Archive for December, 2010

EEEEEEEEEEeeeeeeeeeeeeeeee!

Wednesday, December 29th, 2010

At 4:45 pm on Wednesday, December 29th, 2010,  for 30 solid seconds, Laelia stood up all by herself! That means she balanced on her casts by herself! The video shows all, just click on the picture below! (She did it one other time right after that, but not for as long.) She could already stand up by gripping something, but this is way cooler! :)  I had no idea she could do this! I can’t wait to show Dr. van Bosse in  nine days!

EEEEEEEEEEEEeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!

A Little Sad and a Lot of Happy

Wednesday, December 29th, 2010

Just want to start with a video that sums up my mood lately.

Yes, happy sad happy happy sad happy. Pretty much we can’t be sad long because happiness is brimming under the surface waiting to pounce! :)

As far as being sad…  Nothing major has happened. No battles or medical issues (lately). No natural disasters. Okay we did have a flood, but that happens every time it rains in San Diego. :)  And driving a VW Bug through a lake that used to be a road is not a good idea. :) But all in all we kept  Laelia’s casts dry and had fun listening to the rain.

The only sadness lately has come from thoughtless comments, both  anonymous  and in person.

Anonymous comments (usually through YouTube or occasionally through my blog) are easy enough to deal with. I just feel bad and then delete them. Done deal. But in person it’s harder. And since the holidays bring a lot more people out for shopping, and these people are generally stressed out, I’ve had to deal with some random comments from thoughtless strangers. We (Laelia and I)  heard so many negative things while going to Target for toothpaste one day that I came home in tears. Then add to that all the  recent  trips to the aquarium, the grocery store, the post office… well we heard a lot of comments.  Here are a  few of the  things people  have  said  in the last two weeks  and  my response to each.

Stranger: “What is wrong with her?”   My response: “What is wrong with that sentence?”

I’ve heard this question the most and it’s the most offensive. When making my response I try to do it  without sarcasm and while smiling. That  works way  better than my typical response of, “Nothing!! What’s wrong with your face?!” Okay just kidding. :) But asking what’s wrong with the sentence  does get  people to evaluate what they’re saying, or at least let them know that I’m holding them accountable.

Stranger: “When will she be able to run around again?” Me: “Well, casts come off on  January 7th!”

This comment is fine to ask, but just hard to answer. What I want to say is, “If God thought running around was so great, he would have made sure his favorite kid could do it!” :) A stranger’s question that involves a complicated answer (like going into your daughter’s  incurable condition)  is best avoided. I mean, doctors told me she’d never walk, but I’ve learned that maybe in a quick conversation with someone I’ll never see again,  it’s probably not the best time to bring that up. One nice lady we met at the aquarium asked Laelia, “Are you ready to run in two weeks?” And Laelia got all excited and yells, “Yeah!”    I  pulled Lali aside later  and explain how we hope she’s able to run very soon, in her own way.  And that might even be in a fast power chair! (Her response was the same: “Yeah!” Love my kid!)

Stranger: “What happened?!” Me: “Skiing or bungee jumping  accident. I don’t remember, I was  pretty high  at the time.” :-D

Nothing happened! This is a normal part of our life! I didn’t injure her! Once again this question is kind of a punch in the gut even when it’s not intended that way. I walked around Target the other day and so many people said this to me in a not-so-nice tone, or worse–asked  each other this question out loud so we could overhear  them as  they  walked past us. Or even worse!  They  said it amongst themselves followed by saying, “Poor little kid,” as they walked by,  but in a tone that carried all the judgement of the world, and directed  straight at  me.  Sometimes people assume that if your kid is in casts then you’ve hurt her. Some people are assumers (and I say that with all the force of a cuss word). Responding in a joking voice, “rock climbing” to that question always gets a more reasonable dialog going after that, and gives me a chance to explain, “There was no injury. She was born with her legs in one position so they recently fixed that surgically.”

Stranger: “May I ask what happened?” Happy me: “Of course!”

