years of memories already. I have a gajillion photos.

I’m just making myself crazy. And since I like to blog, now you all know I’m nuts.

Worst nightmare ever: Your child had a successful surgery, but never woke up from it. … I want to stop having those!

Once again, her first surgery (which we now know will be for her right side) will be September 16th. In. Three. Days. (!!!) Her second surgery for her  left side will be October 1st. Then of course we’ll be making several trips to the hospital in the following months to change casts, get pins removed, get check-ups, etc. We may end up going into the hospital a lot in the coming months.

Oh and our insurance may have to change which is stressful, but we’re handling it. We have Charley’s right now, and changing to mine will cost us a lot more so that’s out. Bleh. More on that later. Um, and I’m recovering from being ill, which is not helping things. (It’s not contagious so we’re not worried about infecting Laelia before surgery.) But I did go to the doctor last Wednesday and am taking it easy and riding it out. I passed out yesterday right before my husband’s big Beatles Rock Band party, but then just relaxed with friends and enjoyed the rest of it.  I’m learning to take it easy when I’d prefer stressing and worrying.

We have now received all our paperwork for the surgeries, including pre-procedure instructions. When reading through the pages, Charley and I were doing okay–even when they mentioned that we can’t feed her (something she won’t understand) the day of the surgery. But we were okay. Then they had to go and list the items to bring with us to the hospital. We read the first item–a favorite toy or stuffed animal–and both lost it.  We know just what to bring though: Mr. Bear.

They also said to “remove child’s makeup, nail polish and jewelry” prior to surgery. We both scoffed at our two-year old in makeup… and then realized that she has earrings.

We found out a lot more about this surgery at Friday’s appointment, but I’ve been unable to write about it until now since I’ve been ill, and we’ve been so busy besides! But for those of you who asked when I didn’t have specifics, here’s my attempt at specifics.

(Oh and just a quick aside… after meeting with the surgeon, we found out two things that are different than what we thought before–things we may have shared with everyone. The first thing is that the hip work they’re doing won’t fix her crouch (standing position) problem like I thought it would, nor straighten her out. It will help, and also pave the way for future surgeries, but won’t fix things. That’s hard because that knowledge was something we were comforting ourselves with and we were mistaken. But, like I said, it will help, and it is necessary to do now. The second thing is that her pain and recovery are going to be a lot worse than we first thought. Our only other surgery experience up until this point was those two tendon releases that were done to her feet. Click here to read a sleep-deprived account of that experience from December 17th, 2007.  This will be much worse. She won’t be able to go to school or PT or OT or do much of anything for a while. So not great news, but good to be prepared.)

Surgery specifics:

Her hips/legs: They will increase ROM (range of motion) by cutting the IT band that runs down the leg in two places–by her hip and again closer to her knee. They may also cut away soft tissue in her hips. (This won’t entirely eliminate her crouch, but it will help.) And she’ll have some scars in the shape of lines running down her legs in those two places on both legs.

Her feet: They will loosen the heel cord, scrap out extra tissue in her heels and also manipulate the soft tissue around the bones of her feet to rotate them out and allow the bones to have proper placement in the foot. For example, her ankle bone will be in her actual ankle after surgery.  Then they will put pins in her feet that will get removed a month later to hold everything in place. She will have pretty big scars along her feet that wrap around her heel.

Her toes: All ten toes are getting tendon releases. (Where they cut/nick the tendons to lengthen them.) Goodbye curly toes? Well depends on how much tissue she has to work with after surgery. They will get more curled after the surgeon works on the feet, so I don’t know what they’ll come out like. She will have a scar on the underside (near the base) of each toe.

Her knees:We talked about this and the surgeon really doesn’t want to touch her knees at this time. So we’re leaving them alone. (It may look like she has already had surgery on them, even fooled her pediatrician, but those dimples are a side effect of the arthrogryposis where the tissue bonded to the bone.) She can’t straighten out her legs because of the joint contractures in her knees right now, and after two years of stretching them, I don’t think she will without intervention. But when she was little the surgeon told us he didn’t think she’ll ever stand or walk  (yeah, thanks) so he didn’t want to touch her knees since they are in a perfect bent position for sitting in a wheelchair. But he did say on Friday that he would  consider  doing surgery on the knees in the future depending on if she could stand or if it would greatly help her. He just doubted he would have to.  Come on, Laelia, let’s make him!

