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.

“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* 

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!

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.

I feel so relieved to announce that we got the call and Laelia is back to full school on Monday!

Thank you, everyone, for all your support and encouragement and referrals and help and emails and law clarifications and lists of contacts I could pursue and prayers and and and… and it worked! We won!

Thank you! Thank you! There were people I don’t know helping us and people I barely know getting mad on our behalf. Then there was our family and friends fighting hard and being that backbone to our life that keeps us standing straight instead of slumped over, defeated by the day’s battles.

I was surprised to have to fight this battle. I was surprised by the lack of information I had a mere two days ago because of the ignorance of some of the professionals I had to rely upon. I’m depressed I have to be “that mom” for many years to come. It looks like such a long, hard road ahead from my perspective.

I had geared up for this long, drawn-out war only for it to be resolved in two days! But I’m not certain it was due to a realization that what they were doing was wrong or illegal, but more likely because Laelia is such a model, well-behaved student. So more work has to be done. With the help of an advocate who’s sister found us, I’m hoping to spread awareness and education to the little school my daughter loves. I’m also going to see if Laelia needs more support in the form of an aide, and then I plan on being very obnoxious until she gets one.

So why was this so illegal or wrong? Below I quote my new-found advocate:

***
I was just reading over your letter and you were quoting the ADA- this is a start and does cover education..
However, most importantly when addressing the schools you want to look at two laws specifically that outline your child’s rights..
These are IDEA ( Individuals with Disabilities Education Act) and FAPE ( Free Appropriate Public Education).and section 504 of the Rehabilitation Act of 1973
FAPE: Under Section 504, FAPE is defined as “the provision of regular or special education and related aids and services that are designed to meet individual needs of handicapped persons as well as the needs of non-handicapped persons are met and based on adherence to procedural safeguards outlined in the law.” Under the IDEA, FAPE is defined as an educational program that is individualized to a specific child, designed to meet that child’s unique needs, provides access to the general curriculum, meets the grade-level standards established by the state, and from which the child receives educational benefit.
To provide FAPE to a child with a disability, schools must provide students with an education, including specialized instruction and related services, that prepares the child for further education, employment, and independent living.

Rehabilitation Act: Section 504 states that no otherwise qualified individual with a disability ( YOUR DAUGHTER) in the United States, as defined in section 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance (HEAD START!!) or under any program or activity conducted by any Executive agency or by the United States Postal Service.”

***

From my talk with the principal, their view is that it’s a matter of protecting the teachers and making sure there’s enough care for Laelia. An admirable goal, but that goal isn’t reached by kicking out a student, it’s reached by fighting for the resources we need for this student. (Especially when you’re federally funded and she’s a new challenge because of the treatment for her disability… that’s discrimination!)

And I’m so awed by the fact that now I know if this ever happens again I have the full force of all of you behind us! I had this flood ready to be unleashed! Thankfully I never had to use you or you all would have been a sight! They wouldn’t have known what hit them! Haha!

It’s been so emotional for my husband and myself since returning home. Having to take four planes across the country for major surgery adds this punch to the experience that leaves us emotionally fragile for weeks. Not a good time to kick my daughter out of school, because after what she’s been through does anyone still think I’ll let anything bad happen to her? Seriously?!!

Ugh!

You know, Laelia’s disability has never been the hardest part of this journey.

Today my daughter got kicked out of preschool.

I knew once she joined that gang and started doing drugs and bringing knives to school that it was only a matter of time. Oh wait, my daughter wasn’t able to stay at school today because SHE’S DISABLED. More specifically, she couldn’t stay at school today because the treatment for her disability is serial casting or post-surgery casting, and casts are apparently, all of the sudden, out of the blue, not okay.

Today my husband attended a meeting with Laelia’s principal, PT, immersion teacher, classroom teacher, disabilities coordinator person, etc. They, as a concession, could take her back for half her contract hours (half days) and then kick her out when her aide leaves for the day at 12:30pm. They’ll “see” about more than that. When I say “they” I’m referring to the principal more than anyone. And they can do this because her IEP only covers half the day.

Today my husband said he felt as if he failed his daughter.

Today we found out that our special education coordinator, who we felt was Laelia’s advocate alongside us, no longer has that position.

Today I comforted my daughter because she was upset and she wanted to go back to school. I had to explain that right now her wheelchair and her casts have made the principal of the school uncomfortable and we have to wait until someone can help mommy and daddy convince them that she’s a great student!

