Archive for February, 2008

Ears pierced.

Monday, February 25th, 2008

 

Before

Those ears! :) They are big even when we’re not holding them out like that. Perfect for earrings. After a ton of research and getting her shots, Laelia finally got her little earrings! They are a rose color (her birthstone) and adorable! A little group of girls surrounded her to watch. Their moms were telling them that they got earrings when they were my baby’s age. It was cute.

I’d like to say this is a family tradition, but usually the rule was that we had to be old enough to ask for them (I was three years old) and it was three holes on one side and two on the other. (Which made buying earrings for my sister who was a bride’s maid in my wedding kinda hard.) I liked the earring tradition on mom and my sister, but I like things symmetrical so I only have the two. We’ll have to wait until Laelia is old enough to ask for five holes in her head before we do that one.

Getting Laelie earrings, a thing I wanted to do if I had a little girl, was very important to me. It helped me feel normal for some reason. This was a normal outing as a family (grandma in tow) and we had the normal worries about it that parents have. Plus her AMC was not a factor at all! Maybe that’s why it was so fun.

Okay fun for me but hard on her daddy. Even though baby did not even cry (until the lady started to mess with the ear), Charley still wanted to skip her stretches for the day and wouldn’t put her down for a while. He’s also been stressing over cleaning the area three times a day. He had to hold her when they did it too. I couldn’t hold her, no, he had to. He’s a very adorable father. :) He does better at doctor-related pain than this kind of optional pain, but IT WASN’T THAT BAD! It was barely a prick and she never gave it a second thought. She even slept through the night. So it was no big deal, but, to her daddy, it was scary watching someone who didn’t have a medical degree touching his baby. :)

Now I’d like to think that people won’t ask me if she’s a boy or girl anymore, but the other day  I saw a  boy around eight years old who had earrings in both ears. Gotta love my neighborhood. :)


Right before she does the second ear, the lady comments on the wiggly babies she had been piercing earlier that day and says in a sing song voice, “She don’t move… that’s good!” Well, if only she knew.

Praise God!

Wednesday, February 20th, 2008


I never thought this day would come. There were times I had given up all hope that she would move her arms or legs. I’m crying as I’m writing this. I’ve had my camera (set to video) glued to this child for weeks and she’s never moved like this. Even some of the amazing videos of her that I post are after hours of her not seeming to be able to do anything more than turn her head. It’s amazing that she looks like a typical child being wiggly. I’m just so thankful. I don’t know what else to say. This video says it all. Thank you, everyone, for being a part of this with us.

Straight and tall!

Wednesday, February 20th, 2008

These  are  great before and after pictures. Despite the  pain and hardships, seeing these pictures side by side really makes us appreciate what  the stretching and  casts and splints and braces did for our daughter. Enjoy!

 

Measurements of time.

Tuesday, February 19th, 2008

This is a collection of videos filmed this week. Laelia did a lot of firsts this week and we are very excited.  It’s looking like baby’s first word is going to be, “Yeeeaaaaaaaayyy!” since we tend to reward her with lots of “yay!”s. These videos warrant a  new special measurement of time.  As far as dates go, we already have AD and BC so let’s use  *DRDLMB.


First time Laelia holds up right arm while it’s weighed down with her day splint!
Video taken three days past DRDLMB.


Laelia moves her left arm! Keep in mind it is also weighed down with a splint.
Video taken three days past DRDLMB.


Laelia accomplishes a big kick for one of the first times!
Three days after DRDLMB.

If you think that’s something, you haven’t seen anything yet! Her therapist explained that there are tendons on her right arm that are pulling the whole hand down, and no matter how much we stretch her, the hand won’t be straight until she moves her wrist back on her own. Well today, four days since DRDLMB, she moved that wrist for the first time!

*DRDLMB=Day Retarded  Doctor  Limited My Baby  

Faith, Hope and Poo

Tuesday, February 19th, 2008

Faith: My faith has changed. I obviously didn’t stop believing in God all together as is evidenced by my anger with him. I never stopped believing that God was  strong, powerful and  mind boggling–that  he created my daughter (in a manner of speaking)  and knew she would have AMC.  But I stopped believing he  cared. After these days of one bad event after another… Watching  Laelia attempt to do something she can’t… Stares of strangers… Uncaring professionals… I wonder if  God is  all that loving or kind. So I tend to  nod when people talk of God as being just or pure or powerful, but emotionally tune out any “eye on the sparrow” talk.  And just as logic and emotion can be at odds,  emotion and truth can be at odds. But watching God’s  behavior affects what I think about his character. Maybe recently I should say his lack of behavior. Although that’s not entirely true. Sometimes I feel he’s there for me and sometimes he’s not. His whim I suppose. Or my filter.  I don’t know how to succinctly explain what I mean. All I know is that my daughter is a joy and all the things I want, I want for her. If God cares for her, why not help her? I mean Jesus didn’t have AMC! .. Of course, as I was reminded recently, humanity was  a bigger disability.