I don’t mind answering  questions! In fact we visited a church last Sunday and ended up spending a lot of time talking about arthrogryposis  and not once did someone say something offensive! It can be done! I don’t mind if people want to know about my kid (my favorite subject)–I don’t mind questions, I don’t mind other kids’ curiosity–that’s all fine. Just don’t say anything that could be interpreted, “Why is your child a mutant?” and we’ll be fine. :)

Oh and while I’m on this rant about being tactful, drivers need the same lesson. I can’t get Lali’s wheelchair down a curb; up is fine, but down is hard. I need the handicapped parking space near the little ramp. I have a placard for just that reason, but  during that same tearful Target trip mentioned above,  there was a guy parked  backwards in the  blue lined  space blocking the ramp. So after a while waiting in the rain with a shabby cover over those plaster casts we’re not suppose to get wet, I went into the store to ask the employee to  send out a page over the  loud speaker  asking  them to move. She responded, “But he’s just trying to make a return.”

The assumption being that my child just broke her leg (which was probably due to bad parenting) and now  the crazy mother (me)  feels  entitled about where  to park.

So how do I respond? Like a rock star that’s how! By choking back a sob and standing there wide-eyed. :)  Well,  I also repeated  my request in my serious voice followed by silently  pretending to take pictures of the illegally parked vehicle with my phone that can’t actually take pictures. Eventually  the guy moved. :) Yep.  That’s how the cool people do it. :)

But seriously I was completely vilified  in this situation. Not cool.  The “poor” guy just trying to make a return could have parked ten feet away in a legal spot. And it’s so dumb that stuff like this makes me  never want to  leave the house. Looks and stares and off hand comments would not bother me if they happened rarely, but it’s all the time now. The host guy at the Olive Garden open-mouth stared at her chair for so long I almost said, “Hey buddy! Eyes up here!” But I thought better of it. Bleh, there’s no help for it, people just stare. Especially  now that Laelia is bigger and expected to move around more.  I remember when  strangers would just say how cute she was. She got her first casts at three weeks of age and I could hide them under her swaddling blanket. Those were the days.

So those are my little unhappinesses. But if you haven’t yet read the below posts, I’ll just say that obviously we’ve been completely blessed and had a ton of joy this season too. Just look at that video at the top of this blog post again and tell me it doesn’t make you grin your head off. :) And we’ve been supported by so many friends that say so many positive things! In fact because of that alone our  happiness scales are completely unbalanced in a positive way.

So I will chose to be happy despite the looks and comments. Thanks for helping me do that!

Standing

Tuesday, December 28th, 2010

Did I mention Laelia can stand now? Because I just want to make sure everyone caught that from the billion pictures  from the last post. :) She can stand!!! It takes assistance, but that’s more than some people gave her any hope to do. I still remember those grieving sessions after hearing from doctors that she would never even use her legs. Seriously, thanks Beverly (Bonnie’s mom)  for telling me not to believe them! TAKE THAT Drs. E, S, P, W and M!!! You five were wrong. So there. Nanner nanner. :)

Here’s something our friend Tammi wrote about Laelia on her blog. Just click on the link below. Enjoy.

LINK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Holiday Fun

Tuesday, December 28th, 2010

 

Pure happiness!  Standing! The only thing I like about these bulky,  plaster casts is that they provide enough support for standing. So much in fact that standing is getting easier and easier.

Getting sleepy while standing.

Standing while watching Christopher Reeve explain to Big Bird how some people can’t move their arms or legs like other people.

Standing while making home-made Christmas gifts!

And while I love all the standing, our borrowed wheelchair has also been super cool. I’m so glad Shriners let us fly home with it despite our insurance not covering it. It has meant so much in the way of independence. Once again yay Shriners, boo insurance! :)

Throwing pennies into the wish fountain at Birch Aquarium.

Going through the wheelchair-friendly aquarium to try and find Nemo. :)

Getting a free push to the food table by Penny. :)

And speaking of Shriners. So glad this bill for  forty-three thousand dollars  is covered by them if our insurance decides to be their usual difficult selves.

