*sigh*

It turns out she was sick. :-/ Thanks everyone for the wonderful sleepy-time suggestions though!

Poor thing is red in the face! Her stork bite is really bright because she’s so hot. She just hangs on me like a rag doll. I took her temperature and it was 102.7 and climbing! I say “and climbing” because even though it was almost done, the numbers were still climbing when Laelia peed on me. It was one of those thermometers.

Charley called the triage nurse who told us to watch the fever and put medicine in her, but even though we were half out the door, she said to give the medicine a little time to work before running her to the emergency room.

So I ran out to the store tonight and grabbed some Tylenol. My respite gal, Angela, had been watching Laelia tonight and told me that Lali had been lethargic, had a runny nose and was hot. Hmm… sorry other nursery kids! I would have kept her home! She seemed fine, just cranky (for her anyway, she’s a pretty good baby) and besides not eating very much and sleeping a lot, I thought she was fine. She was a little warm when I dropped her off in the nursery, but it’s hot outside. Poor thing. Now she’s on fire. We turned down the air conditioner in her room to “freezing” and propped her with a big pillow. Then I sang that one song she likes over and over and over and over and over while rubbing her tummy until she fell asleep. (She gave me the cutest little sleepy-eyes until she finally fell asleep. Poor sick dear!) She has a hard time staying asleep when she’s so miserable so I have a feeling I won’t be getting any sleep tonight. (It’s been almost two hours after putting her down and she’s woken up crying four times.) I’m forgoing her night splints because they are so bulky and she is already so warm. I’ll wait for her fever to break first.

I hate when she’s miserable. I just think it’s only fair that special kids who have special treatments everyday shouldn’t ever have to have colds! Leave colds for boring kids.

This soft elbow splint allows her to reach down for objects and then bring them up into her visual field! I love it! (Despite the fact that people think she has a broken arm.) At one point she doesn’t understand why her left arm can’t do the same thing. This is a great way for her to bypass her missing biceps during play! Well, that is until some LeTourneau University Engineers make her a bionic arm! (hint hint!)

 I’ll just apologize now for my high-pitched, mind-numbing baby voice and Puppy the cat’s nosey disposition. Enjoy!

My new bar! Umm, my hands got stuck to it.

This new bar is affixed to two giant white shoes that you put over her pretty pink AFOs. We are suppose to wear it for 23 hours a day. We are only really wearing it during naps and at night because it makes her AFOs slip down, causing her little feet to get crammed in a funny position. Hopefully we can get this worked out. I think our orthopedist wanted to add an extra pad in there. Maybe that will do the trick.

Everyday during PT (physical therapy) I get discouraged by Lali’s lack of movement. Stupid arthrogryposis! Stupid amyoplasia! If I try to do her exercises she throws a fit and refuses to do much. I try to encourage her to move her arms and legs, but she will just lie there and cry. I even make funny sounds (I’d die of embarrassment if anyone overheard me), and clap and cheer for her. But she hates it. And I really start to think, Will my baby ever move? 

Then I take her to the orthopedic office and sit her on those medical tables with the sanitary paper, and I watch what I couldn’t get her to accomplish in weeks of PT!

 Click on any picture for the video! 

The orthopedist decided to change the bar shoes from strings to velcro, and while he was busy doing that in another room, I moved my child down the whole table until the path of destruction reached from one end to the other. He came back before I could unroll another several feet of the paper for her.

Hey whatever works, right?!

I am so thankful for the amount of sleep my daughter allows me now. But still, do we have to cry for over an hour at night? It wasn’t her shoes, it wasn’t her splints, it wasn’t her tummy (hunger anyway), it wasn’t her diaper and it wasn’t her temperature.

I’M ONLY HUMAN!!!  

So I can’t read minds and I can’t figure out what in the world she wants. I have a theory that she doesn’t get to expend a ton of energy during the day so may need to work it out at night. I mean after all that crying she was totally conked out. Maybe she just wasn’t tired and didn’t want to sleep all night when she didn’t do anything all day. Not that she didn’t get stimulus today, but, you know, she never moves. So maybe she doesn’t need as much sleep? I just don’t know. 

I sang this soft song in Hebrew to her over and over for a long time while rocking her, and that seemed to calm her a bit. I don’t like that she cries herself to sleep every night, even for only five minutes. I’ve Googled this problem and it’s not an uncommon problem for babies her age. So I’m not special. Should that make me feel better?  

It may also be that she isn’t able to roll over at night. She does get stuck in one position all night and often wakes up with slight redness on her back from sweating. It usually goes away after getting some air. 

Any suggestions?  

“sigh”

http://dyrudadventure.blogspot.com/2008/09/my-last-day-with-laelia.html

Above is a link to the page of Tammi and Rodney’s blog where Tammi talks about her last day as Laelia’s nanny. Just scroll down a bit once you click on the link.

Tammi has been amazing. She helped us out when we needed it most. She did Laelia’s everyday stretches that I was unable to do (emotionally) because of the pain it caused my baby. By the time I was doing better and able to help with stretches, I was amazed at how “loose” (a term not often associated with arthrogryposis) my daughter was. That was eight months ago and I can hardly believe it. Without Tammi I don’t think Lali would have the gains she has today. We were told whatever wasn’t stretched now was not likely to be movable later. That’s very scary to know and then realize that what the doctors want you to do to your baby hurts her! I don’t know what I would have done without Tammi. Actually I don’t know what I’ll do without her now!  

Tammi did me the favor of NOT going into labor this last week. We had another baby sitter, our respite worker, set up to take over childcare starting this Tuesday so we were crossing our fingers that she would last that long.  