Today I had to research the ADA (Americans with Disabilities Act) to figure out if they can deny her what she would have if she weren’t disabled.

Today I Googled lawyers, not for the first time, that can maybe help me enforce her contract hours at school.

Today I left work to try to play “school” for my daughter. Today we tightened our budget.

Today I wondered how we were stupid enough to get ambushed like this. They ALL knew about this surgery since before the school year started! It was mentioned in her IEP for crying out loud! There was clearly a 100% chance she’d come back to school in casts. I reminded everyone at that school that we’d be back in casts on December 1st before we left for Philly!

It doesn’t make her any less mobile than before, by the way. Casts actually protect her better than next month when she doesn’t have them!

She had surgey and casts last year and went back to school! She will have surgeries and casts and serial casts all her life and cannot just NOT go to school because you don’t want her there, people!

The principal did pull me aside before we left for Philly to say they had “concerns” about not having enough help, but I thought that was being worked out. And I never thought they could do this! Do they not realize that if they can bully (YES BULLY) us out of school based on the fact that our daughter is “hard” on them, then she’ll always have to deal with fighting for her rightful place alongside her peers? If they can’t afford watching her, and that line of reasoning works to keep her out of school, then they can blame the budget or economy every time they take something away from her!

SEC. 202. DISCRIMINATION. 42 USC 12132. “Subject to the provisions of this title, no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.”

What would they do if a typical child came back in casts?

School obviously is too much for her and too hard for them, but Disneyland is fine. Um… yeah. They may not want her, but Mickey will take her!

Cold day at Disneyland.

It’s a Small World After All!

She sang along!

L for Laelia!

The one drawback to having a wheelchair instead of a stroller is when she gets sleepy she can’t recline.

Today I treasure my beautiful, bright and well-behaved girl.

Today I’m dizzy, nauseated and mad.

Today I promised myself I would treat this as a growing experience and learn how to communicate and educate the people I feel are persecuting us for their own ease. Today is a challenge, not a setback. I think I believe that.

Today my daughter asked a billion times to go back to school. She was only able to stay a short time and she’d been looking forward to going back since her surgery. She tried convincing me with reason. She tried “please.” She promised she’d be nice.

Today I cried.

Today I wiped my eyes, took some nausea medicine, pushed my glasses up my nose, rolled up my sleeves and sharpened my claws.

This is a battle I cannot lose.

Friday was the best day. We had our flights scheduled for 5:00 pm that day, but we were planning on delaying those flights because I didn’t think there was any way we could go home. So when our doctor discharged us at noon that day I was shocked!  It had only been three days since her surgery, but Laelia was already doing so much better. She looked battle-damaged and weary, but her little imp smile had come back. Shriners was wonderful and let us borrow a wheelchair for the trip home. (Our insurance is changing during recovery and wouldn’t cover it so Shriners just handed us one.) And they fitted us for a new car seat that would be better for her wide casts and took our pink car seat in a temporary exchange so we wouldn’t have to carry them both home.  

Car seat fitting.

Watching TV in her wheelchair. Mama is resisting the urge to pinch those cheeks!

Friday was a great visitor day! Just three days after surgery and she was already so so so much better! Plus we finally got to meet Tracey Schalk in person!

Tracey is on the right. We’d been friends online for a while. Tracey is great! Anytime there is someone with AMC in Southern California, Tracey inevitably finds them and sends me their contact info from Ohio! Tracey came to our room and gave Laelia a surgery present! Tracey and her mom, Cheryl, had emailed me a lot about Shriners in Philly and how to get Laelia care there. They, along with the support group (amcsupport.org), never lost hope in Laelia’s future even when five doctors did. I was so happy to finally meet them! And I love the Dr. van Bosse Fan Club shirt! I want one!

Friday is also clinic day. So we knew a few other kids with AMC would also be there! It’s so rare to find kids with AMC, so it’s weird having so many in a waiting room! This really does feel like AMC Mecca sometimes. So using our new borrowed chair we went down to the forth floor. We finally met Tammy in person too! I recognized her from her facebook pictures. And her daughter, Sophie, and son, Ben, both have arthrogryposis. Laelia is Sophie’s “mini me.” When Sophie learns to do something (like drink from a cup without using her hands) then we see the video and Lali is soon to copy her. Sophie was so cute; Charley was totally charmed.

