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.

(I wrote this letter to a specific advocate today, but if anyone knows any other San Diego lawyers or advocates that could help me, please let me know. I have a feeling I could use one for the future as well, and of the two lawyers I know, neither specialize in this. I’m also still waiting to hear back from Mona in the SEEC program to see how she can help. Thanks everyone for the suggestions and support! I hope this letter is more clear than my emotional blog ranting and answers any questions anyone may have had as to the specifics of this case.)

Dear ########,

I don’t know what to do, but I realize I need an advocate or lawyer, and I may be needing it long term.

My three-year old daughter, Laelia, goes to Head Start on Home Ave. She has arthrogryposis. On November 16th she had surgery (her third major surgery). Head Start has known what day the surgery would be for months. Not only did they know about the surgery, but it was mentioned in her IEP before she was even enrolled and they KNEW she’d be returning in casts. She had surgery last year and was back in school in casts (it was Early Head Start at that time). Casts are unfortunately part of my daughter’s life, and will be, on and off, for some time.

We told everyone (principal, teacher, teacher’s aide, random teacher in that classroom her car seat is always in) that she would be returning to school in casts on December 1st. We actually came back December 2nd because her immersion teacher was out with the flu on the 1st and wanted to be there for the transition. Well on December 2nd my daughter and her daddy stayed for the sum total of one meeting where they found out that the principal wouldn’t let her come back to school full time. Then they went home.

We were told that we can come back part time and only stay until my daughter’s special needs aide leaves for the day at 12:30 pm. (Apparently her IEP only covers her for the first part of the day.) We both work full time and have had to put our bosses on notice that we will be taking major, unplanned time off after lunch.

Today I found out the principal “may” let her return to full day on Wednesday (next week, the 8th) “if” she feels it’s appropriate. The issue, she told me today over the phone, comes down to having no extra aide after 12:30, no money in the budget to get one and her IEP doesn’t cover one during the second half of the day.

I looked up the ADA website and found this: 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.”

I didn’t know they could just kick her out when she became difficult because of her disabilities. Can they just deny her a place among her peers because her disability requires an aide?

She has a surgery planned for next year and I’m so scared they will do this to us again. My daughter is upset because she loves school and has begged me to go back. I want to make sure this never happens again. Is there anything you can do for us? Or can you refer us to someone? How much would this cost us to fight?

Right now my little girl is being kicked out of school when her aide leaves for the day.

Thanks.

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.

Oh yeah!

They told me to give the school workers instructions on cast care since they won’t know what to do. Done.   It contains such gems as: “Toes should never be blue,” “Do not get wet,” and, “I went to Disneyland in full casts on 11/28/10.” My diagrams are terrible and include lifting and propping. Plus on the left leg are full diaper instructions. Now there are NO EXCUSES!

Let me explain.

So getting Laelia back to school has become difficult. The plan was to go back December 1st. But I also knew I was suppose to call both Laelia’s school PT and her immersion teacher the day before going back to make sure they would be there to help with the transition. We also had to give the bus a day’s notice. But Charley and I called November 30th a few times and couldn’t get in touch with the immersion teacher. (Turns out she had the flu and wasn’t there.) We decided (last second) to get a sitter for December 1st and hope the school didn’t call like crazy wondering where she was. So now her first day of school would be on the second of December instead of the first.

Laelia talked about school like it was Disneyland (which we did on Sunday). She was really looking forward to seeing “my Genny who is my friend” (who is an aide she adores) and all her friends whom she would list over and over by name. She also LOVES her teacher, Ms. Wilson, who is on par with Mickey himself.

Well when I got a hold of people on December 1st I started to get the run-around. First we needed a doctor’s note, one that we had never been told about, from the Philly doctor! They were firm on this point so I emailed the doctor who, little did they expect, is WONDERFUL and emailed back immediately! He said she was fine to go back to school, just no gym. (Ha ha.) Then when I said I got the note, it was no longer that important and now having an aide in the afternoons was a concern. Wait, why wasn’t it a concern for the last few months when we ALL knew she would be returning on this day (or now it was the next day) in full casts?

Ugh.

Then they were worried about her casts themselves. We would have to tell the teachers not to get them wet. (Let me just say I have full confidence in her teacher’s common sense. This was just one more thing.) Thus the full instructions written on them in the picture above.

Then they weren’t sure they could bus her and her wheelchair to school and probably couldn’t work it out before she’d be out of casts.

Then they called back and there were now “safety tests” she would have to pass that the principal came up with (out of the blue when everything else wasn’t keeping us away!) before Lali could come back to school. What tests? Whose tests? Who would judge them? What was going on?

So after multiple back and forth phone calls with different people, I began to suspect they didn’t want her back to school because of the liability.

Now this is where I get on my soap box, folks.

1. My daughter has contract hours.

2. My daughter has an IEP and this was talked about in the IEP well before she was enrolled.

3. My daughter will have, as part of her life, casts. Treatment for arthrogryposis is serial casting or post-surgical casting. This is her life. This is a direct result of her disability. Um, anyone heard of the Americans With Disabilities Act… *cough*

4. If I allow anyone to keep my daughter out of school or deny her the rights of her peers because I was not strong enough to fight when they tried to convince us not to bring her back or because they made it “too hard,” then I have failed my daughter! If she doesn’t go back to school in casts, then how can I keep her in school for the rest of her school career when casts are a part of her life?

5. This is wrong.

Okay I do understand the other point of view. This is hard on people. Lali requires someone to change her diaper. She requires help if her chair or gait trainer get stuck. But I cannot bend on this issue, because then I don’t have a leg to stand on when I ask she be back in school after her surgery next year and the year after and a few years after that!

