Archive for September, 2010

Laelia’s 3rd Birthday Celebration!

Monday, September 27th, 2010

Birthday Girl!

Laelia wanted to be  a “Lalibug” for her birthday.

Let’s start over. The day started with a free balloon from Albertsons. Yes! Best day ever!

Followed by birthday cuddles. She was so excited about her birthday!

Then cake decorating. I take no credit for this cake. She went through Albertsons picking out her toppings. She was very opinionated and got everything she wanted.

This was hard to push out of the tube.

Ta da! Yes those are gummy bears and mini  Oreos! :)

The finished product before we cut it. She blew out her candle with the help of Grandpa Gary.

More cake please!

One of the little boys at the park threw our frisbee into our little group. It hit Laelia’s plate that Adam was holding for her and flipped the cake out of her plate, up in the air and back down into the frisbee!

Laelia begged for more cake after that.

This is a game we call “hit a ball with some plastic bowling pins while Josh checks the score on his phone and we all get a break from the kidlets.” :)

Laelia was surrounded by presents!

Some of the bags are bigger than she is.  She LOVES her presents! Thanks everyone so so so much!

We had a small group that met at the park to celebrate Laelia turning three next week. Lali didn’t get the concept of throwing a party a week early when it wasn’t her birthday, so she is convinced that last Sunday was October 3rd. :) We threw the party early since Adam and Chelsea will be in Germany on her actual birthday and she wanted them to celebrate with her. Besides being a very hot day, we had fun!

Laelia’s trip to Disneyland before her birthday

Monday, September 27th, 2010

Wave to Grandma and Grandpa!

It seems that 100% of our family pictures with all three of us are at Disneyland. :)

Baby cool riding her horsey.



Look Auntie Linda it’s Minnie Mouse!

Grandma and Grandpa found little Minnie on the ground after a group dropped it and then crossed the street and disappeared. So they gave it to Lali and she LOVES it.

Chelsea asked before we left, “Lali, what are you going to do at Disneyland?”

Lali:  “Yeah, I’m going to sleep in my stroller. I go to Disneyland to sleep in my stroller.”

A blue glowing light came in my drink. Lali could make it turn different colors.

She watched the World of Color show like this. Ha! :)

Chocolate cake for the (almost) birthday girl!!!

Laelia reads books with Joshua

Sunday, September 19th, 2010

Ups and Downs

Sunday, September 19th, 2010

So much has happened since  the last post that I find myself artificially paralyzed by the changes. I’m not a fan of change. I remember after that surprising shock of a double-lined pregnancy test when I had to comfort my husband (and myself) the only way I could:  by promising nothing would change. “We can still go to concerts–we can still have a life; we’ll make it work! Nothing major will change.”   That promise shattered into a million pieces the moment she was born, and a million more the next day when she was diagnosed. So I’m grasping for energy in the midst of these changes, but not like a drowning man  in water grasps for the surface, that sounds like way too much  exertion, more like when my really fat cat tries to catch a small bug. Right in front of him.  It’s the laziest thing you’ve ever seen, betraying a total lack of healthy energy or grace.

So funny story, IHSS (In Home Support Services) gave us a denial letter in the mail last week. I had to sign to receive it. The official letter was a joke of course. We had applied for this support  almost three years ago back when I didn’t know how I’d go back to work with all of Laelia’s special appointments. And I had to go back to work or we couldn’t pay our bills, but no childcare would take my daughter. (We had  little in  savings since  we had just  spent our entire savings on  a large, worthless emergency room bill. Long story short: I had chest pain and crappy  school insurance. So Grossmont Hospital became the recipient of the money my grandmother had left me.)  

After Lali was diagnosed I called  over fifty daycares to enroll my daughter, but they all refused. One daycare  center allowed us a tour before denying us, saying it was dangerous for  Lali to stay around other children when she couldn’t move her arms to protect herself from rough-housing. (False. She has done nothing but thrive around peers.) The last twenty or so calls were kindof an exercise in futility. I felt like I was racking up points in a video game. I would hang up with each one and laugh. I didn’t cry until I’d stopped at fifty, feeling I’d reached my quota. The YMCA stopped giving me  referral numbers at that point too. We couldn’t afford the better daycare who took special-needs kids, so we were stuck with smaller, cheaper ones who wouldn’t take  a liability… I mean disability… I mean perfect, wonderful child!  

