Archive for August, 2008

I love my baby!

Sunday, August 24th, 2008

I just had the best day with my baby and I just have to tell everyone about it! We played for hours and sang songs and read together–it was great! She is sleeping now and I miss her. :(

Today I did her stretches just twice, but both times, despite being a little stiff, she wasn’t too fussy. I took big breaks and gave her lots of attention and distractions. She only cried through the worst three stretches, and was even smiling through the other ones! I did her stretches at church in the courtyard while other people and their kids distracted her. She didn’t cry at all! Of course I skipped those last three. She was such a good girl though.

This morning I figured out a new use for her supination splints by stringing up her arms for some elbow bending. The soft materials are much better than her hard elbow splint. I’m pretty much a genius. :) Just got to figure out the blood circulation problems.

Lali  likes kisses on her tummy and tickles on her toes and anything that involves hanging upside-down. I showed her a picture book with baby animals and after I said each of their names, “giraffe, bear, lion” she would squeal the same syllables, “squeal-squeal,  squeal, squealion.” I’m in love with my baby!!!

This weekend  Lali gripped my fingers strong enough in each chubby fist to support being lifted into a sit-up. We were thrilled she had enough hand strength! Then Charley and I  tried to teach her how to snap. (Too soon?) She just stared at us like we were nuts. This  went on  a while. :)  

I found out I like spelling her nickname  “Lali.” I just like it. Still pronounced LAY-Lee.

My baby is the bestest ever.

The end. :)

More babies!

Friday, August 22nd, 2008

Joshua David Circo

He’s finally here! Megan, after a bit of a scare (more than a bit at the time) gave birth to a perfectly healthy and perfectly  handsome baby boy via  emergency C-section.  He’s so perfect! I love his little fingers and his little ears and his little nose and his little everything else! And look at that perfectly round head! :) He has Megan’s nose and John’s forehead, but he didn’t open his eyes much for me so I can’t tell on those.

Megan, as you all may recall,  was Laelia’s babysitter every Monday for months and months. She did Laelie’s painful stretches, physical therapy, played with her and went through the switch from milk to solids with her to name a few things. Near the end, Megan did Laelie’s stretches awkwardly bending over a giant tummy. :) We’ll miss her but we’re excited for her too.

Unfortunately Laelia and Joshua haven’t met yet! A security guard stopped us on our way up to visit and told  me NO BABIES! Well he was nice, but he told me to go home since Charley wasn’t there yet (more on that later). So  Joshua’s daddy, John, had to come  out and watch Laelie while I visited with Megan and baby Joshua. It was a baby switcheroo. :) Then Charely  finally arrived  and we switched back. So Laelie was stuck in the waiting room with other kids (as old as twelve!) who were banned from seeing new moms and new babies.

Boooooooooooooooooooooooooored!  

After visiting with baby Joshua, Charley took me to dinner to celebrate all the good things in our lives right now. Recently we heard that Laelie’s arthrogryposis was one of the worst cases of muscle atrophy they (certain medical people)  had seen. There are worse cases  in general, but of arthrogryposis kids, Laelie is not  as functioning as we would have liked. Although they did say that they  marvel at the fact that we got her straightened out as much as we did. And that’s with stretching and serial casting only, no surgeries on her upper body yet! We’re still hoping  for the best,  but  it has been settling in our hearts that  our daughter may need some extra help in life. Still I am amazed at all she had accomplished in her short life so far. But this news and some other minor things we learned (that I’m not going to focus on now) were very hard on us–Charley especially. So we have been trying to focus on all the good things. And we couldn’t think of a better place to celebrate than the hospital cafeteria  where our good friends just had their new baby.

Well,  we were going to go to the hospital cafeteria but Charley had gotten so  lost on his way to the hospital that he  was parked too far away. He told me that he didn’t want me to feel like I was the only birth that he got lost on his way to. :) (If you haven’t heard the story, Charley was driving me to the hospital to have Laelia and my dad and Christina were following him. The hospital is right down the road and we had been there for ALL of our childbirth classes. So of course he got lost. :) Did I mention it was right down the road?! Seriously. :)) So Chili’s  got us.  It was a little past Laelie’s bedtime so we asked for a quiet booth so she could sleep through dinner.  Later we  joked to the waiter, “We asked for a quiet table,” and pointed at our happy daughter who was busy singing (squealing?) a happy tune.    