Ooh I just hate being the bad guy! I hate being *that* mom. I hate when people don’t like me. I hate when I have to push to get my daughter what she needs.

I want to be a nice, soft-spoken person who sees this whole thing as a way to educate people about arthrogryposis. I hope this is a learning experience to those without much experience with disabilities.

I heard back from the immersion teacher right before my doctor’s appointment. (I have episodic vertigo.) Laelia is going back to school tomorrow, but we’re sending her daddy with her to show the staff how to lift her, etc. Another schedule change, sigh.

This has been such a hard week on us in general. Here is my week in picture form:

Can’t get new ones until January. So super glue to the rescue!

Five days of episodic vertigo. Had twenty-two attacks today before lunch. I’m always dizzy and nauseated, but it doesn’t keep me from going to work.

Self medicating.

Okay here are some cute pictures:

The stuffy council is now in session!

Daddy can never name all the Dr. Seuss “animals!”

Princess Laelia is ready for Disneyland!

The first 24 hours are the worst. If your child is getting this surgery and you can get through those hours, you will have gotten through the worst your child will ever go through. Surgery itself is cake compared to this.

She cried. And cried. She arched her back and grimaced. She would sweat profusely through her pillow case and sheets. She didn’t speak. She squeezed her eyes shut but couldn’t get respite through sleep. She cried. And moaned. And cried.

And we couldn’t do anything about it; just be there watching her in pain. And we couldn’t leave the room to use the bathroom without her startled cries and elevated heart rate (machine beeping at us) pulling us quickly back to her bedside. Sometimes she wanted me to hold her hand. Sometimes she hated to be touched. Sometimes she wanted a hand on her tummy. Sometimes she just wanted to scream in my face and look at me accusingly for not fixing her pain. 

Charley adds: “She was reduced from her super articulate three-year old self, to a tiny baby without the ability to communicate anything except need. She would cry something that sounded like, ‘I want I want I want I want…’ but without a way to finish that sentence. It was almost a full 24 hours before she learned, through the pain, to form a full sentence again. It was, ‘My legs hurt a lot.’”

I started to second guess my decision to have this surgery done. I kept thinking how much she has gone through, all to possibly one day stand or walk. This was too much; I was a terrible mom.

The incision site was above the cast line.

The casts were not a spica, but instead full leg casts connected by a bar. This is so she will have more mobility later, but for right now it’s just hard to move her. You cannot move the cast separately from the hip or twist her or lift one side or anything you need to do! It’s so hard, and I’m so intimidated to even touch her.

My husband broke down again somewhere in the first few hours. For some reason that made me stronger. Because if he was the strong one, then I would break down. I don’t know how any single parent goes through this.

Nurses, God bless them, were wonderful yet we wanted them to all go away. They had to check her vitals every 15 minutes. So every 15 minutes Laelia screamed her head off. But it was different than when she’s throwing a fit or when she’s got a boo-boo. She was downright scared. Her cries were desperate and hoarse as if she were being tortured. Laelia couldn’t stand having the blood pressure cuff on her arm. So I took it off. Then a nurse came in to put it back on, but not to take her blood pressure–just to leave it there. So I took it off. Laelia was scared of it and in a lot of pain so I asked it be kept off until they needed to use it. When I got the “it’s the hospital policy” line, I tried using her amyoplasia as an excuse. I said she was special and this hurt her. I lied through my teeth which is quite unlike me. (Also I forget that people have actually heard of her condition at this hospital.) The nurse wrapped it onto the bed rail and hit the top of it in frustration and left. She came back later with her superior who put it back on my daughter. I told them all that if they needed to take her blood pressure every 15 minutes they could darn well come in and do it themselves as opposed to leaving it on her arm to go off automatically and freak her out the whole time it was on. I was at my wit’s end and I made it clear that I would take it off as soon as they left the room anyway. I watched that cuff try to take the blood pressure of the bed rail more than once. It gave me a grim satisfaction.  

Lali refused to keep the oxygen in her nose, so the doctor put it on the top of her head unintentionally making those who tried to cuddle her light-headed. Despite being largely mute, she was very particular about her own care.

Laelia also sounded like she had a bad cold. She was congested due to some fluid in her lungs from intubation. And that meant she had to have breathing treatments done. Which she hated. A lot. And up until now things had been done to  her, so when she finally had the power over a part of her own care, she was darn well not going to participate. But when her breathing was affected by the junk in her chest we had to force the respiratory device into her mouth and tell her we wouldn’t take it out until she breathed into the device. It worked, but the last thing I wanted to do was force more hardship on this little soul.

The respiratory therapist gave Lali a gorgeous black-and-white stuffed tiger as a reward for doing her first treatment. Charley gave Mr. Tiger a voice from then on out, throughout our stay. Subsequent breathing treatments were done after a few bribes or threats of, God forbid, pausing one of her two billion viewings of Finding Nemo until she cooperated. (I’ve now seen that movie more than the animators themselves. But I’ve got to admit it was much preferred over half of what children’s programing had to offer. Dinosaur Train? Seriously?)

The next morning Laelia was still on IV meds, an epidural and a suppository. Finally she got some water and a couple bites of my breakfast pop tart (that she demanded) down so they switched her from the suppository to oral medication around lunch time. And Mama was the only one who could give it to her. So I had to squeeze her cheeks so hard it broke the capillaries in order to force one milliliter of medicine at a time through her teeth until she’d had five milliliters. During her second dose four hours later she choked and threw up all over me. Because the puke was on her IV, blankets and pillow case it meant that we had to move her to change those things out. And moving hurt her. She screamed in pain for half an hour straight after that. So finally after was seemed like hours, the doctor decided to up her epidural medication and add two somethings to her IV. About five minutes after that happened, she stopped crying and announced, “My lips are purple. And I am so very pretty.” And then she argued about the amount of strawberries the hospital had stocked. She was so very drunk off pain meds. But for the first time in too long we were able to just enjoy her.

