Archive for March, 2011

Our New Home

Saturday, March 26th, 2011

Standing in front of our  front door  a year and a half after starting this process.

Laelia’s new room. (Before the walls were cleaned and the carpet ripped out.)

Our new housemate. He’s as big as a pen!

The stair. Click on this picture to go see the video.

So we finally found our home! We move in  next week, but  are starting the major cleaning/fixing projects now. The above picture shows Laelia sitting on the only major stair in the whole place! And if you clicked on the picture and saw the video then you saw that she can easily mount it! Remember when  that was a LOT harder?  

What this means for Laelia is huge!  National Seating  can finally  deliver her power chair! And the kind of independence and joy this will bring her will be immeasurable! Laelia has been looking forward to this chair since we first got it months ago. The only obstacle was moving into a single story place since our apartment complex had a several too many stairs. We are planning on building a small ramp on the left side of the stair just for her wheelchair, but that doesn’t stop  us from bringing it home.

We  have been  completely blessed by wonderful friends and strangers alike  in the last two days. It became clear by the size of the mess that it would be VERY difficult to finish cleaning and tearing out carpet before we moved in next week. I mentioned this to Brenda, who had a group of  ladies over (she is my model for  hospitality),  and within 24 hours her husband, David the Hurricane of Service (as my husband refers to him), had a group of volunteers over ripping out carpet!  Laelia LOVED having people over and mentioned the  names of the  people she remembered (Mike and Brenda mostly) again and again. She also went around telling  the crew to be quiet. Ah the three-year old princess.

David works at Fellowship of San Diego, a church down the road from our apartment who has left us speechless more than once. They barely knew us before they were bringing meals and visitors after Laelia was born. We have some great friends from there who we adore!  Well it happened that a group of people from California Baptist University were in town for the weekend doing service projects through Fellowship. So Saturday morning around  ten college students in work clothes came to scrub walls and rip out carpet padding! They were here almost three hours and did  more work  in that time than Charley and I could have done in the next week! It was amazing!!!

The living room (and stair) after demo.

Laelia “helping.”

Laelia LOVED having the team over. She sang them songs and showed off her new standing ability. She also followed a couple girls, Ashley and Raquel,  around very closely just watching them work. (Once again like the little princess she is.) She drove around in her little pink caster cart that my dad had made for her (the wheelchair substitute for shorter distances) going  back and forth to all the rooms to see what was going on. I think she was super bummed that they weren’t all moving in with us. :)

Our hearts are so  full of thanks I can’t even describe it! And we appreciate those who have gone out of their way to help us. Thank you so so so much!

It goes without saying that  we saved not only time but also money because of the abundant generosity of these friends and strangers. We decided to give back a bit so we donated some of that saved money to a little boy with Laelia’s condition facing some bad circumstances in an orphanage in his home country.

Click on the link to donate to baby Joel!

We also donated some of the saved money to Reece’s Rainbow, a wonderful organization helping  people adopt  special needs kids  from countries where orphaned  special needs children  go to  mental institutions where life is awful. (And “awful” is too mild a word.)  Laelia, had she been born there,  would be a year away from facing the mental institution, despite her intelligence  and beauty. Baby Joel is around four months old and it takes around seven months to adopt from  his home country in the Ukraine. If adopted soon he would be around a year old and still very viable for serial casting, surgery and splinting, as well as English learning! I love his little face, it haunts me, and I hope he finds a family soon.  Donating to his  personal account helps a great deal in that it catches the eyes of potential parents.    Laelia has three friends with arthrogryposis  who have been adopted through Reece’s Rainbow. It’s a great program! (You all know you want a mini Laelia. ;) He’s so cute!)

And if any AMC families need to come to San Diego for Rady Children’s Hosptial or any of the many services available down here, we’d love to have you over! Please let us know! Right now we even have one working, yet gross  bathroom! (Oooooh tempting.) We love meeting new AMC families and Laelia loves it too! Or if you’re thinking of adopting a kid with arthrogryposis, come meet our Laelia!

Again, thanks to all who helped us and continue to help us. Thanks for the  borrowed tools and cleaning supplies and painters. Thanks for cleaning walls and ripping out the little boards with nails in them. Thanks for helping us remove all the doors. Thanks for the prayers and words of encouragement. We feel so loved!

Standing and Physical Therapy

Saturday, March 26th, 2011

Gearing up with knee immobilizers and vest!

