Laelia Sky

Today I had a doctor’s appointment and baby had therapy at the same time. Charley took the baby and a bottle to therapy and I went to my OB for my checkup. We were only apart for an hour and a half but it seemed like forever. I called Charley when I was out of the office to see how Laelia was doing. She was in the background screaming. I hung up really fast and worried about her until they got home and it turned out that that was the worse she cried the whole time. Bad timing. Charley showed the therapists the exercises he does with her and they said she was making progress. The physical therapy we do now is very gentle. Everyone at Children’s hospital liked her crayon decorated casts and Charley got a lot of attention in his role of single parent (I believe he even got hit on by a few moms there but he’s not answering my questions directly).

When I got home from the doctor and before baby and hubby could join me, I got a call from my cousin Charilyn that my cousin Nathan has been incarcerated. He didn’t just fall off the map. He had just moved to the neighborhood and had moved in with my other cousin, Josh. He’s facing a felony and some misdemeanors. It’s possible when all is said and done that they may drop the charges (or lessen them or something), but it could be bad. So we’ll be having some family in town soon. It just seems like my family has had some bad turns lately.

Charley and I debated and then decided to fly Laelia home for Thanksgiving. My grandpa is out of the hospital now and we’d like to show him his great granddaughter. I have other family who have yet to see her, too, like grandma and other cousins and aunts and uncles. I can’t help thinking it will be a hard holiday for my cousin and his family though. Nathan and Josh came to visit before any of this happened so he did get to see Laelie (outside of church) so that was good.   

Laelie went on her first walk tonight. We had only 40 minutes of daylight left when we set out. She had the widest eyes the whole walk. People commented on how little she was. I wrapped her in a blanket inside the stroller so no one could see the casts. I wouldn’t know how to explain that to strangers anyway. We went to the park and back. By the time we walked in the door she was sound asleep. I think she really liked it. We’re going to make it a habit.

Well I am tired of making her car seat rock with my leg while typing this. She’s so spoiled. She has a swing she loves but it’s upstairs. That swing cost us $5 at a garage sale and is worth it’s weight in gold. Let’s just see what happens when I stop rocking the car seat.

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And she’s crying. Alright Laelie here’s more rocking. Oh we like that. We’re happy again.

As of yesterday we were given our second set of arm casts and third set of leg casts. Her right thumb got caught and moved in her cast and it is shoved more against her palm as a result. We’re fixing it with the new casts, but I’m unhappy about it. The doctor was surprised the casts stayed on since wiggly newborns usually don’t keep them on well when they aren’t anchored above the elbow. There was another baby there who was a bit younger and very wiggly and I can see what they mean. I understand that not all babies are like mine, but can’t people understand that Laelie does not move? She has amyoplasia which is a=no myo=muscle plasia=growth, so by definition she won’t be able to move much with the limited muscle mass and then add to that the arthrogryposis (joint contractures) and extra tissue and I don’t know why they’re surprised that she doesn’t move and the casts stay on. Ah, an old back and forth between this doctor and myself.

I told the tech to be careful with her arms since they don’t bend the way normal arms do and the lady told me that she doesn’t mess with that, the doctors do. Then she started to remove the casts and turned her arm (the wrong way) to do it! Maybe there was a miscommunication, but I wish people would listen without me having to be Mama Bear.

Baby did better with her casts this time. She was very fussy and demanded food every hour for the next 24 hours. She also not only screamed during the casting but during the prep (unlike last time) because she knew what was coming. Despite all that, something about this visit made me think I can actually do this. Maybe she was a bit better or we knew what was coming. Maybe it was because she calmed down once in her car seat. (Actually when we can’t get her to stop fussing we just stick her in her car seat and pretend we’re going somewhere and two seconds later she’s unconscious. She’s in her car seat right now in fact…) She just seemed to handle it better, although I admit it could be that emotionally I handled it better and am projecting my mood onto her.

We also finally got occupational therapy authorized. So now we have all our therapies authorized. It turns out that it is possible to get our insurance to authorize this stuff sooner since her case desperately warrants it. We just didn’t know how to force them to do it or who to talk to when we needed PT authorized and they weren’t going to help us! (groan) Charley kept calling the insurance people and checking on the status and telling them how important it was. It turns out that all those stupid idiots (for lack of a better description) did was check our name on a computer screen for the status we kept requesting, brainlessly nod their heads through our story about our situation and then hang up and forget about us. They never got in touch with people who could help us. Actually when we asked to speak to other people like supervisors, they just did the same &@#&* thing! Well this time by luck (and not a little prayer from friends and family) Charley managed to find the right people to talk to who sped the process along. We had our first authorized appointment today. The bad news is that she may have missed opportunities for greater range of motion (ROM).

