My baby girl just squeezed my thumb today! It happened while breast feeding. I’m not used to her moving at all and didn’t know what that feeling was at first. Then I looked down and her little fingers (not her thumb which is stiff) that were wrapped around my thumb were squeezing. She was looking in my eyes at the time. I squeezed back. I could live in this moment forever. My baby moved her hand for mommy.

Charles here.

Thank you so much for all the support you have provided us through calls, emails and guestbook signings. It means so much to us to know we’re being held up in prayer. Alexis reads the guestbook and just cries. It really lifts her spirits.

Keep praying; we need it. Thanks.

Charles here.

The medical bureaucracy is a hellish place to be. I received a note in the mail from Children’s Hospital saying they need my insurance information (which they already have) to schedule my appointment…for something. When I call over there, nobody seems to know who might have sent this letter. Their best guess is someone who is not in the office and whose voice mail box is full. Is there a way anyone might be willing to scribble a note and leave it on her desk? Of course not.

So now my daughter’s *urgent* medical treatment is being delayed because nobody is willing to lift a finger to help us. God, give me patience. I will do the best I can with this and leave it in your care.

Okay can we say, “Major Abdominal Surgery,” Charley???!!! One diaper and I’m feeling faint… um… pain… um… in my stiches… yeah.

Number of times I have breast fed: 800

Number of times Charley has breast fed: 0

So there!

Charles here, with something that I just have to get off my chest.

Total number of diapers that I have changed without assistance (a conservative estimate based on a close reading of the diaper logs): 35
Total number of diapers that my wife has changed without assistance: 1

Oh yes. Let the smack-talking begin.

Charles here.

You know, the last week has been pretty wild. We’ve celebrated the birth of our new daughter, tried to adjust to taking care of her, and have been dealing with the news about her arthrogryposis all at once. We’ve been feeling so much joy and sorrow (and exhaustion) all mingled together.

But there has been a lot to be thankful to God for. We have a beautiful daughter, who as far as we can tell is completely mentally healthy. And her prognosis looks better than a lot of arthrogryposis patients. (Many of them have heart defects or problems with their nervous system that can be life-threatening.)

Also, I feel like we got the worst case to begin with; it only gets better from here. Her joints are as constricted as they will ever be; as she gains flexibility and muscle tone over the years, she’s going to hit developmental milestones (crawling, potty training, etc.) just like any other baby. She just may not hit them as fast (or as many of them) as a normal baby…but her condition only improves from here on out.

You know what diagnosis I would hate to get? That her little body was going to deteriorate and decay until she died. And yet, that’s the diagnosis we all have. Our bodies begin to break down almost before they are finished growing. I need a new incorruptible body, one that matches the way my soul has been restored. So I’m not *as* concerned about the problems she’s going to have in this body–we all have problems in this body. I’m more concerned about making sure she has the hope of that new body as well.

Thank you to everyone who signed the guestbook or has otherwise sent us your support. It means so much to us to know that other people are praying and thinking of us.

Dad (Laelie’s Grandpa) left tonight and mentioned a comment on my CaringBridge site before he left. I didn’t know what he was talking about so I read the guestbook today for the first time. It felt so good. It made me realize that although the depression makes me feel like I’m falling through a dark hole all alone, but I actually have support. It makes me feel better when I hear other people are sad with me or are grieving over Laelie’s situation. That I’m not alone. That it’s not alright. But there’s hope. And I loved when Rachel offered to kick the sh…stuffing out of anyone who didn’t think my daughter was beautiful.

I’m glad this site got around. It’s nice to know that people know without having to tell them. It was miserable when we were in the pediatrician’s office and his nurse asked us the normal questions like “Does she move her head away from your shoulder when you burp her?” Yes. “Does she tip her head up?” Yes. “Does she move her arms when feeding her?” No. The nurse looked up at us and just repeated, “No? What do you mean ‘No’?” sounding confused. I had to explain once again to someone that my baby was special. It’s just good to know the word is out and people care.

Laelia’s physical therapy session was today.

When they told me that there was only 500 cases of Amyoplasia Congenita Disruption Sequence reported in the last hundred years, I still thought there would be more children with Arthrogryposis in San Diego and the doctors and physical therapists would know what to do.

We went into Children’s hospital and our physical therapist looked like a teenager. She moved baby Laelie’s arms/legs/feet/hands/hips while she screamed. I was balling so badly. I was shaking. Dr. Teenager didn’t give us any hope or any long term plan. She talked of small minor improvements at best and surgeries. She had *never* worked with Arthrogryposis patients and pronounced it “gryposis” instead of “groposis” which is how it’s spelled but shows a lack of familiarity with it. It was like she read it out of a textbook right before seeing us. They only had two other children come through with Arthrogryposis and only one could walk. His (the walking kid’s) physical therapist said it was nothing she did either, he just could. It turns out that babies with Arthrogryposis that have the leg joints stiff in a straight, outward way are more able to walk. Of course our baby girl has the wide open legs and hope seems dim.

I’m so depressed.

I can’t eat. I have diarrhea and I’m throwing up. I try to eat so I can breast feed but it just makes me more sick. On top of the hormones in my body going crazy, my emotional state at a constant flux, grief over my daughter’s body, 2 and 1/2 hours of sleep last night (literally) and stress to feed and take care of the baby, I also have to work her little sore spots. She just cries and cries. I feel like I can’t do this—I can’t go on.

