Archive for March, 2010

Laelia and Daddy

Thursday, March 25th, 2010

albumcover

piggyback

Laelia LOVES her daddy!

PS: I like the first picture because it looks like an album cover. :)

Upcoming events

Thursday, March 25th, 2010

Random cute pictures!

red

Laelia at Lauren’s

gait

Laelia at PT on the Gait Trainer

bubbles

Laelia at OT (Who says you need biceps to blow bubbles?!)

We have a some very exciting things coming soon. The first being the arthrogryposis clinic in Seattle!   Laelia and Mommy leave in five days! We’ll meet up with Kiersten and little Ryan and will be gone from March 30th to April 2nd. I’m excited to get to see Kiersten again. Besides one Disneyland vacation we’ve mostly just kept in contact via email. It keeps us sane since we experience very similar frustrations in this little world of arthrogryposis. Plus we’re both “lottery” winners, meaning we both won the 1 in 10,000 chance of having a kid with amyoplasia and the 1 in who-knows-how-rare chance of having that amyoplasia in all four limbs. Bleh.

I’m almost prepared for this trip. I made a book of Laelia’s pictures from birth to four months and labeled them. This will help Dr. Hall (and yes that’s a link to her own wikipedia page–she’s a celebrity in these circles) with her official diagnosis and prognosis for arthrogryposis. :) We’ve asked all our family about genetic history on both sides. I have a partial list of questions for the doctors and OT we’re seeing–including some questions on the next surgery Laelia has coming up and if there’s a way around it. Ah homework. It feels like being back in school. :)

I also got a copy of Laelia’s medical records (minus newborn records that I couldn’t get my hands on fast enough) for myself, and went through the mess of ‘em putting in notes and divisions. While reading through them I was absolutely amazed to see how far she’s come.   It brought back some painful memories truth be told.   I read again about all the tests that came back so negative: muscle wasting, weakness, lack of function, poor to no use of limbs, severe joint deformities etc.   Some of the doctor notes mentioned how hard it was for them to even do exams or tests because of Lali’s deformities.   So the fact that now people on the street give me dirty looks for using my handicapped parking placard because no one in the car looks obviously disabled is amazing!!!

Here’s two of the pictures in her folder.

Five hours old:

newborn

Five months old:

february

So I’ll be sure to update everyone on our trip when we get back.   If I learn even one new thing to help my daughter from these experts it will have been worth it.

The other exciting thing coming up is a meeting on April 5th to apply for school (Head Start) for Lali next year! We met with Early Head Start (where Lali is now) and Regional Center on Friday (the 19th).   We learned that the Regional Center will end service for her when she turns three because she has no mental disabilities. Yay! (They were the ones providing respite care for us before California budget cuts.)   And even though Lali was uncharacteristically bratty and threw a few minor fits, the meeting still went really well. We’re really excited about Head Start and are looking into going to a school in National City. They really want her to go to school where she can thrive! And Barbara from Head Start (the special ed coordinator) answered all our many questions.   Our next steps are to do the application (which is a long, involved process and requires traveling to the school), do an IEP in June or July and then we’ll see! I hope I hope I hope this works out! We were a bit emotional after this meeting. We’re SO SO SO thankful that Laelia’s charms get her places, and that her teachers love her.

Then there’s my birthday coming up. Laelia is probably taking me to the zoo for that one.   :) Then there’s jury duty… yeah I’m out of exciting things. :-D

The Great Escape!

Thursday, March 25th, 2010

escape6

A story of my little escapee.

“Who me?”

One thing Laelia is not allowed to do is go out on the patio unsupervised. There is a gap you can see in the picture above between the patio floor and wall that she could slip through and fall pretty far. But I forget how good she is now at scooting around.   If the glass door is open she can now scoot right over the bump and get to the patio.

escape2

So when she does get out there she’s really proud of herself. And would really appreciate it if Mommy and Daddy would notice and chance her. :)

escape1

And if we don’t notice right away, she pretends to do something bad. “Is gonna fall!” she exclaims with a grin.

escape7

Caught!

escape3

Close up of the “caught” face. :)

escape4

The reluctant “coming back since you asked nicely” face.

escape5

And the inevitable “pretending to fall back towards the gap to get a reaction from Mommy” face. :)