Charley and I were so very tired. Every little stress seemed to be magnified. The cafeteria had hours they were open that never corresponded to hours we were available, we never had one dollar bills for the vending machines, my cell phone only held 50 texts (40 texts caused large delays receiving messages) which meant I was constantly deleting all of my important messages everyday to allow more to come through, the lack of sleep hurt us physically even with trips to RMD house, driving through the ghetto almost resulted in accidents or death of stupid pedestrians daily, and on top of these small issues, we felt personally responsible every time our daughter whimpered.

Many things are awful about surgery, but I think inability to sleep is the worst. Even when she was asleep she would cry. She would do a “crysleep” for ten minutes then wake up and cry out loud and then fall back to crysleep. The crysleep sounded like a snore only with her voice box making a high whine sound every time she exhaled while she grimaced. It was very disconcerting.

Even in a deeper sleep than crysleep her heart rate was 140! That’s the same as I have when jogging!

Sleeping was impossible with all the nurse interruptions, as unobtrusive as they tried to be. Even the guy who came in to empty the trash caused her fear and crying. We wished we could have had a heads up and just moved the darn trash can to outside the room before he came in!  Another doctor came in at one point to look for something he’d left in the room earlier causing panic. Someone came in to lay a tray of food down. (I wish they could dress up in a different costume so she’d know it was food coming and not someone coming to check her wounds. Maybe if they dressed up like giant chickens? Shriners you can use that one. ) One nurse, Wanda, came in often to add meds to her IV or switch out the bag. Laelia screamed every time until I told her that Wanda was coming to “play with her machine” and she wouldn’t be touching Lali at all. That line worked better than, “She’s coming to add medicine to your IV.” Laelia finally was quiet every time Wanda came in after that.

There were moments of less pain. Not really pain-free moments, but starting Wednesday afternoon we had times when we could talk to her and she would talk back. We were encouraged by the pain management brochure we were given to talk with her about happy memories and future trips. So of course we talked about Disneyland. We sang the songs to her favorite rides like It’s a Small World and the couple of songs we knew from the Tiki Room.

We also read her lots of books. I was getting encouraged when she could sit through a whole book even if she was crying the whole time. She wanted me to read to her, and would grab my hand if I took the book away thinking she was in too much pain. She would moan while I read, but I went through the fifteen books of hers we brought with us over and over again.

The second night was also hard. We decided to send me (Alexis) to the RMD house to sleep through my worry for a few hours, then I would come back and switch off with Charley. I broke down in the elevator before reaching my room. And while I was telling myself she was fine, she wasn’t. Charley was with her the second night, so I’ll let him tell this story:

“The second night Laelia was given Valium to prevent muscle spasms. It was supposed to be the first of several regular doses, but she started reacting to it almost immediately. She wanted her blanket off, which I accommodated; then she wanted her gown off, which I helped her unsnap and remove. Then she just started clawing at her IV and the sensors on her chest and finger. She wanted them off, she wanted everything off, and she wanted to get out of there. I called the nurse and doctor in, and they confirmed that Valium could cause this kind of disorientation. The nurse helped me get her into my lap–it was the first time either of us had held her since the surgery–and after about 30 minutes of singing and talking about Disneyland rides, she calmed down. Then the nurse gave Laelie her first dose of Tylenol with Codeine, which helped knock her out and give her 3-4 hours of continuous sleep. During her whole stay in the hospital, it was the most sleep she ever got at one time.”

So I came back from the Ronald McDonald house Thursday morning to find out that my daughter had a Valium trip that make her want to take off her own skin while my husband held her and cried into her hair. Laelia looked miserable and so did Charley so I kicked Charley off to the house to sleep off his trauma while I took the next shift. He had to leave through Laelia’s painful cries which was hard. But she settled down after a bit. 

During this time I got a text from Ryan’s mom. (Back story: This is the family we went to Seattle Children’s hospital with to get our amyoplasia diagnosis. The same place that gave us no orthopedic hope for my daughter. Which directly led to our AMC support group contradicting them and sharing about Shriners in Philly which ultimately lead to this very treatment course we are pursuing.) Ryan was scheduled to have the exact same surgery that Lali just had that morning. (They worked it out so we could have the same surgery week together.) Well Ryan had just flown all the way to Philly from California with both parents in tow only to find out that his surgery was cancelled due to slight congestion. Which sucked.

By Thursday afternoon before 2:00pm Laelia’s epidural and catheter were removed (not as traumatic as I would have expected, just a quick pull for both) and we were allowed to go back to our neglected fifth floor room. More magical medicine was given to Laelia so she slept the whole way there even when her bed got bumped pretty hard into the door. That evening after two more viewings of Finding Nemo it was becoming obvious that Laelia was in more discomfort than usual without the epidural helping. The nurse brought some Tylenol with Codeine and I forced it once again down my daughter’s throat through her teeth. It took about twenty minutes to kick in. Once it started working, it worked well. There was no doubt when it kicked in.

Laelia was doing better, inviting all the nurses to Disneyland with her when we got home and generally saying demanding things like, “I wanna go to Disneyland now! DADDY DON’T LAUGH!” But I was sure there was no way we were making our flight the next day. She still had such a long recovery ahead of her. It still hurt to touch or move her. And she hadn’t pooped in a week! Tomorrow I had to figure out where we would stay, how to change our flights and how to avoid blowing our trip budget to smithereens.