Then there’s the natural mother instincts. It keeps me in-tune with all her needs. I hate it, but it’s so necessary. When she can’t sleep I can’t sleep. I can’t get over how intense this feeling is. Actually the cat will cry and I’ll lose it.

I naturally act like a mom. I rock her instinctively and I burp her when she’s unhappy. Actually Charley passed gas in his sleep and I already had a hand on his back and my hand began to burp him in my sleep. He thought it was funny and just let me do it.

The mom instinct is what made me ask the doctor how old she was (26!!), her qualifications (one year out of school) and then I asked for another doctor. I made a stink about getting someone who knew Arthrogryposis patients and what they’re capable of. I have never had to be someone’s advocate before. I did all this like a real champ… while balling.

Later today Charley called our pediatrician (Dr. Schwartz… “May the Swartz be with you”)and he is going to try and talk to the parents of another Arthrogryposis kid in his care so they can recommend doctors they liked to us.

Dad and Christina (Grandpa and Grandma) are leaving tonight. I tell myself I’m going to be able to live like this. I need help but I need a break from help too. I need to be able to do this myself with Charley. We just don’t know what we’re doing. I need people mostly to tell me her crying is normal and make light of it. That keeps me from panicing. All newborns are suppose to cry, right? Mine just also cries when you move things on her that hurt. It’s so hard to know the difference. For instance, burping her upset her and she cried every time. It turned out that I still had My Breast Friend on (a little shelf to keep her at breast level) and she would be on my shoulder but her feet would be on the shelf and it was hurting her. Accccc! But then there are times when she is just fussy and I think she’s dying.

Right now Charley is working her little arms. She has a little pout on her face that makes her look like a bulldog. Charley tells her that she’s fine and not to cry and so far she’s not. When she fusses then I start to cry. Dad says he prays she never learns the power she has over me or she’ll be eating cookies for breakfast everyday.

I love my sweet little Laelie Bug. God, just make her whole.

I have a physically disabled daughter. It still hurts to say that. It started out a C-section because she was breech. I noticed when they pulled her out that something was wrong. Her body was bent and twisted. They had a hard time telling whether she was a boy or girl because they couldn’t pull her legs apart easily. Right away the mirror they were holding up for me to see her was taken away. Later she was taken away to be examined.

I didn’t get her back for five hours.

I was shaking so hard on the operating table. I just wanted to see my baby. The nurse said there was a “complication” and that it “wasn’t your fault” and “there was nothing you could have done.” But that’s all the information I was given. I couldn’t imagine what she was talking about. Every hour that went by was torture. I was throwing up and crying. I knew something was really wrong and I just wanted my baby.

When I finally got her she was wrapped up and all I could see was her little face. I couldn’t believe that I had a human life right in front of me. She was so little and so beautiful. They took her away again and I could finally sleep.

It wasn’t until later that I saw her whole body. Never having a newborn before I didn’t know exactly what was wrong. Her body didn’t move. Her legs were curled into herself and her arms were missing the hands (which I didn’t notice until realizing that her wrists were just terribly bent backwards). It was scary.

She was diagnosed the next day. The doctor who wrote the textbook on it came and broke the news to us. I started to cry, but was really in too much shock to really understand fully what he was saying.

A student came in halfway through breaking the news with a slight look of excitement on her face. She was told this was a very rare case and she needed to “observe.” It was a little morbid. The specialist gave a look of half-hidden disdain and announced sharply that he would not be showing her the baby’s features. She seemed a little bummed. Vulture.

The doctor leaned across my bed to break the news. He spelled things out and wrote them down. Every time he asked if we had questions, we didn’t know what to ask. We asked if she would be able to walk. He said he didn’t know. I cried some more.

It hurt to cry. I mean every time I sobbed the incision hurt so bad. My guts felt like they were falling out. We turned away visitors. I couldn’t blow my nose. Charley kept getting me wash cloths to mop my face. He was crying. It felt like when mom was killed.

We both would say we didn’t really “bond” with our baby until the diagnosis. Then we would have taken her pain on ourselves. She was our beloved only daughter and we’d only known her a day.

Now my every emotion is tied up with her. When she breaths funny (as babies do) I hyperventilate. When she cries, I cry. When she fusses, my chest aches. I can’t sleep. I have nightmares that she’s in pain or hungry.

I am so depressed. I feel like I can’t do this. Sometimes I’m afraid to touch her. We had problems with our insurance and couldn’t get her physical therapy for over a week. I felt helpless.

Everyone tells me that she’s beautiful. I feel like it’s just lip service. I mean she’s so obviously deformed. But when I look at her face she is beautiful. When people say she’s perfect I get upset too.

The nurses said I should look at the other babies in the nursery to get an idea of what hurts our special daughter and what is normal baby crying. I tried. I couldn’t. Those babies looked so whole, so normal.

We went to her first hospital visit today. There were so many children walking around. I walked passed the handicapped parking space in front of the building and cried.

I just keep thinking that I can’t do this. I know I can. But if I could just get over the depression and grief it would be so much easier. I want to feel normal again.