Laelia Videos Through the Years

Wednesday, March 10th, 2010

I wrote this last week for a mom who has a six-month old with the same condition as Laelia.   She was worried that because her child barely moved her arms, that this would mean a future of having to do everything for her daughter–brushing her teeth, helping her go potty, everything.   After writing this I decided to share an edited version (the Laelia section) of it with everyone.   So if your child has arthrogryposis or amyoplasia and you’re worried they’ll never do anything with their arms, then be encouraged!   These kids are rock stars!

~~~

My daughter was born with barely any arm muscle too. We did (and still do) daily stretches and weight bearing and activities to get her to move her arms, but it just didn’t seem to help her move. We found out later that she was born without biceps too.   And I was so worried when she was six months old that I’d be doing everything for her.   I mean, she barely EVER moved.   If we saw a flinch we got excited.   Well here I’ll show you; just copy and past the following links to see.

Laelia 3 months-6 months

http://www.youtube.com/watch?v=5qNMkk4iQ6c&NR=1 <– Laelia couldn’t move her arms either
http://www.youtube.com/watch?v=i50exmwoxCI <–first time she ever significantly lifted her right arm

http://www.youtube.com/watch?v=X-Xtw2EjcbE <–her left

http://www.youtube.com/watch?v=-wRlZmYWIdI <–first time she ever moved her right arm at all

http://www.youtube.com/watch?v=LFSJiR5oZs8 <–first time she ever moved her right shoulder to reach

http://www.youtube.com/watch?v=vRjE5EAvXHA <–her left

http://www.youtube.com/watch?v=ulXMBpGcmSQ <–reaching across her chest with her right arm

Okay these videos look downright depressing, right? Look familiar at all? And you can see just how little she moved. But these kids adapt.

1 year later
http://www.youtube.com/watch?v=rGAJPO6QMcA <–Lali lifts both arms her own way

http://www.youtube.com/watch?v=ZYNwHp2q … re=related <–first time she ever feeds herself

http://www.youtube.com/watch?v=KuMxDjz5 … re=related <–turning pages of her toy

http://www.youtube.com/watch?v=HqkzCTPxdA0&NR=1 <–yeah, my kid can play ball ;)

http://www.youtube.com/watch?v=OEHhlUTbSqA <–I invented this and now she can reach things at eye level

http://www.youtube.com/watch?v=Cn0zSvoTr_U <–this video doesn’t show that she got her own arm up on the table too

Laelia at 2 years old
http://www.youtube.com/watch?v=ykztWbAlpfw <–working a caster cart (the poor man’s wheelchair)

http://www.youtube.com/watch?v=C2iuECF2 … re=related <–driving a car!!!

Race for Literacy

Tuesday, March 9th, 2010

Or more like the Stroll-with-a-two-year-old-in-pouring-rain for Literacy. :)

walking-in-rain

She is singing, “Go Laelia! Laelia walking! Yay Laelia!”

The cup holders on her stroller are filled with water. :-/

It was five miles of non-stop rain after every weather report said it wouldn’t rain. We took turns holding an umbrella over Lali’s breakfast so she could eat something as we went. Had to stop several times for different Laelia-related things, and we started in the back of the race due to the stroller so let’s just say we didn’t win. :)   I did one diaper check, but thankful we didn’t have to change her in the downpour.

walk-for-literacy

They closed down Hwy 163 so we could walk on it.

Our shoes were completely soaked: squish squish squish.

For the first three miles Lali yelled, “Rain!! Laelia’s rain!” and was having a great time. :) Every time we passed a mile marker the event people would cheer Lali on like she was a rock star, and she ate it up! But around mile 4 she was just sick of being wet and cold. She started to say, “Laelia soggy bottom,” over and over–even on the bus ride home. :) It was awful cute. And her bottom was awful soggy from rain water.

We got home and rung out our clothes. I put them in the dryer and put the little girl in her bath until she warmed up. Then we got pajamas, ice cream from McDonald’s, blankets and cuddles galore. :)

As for the race, we finished 2020 of 2114. :) We were beat by a couple of blind people, a guy with bow legs, an 89 year old man and SEVERAL small children. But I only actually saw seven or so people behind us so I’m wondering if some of the people we “beat” were the people we saw abandoning the race because they were in short sleeves and shorts and soaked.

But we did it! Hooray! :)

YAWN

Friday, March 5th, 2010

yawn

Yawning

Pictures of the Girlie

Thursday, March 4th, 2010

sweet-lali

I have this picture on my desktop at work.

I love that Lauren takes pictures and posts them for me to see while at work! The school bus drops Lali off with Lauren and Ryan on Mondays and Thursdays to spend a couple hours there while Mommy finishes up her work day. When I do arrive, Lali loves to scoot from Lauren’s front door all the way to the driveway to get in the car. :)

lali-scooting

Other fun times with Lauren include:

lali-swing

Swings!

lali-glasses

Dress Up!

lali-pigtail

This is an old one, but look at that hair! She won’t let Mama near her hair! Ha! :)

I love you, Lauren!!! See you later today!