So we’ve been blessed and have had a great holiday season. A highlight was getting to go to Grandma and Grandpa’s to  enjoy Christmas day.  Which is super cool considering  we actually met the  Fehrenbach’s (aka “Grandma and Grandpa”) after Laelia was born!  And while there I forgot to take very many pictures but I did get a couple cute ones with  Nana.

Talking to Nana.

Laughing with Nana.

We also went to Lauren and Ryan’s Christmas party a week earlier to hang out with more great friends!

Shooting Daddy with Adam.

“Eat it Daddy!” <–learning bad habits from Adam… again.

Goofing off with Chelsea.

And of course Christmas parties come with Christmas goodies! So I tried to get Laelia to eat healthy after all the decadence. I failed. :)

Eating fruits and vegetables! …..Oh no wait a minute. Doh!

Laelia also wasn’t feeling well last week so I took her to work with me to keep an eye on her.  Laelia was  on her best behavior and quiet the whole time. She even showed my coworkers all the adaptive sign language  she knew!

Sleeping under Mama’s desk while  Mama takes care of customers over the phone.

We came home from work  to discover the cat had destroyed our tree.

And someone was in our stocking!

“MAMA IT’S ELMO! COME LOOK IT’S ELMO! HE’S IN THE RED SOCK! OVER THERE!!!”

We forgot we stuck him in there so she discovered him on her own later in the day. :) Then she loved on him for quite some time. She loves her little stuffies. :)

Snuggling her stuffies. Her favorite color is red. :)

Great great memories! I hope you all had a great Christmas!

The Sweetest Gift

Tuesday, December 28th, 2010

Some moms, after they find out that their child has arthrogryposis, write about their experiences, or keep journals; some become advocates and others join support groups to share their experiences and to encourage others. Then there is that rare mom who takes her video camera and travels the country! :) Best gift to us all, Peg!

I’m so excited about this documentary! I can’t wait for it to come out! I know so many of these people!!! Theresa (who is shown painting with her mouth) did a short DVD of herself doing everyday things that she mailed to us after Laelia was diagnosed. It was so encouraging! Evan is the little boy in casts who had the same surgery Laelia just had. His mom (who is amazing) was a complete blessing to our family in just being open about her son’s recovery. Ward (with the Scarman hat) is how we got our Scarman doll. He taught Laelia that scars can be cool! Tracey (Ms. I’m Not Broken) has been a tremendous help to our family and provided the motivation and information needed to make the 3000 mile journey to Philadelphia for treatment. I could go on, but just watch!!!

Seattle Children’s Hospital Bills Go Bye-Bye!

Monday, December 20th, 2010

Tonight I’m baking cookies for people who ordered them previously  but wanted them closer to Christmas.

Then I’m retired!  

Thanks  to cookie sales, cookie  SALES and “cookie sales” we’ve totally and completely paid off all our Seattle Children’s Hospital bills!!

*cookie sales are when I sold cookies for the stated  price

*cookie SALES  are when people purposely overpaid for cookies

*and “cookie sales” are when people didn’t even pretend to want cookies and instead said something like, “Here’s $20, now go make two dozen cookies and then feed them to your skinny husband.”

Oh also I got $$ from an anonymous person inside a Christmas card with no return address. If I ever find out who that was I’ll come out of retirement just  to make  some thank you cookies. :)

Seattle Children’s Hospital was where Laelia and I attended an arthrogryposis clinic back on April 1st, nine months ago. We went to see the world-famous geneticist, Dr. Judith  Hall, who confirmed our diagnosis of amyoplasia,  which is a  type of arthrogryposis. She  pointed out very helpful facts about  amyoplasia including the fact that  the Mama doesn’t cause it, and it won’t happen in  future children. (Whew and whew.)   We also saw a PT who gave us the idea of using a wedge to train Laelia to sit up (which worked) and who encouraged us to do water therapy. We also saw an orthopedic doctor who was totally discouraging, but directly  led to us finding a better one in Philadelphia. I’m so thankful for this trip that our friend Kiersten (Laelia calls her  “Gigi”)  convinced us to do.  Plus it was so much fun seeing Kiersten and little Ryan and keeping them up all night. ;)  