And we will have a biopsy taken at the time of surgery too. This will leave another scar, um, or two? I can’t remember if she gets it in more than one place since her EMG was in FOUR places. This biopsy is something they wanted to do back in July of 2008 after they ran that awful EMG test (where they stuck her four times with a huge needle and ran electric currents through her) that showed she had extremely weak muscle and her nerves may be damaged. The test called for a biopsy back then, but since biopsies are extremely painful it was suggested we do it the next time we have surgery so she’ll be unconscious.

As far as casts, the surgeon told us that maybe instead of a full lower body cast, he may do waist high, or I should say, thigh-high with a wrap around the waist instead. We’ll see what he does. (He said he’ll figure it out as he’s doing it.)  She will be able to fit in a carseat and will be able to have a diaper change if you can picture it. It just won’t be easy since the legs will be bent at 90 degrees to anchor the casts.

The surgery will be at Children’s Hospital (3030 Children’s Way) on the 3rd floor of the orthopedic building. It starts at 1pm and I’m not sure exactly how many hours it is, maybe three. I (Queen Mama, whom the rules should not apply to) am only allowed to see her after she wakes up from surgery. She is suppose to wake up around one hour after the surgery is over. I’ve been having nightmares every night that she doesn’t wake up. Then other nightmares that she wakes up and no one is around and she’s scared. At least my family will be there. If anyone else wants to visit just text or email me. I’m not sure if she’ll be in the same place for recovery as surgery so I’m not sure where exactly we’ll be. Something to check on. Then we should leave the next day September 17th, but I don’t know what time. I guess it all depends on how she’s doing.

So, yeah, there’s all the big surgery information I can think of. I feel like I’m forgetting things. We’re just trying to get through this. Laelia is the most precious thing in the world, and I just keep saying that like it changes the fact that she needs surgery. It’s my mantra: She’s the most precious thing!

I thought this might give people a better idea of why surgery is needed for her hips. This is the straightest she can “stand” right now. Her hips and tush are pulling on her lower back. Plus her legs are spread wide, and go up and out like she was meant to do nothing but sit. Hopefully if all goes well, and it will, the surgery will greatly improve her ability to straighten out!

So I don’t know, how  are  we doing? A lot of bad has happened in the last two weeks. My grandfather, the one who built my tree house and played video games with me and was there every single Thanksgiving, who was my next door neighbor my entire childhood, is gone.

I had a physical reminder last week that my body isn’t good at making babies. (And, no, I don’t want any either, ever again! And we’re not trying! But I hate that my body isn’t right.) 

I had to defend my choice to be a working Mom to a misinformed, Bible-spouting ignoramus.

My work is crazy since it’s our busy season.

Our cat got fleas. Okay that last thing sounds like nothing, except for the fact that I have this annoying small bugs phobia. I have been scrubbing and vacuuming everything in sight, and I’ve not been able to sleep at night for fear they’ll eat me.  Of course we have only seen a few fleas, and I nuked (with flea spray) everything in sight, and put Advantage on all three cats. It should be  me  who keeps  fleas  up at night.

But I think the worst are these panic attacks that come from thinking about Laelia’s surgery. I get scared and worried and start shaking and crying. But then I don’t think about it for a while, and I’m almost fine again. It can get bad at night, but I get little stabs of panic or grief at random times during the day too. I had one on my way to work yesterday morning. Had one when I had 9 minutes left on the treadmill. Had one when discussing my schedule for the next couple weeks. Had one fifteen minutes ago… 

I just can’t believe she starts school next Thursday. Then surgeries come six days after that. It’s too much. It’s too soon. I’m not ready.  

Other times I’m better. I have a lot of encouragement and support from friends and family. I know I haven’t gotten back to everyone who has emailed me, but I do appreciate it very much! I’ve gone out to Golden Spoon and talked with Lauren, I’ve gone to the gym and talked with Chelsea and I’ve gone out with Maria and had a couple drinks. I felt a lot better after talking about it, and then being able to talk about other random, girlie things too. It’s that bit of normalcy that feels good.  

We’ve also had some good distractions. Like when Lali throws a fit when she can’t have a “cack-er.” Or watching her play with her new Power Wheels. Or listening to her sing Twinkle Twinkle Little Star.

Okay I feel better after getting a bit out on the blog. I think I’ll go to bed now. Thanks for keeping us in your thoughts and prayers.

This is how old Laelia was after her first two tendon releases when we first learned that she was indeed looking forward to a more major surgery someday.

Day 4, or 3? Or whatever.