When we were leaving the forth floor and waiting for the elevator, a lady I’d never met came up to me and asked if I was Laelia’s mom. I said yes. Then she looked over to spot my daughter smiling at her and verified that this was indeed Laelia’s family. Her name was Anna and she wanted to thank us for our blog and tell us it had been one of the things that had helped her get her son with arthrogryposis in to see Dr. van Bosse! She had just adopted him from China! You can read their story here. That was so neat! It gave me goosebumps! And of course during their stay, Tracey already had them connected to another family there who had adopted a little girl with arthrogryposis from China. Wow!

We had to say goodbye to our new friends and pack up to leave. We learned what pain meds to give Lali and how to change her bandages. (By the way, they didn’t make us go to a pharmacy to get her meds, they just delivered them free of charge right into our hands!) Then Laelia announced she was ready to use the potty! So after getting a potty and figuring out (with the help of a nurse) how to get her on there, and waiting through five minutes for the waves of pain to die down after being picked up and transferred onto it, she went poo poo in the potty! I couldn’t have been happier! What a great day! That may sound silly, but it was such a relief, and she looked so much more comfortable after that. 

At noon I ran back to the Ronald McDonald house to check us out. I followed the check list and changed the sheets, made up the beds with the comforters, folded the blankets, turned off the heater, cleaned the bathrooms, wiped down the walls and vacuumed the room.  I made sure it would be perfect for the next family in our situation who would come for comfort and rest. Then I took the trash out to the dumpster, grabbed some Cheerios out of the help-yourself pantry and paid our bill in full which totalled less than one day’s stay at a hotel! Love this place!

Then we decided since we had two and a half hours to spare that we would drive the 40 minutes to the airport, drop off Mama and Miss Post Op, then Charley would drive downtown and return the rental car and take a cab back. This was an alternative to going downtown together and then having to take a shuttle back. The plan would have worked too, except for the meddling traffic. So last minute in the drop-off zone of the airport we had to move all our stuff into my bag in case we had to fly back without Daddy. Charley helped me carry the kid in her car seat, her wheelchair, our giant bag and a back pack into the airport and then he drove off towards downtown. I watched several people walk right past me as I slowly dragged everything at my feet one inch at a time. A couple in their forties with one bag between them stopped behind me and I thought they were going to help me, but they had thought I was in line because I was going so slowly. Then they complained under their breath about me being in their way and moved past me. A couple of security guys stood there and watched me. Finally I made it all the way to check in–dragging a car seat with a kid in it, then going back and dragging the bags then dragging the kid in her car seat a few more inches, repeat repeat repeat. It took me half an hour. At the front I set up wheelchair assistance for the rest of the trip and then waited for assistance. As I waited I worried about my husband who was now very late. An airport employee took my daughter (only airline employees are allowed to pushthe wheelchair) to our gate as I followed. Charley wasn’t at the gate either. In fact I was starting to steel myself for a solo flight home with post op kid who needed pain meds on the plane. Then I saw Ryan’s family and realized I wasn’t alone. We found out that our buddy, Ryan, and his family would be on the same flight back with us! These kids are practically twins. So cute!

Going home with our read-headed twin, Ryan!

Charley showed up minutes before boarding, then he took off to get a slice of pizza! That turkey.  Laelia slept on the plane like a champ, even though she was somewhat restless, tossing her head around. But right before our decent into Denver, Laelia woke up crying out in pain. Her legs hurt her and she was grabbing at her casts, face contorted. We decided to unbuckle the car seat to lay her across our seats and give her the liquid meds. She didn’t swallow them of her own volition so we had to lean her back and force it down her. That’s when we realized that the seat belt was stuck on the inside of this giant, borrowed car seat. I was near tears and she was crying in pain and we considered cutting that airline seat belt off her! The problem was that the car seat back was too narrow. So you can buckle it, but you can’t lift the darn flap to unbuckle it. We didn’t have this problem in the car since it was a push button release.  It took a long time to get it unstuck; Charley cut up his hand doing it. The whole time this guy sitting behind us kept saying super helpful things like, “His ears are just not used to the altitude, he’s fine Mom.” (Taking out our daughter’s earrings for surgery made her a boy no matter what pink dress she was in. And could he not see my child was in full leg casts???!) Finally we were able to get her out, give her meds and put her back. That’s when the person in the middle seat in front of us leaned his seat back and we saw that the seats went too far back and if the lady in front of our daughter leaned hers back it would really injure her! So diving forward, Charley explained our situation to the lady in front of us and we offered to switch seats with her if she wanted to lean back. She smiled and told us she realized the situation the moment she got onto the plane and had already decided she wouldn’t risk leaning back with that poor baby behind her. Whew.