Needless to say I was shocked in the morning when our doctor came in and we were discharged that afternoon! (More to come in the next blog, Love is Kind.)

It reads: “Hi! My name is Laelia! ‘LAY-Lee-Uh’ I have a disability called arthrogryposis. It means my joints are stuck. I also don’t have the muscle to walk or lift my arms. But I’m smart! So please include me in conversations!”

Having Laelia hand these to people has been so great!  It provides an instant explanation of her disabilities without me having to explain to yet another person about arthrogryposis, but it also opens up an instant, informed dialog. It has helped people who have never dealt with disabilities avoid saying things like, “What happened to your daughter?” or “Why can’t the little girl lift her arms?” that us moms HATE responding to constantly. (The zoo and grocery store hold the biggest offenders!) It also clearly states that I want my daughter included in conversations. A lot of people ask me “harmless” things in front of Laelia about Laelia. But not after they read the card!

Another mom (the one who started the AMC support group) told me that business cards would smooth over first time meetings with people. I thought it was a cute idea, but I never thought I’d go through so many of these things! I had 250 cards made for free online (cost me $5.99 for shipping) and already I have handed them to strangers, gym childcare staff, people who work within special needs communities but have never heard of arthrogryposis, and in November I’m handing them to airline employees! 

Actually the business card suggestion was made after I shared our not-so-great experience with a flight attendant during our first trip to Shriners to get Laelia evaluated for surgery. This head flight attendant with Continental, Cindy, demanded that my daughter stand instead of sit while waiting for the bathroom at the rear of the plane. At first I geared up for a teaching moment (which happens way more often than I would like in the real world), but she got so mean so quickly (telling me that allowing my daughter to sit on the dirty floor was awful, and otherwise demeaning my parenting) that I was choked up with tears before I could blurt out the painful truth of our situation. I tried to tell her that this was how Lali “stands” because she’s different, but before I got the full sentence out I was shot a look that was incredulous and outright mocking, then I was bluntly ordered to pick up my child NOW. And that was when Laelia began to cry. I overheard that awful woman talking about us as we were back in our seats (a mere few rows from the back, row 34 of 37). Her fellow employee had to explain to her why the little girl didn’t stand.  The woman became even more incredulous and said we should have sat in a different seat then.

When I’m emotional (angry, sad, hurting etc.) I can’t educate. When I can’t educate then hard-headed people can take advantage of us, and hurt my daughter’s feelings.

So this card was made with Cindy in mind. But thankfully it’s been used effectively to avoid Cindy-type situations.

Last week we went to Tim (my cousin) and Nicole’s wedding and had a great time! It was beautiful and so much fun! Plus a wonderful chance to catch up with my family. Below is another blog with pictures from that event. But this post is about something else: our flight home. We had a terrible time on our flight home. Well there was one bright moment–it felt like a scene from a movie when at least 60 people (okay, well, two people and their large groups of students and parents) helped Laelia and I get home! In fact, we wouldn’t have been able to go home if not for those strangers! I was so grateful! I’ll copy and paste parts of a letter I sent to Southwest this morning so you know a tiny bit of what happened:

“We arrived 45 minutes before our flight was to leave. [...] I saw the line to check in was very long so I asked an employee in a Southwest uniform near the front of the line what could be done about my late arrival. [...] She informed me that there was nothing to be done and I would miss my flight and end up on stand-by. I then asked for a wheelchair for my daughter who has arthrogryposis affecting her arms and legs. She pointed across the room to the far side where I then, unassisted, dragged my bag, a car seat, my suitcase and my daughter to put her in the chair.   

When I arrived back at the end of the line behind a large school group, one of the parents of that group had noticed our dilemma. She then took my bag for me and gave me her place in line. Another man in the group asked his kids to let me by. I did not initiate this charity, but appreciated it a lot. Getting permission from people in the line, I was cheered on and escorted to the front.  

The aforementioned Southwest employee then became confrontational and rude. She demanded the ticket of the lady helping me and ordered us to the back of the line. She then said that the 9/11 terrorists had cut in line and that this rule was enforced because of terrorist activity! At the mention of terrorist activity, I felt very ostracized and feared repercussions. Other people in the line behind us started to defend us and tried to explain that we had not cut in line. The Southwest employee became agitated and argumentative with them until a supervisor behind the kiosk spoke to her and graciously offered to take us.”

Yeah it was a bad experience. But the drama continued when we got off the plane. Here’s more from the later part of the letter:

“I asked if a wheelchair would be available upon exiting the plane and she said it would be. So upon our exit from the plane we saw that same type of wheelchair waiting for us and I assumed it was ours. I put our car seat in the chair and while I was strapping my daughter into it, I overheard from behind me a female Southwest employee talking to a male Southwest employee (yet directed at me) to put another passenger into “that” wheelchair (referring to mine). Of the four Southwest employees in that crowded space right outside the plane, no one made eye contact with me or asked me to relinquish the wheelchair, but they all spoke loudly in my direction while pointing at me. This was very unprofessional. One Southwest employee, the man who had been ordered to take my chair, stood uncomfortably close to my daughter’s wheelchair while I was strapping her in. I asked him at that point if they needed this wheelchair for another passenger, and if he could then bring us another one. He replied sarcastically, “You mean a stroller? You need a wheelchair or a stroller?”  

My daughter was clearly in braces and could not move her arms or legs, plus I had her disabled parking placard on hand so I was able to “prove” she was disabled and needed the chair. He didn’t respond to me, but spoke to the female Southwest employee who had ordered the wheelchair be removed from me who then got into a bickering match about canceling the other wheelchair with another female employee who responded with, “You don’t have to talk to me that way.” Then the first female employee stormed off! So I asked the remaining Southwest employees if I could please leave now and was given permission.

