Archive for October, 2011

Halloween in the hospital!

Monday, October 31st, 2011

“I’m a bunny dressed up like a duck!”

“And my mom is Mama Bear!”

Mama Bear was the scariest thing I could think of, especially if you’re a medical professional. :) And since we were trick or treating in a hospital this year I figured I was pretty intimidating. :)

I have better pictures than this one but I love the shark grins on these two. :)

We ran into Colette before we left and she gave Laelia a present filled with goodies to help her not be so bored during her long Philly stay. But the best thing of all was the great candy from Canada.   I ate most of it. :)

Party at Shriners with cake!

It was so much fun for Laelia to go to each hospital floor and find the pictures of ghosts on the doors that indicated which ones were trick or treat doors. She would wheel in and yell, “Trick or Treat!” It was so cute. They loaded her up with candy. :) One of the perks of trick or treating in the hospital is that no one expects Laelia to be fully functioning. Also no one asks those questions that make us moms cringe: Can she grab the candy? Do her arms work? Why isn’t she walking? What happened to her? etc. Going to see a bunch of strangers for candy can lead to some interesting conversations, but the hospital staff were great! They even had her reach in to get her own candy and do it several times for practice! They were patient and talked with her and we had a great time! I kinda wish I could do Halloween this way every year and just isolate her from the world. But I’d be too afraid that would lead to becoming a hermit and maybe even homeschooling. ;) Hehe.

And her prince came!

The cute couple out for a walk. :)

We ended the day watching Charlotte’s Web like this. :)

Oh and she is doing better with her walker! She falls down a lot though. Check it out!

 

It’s all fun and games until someone gets surgery.

Sunday, October 30th, 2011

RMDH Play Area on the third floor.

Bed time story with Daddy long distance.

Watching rented movies all day long. Aka, chillaxin’.

The Walsh kids grew up on us! :)

Dessert!

“Unpacking.”

SNOW!

Our first snowman! He’s pathetic because we didn’t have gloves and he was COLD!

Children’s Museum

Friends Allison and Ian!

Baby Megan also has AMC!

TRAINS!

I spy with my little eye a bowling pin!

Crazy driver!

Falling asleep in my unpacked suitcase.

 

The Liberty Bell doesn’t ding!

Thursday, October 27th, 2011

City Hall!

I took Laelia to downtown today because I am crazy and like to get lost in cities whose roads make no sense and are rarely marked with road signs!

We actually saw guys putting   up a road sign. Great! Now do that TO EVERY ROAD!

I called my husband (who I had warned before hand that we were going exploring and when we’d probably be calling him saying we were lost) and he was in a meeting! He said he’d call back in ten minutes! Ten minutes! I almost ended up in New Jersey in those ten minutes!!! So I called Chelsea and she helped me find City Hall again down one-way roads and back alleys. She saved my life. Did I mention I get lost every time I drive in Philly? And that Philly sucks? Oh I have? Countless times? Okay well then. We did get to see Independence Hall and the Liberty Bell finally.

Laelia stopped to see the birdies.

The birdies were digging little holes in the ground.

Looking up.

“She’s saying hi.” (Um, Lali, that’s a boy.) “But she has a ponytail!”

“Guys I can’t see!”

Me: “Here’s the most important room in American history!” Laelia: “Okay.”

Aren’t we cute?

Here it is!

So Laelia charmed all the guards and park rangers by being so sweet and showing them all her card with a picture of the liberty bell and asking them if they knew what this was and then telling them she was going to see it! :) She talked about it non-stop. Then we finally see it and she says, “Okay…” (she’s all excited) “Go for it!”

Me: “Go for what?

Lali: “You ding it!”

Me: “Um, no we don’t.”

Lali: “You don’t ding it? Then what do you do with it?”

Me: “You look at it.”

Lali: “…..”

History is boring.

Rockin’ It in Philly

Thursday, October 27th, 2011

So I’m dumb. I thought my flight got in at 11:30, but really it was 8:30. I was reading the arrival time for coming home to California, not for Philly. It was still too late for the RMDH, but I was so surprised to get there early. Then I thought, “Oh right there’s a three hour time difference.” So many things wrong with that. Yeah I’m a real genius after a day of travel. So….

