Archive for the 'uncategorized' Category

Bus service update

Monday, September 26th, 2011

Charles here, the husband you read so much about on this blog. I just talked to Alexis about her experiences with  Willie today. Apparently, the reason he gave for possibly continuing to deny our daughter bus service is that the bus driver would have to be trained to assemble and disassemble Laelia’s KidWalk, and not just that bus driver but any other driver who might ever drive that route. Which is odd to me, because there’s no reason the bus driver should ever have to assemble or disassemble the KidWalk.

Assuming the bus service is going to transport the KidWalk in pieces, which is what was discussed today, here’s what happens every day: the bus shows up to our house. Laelia’s in a carseat and the KidWalk is in pieces. The bus transports Laelia, the carseat, and the KidWalk pieces to school, where an aide meets her, assembles the KidWalk, and loads her into it. Alexis explained this to Willie, who replied, “But what if the aide isn’t there?”

Well, bus folks, I hope you’re not suggesting that you need to learn to assemble a KidWalk so you can turn my 3-year-old daughter loose in a school parking lot, even if she is almost 4. If no school officials meet Laelia at the bus, you have bigger problems to worry about.

So frustrating. But with any luck we’ll get a favorable ruling from the bus people and won’t have to pursue this any further.

“Pees”

Sunday, September 13th, 2009

I forgot to post about Laelia’s newest accomplishment! She can now say, “please!” Although is sounds more like “peeees.” :) Here’s a video of her meeting baby Penelope, and  you can hear a faint “pees” when she wanted to  see the baby.

It’s so great! Now any tantrum can  be stopped cold. All I have to do is respond, “Laelia, what do you say?” And she thinks about it and then,  all teary-eyed, says  “pees.” And then the babygirl gets whatever the babygirl wants! It’s that adorable! :) Sometimes when we’re suppose to be learning how to say  new words (like “book” or “spin”) she’ll give up and try a cute, hesitant “pees” on me to see what happens. She’s quick, that one.

One day  last week when I was home from work  we sat down with crackers and worked on learning “please.” She screamed  “cak-er” half the day, but by the time Charley got home from work,  she performed her “please” perfectly.

Needless to say she’s had a LOT of crackers in the  past week. :)

CrazyBusyFunFunFun!

Wednesday, July 1st, 2009

Dusting off the ol’ blog-a-roo. Pffffffffff.

Besides life being crazy busy, it’s also been my lack-of-camera that’s been keeping me from blogging. Okay I’m not even really without a camera, I’ve had a loaner camera for a while (I’ll post pictures soon), but it’s not *my* camera. So that’s just sad. I probably have an unhealthy attachment to things. I dunno. I only named it Mr. Flashy McCamera and built a little  memorial for it, but that’s normal right? :) Thankfully my Grandma Wynema and a wonderful anonymous donor are helping us get another camera and new memory card. I can’t wait!

For those of you who have asked, no, the camera was not the only thing stolen. Not even the only nice thing, but certainly the most expensive. Ugh. We let our sitter go, and things don’t go missing anymore, but that could be a coincidence. I hate to think about it.

Melissa is watching Lali for us in the mean time. She will be our third (THIRD!) very pregnant babysitter. She is nine months along and I made her baby promise not to come before Megan can take over on July 7th. :) Megan was our sitter before, back when she herself was very pregnant. She’ll be coming over with her baby boy, Josh, in the afternoons. We were talking about physical thearpy and Megan said something like, “Wow, I forget she moves now!” Back when Megan first started helping out, Lali would just lie there (often with all four limbs in casts) not moving AT ALL. So the changes are very exciting! :)

 
Our big news recently has been that Laelia will be starting school in September! She is officially delayed in speech and gross motor skills, so she needs to go to a special school. The school bus will even be coming by to pick her and her car seat up and everything! We are going to check out the school on July 6th, and I’ll try my best be be excited.

I have a few of the “my baby is going to school” worries, but I feel they are justified since she’s just a baby! I mean, parents cry when their five-year-olds go off to school because they are “just babies,” but Lali is literally just a baby! And with the delays she seems even younger. I mean she doesn’t walk or crawl or talk, and she’s still little. So little. *sniff*

But besides those minor worries (including the worry that she is not only physically behind, but maybe also mentally), this school does sound like a blessing. They will help her with her speech and social skills. They will also try to do things that we (parents and doctors alike) feel are beyond her physical abilities, like potty training and sign language, but only to gently introduce her to those activities. Their website is: http://alcott.weebly.com/.  It’s only a few hours a day so I won’t be able to miss her for long. Still… putting my baby on a school bus at this age… okay not going to think about it.

In other news, it looks like Lali will finally be getting her new AFOs soon! They called me at work and told me they were putting in the order today! Our orthopedic guy is doing thousands of dollars worth of work and only charging us a few hundred! I love that wonderful man! The new ones will be yellow and will replace her cute pink ones. No more toes hanging out!