Well I found out today that our sitter who was going to take over for Tammi was just placed on a jury that will fill her mornings for the next month! I won’t tell you how hard it is to find someone to watch our daughter and NOT charge more than I make an hour due to the special care she needs. Anyway, two hours ago I talked to Phyllis (from Fellowship of SD) who immediately calmed me down (as she usually does). She is going to work something out to allow me to go to work for the next month. I’m so thankful!

This has been a hard week between stomach aches and tears. Yesterday my family received some bad news. It’s nothing related to Laelia, but everything to do with a dear member of her extended family getting a bad deal. (Why God?) Please keep my family (the Haleys and Damigos) in your thoughts and prayers!

Besides that, work is still stressful, but hopefully we will be slowing down starting in a few weeks. I get home everyday and hold my daughter for a long time as I de-stress.

But through it all, I have felt peaceful. Sometimes I really have to work on stopping whatever I’m doing or whatever negative thing I’m thinking about, and claim that peace. But it’s peace that’s promised no matter what, “at all times and in every way” (2 Thess. 3:16). So no matter what comes our way, or what plans change, I know I’ll be taken care of.  

I had this dream that Lali could move her arms. Not perfect, normal movement, but it was like her muscles woke up a little. She could lift her arms more and even bend her elbows actively like a lot of other kids with her condition are able to do. Then I woke up and realized that it had all been a dream. That led me into a total funk. Now more than ever I looked for some sign that she would be okay, and throughout the day it seemed she was moving even less–her arms hanging lifeless at her sides, her hands unable to make fists. The old doubts came into my head. Will she have friends? Will she find the love of her life? Will she be happy? Will she need someone to help her go to the bathroom? Feed herself? Get around? 

I still have days like this. It’s not everyday. It’s not most of the time. Unlike before, I now have developed a system to pull myself out of the overwhelming dark thoughts. It involves a little cognitive-behaviorism, a little Bible reciting and a ton of prayer. I’ve decided that it’s more important how I handle my feelings than it is to beat myself up for having them in the first place.

But boy what I wouldn’t give to not have them in the first place.

Charley and I are working on ways to take anything that comes our way–medical discoveries, test results, other people’s comments, visions of the future, bad dreams–and not let these things crumble us. We want to not be vunerable to an off-hand remark, but instead be strong and sure of our daughter’s value and purpose.

Oh God, please strengthen the hands that hang down! (Hebrews 12:12 NKJV) 

Laelia playing in her new shoes after getting used to them.

I love my shoes!

 This is before we had real socks yet.

Day one. Look how thrilled she is! haha

Thank you for my shoes! Thank you to everyone who helped pay the out-of-pocket costs for these wonderful shoes! Right when we were starting to stress about our insurance saying we couldn’t have them is when we received a gift to pay the $300 deductible (what I called the “downpayment”), another for the shoes themselves and yet another for miscellanious costs (adjustments, socks, co-pays to get her feet looked at, etc.). My family and friends came through and all said, “Go get your baby the shoes she needs!” It was wonderful! We are so blessed beyond words!

These shoes or AFOs (ankle foot orthosis) are for the purpose of holding Lali’s club feet in place before her first major surgery. Her club feet are due to arthrogryposis, so they are far from a simple case. Arthrogryposis makes those little feet want to curl back up and not respond well to treatment. In fact these last few days without a Dennis-Brown bar, her ankles have reverted! Accc! We’re getting the bar on Monday!

Well these new shoes are much lighter and made better than the industrial crap (new orthotic guy’s terminology, not mine ) we had before.

My only contention with these shoes is that they work too well. It has been hard for her to get into them because they hold her foot so much better and that can be a trifle painful. Novel idea to have orthopedic shoes that work, right! Good heavens. I’m still mad at Scope. :-/ 

Our first real socks EVER! 

A treat for me was not only did I get to pick out the color and heart pattern of these pretty shoes, I also got to buy my daughter socks for the very first time in her whole life! She may have had something when she was born to keep her feet warm, but they were never her size because her feet were severely deformed. Then when she was three weeks old she went into casts. But these little bobbysocks are adorable and cheaply found at Target. They are girlie colors and go well with her little shoes. They are even her size and the heal is in the right place (which I couldn’t say about the industrial socks with no heal that Scope gave us for the KAFOs). These socks are not special, just normal girlie socks. I LOVE IT! I LOVE BUYING SOCKS!

Also the last picture above was taken for two reasons: to show her deep knee dimple to the AMC support group for a discussion on the topic and also to show off her straight leg! You heard me! Straight! She was born with both knees bent in tight contractures. They were out to the sides like she was sitting cross-legged in my womb. I had complained a lot about my ribs hurting where those knees were, but my doctor largely ignored me and said that pregnancy was uncomfortable and that the baby will often poke the mother.  (She must have thought I was the biggest whiner… well, as a pregnant woman that was not far from the true. ) Both Lali’s knees came out in bad shape–both with large dimple deformities (that I find adorable now that they are made more pronounced by baby fat ) and one with open, bloody wounds. But those knees have been through a lot of stretching and have become much straighter. Her right knee is straighter than we had ever expected it to be in her whole life! 180 degrees being a straight line, Lali’s right leg is around 170 degrees (!) and her left leg is around 135 degrees. So much improved!

By the way, the same orthopedic doctor who told us that we should ignore her legs and not worry about doing surgery to straighten the knees because she would never stand or walk also told us that even if we did straighten her knees with stretching, they may not bend back. Simply stated, HE WAS WRONG! Her knees are straighter than ever and they bend back just fine. And if she stands one day (which I’m no longer ruling out), I’m marching her into his office and having her do one of her little wiggle-dances while standing on his desk!

PS: Sorry for getting this post up so late!