We got here fine. :) The flights were great despite the CONSTANT stream of chatter from Miss Lali. She refused to sleep and she promised me a nap that I never got. Because I’m not counting the 20 seconds of shut eye where the whole time Laelia told me how quiet she was being and then started in with the, “Mama I’m being quiet. Mama? MAMA! Can you hear me? I SAID I WAS BEING QUIET!!! MAAAAAAAMAAAAAAAAAA!!!” Then the lady in the next seat shook my arm to wake me up and said, “Your daughter wants you.” That woman does not have children apparently. Or a heart. :)

Laelia also refused to wear the ear buds in her ears because they didn’t feel good, but demanded to hear the cartoons. So we improvised. :)

We met with Doctor van Bosse and he looked her over. Once he found her. She was hiding when he walked in and it confused him for a second there. The look on his face was worth the fifteen minutes of my daughter asking me, “Is he here yet?” from under the table. :)

It looks like that one scene from the Wizard of Oz. ;)

Is he here yet?

Before the hiding fun we spent twenty solid minutes dancing together. Laelia knows how to step from side to side and spin while holding my hands. We would ask random medical professionals who passed by our door how to square dance but no one knew any steps. :)

Dr. van Bosse told us a bit about the surgery she’s having (called hip plate removal), he made noises over her KAFOs (which everyone calls “calf-ohs” here instead of Kay-Ae-Ef-Ohs like we do, although they assure me either way is fine) and he said to start thinking about her knee surgery either next spring or summer. We then casted Laelia’s legs to make a mold to upgrade her AFOs and make her some “walking” KAFOs too. The KAFOs she has now are for stretching.

The next day we got a phone call from the orthotist who said that he was surprised our doctor thought he could do three weeks worth of work in two weeks and we had two choices: to extend our trip or to fly back when they’re ready. Neither of those is a real option. We may have to go without.

The next surgery will be on her knees like I said and will involve tendon releases behind the knees and then inserting “eight” plates into the knees to help them grow straight over time. Sounds like she’ll be walking a lot more easily after it’s all said and done!

We also may get to borrow a walker from PT! We’ve NEVER used a walker before. We’ve used a gait trainer and a Kid Walk (which is really a gait trainer with wheels), but never just gone without a seat or help of some sort. Here are three of the five we tried out.

And here’s the first walker experience!


But Laelia liked this “walker” better. (Pssst: It’s a chair!) :)


Laelia did the parallel bars for Kim (the inspiration for the walker) and was a perfect angel through hip stretches. Stinker. (My secret weapon for hip stretches: sitting on her.) She’s taken a total of six steps on the parallel bars before today (and she was a big pill about those steps and demanded cookies for doing it, which I had to BAKE), but for Kim she was all walk walkity walk walk. Like I said, Stinker!


She also walked using the shopping cart in the RMDH Play Room. That’s not even weighted! I was so proud!

 


And she’s been nothing but spoiled ever since getting to the RMDH. They gave her a free toy from the toy bin. She chose a Sleeping Beauty Barbie. It says 4 and up on the side. She proudly said, “I’m four! I’m a big girl now and I have big toys!” This made me almost cry, “MY BABY IS ALL GROWN UP!!! Waaaaaaaaaaaaaaaaaaaaahhh!!!” Then she threw a big fit after she got it so I felt secure she still needed a mommy for many years to come. :)

Our first Barbie. See the joy. :)

She colored a giant coloring book for Miss Susan on the fourth floor at Shriners. Miss Susan even hung her art on the wall for all to see. We also have gotten lots of different OT-inspired toys like stickers and door hangers and coloring books!

We’ve only been here a few days, but already I’m ready to be done with Philadelphia. Laelia is being well distracted though and we have friends coming to visit so that’s good. I miss my husband. Laelia keeps asking for him. Only another week and a half! We can do this!

 

We’re off!

Sunday, October 23rd, 2011

I’m ready!

We fly out in half an hour!!! We’re ready! Looking forward to this two week trip  for the last week left me a zombie with  sporatic surges of panic.

(UggggggggggggggggggggggPANICPANICPANICuhhhhhhhhhhhhhhhhhhhhhhhhhhhPANICPANICPANICduuuuuuuuuuuuuuuuuuuhPANIC!!!)