I’m having a blast!!!

While Megan is not coming by anymore, we still have Tammi. One thing that came up during our celebration-of-positive-things dinner was that Tammi is in her nesting stage of pregnancy. Woo hoo clean dishes!  At first it was just nice that Charley was finally doing more housework… until he thanked me for doing it. Then we figured it out. :) Ah nesting, I remember  that burning desire to bleach my bathtub at 2AM. Good times. We’re trying hard not to take advantage of the situation. :)

Another positive thing we are thankful for is that we have Chelsea coming over doing Laelie’s stretches three afternoons a week. It’s been nice not having to worry about those. Actually when she started doing the stretching, everything started to get right with the world. It is amazing how much a helpful and willing person can change the mood of an entire  household.  

We also talked about Laelie’s shoes during dinner. We were looking forward to throwing them away the next day and getting her new AFOs.  But when I called the orthopedics people up to see if  they got the shoes I was informed that we could not get them that day.  Why the heck not!?  I wanted to know. The earliest the orthopedicist could see us would be Tuesday the 26th  right before occupational therapy. Turns out this company is family owned and  operated (one of the things I love about it) and the receptionist/wife of the orthopedicist, you guessed it, had a baby! Haha! I guess I’ll let it slide this one time. :)

And that’s when I realized that me and  the people in my acquaintance are directly responsible  for overpopulation. Yeay for babies! :)

What to say?!

Monday, August 18th, 2008

I have talked with four people… oh wait I almost forgot the obligatory Laelia pictures.

My two teeth!

 

I dropped my toy! :’(

No seriously Mom, don’t get up, sheesh. :)

I love Megan’s bed! Zzzzzzzzzzzz.

Better? :) Okay, where was I? Oh yes. I have talked with four people (all strangers) this last month while out  and about who  saw my daughter, guessed incorrectly at why she was wearing shoes with a bar and then said, “Oh my cousin/niece/son/friend had that bar and now he/she does gymnastics/baseball/soccer/dance.” :) Of course I’m not going to explain in a brief encounter that my daughter actually was born with little to no muscle and multiple joint contractures. I just say, “Oh wow that’s great,” and keep walking/shopping/eating. I guess lots of kids have  DB bars on their feet for different reasons.  Good to know.  Usually I don’t go into Laelie’s disability unless people seem really interested. It’s not that I don’t want to talk about it, I do! It’s sometimes like the elephant in the room, and I want to talk about it (not all moms do, but I do), but it makes people  SO uncomfortable to hear about arthrogryposis and amyoplasia. First I hear about how  they’ve never heard of those conditions. *sigh* Yes, I realize they are rare. No, there is no cure. Yes, they do exist. No, it’s not like your niece/daughter/cousin/friend…  bleh. Thankful I’ve  recently met great people who have not turned our conversation into a tragedy. They seemed interested and were curious, but didn’t gasp audibly or change the subject quickly.

The best thing to do is to listen. Asking questions like, “How does that work?” or “How does she react to that?” Instead of, “What’s wrong with her?” or “Why does she look like that?” makes all the difference. It’s a subtle difference, but one way of talking separates the child from the disability. That’s what I want to hear.

