Archive for January, 2011

Busy!

Monday, January 31st, 2011

Kisses and secrets!

Can I have some?

Pictures of  the going away lunch for Adam and Chelsea as they head to Tanzania in twelve days.

We’ve been super busy lately. I had a frustrating experience today with Children’s Hospital and their scheduler. Charley and I  both. Ugh. They may call back tomorrow. So moving on.

Today I called CCS to ask how things were going. I think my contact forgot that she was suppose to call me, because she sounded surprised to hear from me. Evidentally she had forwarded our packet to San Diego South’s Medical Therapy Unit. So I got their number and  left a message on  their weird answering machine that didn’t have a greeting. Feeling weird about that, I called back later and got someone who asked if I was getting services for a tramatic event. (Oh those poor babies!) I told her  that Lali had been diagnosed at birth. She was surprised that we hadn’t done orientation yet so she said they would call me back tomorrow and set up an orientation. Then she mentioned that if it was more urgent (like a tramatic event) they’d also try to work out an evaluation. I quickly mentioned we had had surgery and gotten casts off on January 7th  and she said, “Oh! She had surgery? When?! Well we need to move faster! Let’s do the eval the same day.” Finally! I’m just relieved to be moving forward with an actual person who knows our situation!

I seriously don’t know how shy parents get these services. I feel like I’ve had to hassle every single person in this organization so far. I mean, I’m a nice bully. :)  I’m sure they didn’t set up this system to make  parents in hard situations  have to  go through this much hassle to help their children.

Today we also went to Laelia’s second ever chiropractor appointment. It’s so wonderful. She loves it so much! She tells  the doctor  when something feels good, and it all feels good. I set her on the table and she immediately laid down on her tummy,  put her head down and took a deep breath. So cute! Plus the doctor tells me she is the smartest, most well-behaved kid he’s ever seen. Love it!

Today I also contacted Laelia’s pediatrician’s office to get a referral to Johnson Orthopedic. It’s slow going, but eventually we may get this AFO fixed.  I followed  up with CPMG after we’d gotten home today and they were closed. Grrrr. I really hope between my work schedule, Laelia’s school schedule, doing a CCS orientation and evaluation and working this out  with insurance  that we can fit in an orthopedic trip tomorrow. I think it’s wishful thinking.  Wednesday we have a PT coming to our home  who is paid  out of pocket (as opposed to  going through  insurance) so we don’t cheat CCS.  I’m hoping she’ll give us a few more ideas that we can do at home! I’m thrilled that she’s coming to us!  Thursday we have an occupational therapy appointment with the best hand therapist in the world, Jill Peck-Murray, to get Laelia’s splints adjusted. Friday we have another chiropractor appointment and also my dad and Christina are coming to  visit! Then after a weekend of fun with them, we’re all going to Disneyland on Monday!

I really need to clean. No time.

Tonight Laelia’s stretches were easier. Maybe it’s the fact that I do them every hour or so  instead of once a day now.  Laelia was even able to count down the 30 seconds out loud with me instead of just  screaming the whole time. It’s just very nice.  

We also have the dorsilflection straps on her left AFO up to the line! That means it’s on correctly! Twenty-four days after we got them and  I have one stupid shoe on correctly. Hurrah!  :)

Okay the correct AFO lasted exactly 19 minutes. She just screamed her head off and it’s far enough past her bedtime that I loosened it. Still, we’re  getting there.

My throat is still sore and my back hurts, but I’m doing much better physically. My vertigo episodes are down to maybe two a day and that’s it. Also Laelia’s  sore (crater)  looks better I think. It doesn’t bleed as much so I think that means it’s closing up.

Our new rule about only watching cartoons while actively weight bearing is working beautifully. I’m thrilled with this. Laelia will even tell me, “Mama you need to pause Blues Clues. I need a break.” :) But while waiting for the chiropractor there was a television playing and Laelia had to point that out while grinning like she was cheating the system. :)

So things are better. Now I need some sleep.

Blood and Guts

Sunday, January 30th, 2011

We’re so tired all the time lately that I just broke down crying in front of a group of people I don’t know this morning. Thankfully they were wonderfully sympathetic. Laelia’s foot issue is worse. In fact I’ve decided to include some images of her foot that are disturbing so maybe you’ll want to hide the monitor from younger viewers before scrolling down. Her AFO (ankle foot orthotic, aka “special shoe”)  on the right foot has caused a crater that just gushes blood, making it unwearable.

That spot was getting worse and worse, and we were trying everything we knew  to keep the foot in the AFO (and keep it from re-clubbing). But nothing worked: not band-aids, “working” the straps, a cotton ball between the sore spot and strap, putting the strap as low as we could off the sore spot–nothing. So finally after the blood gyser  last night, we gave up and left the darn  AFO off her all night. It was the first full night’s sleep she’s had since January 7th. I wish I could say the same for us, but we were up worrying about bleeding issues, re-clubbing issues and dealing with guilt. With regular clubfeet we wouldn’t worry, but an arthrogryposis clubfoot likes to curl up very easily. They are the most stubborn feet! And we need that AFO to avoid surgery!

As you can see in the above pictures I put her back in her old AFO today that doesn’t do much for her and is too small,  but it’s better than nothing. There’s a hard piece of plastic between her foot and the strap on the old shoe so it doesn’t hurt that area as much. We are going to try and meet with Laelia’s busy pediatrician tomorrow (Monday the 31st)  so we can get a referral to an orthotics company ASAP  and try and “fix” the AFO. Her AFOs were made in Philadelphia so it’s not like we can march over there and demand they fix them. (PS: I had found the old AFO in my unpacked bag I had taken to Philadelphia. I haven’t found the time to unpack in almost three weeks!)

In other news, CCS has not moved an inch on our PT appointments. They have just sat on our paperwork with their thumb up a delicate part of their anatomy. I’m sick of this. We are waiting for no reason! I would fight this  tooth and nail and make a big stink if I knew how much longer it would take, but they won’t give me any idea! I would just hate to complain and then have them call me the next day saying they were done.  But it’s getting ridiculous waiting for people to just stamp an approval on our case. We already know we qualify for their medical therapy program based solely on our diagnosis! So why has this been so hard? And it was suppose to have been rushed since she got out of casts three weeks ago!!! And she was suppose to have been getting physical therapy two times a week for the last three weeks! So frustrating!!!

Since CCS are punks, we have had to try and push our  insurance to move faster. Our case manager, Gretchen, never returned my calls. Ever. Thanks Gretchen. But thankfully we got a new case manager through CPMG named Stacy. My husband likes to say, “The best thing about Stacy is that she answers the phone!”  But actually we like Stacy for more than just that. While I was down with a bad cold and sore throat, Charley took up my job of  calling and bugging people. :) He reached Stacy and they spoke on the phone for over an hour! Incredible!  She gave us ideas about how to  work the system to get Laelia’s  AFO  fixed, and she seemed to understand how important this all was. Finally someone helpful! Prayer answered. Stacy even gave us our much needed PT authorization!   Then  Charley  immediately called Children’s Hospital who only has one scheduler person who doesn’t work Fridays!! Ugggggggh. So we finally have auth, but still not PT. Hopefully soon.