For the next flight after a couple hours lay over we asked the boarding agent to move us to the front of the plane because of the leaning-back situation. He changed our seats, but it turned out that the car seat was too wide for the front seats with their fixed arm rests. So we had to switch seats with the second row (who didn’t like that they couldn’t get to their bags anymore) and the young lady in front of us was given free tv by the flight attendent for the flight if she promised not to lean back. She complained, but agreed. When we thanked her and offered to switch seats if she wanted to lean back she just said, “Whatever, it’s fine” but continued to complain that she’d had a long day of flying… childless, pain-free flying. I wanted to smack her.  

When we arrived in San Diego I was so ready to be home. Laelia was due for more pain meds and I wanted to put her in her own bed to let her finally sleep soundly. Unfortunately the wheelchair assistance I had set up fell through. We waited 25 minutes for a wheelchair and the lady at the gate said, in effect, “too bad.”  They said it was too late for wheelchair assistance (after 11:00 pm) and the couple of pages they sent out over the PA for a wheelchair were unanswered. Our own wheelchair was downstairs in checked baggage so we were stuck. Charley started to slowly drag her car seat down the airport corridors. After ten minutes of dragging we saw an airline guy walk by with three wheelchairs! We were relieved and waved him down to explain through the exhaustion that one of those was for us. He asked what airline we were on and when we said Frontier he explained that these were for American airlines and he left us there. So we dragged her in her car seat the long length of the airport. Every time she went over a bump she cried out in pain and I snapped at her dad. I was ready to kill someone at this airline. I hate traveling to Philly. Hate it. Hate it. For every airline person who is kind to us, ten are not. Seriously.

When we got to our bags downstairs, Adam was waiting for us. He lifted Lali’s car seat up with her in it and carried her right out to the parking lot! Adam drove us home and we walked in the door to, not joking, this:

Clean!

Clean! (The stuff on the table I put there afterwards.)

Labeled tubs magically appeared in my cabinets.

Everything was organized!

No more “junk” drawers!

The kitchen cuboards were cleaned and organized. A spice rack appeared in there!

Laelia’s room was the best part!

It was so much roomier with the crib stored. The cubbies were new and everything was clean! Even all her clothes were folded! She loved it!

The night before we flew to Philly, Lauren and Chelsea had come over to clean. Lauren tackled my kitchen like a pro while Chelsea took some notes. I left a key because Chelsea said they were going to “finish up” while we were gone. Well apparently for the five days we were gone Chelsea and Adam and Brenda and Laura and Dorothy cleaned and organized our whole apartment! I can’t express how wonderful this was! It was like walking into a stress free environment after days of stress! At first when we stumbled in Friday night I did noticed it was clean and I was very thankful, but it wasn’t until I gave Lali her medicine and put her to bed that I was able to relax and notice my surroundings fully for the first time. We slowly realized the extent of the work put into our place. It is rearranged to make best use of space. Things were purchased that we didn’t own to make it more organized. And Charley and I went around opening random drawers that were all completely cleaned and organized! It was like Christmas morning! This was an overall giant cleaning/organizing  job that must have taken hours and days and so much effort–I can’t even imagine!

Laelia slept for ten hours that night, making it the longest stretch of sleep she had gotten in almost a week. Her record before this was four hours. Being in her own bed, surrounded by her toys instead of monitors, did the trick. It almost made flying that Friday (a crazy endeavor) worth it.

In the next couple of days (through the weekend) we had some fun worries when her incision site decided to make us needlessly worry.

Is that spot gangrene?! Does she need antibiotics? Nope. It was fine. But we panicked and called the doctor anyway.

What in the world is this large purple thing that’s hard to the touch and popped up over night? Turns out it’s bleeding beneath her skin. It hurt her one morning and she had me rub it. Then this happened. Doh. So I emailed this picture to Dr. van Bosse and got an email reply immediately that calmed my fears. (What doctor emails you back? And quickly?!!) 

So the above two pictures were the cause of some panic, but looking back on this whole adventure Laelia is healing well, recovering nicely and on track for getting her casts off on January 7th!

