Laelia Sky Wesley

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.  

Laelia the Magnificent moved her left elbow for the first time ever! And the best part: we got it on video! Discovering that my camera could take videos has been great. I noticed she was moving her arms a lot one night when I was holding her a certain way. Charley grabbed the camera and voila! I took the video to show her physical therapist and she told me that it would be extremely hard to move her arms from a resting position, but since I had them up at eye level it gave her the freedom to move them towards her body. Now it’s been incorporated into physical therapy! So I’ll hold her like that from now on and see if she can get those elbows moving more on their own!

Look at her face after she moves that left elbow! She’s responding to her daddy’s gasp or something. But look how happy she was with herself.

I can’t tell you how excited we are about this. She has previously shown no independent movement in her elbows whatsoever. She got to the point where she could move her shoulders (which is the only thing moving her arms) and of course she’s been able to twitch her fingers for a while now. It wasn’t until I watched the video Charley took that I really saw she didn’t just move her shoulders, but she bent her elbow! For the very first time! Ever! Hooray!

This picture is of Laelia’s physical therapist (right) and occupational therapist (left). This was one of those appointments where they double-teamed her. They were really excited about the video and her progress! I’m already looking at adaptive gadgets that can utilize this ability for feeding herself in the future!

I’m really pleased with the new right arm splint. It works the wrist a bit better. Her left hand is also much improved. It tends to lose range of motion very easily, but it has shown the most improvement! Yeay! Laelie!

Song of Solomon 7:1 - How beautiful are your feet with shoes.

Psalms 130:1-2 - O Lord from the depths of despair I cry for your help: “Hear me! Answer me! Help me!”

After a week of pain and heartache, back in casts.

We are getting rid of the braces. I’ve been in to the doctor Tuesday, Wednesday, Thursday, Friday and today (Monday) about these braces.  They don’t work and have been falling off and hurting Laelie. Problem is that my baby requires a different kind of brace because her ankles/heels are not fully formed (the bone is out of place from all the casting) and she’s special. Okay that’s not the problem, the real problem is that it took a week to figure that out and my insurance (HMO) doesn’t like this change. The doctors have to get my insurance to cover an alternative option for Laelie’s care. We’re working on it. It will take 7-10 days for the new braces to come because of insurance delays. In the meantime, I have to decide rather or not to put Laelie back in casts or keep her in these painful shoes! Both options are bad news, but which is worse? I wish the insurance didn’t have a say and we could just go forward with the new braces. I don’t want her back in casts if they’ll hurt her or something. I don’t like the shoes. What do I do?

One of our doctors also said that she believes Laelia has torticollis. It’s probably just part of the arthrogryposis, but I didn’t think her arthrogryposis affected her neck up. That means we’ll have to watch her speech and jaw and stuff later on now. We are trying some exercises to see if we can avoid getting a helmet. That’s all we need–splints, braces and a helmet. No way she’ll be socially stigmatized then… sheesh.

Bla.

In other news, I’m learning that my daughter is going to do things in her own way. This is the age when babies start to reach out for things. Well, as this picture shows, when Laelie sees something she wants to reach out for, out comes the tongue! She’ll stretch her tongue out towards the toy she wants. I wonder if all babies do that or if that’s her own special thing. I learned about a woman in her 40s with arthrogryposis who paints with her mouth. And God gave my daughter one pretty mouth too.

This is our very first bath that Mommy and Daddy have ever given us in our whole life! Now that we are out of casts, we can be bathed almost regularly… when we’re brave enough to remove the braces. This is the night before she got her braces. She hated this bath because her legs/feet were so sore, but I’m hopeful more pleasant baths will follow.

The floaties are pieces of skin. We filled the tub with skin flakes and later when we emptied the water out, there was a ton of powered skin in the nooks and crannies of the bottom of the tub. It looked like sand after a trip to the beach. Her feet look okay in this picture now that we’ve removed a lot of the layers of dead skin. The lighting doesn’t allow you to see much, but there are cuts and bruises on the feet. She has fat displacement that make the feet and ankles look smaller than they will look later.