While Charley was on the phone with Stacy, Laelia was rubbing my foot to comfort me since I was miserably sick. She’s a total sweetheart and just cares so much for people!  Then she started “reading” me stories. At one point she said, “Mama, I’ll read you a God story.” Then she grabbed my Bible off the coffee table and held it in front of her upside-down, opened to the middle, and began,  “Once upon a time there were three little pigs and a big bad wolf.”   :) Best Bible story ever! :)

Laelia is adorable. Even when she’s in pain she’s adorable. On Saturday we went to get our family picture professionally taken for the first time ever. I knew Laelia was in pain so I told her I had a present for her (small thing of bubbles) if she could last the outing with a good attitude.  When she’s in pain the slightest thing can set her off. (I’m the  same way.)  So when she was playing with a picture sample and it got taken away she started to act up. But then immediately  as if by magic she  changed her tone and  apologized to the people nearby.  Right  as they were praising my parenting she added, “Now where’s my present?” :)    

She was also a good girl during her first ever chiropractor appointment on Thursday! We’re trying to see if  working her spine will allow her more range of motion or strong, more stable movements.  The chiropractor loves her because  she follows all his directions perfectly. She laid her head down  on the table and  took deep  breathes as he pressed down on her lower back. I thought she’d  throw a fit since he was a doctor and he was touching her, but I think his blue jeans and  great voice (better than Ted Williams!) put her at ease.  It looked relaxing! Charley and I found ourselves watching this happen while holding hands and grinning.  I didn’t know my wiggle worm would enjoy that so much!   Because she was so great  she got to pick the dinner of her choice. She chose Apple Jacks cereal dipped in ketchup. And that’s the last time she’ll ever get that deal. :)

Also, and this is exciting for me, we have a new rule in our home! The rule states that there will be no more watching TV or movies of any kind unless doing active weight bearing at the same time. (The rule does not apply to adults or Saturday mornings when adults want to sleep in. :)) So far this rule is proving to be a great encouragement during physical therapy. Backyardigans and Blues Clues and KPBS shows  are even more enjoyable when you’re earning them! Plus she doesn’t overdose on TV this way since she can’t watch much while weight bearing. But even simple weight bearing (like sitting on a ball with Mama holding her hips) counts, so she can last a whole show. It’s working really well!

Also we received a gift from our dear friends to pay for private PT out of pocket until  CCS  does the right thing.  The  same friends also  put us in touch with a friend of theirs  who is a PT, and that friend put us in touch with a closer PT who will most likely be doing the therapy soon.  I’ll call her tomorrow. It has meant so much to me. I’m so blown away by people’s  generosity.

Another example of generosity is that  for Jewels for Jared,  our friends and family  bought bracelets  to support baby Jared and had them sent to Laelia in her size! She has thirteen (!!!)  $5 bracelets that  you all gave her! She earns them during PT exercises. Thanks so much! Not only did you guys support Jared’s medical expenses, but you also supported Laelia’s physical therapy too!  Bracelets are great motivation to finish a 30 second push up!

Okay we just put Laelia down for the night and it sounds like she’s sleeping. No screaming. I hope it lasts. We have to do Laelia’s foot stretches every hour during the day  since her AFO is not doing the work for us. The stretches have gotten easier, not because she cries less, but more because we’re getting used to it. I’m relieved that my baby’s cries no longer kill a part of me, but at the same time I’m not thrilled about being callused in that way.

So much is still up in the air right now. Where we’ll be living, how she’ll go to preschool in pain, what to do with my job and how to deal with  her  right foot are just a few of the unknowns right now.  We’re hanging in there though. Life with arthrogryposis is sometimes hard, but this girl has brought so much joy to our lives. I mean it. I wouldn’t mind having another one with the same condition.  Charley hears this and thinks I’ve gone mad. :)

Physical Therapy AT HOME

Monday, January 24th, 2011

Here are some of the exercises we’ve been doing at home recently. (Disclaimer: Yes she has a bad haircut. Yes I did it. Yes I’ve been thoroughly lectured. :))

Standing without her casts is much harder. She can do it for three minutes, but she gets REALLY shaky. She cries through it all, but she’s getting stronger.

So after my daughter’s PT exercises  last night  and during her daily massage I THINK I’m pretty sure I felt a quadricep! So I checked the other leg and I think I felt a little hard something there too! TAKE THAT AMYOPLASIA!!!! I quickly added quad stretches to the regime while singing a happy song. (Do de do.) :) Quaddy quad quads! (Lack of sleep is making me kinda silly.) *GRIN*

For balance she sits on a ball. I’m always right there with her, except she wanted the picture by herself.

Weight bearing through her knees.

Weight bearing through her feet (still on the ball). She’s saying, “Come on Pooh Bear, do your exercises.” Precious!

VIDEO TIME!

 

Tonight I taught Charley how to do Laelia’s PT exercises. My back has been really bothering me so I was very grateful for the help! Rocking back and forth strengthens her core and sitting with her feet on the floor then leaning forward puts weight through her feet.


Here’s Laelia going down the stairs. By request. :)


Here’s Laelia’s daily push up and what that looks like.

And I’ve saved the best for last. Here is Laelia doing weight bearing on her knees! For the last two weeks she just cried through this, but today she just happily watched her cartoon. All I had to do was pause it whenever she took a break and that was all the encouragement she needed to keep going! She even dances! So much improvement, it’s hard to believe this is the kid they said would never stand!

We also (not pictured) have stretches for every joint in her fingers, her shoulders, neck, wrists, elbows, knees, feet, etc. And there’s a great half kneel PT exercise that is really helping her stretch out her quad while putting weight through her foot. And all of these ideas I got from an evaluation appointment that bypassed our insurance! We still cannot get physical therapy through any organization out there. CCS has not even evaluated us yet, and our application with them is still pending, which is not cool. Shriners in LA is the same story. I’m just so thankful our local PT was able to share so much knowledge with us in a short time. Thanks Sylvia!

No Judgment

Thursday, January 20th, 2011

Yes I bought my daughter a doughnut today. If you had to have these stretches and exercises everyday then I’d buy you one too.

And  maybe I  just so happened to buy  TWO for myself. If you had to stretch and exercise this little darling everyday then  I’d buy you TWO too. :)

Thank you for participating in my self justification. Now don’t ask about the Snickers bar…

PT went really well last night!  We walked away with a  whole page of typed out exercises for PTing (word I made up) at home! *sigh of relief* I am finally less desperate and stressed. I’m so thankful this worked out! And I’m  so amazed it worked out too! Especially after being told no!

Because of some pain issues, Laelia’s not  quite able to do everything on the list, but I can finally write out daily goals and work on them at home! You should hear how thrilled she is about all this. “Please Mama, nooooooooo! No push up. No more stretches. I tired. Cuddle me. Pleeeease!”   This is when a good Mama would cuddle her, but I usually demand one more modified push up. :)

We showed up half an hour early for PT, filled out a ton of  paperwork we’d already filled out and lamented that we couldn’t also have an OT appointment (because now we’re spoiled). We did the full evaluation plus some good old-fashion PT (shhh, don’t tell my insurance) and walked out without paying a cent! We also returned all the different parts to Laelia’s gait trainer in a big garbage bag. It just made me realize that we’re closing a chapter in this stage of our lives. One I’m not sure will stay closed forever, but that largely depends on the quality of the CCS therapists.