It’s only been a few days since I got scary surgery news, and, thanks to my family and friends, I’m feeling so much more hopeful now! I had so many emails and phone calls and texts from a rag-tag group of wonderful people who have really made this so much easier! Chelsea is back from touring with a band for the past week, so that’s great news for Laelia. Because *Laelia* missed her a lot. **Laelia**is really needy apparently. (Unlike her mom who is a rock of self reliance. ) And then there’s Megan, who watches Lali Mondays through Thursdays, who has been completely flexible with our crazy schedules, occasional doctors appointments, future school schedules, etc. She brings her little Joshua (12 months) over and Laelia loves him to pieces. Laelia and Joshua share a straw cup and take turns drinking water from it. It’s so cute! I love watching them play peek-a-boo, or the times when he walks all over her while she barks at him! Laelia can even say “Sew-a” now, but prefers to call him “Baby.” I think Joshua is doing a lot to prepare Laelia for school with other kids.

Besides my friends, I’ve recently been contacted by other families affected by AMC who have gone through similar surgeries. I’m starting to love these wonderful strangers!

It also looks like some of my family will be able to come down around Sept. 16th and go with us to the hospital. That will be helpful just to have them near to distract me while I freak out during our hospital stays. I know myself. I know I won’t be able to breath until she wakes up, and I won’t be able to rest until she’s out of pain. And I know they will be a great help to me.

Right now Charley and I are trying to work out the little things: getting days off work, working around Laelia’s school schedule (her teacher says she can come when she’s up for it, even in her body cast), trying to get information from the surgeon’s assistant (like if a post-op Lali will fit in a carseat–they haven’t gotten back to us yet), among other things.

If feels good to be doing something! I hated just dealing with the news and feeling so helpless. I was fixated at one point on how bad her scars would be. I was even looking up how old you have to be (or how young you can be with parental consent) to get a tattoo in California. It just feels wrong to make this decision to give Laelia giant scars on her legs, feet and hips without letting her make a decision when she’s an older teen to cover them up with ink. I know that’s the age when a young girl’s self image means a lot. Of course not everyone thinks tattoos are pretty (or even good things since they are permanent and all), but  no one think scars are pretty. Well, I know everyone is different, and maybe Laelia will want to show her scars off, or just treat them like any other part of her body, no big deal.  I hope so. I got a lot of advice on the scar issue. Laelia’s Grandma Christina even told me about Mederma Kids for scars. I’m sure we’ll get some of that and try it after they heal a little.

Not that everyone with scars have poor self images, but I think it’s different if your scar has an adventurous memory tied to it as opposed to being from a surgery. I also think it’s different if you’re a kid, or even a boy, but I hate that Laelia will have to have these scars as a young lady. And I think, strangely enough, that fixating on the scars instead of the awful surgery is helping me stay sane. Sometimes I stop and realize that the ONE sugery Laelia’s doctor mentioned a year and a half ago, is now TWO much more involved surgeries, and it drives me crazy.

Speaking of Laelia’s doctor, I have talked to a dad of a kid who had hip surgery done by the same doctor when he was little. I’m told this doctor is the best of the best. So that makes me feel better. Even though I’m not thrilled with the man, who cares about liking him?! Just as long as he does his job expertly! I’m told I will like him after surgery is all over with, not because he’s the nicest man in the world, but because he can sometimes work a miracle! I would love to see Laelia totally straightened out and able to put her legs down, knees up. Here’s to hoping!

So I just wanted to say thank you to everyone who has been so wonderful. I really appreciate it! I’m doing a lot better. No more tears for a while.

None of her bones are where they should be. Her heals are empty of bones and her ankles are way up into her legs. All of her toes are curled by the pressure. Something has to happen and fast.

*Laelia would just like to mention that she hates x-rays.

Laelia’s AFO shoes have helped considerably, but the problem is worse than we thought. It turns out her hips are greatly affected too. That’s why she sits with her legs so wide apart and can’t seem to straighten out. She’ll never stand or straighten out her body without intervention. Stretches are no longer gaining ground, at least not in the lower half of her body. 

*Laelia would like to mention that getting into Mommy’s purse has been fun but not completely errased the x-ray memories.

Day one.

I know I haven’t written anything in a while. I think that’s because I didn’t *need* to write anything. This blog is usually a form of therapy as often as it is a way to update the grandparents on what Laelia’s doing. And she has been doing great! She likes to mock me recently. If I hiccup, you’ll hear her little chorus of pseudo hiccups echoing shortly after. She loves to kiss things–her teddy bears, pictures of people in books, keys on her play piano–pretty much anything she’s thrilled with at the time.