Also one thing that made everything better, and this was my life saver, was apple sauce! Her liquid meds are best taken with apple sauce because it covers up the taste beautifully! I haven’t had to force anything down her throat since discovering this! We tried mixing it with other things, like chocolate pudding, but nothing works as well. This is so much better than having to squeeze those little cheeks and make her choke! Apple sauce. God’s gift.

Laelia hanging out.

Today marks exactly one week since her surgery, and I can’t believe how miraculous this kid bounces back from this stuff! She’s doing well. We can now pick her up using a blanket under her for support and it only causes her a little bit of fussing that she quickly gets over. As of yesterday (Monday) she went all morning and afternoon without pain meds. Now she’s down to taking a little something before she sleeps. She’s got that cute little personality back and she is already wanting to help with laundry again and play with her kitties. It’s gonna be okay. People told me it would be “a hard week,” but I never knew exactly what that meant until now. Yes. It’s a hard week. The first 24 hours are the worst, by day three it was a lot easier on her and just seven days later she’s singing and laughing and playing again. I have a lot to be thankful for right before Thanksgiving.

It’s days like this that I realize all over again that my baby girl has arthrogryposis, type amyoplasia, that she did nothing to deserve, and what that means for her life–a life that is a total blessing to me.

We are leaving in three days to fly all day to Philadelphia. Then on Tuesday, November 16th at around 6:30 AM, Laelia will have her most major surgery yet.

The surgery is five words long: bilateral (both sides) proximal (nearer to the body) femoral (thigh bone) reorientation (change position) osteotomies (bone cuts).

What they do is cut all the way through the bones extremely close to the hips, removing them and then clamping and pinning those bones in a slightly different location facing downward. Since Lali has joint contractures (which is when the joints harden and don’t move) in her hips, and doing surgery on the joints themselves will cause her to be immobile, we are hoping to move her bones around her contractures so she can one day stand. We don’t yet know if she has the muscle strength to stand or walk (because of the muscle weakness of amyoplasia), but she will never be able to even have the chance without this surgery. Right now her legs are externally rotated so that her knees turn out and she can’t bring her legs together. With this surgery the thigh bones will still be facing outwards, leaving her legs externally rotated, but the bone will be positioned downward so she will, for the first time in her life, bring both her legs together.

Think of a ballerina doing first position. We also call this surgery the sitting-like-a-lady surgery since right now she sits with legs wide apart.

The surgery will take many hours and require weeks of recovery as well as six weeks in a lower body cast connected by a bar at her feet.

A year from now they will do another surgery (in Philadelphia) to remove the pins and clamps that will be inserted internally into her body and at that time they will be doing another major surgery on her knees and left foot as well.

I’m having a bit of stress today as we are still trying to get a rental car worked out, we don’t know if Ronald McDonald house will take us (we don’t find out until the day of) and we’re not packed. Also if any troubles come up during surgery and we’re unable to fly back on time then that becomes another expense and headache to work out. And sickness is going around town, Charley is on antibiotics, and we can’t risk Laelia getting sick right now.

Some wonderful friends are dropping by Sunday to help me clean so we can bring Little Miss Post Op home to a clean environment. We’re looking at some hard weeks ahead. We’d appreciate everyone’s positive thoughts and prayers for success as we proceed. Thanks.

Arthrogryposis

(taken from Tracey)

(Laelia has Amyoplasia.)

Arthrogryposis Multiplex Congenita (AMC) means: Multiple Joint Contractures Present at Birth

A joint contracture is a joint that lacks normal range of motion, or in other words is still or curved.

Its an umbrella term, which means AMC can be part of many syndromes and other underlying conditions.

More than 3 joints have to be affected in two areas of the body to have a diagnosis of AMC.

It occures once in every 3,000 live births.

All joints can be affected including the spine and jaw.

Joint contractures develop because the unborn baby fails to move properly. Movement is vital to proper joint developement.

Cognitive development (intelligence) is almost always normal.

There are approx. 400 types of Arthrogryposis.

About 1/3 of cases of AMC are Amyoplasia type which is non-genetic and sporadic in the population. There is no known cause for Amyoplasia.

Most Distal Arthrogryposis types and most syndromes (like Escobar, Sheldon-Hall) are genetic in origin.

20-30% of babies born with AMC will die in the newborn period because they have a lethal genetic type or due to severe central nervous dysfunction.