Sorry, Dad, she looks like a snowboarder. This is four days and four adjustments after initially getting the shoes, and she is finally calm enough to be set down without crying. Because of the angle of the braces, it is hard to sit her up or put her down. She’s doing a lot better.

This is a great picture of her general attitude towards the shoes. She speaks for all of us. Thbbbbbb!

We got the bad news that we’re looking at Laelia being a paraplegic who doesn’t have any upper body to work walkers or wheelchairs. Hope is dim. We’ve been to a doctor or therapist every day this week. Going back often because of my baby’s chronic pain. She’s in the worst pain so far. She woke up every 15 minutes last night screaming. Sometimes it was only ten minutes. Sometimes five. Charley would pick her up and she would fall back unconscious in his arms since she was exhausted. She screams when picked up, put down, held, breast fed, sat up or really moved at all whatsoever. With a scream that is short and furious like a you-just-broke-my-leg scream.  

They took her casts off and put painful braces on her feet that we all hate. They didn’t cast the legs straight. We were told she wouldn’t walk. Ever. So why put the legs straight. She has huge sores over the Achilles heel which turned out to be her heel bone! Her feet look really bad. She screams. She can’t sleep. I’ve been told everything by doctors from, “She just wants you to pick her up,” to “We would give you those x-rays you need, but we don’t have time, plus it could give your baby cancer,” to “Just give it a week.” 

And I can’t care for her since I’m flat on my back with my second bout of mastitis! But I’m still having to drag myself to doctor’s appointments (except for yesterday when I got worse) just to be told that I need to give the evil orthopedic shoes a week to drain all life out of my baby before we’ll really know if they are actually evil or not. To get the shoes I had an apointment at 12:45 but they had lunch from 12-1 (oops) and I was locked out of the building. So I sat there with a fever, dizziness and body aches (that I didn’t know where the makings of round two mastitis) while crying my eyes out on the floor in front of the door. Then I went in to baby’s most painful appointment yet and followed that up with physical therapy AND occupational therapy with some splint work. She actually fell asleep during her splint work (and for those of you who have come with me to OT, you know how exhausted from screaming she must have been). This was followed by two days of misery.

I can’t begin to describe the depression we’ve felt this week. Charley and I have just held each other and little Laeliekins as she’s cried. We’ve cried a lot. The last time Charley and I cried this much was at the hospital when Mom’s heart didn’t start again after the car accident. I remember he held me outside the hospital after being with my family. I was under his chin and I felt burning hot tears crash down on my head. Charley didn’t feel the grief in that instance like he does now. I’ve seen him more angry and more sad than any other time in our eight year relationship.

It’s becoming more clear that my little girl will have a hard life. Just imagine how many times you touch your face a day. How many times you get up, walk, hurry when you’re late, go to the bathroom–how you get ready in the morning. That’s all a miracle.

I think it was the combination of some pretty harsh truths said bluntly by doctors along with sickness and tiredness and Laelie being in such bad pain that has brought us so low. I was taking baby down the elevator after one doctor’s appointment when the thing started to rattle around the forth floor. I was hoping the thing would just fall and end all this.  

We’re doing a bit better now. We’re dealing with having a child with no working arms or legs and just leaving any unknown miracles to the future. We’re living day by day. I’m feeling better. After realizing what was happening to me physically we already knew what medicines to take and called my doctor immediately with the name of the antibiotic and Charley picked it up around 1am. Then Charley rubbed out my aching body and took care of the baby. He took time off work (without having the sick time or vacation to cover it) and took her to all her appointments the next day too. He’s the best husband in the world. And he’s mine ALL MINE!!!