Actually I have spoken to a couple other moms who feel lost in what to say when someone asks about their kid’s splints or whatnot. We want to be treated like normal, but it’s not normal. We don’t want  people to say they’re sorry, but sometimes we want them to  feel sorry. We want  them to act like nothing is  wrong, but not blow off the disability either. We don’t want to hear about some person  they knew  who had some little tiny thing wrong with them that required some dumb little surgery and now they are 100% better, but we want  them to be able to talk to us about their kids. It’s a weird balance. And the question remains, Is it better to say something than nothing at all? Usually. It depends. If the only thing you can think to say is, “God planned  for this to happen,” or “You should be happier, at least it’s not fill-in-the-blank,” then maybe it’s best to just stand there looking uncomfortable. :) Hehe. Okay no I’m joking. :)

I found a  little something online  about how to talk to parents of disabled kids. But once again I found a list of don’ts. Don’t ask the following:

  • What’s wrong with her then?
  • Didn’t you have the blood tests when you were pregnant?
  • Did you consider having an abortion?
  • How long do you expect her to live?
  • I’m sure you’re glad your other child is normal?
  • Is it hereditary then?
  • What will you do when she’s too big to manage?
  • When she grows up will she be normal then?
  • Can she walk, talk, crawl, speak etc.?
  • I have heard that this type of diet can help children with this handicap
  • Yes well you may say, “That’s obvious! I would never say that!” But let me tell you now, Laelia is only ten months old and I have been asked in very similar language every one of those questions, except for the “aren’t you glad your other child is normal” one. Instead  I was tentatively asked, “Do you have.. any..  other  children?”

    So I searched some more online and found another website from another mom with a daughter with the same kind of arthrogryposis Laelia has. Actually I’m getting a good picture of what Laelia will look like in the future. And while I want to make a disclaimer and say I don’t agree with everything on this website, I found  one link very helpful. It was called Be Smart!  It is just an honest mom talking about how she wants her daughter to be treated, and–surprise! surprise!–it’s how any mom would want their kids treated.  One thing was  how it’s not good to talk about/ask about the child right in front of that  child!  These  kids are smart and sensitive! Other stories were about living in the culture of the deep south and I find California much more enlightened comparatively. But I’m totally biased. :)

    But my favorite site was Abby’s.  Here is where I found the most complete information about what I was about to face when Laelie was first diagnosed. It was very helpful for me, although Laelie’s case seems to be a bit worse than Abby’s. But then again there are cases much worse than Laelia’s out there.

    But back to our original topic of what to say to someone who finds themselves a parent of a disabled child. It seems there are dos and don’ts that change with the circumstances. At the very beginning of grieving, a lot of things can be taken the wrong way. When a mom is feeling a little better, they usually only see your love and kindness even if you say the “wrong” thing.  

    Charley says that some of his friends just listened and that was most helpful. Also it’s  easy to screw up giving advice, even good advice. Usually it was better to avoid advice-giving. Charley also liked hearing, “Well you’ll be  a good father,” or “Well we know you’ll do everything you can for her.” That type of thing that implied, without evoking pity or a lot of wincing expressions, that he cared about his daughter. Asking about the child is always good. Even when you hear answers and you don’t know if that’s a good or bad thing, it’s okay to ask, “So how do you feel about that?” Like someone would ask how Laelie is doing and we would say, “She moved her arm for the first time.” And they wouldn’t know if we were celebrating or grieving! Sometimes it was both! It was bitter-sweet. Yes, she hasn’t been able to move her arm a lot, but oh my dear lord, she finally moved her arm!

    Actually it was always okay for people to say to me, “I don’t know how to  ask this, but is okay to ask you about this?” As long as an effort was made to show sensitivity it was okay. But be careful because rarely is a parent going to say, “No, you can’t ask me!”  Just follow their subtle cues. Like if they  respond to your question  with some round-about answer then stop asking. They are probably trying to avoid the question.

    It is always appreciated to look into a child’s eyes and compliment the first thing you love about them. :) Of course I did hear a woman at Children’s Hospital once going on and on about how she didn’t think a child was good-looking so she just said, “Oh look at you!” If you have to say that, don’t announce later the reason for it. Sheesh.

    What helped me the most were the people who told me they were thinking and praying for me and my baby. They weren’t afraid to hold her. They weren’t afraid to be by my side as I grieved. Who avoided giving advice and only asked hard questions after Google failed to answer them first. I loved to hear hopeful, positive things like, “She will do so many great things!” And I heard those things until I believed them.  

    She will do so many great things.

    Her life has so much purpose!  

    She will touch so many hearts!  

    She will bring so much joy!

    And she did.

    Babies!!!