I spoke with my contact at CCS who said that as of today all of the pieces of my application have been turned in and the whole thing is being considered for their medical therapy program.  We have the qualifying condition for their therapy program so it should be automatic.  Should be,  but nothing works that way here. I mean, seriously, we qualify  based solely on our diagnosis, of which they have multiple documents proving she has said diagnosis, which means we’re waiting because…?  Uh huh. I guess the person deciding if Laelia is eligable  has a large case load and does it on a first come first serve basis. But my contact, Melanie, has promised to call me as soon as she hears anything. And it does look like (although no guarantees) we’ll be getting our needed physical and occupational therapy from them  before February. Maybe. (No promises.)

Shriners  in LA will take three weeks to figure out that we’re already in their system! (Yay efficiency!) And they’ve requested a bunch of paperwork that I’ve already sent them before. They probably lost it; wouldn’t be the first time. (Shriners in Philly doesn’t have that problem.)

And my patient advocate at my insurance never called me back. In fact I have heard from her a grand total of zero times since starting this whole mess after Laelia’s casts came off on January 7th. And I’ve called  repeatedly. Boo.

I will meet with my boss tomorrow to discuss some  new hours for me to work around Laelia’s daily therapies at home and her commutes to therapies. Wish me luck.

And as far as Laelia’s poor feet (that hold up some of her therapy because of pain issues), we emailed new pictures of her feet to Dr. van Bosse last night  who emailed us back this morning (speedy!) with an entire list of things to help her. I love that! He included steps to follow! Yay! Some of thing  on his list are things  we’re already doing, like putting another pad between the sore spot and the strap. Then there are things like “working” the strap (to soften in up) that I hadn’t thought of doing. We also have the go ahead to ease up on the dorsiflexion straps (the removable ones). We’ve actually already been loosening these, but now we can do it without the guilt trips.  Or more  accurately, Mama can keep loosening  them without Daddy giving her guilt trips.  :)

Laelia is already  happier. Her feet are happier too.  And I guess  it turns out that the  “swelling” of her feet  is actually baby fat in the ankle  getting displaced into the forefoot making it look swollen.   The doctor says  it’s the  “Baby Beluga foot” that is common with this sort of  bracing at  Lali’s age.   So it won’t go down until she grows into her baby fat.  If anyone can find compression socks sized for 2T-3T I would appreciate it. I can’t find any that tiny!

Today we used a Target e-gift card we’d received for Christmas (thanks Annita!) to buy a potty for Laelia that goes over our big toilet. (We had been saving the  money for moving expenses but found out this week that the place we were moving to has some unexpected delays… that could be permanent. We’re now looking at other options.) I’m excited about the potty since the one we have doesn’t work for her. Laelia is already trained for going number two, but not number one. I’m ready to stop using our time restrains, her  pain issues and all this jumping through hoops to get care/therapy as an excuse to not potty train this kid!  Plus with  the new  position of her legs, she can now wear Pull-Ups!  Have I mentioned that I love her new beautiful straight legs?

(Have I also mentioned that I’ll have to change her IEP to get them to carry her to a potty at school? *sigh*)

When I got  the potty in the mail today it came with, I kid you not, a coupon for headache medicine! Ha! :) I’ll take it! :)

Oh and even though she’s not yet completely potty trained, she can change  the ring tone on my phone and turn on Netflix using the X-Box.  I can’t always figure out how to do those things, but I  go potty all by myself so thbbbbbbb! :)

Kids and technology these days. It’s nutty. Times are changing. We were at a doctor’s appointment the other day and I gave Laelia my phone to play with. Well the doctor came in and asked, “Who are you gonna call?”  AND MY KID  DID NOT RESPOND WITH, “GHOST BUSTERS!”    How has the world changed so much?

But not all change in bad. Check out her legs!

And just for fun. Click here to see her crossing her new legs.

Then click here to compare  how she used to cross her legs.

Love my chocolate-covered, un-potty-trained, ghost-busters-ignorant girl! No judgment!!! :-D

Cautious Optimism

Tuesday, January 18th, 2011

Guess who has a PT appointment tomorrow?!!!!!

“I do!!!”

It’s just an evaluation to get a real appointment, but it’s with Sylvia, our own  PT!!! So I’m thinking we can at least get some exercises to start  with Laelia. Yay!

So Sylvia’s (and everyone else’s) schedule was completely full. And I had been playing phone tag with two scheduling people at  Children’s Hospital (five phone calls total just today) before I decided to drive up  there and be annoying in person. And who  did I run into while waiting in the giant, slower-than-dial-up line? Our PT! The timing was completely perfect! She had a  one minute window as she came out to grab a patient and disappear again, and we happened to be standing directly  in her path! We had not planned this at all.  So I very quickly explained our situation as she walked by us. She said she wanted to see  Lali, especially before we made a switch to CCS,  and to tell the people up front that  she’d do anything to work it out. Well  fifteen minutes  later  I finally got to talk to the person I’d been playing phone tag with in scheduling.  (It’s always kind of  weird for them when I just show up. I’m sure I’m on some list somewhere that says, “Watch out for this crazy parent!”) Anyway she told me that she was about to “burst  [my] bubble,” because she just could not work out an appointment for us until February. Then I explained that I had been in contact with Sylvia (literally just minutes earlier for a few seconds, but I made it sound more in depth than that) and that I was under the impression something could be worked out. (I’m not easily turned away, not after three years of this.) So  I waited while she went back and spoke to Sylvia. Then some scheduling magic happened after Sylvia agreed to move her time around. So as of 5:15pm tonight we  have a  PT eval  for tomorrow!  Yay! Our insurance is still not worked out so it can’t be a real appointment, but this is much, much more than we had  hoped for! Plus I just  can’t describe how the timing had to be so perfect for all of this to have worked out!

So I started out my day on maybe three hours of sleep. Laelia went to bed last night at 7:00pm and screamed until 9:00pm (that’s with pain meds). Then she was up at 10:00pm. Then she was up at 3:00am. Then she was up at 5:00am when  Charley finally removed her painful straps and I  tried to get ready for work while she and her daddy  got  a couple more hours of sleep. It was the worst, tearful night last night and my brain was mushy mushy goo this morning. I was also upset when I found some blood in her sock last night. Poor kidlet.

Swollen, hurty foot with broken skin.

I spent a long time on the phone today. I was called back by one lady from Shriners this morning who was completely unhelpful. Apparently we’re not getting PT with them any time soon. This lady  kept interrupting me to the point that  I had to say, “Just let me finish my sentence!”  At one point  she (rudely) said, “You’re trying to speed up an internal  process you really don’t know anything about.” I responded, “Yes,  you’re  exactly right!” But she didn’t have a sense of humor, and when I asked about a pending prescription I had requested she practically hung up on me! My my. Anyway, not really a person I deal with like Mimi or Debbie or anyone I care about so I didn’t care much. I had too much else to do. One friend of a friend of a family member  I called this morning  was an assistant PT who suggested a doctor in Delmar who had a PT, Yoga instructor (turned out to be Pilates instructor) and chiropractor in his group. So we called them up and they had a cancellation for this afternoon! I printed all the paperwork off their website and started filling it all out while Laelia played with her duckies in her  bath. (Yes some pages  got a bit  wet.) Then we ran over there.

