Archive for July, 2010

Laelia’s first surgery in Philly

Friday, July 30th, 2010

For those of you who don’t know, my daughter is scheduled to have bilateral proximal femoral reorientation osteotomies on November 11th, a little over a month after her third birthday. That is a huge, major, body-altering surgery on both femurs just below the hip. Aka hip surgery. Aka terrifying.

I’m having a hard time getting a hold of the nurse coordinator, except for the occasional email with promises of future phone calls that never happen. I’ve been waiting three weeks for a phone call. Now she’s telling me Monday. I know they’re busy so I try to be patient.

During this phone call I get to ask all my questions, but I’m at a loss of what to ask. Just try Googling that long-winded surgery name to understand my frustration! I need to know everything, and I need it super dumbed down for me! :)

But as soon as I do get to ask my questions, and subsequently get my answers, then begins the arduous tasks of faxing over paperwork, meeting with her local doctor to keep him in the loop, figuring out flights and planning extended time off work. There’s a California program that may cover some of my leave without pay for the second week in Philly that I have yet to research. Then I have to set up accommodations for the 9+ days we’re there and start saving towards it. I think Ronald McDonald House is going to be our home away from home. I just wish I could schedule staying at the one closest to the hospital ahead of time!

In the meantime, my baby is going to turn three-years old on October 3rd. This is very emotional for me. She’s getting to the age where she’s going to start remembering some of these surgeries. I’ve never before in my life worried so much about one little person! What will she think? How will she feel? Will the medical stuff ever end? How can we make her life normal? Will this surgery allow her to stand without her knees being fixed too?

It does help that the surgery ended up being in November. Originally we were going to try to have it in September, but that’s just around the corner! I need more time than that. The only bad thing with November is that it’s too close to Christmas. I believe (although I have to make sure this is still the case) that we have to stay in Philly about two weeks for the surgery, then fly home, then fly BACK to Philly six weeks later. That puts us in the Christmas flying season. And I still have no idea how we’re flying both trips, all three of us.

I’m doing this wonderful study of Ruth with some girlfriends. I have a workbook to answer questions as I read the history of Ruth. In the workbook it asked what legacy I’d like to leave. Even thinking of the future (legacy or none) stresses me out. I couldn’t even answer the question! But I don’t think anyone asked that of Ruth; it would have stressed her out too. And the answer at one point probably would have been, “Die in poverty as a widowed migrant worker.” I think it’s better to focus on the second/minute/hour that you’re in. Work a hard day’s work and stay focused on it. I can only do this journey if it happens day by day. Because I could look at my list of everything I have to accomplish before November and pass out! So one day at a time. One moment at a time. One weekend at a time. And God is ever present.

All Fours!

Saturday, July 24th, 2010

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Front view

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Side view

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I’m-tired-and-tumbling view

So super exciting news in Laelia land! She can now stay on all fours (feet and hands) for two minutes! She can’t yet get herself on all fours, but she can request the back-breaking chore of either parent. Then once in position, she  can keep it up all by herself! For almost two minutes!  We’re excited!

She can also get up on her hands and knees, although it’s a little harder. I keep having a dream that she goes from either of these positions into a crawl! I hope it’s not just a dream. She can kinda do an army crawl.  So hard for her to get a foot or knee to move forward (totally missing those muscles), so we’ll see. But still exciting! Eeeeeeeeeeeeeeeee!

Here’s a video! Click HERE!!!

 

Vegas and back again: A Mommy’s tale

Saturday, July 24th, 2010

I  was in Las Vegas at Deaf Nation this whole week. It was a long time to be away from Laelia–the longest time I’ve ever been away from her in fact. She learned the days of the week, kindof, as we went over and over what days I’d be gone and what would happen each day I was gone. And I promised I’d be back. And I warned that I would want lots of hugs and kisses and cuddles and would be very needy when I got back. She would solemnly respond, “Okay Mama.” When I finally got back home and woke her up from her nap, she was so adorable! She kept smiling really big even though she was half asleep!  She was the sweetest thing ever!  But at one point of many hugs and kisses and cuddles, she started to ask for a break! :) Now she’s been a little clingy. She demands that Mama put her to bed and Mama hold her and Mama brush her teeth and Mama feed her, etc etc etc. But I’m happy to do it! And Daddy is more than happy for the break! :)

I brought back a Super Deafy doll for her, and they have been inseparable ever  since. She even makes me put her hands in I Love You handshapes, even though the arthrogryposis doesn’t allow it. Every joint in all her fingers are stiff with contractures so it’s hard, but she still makes me do it. Breaks my heart that this child can’t lift her arms or move her fingers very much. Sometimes I think it might be better for her not to fall in love with a Deaf action hero. But just look at her face! How can I take him away?