My past experiences with Southwest staff have been positive. Employees, on the aircraft anyway, have always been courteous and usually humorous too. I would like assurances that my experience on June 13^th will not reoccur. I feel that Southwest violated the anti-discrimination aspect of the Americans with Disabilities Act by assuming my daughter was not deserving of the equipment she needed. Because of this I would like a copy of your policy on dealing with handicapped passengers. And I want to know in writing what training your personnel receive in handling passengers with special needs. I look forward to your reply. ” 

I then signed my name and hope to hear from them. Yeah I really shouldn’t have to prove my daughter is “disabled enough” to deserve a wheelchair. Sheesh. I felt like a rock star for remaining so nice. Gave myself a little reward too. When I got home I had fudge ice cream for dinner while watching Daria on DVD while crying my eyes out while getting my feet rubbed by my husband. Ah the girl life.

(Since this got long, I went ahead and put all the pertinent information in bold so you less-hardcore Lali fans could skim through this much easier.)

I don’t really know where to begin. We got back last night from our Washington trip with Kiersten and Ryan to Seattle Children’s Hospital. We haven’t seen Ryan since he was itty bitty, so it was really neat to see him and Lali be bad influences on each other. You know those seagulls from Finding Nemo who say, “Mine mine mine!” Well these two do that way better… constantly!

From the very first, they were being little monkeys in the back seat. It’s so neat to see them play little copy cat games together. Usually little kids leave Lali behind with copy cat games since she can’t lift her arms, but Ryan and Lali can do the same things. And they are so goofy! And this is another picture of them playing together throwing blocks off the bed while saying “Hi-ya!”.

And here’s another picture of dinner that first night after long plane rides.

Hehe. Aren’t they precious? Seattle has some GREAT restaurants and I admit it’s been hard to going back to eating like a real person again. And on that happy note, I guess I’ll start with the good stuff.

~

Dr. Hall

We met with Dr. Hall and (drum roll) Laelia clearly has amyoplasia. I even got to brown nose a bit and mentioned all the side effects of amyoplasia that I’d read about in Dr. Hall’s book that Laelia clearly has (her hair whorl and underdeveloped labia). Then she showed me some things I’d missed from Laelia’s newborn pictures (a bone protrusion in her forehead hidden under her bright stork bite, and her face was asymmetrical for a while after birth). So even though getting that diagnosis should be devastating, in our case it was just confirming what we already knew.  The whole exam took around 40 minutes. Dr. Hall studied pictures of Laelia, then looked her over and also got her genetic history–it was funny when I was giving her my family history because she got every family connection, she even corrected me once when I got confused in my notes. She had practically summed up by whole large, crazy family tree using a single sheet of white paper. Hmmm, I think someone should be a geneticist when she grows up.

As far as myself or ANYONE in my gene pool (hello family!) having another kid with this condition, the odds are 10,000 to 1!!! This means that in the future I’m as guaranteed to have a normal, healthy pregnancy as the next normal, healthy person. The odds of me having two kids with this would be like winning the lottery twice with the same numbers. In fact Dr. Hall (who was completely personable) seemed to be encouraging it:”These kids do well with siblings!” “I’ve overseen over 2000 families with amyoplasia have other unaffected kids!” “You are clear to get pregnant.” So okay then. Um, not so fast now. Hey! :)

Then she said seriously, “You need to tell your family that this wasn’t your fault. This has no known cause. You didn’t do anything wrong. And you can tell them that the expert said so.”  So since I said I’d put that out there, there it is. But don’t worry, family, I defended your awesomeness.  I guess lots of her patients have had families or friends who were too embarrassed to ask the mom if she did something. And really I have felt guilty and wondered if something I did caused this. I got to run several things by Dr. Hall that I thought were awful and could have caused it: I didn’t always take my vitamins because I was sick, I never exercised, I had three drinks before I knew I was pregnant although it was on three different days and I was never drunk… oh and I drove over bad, bumpy roads to get home! Surely one of those things caused this? Nope.  All my parts work and should have produced a typical baby girl, but instead I got an extraordinary baby girl.  

A small percentage of amyoplasia cases show evidence of a vascular accident (something that was mentioned the day after Lali was born), but Laelia doesn’t show any evidence of that. (That would be like the tip of a finger being dead.) It can’t be a virus because they’ve seen it in one twin and not the other. The only other thing they think causes it is somehow the anterior horn cells (for muscle) never develop. No reason why. When the researcher, who was sitting quietly in the background, mentioned that they were still trying to figure out what caused this, Dr. Hall said, “And you won’t find it!”  Then they grinned at each other. (A bet maybe?) But there you have it. Totally random!

The only bad thing from Dr. Hall’s visit was that she let me know that Laelia would get arthritis in her 20s. I knew arthritis was in her future, but was not aware it was this early. I know people with arthritis, and I’m sad she’ll have to suffer with it for so long.

~

Children’s Hospital

It’s an amazing place. It’s set up like a giant aquarium. There are fish everywhere and Laelia LOVES fish! And since Kiersten brought Finding Nemo for the kids, Lali could point out all the “Nemos” in the tanks the next day.

I decided to buy Laelia an Elmo balloon after she grabbed a tiny Elmo doll from a low table display in the gift shop and it turned out to be $16.95. (No, it was not made of gold. Nice guess.) So $3 Elmo balloon it was! She carried that thing to all appointments and it was a general bother. Both her and Ryan yelled “Elmo Elmo Elmo!” whenever it was near.

Our experience in this amazing place was really great, but it’s about to get not so great.