She’s also whip smart. She knows the tune to the entire Twinkle Twinkle Little Star song and will sing it three times in a row the whole way through. (She sings “bah bah bah” instead of the words.) She knows if Mommy sits down at the computer that she won’t be getting attention for a few minutes and will automatically find that she is in some peril at that very moment! (Daddy kissing Mommy usually triggers the same response.)  She also knows to throw her head in the direction of the cookies and say, “Ah” in a loud voice during meals. (This little trick has gotten her some cookies for breakfast from Daddy while Mommy’s at work.) Speaking of cookies, it’s amazing what the all-powerful cookie can do. Lali has an “I’m too disabled” look, or at least that’s what we’ve called the look she gives us when she doesn’t want to move. Kids know how to work with the excuses we give them, and too many people are too forgiving of her tantrums because of her disabilities. So when she doesn’t want to do something she’ll fling her legs uselessly and look pathetic.So when Lali gives us that look and won’t roll across the carpet to come to me, it’s funny how two seconds later she magically figures out how to maneuver around furniture to do the same task when there’s a cookie involved.

Her language skills haven’t improved as quickly as we would like. She mostly says “ga” for things. But her reception skills are tip top. For example, she can’t say “chin” yet, but if I ask her where my chin is she’ll reach for it. She actually recognizes everything on my face, but the only thing she can name with any consistency is “eye.” (Sometimes I’ll be lying down with her on the bed and hear her exclaim, “EYE!” a splint second before mine is assaulted with dirty fingers.)  

Our house has turned into a baby-talk center. Everything has a name and is repeated several times while she plays with it. Then we use that word in several sentences. Then we ask if she can say it, and any attempt is praised and praised. I sound like an idiot half the time I’m on the phone, because I have to take breaks from my conversations to repeat a vocab word Lali has discovered. And Laelia LOVES the attention that vocabulary games present. She knows how to say something very close to, “What’s that?”  Then she loves to be rewarded with learning whatever word she wants. Of course without her being able to point well or lift her arms, sometimes I just guess what she wants or I’ll start naming everything in the general area.  Oh, well, Laelia, that’s the fireplace, chair, changing table, teddy bear!  I had my hopes up that school would increase her vocabulary. She was scheduled to start on September 10th. But that plan looks to be derailed.

We found that Laelia’s first major, scary surgery is being scheduled for September 16th. Not only that, but her second major, scary surgery is scheduled for only two weeks later: October 1st! The first surgery is for her right side and the second is for her left. They are going to fix her hips, feet and ankles and all ten toes. Oh and some tendon releases. She will be in a full-body cast for 3-4 months afterwards. More casts. I hate casts. So much.

I knew this was coming, but I put it out of my head. There was this big surgery looming over our family like a black cloud, but I always told myself it wouldn’t happen for a few years and I could relax. Then to find out that the surgery is around the corner, and it’s not one major surgery, but two! And it’s not just for her feet like we first thought, but also her hips! It was like a sucker punch to my gut. But the way Lali’s body is growing means we can’t put this off. I’ve been in a state of shock and tears. My brain keeps screaming, “But she’s so little! She’s just a baby! She didn’t do anything wrong!“ 

I find myself worried and stressed to say the least. I have this sense of dread when I think about her going under the knife… twice! She’ll have to stay in the hospital overnight both surgeries. That means that without complications it’s at least four days in a hospital. And she’ll have some pretty ugly permanent scars on her hips, feet and long ones up both thighs.

And complications can range from minor to major. My biggest concern is the anaesthesia. Arthrogryposis kids have problems withthe anaesthetic. I have these visions that she will go in for surgery and never wake up! In fact, I’ve been mentally preparing myself for her death. It’s morbid and unhelpful, but after losing my mom and grandma and others, I’ve learned that death is very… easy. We don’t think about it, because if we did we’d go crazy, but it happens all the time. I don’t like her surgeon either. He doesn’t care about us emotionally so how can I trust him with her physically? On this site somewhere I have a whole blog that is one big angry rant against this man for being an insensitive bully, and now he’s going to be cutting into my baby! It makes me want to scream!

So, gosh, I don’t know. I don’t know so much about this surgery. They tell you the basics and then you come up with questions and talk to the assistant. I don’t know if she’ll be able to sit in a carseat after this or anything. I have so many questions and can’t think of any of them right now because I’m so scared.

So that’s what’s going on. I can’t hold her enough right now. I know I need to think positively. I’m trying. But I can’t hold her enough.

I just fed her a cookies for lunch.