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Click on the picture for the video.

Sidenote: Laelia calls every doll or baby  or random object “Penny.” In the words of my husband to Penny’s Mother, “So Laelia has started making voices for every inanimate object in the house, and she has decided they are all named Penny. This leads to some surreal conversation openers like (in high-pitched voice) ‘Hi! I Penny the butt paste!’ =]”  

She explained to a lady at the grocery store today that Super Deafy doesn’t hear himself and wears a bib on his back. The concept of deafness and capes are beyond her no matter how many Deaf people she’s met… um, in capes no less. :) We’ve been watching the Super Deafy  videos online,  and Laelia demands we see them over and over. I’ve had to interpret them for her, and she really gets into them! She doesn’t get that Super Deafy is being funny, but instead cheers him on. So cute! I did the same thing as a kid with the old Batman TV shows. ZAPPO WHAM BLAM! It was serious business for me. :)

Needless to say, Laelia has had a busy week with Daddy while I was out partying… I mean working. :)  Thankfully  they had Megan and Chelsea and Lauren and everyone at school to help. Plus Jill and Sylvia at OT and PT. Plus, you know,  a box. :)    

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Our weekend

Monday, July 12th, 2010

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Grandma, there’s no way your getting this out of my mouth.

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Cheese!

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Where’s Linda?

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Hehe!

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You people look hot. Not me! :)

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Look Daddy! A doggie!

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Quick hugs before bed!

Had a great time at Heath and Heather’s wedding! It was beautiful. Her dress was gorgeous! And Laelia loved to see all her family members! (And a few people not related to her who she thinks are family members. :)) And of course I zoinked all the pictures of Laelia from the wedding pictures and put them up above. :) Now we’re back from Idaho. Back to our routine. Well except for tomorrow Charley and Laelia are going to Disneyland to get some use out of these passes we bought.  Lucky bums.  I’ll be at work. :)

Got back from my doctor’s office today. Everyone was so amazed at how well behaved Laelia was (yay for naps!), and how smart she was. She had an invisible piglet on a leash that was running around everywhere! She kept asking the nurses if they wanted to pet the pig or hear it oink. So stinkin cute! I had to give piggy an invisible leash and chain at one point when it kept getting away. :) Laelia also asked to sit on the table and see the doctor. I had to explain that it was Mama’s doctor. This was a new concept–the fact that adults saw the doctor too. She didn’t believe me! She just kept waiting for the doctor to examine her. Ha! :)

It turns out I have costochondritis.  Pretty much it’s inflammation of the junctions where my ribs join with the cartilage that holds them to my sternum. I probably injured it while working out or even sleeping.  It explains the chest pain, it’s legitimate, it’s nothing major, has nothing to do with my heart or lungs, and does not require medication! Best of all it’s not stress-related! Yay! Good thing too, since we have more stress and surgeries and travel to look forward to. That pain in my chest was freaking me out, but now I know it will go away eventually. Whew.

I didn’t hear from Philly today about our surgery appointment. I emailed them, but the nurse who coordinates the surgeries was on vacation until today. She said she’d call me this week in an email. So we’ll know soon. Then I get to start the fun adventures of looking for flights, getting the time off work and arranging housing for the nine days we’ll be recovering in Philly. Ooh there was the pain in my chest again. Are they sure it’s not stress-related? :)

Also we decided to sign Laelia’s IEP (individual education plan). Our OT will measure her every joint, and then we’ll watch them like a hawk to see if we lose any range of motion during her time at school. If we lose even a little, we’ll fight this and have to hire legal help to change her IEP. But right now we’re in plan B. We’re looking for a volunteer to go to Laelia’s school for 15 minutes a day (would require getting a TB test first) to do her stretches. This would eliminate the need for it to be in her IEP. Her stretches take very little training. If anyone knows anyone interested let me know! Perfect for a lunch break!  (Nursing students, PT students and Child Development students *can* get extra credit for class, but have to check with their teachers first.)

Someone is demanding I read her books. Gotta go!

Victories in Videos

Friday, July 9th, 2010


Laelia’s version of her ABCs.


First time to ever touch a power wheelchair (in her defense). :)


A few minutes after the very first time she ever touched a power wheelchair.