~

PT

After a get-together with a few other parents there, I got an escort to our next appointment by a person who turned out to be an OT! And since we had not been able to afford seeing an OT, and I mentioned we didn’t have an appointment with one, she agreed to do a little impromptu visit with Lali right then and there. She mostly just praised the OT I have now and did a little exam. But she was very positive and I appreciated that. Then came time for our meeting with the PT. That wasn’t as positive. Our PT was very nice, but kinda negative. Instead of saying, “Good job Lali!” when she tried to kick using a muscle she didn’t have, the PT instead said, “So she can’t really do that.” And one time she was holding a ball out for Lali and trying to get her to do something with her leg, so of course Lali reaches out for the ball instead of kicking with her leg and the PT seemed frustrated and grabbed the ball away. She also seemed tired. Oh and I brought with me a list of questions to ask her that my PT back home had written out for this very reason, but she only wrote down the questions into her notebook and she never answered any of those questions! Is she going to write out her answers? And when? And who will she send the answers to? She said she needed a consult first. So… Anyway, this is all looking back on things, because she was perfectly nice, but I have one more gripe. At one point she noticed how Lali said, “help please” when she couldn’t do something and I mentioned that she says that a lot when she wants help. She then said that Lali was giving up too easily and that “personality determines ability”. What’s that suppose to mean?!

We did get some good ideas after PT. We’re going to get Lali used to the scary water (aka real baths) to prepare her for some possible pool therapy. We’re also going to get a 30 degree wedge to help her sit up herself. And we’re also going to try to get knee immobilizers. So that’s good.

Kiersten and Ryan had an appointment with the same PT the next day, but instead they got another one last minute. When Kiersten mentioned how Ryan had done well on his knees (and Lali too after hearing about Ryan’s progress), the PT asked where she’d learned to start knee weight bearing. Kiersten mentioned the AMC Atlas (arthrogryposis book that Dr. Hall edited) and that PT said, “Oh I wrote that article!” Kiersten took a video of all this so I could reap the benefit of her PT appointment. I kept thinking, “Why couldn’t we have gotten that PT?!”

~

Dr. Song

Dr. Song is a bone doctor/surgeon. After looking Lali over he was very optimistic and mentioned doing surgery to her knees to release them and internally rotate them and leave the hips externally rotated to help her stand. I was getting hopeful that there was something else to try, and scared that we were looking for a completely new surgery coming up very soon. He also mentioned knee casting to try to straighten them first. I was ready to do something since stretching hasn’t been gaining range of motion in her lower extremities. In my mind if the casting worked and the surgery moved her in the right position so she could stand (since she can’t physically stand now), then maybe with leg braces and a walker she may be able to get around the house and achieve independence! Actually looking back I was getting a lot of hopes up. Dr. Song then decided to take a break from our appointment to confer with the PT that Laelia had just seen.

He went out to talk with her. When he came back his countenance had changed. His optimism seemed more guarded, his words more politically correct. He said she wasn’t a great candidate for this surgery, and to wait six months to a year to see if we should do anything with her. He then brought up that kids with her personality (asking for help, or giving up easily as the PT had mentioned) didn’t do as well as other kids with go-get-’em attitudes. He said that 90% of kids with amyoplasia were ambulatory (able to transfer and stand), but it wasn’t looking like Laelia was going to be one of those kids.

When he left the room I asked the blond who stayed behind, “It’s not just me, right? He did start out very optimistic about all this surgery stuff and then came back from a meeting with a PT we had seen one time and is now pessimistic.” She responded in between niceties, “He wasn’t that optimistic in the beginning.”  Okay that was NOT my impression. She then printed me out a Return to Clinic paper to schedule a follow up (in that six months to a year we’re ignoring her), and I instead used the paper to write out my feelings. I was emotional and in tears, and these feeling are few and far between nowadays, but I have learned that it’s important to work through them. And even though my rational self disregards these feelings now, they were nevertheless honest (if a little disjointed), and I think a lot of parents in my position might feel the same way so I’m sharing them here. So these are my notes scribbled on the back of a paper minutes after leaving my appointment:

“10% of amyoplasia cases aren’t ambulatory at all and Laelia is one of those cases? I’m feeling depressed. I look over and Laelia is happily looking at some fish. If only she knew what he said in there about her future.

Sometimes when she’s bratty I worry that she shouldn’t be because she has to be “pretty on the inside” to make up for this.

I’m having wrong feelings about somehow having more kids to make up for this. I’m having feelings of failure–maybe because I’ve put more energy, patience and work into this one project (raising, caring for Laelia) than anything in my entire life. In fact I get how parents would not feel worth living if their child died. It’s not all about how much you love them–it’s also about how much of your own life you put into them.

I see kids who are worse off than Lali–I think there’s another clinic going on because I’ve seen lots of kids with breathing and feeding tubes–and that makes me feel better. Wow. That’s sick. And I wonder what it is about me that has to compare my child’s (and my own) worth to other people. But this lets me down when I leave the clinic area since out in the real world away from Children’s Hospital most kids are better off than mine. Most. And it’s taken for granted.

This sucks that my faith isn’t stronger. Right now I’d love the reassurance that God has a plan for my daughter and she’ll have a new body one day in Heaven. Something is keeping me from doing that. It feels like false hope.

Her lack of trying… does she get that from me? I didn’t really try at anything long term until I was in college.

I saw the PT’s back as she walked through the hall after my appointment with Dr. Song. And I felt the urge to run after her and ask “Really?” Or ask why. Like my kid was applying for a job and didn’t do well on the interview. I wanted to fix it. “

That’s all I wrote before I started to feel better and didn’t need to journal it anymore. I wiped my tears away and took my daughter on a well-deserved trip around the fish tanks that she’d been begging for. Seattle Children’s even let me borrow a bright yellow taxi car for her to “drive” around while I pushed.