I can’t believe it’s Thursday. Sunday night I was worried about casting Laelie Bug’s legs straight the next day. Then after that didn’t happen AND x-rays we were promised didn’t happen AND we weren’t told very much AND we were only given 30 seconds of time and told “see you next month,” well, it’s not what I expected. I was looking forward to more options and I got less. I was looking forward to a great outcome of surgery and I was disappointment. She’ll be in these braces for three months and then just at night for the next four years. Then we’ll reconsider some things. Oh and Charley demanded some x-rays and we finally got them. He also got a sit down to discuss Laelie’s treatment and that’s when we discovered a lot of things we had no idea before. We didn’t know how bad it was. I think people didn’t want to break the news to us then. Maybe there was some hope but it didn’t work out. Whatever the reason we were not communicated to, we know a lot more now. And it’s bleak.

Her feet don’t look good. I hate that. Some toe nails were broken off/bent at the base of the nail from all the torture sessions. Her heels don’t touch the bottom of the shoes and the foot is red and cut and warped. The shoes are cute, but I hate saying that because they’re evil. Cute and evil. Like Hello Kitty. Only for real, Emily.

I think I would be doing a lot worse without the thoughts and prayers of friends and family. I felt them at my worst. I was lying in bed trying, unsuccessfully, to feed my screaming baby with her braces (that have a bar connecting them) propped up with a pillow, and the only good thought in my head was that there were people out there thinking of me and praying for me. Who knows, maybe it could have been worse.

I know we put word out that we needed help too late at night for anyone to respond (under the “Emergency” post), but it worked out and Charley’s boss is really cool even when he’s out of vacation time. We’ve been lucky and blessed in so many ways. Even when things are terrible, I still have the best husband and daughter in the world. Plus a loving family who lives too far away and a loving Dad who has excellent taste as shown by his choice of wife, and the two of them love my baby despite everything and make wonderful grandparents.

The nurse who refused to change my baby’s diapers after she was born stating “I won’t touch that!” and the lady who hit my daughter in the face with her coat and the selfish twosome who can’t see past their own noses and the kids who call my baby ugly have been hard. But really when I think of it, there are ten nice people in our lives for every one bad person. Maybe twenty. And for all the government *won’t* do for us, there is a lot of good we have for being under this government as opposed to a third world country. 

Wow, being optomistic? Me? What is the world coming to? But seriously, thank you all for being so great. Thanks for thinking of us. Forgive my rantings during the worst time of my life. I write all this to get it out of my system, but also so you know how to pray for us. It means a lot.  

Thanks for checking in everyone! Okay tonight is when we find out how Laelia’s surgeries went. We will discuss braces or more casting and it will be decided split second without a sit down.. as usual. We will also finally cut off these awful casts that are cutting into her legs since they’ve been on her for three weeks and she’s trying to grow here! I haven’t been able to sit her up for the past several days since she’ll cry and the casts will cut into her. She outgrew them last week! But I can’t soak these off since I’m afraid to mess up the surgery site. Charley and I will be so glad when these things are off. As for more casting, our physical therapist told us that she will not be able to straighten out Laelia’s legs with stretches or therapy, so we are going to request more casting to hopefully achieve that. Unless our orthopedics doctor has major objections or doesn’t think that will work (since there is nothing to anchor them) that’s what I will be trying to push through tonight. We’ll see. Laelia will also get some special brace thing for her feet. I’m not sure when that happens though if she has more casts. I’m really nervous. Charley isn’t able to be there either. I’ll go over at three and be out of there by six so it will be some fast decision making! I just hope that we do the right thing and that the surgery worked its magic and that people around me are hopeful and less “doctorlike.” Deep breath.

In other news:

I wish they came three months old at birth. This is the absolute best age! Laelia is smiling and awake more and so cute! Her little cheeks are rounder, she has a tiny bit of hair, her stubborn eyes are turning even more brown and she has more range of motion than ever! She can now be placed fully on her tummy (without a blanket under her chest) with her arms bent in front of her for three minutes! It is so adorable! Did I mention she smiles a lot now? I love that!