    Monday, August 18th, 2008

    This has been a week of babies! Laelia got to hold a newborn for the first time this week. Here is little Jane Anne Marie in Laelia’s lap giving her a well-deserved raspberry. :)

    Mommy always tells me my face will stick that way.

    Tell me I have more hair… right?!

    When I set  baby Jane Anne  gently onto Laelia’s legs, Laelie started to arch her back to try and swing her arm over the baby. It was so cute. Of course if I had allowed it the next thing she would have done would have been to grab whatever she could in a fist and then swing her arm again and again beating the stuffing out of poor Jane Anne. Believe me, I’ve seen this little one with our cats. :)

    Next we visited Megan and John on Sunday (Megan’s due date) to see if her baby was coming. Even though there were contractions all day, they were never consistently closer than about six to ten minutes apart. Laelia is still waiting for her tummy friend to come out and play. We did see some tummy acrobatics, but no baby. :)

     

    Hanging with the girls…

    Whoa! Where did you come from?

    Then Cara and Paul came over and we got to see baby Isaac again. This time, though, Laelie got to see him up close. Actually she started to head butt him! Click here to see the video of some loving headbutts. :) The only difference between headbutting Isaac and headbutting her teddy bears is that the  teddy bears don’t try to grab your face when you’re headbutting them. :) When we first got there, Laelie was making those “I want it!” cries that she does when she sees a kitty. But this time she wanted the baby. We did put their hands together at one point. That seemed to make her happy. :)

    Then Tammi and Rodney showed up with their tummy baby who is not due until October 4th (day after Laelie’s birthday). I think with a room full of people it was nice for Laelie to see Tammi since she spends lots of time with her. She seemed to be thinking, “Phew, a familiar face,” when she saw Tammi, and then went noiselessly into her arms. :)

    As far as I’m doing, it’s weird to be surrounded by all these babies and knowing not one of them will be like mine. Actually I could spend a month in a hospital full of babies and not one would be like mine. Sometimes I forget what normal movement looks like and am amazed at what my friend’s newborns can do that Laelie will never be able to do. She will move, but she will use technology to help. Of course by the same token, there are a lot of things that Laelie will do that none of her new friends will be able to do. Like move a wheelchair with her head or have  cool gadgets or get to go play at a therapist’s office once a week. It reminds me of when my friends had braces, and even though braces are not fun, I sure was  jealous! :) They looked cool and I wanted them too. Maybe it will be like that.

    I did notice myself taken aback when I walked into Sarah’s hospital room and people were celebrating instead of grieving. It was amazing! But at the same time, I had not realized that I was subconsciously gearing myself up to comfort instead of cheer. I’m chalking it up to not having been in a hospital room since my experience. The smells and sights were the same. There was even a white board and one of those portable bassinets and the  IVs, etc. like my room had. At one point when talking about the C-section  incision and how it’s hard to laugh, I mentioned how it was hard to sob, but immediately retracted that and changed it to “sneeze” when I realized just how depressing that sounded. But that’s all I did in  my hospital room  was hold  a pillow tight over my stomach while sobbing. And darn it that hurt! And I wasn’t able to blow my nose because of the  incision so  I mopped my face with washcloths. So now  I’m thankful that I have some good hospital/C section memories even if they are vicarious ones. :) Yeay! That means a great deal to me.

    One great thing about support groups is that you meet people in your situation and you feel like this is normal. It happens that the  people who find my website have just found out their baby has some long unpronounceable condition so they google it and find me. So a lot of my new mom friends have special babies who don’t move much. Now I have my San Diego friends all having babies and it’s weird that they are  all so wiggly. But I wouldn’t want them any other way. It’s just a jolt, like remembering again oh yeah we’re special.

    But I have deeply enjoyed holding and cuddling Laelie’s new friends. It brings me so much joy. I love it! It makes me want another one. (Note the terrified look on Charley’s face. :)) Knowing I can feel a pull of love for some little one who is not even related to me makes me certain that I could deeply love an adopted baby. It makes me excited again for the family God will give me, no matter what it  will look  like.