Worry

Friday, July 9th, 2010

At your feet I lay her down.
Humbly before you I bow.
She’s the blessing, you’ve given to me.
Father of Light!

Beautiful by Plankeye

It’s 2:20 AM according to my computer clock, and I can’t sleep. My chest has ached for several days now, and I’m not being poetic. It’s stress-related, and bad enough to wake me up. Just knowing logically that something you  worry about is causing a physical pain is not enough to stop the pain. It’s a fascinating physiological reaction,  but one I dislike in the middle of the night. So I thought I’d write out my worries.

I was reading about osteoporosis the other day. Something Laelia will have. Something she takes vitamins for now. I read that it’s worse when you don’t use your legs very much for weight bearing. And then later when you do use them, if you can use them,  the bones can break from weakness caused by disuse.

I was hearing about arthritis. Lali’s geneticist said this was coming in her 20′s.

I finished reading Jodi Picoult’s book,  Handle With Care, a book about the life of a family living with a little girl with a disability (OI). I’m convinced this talented writer hates her readers. :) I identified with the mother so much for the first 60 pages; I even wondered if this was a true story. Then I watched helplessly as the mother destroys every life around her for the next 340 or so pages until, well I won’t give away the ending, but it sucked. For some reason it stressed me out and now I worry about what Laelia’s life will be like.

I worry about having another baby. We’ve decided to wait indefinitely. There’s just too much to worry about with Laelia, including picking her up since she’s largely immobile. A pregnant woman can’t lift so much weight or bend over quite so easily. So that’s out of the question. I mean there are other financial, emotional and even spiritual factors that may be greater, but either way I worry about Laelia growing up lonely. And after reading Handle With Care and one other  somewhat whiny book about the experiences of siblings of disabled kids, I worry about what kind of life we’d be bringing another child into.

Laelia asked for a baby today, which is the only reason I even bring it up. When we said our prayers she thanked God for “buildings and turtles and purple” and said, “please for to give baby… and Panzer!” (Panzer is the name of Grandpa’s dog, but also a name she gives every dog.) She wants what she wants. She seemed just as happy to get her plastic baby when she got home and rock it to sleep.

We had Laelia’s IEP meeting not too long ago. We asked how stretches could be included. Short story: they can’t–they don’t seem to be medical enough or educational enough. Stretching her fingers allows her to continue to grasp a pencil or paint brush, her wrist stretches  allow her to type, elbow stretches allow her to continue to reach her mouth to feed herself lunch, supination allows her to position her arms to catch a ball; these are  all things they do in school. Stretching is the ONLY real remedy for arthrogryposis. It’s the only thing that a non-medical person can do for her. It’s the only thing that makes me feel like I have any control over this condition.  Of course there’s  also surgeries, serial casting, and  splinting, but stretching creates the gains we’ve made, makes some  surgeries unnecessary and does what static splinting cannot. In my horrified thinking, to deny her stretches throughout the day, for eight hours of school a day (beginning when she turns three), is tantamount to neglect. I had a  nightmare where after neglecting her stretches for eight hours in the middle of the day, she became so stiff she  was  unable to hold a pencil in a month’s time. This would have been true of baby Laelia, but little girl Laelia moved around more and the results shouldn’t be as severe. I contacted an advocacy group. I was told by three different people to get a lawyer. I was told how to appeal, go through mediation and then go before a judge.  

The thing is, it’s hard for me to see another side to this. I can understand the school not wanting to do the stretches, I can even understand them viewing it as a liability, but I don’t think we’d lose if we took this to court. IEPs can end up in court; it happens. But I’m trying to find a compromise. And to that end,  add to  the the list of stressors finding a possible volunteer to drive to her school near National City to do 15 minutes worth of stretches five days a week if her IEP doesn’t work out the way it should.

Chest pain. It’s on my list of worries.

We went to OT and PT today. During PT we met with a wheelchair guy. His name was Chris, but I can’t tell you his official title because I can’t find his card at two in the morning. We tried a power wheelchair with Laelia for the first time earlier today. She did perfectly! She caught on faster than most, says Chris. He watched months of training go by in ten minutes as she learned to stop and turn and navigate. And she wasn’t scared. She finally could do what everyone else took for granted! Her joy was distracting enough for me at first, but now we need to get our insurance on board to get her one. Our insurance wants to drag their feet for at least three months. It’s going to be a battle.