I was able to work out for the first time in over six months (I know that’s terrible) on Sunday. Laelia just stared at me the whole time like I was crazy. Then we took her to see the Dead Sea Scrolls and she was so good! She slept most of the time, and when she started to fuss, I picked her up and she got to look at all the scrolls from up high. A lady walked up to say “God bless you” or whatever people that these sights attract say, and Laelie grinned so much at her that I just stood there and listened to her. I kept thinking, “Say whatever you want, my baby loves you!” She said that her’s was twenty and I replied, “Oh you have a handicapped kid too?” She looked at me and noticed for the first time Laelie’s arms and legs (it was dark in there) and said, “No, but she’s twenty.” I felt so dumb. She just wanted to tell me she was also a parent and I totally misread her. Then it was all awkward. Being around so many special kids at these clinics I forget that there are people who just want to share the ”parent secret handshake” and not the “parent of special child world view.” If that makes any sense.

We bought Laelia her first toy that lights up and makes noise after she reacted so well to the one the physical therapist has. It’s a little turtle (that will be featured in the next blog) and it helps us do therapy. There are not many toys that you can play with that don’t involve manually manipulating them somehow. This one requires pushing the shapes on his back, but one push can make him play about four songs. The other few toys we have require pushing, pulling, pressing, poking, etc. And all that means is that Mom and Dad spend a lot of time pushing, pulling, pressing, poking, etc. while baby stares at us.

Laelie also has a cold and is coughing. We stuck textbooks under her bassinet to prop her way up, but I wake up several times a night to the sounds of her gagging or coughing. I keep her nose sucker thing on hand. I hate to say this, but she has the cutest little cough in the whole wide world. She makes a little high pitched noise when she does it too. I’m always saying, “Poor baby!” as I’m grinning at her. She looks at me like, “Thanks Mom, I’m only miserable over here!”

Oh and the best news of all is that she’s sleeping at night!!! Yes more sleep happens at night than happens during the day now. I started putting her down at ten and she would sleep by midnight, so I tried putting her down at eight and now she is asleep by ten! She wakes up two to three times a night, but I can usually get her to go back to sleep in under ten minutes (after a 30 minute feeding). It’s so hard to listen to her fuss when we first put her down. And it usually takes picking her up a couple times, trying to feed her again and leaving the room for a while before she will sleep. Often Charley has to be the one doing it or she’ll just smell the breast milk (aka me) and go nuts. I’m hoping we can establish a more predictable pattern before I go back to work in three weeks.

Laelia got babysat Saturday afternoon by her two babysitters, Tammi and Megan, who will be watching her when I go back to work. I’m feeling pretty good about going back to work. Laelie Bug isn’t demanding food every hour or two anymore and usually goes two and a half to three hours between feedings. And it’s so nice to have people I trust and know. Now I’m hoping they lie to me if she says her first word when I’m not there.

We got a letter in the mail from SSI turning us down. That was an entire day wasted doing paperwork followed by an interview. It started to seem like they didn’t care when they asked me what her birthday was and then asked if she had even tried to find work or apply for jobs on her own. Ha! Any three month old will tell you the job market is hard to navigate… or they may just make vowel sounds at you while drooling, but you get the idea. Oh and I found the one thing I could not do during the interview was make a joke. Even when the lady asked if Laelie or I had ever been convicted of a felony. Then said and I quote, “Because that is a requirement of receiving governmental aid.” !!! So I said, “Well if that’s what we need to do.” She just kept talking in this monotone voice and finished whatever (you know) she was reading to me. Sigh. I learned an interesting lesson: the government rewards idiots and punishes people who are good stewards of their money. I would qualify if I spent our savings on ding dongs and decided to quit my job. Hmmm… not a bad idea…