Hope: I had no idea how completely hope drives out depression. I also had no idea how much power I had given doctors to crush that hope. After Friday’s doctor’s visit, I gave up on my daughter’s future for 10 solid  hours.  It was scary.  I took the doctor’s view of  having a stump with four dead branches for a daughter–a dark thought for sure. Hope came back after one email from another mom.  (Don’t believe them!)  A few days later two moms, Sue and Ginny,  from  a church I used to attend in northern California, GCBC, got on a plane just to be with our family and gave me more hope. (Don’t limit her!)  I realized I need this hope more than oxygen. It’s the only thing that keeps me going.  

Poo: I love my daughter and I adore my husband. I don’t know what I would do without either one of them. It’s hard to believe God is uncaring when I see my husband’s goodness or my daughter’s beauty. Right now I watch  Laelie grin through a diaper change and remember the first weeks when those were  painful for her because of bent and twisted legs and feet.  Sometimes I think the greatest of these joys is being able to poo. :)    

Feeling like Job

Friday, February 15th, 2008

So my arm is killing me and I went to urgent care where they gave me muscle relaxers and said I had “muscle problems.” I argued, but the doctor gave me the you’re-an-idiot look like I was a pansy. She handed me a booklet called Neck Owners Manuel and sent me home. Okay. Then I went to a *real* doctor who was amazed I could sleep at night and he diagnosed me with acute tendinitis and bursitis. I got the most painful cortisone shot of my life (where they move it around under  the skin… okay I *was* a pansy for that), but my arm and thumb are still asleep–been asleep for five days and  four hours.

I’m not allowed to hold my child or lean over her. So Wednesday Laelia’s  grandma, Christina, flew down here on the next plane out. I called my dad to say I  desperately needed help and couldn’t move then his wife shows up in San Diego about  five hours later!    

I called the breastfeeding hotline and just got the go ahead to breastfeed again… only now  Lays wants  her milk in a  bottle. The formula we used while I was on the muscle relaxer made the baby’s stomach really upset. She threw up a ton all over her daddy and fussed all day long while making noises  in her diaper.

Actually I got sick as well with  bad diarrhea. So between baby and me,  we were pretty fussy.

I also have missed work this whole week and feel worthless.

So bad day. But it got worse.

We switched orthopedic doctors today (Friday). This new one also does not believe  Laelia will walk either, but actually explained the physicality behind that belief. Whatever went wrong inside me, made it so that her muscles didn’t grow normally. The doctor said her AMC is like Polio, we don’t have a cure and don’t understand why she doesn’t work right. So even if she were able to be straightened out, she doesn’t have the muscle to walk. Even if we did a muscle transplant, the muscle wouldn’t work. Even if we could get her to stand, she would not be able to do so once she got to be around 60lbs since she won’t be able to hold up her own weight and her muscles will not grow with her. She also does not have the arm strength to use a walker or wheelchair. She’s not  quadriplegic since she can twitch fingers and slightly bend elbows. Once again we find ourselves crying out to God and stunned with grief at the thought of a little girl who won’t dance on her wedding day or who can’t go to the bathroom without assistance.  
 
I guess our other doctor knew this but just didn’t want to break the news? Our new doctor actually went and got Laelie’s x-rays out and explained them to us. Based on the x-rays, she will need major surgery very soon on her feet. But I’m just not up for that. I liked my pseudo-hope and now I feel like  it’s gone. Like it says in Proverbs 13:12, “Hope deferred makes the heart sick.”

I  got an email from another AMC kid’s mom. It was titled, “Don’t believe them!” Her daughter does a lot more than doctors thought she could.  I told her that meant a lot, but I wish  one bloody  doctor would tell me that! I told her, “I used to be so happy with every little gain she made, but now I’m depressed because so many doctors have stretched her life before my eyes and what I see is a power wheelchair and help going to the bathroom. I want to hope again and I want my joy back.”    

Back at the ranch…

Blissfully unaware of what was going on around her, Laelia discovered  that her voice had an upper register  last night (Thursday). During the depressing yet informative  doctor’s appointment this morning, she made lots of high pitched meowing noises. We were discussing heavy, stinging facts of her condition and the whole time Miss Noisy Pants made every sound in the book.

So very tired.

Tuesday, February 12th, 2008

Charles here.  