Her PT through CCS’ Medical  Therapy Unit  is Alicia (on the right)  and the PT assistant, Megan (doing the case study on Laelia’s vest there), is on the left!

Jerry the Giraffe is sporting a little modified immobilizer too! Love it!

Standing! Click on the picture above for the video!

At home doing  standing exercises without the  knee immobilizers or vest.

Leaning this much on the table is cheating!!!

What in the world? How’d you do that?!!

I didn’t hear any complaining during standing so I looked over to see her like this! (She’s not allowed to watch cartoons unless she’s weight bearing. And she’s not weight bearing in the least in this picture.) Clever little cheater!

Love my kid! Her abilities get more amazing everyday!

 

 

Diaper Change

Thursday, March 24th, 2011

Another first! Today (Thursday, March 24th)  Laelia stood through a diaper change!!! For the first time ever! We were at CCS for physical therapy and I  had to change her, but there was no changing table. Thankfully there was a stool in the bathroom so I leaned her against that and said, “Strong legs!” which is my warning when  I’m going to stand her up. She fussed the whole time, but afterwards was so proud of herself and told everyone about it! She beamed with pride when she told her daddy that night.  Time for Pull Ups!

(This posted late on the 27th, sorry. I used my magic website powers and set the publish date back to the 24th so I’d have a record of when it happened. That’s right, people, I went BACK IN TIME!   :) Since  Thursday she has stood through most of her diaper changes!)

Clinic

Friday, March 18th, 2011

I love clinics. Not. (I’m being super mature today. Not.)

At least I know how they work now so it’s not so overwhelming.

I got the recorded reminder call two days before our appointment  with the following list of things to bring and do:

1. Your appointment is at 8:15. (We showed up at 8:40, and then didn’t have to wait around for  the appointment. Hehe.  :))

2. Bring all equipment  and braces to appointment. (I forgot.)

3. Bring your  insurance card (they didn’t ask for it), immunization record (didn’t have), and child’s social security number (couldn’t find).

4. Bring $ for parking. (It’s free on Fridays, duh.)

And here’s what they didn’t ask for:

1. $40 copay. (Apparently “clinic” doesn’t always mean “free.”)

2. Child. (Ha!)

3. List of questions  and child’s medical history. (Very necessary.)  

So I spoke with the doctor and we’re very glad our orthopedic guy (AFO-maker) suggested him.  This doctor  does NOT do surgeries, but instead looks at the whole body. He noticed that in every one of Laelia’s x-rays she was “backed up.”   We knew she was having trouble with constipation,  but we also knew this was normal for AMC kids, or kids with physical disabilities in general—something about not having the muscle strength to help with the digestive process or not being active enough. But I hadn’t given it much thought until she started bleeding every time she went #2. (To the teenage Laelia who is reading about her childhood. Yeah I put that on the Internet. And I showed it to your boyfriend. Love you!)

It turns out that  Laelia’s sacrum is not fully formed. X-rays clearly confirmed this. I remember doctors looking at her sacrum in the past, but there were always bigger issues at hand so it was never the main focus of attention. Now  it was the biggest issue we were looking at, and all the potty questions followed. I  felt bad for having a three-year old still in diapers  for one thing. (Although that is our next goal in  OT.) She goes #2 in the potty, but still goes #1 whenever, wherever.  The questions scared me a bit. I didn’t even laugh when my daughter removed her sock and threw it at the doctor’s back while he studied the x-rays. (Which was pretty funny.)

Fortunately there is an all-natural, tasteless  medicine that will help. The only problem is that  we have to give it to her daily, for the rest of her life. Don’t get me wrong, I’m grateful for the fix, but having to give my daughter something everyday will be a challenge. Antibiotics everyday for her infection was hard enough. I know there are moms in much worse situations than I am, with real medicines and worries, and I won’t dwell on it, but I’m bummed about this news.