We saw the doctors, and while they were very interested in her (she was their youngest patient), they didn’t think they could help her. In fact their PT  couldn’t even  see her because the kind of PT they did was geared toward a different clientele and wouldn’t work on a small child.  But one guy we saw  was a  chiropractic orthopedist. (The only one in Southern California.) And he was very interested in seeing if he could improve Laelia’s life a little. He had no promises, but he was willing to try  different things and give us a discount (since this would be out of pocket). I’m very interested, but we’ll have to discuss it.  

I also had a good twenty or thirty minute conversation today with an Anat Baniel practitioner (for children) slash Feldenkrais practitioner.  Apparently another AMC mom (aka, a mom who has a child with arthrogryposis who we met in Seattle) swears by this. I’ve been watching videos of how this method helps kids with various disabilities (mostly CP), but I’m still not sure exactly how it works. According to the lady I spoke with at Moving to Learn, Inc. it does what PT doesn’t. When PT focuses on the injured limb and working with it, this would focus on everything else she can do (all her working parts)  and motivate her to move the injured limb by encouraging a whole-body approach. I’m a little resistant to their stance of getting children out of AFOs (since even though  we hate them right now, they work for arthrogryposis clubfeet), but I am tempted to give  this a try. I’m tempted to give just about anything a try. As long as this is more science than spiritual then I’m there. I definitely already  really like  the lady who we’d be seeing.

In the meantime I’m so dizzy.  The next step is to see a  chiropractor. Then an eye doctor.  I’ve already seen an ER doctor (when the vertigo was out of control), had an MRI, saw a neurologist and had two appointments with an ENT. Add all that to seeing my family doctor  too, and I’m vying for most expensive medical costs in this family. I feel so out of control with the dizziness. I almost went through a plate when I was doing dishes the other day, but realized I hadn’t actually moved.  It’s nauseating.  It starts to get  bad everyday around 11:30am and by 2:00pm  I’m miserable if I’m not lying down. Also  I’m getting headaches that accompany the dizziness.  I have a couple more leads on getting rid of it. Once I’ve exhausted those I’m not sure what I’ll do. It’s got to go away soon, right? Right?!!

So all in all I think some optimism is warranted. For the first time in a while I feel like things may just work out, even though many things (my job for example) are still up in the air.

Oh and my wonderful husband did four loads of laundry, cleaned up the living room, did the dishes, cleaned the counters and took out the trash today while I was out with Laelia. My hero! He also “made” dinner, which for him is driving to Chick-fil-A. :) Love him!

I’m also blown away by our amazing friends. They are constant encouragement and support when everything is falling apart. I have no idea how this many amazing people weasled into our lives. :) But I wouldn’t change it for anything! We’re definitely not alone, and we know it because you all tell us. Thanks for the referrals, kind words and offers of all kinds of support! It’s so appreciated!

Ow

Sunday, January 16th, 2011

“ow ow ow ow ow”

Everyday I give Laelia a long  massage while she relaxes. But it doesn’t make up for the fact that  these same  hands also do her painful stretches everyday too. Sometimes if Charley is feeling up to it, he will hold her down so I can stretch her while she writhes, arches her back and screams. We’re suppose to do these stretches  several times a day, but we only do the bad ones once a day.  I don’t think she would trust us to touch her if we  tortured her multiple times a day.

Laelia begs for cuddles all the time now, but instead of making me feel like a loving parent, I feel like an abusive one. I hurt her and then I comfort her. I hate arthrogryposis. I hate it. *cry*

Right now she’s crying and begging us to take off her straps. “Please Mama, take the  strap off! It huuuuuuuuuuuuuurts! Right here! Please, take strap off!”

This has nothing to do with her surgery either. This is normal treatment for her club feet and joints. After getting her casts off she got new AFOs (ankle foot orthotics, aka “shoes”) in her favorite color. But her shoes always hurt her. The straps always hurt her. Putting the tight shoes on hurt her. Taking them off her hurt. Sometimes she’ll cry when we look at her feet for too long. Red is also the color of pain.  They’re not even  on as tightly as they should be because neither of us can stand her painful cries, but they STILL hurt her! And I know the different between whiny and pained. She’s not just being bratty, in fact I’m pretty sure she’s the best behaved child in the world. She just  hurts.

 

Anyway, it just sucks. Not terrible. Not life-threatening. Just normal life with arthrogryposis. Another week and she should have adjusted more to the shoes, and then we’ll try to tighten them up more after that.

Oh and I’m still falling over. The vertigo that’s lasted almost five months now  has morphed into a constant dizziness with sudden spells that are pretty distracting. I’m still functional, but miserable.  My MRI was normal and I was almost disappointed I didn’t have the brain tumor they thought I might  have. Not that I want that, at all, but I want an answer and I want relief. This dizziness causes constant nausea. And I’ve fallen over and lost my vision when doing Lali’s stretches. Not cool.

On the plus side, I got a massage yesterday. I had two really bad dizzy spells right before and a few more after, but during the massage was pure bliss. So relaxing! I haven’t done that for years! I always worry about “pampering” myself when my time and money can go to better things, but this was worth it. I did all my daughter’s stretches and then put her down for a nap with Daddy. I was back “mommying” before she even missed me! I love Groupon. This massage was 60% off with my Groupon! :) (Now I’m a Groupon advertisement. God bless Groupon. Hehe. :))

Since having her legs repositioned, Laelia has had to relearn how to do many things she has done before like sitting up, scooting and going down the stairs. Today she went down the stairs on her bottom  for the first time in two months! Also today Laelia scooted up to me  (more slowly than before)  and said, “Mama, I has to do my stretches now, huh.” It wasn’t a question. I asked if she was ready and she said, “Stretches make me sad and they  help me.”   Then she asked, “Just not hard? Kay?” Then she squeezed her eyes shut. Just about stabbed me through the heart. She hurts, but she understands why she hurts. Not everyone is so lucky.

For example, Jared doesn’t know why he hurts when he’s having his episodes. Jared has arthrogryposis like Laelia, but also hydrocephalus and other concerns. He’s having seizures and scaring his poor parents who are helpless to do anything for him (and believe me they’ve  tried  everything). He needs more  medical treatment, but it’s ridiculously expensive and requires a commute. So his big sister, Braylynne  (age 6), is making bracelets to pay for medical costs and travel. They’re only $5 each. Just click on the link below.

http://www.jareds-hope.net/blog/?p=212

Or if you ever want to help them out, you can pass  anything to me and I’ll get it to them. Since paying off our medical  bills most recently and  not being able to go to therapy because of insurance drama, and not having to go back to Philadelphia for six months (glee!), we’re doing okay.  But they need to get their baby boy to the Hope Center in Philadelphia and  have a hard road ahead. Or if you don’t need a bracelet and just want to help, go here. But the bracelets are super cool! If you don’t want it, Laelia would love it! :) I can give her one after every painful stretch. Let’s cover her up like the Michelin Man.  :)

Having your kids in pain, no matter the severity, sucks. Thanks for letting me vent. Laelia’s life is a happy one and I hope to return to our regular uplifting blogs ASAP! :) I hope the next blog will be about how we miraculously are getting the physical therapy Laelia desperately needs!   *crossing fingers*  

Congresswoman

Saturday, January 15th, 2011

http://www.laeliasky.com/2011/01/14/karma/

The link above explains better what battles we’re fighting.