So I guess Alexis mentioned that Laelia wakes up several times a night. She screams out, and then I go over and pick her up, and she stops crying immediately and falls asleep in my arms. It’s like she’s not really waking up at all, but sleep-screaming. Or something.

I think I figured out why she does this. It’s not really a pain thing, per se, but a comfort thing. She will thrash around in her sleep, much like her daddy–for her this consists of turning her head one way or the other, and arching her back as much as possible. Well, she isn’t able to twist as much now, because the shoes are keeping her in one position. So she does her sleepy thrashing and isn’t able to move, and freaks out, and then gets held and goes immediately back to sleep. Hopefully she will adjust to the braces soon, and not do this as much. I am so very tired.

Week Recap

Monday, February 11th, 2008

Sorry the updates are not as frequent. Besides creating a new album  of baby pictures, I haven’t been able to get on the computer much.  This weekend I started to get some severe pain in my neck, shoulder and  shooting down my arm. By Sunday night it was unbearable and we spent the day (as a family) at the urgent care where I was given an arm sling, told to use my neck brace and sent home with a prescription for a muscle relaxer that I can’t use while breastfeeding. Today my entire right arm is asleep down to my thumb and every time I hit this space bar it tingles. I can’t lift my child or bend down to her. I can’t turn my head. My right bicep was actually spasming  so  bad it physically  raised my sweatshirt and when Megan came to babysit Laelia today she ended up babysitting me. :)

All that to say that I have an excuse for not posting these last few days, but as for the rest of the week,  I was just busy.  Actually that Sunday/Monday (backdrop of my last blog post) was pretty rough. Major depression hit and things were dim. We got a lot of emails and offers of prayer and support. Monday really sucked bad. Makes me thankful that time is linear and life goes on. Here’s the run down in brief of the rest of the week that didn’t suck so much.

Tuesday: Got a great report from our PT/OT team. Laelia is looking good. Dr. Jill praised Tammi and Megan and Charley and me for doing her stretches so well. She  wants some pictures of Laelia when she was so little and bent to show alongside a current picture since she looks so much better now. Dr. Jill lectures at conferences and is very familiar with AMC. This was very encouraging. Laelia’s every finger twitch was praised and celebrated. I wish more doctors focused on her progress. I went home and had a great time with the family. Here’s a random video from that day of baby laughing (and me laughing too for those of you who have forgotten what that sounds like).

Wednesday: Dawn from Early Start came over and we did Laelia’s stretches together. Dawn revealed one of her super powers: she had actually done another AMCer’s stretches once upon a time. During a difficult stretch, Dawn broke out with The Itsy Bitsy Spider complete with large hand motions. She is the master of her craft. :) We ended the day with some tummy time. I think we may have done too much that day. :)

Thursday: I was excited because this was the only day with no doctor’s appointments or anything. Well because I’m a masochist  I called Orthotics to check on the status of Laelia’s braces.

They had them. I was not informed.

Being the rational person that I am, I chose to believe that the doctor “was just about to call me” even though “she had left for the day” and I would be there to get the braces in ten minutes. Oh no, we can schedule an appointment but not until eight days from now. Can’t I come in now? No. Can’t another doctor deal with me? No.

Oh and I had to have my orthopedics doctor take off the casts (why?), but  orthopedics didn’t want to see me until a week after these people took off the casts. “So get that appointment and work it out so that you do that right before you come over to  get her braces  in eight days.” I asked if I could call them back and then I banged my head against a wall, called my husband to cuss them out behind their backs and then screamed. Once calm I resumed, “Hey it’s Laelia’s mom again. Listen I need this last week, I was told by my other doctor that you had the equipment there and you’ll be taking them off. I’m free now and almost every day after  work although that will mean cancelling with other doctors.” So they call my doctor’s cell and she calls me back and says it can only be done tomorrow during my work hours by someone I didn’t know. Fine. Grrr. The casts  were bothering her and  had slipped so I had no choice. Also she had shots planned for that day  and I was told they  had to give the shots  on her thigh which was covered in casting. Monday’s depression  was back.

Friday:  Called work. Went to get casts off. Then got braces.  Which hurt. Then went and got shots. The nurse was cute and was all worried that hurting my baby would  upset me. Hahaha.  My kid, the tank, barely flinched. She cried a little and then was fine.  Five shots later and  Laelia was like, “What that’s it? I’ve been through  the tornado and you  think I’d be afraid of  the fan? I laugh at you mortals!” “She has an amazing pain tolerance,” I explained.  Her doctor gave her the clean bill of health and she grinned for him. By the way, Dr. Schwartz loves to get on Charley when he’s not at an appointment, even though it’s in the middle of a workweek, in the middle of the day and our kid has more doctor’s appointments than hair on her head. Despite all that it’s always, “Where’s dad?” I love it. :)

The bars on the windows are so I don’t escape.