Well on Saturday night Charley and I got really depressed and just sat around numb and crying about Laelia’s condition. I don’t know what got into us. Maybe it’s because usually only one of us gets sad and the other cheers us up. Or maybe it’s because Linda moved out to go back to college and we got sad and lonely. Who knows. But when we’re both sad, we just feed off each other’s depression. Laelia still has no independent arm/leg lifting. That’s just so terribly not good. A girl with the same diagnosis as Laelie wrote that she has a “helper” that would follow her around in high school to assist with going to the bathroom. With our luck, we won’t qualify for this either. At least we can be thankful that this stupid handicap does not affect her brain. She will still watch movies with us and, if she takes after me, enjoy them, or, if she takes after her daddy, dissect them, drawing out universal truths and reading reviews.

Well I would write more, but I see something strange in the distance. Is it a bird? Is it a plane? No! It’s Super Bitty Bear!

Laelia is doing great from her tendon release surgery. She stayed up almost the whole first night doing that little half-cry/fussing thing she does when she’s in pain. She did even better the second night, but was up every hour and a half. Last night she slept with me on the floor in the living room (so Charley could get some sleep) and she did really well. She got three hours in a row from 1am-4am and then she slept from 5am-7am and 8am-10:23am solidly. She will be well prepared for college sleep patterns.

The day after surgery, she had a splint made for her right arm. They didn’t remove the cast on Monday, but instead just bivalved it and taped it in place. That way the cast wouldn’t come off until we had a splint to replace it. I almost wish we could have just had the cast off for a day like we did when the left arm cast fell off. Her poor right wrist and hand were so sore and stiff and we had to bend and stretch her into the splint while she screamed. It’s a hard job to make those tiny little splint parts. They start by cutting pieces of paper towels around her arm so that it won’t hurt her and then they cut the plastic pieces and heat them to conform to her arm. It’s quite a process. Sometimes it takes several “try-ons” and readjustments before the splint is finished and that is what she hates most. Before they could get the splint on, they had me scrub about seven layers of dead skin off of her arm and in between her fingers. And those fingers did not want to move! This whole process happened not even 24 hours from the time of the surgery. Laelia missed a feeding and cried herself to sleep that evening.

The bad thing about this new splint is that you have to hurt her to get it on. Her wrist is bent funny so I have to hold it down to get the thing on. I mean, it’s made that way, that’s not an error. Also her thumb was bent in such a way that after four attempts to make a splint to fit it, the therapist gave up and promised to work on that more next time (on the 28th).

Yesterday she was doing much better. I didn’t do her therapy since she was just miserable the day before. We just relaxed. I even took her to work with me for a Christmas gift exchange. She got passed around and seemed content. She really is such a good baby.  

I was too upset to take a picture of her right hand after the cast came off and now I regret that since it looks so much better than it did. The hand is still awful swollen and there are deep groves where the fingers are bent. I trimmed her nails yesterday and massaged another layer of dead skin off it today and that made a big difference. I also took 45 minutes to stretch those fingers. I will continue to massage it until she can be touched without crying or flinching. Today was the first time I’ve been able to touch her right hand with the splint off without her crying too much.

I’m now getting to the point where I enjoy seeing all her fingers again. Yes, they have a long way to go before they look like typical fingers, but it’s a start. OT now takes twice a long (about 30 minutes if you go slowly) so I’m going to try to get us in a new routine where maybe I can do one half of her upper body and then the other half later.

So many people have told me that it’s amazing what medical technology can do nowadays. It’s true that had she been born even 100 years ago, she would just be crippled with no hope for future independence. Still, hearing about medical science does not comfort me. Not after all the research I’ve done. There’s no cure for what she has. There’s no way to grow the muscle that she lacks. I can’t even get all her parts looking the way they should let alone moving the way they should. And she’s working toward goals that fall short of even the basic normal functioning of typical kids. Right now we’re focusing on getting her to be “less special.” I think it’s just natural for people to share stories of their cousins or friends who had this or that wrong and got this or that surgery and are now fine again. That’s just not our situation at all. I understand it’s hard to know how to comfort someone. I just wish I could hear more, “That sucks,” and less, “Thank god for medical science.” Can you tell I’m unhappy with medical science at the moment? :-/ I am learning not to put all of my hope in doctors and devices, surgeries and splints—but instead putting more hope in God, positive thinking, my daughter and supportive friends and family.   