~

Sleep

My Laelia is allergic to sleep sometimes and I didn’t get more than a few hours of sleep that first night.  She cried for a while before going to sleep. Then she woke up in the middle of the night screaming. I tried moving her entire hotel-borrowed crib into the small bathroom at one point just to let other people in the room sleep. It didn’t fit. At one point someone started banging on the wall. It was probably directed at us. Then finally Lali was so wide awake that we both played quiet games in my bed. I tried really hard for those not to be singing games, but she does those best of all so unfortunately she would belt out a tune and I would cringe and see if she’d woken up the other baby. Then she would look AT ME and say, “Shhh Mama. Baby sleeping!” !!! She fell asleep at 5:33 AM. The hotel alarm clock that no one set went off about an hour later. At first since it was playing music I thought it was Kiersten’s cell phone and wondered why she wasn’t turning it off. Then I realized that it was the alarm clock on my side of the bed, and it was too complicated to turn off. Even though I found my glasses in the darkness and hit every button on that thing I didn’t do it right apparently because it went off again nine minutes later! I couldn’t unplug it because the cord was behind the big immovable bed. So I was a bit tired for all our first appointments. Thankfully Kiersten woke us up an hour before our Dr. Hall appointment (because among other things that stupid alarm had the wrong stinkin’ time!) and we only ended up being 15 minutes late after check in.

But the second and third nights were absolutely wonderful.  We had a plan, Lali and I, for her to try to sleep in her crib, but if she woke up in the middle of the night then I would put her in bed with me. So she would go to bed around 10:30 PM and then wake up at 3:30 AM crying. I would grab her and put her in bed with me and instead of playing games she would cuddle up and go right back to sleep! She had not slept with me since she was six months old! If I had known that would work I would have done it in the first place! I used to get her when she’d wake up at night and she NEVER could sleep with me around. I tried not to take it personally. But this time Lali snuggled up under my chin, pushing all that crazy hair in my face, and slept like an angel. I fell in love all over again! She’s so precious when she’s asleep. She even does that high pitched sigh in her sleep like I did when I was younger. Besides being a total bed hog, she’s just a dream! And we got a bit more sleep that way.

~

Dr. Hanel

The next day (Thursday) we had an appointment with Dr. Hanel, the upper extremity doctor. It reminded me of my visit with Dr. Hall–it was a joy! Dr. Hanel took to Lali right away. He checked out her arms and shoulders and then said, “Can I tell you something, Laelia?” She looked in his eyes and nodded her head. And he said, “Don’t you let them ever operate on you pretty girl!” And she said, “Yeah!”  Then he looked at me and told me not to do any surgeries on her upper body. No releases and no muscle transfers; she doesn’t need the release because of her elbow range, and she’s not a good candidate for the transfer. Muscle transfers were one hope of getting her to maybe lift her own arms one day, but after hearing the down sides, I’m almost convinced it’s not worth the gamble. Especially not with her weak muscles, and the fact that we’re borrowing from Peter to pay Paul (in this case her back or peck muscle that she needs). But we’ll do more research and come back to discuss it in five years or so. Then Dr. Hanel gave me advice on parenting and teaching Lali words because she was going to be the smartest and prettiest baby in the world. Yep, this was much better than some of my other appointments.

~

Fun

We went to the Space Needle Thursday night for dinner. Lali passed me her french fries by putting them on my plate and then I’d share my pasta and we’d wink at each other. The view was amazing! And I think the waitress would have taken Ryan home with her. It was a fun trip. The next day we went to the Children’s Museum for ages 0-3 and played until it was time to fly home. It was a great trip and I had lots of fun with Kiersten (aka “Gigi”) and Ryan. I have some great memories of little kids chasing each other around, great food (sometimes too spicy for wimpy me) and one very funny run-in with Kiersten at 3:00 AM.

Oh and we ended our trip just like we started it: being harassed by the TSA over Laelia’s orthotics. We got a sticker out of it. It says, “I was detained for questioning by the TSA for looking suspicious!” No, it doesn’t say that. I asked. They don’t have a sticker like that. But, no, really they were very nice to the baby girl because she demands it with her sweet nature. She held out her shoes for them to wipe. They also needed her to turn her palms up, and after I explained that she couldn’t do that (she’s missing the muscles) she announced cheerfully, “I do it!” and held her hands up as far as they’d go which worked just as well to wipe the undersides. Nothing this little girl can’t do! 

Honorary TSA

And a special thanks to my husband who posted my April Fools joke while we were away. Love you!

I don’t know whether or not to post this under the category of “angry” or “humor,” since it’s so infuriatingly silly it could be either.

(And I’m not quoting anyone word for word, but here’s the story recap.)

I needed Laelia’s PT, OT, Biopsy, Surgery, Newborn, Orthopedic and all her other records to go to Seattle Children’s Hospital for the Arthrogryposis Clinic.  No problem.  So I requested them on January 26th.

25 cents a page?! Fine.

Wait. Wait. Wait. Nothing.

I call my contact at Seattle Children’s. “When are your records coming?” She asks innocently. “I have to get these to the doctors ASAP!”

Blarg.

Our pediatrician is awesome, so one quick call to his office and Lety is rushing out the records that day. Yay!  The hospital records, on the other hand, were a whole other story.

Last month I called Rady Children’s Hospital’s customer service and got all the information (or so I thought) on requesting forms. They sent me to their website where I printed out the correct form, took it to Children’s Hospital personally, watched the lady scan it into their system, called to make sure it was being processed, and then forgot about it entirely, thinking it was being handled.  Nope.  Had my husband call them. They start out, “We didn’t get your form.”