    Oh and speaking of babies, we thought Laelia was a little chunky because she lacked the muscles to “work off” the weight, right? Well we were wrong. Grandma just unearthed this picture of me at  Laelia’s age. :) Now we know whose genes to blame. :)

     

    Laelia loves bears

    Tuesday, August 12th, 2008

    Click on this picture for the video!

    My little darling is in love with every bear. :) It’s adorable! She also loves her duckie. We do have to help her cuddle them, but this child loves her stuffies! I have to remind Puppy to stop stealing them from her. *rolls eyes* It’s becoming a problem. I set  the baby  up with a stuffy and then go to the kitchen and by the time I get back Puppy has the stuffy in her  mouth across the room while baby is just staring at her totally bewildered. I wish I could catch it on video. (Puppy is our tabby cat by the way. :))

    We had a hard weekend, but we’re all doing better. This week we’re going to be doing some long term plans and budgets and talks about daycare and adoption and the future and stuff. All of that.  We also have to discuss when we want to do that test that will determine if I  can have more  kids.  Well I  can have more kids, but this will let us know  if I have good odds to have kids  who are healthy and physically whole. We have to figure out if we want it done earlier (so we know earlier and can make some long term plans now), or much later with her surgery which will be easier on her. The later is  what we’re leaning towards, but we had no idea how upset we would be at the prospect of not having more kids. So now I just want to know for sure so I can start working through that information. And of course we still have to meet with our geneticist on this issue as well. We already picked him out (he was the one who diagnosed our daughter). Also  at the end of this week we will  hopefully have Laelia’s new shoes. They are going to be pink! I can’t wait. No more sore little feet! Okay, that’s all the updating I have for now. Here’s  more  bear photos … just in case I haven’t crashed Phyllis’ computer yet. ;)

    Roll the die

    Thursday, August 7th, 2008

     

    She spins and she sways
    To whatever song plays
    Without a care in the world
    And I’m sitting here wearing
    The weight of the world on my shoulders
    (Lyrics from “Cinderella” by Steven Curtis Chapman)

    Yesterday (Wednesday) was our all-day at Children’s Hospital where, due to a scheduling glitch, we ended up being there a few minutes shy of..  forever! The receptionist told me when we were rescheduling this last week that I was the only parent to not get upset at her that day. So I guess after hearing that, I did my best not to make her life more miserable and ended up getting stuck in a miserable schedule. It was a hard day.

    Laelie is fine. She got her blood pressure taken while she was asleep (thanks guys :-/), but no poking, prodding, or testing this time. All that happened was that  she got a splint adjustment, saw her surgeon who moved her feet around (which didn’t  phase her)  and she got seen by some weird-looking (aka NOT mommy) people. Pretty uneventful for her really. It was just hard on me.

    I guess the only reason they wanted us back at the clinic (and also the reason we never received our test results from the EMG) was because the doctor wanted to give me  the results in person. She started out telling me about the guy who did the EMG  test and how good he was and what great hands we were in. I started to get a little worried at this point. Then she continued that it looked like Laelia had less muscle than we thought. She may also have some pretty severe nerve damage that we didn’t expect. And…

    Gosh this is still hard to talk about and it’s been over 24 hours. Let me try to start over.