So, where was I going with this? Oh yeah, so  I applied for IHSS at this point. Copied from  a website: “This program will help pay for services provided to you so that you can remain safely in your own home.” (I love how it makes the outside world feel scary.) Perfect!  Anyway, I called to make sure they got the paperwork and it was being processed. Three years later  they denied me in a letter.

Ha. Ha.

Also the other week I  got an impudent call from  MediCal (California’s Medicare).  The rep  started the phone call, in a rude tone, by demanding to come to my apartment. I had no idea who this guy was and couldn’t fathom someone this rude being a friend of mine who I’d invite over. I had to step away from my  desk (at work) and ask who this was and what it was regarding.  He angrily and impatiently said it was something I’d asked for. Once I realized it was MediCal I said I didn’t remember signing up for this. He rudely interrupted and  said, “YOU said you needed this ‘immediately’! I’m looking right at  the signature page. ALEXIS WESLEY JANURARY TWO THOUSAND EIGHT.”  

“Whoa, wait,  is this the  emergency help  I needed for my  three-month old?  Years ago?!  To help her to go to  PT  and OT  for her arthrogryposis diagnosis  because early intervention in these two areas is the only treatment for this incurable condition? And my baby NEEDED this immediately? And you ignored us… and it took weeks longer than necessary to  get it? And she lost all this range of motion since we weren’t trained on her stretches that she now gets twice a day? THAT  thing I needed immediately?  And you’re calling me two and a half years later (your definition of ‘immediately’?) and demanding to see my home? Screw you!” *Click*

That felt nothing but good. And I’m a good girl usually. :)

I’m so grateful for wonderful government programs like Laelia’s  Head Start school, and even her  IEP that helps meet her needs at school. The system redeems itself here.   We actually  accompanied our little girl to her first day of school last Thursday. She starts officially tomorrow, but Thursday we got to go into her classroom and do an orientation. Her teacher is WONDERFUL!   I truly felt this teacher wanted to work with us  for Laelia’s benefit, like we were all one big team. Go  Laelia!   What a special girl  Laelia is to warrant such care and attention!   This teacher has experience with kids with cerebral palsy so she at least knows that the smartest little  minds can  have limbs that don’t always  cooperate. Plus Laelia and CP kids have walkers, wheelchairs and other durable equipment in common. Her students from last year will also  know not to touch the shiny red walker even though it practically begs to be played with. :)

Laelia’s walker now lives at school.  It doesn’t fit in  my car’s trunk and is hard to transport so we decided to keep it there.  The walker has been hard. A while back when we asked Laelia to walk she moved a hesitant step forward by herself. It wasn’t enough to actually propel herself forward, but we cheered anyway! A couple weeks ago she managed to move forward without the therapist moving her left leg for her. Then for a second… a second and a half I think  (say, “one one thousand, two…” and that’s it) she did this bouncy, run thing in her walker! (Technically it’s a gait trainer since it has a seat and holds her body weight.)  It happened when we (her PT and I) had stopped paying a lot of attention to her and she saw a ball she wanted. So she kinda jolted her tummy and legs together and bam bam bam her little shoes made a noise I didn’t recognize on the smooth floor. I came home in tears! We had almost cancelled this appointment since I wasn’t feeling well. So glad we didn’t! Of course she hasn’t done anything remotely close to this since. :-/

Um… other changes… Well we just  got some paperwork in the mail from Shriners  for Laelia’s up-coming lower extremity  surgery. It’s becoming more real. Another surgery that will lead to another surgery. But they happen in Philadelphia now. Just our random life I guess. She goes in November 16th.

And when she goes into surgery, she will be flying free of charge! I  got an email  from Midwest Miracle Miles  who arranged complimentary flights to Philadelphia for the surgery! We were ecstatic! They even waived the baggage fees! Oh my gosh! Midwest recently combined with Frontier. So we couldn’t use Midwest Miracle Miles   on our last trip to Philly since Midwest didn’t have a hub in our area. But Frontier does! And mere months after the merge between airlines, we  are reaping the benefits! Our coordinator, Barbara, is wonderful and has answered my questions even  on weekends and  Labor Day! I wonder when she gets a vacation or break? We have our flights! So happy!