With casts Monday and therapy Tuesday Laelia is exhausted and fussy. Hopefully we’ll be able to schedule things better in the future, but we couldn’t pass up an opening with PT and OT.

When they took her out of the old casts for the five minutes of pictures before the new went on, we held her and she weighed nothing! She was so light and felt so wonderful. We touched her arms and legs all over. I tried to hold her hand, but her fingers won’t bend from being in the casts. The tech told me that they would be sore if I tried to move them. I did my best not to cry and just focused on the improvements in her wrists. They are still at a negative number when it comes to ROM (meaning they cannot go straight out) but I think the casts are slowly working. I’ll be so much happier when I can hold her hand. I’ll be happiest when she can lift her arms high enough to put them around my neck (that is a long way off and may never happen though).

I drew flowers on her leg casts this time and hearts on her arms which got lots of comments. A girl’s got to accessorize! I drew little hands with thumbs facing the right way too. For some reason her left arm cast is a lot longer because of how they wrapped it. So I drew a hand of cards on that cast to make up for the length.

I also drew some aces up her sleeve on the underside.

Laelie got her casts Monday night. The next 24 hours were the predicted hell. Now we’re getting use to them a little more. I drew on them so I could tell which way her hands went. I didn’t realize that her arms curled in the wrong way until we had the casts. (Just one more difference, *sigh*.) Instead of resting at her sides with palms facing towards the body, they face away. Drawing little hands on the casts help us not to hurt her when positioning her.

After getting the casts she would wake up in the middle of a deep sleep to scream thinking we are doing PT on her, but it was just the constant pull of the casts. She cried for hours and then whimpered after she was exhausted. It wasn’t until Tuesday night that she started to act normally again.

I’ve been sick. This is my first time out of bed for any length of time in a couple days. We thought I had a breast infection, but it turned out to be a bruise that made breast feeding painful. The lactation consultant said to try massage and pumping and now the blockage is gone. I was also sick to my stomach for a long time. I just needed sleep, but baby was hungry and doesn’t take a bottle very well yet. We think she either had another growth spurt or she just needed comfort on Monday and Tuesday because she ate every hour… which was painful.

I miss holding her hand. We would hold hands and she would try to grip my finger or thumb evey time we breast fed. I miss it so much I cry.

When doing the casting the doctor and assistant just kept asking if we were sure this is what we wanted. I hated that. No, we’re not sure. We don’t know anything. The occupational therapist, who has studied arthrogryposis more than any other medical professional we know, said this was best. They didn’t use to do it this way, but saw better results with extreme cases. The doctor just kept saying how she had never casted all four limbs before and poor little baby. The assistant said he had done it once before, but not on a baby. They offered to just do one arm and not the other for no reason other than “poor baby with four limbs in casts.” Then they explained that she wouldn’t be able to move her arms if we did this. (Duh!) But she doesn’t move her arms anyway! Ever! Just her fingers. And it’s not like I don’t miss holding her hand! I didn’t choose this! I didn’t wake up one day and decide to be mean and put my daughter in four tons of plaster! We’re just trying to do what’s best.

After listening to all the input, I decided (at the last second) to only cast up to the elbows. The doctor casting her seemed happy about that. But now we have the possibility that these casts will slip down. Which would suck and we’d have to start over. I think I made the right choice since it is a little bit easier to get clothes on her since her elbows have a small passive range of motion. That said, she is still wearing clothes for kids four times older than she is in order to get them on her.

I just hope this works.

Before we even had the casts on them, a little boy at church asked me if her hands were broken. I didn’t know what to say, but someone else was there to field the question. Other kids were asking why she was that way. I have been thinking about it and have decided finally how I would respond. I would say that God didn’t make her this way. He made her perfect. She had an accident. Just like people have car accidents and need fixed by doctors. Only this accident happened when she was still in her mommy’s tummy. Now this accident was no surprise to God, but he allowed it. Now we’re trying to fix her, but she’ll never be like other kids. And that’s okay. Because being different is okay. And being different doesn’t mean you did anything wrong. That’s just the way it is.

Happy Birthday Laelia!

So today Laelie is one month old. It seems like it’s been years and at the same time it’s hard to believe she’s not still a week old.

Charley’s friends, Bolt and Aduma, are here and they decorated the living room with balloons and streamers. I decorated her casts with crayons with little hearts and stars and butterflies. We hope to get a memory card for our camera to take a picture of it so you all can see. Crayons work much better than sharpie markers on her casts since the smell is not as strong and her casts get changed so often that they don’t need anything more permanent to decorate them. I also decorated her cardboard box… that she loves… more than her bassinet… still.