    We ended up being the first ones in the building for her  first appointment of the day  and the last ones to leave the clinic. It was a long day. At one point I was put in a room where Laelie’s chart was left. It wasn’t in the door like it was suppose to be. So, being the snoopy person that I am, I riffled through it. :)  I never would have gone through a chart I know I’m not suppose to go through even though it’s *suppose* to be open for my viewing (after I sign a form of course). But I was not told my daughter was born with her hips out of her sockets or that her clubfoot situation was worse than normal or  a few other things in the past that  would have made me upset  but changed how I cared for my daughter, so I wanted to know what else I was not being told. Turns out they had a different word other than Amyoplasia in there under her diagnosis  so I grabbed a pen out of my purse and crossed out the word they had and wrote the right word down. (Right on the chart! Yes,  I am so bad. :)) Then I started to flip through the doctors notes, unceremoniously tossing paperclips as they got in my way.  It was weird now they talked about my baby girl. It was a list of big, bad mysterious things wrong with her followed by these snippets of “…and she’s an engaging, adorable girl.” Or something like that. Weird. Anyway,  so I moved right along to the EMG test tab of the chart. It was  discouraging.  I couldn’t read or understand any of the medical jargon but I kept reading, “ABNORMAL” and “SEVERE LACK OF” on all the test results. (That’s not good.)  Then I hear voices in the hall. “Where is the chart for the Wesley baby? (All the other kids have first names but clinic folk tend to revert to “Wesley baby” when they happen  upon Laelia’s first name.) It should be  on room seven’s door. Check the file, we don’t want to  lose it!”   Moments later a med student with curly brown hair  peeked in to “check on us” and, spotting the closed chart on the opposite side of the room (twiddles thumbs), snatched it up and fled. It wasn’t long before  Dr. S came in  with the same med student to talk to us. They both had purses in hand as we were the last patients of the day.  

    One thing I love about Dr. S is that she always calls Laelie “my LOVE! My adorable love!” It means that Dr. S cannot pronounce Laelia’s name, but  it  totally charms me every time. :) Anyway, we talked about Laelia’s very low blood pressure and how that’s related to muscles not working to stimulate blood flow. It also explains why her hands and feet turn purple when her splints and braces are on a little tight. That’s why it’s important we watch for that and CHANGE HER AWFUL SHOES!!! I mentioned that my aunt Linda and uncle Bud gave us some money to buy her new orthopedic shoes and that they should be ready in two weeks. The doctor looked satisfied with that. Then we discussed what we came for: Laelia’s EMG results.

    After Laelie’s EMG, they told us they would recommend a muscle biopsy to  Laelia’s neurologist. So when Dr. S  brought it up I was ready for it. But  since it’s a hard test (it’s painful and will leave a permanent scar),  they want  to schedule it  with her surgery on her feet so she will be unconscious. Since her surgery gets  put off every two months, there’s no date set, but we figure around her 18th month.  This test  *might*  give them a better idea of what  is wrong with the muscle/nerves in her body. Dr. S told me that there is a 2/3 chance that we may get a diagnosis from this test. She already has a diagnosis of arthrogryposis with amyoplasia, but this would be some other diagnosis to maybe explain what caused her AMC in the first place.  A 2/3 chance of finding something  leaves a 1/3 chance that we will be in the category of “something is wrong but we have no idea what.” If we can’t find out what is wrong then we can’t continue in the muscle clinic. We won’t know what caused this and we’ll have no answers.  But if we can find out (2/3 chance) then we will have a shiny, new diagnosis.

    Clear as mud? Good.

    If she is what the doctor suspects and falls into that 2/3 category, it means… that I.. will have a 25% chance of having another severely physically disabled child on my next pregnancy.

    “That’s 25% or 1 in 4. Do you understand what I’m telling you?” the doctor asked. I responded that I wouldn’t be having any more children with those odds and the doctor looked visibly relieved.

    I mean think about it.  If someone  gave you a four-sided die and said if you rolled a “2″ your next child won’t be able to move her arms or legs, would you  even roll?  Those percentages are too high! That’s a human life!

    That was really hard for me to hear. I had just been talking about having another baby and how weird it would be  to have a wiggly newborn. Plus it’s not fair. Charley and I make such adorable babies! :’-)

    I have been so upset about this. I even started  researching and signing up for more information  at adoption websites. I don’t know if this is an option for us, but for the first time in my life I can envision meeting my baby at the airport and welcoming him or her into my family. I have been looking for kids with AMC because, well, I know AMC pretty well by now and I would have none of the guilt feelings associated with giving my baby AMC, but just good feelings associated with caring for a baby with AMC. If that makes sense.

    I don’t make much sense lately. Because I think the more I fell in love with a new child, the more I would worry and be sad about what they wouldn’t be able to do… and the more ignorant people I would have to put up with. And if I think that I’m in paperwork hell now… well.