Some individuals do not have an identified type.

Common joint contractures include: clubbed feet or vertical talus, extended or flexed knees, dislocated and/or externally rotated hips, internally rotated shoulders, extended or flexed elbows, flexed wrists, adducted thumbs (stuck-in-palm) and fingers that are fisted or extended.

There is no cure for Arthrogryposis, just treatment to reduce the severity of the joint contractures and increase the function level of the individual.

Treatment often includes: Stretching the joints multiple times per day, serial casting, tendon releases and lengthenings, osteotomies, splinting and bracing, external fixators and physical, occupational and speech therapy.

Despite the fact that there is no cure, most kids with Arthrogryposis grow up to be independent and successful adults.

More research needs to be done in the cause of Amyoplasia, mapping the genes in genetic types and long-term outcome studies for common surgical procedures in this diagnosis.

To learn more about Arthrogryposis: www.amcsupport.org

So much has happened since the last post that I find myself artificially paralyzed by the changes. I’m not a fan of change. I remember after that surprising shock of a double-lined pregnancy test when I had to comfort my husband (and myself) the only way I could: by promising nothing would change. “We can still go to concerts–we can still have a life; we’ll make it work! Nothing major will change.”  That promise shattered into a million pieces the moment she was born, and a million more the next day when she was diagnosed. So I’m grasping for energy in the midst of these changes, but not like a drowning man in water grasps for the surface, that sounds like way too much exertion, more like when my really fat cat tries to catch a small bug. Right in front of him. It’s the laziest thing you’ve ever seen, betraying a total lack of healthy energy or grace.

So funny story, IHSS (In Home Support Services) gave us a denial letter in the mail last week. I had to sign to receive it. The official letter was a joke of course. We had applied for this support almost three years ago back when I didn’t know how I’d go back to work with all of Laelia’s special appointments. And I had to go back to work or we couldn’t pay our bills, but no childcare would take my daughter. (We had little in savings since we had just spent our entire savings on a large, worthless emergency room bill. Long story short: I had chest pain and crappy school insurance. So Grossmont Hospital became the recipient of the money my grandmother had left me.) 

After Lali was diagnosed I called over fifty daycares to enroll my daughter, but they all refused. One daycare center allowed us a tour before denying us, saying it was dangerous for Lali to stay around other children when she couldn’t move her arms to protect herself from rough-housing. (False. She has done nothing but thrive around peers.) The last twenty or so calls were kindof an exercise in futility. I felt like I was racking up points in a video game. I would hang up with each one and laugh. I didn’t cry until I’d stopped at fifty, feeling I’d reached my quota. The YMCA stopped giving me referral numbers at that point too. We couldn’t afford the better daycare who took special-needs kids, so we were stuck with smaller, cheaper ones who wouldn’t take a liability… I mean disability… I mean perfect, wonderful child!  

So, where was I going with this? Oh yeah, so I applied for IHSS at this point. Copied from a website: “This program will help pay for services provided to you so that you can remain safely in your own home.” (I love how it makes the outside world feel scary.) Perfect! Anyway, I called to make sure they got the paperwork and it was being processed. Three years later they denied me in a letter.

Ha. Ha.

Also the other week I got an impudent call from MediCal (California’s Medicare). The rep started the phone call, in a rude tone, by demanding to come to my apartment. I had no idea who this guy was and couldn’t fathom someone this rude being a friend of mine who I’d invite over. I had to step away from my desk (at work) and ask who this was and what it was regarding. He angrily and impatiently said it was something I’d asked for. Once I realized it was MediCal I said I didn’t remember signing up for this. He rudely interrupted and said, “YOU said you needed this ‘immediately’! I’m looking right at the signature page. ALEXIS WESLEY JANURARY TWO THOUSAND EIGHT.” 

“Whoa, wait, is this the emergency help I needed for my three-month old? Years ago?! To help her to go to PT and OT for her arthrogryposis diagnosis because early intervention in these two areas is the only treatment for this incurable condition? And my baby NEEDED this immediately? And you ignored us… and it took weeks longer than necessary to get it? And she lost all this range of motion since we weren’t trained on her stretches that she now gets twice a day? THAT thing I needed immediately? And you’re calling me two and a half years later (your definition of ‘immediately’?) and demanding to see my home? Screw you!” *Click*

That felt nothing but good. And I’m a good girl usually.