Laelia and the Heater

Bleckidy bleck week. That’s all I have to say. Here’s the breakdown: 

Sunday: Found out my Uncle Ray had passed away.

Monday: Baby’s accident. And the sell of the Union Tribune (Charley’s job) goes through.

Tuesday: Late to work because had to make sure baby was not concussed. Hard day for baby at OT.

Wednesday: Crazy lady at Target. Laelia’s splint doesn’t work right. OT on vacation.

Thursday: We fear for Charley’s job. Massive lay offs at the UT.

Friday: Charley’s job (and subsequently Laelia’s insurance) are safe for now. We decide we can’t fly up for the funeral.

Saturday: Family emergency pops up here in San Diego. Family comes to us.

Sunday: Mother’s Day. Remembered Mom. Hard day.

Today Monday: My work gave me a bereavement day. Family comes over.  I finally get to blog. (So sorry it’s gonna be long.)  

It’s been a hard week. I have really been missing my mom a lot recently. Of course I keep telling myself that she’s having a better Mother’s Day than everyone else, but still, I wish she were here. She died two days after Mother’s Day back on May 15, 2001. Mother’s Day is always hard for me. Mom’s brother, Ray, died Sunday. That was hard on my family. Charlotte, Linda and Bud are the three surviving family members of my mom’s nuclear family (parents and siblings). So no wonder this time of year would have me thinking of family. And I hate thinking of how my family is getting whittled down to nothing. So by the time Laelia is my age, how many of the people who really made an impact in my life will be in her’s?  

Then there was baby’s accident. It involved my genius idea to put a ceramic bowl filled with drying flower petals on top of the heater so the cats couldn’t get to them. Then Laelia with her new mobility shows up and kicks the heater (which makes a cool reverberating noise), and that bowl drops down and shatters on her face.

As you can see from the picture above, it fell a long ways. It happened before Charley left for work, but this was the same day that the UT was sold. Not that coming in late would make a bad impression on the new owners, but we just didn’t know. So I left work and rushed home to take her to the doctor. She was bleeding out her mouth and facial bruising was starting. I didn’t know exactly where she was hit or how bad it was so I was relived when the doctor told me it was fine. How scary! It was only the inside of her lip that was cut which caused the bleeding (that didn’t require stitches), and even though it hit her face pretty hard, it missed her eye! (Came REALLY close though!) And it looks like it didn’t hit her head, although we still had to watch her for signs of a concussion. (Which kept us all up all night.) The rim of the bowl left a mark that went from under her eye, to right down her lips all the way to her chin.

Now she is doing a lot better and the bruises are almost totally gone. It’s only when I feed her something salty or try to brush her teeth that I remember she’s hurt. And she let’s me hear about it too!

Then the next day we have to go to OT (occupational therapy) and I have to hear, “What happened?” from everyone we meet. :-/ Not fun. What else was not fun was that it was a crazy appointment because our OT was leaving on vacation, and since she’s the best, all us parents freaked and got last minute appointments. So it was very stressful. We only got one splint made, but it doesn’t work to wear at night (because it cuts off too much circulation) so we have to wait until Jill gets back from vacation to start using it (and of course she still has to make one for the right hand.) We learned that Laelia’s hands are tending to drift (little finger leads her hand to the side) so we added a new stretch that pretty much just holds her hand straight while we move the thumb to the side to straighten out the hand. Turns out it’s doing this on both hands because she’s missing the little muscles in her forearms that would keep them straight. More muscle loss?! How much muscle can this kid be missing?!

Then the next day is my funny Target story. When checking out, the lady at the counter asked me if Lali could walk yet. I just said, “Not yet.”  The lady looked so confused. “Well why not? Have you tried? Try right now and see if she’ll do it!” Of course I have this internal discussion on the merits of explaining arthrogryposis to a stranger verses dropping my kid to the floor. But the next thing I know, to the floor she goes! I let her down feet first so she of course slides to her tush and starts exploring the dirty floor. “See, she’s not ready yet.” I say and then pack my bags. The lady was mumbling something about me never letting her try because I hold her all the time, or some such lecture, but then let it drop.

Thursday began the most stressful part of our week. We thought Charley had lost his job, but thankfully that’s not the way it turned out. Still, for half a morning we were sure Laelia would not be able to go to therapy anymore and we would have no place to live. Or at least that’s what I was thinking in a panic. 

Then we had an entirely different issue down here that my family has had to deal with. Two of my family members came down which was nice since we couldn’t go up to the funeral, but the circumstances surrounding their visit are of course not good. I just learned a little more about it today, and am keeping them in my prayers.    