Laelia and I both get a little nervous about clinics. It’s always emotional no matter  how routine. I always come home a little down and out. So when Laelia saw the fountain outside of Children’s Hospital with statues of children playing in it, well…

(*THE FOLLOWING STORY IS AN ADMISSION OF GUILT. DON’T TELL CHILDREN’S HOSPITAL!!!*)   :-D

So she really wanted to throw pennies in the fountain. “Pweeze Mama?”  And she was a bit scared and a bit weepy about going to clinic, meaning her little request was pathetic and heart-breaking. So I said she could. But when we approached the fountain (carrying the nine pennies I found in the bottom of my purse), we realized right away that this was NOT a coin fountain. But after a few seconds of internal debates,  we cheerfully threw pennies  anyway. Laelia’s wishes included chocolate pudding, a baby brother, a baby kangaroo, more sitting breaks  during PT (fat chance, kid!) and more pennies. (That’s my kid!) Then she  handed me a penny so I could make a wish. I wished for a nap. Laelia quickly informed me that she had made an earlier  wish that we would play and not nap when we got home. I must have missed it. Uh huh. Yeah. Wish voided. :)

So we walked out of there with a stack of prescriptions and they are going to try to add us to the muscle dystrophy clinic so the doctor can keep up with her. Arthrogryposis is neuro-muscular thing so they’re going to try to finagle us into that clinic. Unlike Seattle, San Diego doesn’t have an AMC clinic.

So that was our clinic day. It’s over now. Our brand of normal often gets interupted by these things, but now it’s back to real life. And if anyone from the hospital asks  if  we know how the  fountain got  clogged and flooded, we’ll just point out that we don’t have a baby kangaroo and demand our money back. :)

Here’s my new card!

Thursday, March 17th, 2011

Hi! My name is Laelia!     “LAY-Lee-Uh”

I have a lifelong condition called:

Arthrogryposis

It means my joints are stiff.

I also don’t have the muscles to walk or lift my arms high.

But I’m SMART so PLEASE include me in conversations!

So quite a few people have been asking about my cards. Since I updated them I thought I’d share the new ones. These cards can be made on your computer at home if you have the program for business cards, or you can go to www.vistaprint.com and get them for just the cost of shipping. It’s around $5 if you’re willing to wait for them a few weeks, and gets more expensive if you’re impatient.  

The card text has changed slightly. I took out the word “disability” and put “lifelong condition.” Arthrogryposis  IS technically  a disability, but people see the “D word” and assume all sorts of things. For one thing, my daughter is not mentally handicapped in any way, but when  I put  “disability” on the card  even the smartest people assume that! (Until the child  opens her mouth that is.)  And for another thing, Laelia can do things that people assume “disabled people” can’t do, like get around the apartment, blow her nose, feed herself, use the potty, get down the stairs, play video games, color and draw, etc.   She just does it differently.

I can’t  tell you how often these cards have come in  handy.    I’ve handed them out primarily  to flight attendents for our back and forth trips to Shriners Hospital for Children, but I’ve also given them to people sitting next to us on the plane, school teachers, new Sunday school volunteers, the babysitter at 24 hour fitness (back when I worked out), strangers who ask too many questions, friends’ friends, friends’ family, people who give me nasty looks when I use my handicapped parking placard and practically anyone who comes in contact with my daughter more than once.

It’s just nice to have a context when meeting someone new. I wish every mom had this card and then when you meet them in the grocery store or in a waiting room at Children’s you could just exchange cards. (“Whoa, he’s a biter! Thanks for the heads up!”)

Okay also I hand it to people who can’t pronounce Laelia’s name… and that includes most medical professionals. :)

And the thing is, people appreciate the card! And Laelia can now hand them out herself making it extra special!

So thanks, Ani, for the idea, and please everyone feel free to copy it!

Blogging Out the Blessings

Wednesday, March 9th, 2011

Laelia finally gets to meet Mickey! Her summary, “He doesn’t talk much.”

We went to Disneyland last weekend with Laelia’s grandparents on Charley’s side. See, I do let her have a little fun between physical therapy and her exercises! Sometimes I even let her play video games.

Laelia really  doesn’t get  Dr. Mario.   :-D

Mama:  “No, honey, the blue pieces go on the blue guys! No the blue ones! Just wait for a blue one.” Laelia: “I made the pill go BONK!”   I think we were playing two different games. :)

Laelia is really good at technology! Are kids nowadays just born knowing this stuff? I couldn’t get my VCR to work half the time when I was a kid, and it only had six buttons! The other day I went upstairs for a minute and when I came back down Laelia had gotten the iPod Touch (the one we won in the raffle) off the coffee table, turned it on, slid the slide bar to unlock it, scrolled over two screens, clicked on the Angry Birds game, selected the last level of the first chapter and then beat it! She was happily watching the credits when I walked downstairs. What?!!! She’s three!