My name is Alexis ######, and my cell phone number is ###-###-####. My  aunt didn’t realize we had to disconnect our home phone number she  gave you.

I wasn’t sure about contacting my congresswoman so soon, but we are  fighting battles and my aunt is just feeling for us. My daughter,  Laelia, has a super rare condition called arthrogryposis. It only  affects 1 in 3,000 births, but it does occur in the populous enough  that I think we should be aware of it and what children who have it  immediately need: namely physical therapy. Arthrogryposis literally  means “joint contractures” which are the worst they’ll ever be at  birth. They need to be stretched and they need to start weight bearing  and sometimes serial casting right away.

When my daughter was born we had the same troubles (mentioned in the  link above) that we are having now. No one can get us physical or  occupational therapy in a timely manner. So why aren’t we more  patient? Well the problem is that timely physical therapy done  frequently can mean the different in these kids (depending on the  severity of the contractures) between walking and not walking, having  future surgeries or avoiding future surgeries, needing lifelong care  or being independent.

In America where technology and advances are so great, and information  and education so available, I don’t see why kids with arthrogryposis  have to fight tooth and nail to get basic treatment. Physical therapy  is the #1 treatment for this incurable condition. Sometimes the only  treatment; surgery should always be the last resort.

There were some exercises that we didn’t know to do with our daughter,  that if we had done (like weight bearing on her knees, something you  learn in physical therapy) might have meant she’d be taking her first  steps now. But we couldn’t get a PT appointment for three weeks after  she was born. Then that was only an evaluation while we waited  endlessly for insurance and doctors appointments and  prescriptions–all for the only treatment for this condition. It  should be a no-brainer! It should be automatic!

Our insurance got so expensive that it is now $40 (copay out of our  pockets) for one half an hour PT visit. Needing two visits a week is  not affordable. There is CCS (California Children’s Services) that can  provide PT, but it takes a long time. Waiting is not ideal for these  kids. We’re waiting now.

Once a doctor diagnoses arthrogryposis, that should be all you need to  get TIMELY physical and occupational therapy IMMEDIATELY. The next  available appointment with the nearest available physical therapist  should be granted. No exceptions.

I don’t really know what you can do for us, but if there’s any way you  can keep the next mom who has a child with arthrogryposis from waiting  weeks on end to get their child the only treatment the condition  requires, then you’ll have one more functional person in the world.

Or if there’s ANY way you can get ANY professional within 50 miles to  give us needed physical therapy immediately, we’ll take it!

Karma

Friday, January 14th, 2011

Me (said at work today): “I’m just going to give everybody the best customer service, and be super, overly helpful today so karma  will give  it back to me with all these medical/insurance people.”

Maria (coworker): “Sorry, karma is a sociopath.” :)

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! We haven’t been getting PT (physical therapy) because it gradually got too expensive and we kept cutting it back until we were going once or twice a month. And we found out that was screwing over our daughter. Her gains have diminished, and she’s three years old and is very behind in her gross motor skills. Plus now that she’s post op (just had surgery), PT is even more important!

I contacted CCS (California Children’s Services) whose brochure lists arthrogryposis as a condition that qualifies us for physical therapy. I spoke to a friend of ours in San Jose whose son is getting his PT through them for the same condition. (He also just had the same surgery.) His family did private insurance too until it got ridiculous. I filled out the paperwork and faxed it to CCS. My contact there, Melanie, said I needed a doctor’s note that shows Laelia has  arthrogryposis, and it needs to be from a doctor who has seen Lali in the last six months.

I contacted Laelia’s pediatrician for the needed information, but since they were busy and didn’t return my call right away I started in on her local San Diego surgeon who we saw the month before we flew Laelia to Philadelphia. (We like to keep him informed of what we’re doing. Good thing we saw him!)

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! All I need from this office is a piece of paper that says “arthrogryposis” somewhere on it faxed  to CCS.

I got transfered three times when trying to get a single doctor’s note. Finally I got a person who sounded like they could help me. I explained I was applying for CCS and I just needed proof of my daughter’s arthrogryposis in the form of a doctor’s note. This person told me that I did not qualify for CCS and asked if I was trying to get into MTU. I asked her what those letters stood for and she said, “MTU–(slowed speech) Me-di-cal Ther-a-py Un-it.” Oh okay well is that what the CCS  program is called where you get physical therapy for arthrogryposis? I still don’t know. I don’t know if we were ever on the same page. This woman told me I had to get a prescription for that and come in to see the doctor and other confusing, misguided, unasked for information.

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! All I need from this office is a piece of paper that says “arthrogryposis” on it faxed to CCS. (I’m repeating myself a LOT these days.)

She responded (dropping her voice to patronizing) that CCS was for the poor, uninsured kids (and spoke to me like I was taking great advantage of all the needy babies of the world), NOT for kids who obviously have private insurance! This is where I broke down and asked her if it was reasonable to pay $500 a month for therapy when we have a qualifying condition for CCS?! Did having arthrogryposis just mean you needed to be rich? Or if you’re middle class does having arthrogryposis automatically force you to go into debt or your child doesn’t get to walk one day?

She said she couldn’t help me, CCS wouldn’t take me and then she forwarded me to Susy (the doctor’s assistant) with instructions on what to ask for. Well Susy–wonderful, wonderful Susy–asked me what I needed, heard I needed a doctor’s note with the word “arthrogryposis” on it and said, “Okay.” Finally! But of course it’s not that easy. She first had to fax me release paperwork to sign before she could get me the doctor’s note. But she did it so quickly that it wasn’t a burden. And I was even able to use my fax machine at work.

Because of what I was just told by the other lady, I called up Melanie at CCS crying, “Is it true? You won’t take us? Please help us get my daughter PT! Please, we need it!” I got her voice mail so I went ahead and faxed in the application and the doctor’s notes. She called back and said it would take until around Tuesday to look over what I faxed in so we can talk in depth about it then. It takes time. So now we wait.

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I know I can’t use CCS and private insurance at the same time, and in order to get CCS I have to lose the therapists we do have (who I can’t see because of red tape, keep reading) who have actual experience with AMC and who are responsible for some of my daughter’s biggest accomplishments. So I am trying to see our local PT and OT so they can make a bunch of hand splints and give me enough advice to last me through the new guys. But Children’s Hospital’s Developmental Services require a doctor’s prescription and insurance approval. (In a good system you would have a card that said, “I have arthrogryposis,” and whoever saw it would drop everything and give you physical therapy on the street corner if necessary!)