The only minor issue was that there  is  no  statute of limitations on receiving hospital bills. And our insurance didn’t  consider an arthrogryposis  clinic  reasonable for a child with arthrogryposis.  So  nine months later we were still seeing a random $60, $85 or $250 bill in the mail from  doctors or therapists or x-rays  we don’t remember. (The joke is, “Oh yeah *that* doctor.  Isn’t he the one that held the elevator door for us? Totally worth $85!)

Now it’s over. I get so stressed out over debt so I’m glad this is taken care of. Thanks so much everyone! Merry Christmas! I reward you all with a cute video.

It’s a world of laughter, a world of tears. It’s a world of hopes and a world of fears. There’s so much that we share that it’s time we’re aware.  It’s a small world after all! It’s a small world after all. It’s a small world after all. It’s a small world after all. It’s a small, small world! There is just one moon and one golden sun. And a smile means friendship to everyone. Though the mountains are high and the oceans are wide. It’s a small world after all!

2010 Christmas Card

Thursday, December 16th, 2010

Any and all aspirations for mailing out real Christmas cards this year have been crushed by all these crazy (non-medical) complications since coming home from Laelia’s surgery. So here’s our official, online (sorry old people!) Christmas card. Enjoy!

Well, here we are at the end of 2010, scribbling down a last minute Christmas letter while waiting in line at the post office. LAELIA STOP RAMMING YOUR WHEELCHAIR INTO THAT!

Where was I? Oh yeah, the Christmas letter. So I found a lazy an easy format to follow to make this go faster more fun! It’s multiple choice time!

Dear:
1. Family
2. Friend(s)

(See how fun!)

Charles and I are still:

a. married.
b. speaking.
c. breathing.

For the most part, Charles is:

a. busily taking care of his girls.
b. still employed.
c. successfully dressing himself.

Alexis is:

a. baking cookies until she permanently smells like Grandma’s.
b. making fighting the system look sexy with her stress pimples and unwashed hair. ;)
c. appreciating prescription medication.

Laelia is:

a. recovering from her third major lower body surgery (fourth surgery to date).
b. starting pregnancy rumors about her Mama. [Just for the record, Mama does NOT have "a baby in her tummy." Let me just squash the toddler pregnancy rumors while I'm at it. It's all wishful thinking on the part of my kidlet.]
c. demanding ice cream pizza or she’s going to run away with Blue (from Blues Clues) and become a princess fish. [What’s a princess fish? “It makes persons green.” Duh Mom.]

Looking ahead to 2011, we wish you:

a. a happy holidays!
b. a happy New Year!
c. sanity!!!

All our love to you,
Alexis, Charles and Laelia

All of the above multiple choice answers are true, unless they sounded ridiculous… like Alexis baking. We’ve had a busy year with three flights out of state for medical treatment or evaluation: one to Seattle and two to Philadelphia. (Charley really should have done something about that rash earlier. ;)) And Laelia is three years old now and universally in charge of who’s cool.

Laelia: “Daddy and me are the COOL kids!”
Mama: “What about you and me?”
Laelia thinks about it: “We’re the same old kids.” :-/

Our year has been full of surprises, but I’ll just share a few from this month. Like:

SURPRISE there did in fact exist an amazing surgery (or more accurately an amazing surgeon) to give us hope that our daughter would one day stand. And even though she will have been in casts more Christmases than she’s been out of casts it’s worth it. Because yesterday she stood!

SURPRISE we won a raffle on Jared’s Hope and got an iPod Touch!!!

SURPRISE Laelia’s wheelchair has no copay!