I’m so grateful to have a little daughter. Some kids with AMC don’t make it to their one month birthday. We have been so blessed. We did nothing to deserve her. We did nothing to deserve her pain, true enough, but also nothing we did warranted the amazing love that she’s brought to our lives. We love our Laelie Bug.

Question: I found out my baby has AMC when she was born. How do I take care of her?

Answer: Your child is like any other child. You may have to feed her by tube for a while, because sometimes babies with AMC have weak sucking muscles. You MUST begin stretching and massage right away—in the hospital if possible. If the doctor wants to wait a while, find someone else who will teach you how to do it. Surgeries and splints can wait, but gentle massage and stretching doesn’t need to unless your child is exceptionally fragile. Your child will need to receive physical therapy for years, as well as occupational therapy and possible speech therapy. Developmental delays are usually caused directly by their physical limitations, not by any problem with their brains. You will still cuddle them, read to them, make funny faces for them, and show them off proudly. I promise.

This is one of many helpful things I have learned from the AMC (Arthrogryposis Multiplex Congenita) support group website (third link down in the links section). I am now a junior member and have already been in contact with other moms with kids like Laelie. Some are better than her and some are worse off, but all the moms seem to have the same things in common. Many felt just like me when I found out about Laelia’s condition even though now they are strong, well adjusted and totally in love with their kids. There is a forum so we can share what worked in the way of surgeries and casts and physical therapy too.

Based on some of the information and emails I have gotten from other moms, we have decided to back off of the hard physical and occupational therapy and go for a more mild, gentle approach. We’re still doing physical therapy everyday, but now we stop if she cries. If she fusses we’ll keep going, but more gently. Then we will request more aggressive splints and casts for the greater improvements. Also I am massaging her every time I breast feed her.

In effect, this is making her more “touchable” and less flinchy. I always want touches to be a good thing. Now we need prayer more than ever that we get regular PT and OT appointments (especially OT) to do the more aggressive therapy. That way the doctor’s office is associated with pain as opposed to our home.

I’m so glad the other moms with AMC kids were able to help us out in this area. We were doing really bad emotionally with doing her PT. It was killing us. It was really bad. It was the worst thing I’ve ever had to do in my life. We couldn’t go on like that. It’s being adjusted for our sanity’s sake as well as Laelia’s sake.

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Laelia will have her casts on and off for a long time. This first batch of casts on her legs will last around three months with recasting happening every Monday. When the casts are finally off, then physical therapy will start on her legs until recasting is needed.

Her arm casts are more tricky. Her wrists are bent in such a way that they cannot even make it to a straight (0) position. When noting her mobility in a chart, her wrists had a negative number (which the intern taking the measurements didn’t even know how to write down). So with a -45, her wrists need major work. Casting will happen Monday and recasting every Monday as well, but we don’t know for how long. After the casting, we will do splints which will be more long-term but removable. By high school we are hoping she can just wear them at night and even put them on herself if all goes well. By high school.. geez. All our hopes are on a functional adult, but her childhood will be so hard. The doctor who does the casting was very hesitant about casting her upper body and warned that it will impair bonding with her. But after the other doctor talked to her and told her that Laelie doesn’t move her arms at all anyway, it was agreed that she would get casts.

We are not meeting our five-a-day goal for PT at home. (Her therapist wanted us to do it after *every* diaper change.) So far we manage two a day. For about five to seven minutes Charley will stretch her joints out (20 to 30 seconds each joint) as she screams. She screams so much she can’t breathe. I constantly blow on her but she still gets so red in the face that I don’t recognize her so we have to take brakes to get her oxygen. Then it takes about 30 minutes afterwards to calm her down completely. After which she will fall so deeply asleep from all the screaming that she will sleep through her next feeding. And even after we get regular PT and OT appointments we will still be expected to do this everyday. It’s during these times that I pray God will just take her to Heaven right now and spare her a lifetime of this.

Today we tried hot towels and massages to loosen her up before PT. It didn’t seem to work at all and she still screamed just as much. Next time we are going to try wrapping her in lots of blankets to warm her up. We would try hydrotherapy (putting her in warm water), but we can’t yet because of the casts and her stubborn umbilical cord.

We’re not doing good emotionally. Charley is near tears every time he does PT. He told me he feels like a Nazi torturer when he can’t get the baby sweat smell off his hands afterward. I can’t do it at all. After PT we both hold her and rock as she whimpers with these sad, hurt little eyes for quite a while afterwards. It’s getting where she will start to cry when we put her down on the couch (where her PT takes place) or touch her at all.

She no longer curls her fingers around my thumb when she breast feeds. If my thumb touches her hand, she flinches.