I swear if Laelia did not have so much independence for the first time in her little life I would not even be thinking of a chair! Not because I don’t think she needs one or that it’s not wonderful, but hearing the logistics of owning one stressed me out. We don’t have a van, so we could consider buying a trailer and putting it behind my car. I don’t think I’d fit into regular spaces after that. The thing also weighs a ton (~200 lbs) and can’t be lifted. Great.

We also have to move. It’s because we are in apartment #8. Apartment #1 is at the top of the hill. Then you go down a flight of stairs to get to #2. Another flight of stairs for #3 and #4. Another flights of stairs to #5. Etc. Etc.  Our apartment  has  a long  living room and small kitchen downstairs, then up one narrow flight of stairs you have the rest. A ~200 lb power chair cannot be lifted easily. In fact you really need special equipment to lift it. It won’t work here. I knew this place wouldn’t work forever, but it would have been nice to wait a couple years until we could afford better.

Our wonderful next door neighbors moved out last weekend. To Colorado.

I called Shriner’s to make an appointment for Laelia’s surgery. The doctor’s nurse was on vacation and will be back Monday. We’ll probably come up with a date on Monday. Then I’ll finally know when this surgery will be. And I wonder if it will make things easier, or fill me with dread.

We’re flying to Idaho tomorrow and I’m not packed. I also work a full day tomorrow. Our flight takes off two hours after my shift ends.

The toilet clogged.

Laelia’s doctor died. It’s not new news. We saw a new doctor, one from his office, yesterday. Everything is new again. Dr. Schwartz was coordinating Laelia’s care. We also trusted him. Not that we can’t trust a new doctor, but it’s an added stress. Got this email from my husband before our appointment:  

-Update all specialists who need to know of the PCP change–Mubarak/Wallace’s office, OT/PT office……anyone else? Does anyone at the school need to know? How about Shriner’s?
-When you make an appointment, Aetna may have to call you and ask you questions about the change.
-When you make an appointment, make sure you let them know that you want Laelia’s medical records accessible to Edwards–it’s all in the same building, so maybe you don’t have to do this, but better safe than sorry.
-Accept that a good chunk of your appointment is going to be about bringing Dr. Edwards up to speed on all the therapy that Dr. Schwartz had authorized for Laelie.

Yay. :-/

We actually saw Dr. Chen (same office as Edwards and Schwartz) because we needed to be seen right away. Laelia has a chalazion (stye) that we needed medicine for. She also got a TB test and some paperwork filled out for school. We waited two hours to see the doctor. The best thing about seeing doctors in the same office is that you can always see a backup  when yours is busy or on vacation or sick. Worst thing about seeing these doctors is that they’re so darn popular  the wait time is extra long. Laelia and I used the time to give each other practice TB shots and explain exactly what happens. Laelia even picked the arm she wanted it in.  Afterwards we gave Pooh Bear a shot  and band aid too. :) But what I forgot was that you have to come back and get the sight looked at! Acc!  I told them we were flying out of town tomorrow! They’ll try to see us Friday morning. It’s just stressful!

Earthquakes. We experienced an earthquake before we left for the doctor’s office that shook us pretty hard. It was over quickly, but I never know when it’s going to be the “big one.” So since I was on the floor with Lali and felt it come a bit slowly at first, I quickly explained to her what was going to happen. Then when I heard the crack and the room started shaking harder I was able to say, “See, Laelia, an earthquake.” I was terrified, but Laelia was thrilled. When it was over she shouted, “Again!” :) This is the third earthquake that we have had since Easter Sunday. I’ve been having nightmares about earthquakes lately. In my dreams we’re upstairs in our bedrooms when it happens and unable to get to Laelia across the hall.    

I’m tired.

Okay so that’s my outpour of worry. The random things. It’s not all bad. In fact I had a good  talk with my OT this afernoon  about what to do about  Laelia’s IEP.  Jill (our OT)  is going to measure all of Laelia’s joints then watch them like a hawk next year. We’re trying to figure out ways around traditional stretching through that eight hour period too. Then we’ll incorporate stretching into our Mommy/Baby time (which I hate, but we’ll do what we need to do) and while waiting for the school bus for that ten minutes in the morning at the top of our hill (close to apartment #1). I felt a little better after talking to her.  

I also had a good time  doing   a Ruth study with girlfriends. We talked about “weeping forward” and how we see strong women push forward in life despite it all, but half blind with tears in their eyes and arms outstretched to keep from running into something. Hey, whatever works.

Okay. So tired. Bathroom then prayer then bed.