Well now that I’ve vented about my no good, very bad week, I remember how my mom would always make me “count my blessings” if ever I complained too much. So here goes:

-We signed up for a CF walk to support the Cystic Fibrosis foundation. It’s happening May 16th. We’re taking Lali in the stroller. To donate to my team click here. We’re on the team Emma’s Angels. Emma’s mom was very supportive and comforting to me when Laelia was first diagnosed. Even though Emma’s condition is very different from Laelia’s condition (we even go to different floors of Children’s Hospital), it’s amazing how similar our struggles are!

-Got to be with friends and family this week.

-Laelia is more mobile than ever before.

-Charley still has a job!!!!!!!!!!!!

-My job has been flexible.

-Charley gave me an hour massage when I was feeling down. Just because! Then I used the gift certificate that the president of my company gave me for another hour massage, only a professional one this time. But I still liked Charley’s better. :)

-And best of all (because I’m weird like that) my cousin Charilyn and Charley and I got everything done on my housework to-do list!  Hey, that stuff makes me happy.

~~~

There, happy Mom?!

So I occasionally watch some television shows online. One show I used to watch was Eli Stone. Although I found it really dorky and the acting was bad too, but I enjoyed it.

Anyway, ABC announced that they were cancelling the show back in November. Then a couple weeks ago or so it just ended. There are still four episodes out there, but ABC is not showing them. Eli Stone is off ABC’s website and everything.

I wondered if the cancellation had anything to do with the last episode they aired. The last storyline involved Eli’s pregnant coworker who was informed by her doctor that her protein levels were high (which I guess shows possible Down Syndrome in the baby). Her first thought was abortion. Then all she did was worry about having to do an abortion if the child was going to be different. I didn’t really think they would do an abortion on the show, so I started to think that maybe they were introducing a special needs child onto a mainstream television show. I thought that would be great! You know, to show how the parents dealt with their baby whom they would love a great deal.

Instead the baby was perfectly fine. Yea. Relief. The baby gets to live.

Did you get my sarcasm? Ooh! It just made me so mad. Can’t have disabled children on television unless they serve some sympathetic plot point! Can’t have this TV beauty queen have an “imperfect” child. (Even though it would have made her character the least bit interesting for once!)

Maybe my reaction is overblown. After all, how many times have people like minorities complained that Hollywood is only geared toward its own ideas about beauty? But I still don’t like the show for this move. And after their whole Autism-is-caused-by-childhood-vaccines episode which led stupid people to not vaccinate their children, the show was on thin ice with me anyway.

I used to read a lot of romance novels. I remember after Lali was born, my friend, Rachel, let me borrow a couple romance novels while I was on maternity leave to get my mind off things. But they were hard to read. They were Nora Roberts books (my favorite), but Nora is famous for good writing, likable, relatable characters, and the perfect babies those characters make together. No disabled children. Then I started wondering why there were no romance novels about a girl in a wheelchair falling in love? Or a story about a young man finding someone with arthrogryposis beautiful? (I’m not talking about sex books here, just romance stories.) I remember one time while on maternity leave I was holding a Nora Roberts book and smiling because I was thinking about how beautiful Lali was and how she would one day have a story like this. But then fear hit me like a car at 90mph–what if she never finds romantic love? What if she never has a Charley of her own to love?

And you all know my own personal conviction that everyone needs a Charley. (I’m just saying. You all know the world would be a better place.)  

But now another fear is gnawing at me: What if the mainstream culture makes her feel less valuable? Less wanted? Less beautiful? Like something you just kill off, survival-of-the-fittest style?

I guess in all honesty I’m just bummed that the imaginary TV characters didn’t have a special needs child. In the 40 minutes it took for them to introduce the conflict of possibly having that child, to the end of the show when the doctor called to say everything was fine, I had gotten my hopes up about this TV series showing the world (or whoever watches the show) how it’s not the end of the world to have a baby with a disability. Viewers would have watched this child grow with the seasons and touch people’s lives. It could show how (after an adjustment period) “normal” people can have a “normal” life with a special child.

But I guess TV people aren’t normal, and aren’t allowed the luxury of having the best, most interesting kids in the whole world to love.  

Rules for doctors: (deep breath)

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

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

#3: Never tell me to “relax.”

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

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

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

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

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

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

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

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

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

#13: Don’t be patronizing!!!! 

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

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

(and exhale)

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

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

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

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

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

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

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

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