All in all, the day was okay, considering. Laelia was miserable, but took to these braces much better than the others. They still don’t keep her heel in place and are unnecessarily painful when they slip. But her pain levels aren’t as bad as before. She still wakes up several times a night to scream out in surprised pain. It’s like a knife to the gut every time. She only requires a little attention and then falls back into a deep sleep.

Saturday: My friend, Lauren, recently returned from Romania to get hitched. Lauren called me to announce the news several months back to which, all thoughts being with her, I replied, “Laelia has just the outfit!” I’m sure the bride looked alright on the wedding day too. :)

Hi Lauren! Happy Wedding!

There was no flower girl in this wedding, and I’m sure that’s only because Lauren had yet to see how pretty my kiddo was in pink :)… of course since that’s Lauren’s least favorite color… anyway…  

One other great thing about this day was all the people who came up to me and remarked how pretty my baby was. What? Not how special? That’s right! I took off her braces (that were making her cry 24/7 which is forbidden during a wedding) and splints. Her hands only look awkward when you realize they’re stuck that way. One person came up and lifted a little hand in  their finger and then remarked how sleepy the baby was since Laelie didn’t grip her finger or push against it. I know it’s probably foolish to be so happy that someone mistook Laelie for a typical, albeit sleepy, baby, but I was thrilled.  

It wasn’t until a bit after the reception that I started to realize that my pain wasn’t going away and my whole right side was stiff, but now you’re all caught up. Oh and Saturday  afternoon I shot this great video, taken once again while my darling husband was unawares. They are both sound asleep, but when Charley moves his arm in sleep, Monkey-Do copies it. I love it. :)

Get over it.

Monday, February 4th, 2008

It seems like people only remember that  we’re in this terrible situation and have empathy for us as long as they are personally affected by the shock of hearing about our situation. That shock fades. Our hardship doesn’t.  To these few, it’s like  a one time tragedy, and I swear they wonder why we’re not over it yet.  (I’m pretty sure I have thought the same things after hearing of some family struggling or a child with Down’s Syndrome. But now I know better.) In reality,  I’m  a shell of  the person I was. I often  get  numb instead of  sad, and tired instead of angry. I still deal with the people in the grocery store who stare or the people at the  doctor’s offices  who don’t know what to say.

Sorry for everybody who saw me break down on Sunday. A few people actually asked if they had done or said something to me.  Nope. Nada. I once  broke down before a doctor’s  visit for the simple reason that I walked by a handicapped parking space on my way in the building.

It’s probably just been harder with my time split between my daughter and work. This is  the hardest time in my entire life. I don’t get to sleep and I don’t get a break. And I blog about it here because no one  really wants to hear about it.  I thought work would be a good  distraction, and maybe it will be. I can  pretend that my life at home doesn’t  exist for a few hours and then come home feeling guilty. But times like today, it’s not as good a distraction and I end up feeling worse. Charley has experienced the  same thing.

Don’t get me wrong. People have been wonderful and helpful and encouraging and supportive and great. Just can’t say that enough.

But Charley and I have been losing our faith. Not because of our daughter or her condition, but because of life. That’s one of the things we were dealing with on Sunday. That just makes everything harder, you know.

..  

I was at the hospital a long time today. Just got home an hour ago. I watched professionals hurt my daughter for what seemed like forever. The reason for this pain was due to my insurance losing paperwork–  which kept Laelie in casts– which needed to be  redone– which included sawing them off and working her into new ones– which hurt her– which could have been avoided if people had paid attention to their paperwork– which would have meant they needed to care — which they don’t. I don’t even ask why anymore; I just drudge through it.  

Did you know?

Saturday, February 2nd, 2008

Did you know that kids with arthrogryposis end up having above average intelligence? I don’t know how many times I’ve been told that by doctors and other parents. I actually asked our pediatrician if that was because instead of playing football, they instead  read a book. That’s the age old question: nature or nurture. Are they smarter because of the arthrogryposis? Or are they smarter because of the limits of arthrogryposis? Most if not all say it’s the former. Well sufficed to say, you wouldn’t want to be on the show ‘Are You Smarter Than a Fifth Grader? How about one  with Arthrogryposis?’ Because we’re probably not. :)

Charley was very encouraged by this news. He values brain power over body power. I mean the kid wasn’t allowed to climb trees! Unlike my  ball games, he did reading contests. (He actually liked Awana for the  book work  NOT the games… yeah weirdo.) :) So I catch him trying to “genius-up” the baby all the time.

This is me recording  (unbeknownst to my  husband) a simple game of cards turning, dare I say it, educational. (Eww the E word.)