One morning my husband found me just standing by the door with keys in my hand without moving. I knew that once I left home I would have to start preparing my final days at work and preparations for surgery so I just didn’t budge. :)

Oct 23rd: Today! We fly all day and arrive in Philadelphia at 11:30 p.m. We arrive too late to stay at the Ronald McDonald House.

Oct 24th: We move into the Ronald McDonald House and go to Shriners Hospital for Children at 1:50 p.m.

Oct 31st: Laelia is a bunny dressed  like a duck (yes I got that funny costume worked out last minute) for Halloween in the hospital. I’m going as… well let’s just say it was the scariest thing I could think of depending on who you are. I’ll post pictures when I get home in two weeks and  let’s see if you guessed right!  ;)

Oct 25th-Nov 1st: We have intense out-patient physical therapy everyday.

Nov 2nd: Pin removal surgery with the most talented Doctor van Bosse.

Nov 4th: Fly all day.

Nov 6th: Officially home.

Nov. 7th: School meeting and my first day of work.

Wish us luck!

Parental Readiness

Sunday, October 23rd, 2011

Pout face.

I went to a Parental Readiness workshop and legal clinic the Saturday before last to meet with a lawyer about our school issues. When I signed up to go we had just been kicked off the bus schedule for being special.  I learned a lot and have my work cut out for me.

I just have to say that our SEEC coordinator, Sue, and Laelia’s classroom aide, Rosie, are so wonderful. It takes good people to do what’s best for a child when it would be easier to ignore that child’s needs. I’m so lucky to have them both on Laelia’s team.

Right now  Laelia is not allowed back at school until after we have a meeting with Neighborhood House’s health  department since  the next time Laelia attends school she will have had surgery on her legs. They want  to assess  her and determine if it’s in everyone’s best interests  that  she  return to school. Our meeting is scheduled for November 7th (the Monday after we get back) with possible return to school as early as November 8th.  And even though I can understand the reasons behind the meeting,  it makes life hard. Emotionally I feel like she’s officially black-listed until we pass the tests, but thankfully I know more of the process and the people involved now. Last year was hard because it was clear to me that the director of the school didn’t want  my daughter back. (And I wasn’t wrong–that school is no longer servied  by SEEC and special needs kids are not welcome. Laelia was the last one there.)  In my perfect world  our meeting would  be  five minutes long, a couple of instructions and then school time. In other words it would be  part of the process of going back to school instead of a roadblock that we must overcome to be allowed back at school. Once again I find myself trying to put just the right spin on it for Laelia not to feel unwanted or hurt. It helps when the adults involved genuinely like my daughter. I’m so thankful for that.

When I met with the lawyer I learned that a legal battle  is the only  cure for schools not following IEPs. It seems like there should be some middle step between no consequences for non-compliance and a lawsuit. And there’s no way if they want to kick her out of school illegally for it to be resolved quickly or without cost. So I’m happy to play by their rules unless and until it conflicts with the law. But I initiated the communication with the school, and my hopes are high. I plan on getting to know everyone working for (yes FOR) my daughter, including supervisors of supervisors. And I plan on attending every school meeting not in conflict with a surgery or doctor’s appointment.

That is part of the reason why I left my job. My last day was Friday. I worked in CSR for DSP for five years. I will start a new position from home the next business day after we arrive home from surgery. Why did I plan this huge life change around a surgery? What was I thinking?

 

 

 

Happy Birthday, Laelia!

Monday, October 3rd, 2011

Happy Birthday, Laelia!

Cake made by Grandma Christina.

It didn’t last long. :)

Laelia Sky was born at 1:27pm on October 3rd, 2007. She weighed 7lbs and 2 ounces. Her length was indeterminable, and they were unable to get a foot print for her birth certificate.  She was diagnosed with arthrogryposis (amyoplasia) the next morning. I always  relive those first days on her birthday.

Home from the hospital after a short extended stay.

Three weeks old with new casts.

Laelia is two months old and all four of her limbs are in casts.

Three  months old and down to three casts.

First Christmas! This was right after her first tendon releases (minor surgeries). Down to two casts and two arm splints.

Laelia’s  first birthday!