    I actually went to work today. I think it might have been a bad idea. Okay I’m also sick so it was definitely a bad idea. I just had customers waiting for phone calls so I went. At one point I was overwhelmed and I started tearing up at work and a coworker noticed and said, “There’s no crying in baseball!” Which for some reason made me feel better. :) I wised up and am taking tomorrow off to recover emotionally (and physically, kinda sick-ugh). Then  I can spend the day with Linda since Friday is her last day with us before moving to Bakersfield.

    I think Laelia will really miss Linda most of all. Laelia has a terrible time eating Cheerios and our OT said it might be because she has never handled them so Linda had this ingenious idea of putting  Cheerios in a bowl and letting her play with them.  So adorable!

    Speaking of amazing things my daughter can do, I just put Laelie down for a nap and when I turned on the monitor downstairs I heard the weirdest noises. I ran back up the stairs to see what was wrong, and saw my little love smacking the living daylights out of the monitor. Take THAT NAP! For a child with pretty dismal test results, she sure finds enough mobility to be ornery! :) I love it!

    And she wiggles and sways  to  whatever song plays as the lyrics above suggest. She especially loves Dr. Horrible. Which of course has caused me to play it constantly. If you haven’t seen it, it’s a 40 minute long  show about a super villain who is trying to get into the Evil League of Evil. One song is about a freezeray and  another is about how Dr. Horrible can’t bring himself to talk to a pretty girl at the laundry mat… no wait that’s the same song. :)  Pretty rockin’.

    So even though it looks bleak, there is still hope. Doctors don’t know everything.  Plus my hope is not tied up in test results. My hope is in God.  It’s in nothing less. And test results are WAY less. :)  

    Video firsts!

    Monday, August 4th, 2008

    While we were in the splint room waiting for the occupational therapist to adjust  Laelia’s elbow splint,  my adorable baby  leaned over and gave me a kiss right on the mouth with a smack and everything! It was so precious! Since then that’s all she does! Since some people (read: HER GRANDMA) have demanded more videos, here is one of her giving me kisses. Enjoy!

     

    Other cute videos demanded by her grandma include:

    The one of her getting her nose kissed.

    The one of her head butting her aunt Linda.

    The one of her giving big open-mouth kisses to her duckie.

    The one of her daddy kissing her tummy until she turns into a fit of giggles.

    The one of her keeping a drum beat with drum sticks.

    The one of her copying her daddy’s tongue noises.

    Whew. There. That should appease the grandma for at least a few more days. :)

    Trip to the zoo

    Monday, August 4th, 2008

    A few weeks ago, (sorry I didn’t get this up sooner)  Linda and baby and I went to the  zoo to see all the animals.  Baby ended up just staring at all the people instead of the animals.  And conversely, a lot of  people who came for the animals spent a suspicious amount of time staring at (and many talking to!)  Laelie. Anyone over 50 was puddy in her chubby hands. :) She loved her day. Here are some highlights.  

    We started off the day with a healthy breakfast. How Mommy got it on my head is the real question. One change of clothes later…

    We went around finding all the Laelie Bugs.

    Here’s a cute one.

    Then we saw the reptiles. Laelie was SO transfixed.

     

    Snakes are boring.  We fell asleep.

    Then we ended the day in the spinny chair.  Dizzy fun! (Shhhh, she thinks it’s part of the zoo. :))

    Also while we were there we took the stroller up this moving walkway that went up this huge hill. Linda was out front pushing the stroller while I was  behind her  holding Laelie. The moving walkway just got steeper and steeper to where I had to squat to keep my  balance. Then at the very top of the walkway the stroller got caught in the lip where the track rolls under us and Linda goes crashing into it! Now I’m walking backwards up a steep hill with my legs spread out all funny while holding Laelie in my arms to avoid her. All the while Linda is squealing. :) She finally got the stroller unstuck and we were able to get off that thing. It reminded me of my honeymoon. (Now now people. ;)) Charley hit the top of an escalator at the airport while pulling all our luggage behind him  and it all fell backwards on me. I went tumbling over it and we had a great time explaining to the airport security that we were on our honeymoon. It must run in the family. :)

    Bolt comes to visit

    Monday, August 4th, 2008

    Achievement Unlocked: The Right Click!