“But it was scanned into the system last month.”
“There’s no record of that. You need to fill out the form and wait five to seven business days.”

So my smart husband waits through a ridiculous phone tree in order to call the lady who originally scanned it into the system (because we knew her name), and she verifies that it’s in there. He calls the Historical Records people back.

“Spoke to Maria and she sees our request in the system on this day.”
“Hold please.” (A looooooooooong time later, like over twenty minutes of total phone time.) “Okay we have it. But we can’t fax records this long.”
“Were you going to call us and let us know that?”
“We didn’t receive your records.”
“You obviously did.”

Oh no, nah ah. Tag. Mama Bear’s turn.

“Listen what is your normal processing time for a request for records?”
“Five to seven days.”
“So when something is sent to you on January 26th, and, say, it doesn’t take five to seven days, what happens then?”
“Um…”
“And even though it says NOWHERE on your website or on the form that records this big can’t get faxed, how or when do you let us know that?”
“Um… you’ll have to talk to Lisa.”
“Oh I didn’t realize I was speaking to someone who couldn’t help me.”
My foot: tap tap tap tap tap…
Lisa: “Well I can’t do anything until you fill out this whole other form anyway.”

!!!

She faxes form. I fill it out and fax it back. I hear nothing. I call back.

“I’m off work in an hour, I’ll come pick them up personally.”
“Oh no, you have to wait five to seven business days.”
“Oh, I already have. Now I want them in my hand.”
“Um, let me ask the lady who prints them out…”

(So if you didn’t catch that, the person I was speaking to before AND the person I’m speaking to now can’t help me.)

“Who? What’s her name?”
“The gal who does the printing? Oh she’s the (long title) person.” (Who apparently doesn’t own a name, poor child.)  “Oh and she says we can’t do a print job the same day of the request… so…”
“So…?”
“Um, we just can’t.”

Fine. So I got them the next day. Oh and that’s a fun story too. Had Lali with me, straight out of PT, and only when I showed up did I realize that the Historical Records people occupied one room in the surgery recovery building. We walked right past both of Laelia’s post-op rooms from previous overnight visits. Lali starts to squirm and cry in my arms saying, “No no no no…” I see the panic in her eyes and realize she associates this place with surgery.  I promise in a soothing voice over and over, “No surgery. Just a quick trip. No surgery, I promise.” We finally get to the door to pick up the records, and I have to request they be put in a big envelope or package and not just in a loose stack. Oh and are they heavy! Want a workout? Try juggling a two-year old, a diaper bag and a stack of arthrogryposis medical records!

After a semi-polite receptionist (who I swear rolled her eyes at me when I tried to explain why my daughter was upset), an hour in traffic and one quick breather later, I was flipping through the records and discovered 15 of my official records were blank pages, and about 20 other pages just had one or two lines on them–all of which I got charged 25 cents for! Grrrrr…

Long story short: We have achieved record-dom! (Yay!) …and only at the cost of my sanity and patience.

One sick baby puking up everything.

So her parents give her lots of love and care…

…and now we’re all sick.

Lali woke up from her Wednesday afternoon nap surrounded in puke. I put her in the bath where she puked three more times. By the time Charley got home she had puked 24 times. Around 11:00 PM I started feeling sick. By 2:00 AM I had puked 34 times. (Why I kept count I have no idea. I kept thinking a doctor would want to know this stuff.) The next afternoon Charley was puking… like twice. Punk. This thing hit fast and hard. We couldn’t even keep down water so we all lost weight. (Which was only a good thing for one of us: Mama!)

As of Friday night Lali is doing much better. She kept down two bites of banana, half a piece of toast and a bit of yogurt. Charley is eating again (his stomach stuff didn’t last as long, he even ate some nachos), and I am doing much better, but I’m still really nauseated and can’t really eat or stand up for very long.

This has not been fun. Wednesday night after Lali went to bed before I was even feeling the slightest bit sick I started a blog on how Charley and I were feeling this weird sense of normalcy at dealing with a sickness that you can easily Google and get parental advice on. There’s not a lot of parents who can instantly come up with comforting tips for post-surgery recovery, but lots of my friends and family had great stomach flu advice. And it worked really well!

So we were thinking about how normal it all felt. And how it was almost comforting to feel like we were dealing with “normal” parenting stuff. Then karma decided that we weren’t empathetic enough apparently! :-/

And if I may vent a little: STUPID ARTHROGRYPOSIS!!! Because of Lali’s arthrogryposis and the fact that she was really too sick to do stretches the last few days, she can no longer reach her mouth when eating things! She’s really stiff! It’s really not fair! She was on her back and I handed her a cracker and as best she could she couldn’t get it in her mouth without me hovering over her and pushing her arm down. (Because of the contractures in her elbows.) Stupid joint contractures!!! Hate them hate them hate them! So way to go AMC, for making this one “normal” experience instantly “special.” Boo!

But all in all we’re all doing much better. No more grabbing our stomachs and wanting to die. And Charley’s comments on my messy hair are becoming more bearable. (I had some puke in my hair for over 24 hours and didn’t notice.)

Oh and Lali learned to play Mario Brothers on the DS during this whole thing. It’s really cute. And she can say, “Baby sick,” which is heart-breaking.

We are so lucky/blessed/ecstatic that Lali is such a good little girl. She didn’t scream through this whole sickness even though it was miserable for her. She was very patient with two sick parents caring for her. She only fussed when absolutely necessary, and only cried before puking. If she had screamed or thrown fits this whole time, it just would have been so much worse. She really is the greatest little thing. Thank you, Lord God, for my great baby girl!