SURPRISE Laelia and Mama got complimentary flights from Midwest/Frontier’s Miracle Miles program to go back to Philadelphia on January 7th for cast removal!

SURPRISE Christmas is next week and there’s no way to send everyone a real Christmas card. :)

We’ve had our share of super bad surprises too, but who can remember that long ago… yesterday, last week, this morning. Pffff. :)

So let me wrap up this Christmas card by saying, our year was an adventure. And even thought I hope and pray that next year is half the adventure this year was, I’m so thankful for our friends and family (and bosses and community) who stuck by us and provided everything we needed (from prayer to babysitting to encouragement to advocacy to time off from work) to get by.

Thank you!

Merry Christmas!

X-rays

Wednesday, December 15th, 2010

Five screws make for bone blues. But a straighter position is our gift from a wonderful physician!

What’s better than getting lost on my way to a radiology appointment at Children’s Hospital?

A. Doing it without my cell phone.
B. Doing it on an empty stomach.
C. Finding the darn place, getting Miss Casts and her wheelchair to the correct department, waiting an hour then being denied x-rays because they don’t have my daughter’s date of birth and diagnosis written on the silly prescription!
D. All of the above!

The answer is D.

Two days later and we got the x-ray! Barbara in radiology made a few calls to Philly on our behalf and worked it out to have them fax over the missing information.

Our x-ray tech guy was super awesome and helpful. He was cool with my daughter (who is terrified of x-rays for whatever reason) screaming at him the ENTIRE time. After it was all over and the sobs subsided Laelia spent the next half hour telling me, “It’s fine Mama. There there Mama. It’s just a big camera. You’re fine now Mama.” !!! She gave her daddy the impression that she was the brave soul who comforted poor Mama through the entire process.   :)

Then after all that they couldn’t give us the darn x-ray and we had to fill out lots of paperwork in the Health Information department. (A department that is hidden on the hospital’s massive grounds and involves a shuttle car, magic shaman and braving a hedge maze to find… not to exaggerate.)

Then I was called on Monday (earlier than expected) to pick up the records. (After, you know, finding my shuttle, magic shaman, etc.) Making it my third trip to the hospital in a matter of days!

Of course HIPAA made sure the CD those x-rays were on was nearly impossible to share with our doctor. So I ended up having to take a picture of the computer screen to get them. And because of these delays we had to cancel Laelia’s physical therapy appointment since we didn’t know if she could weight bear since we couldn’t get her x-rays to her doctor!

But I’d do it all over again just for the feeling I got when we finally saw the picture.

Before (pre-surgery from October):

After surgery:

!!!

Lauren made the x-rays modest for me by adding a black box (without me even having to ask, THANKS LAUREN!) so I can post them publicly. They are too exciting not to share! Pretty much what you’re seeing in the before picture are bad hip contractures (due to arthrogryposis) making Laelia look a little bent like she’s leaning over. In the after picture, the bones have been cut and moved down past the darn contractures. There are screws/clamps keeping them in place which will be surgically removed next year. But look at what a difference! Her legs finally go together!!!And they’re so much straighter!!!!!!!!

I feel so blessed! This life is hard, but it sure has it’s pay offs. Thank you dear Father God for my daughter and her new legs!

Power Chairs, Cookies and Miracles

Tuesday, December 7th, 2010

More great news!!!

We figured out today why National Seating made my daughter’s chair without giving us a quote first. It’s because they checked with our insurance (while we still have this insurance until December 31st) and they were given authorization to use our HMO! Our daughter has a plan that has both a PPO and HMO. The PPO part of her plan allows us to get Laelia’s durable medical equipment (aka her AFOs at $400-$600 a pop) that the HMO part of our plan doesn’t cover. (It depends what vendors we use and it depends on if those vendors are familiar with arthrogryposis… it’s complicated. For example SCOPE is never allowed to make my daughter a brace/shoe/AFO EVER again… no matter who covers it! Boo!)   But anyway when NS checked with our insurance they found out they are an approved vendor and our HMO will cover the chair!!!