So I spoke to my insurance (that switched from Aetna to Health Net), and got transferred a lot before a nice woman named Glendy said Health Net couldn’t help me and I had to contact CPMG’s medical management department for a new case manager and to check on the pending authorization that’s still up in the air.

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I called CPMG whose office was closed until 12:30 pm today, and then also closed for the weekend and Monday for the holiday. It turns out that it takes five business days to review and respond to a request for PT, but they never received my request!!! Ugggggggggggh! I explained to Andrea in customer service about my daughter and her immediate needs. I asked for a case manager. I had written a letter stating what arthrogryposis was and that PT was the #1 required treatment for it. I included pictures of Laelia and wanted to know where to send it. Andrea (customer service with CPMG) made the process sound long and hard and completely confusing. So I made her break down the steps for me. Who do I contact? What process is there to get a case manager? How do I get this NOW? Well finally I mentioned that our old case manager was named Gretchen and it turns out she’s still with CPMG, and even though our insurance changed, she would still be the one to contact. So I left her a message that she won’t get until Tuesday. I made sure to sound desperate.

Because we  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I then called Children’s Hospital’s Developmental Services. Alicia is the one who makes the requests of the insurance so I wanted to talk with her. I had already requested PT from them earlier in the week, but just found out Lali’s insurance doesn’t have it. Well Vanay (I’m guessing the spelling of her name here), who was taking over for Alicia since she’d been out since Wednesday and wouldn’t be back until at least Tuesday, couldn’t help us because the request wasn’t finished (no one told me there was a problem!), and they needed “something”–some notes or something, they couldn’t tell me–that wasn’t provided and wasn’t getting worked on! That’s why CPMG didn’t have the request. IT WAS NEVER SENT!!!!!!!!

But we  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

One thing Vanay mentioned is that maybe we needed an evaluation. Well we don’t, but it turns out we don’t need insurance approval for an “evaluation,” and maybe Sylvia would (wink wink) just do PT with us, so I agreed wholeheartedly that we needed an evaluation. Sure, whatever, just let us see our PT, and however soon we can get that is great!

It will take at least two to three weeks. Of course.

Which is frustrating because we  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

I asked Vanay to contact our physical therapist, Sylvia, and request we be seen sooner, to see if the evaluation be shorter so she can fit us in next week (which I was informed was against the rules) or that something, ANYTHING be worked out at ANY time SOON and we would be there. But they only had an email contact for Sylvia and they probably couldn’t contact her until Tuesday. (If they even tried.)

I’m crying now because we  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

Dr. van Bosse had mentioned that we could travel up to LA for PT if nothing else could be worked out. Since it looks like if I want my daughter to receive care in the next two to three WEEKS then I truly have no other option (or if CCS can only see us once a week then I’d be forced to  supplement it with traveling to LA anyway) so I called Shriners’ main number, explained our whole situation and waited the 24 hours it took for them to call me back. I spoke to Applications since I was told to, but they transferred me to Medical Records who got all our information so they could request medical records from the Out Patient Department in Shriners Philadelphia. The process will take–Can anyone guess?–two to three weeks! WHY?!!!!

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP! NOW! RIGHT AWAY! LAST WEEK!

I then called and left a message with Shriners’ Out Patient department in Philadelphia letting them know that they would be getting a request for my daughter’s medical records and to please get it to the LA Shriners people ASAP to cut down on the two to three weeks of processing time it will take to get PT. I’ll call them again on Tuesday. I’ll call lots of people again on Tuesday.

We  desperately need physical therapy two times a week for my post op daughter’s stubborn arthrogryposis. ASAP!

My aunt Linda R. wrote to my congresswoman, Susan Davis,  our governor,  Jerry Brown, and our    representative, Juan Vargas on our behalf. I did get an email from Susan Davis’ office asking what exactly they could do for us? “Make someone give us PT NOW,” didn’t sound like an intelligent request.

Really this is exactly what we went through when Lali was born, and delaying her PT and OT actually hurt her and has negatively affected her for life. Arthrogryposis literally means joint contractures, and they are the worst off when kids are little. The more you can work them when they’re little, the more you can avoid surgeries and more needs when they’re older. I’m serious that there should be something in place that when you have been diagnosed with a condition that REQUIRES a certain treatment, and without immediate treatment the child will not function properly in later years, then you should receive that treatment in a TIMELY manner no matter what the circumstances.

So that’s what I want. I want kids to get their treatments immediately because it’s important. I want a PT to come volunteer to do PT with my daughter or accept money out of my pocket instead of out of a government program or my insurance, both of which take WEEKS. We really are needing this now. I was told if I wanted my daughter to ever walk I needed to get PT twice a week and do a ton of therapy at home. Without direction from a professional PT, what can I do at home? I’m not a medical student!!!

So I was super helpful to everyone who called my place of  business today looking for basic customer service because that’s my job. I’m a service to the customers, not there to make their lives harder and my job easier. And I’ll be an excellent customer service rep for as long as I get to keep my job and until my daughter’s needs swallow that part of my life as well. I was just hoping that someone would take me on as a good deed for the day and save me a lot of grief. I already have to torture my daughter everyday, causing her lots of pain. Plus I’m suffering with stress and dizzy spells and other health concerns. Just once could someone help us? Find a way around the rules? Do the right thing?

Sheesh. Thanks for nothing, karma. You ARE a sociopath.

PS: If a mom of a kid with special needs says, “Yeah I’ve been fighting with insurance and doctors lately.” Just know that that woman is going through something you hope to never go through. Give her a hug and a spa day and then take the phone and offer to wait on hold with whatever heartless entity she’s battling so she can pee.

Tired of Hurting Her

Wednesday, January 12th, 2011

I’m old, Gandalf. I know I don’t look it, but I’m beginning to feel it in my heart. I feel… thin. Sort of stretched, like… butter scraped over too much bread. I need a holiday. A very long holiday.                          ~Bilbo Baggins

Pain reduces my little  girl into a ball of infant-like need. She loses her language skills, her manners and her ability to function. Laelia is in a lot of pain. I cause the pain. I think right now we both don’t like me.

Laelia’s doctor gave it to me straight. He laid out what therapy Laelia would absolutely require and how often to do it. I realized, as I immediately  started sobbing in front of him,  that what she needs is much more than  I’m providing now.  Constant care. Wow.  So I went home with a heavy heart as I tried to figure out how to make this work. Right now I’m only working half days at my job. And I’ve already met with my boss to try to  figure out what to do. Charley and I talked about me giving my two weeks notice, but instead we’re trying to work something else out with my work so we can still afford to move. It’s all still up in the air.  

Laelia needs so much. She needs stretching and massaging and all sorts of torture. Her AFOs are so painful. She screams when I take them off or cinch them up or look at them. She screams and cries most of the time I’m with her.