We also have a date to start paperwork for Laelia’s power chair. It’s in two weeks. It’s a long process so we’ll get it probably around Christmas time, but on the advice of doctors and therapists and other smart people, we need to start this now.

This means we’ve started looking for a new apartment (*groan*) that does not have eight flights of stairs outside and one  flight inside.  Since our  power chair  can’t be lifted by mortal man, we need  an apartment or house for rent that’s  one story and not on a hill (so no steps inside).  We’re having a hard time of this for many, various  reasons. All of which, when I think about them,  steal my life energy! (Nope, not overly dramatic here. :))  *Pawing at bug… hard.*

We said goodbye to our babysitter, Megan, on Wednesday.  She  came over four days a week during the summer  so  this is another huge change for all of us.  Laelia  just announced that she’s going to see Megan and Joshua  tomorrow  and I had to correct her and say, “Actually you’re going to school tomorrow!”

“Megan and Joshua and school!”

“Um, just school honey.”

“Oh with my boyfriend?!” (she includes little boy’s  full name)

*sigh* “Yes, school.”

I’ve made something like twenty-five batches of cookies in the last month. Gained five pounds.  I’m really good at this  now. Um, baking cookies not gaining weight. I can’t bake anything else, but I make the best chocolate chip cookie!  I now dye them funny colors for Lali.

I brought four batches of multi-colored cookies to Disneyland yesterday.  It was a Wesley family picnic outside of Downtown Disney with Linda and Phong and Grandpa and Grandma. Laelia loved it!  It  will be her last hurrah before school starts.

Okay I’m getting really tired now and will finish this post later. Laelia’s bag broke  and she’s  now taking my purse to her first day of school. This will be interesting. I’m putting her name on it and hoping that’s okay. Has anyone sent their kid to school with a purse instead of a bag or back pack before?  

In conclusion,  lots of changes.  Laelia is  also turning three. Soon. NOT ALLOWED! :)

Real Bed

Friday, September 3rd, 2010

First night in a big girl bed!

But she looks so little in it!

Lali is beaming at the camera while daddy tucks her in. :)

My little girl is sleeping in a real bed tonight with a pillow and sheets!  *sniff*   Her first real bed! And she is completely dwarfed by it!  :)

We had to take out the box spring to make it  low enough to the ground to be safe, but this  hilariously meant that every time Charley or I sat on the edge of  her bed we  created a  small sinkhole that Lali would  slowly be pulled into. :)

We also had to leave off her Dennis-Brown bar (that connects her AFOs) since I didn’t want her to attempt to scoot off the bed in the morning and get stuck.   In my head she sleeps all night tonight like a good girl, and then instead of yelling her usual, “I’m awake! Come get me!” in the morning, she instead decides it would be more fun to scoot off her bed and go to her bookshelf and let her parents sleep in!

But if at midnight I have to pull that child out of her closet then she’ll be  in so much  trouble!   :)

Laelia  is a big girl now. *sniff* And she needs a big girl bed. *sniff sniff* The crib would have lasted many more years (in fact I could probably  fit a teenager into that thing and don’t tempt me!), but I wanted her to feel a sense of independence and growing up. She hit some major accomplishments this last  year that has allowed us to even consider a big girl bed: successfully sliding off the couch, scooting around  on her bottom and  sitting up from a  lying down position all by herself.

And  it’s not like we had to go out and buy a bed; we had one already–Mama just had to  put  her in it!

*sob*  My baby!  *sob*  :)

Part of the reason I put it off for so long was  due to  my  loathing for  all things “growing up”: from normal things like potty-training or  (the pressure to start) walking  to emotionally-crazy things like  becoming one year closer to leaving Mommy. :)   The other part    of the problem was that I wanted to be there when she woke up for the first time in her new  bed.  With our staggered schedule, I leave for work before the sun rises, let alone the child,  while Charley is there for Lali in the mornings yet gets home really late.  So  the switch had to take place on a weekend.

*Side note:  Once school starts at the end of the month, we’ll have more time all together  as a family!

Tonight I asked her if she wanted to sleep in a real bed. She responded enthusiastically, but that was probably because she thought this new arrangement would somehow put off her bedtime–as any last minute,  evening plan does. But she went down without a fuss and grinned for the camera as I documented the moment.

Now if only I could use this gift of big girl bedtime accoutrements in exchange for bribing her into staying two years old forever… hmmm…