    After a bit of trepidation, Laelie warmed up to Bolt. She cuddled up to him for her lesson on how to right click. She had already mastered the space bar. By the way, did you know that if you press the space bar while reading/doing stuff online that whatever you’re doing will scroll down to the very bottom? Yeah it does that every time your baby presses that thing. Very annoying come to think of it. :)

    It’s been so wonderful to have guests in the apartment. And oh so good for Laelie. Someone is always watching her or playing with her or making noise around her so I don’t get burned out as much. Plus I’ve seen the energy level rise significantly around here. SO  NO ONE IS ALLOWED TO LEAVE! :)

    Bolt (whose actual name is David Ringer) and Linda both introduced us to Facebook on Saturday which ate up most of  our weekend. :) I spent so much time uploading pictures of my adorable kid that I had no time to blog. Or clean. Or cook. Or sleep. You get the idea.

    But the absolute best thing about having Bolt around is all the Spades I’m winning! Girls against guys is so fun. We are undefeated! And the cheating just gets less and less subtle on the guys end. (If this does not invite Charley to a retaliation blog I don’t know what will.) :)

    Fun fun. :)

    Robo Baby

    Monday, August 4th, 2008

     

    She’s more machine now than baby. :)

    So this amazing gadget has no mold because they don’t make elbow splints for babies. So Jill made it by  making paper towels cutouts and then cutting the moldable plastic around them and then making hinges from scratch, etc. etc.  It was very involved. Then you add tiny little hook pieces and forty rubber bands and you have a workable elbow splint! Ta da! :) We were given the prescription the last time we were at our orthopedic doctor’s office, but since the process is SO MIND-NUMBINGLY SLOW, our OT still has not received it so she decided to make what she *thought* he wanted. And, yes, that’s how the system works. :)

    So we went to see our temporary OT today since Jill is on vacation (which I will allow… I guess… if I have to :)). She is the same OT as at the muscle clinic so I’ll see her when we go to clinic this Wednesday too. She marvelled at the splint made “from scratch” and wanted to take a picture. Then she did some adjustments to it that we’ll try out for two days and then go back to readjust. It’s fun watching Laelie stretch out her arm to get something and then watch the splint spring the arm back up so she can reach for something else. Here’s a video:

     

    On the other hand (literally) we have our supination splint. This holds her arm so the thumb goes from pointing down to pointing more out to the side with her palm up. We were told to remember “begging for soup” because “soup”ination can’t happen until you can get your palm up by turning your arm out to hold the bowl of soup. So our supination splint allows that. And when she is using  any muscle you can watch her fight the splint.  Actually besides it being a little harsh on her (turning her hand purple), she is able to bat at toys without going around them to hook them. Now she can hit something directly. Apparently she is missing the muscles to turn  her arms so she is constantly in, hey Linda what’s the opposite of supination?

    Um, pronation.

    in pronation. (Don’t I sound smart. :))

     

    It’s actually triggered something in me emotionally (psychologically?) to see my daughter with her  arm turned the right way. It makes me really happy.  Speaking of feeling good, it’s weird that the closer we get her to looking like my idea of “normal” the better I feel. I was watching a video called  ASL Literature Series: Bird of  a Different Feather where a bird is born into a family of eagles. It shows how the eagle family reacts to this “aberration.” They put the bird in eagle school, they teach him to hunt and fly like them and they even do a surgery on his beak to make him look more like them. The more he represents the appearance of his eagle brothers, the happier his parents are. But he isn’t ever going to look like them. In fact, one day he meets other birds and learns to sing (which upsets his parents). They won’t accept the fact that their baby is different.

    I really don’t want to be like that. I want my baby to  enjoy a world I may never be fully apart of. I don’t want her tortured with multiple surgeries to make her look more like my version of  “normal.”  And while I want her to be fully functioning, I don’t want her to feel like she is anything short of beautiful and accepted.

    And that was the whole point of the story.