Laelia Sky

We got sleep! And it scared me to death. :) We went to bed around midnight and woke up at 8am. I panicked. I ran to the bassinet to see if something bad had happened. Laelia was lying there and just starting to fuss and wake up. She slept all night long! I’ve never gotten so much sleep!  

I changed her (and boy did she need it) and fed her and put her on the bed where she fell back asleep for another ten minutes.

This was taken the night before and she did seem unusually sleepy. During ‘flying around the room with Daddy’ time, she started to droop.

Now that I have all this sleep, I should maybe clean up the mess that hurricane mastitis left behind.

Thanks for all the comments and emails. It means so much to us. This was the worst week of our parenting careers so far. Charley said that Wednesday was his worst day as a father. He was upset that he couldn’t get the baby to stop crying. She was in pain and he held her for literally hours on end. He was amazing, but it was hard on him. I re-read some of the blogs I wrote this week. I actually thought I was sugar coating parts of our week, but it does seem accurately bad in the blogs. We’re doing a lot better now. My dad called and I admitted I was really mad at God one day. He was like, “No kidding. Wouldn’t have guessed that from your blogs.”  

Life is finally returning to normal. Baby is going to bed at 10 again and can sleep without waking up screaming. She is better about pain in general. She still can’t be picked up or put down without crying because that hurts her little feet somehow. We went to orthotics AGAIN today. Charley went back to work so it was me with baby. The shoes kept falling off after getting them changed for the last three days. When I called and got the receptionist of orthotics, she was very short with me. She asked who I was so I gave her my name and mentioned that she might remember me since I’ve been in the office for the last three days straight. I told her the problem and heard her sigh audably! She informed me (not so kindly) that I had 25 minutes to get there or my baby would not be helped until Monday (three days later)! It didn’t matter that I had mastitis, hadn’t eaten that day, needed to feed the baby or wasn’t dressed. I took enough time to make Laelie a bottle (and get dressed, don’t worry :)) and raced to Children’s Hospital. They added a little padding in the left shoe and sent me home. The guy who takes the parking fees took pity on me and didn’t charge me. Probably ’cause I looked like a mess.

But that did the trick. Laelia’s shoe-braces haven’t fallen off again. I’m so thankful. When they fall off or are slipping, they aren’t holding the foot in place and more casting would be needed to fix that. Today makes four days in a row that we’ve been in to fix these darn things. I’m hoping these places learn that I don’t go away when they shoo me. I stay and make them fix it.

Tonight I talked to a father of a boy with arthrogryposis (AMC) whose son seems similar to Laelia. He can walk. His parents were actually told he would though. We, on the other hand, were told “I don’t know,” then, “I don’t think so,” then, “Lets just make her comfortable for life in a wheelchair.” The father gave me the name of the surgeon that helped his son, so Charley and I are going to try and see him for a consultation. We don’t want to look into surgery yet; we just want more options.

I just really feel like Laelie will be able to walk. Maybe not for years. Maybe not in the same way others do. But I just think she will. Maybe it’s wishful thinking or maybe it’s women’s intuition.

I’m getting a DVD from the vice president of the AMC support group on how she does everyday things like getting up and ready in the morning. She was also told by doctors that she would never walk (which she told me made her mother MAD :)). The DVD was only $10 and goes to support the group. I’m looking forward to it.

When the braces on her feet get removed the next time, I’m going to take a picture of Laelie without any braces or splints on. Then I’ll post it next to a picture of her at day one of life. It’s amazing how twisted she was and how much better she looks now. In some ways parts of her body look bad, but it’s only when I get out the old pictures that I realize that they actually look so much better!

My friend, Rachel, came over today and played with the baby. Laelia loves Rachel. She asked if Laelie is always so good when other people play with her. “No, just you.” I taught Rachel how to do her stretches and we did them together. If it weren’t for Charley yesterday and Rachel today, I wouldn’t do the darn stretches. I feel like it’s just adding insult to injury with the week she’s had, but they are really important despite everything else going on. We found out her thumb is missing a ligament (we think it got damaged during casting), but besides that thumb, her hand is really improving its range of motion.

She’s really doing a lot better. That makes everything better.  

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!

I haven’t had my camera on me recently because all the baby was doing was crying. We got casts off and braces on and things changed, but I couldn’t take the shot with her crying. I have one picture on this site of my baby crying (a feat she does often) and it makes me feel bad every time I look at it so I just avoid cameras during hard times.

But I had no idea that my little strong trooper would laugh for the very first time today. She has been in pain ranging from extreme to just a lot since Monday night. It’s now Thursday night. We took her braces off for a break and I played peek-a-boo with a blanket. I hadn’t done that since she was a tiny newborn fresh from the oven. She would just stare at me then. But this time she laughed. At first I thought it was a cry, but her face was smiles so I was confused. Then I realized that you can’t crush this little girl’s spirits as easily as you can the older kind (like Mom). I have a lot to learn from my miracle. She’s the kind of strong I want to be. The kind that can cry when it’s happening and then let it go.

She laughed again (for the very second time in her life) a little later on tonight. She had the shoe braces on this time, but was being played with and enjoying herself. She still cried when we picked her up because it’s still ouchy, but I no longer worry about her emotional development being delayed because of the pain.

She’s amazing. And she’s MINE ALL MINE!!! (I just like saying that.)

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.  

Mad like insane. It’s insane to have a little girl with nerve endings in terrible pain located in limbs she CAN’T EVEN USE! Why does God hate my baby girl? This is the worst pain she’s ever been in! Doctors have told me everything from, “Give it a week, then we’ll know if it’s really hurting her,” to “I think she just wants you to pick her up.” Argg! I’m worried that I’m giving her too much Motrin. It shouldn’t be this way. How come all the stupid abusive people or drug addicts or polygamists get all these healthy children that are perfect and I have a paraplegic in terrible pain who can’t sleep or eat? How can a window washer fall 47 stories and be moving more arms and legs than my daughter can? And she only had one little in-the-womb accident no one knows the cause of! Although people look at me like I sat there punching my stomach all during my pregnancy, I didn’t even have so much as a fever! I’m so mad! She just screams. We’re so upset. I watch my husband cry out of the depth of despair. What terrible thing did we possibly do to deserve this? Some people have been so mean. The whole world is just screwed up. And during the worst pain of my daughter’s small life, I am throwing up with a fever and body aches and can’t lift my head let alone her little body into my arms. I hate these shoe braces! Why God? Why allow all this crap?

Help needed urgently. See below for details. 

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

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

Thanks,
charles

Little Laelia was your average law-abiding citizen. She was known for her good deeds like helping this nice old lady learn to play the drums.

But secretly she was Super Bitty Bear! A crime fighting super baby known for even gooder deeds!

One day all the super heroes started to disappear. Rumor was that they had been trapped in some elaborate cage! Who will save them?

Super Bitty Bear will save them! She was off in a flash! There’s no need to fear! Super Bitty Bear is on her way!

So Super Bitty Bear looked and looked. She got a tip from a concerned citizen that there were strange noises coming from the crib room!

Hey guys, if you all look to your left you’ll notice the crib isn’t actually holding you here! Yea! We’re saved! Thanks Super Bitty Bear! No problem fellow Do-Gooders! Now who wants to buy an action figure? Anybody?

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!

10:00pm!!!! That is bedtime now!!! GO TO SLEEP!!!!!!!!!!!!!!!!!!!!!!!

Thinking about it… um… no thanks. 10:00pm means NOTHING TO ME!