We don’t even put her shoes on correctly while she’s at school because she’d be in pain the whole day. And if it’s too hard on the school, God knows they’ll make it harder on our family.  I talked with a school admin on Monday who was unhappy Laelia still needed her wheelchair. This person really thought Laelia would be  walking after surgery and seemed  very put out. She mentioned it already takes  a long time  for Laelia to feed herself and get around as it is!  Ten bucks says this person doesn’t know the name of Laelia’s condition. Twenty bucks says  this person  has no idea how it feels to have a cast off and your atrophied limb stretched.  The admin  said, “Now  do you really want your daughter in a wheelchair for four hours?!” I wanted to say, “NO I WANT HER RUNNING AROUND!! OBVIOUSLY!”   I just calmly explained AGAIN what Laelia’s condition was and what her prognosis was. I’ve repeated myself so many times, I don’t know how I’m unclear! Bottom line: all her doctors, except for the one very special guy we travel 3000 miles to see,  tell me  she  will never  walk. Uggggggggggh!! I think this school admin person sometimes singles us out because a disability  is hard for them. During that same conversation with the same admin, they actually said, “Just tell me what you expect from us? What do you want us to do for you?” I hadn’t asked for anything at this point; besides asking where to  leave her wheelchair. Now would that person have ever asked that question of ANY other typical  students’ moms in that school? The answer is no.

I’m exhausted. I keep telling myself that the worst of the pain is behind us and the rest is  temporary. She’s reacting so badly to foot stretches that we’re considering taking her in for an x-ray to see if anything is broken. Just for peace of mind.

We’re not sleeping. Laelia wakes up several times in pain.

I’m a mess physically. I’ve been to  three different  doctors who can’t figure out why I’m dizzy or why I get vertigo. Laelia screamed for  twenty-eight minutes straight while we waited for  one doctor today. The receptionist was just putting phone calls straight on hold since she couldn’t hear over the cries. I couldn’t get Lali to calm down and I tried everything.  The doctor didn’t even  find the cause of  my vertigo and we went home feeling worse than when we went.

I’ve been crying for four days straight: at the doctors’ offices (both hers and mine), the grocery store, at work, while driving…

And if we didn’t need to deal with everything else, I’ve also  been trying to call my new  insurance who doesn’t know who I am, Children’s Hospital’s developmental services who doesn’t like that our insurance changed and won’t let us see our therapists for weeks, California Children’s Services who demand official doctors’ notes to prove she has AMC before processing our request (and if we do get them they won’t allow us to see our OT hand specialist anymore), Shriners Hospital in Los Angeles who we need to work out how to bus us to them, etc, etc, etc,  but  no one can get Laelia the PT she needs NOW. Shriners is the closest to providing it, but  that would mean being gone six hours a day, two days a week. Not ideal. And her doctor said if I can’t get her professional PT two times a week to call and write my local congress people and senators.  *cry*

Surgery without PT is like getting braces on your teeth and then once they’re off,  not wearing your retainer because no one will give you a freakin’ retainer for WEEKS and then your teeth go back to being a mess.  Stupid, right? Oh and no one will just work with us or make this easier because it would inconvenience them. For example, please no one take my word that Laelia has arthrogryposis. We just  like to give her surgeries for fun. Just assume we’re lying and demand multiple official copies of doctors’ notes from doctors who don’t return my calls.  Ugh! What? LOOKING at her isn’t good enough?

Okay I’ll stop being so sarcastic and angry. I’m just so  tired. I’m doing all this for the long term results. This is ALL temporary. Someday life will feel normal again, like it did before when we got on top of all her treatments, doctors and  therapies the first time. *deep breath* Sorry, I’m better now. :)

New Legs!

Wednesday, January 12th, 2011

Today at the grocery store I went to remove my daughter from the shopping cart and, before I even touched her,  she grimaced. She grimaces every time. Not because she hates grocery shopping as much as I do, but because her wide legs  always catch the cart, and her knees, that  stick out past her hips on either side,  bang against the metal frame. It takes two people to successfully remove my child from a shopping cart: one to hold her legs together and the other to lift her out of the seat. But  there was no one else around so Laelia grimaced. Like she always does.  

But what a shock when her legs slid right out!   For the first time in her life, my daughter  has legs that are positioned correctly to fit in the shopping cart seat!   Thank you Father God!  Thank you Dr. van Bosse! Thank you Shriners Hospital for Children in Philadelphia!

Laelia’s legs, a history:

10-10-07 – Laelia’s splayed, externally rotated legs at birth.

10-29-07 – Laelia’s first casts to correct her feet at three weeks old.

2/23/09 – One of our attempts to keep Laelia’s legs together. :)

2-14-10 – Laelia’s corrected feet (that finally fit into shoes) look great, but  her  legs  are still  so splayed and outwardly rotated  that  her toes point away from each other and her knees go off  in different directions.

(Her shirt says, “Dr. van Bosse Fan Club.”   Thanks Jessi!)  

1/11/11 – After seeing Dr. van Bosse and getting her osteotomies, Laelia’s legs are now straight! Her  knees now  crown her legs instead of jutting out to either side, and her toes point up instead of  away from  each other! She’s in the position most people have naturally when sitting or standing! And boy did she work for it!

The trip back to Philly was exhausting.

And required a lot of travel. Her friend, Justice,  gave her a push, but he didn’t go all the way to Philly so we had to get on a couple airplanes too. :)

When we got there it was so cold! Too cold for this little California girl!    Lali had  never seen snow before and asked me why it was  wet and cold.  She thought it would feel like pillows.  :)

At the Ronald McDonald House we spent time with Sophie, Ben and  their Mommy, Tammy! (The next day  the five of us would all get in a big rental car and drive to Shriners!)

Mama got practically NO sleep that night… or the next night… or on four of  the five airplanes we took. The reason for that was one little girl who would not let me sleep. The only sleeping she did do at the RMDH was when she was faking it for this picture. Mommy about strangled her. :-/

The next morning  we waited for our appointment with our friends. Here’s  baby Lexi!

Before cast removal.

After cast removal.

Lali’s new legs are so straight that I often find her staring at them like this. :) My favorite Laelia quote in her sweet little voice, “I’m very beautiful and straight now after my surgery.” Precious!

Her legs go together!

 

Her legs go apart! (She’s sporting the Wicked Witch of the East socks. :))

Oh and here’s a video of her waiting for Dr. van Bosse.

Laelia took FOUR baths while in Philly; I just emptied the tub when it got cold and filled it back up again.  Each time a new layer of dead skin got  gently massaged  off. She LOVED getting bath time back!

Laelia’s feet (especially the right foot) swelled up pretty bad  after our three (in one day)  airplane rides back home. It was because of the new, aggressive  AFOs and all the pressure they caused. Now she gets foot massages everyday until the swelling goes down.

But no matter how bad the travel, surgery, recovery, swollen feet or negative comments from strangers got, look at this end result! Look how straight she is!    Compare the above  picture of her lying on her side  to this!   Amazing, right?!

So now that I’ve gone through the eye candy (aka  pictures), I guess I’ll sit down to actually chronicle our journey. It was long and hard. Wait, that’s summarizing our journey. I guess it’s going to be hard to write about. Half of my brain no longer exists because of this trip; it was that exhausting.

I just want to say we had zero problems with flight attendants. Every one we met was courteous or helpful or nice. This is a major improvement from last time! And this is the first trip  where I prayed about this specifically.  It just made the whole trip seem surreal. Where were the fights? :) People I handed Lali’s card to were just really interested in her. It was great!