Meaning, are you ready for this, NO COPAY!!!!!!!!!!!

So of course they decided to go ahead and make this thing that costs us nothing while they still have the authorization to do it! The only issue was that we had no place to put it, but even that’s been worked out! Golden State Tire Co in Escondido will hold it for us until we move! (Thanks Deb and Gary!!!)

So now cookie sales are going towards Laelia’s Seattle Children’s Hospital bills from April 1st. (There should really be a statute of limitations on hospital bills!) As well as other chair-related expenses such as a ramp, a car hitch, etc. So don’t worry, 100% will go directly to Laelia’s medical care/transportation needs.

We’re thrilled! Over the moon! It’s a Christmas miracle! And it feels like a weight that’s been lifted off our shoulders during this stressful time.

Because let’s be honest–I could sell a billion cookies and we weren’t going to cover that copay. But now we have a fighting chance to cover everything! I’ve already gotten seven orders for cookies! Thanks so much!

So does anyone want to rub my daughter’s head then buy a lottery ticket? Because good things are happening for this girlie lately! She’s back at school, she’s happy, she’s getting casts off on January 7th and now she’s getting a power wheelchair that everyone is telling me will change her life for the better! And if this run of blessings keeps up, I’m going to start thinking our life isn’t that hard anymore. And that will just blow all of my preconceived ideas about how terrible this all should be. Hehe. ;)

Chocolate Chip Cookies

Monday, December 6th, 2010

Yeah I can be domestic sometimes. ;)

Not to brag (okay, totally bragging) but I’m kinda  famous in local circles for my chocolate chip cookies. It doesn’t matter how many I make, I never return from an event with leftovers. After a few similar fund-raising events done by friends, I was inspired to sell my famous, yet simple  cookies to help  with Laelia’s wheelchair costs. I’m selling half a dozen  for $5. All proceeds go toward my daughter’s wheelchair copay specifically. This is my plot to turn sugar into a wheelchair. ;)

(If you’re not in San Diego and I need to mail your cookies  to you, just add another $5 to that total for shipping. Then email me at recordsky(at)gmail.com and I’ll give you my mailing address where you can  send the $$$. After I receive your letter, I’ll bake your cookies and mail them to you using the return address on your letter. Ta da! I’ve never done this before so we’ll see how this works.)

Laelia’s power wheelchair is  ready to be delivered, but there are several obstacles between us and bringing it home.

1. We live in an apartment with a billion flights of steps. We’re at the bottom of a hill and  have to  take several flights of stairs just to get to the front door. Then there’s a flight of stairs inside the apartment too. And since we can’t lift the power chair up even one stair, we need to move. And every time I have to carry my little girl awkwardly while dragging her wheelchair up and down the  stairs it becomes more apparent we need to move quickly! We’re in the process of moving, but it will take AT LEAST another two months to work out.

2. We have no way to transport her power chair. It won’t fit in  the car nor can we lift it into the  car even if it did fit. But Laelia’s grandpa (Chelsea’s dad) has a lift for us that he thinks he can hook up  to the back of my Nissan Sentra. We’re waiting until we have a place to take it to! :)

3. The copay for the chair will be  between $800-$1000. This was a rough estimate from the wheelchair manufacturer just to give me an idea on what to save up for.

4. They were suppose to give us a quote first and wait for our okay, but somehow the chair got made to Laelia’s specifications and is ready NOW. Getting it before the 2011 year in  four weeks will  mean it won’t be added to our  medical spending account. Also our  insurance is changing at the end of this month and  I don’t know if the copay gets better or worse.  Dumb stressful budgeting discussions with hubby  to follow.    :-/

Okay that said, I’m super  excited to see Laelia be a ton more  mobile and independent! She would love to keep up with me at the store or move herself on a walk instead of being passively pushed. I can’t wait to show her a whole new world! And even though this all seems hard and expensive and stressful, it’s for her. It’s always for her. And  I’m sure everything will work out. In the mean time, cookies anyone? :)