Toilet’s  clogged. Ugh.    

Laelia sings to her dolly

Friday, July 2nd, 2010

I didn’t even know she knew the words! Well *most* of the words. :)

She’s come a long way! This is her seven months ago.

Arthrogryposis Awareness

Thursday, July 1st, 2010

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So yesterday (June 30th) was the first national Arthrogryposis Awareness Day! To show support, people were asked to wear blue! I loved how my facebook newsfeed turned mostly blue in the course of one day. :) We want to say a big THANK YOU to all of our friends and family who either wore blue, forwarded the arthrogryposis awareness flyer or helped other people pronounce the condition in the first place! :)

Arth = like the beginning of the name “Arthur”

Ro = like row row row your boat

Gry = rhymes with “cry” unless you’re lazy (like me) then it’s like “gra”

Pos = like to “pose” for a picture

Is = like the word “is”

So everyone all together now, Arth Row Gry Pose Is!

Yay! Give yourself a hand! Or you can head bang if you can’t use your hands!

The day of awareness was chosen because June 30th was the day, several years ago, when the support group for arthrogryposis multiplex congenita (www.amcsupport.org) was founded by a mom who had a gorgeous little girl with, surprise, AMC!   Back then there was no major support group. So I count my lucky stars that by the time Laelia was born we would be blessed over and over again by the wisdom and encouragement of this group!

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Laelia is wearing blue for Arthrogryposis Awareness Day! (The party stuff was for Tom’s 60th birthday the same day! Note the Thomas the Train party decorations! :))

In the same vein of awareness, we did our first ever meeting for Laelia’s IEP (individual education plan) last Tuesday afternoon.   From everything I had read on how IEPs can be frustrating, terrifying or depressing I have to say we had a good experience. We went into our meeting trying to think of what Laelia would need in the form of special assistance at school. All we could really think of was that she’d need daily stretches, lots of assistance eating and some help getting places. But the experts knew better and started to throw out things I had not even considered. Changing her clothes for one thing or getting on the potty for another thing.

And the child is so darn willful! I have NO IDEA where she gets that from. (Tongue in cheek. :)) But they all recognized that fact, and how that affects her willingness to use adaptive equipment, and were willing to work with Laelia just how she is, willfulness and all! :)

The biggest concern I had going into the IEP was that my daughter would be reduced to “the disability” or “the problem student.” But that wasn’t the case at all. Yes, she’s disabled and, yes, I had to face that when going over the ins and outs of how her day would be different than the typical student, but it wasn’t thrown in my face. I really am getting excited about the possibility of her going to Head Start next year and just imagining what she’ll learn and do.

We didn’t sign the IEP since it’s not finished. We’re still trying to figure out how to get her daily stretches for all those pesky joint contractures done at school. I’ll probably be training a volunteer or aide for that. But I’m very positive that she’ll thrive. And that’s so important to me.

And a big thanks to Renee (her teacher) who played with her and distracted her while the adults talked shop. :)

Dr. Schwartz

Thursday, July 1st, 2010

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We learned today that our dear pediatrician, Dr. Allen Schwartz, passed away. I’d say “rest in peace” but he was Jewish and has told me stories of the partying and feasting that goes on with any special occasion. So I have to bet this will be no exception.

He was a wonderful doctor who we met before Laelia was born in a birthing/new parenting class. He was hilarious, and left us wanting him for our doctor. After Laelia was born I remember trying to explain to him that she had arthrogryposis. But unlike a typical doctor, he already knew what that was and could pronounce it better than I could! What a blessing! Then he went back to his office and showed me a   framed picture of another patient of his with the same condition! We knew he’d be a great doctor to our little girl after that. He even helped us find our first specialists, and let us know about another mom who was in my position. But that’s not all. He has been there for our family since the beginning and every major step in between. He helped us get our disabled parking placard and our flights to Philly too. In fact not too long ago I was on the phone with him working out the paperwork for Mercy Medical Airlift. Any time I needed something done quickly he was there for us, despite having a rather large practice and many other patients. He will be missed. Dearly. There are not many other doctors who would make me cry after hearing this kind of news; he was special to our family.

Before we hired him to be our doctor my husband asked him if he would promise to live long enough to see Laelia through to 18 years of age. He was the kind of doctor you could joke about that with. He promised. For some reason that’s the memory that stands out the most right now.

We’ll miss you Dr. Schwartz!

And as you always said to me:   May the Schwartz be with you! :’-)