I don’t know if I’ve mentioned, but life has been crazy lately. Literally everything is changing from big life decisions to my hair and weight. One thing I am constantly researching and thinking about is a place to live. We are looking at cheap apartments so we can start saving up for a home. So far we’ve seen a few places and they’ve either been awful, dangerous or scams. And let me just tell you that nothing has wheelchair access. Boo!

We started the long process of saving for a down payment. I have been having weird dreams about this, mostly involving a lottery win. :) Thankfully, Charley’s job has been spared (three times now) and we are very fortunate that we can start thinking long-term again. I just wish it wasn’t going to take sooooo long to put my baby in an arthorgryposis-friendly home! It’s been on my heart a lot lately. Even after we save up the down payment (which we hope to do before she starts school… well, *real* school… when she’s five… you know, years from now) we can maybe afford something 40-60 minutes from my work. That won’t be a fun commute, but worth it!

When life was getting it’s craziest, I started receiving cards and letters from people I had never met! It turned out I was the recipient of a “card shower” from the ladies of Liberty Baptist Church (a church I don’t even go to down in San Jose)! It was very appreciated and came at just the right time (when everything was falling apart around me). I have been meaning to thank them but have had no time! So THANK YOU! My husband will tell you how excited I got whenever he brought in the mail. :) Mail for me! Gimmiegimmiegimmie!

Okay I’m out of time and this is getting long, but I wanted to share a great Lali moment. She learned recently how to say “oww!” So now when I pat her bottom she’ll say, “Oww!” :) This is just hilarious since I’m barely tapping her and she has a diaper on so I’m not hurting her in the least, but she’ll just repeat “oww! oww! oww!” for every time I pat her. If I keep doing it and she’s in a particularly rotten mood, she’ll crumple to the floor (very slowly, from a sitting position) and swing her arm up to her forehead very dramatically and frown and groan in her torment. :) Then if I’m ignoring her she’ll stop whining (even stop frowning) and peek her eye out from under her arm and see if I’m still paying attention to her plight. Then if we make eye contact she will continue in her half-hearted woe-is-me whining all over again. It’s so freaking cute!!! :)

Pray for Laelie

Friday, October 17th, 2008

Charles here.

Poor Laelie has been in pain for a day now. She’s fine if she’s in one place, but anytime you have to move her to change a diaper, adjust her orthotic gear, etc., she screams out in immediate pain.

The pain seems to be localized in her right hip or knee–perhaps both. We don’t know what caused it, or even if anything did cause it. The x-rays came back fine, so it could be that something’s twisted, or she could have some kind of joint infection, or…..who knows. We’ll see her orthopedic doctor early next week if it doesn’t get better over the weekend.

So please pray for Laelie. And pray for me, since I’m taking care of her by myself at the moment. And pray for Alexis, who is still in Washington, DC, and is about climbing the walls right now that she can’t be back with her baby.

Thanks.

To the faith healer

Wednesday, September 17th, 2008

FROM: Charles
TO: The guy who performed an impromptu faith healing on my daughter a couple weeks ago

Listen: I know you mean well. You believe yourself to have a gift, a special connection with God, and you wanted to share your power with us. And hey, if Laelia had begun to miraculously grow muscle after you did your thing (she didn’t), I would have been the first person to humble myself and thank you profusely for praying over my daughter.

But I don’t have faith in you. Don’t get me wrong—I absolutely believe that God could miraculously heal my daughter. But I don’t have faith in you.

So why let you do your thing? It was more about humoring you. You seemed so happy when you ran into us at the party, and so happy that you could pray for her. At the time, the experience seemed pretty harmless, if a little uncomfortable, like when an older relative with Alzheimer’s says something nonsensical and you just have to play along. I will say this—you were genuine in your faith. At no point in time did you try to hustle us or get us to buy a watch.

But you know what? The more I think about it, the less harmless the whole experience feels. When someone wants to heal Laelia, unless he or she is very careful, a number of things will get communicated to her, regardless of intention. Things like:

  • Your life has been leading up to this moment—an encouter with ME!
  • You have been incomplete before now. Now that you’re healed, God can actually use you for something important.
  • I guess your parents don’t love you very much—otherwise they would have taken you to see me a long time ago.
  • If you don’t heal after this, it’s because you’re doing something wrong.

I suppose Laelia’s not getting these messages yet, seeing as how she’s not quite 1. But she’s only going to get older and smarter, and folks like you will still be out there. God has a wonderful plan for my daughter’s life. He may heal her in this life, and He may wait to heal her in the next. But don’t go telling Laelia what God’s plan is for her life when you clearly don’t know.

That’s why, the next time you ask to faith-heal my daughter, I’m just coldcocking you, no questions asked. Fair warning.