I’m so grateful for wonderful government programs like Laelia’s Head Start school, and even her IEP that helps meet her needs at school. The system redeems itself here.  We actually accompanied our little girl to her first day of school last Thursday. She starts officially tomorrow, but Thursday we got to go into her classroom and do an orientation. Her teacher is WONDERFUL!  I truly felt this teacher wanted to work with us for Laelia’s benefit, like we were all one big team. Go Laelia!  What a special girl Laelia is to warrant such care and attention!  This teacher has experience with kids with cerebral palsy so she at least knows that the smartest little minds can have limbs that don’t always cooperate. Plus Laelia and CP kids have walkers, wheelchairs and other durable equipment in common. Her students from last year will also know not to touch the shiny red walker even though it practically begs to be played with.

Laelia’s walker now lives at school. It doesn’t fit in my car’s trunk and is hard to transport so we decided to keep it there. The walker has been hard. A while back when we asked Laelia to walk she moved a hesitant step forward by herself. It wasn’t enough to actually propel herself forward, but we cheered anyway! A couple weeks ago she managed to move forward without the therapist moving her left leg for her. Then for a second… a second and a half I think (say, “one one thousand, two…” and that’s it) she did this bouncy, run thing in her walker! (Technically it’s a gait trainer since it has a seat and holds her body weight.) It happened when we (her PT and I) had stopped paying a lot of attention to her and she saw a ball she wanted. So she kinda jolted her tummy and legs together and bam bam bam her little shoes made a noise I didn’t recognize on the smooth floor. I came home in tears! We had almost cancelled this appointment since I wasn’t feeling well. So glad we didn’t! Of course she hasn’t done anything remotely close to this since. :-/

Um… other changes… Well we just got some paperwork in the mail from Shriners for Laelia’s up-coming lower extremity surgery. It’s becoming more real. Another surgery that will lead to another surgery. But they happen in Philadelphia now. Just our random life I guess. She goes in November 16th.

And when she goes into surgery, she will be flying free of charge! I got an email from Midwest Miracle Miles who arranged complimentary flights to Philadelphia for the surgery! We were ecstatic! They even waived the baggage fees! Oh my gosh! Midwest recently combined with Frontier. So we couldn’t use Midwest Miracle Miles  on our last trip to Philly since Midwest didn’t have a hub in our area. But Frontier does! And mere months after the merge between airlines, we are reaping the benefits! Our coordinator, Barbara, is wonderful and has answered my questions even on weekends and Labor Day! I wonder when she gets a vacation or break? We have our flights! So happy!

We also have a date to start paperwork for Laelia’s power chair. It’s in two weeks. It’s a long process so we’ll get it probably around Christmas time, but on the advice of doctors and therapists and other smart people, we need to start this now.

This means we’ve started looking for a new apartment (*groan*) that does not have eight flights of stairs outside and one flight inside. Since our power chair can’t be lifted by mortal man, we need an apartment or house for rent that’s one story and not on a hill (so no steps inside). We’re having a hard time of this for many, various reasons. All of which, when I think about them, steal my life energy! (Nope, not overly dramatic here. ) *Pawing at bug… hard.*

We said goodbye to our babysitter, Megan, on Wednesday. She came over four days a week during the summer so this is another huge change for all of us. Laelia just announced that she’s going to see Megan and Joshua tomorrow and I had to correct her and say, “Actually you’re going to school tomorrow!”

“Megan and Joshua and school!”

“Um, just school honey.”

“Oh with my boyfriend?!” (she includes little boy’s full name)

*sigh* “Yes, school.”

I’ve made something like twenty-five batches of cookies in the last month. Gained five pounds. I’m really good at this now. Um, baking cookies not gaining weight. I can’t bake anything else, but I make the best chocolate chip cookie! I now dye them funny colors for Lali.

I brought four batches of multi-colored cookies to Disneyland yesterday. It was a Wesley family picnic outside of Downtown Disney with Linda and Phong and Grandpa and Grandma. Laelia loved it! It will be her last hurrah before school starts.

Okay I’m getting really tired now and will finish this post later. Laelia’s bag broke and she’s now taking my purse to her first day of school. This will be interesting. I’m putting her name on it and hoping that’s okay. Has anyone sent their kid to school with a purse instead of a bag or back pack before?  

In conclusion, lots of changes. Laelia is also turning three. Soon. NOT ALLOWED!