I was driving down the road on my way to the parking lot when this handsome man walked up alongside my car and let himself in. It was my wonderful husband! He got off work an hour early and surprised me. He had been walking up and down the sidewalk waiting for me to drive by. I was so relieved that I didn’t have to do this with baby alone.

Baby was a little bit more fussy than usual. She was fine until the casts came off. She is an old hat at casting and knew we never take them off without stretching her legs and feet into new ones. Maybe that’s why she was so fussy; she kept waiting for us to cast her. We went into another room where we waited for a while. She just got fussier and fussier. Charley walked her up and down the hall and threw her up in the air. She just stared up at him with these sad little eyes.

Her feet are looking better than they ever have before! They don’t move, though, and the toes are curled in, but they now turn out exposing a part of the ankle where the tendon surgery could take place. She started crying as we were leaving the room. There was someone walking in front of me leading us to the waiting room and I wanted to run her down. (Go faster or let me run back!) Some other baby was screaming in a room next to where we waited, so while we didn’t hear much of our baby’s cries, that other baby made the waiting torturous.

 Now the ankles are a bit more straight. They stink like blood though and I hate that. Some of the blood actually seeped through the gauze and through the cast itself. Can’t get that off for three weeks. When the casts dry a little better, I’m going to try to cover it with white crayon. It makes me feel aweful looking at it.

It took almost an hour to get home in traffic because of an accident. She was in the back seat with a dirty diaper. We finally got her home and changed and the plaster washed off her. She breastfed for over an hour and cuddled while fussing. Charley started kissing her face while she fussed and that kept her quiet. He announced, “I’m kissing another girl in here!” while I was in the kitchen.

She’s asleep now and I’ll give her some baby Tylenol when she wakes up. She is fussing in her sleep too. All in all I expected it to be worse and it wasn’t so bad. I noticed when the heavy casts were off that her hips wiggled a lot more. Her legs don’t have a lot of mass to them, but I’m hoping they might firm up once she can move them again. I’m not making predictions on them yet since she’s been in casts most of her life, but I had hoped they would feel differently. Oh, I love her so much and I hope this is all worth it.

I am really nervous about our surgery tomorrow. I’m wringing my hands. Tendons in both feet are going to be released. This is the best time to do it. This is one of these amazing surgeries that the longer we wait, the more major the surgery. If I had this done, they would have to put me out, but if a baby has it done, they just give a local shot for the pain. Then they will cast her legs around the surgery for three weeks so I won’t even have to clean the area.

I’m so worried about this. I’m trying not to think about it. My stomach hurts. It’s so minor a surgery compared to the surgeries I’ve been looking at. If she has any good muscle anywhere on her body we’re considering moving it to the bicep of her dominate arm. That’s pretty major. This should be cake, but it’s the first of what could be many. I’m scared.

But moving on to happier things. My friend, Megan, just announced that Laelie would be getting a new friend in August. I’m so glad she has so much friend potential! My other friend, Jess, is moving to Washington DC. At her going away party today her little boy, Andrew, asked me if Laelia would miss him when he’s gone. So precious! We went to church this morning and left Laelie in the nursery. I am pleased to announce that she now has a boyfriend, Jonathan. He’s a few weeks older and they just stare at each other in the nursery. So cute! And, unlike my rebellious daughter, he has bright blue eyes.

Speaking of rebellion, I tried to take some pictures of Laelie before the surgery while she’s still up and about and happy. She’s not cooperating.

Thbbbbb! I hate Christmas pictures!