I also want to say that our needs kept getting mysteriously met. For instance, I got a rental car, but it was going to be too small to fit all my passengers. But before I even realized this I was getting help out to my rental car by a nice lady (just another traveler) when I heard her whistle and remark, “Wow, that’s a nice one! That must have set you back.” I was totally confused as my tiny rental car was unexpected, unasked for,  upgraded for free  to a larger vehicle! It fit all of us including three casted kids in the back, all our stuff,  a wheelchair and a double stroller.  

But not only that, our little needs got met too. I ran out of arms to carry things on the plane and several strangers at several different times helped me. Lali and I  were hungry but we  had no cash for the cash-only cafeteria so  they gave us  food  at no charge. We got lost,  but ran  into a security  guard we recognized who gave us directions. Getting lost meant I didn’t have time to stop for  gas for the rental car, but  Thrifty Rental decided to waive the fee and cover the gas.  It snowed, but we stayed on the road.  The Ronald McDonald House doesn’t take reservations, but we were able to stay  at the house  we wanted that was closest to the hospital.  Laelia was an excellent flyer and was well behaved through five airplanes! That in itself is a miracle! (And when we got back and I praised her in front of her father, Laelia beamed with pride.) I had a vertigo episode so bad that I fell over during Lali’s PT appointment, but that was the only bad one the whole trip and it was in a safe place!   Laelia would not sleep at all, so we ended up leaving at 3:00am our last night there because we were up anyway. We would have missed our flight if we hadn’t since we got lost, the elevators at the airport were broken and the flight was at 6:05am!

Pretty much lots of things just worked out. If I had written them all down, I could write a whole book of blessings! Our needs were met again and again. Our comforts not always, but our basic needs were covered.

I had  a sore throat, vertigo, stomach cramps (diarrhea and vomiting), a headache that only got worse when I got home, and stress and dizziness caused by lack of sleep while on this trip. I  didn’t sleep more than about three hours in four days. So this was a hard trip.  In fact, I got so sick the night before our appointment that I stopped up the toilet in  our room to the point that we had to switch rooms!

And the whole while  one special little girl refused to  let me sleep; she was too jet lagged and excited.  (She would not sleep the next night because  of pain and discomfort.)  I yelled at her once. I said–and I remember it exactly since it’s the second time I’ve ever yelled at her–I said, “I’m SICK and TIRED of YOU!”   Since then if I’m down or frustrated Laelia will  ask me, “Mama? Are you sick and tired?” It breaks my heart.

I  tried Lali in the bed with me, Lali in the other bed, Lali on the floor and even Lali in the closet! Nothing worked. She would not sleep. Finally in the middle of the night (around 3:30am) Lali asks me, “Mama, will I go to Heaven like Grandma if I die?” Okay now I was wide awake. I told her she wasn’t going to die, she was just  too sleepy and needed to get lots of sleep. (I was very desperate for sleep.) But she asked again, “Will I be with God if I die?” Sure honey, just sleep now. But it seemed to bother her so I cuddled her close under my chin, her fuzzy hair going up my nose, and said that she was God’s most loved kid. Then when it was clear she would not sleep I told her her favorite story of Adam and Eve. I told her how God created  Adam and Eve  and how good they were and how he loved to hang out with them and how Mama is sure they always went to bed on time and slept through the night. :)  Laelia loves to chime in that they ate the fruit when they weren’t suppose to and that’s called sin. And sin is “anything we think, say or do that makes God unhappy.” (Insert Laelia’s sad face here.)  And how sin pushes God away (insert Laelia pushing me here)  because God is holy. Then I resume my story once I get it back and add that God caught them in the garden of Eden all naked and ashamed so he sacrificed an animal, using its skin/fur  to cover their shame. And how the punishment for sin is death so people used to sacrifice animals to cover their sins temporarily. But how Jesus was called  “the Lamb of God who takes away the sin of the world.” And how he died in our place, to take our sin away in the same way. Then he rose from the dead. So Laelia said, “Jesus died for my sin like a lamb! Now I can be with Holy God!” And she accepted Jesus as her savior with all the passion of a three-year old trying to get out of bed time.

Before we realized it, it  was morning and we’d gotten zero sleep. Time to drag ourselves into the snow for cast removal, AFO fittings and a very special, life-altering (although we didn’t know it at the time)  doctor’s visit.

Our insurance change slowed the whole process down a bit. Cast removal was a dramatic event. Laelia screamed louder than I have ever heard her scream before. It was unnerving. And the screaming lasted as long as the cast removal, a whole 20 solid minutes since they had to saw around the bars. Then we were on to x-rays.  These were  the first x-rays she ever took in her whole life that she didn’t cry/scream through. (Small victory!) Then off to  her AFO fittings. That took forever. It was at this point that we realized no one had a small child’s potty for her to go number two in. And she was afraid of the adult toilet because she could fall in. So she had to go number two in  a diaper while waiting for the AFO guy, which embarrassed her a bit. When we finally got to our doctor’s appointment, AFOs in hand (well, on feet) it  was after lunch.

We briefly met Zak and his daughters, one of which is Grace who has AMC, and the Nalle family whose blog I follow. The Nalles adopted Aaron and this was their second trip to Philly–their first casting. Poor Aaron.

Then we finally got to see Dr. van Bosse. Even though he was pleasant as always, we were hit with a life changer. Laelia needed a lot more than what she was getting. She needed two PT appointments a week with a professional. She needed stretches and exercises several more times a day. She needed weight bearing. She needed her feet stretched. And if we couldn’t get these things then we needed to start contacting our local government. We could no longer just do PT and OT once a month because it cost $80 a visit. If she is going to walk, we needed to step it up.

Well I work full time so that creates an issue. Her school won’t do a darn thing, not even simple stretches. It’s a mess. Dr. vB also mentioned that if worst comes to worst I could have her bused up to Los Angeles to get free PT at the Shriners there. That would literally be  six hours away from home twice a week.

And on top of it all, it was going to be a painful time for Lali. Especially the first two weeks.

My husband and I aren’t always graceful in how we handle all this stress. Charley once asked me once I got home  to stop doing Laelia’s stretches in front of him because he couldn’t take it anymore. Laelia’s pain makes us crazy. And I get so upset with how everything has to be so much harder for her. She can’t do simple things seemingly everyone else on the planet was born doing naturally without huge effort, surgery and pain! It sucks! Laelia says, “Pain is good because it means I’m getting better.” At least one of us has a good attitude… when she’s not screaming.

And I’ve been dealing with her preschool as well. They are a government-run facility, meaning they can’t “quit me.” But the head admin there  can be the least amount of understanding as humanly possible to make our already miserable lives even more hard. It’s willful ignorance.

So life has changed, and life is hard, but we continue on. Our beautiful daughter looks at herself in the mirror often and stares at her straight new legs while smoothing them with her hands. I don’t think she gave it much thought before, but she now thinks of herself as very pretty.  And she  is.  

We weren’t given bad news in Philly, but we were handed change. And that’s always hard. I hate change. It makes me feel out of control. I like things to stay the same. But I know if they did then  my daughter would not  have her lovely straight legs. I just need to focus on the positive.

Maybe I’ll go  buy a shopping cart and then just spend hours putting my daughter in and out of it. Just for the fun of it. :)