Laelia turns two. (We did not plan that well. She got two major surgeries two weeks apart for her birthday.)

Third birthday. (Surgery got moved to the next month so we could celebrate.)

Now my little one is four! (This year’s birthday surgery is next month.)

 

Okay I need to stop crying for thirty seconds so I can get through this silly  birthday post. Why oh why did she have to turn four?! Part of me freaks out a little every time she gets a year older and still has not reached some gross motor goal. By her third birthday I was worried she wasn’t walking yet, and wondered if she ever would. (The walking party was so much fun!) Now at her fourth birthday I worry about potty training, bullies and  if she’ll walk better. But I know that  I just need to enjoy these moments with her now. I feel bad listing my fears and worries, especially when I should be celebrating, but it’s the honest truth. Birthdays are hard for me.

She’s growing up so quickly! Four years. Wow. Now I get it when people say they can’t believe how fast the time goes by. Other parents have  told me that time flies by when they’re little, but when Laelia was little time just  dragged by. I don’t know if that’s abnormal or not. But this last year, especially after she recovered from her osteotomies, time just  flew by! Maybe because we had so much fun! We’ve had so many milestones reached and awesome conversations together this last year! She has  mastered so much in the last six months alone! I  kinda wish  she could have stayed three forever.

Plus I’ll miss the look people have when  they discover that the little girl who just quoted all those verses or did a  math problem or had a whole intellectual conversation  while pretending to be a kitty  was only  three years old. :)

To celebrate Laelia’s fourth birthday my car decided to have a flat tire. After that was resolved we decided to  go to Home Depot to buy some soil and seeds so Laelia could watch them grow (like she’s growing) during this next year. The checkout lady gave her some free flowers because it was her birthday. It made her day!

We then ate lots of enchiladas and even more cake. I didn’t require Laelia wear her KAFOS for the  required six  hours of  stretching on her birthday. (No tears on your birthday!) So it was a pretty relaxed day. I think we needed it. We’re leaving for Philadelphia in 19 days and her pin-removal surgery is in 29 days.

Laelia has grown up so much.  She’s a young lady now–willful and spunky and strong. But when I look at her four-year old face while she’s arguing her way out of nap time, all I can see is this:

Happy birthday, my  baby girl.

Walking Party!

Sunday, October 2nd, 2011

 

August 4th, 2011 – We got a Kid Walk!

August 31st, 2011 – Laelia took her first steps with knee immobilizers!

September 22nd – We got full leg braces (KAFOs)!

October 1st, 2011 — Laelia had her  Walking Party!!!

Thanks so much  to everyone who came to the walking party!  We couldn’t have asked for a better group of people to celebrate with us.  And thanks to everyone else who couldn’t be there but sent encouragement  and/or duckies  in the mail! We love you. You all made Saturday the best day ever! And it was  so much fun!

I’m so thankful that  we can do something  nutty like send out an open party  invitation to the Internet, and instead of slapping us, our friends and family are there to make it happen. Chelsea did the food (see below) which included duck-shaped cookies and a duck cake! Christina helped clean and pulled all the  weeds out of  our front yard. Lauren decorated the balloons, Adam drew some giant feet for the wall, and my dad helped  by installing a ceiling fan so that the guests would not bake in  our non-insulated  oven living room.

Early Christmas present!

We had guests from Sacramento, Placerville, San Jose, Bakersfield, L.A. and Escondido, as well as many local friends and family!  And  five AMC’ers (besides Lali) showed up! And Laelia  loved it!  She’s talked of nothing else since!  She even  told me today  that she knew  the party was to celebrate her working hard at walking, and after her friends cheered for her it made her want to walk even more! Party win!

One of my favorite  memories  of the day was when Laelia walked across the finish line to get  her cake!  I had told her for the last three weeks that she would need to actually walk at her walking party. She didn’t really listen to me until I mentioned, “So you can get to the cake.”

But my favorite part of the day was the magical part when Laelia’s best friend, Ryan, walked! For the first time! Without assistance! In Laelia’s room! And more than one person later said, “Well, it is a walking party!” :)

So thanks everyone who helped us  celebrate our beautiful arthrogryposis princess  and  her five  quacks. ;)

 

 

See y’all for the  Running, Jumping and Rock Climbing Party! :)