Anyways, where was I? Oh yes, lots of good things have happened to our family lately! (I knew I started to blog for a reason.) I had meant to write something earlier, but life has been crazy lately! I’ll just start off with the good news: We’re moving!!! We’re finally moving!  Our new place  will be  four minutes up the freeway  from where we are now. And we can finally  take Laelia’s wheelchair out of storage and bring it home! I’m so super excited I don’t even know what to say! My dad and Christina (aka Grandma and Grandpa) are moving in with us for a couple weeks to repair the place and maybe  add a ramp since there’s one stair that goes from the kitchen to the living room. Also the roof needs work, the pluming needs a lot of work including  the major water  damage it caused, the carpets are covered in dog urine and there are spiders everywhere. But besides the cracks and flaws, it’s home sweet home and we’re over the moon! (But this is the last time I’ll ever move into a fixer. It’s a  lot of work!) We hope to move in sometime in  the beginning of April and have it mostly fixed by the end of April.

CCS finally started up! We had our first appointment almost two months  after we started the paperwork!  We now  drive over there  twice a week, Mondays and Fridays, for PT. An OT eval  through CCS is also scheduled for March 16th, and who knows when that will start up.  I can’t believe how long this process is!  Laelia is no longer even  “post op” since her surgery was four months ago! And now she needs to catch up  on all this PT and OT that post op kids should get right after surgery! Ugh.  Bad system. Bad!  Of course the therapists don’t have any control over the process  or timing and then they get kids that needed them months ago–it’s just hard on everyone. But so far it’s going well and Laelia is working hard.

Also Laelia has been seeing a chiropractor to wake up some proprioceptors twice a week, but we just had her last appointment. At least for the time being.  We were making gains, but it’s costly and we’re going to see how she does without it for a while. But I have to say  Laelia’s lower lumbar has shown  improvement and I continue to do the  two exercises I learned from the chiropractor  on Laelia everyday.

Can you spot the feet in this picture? :)

I’ve been praying a lot about Laelia’s poor little feet lately. I won’t go into the AFO drama, but she’s had sores and infections and pain and redness and… issues.   And we have tried everything. (So exasperated.) The doctors recommended recasting her until new AFOs can be made. At the word “casting,”  a little girl begins to cry… and sometimes Laelia cries too.  Mama hates casts! And I’d hate to go back into them and  wreck our new PT schedule. *cry*  I’m hoping maybe we  can just cast the left one since the right foot seems to respond to my torture sessions better.  (I am still stretching  both of her feet three times a day.)  We go in to see a new orthopedic doctor on March 18th to see what he thinks, and see if he’ll cast her.

(UPDATE: I just got back from Johnson Orthopedic this afternoon. They added some temporary  padding to  Laelia’s AFOs,  and they made molds for new ones! They think they could be ready in two to three weeks! If so, it’s almost not worth it to cast her up, especially if we have to wait until March 18th to even start the process. So I’m thinking that we may not have to cast her, but I don’t know for sure. I’m keeping my fingers crossed and hoping the shoes  are made  quickly!)

I know there’s more good things that have happened resently, but I’m having trouble thinking of  them in the few minutes I have to blog. Oh, well, here’s one: I love  Laelia’s doctor! Can I just  say that? Love him! I know people think that I’m crazy to travel 3,000 miles to see him, and I especially feel the distance when we deal with these AFO issues, but I just love him! He emailed me the other day (as he often does  to check on Laelia)  just because he and his wife were watching Laelia’s You Tube videos at home and he  can’t wait to see her walking! He definitely missed that class in medical school where doctors learn to be uncaring, hope-sucking egomaniacs. Plenty of our other doctors took good notes in that class, believe me.

Well I took my blog break and now it’s time for Laelia’s push ups. There’s a video of a dog on You Tube doing push ups that we watch while Laelia, who  also pretends to be a doggie, does her push ups.  I also  found a video on You Tube of a Sea World  walrus doing sit ups, so we’ll do those next  along with him. Then she’ll be a butterfly to work out her arms and legs, then a giraffe who has to  reach her long neck (standing up) to eat “leaves” (potatoe chips) off the tall tree (my hand). Then she’ll be  an elephant in a circus and have to lift up her leg while balancing on her other three legs, then she’ll be  a kitten learning to crawl, then she’s an earth worm for her back exercises, and then,  hopefully,  she’ll be a little girl again just in time for daddy to come home. Wish us luck!