Archive for the 'sick' Category

Casts almost off!

Wednesday, January 5th, 2011

Once again we fly from California to Philadelphia because what’s a rare disability without a three thousand mile commute for treatment? :-D

This afternoon, during the automated call to confirm my Friday appointments at Shriners, I both dropped my phone and fell out of my chair… at work…  in front of my boss.  :) It’s my own fault for  stayed up late last night to drive out to Santa Ana and have some fun with friends (who are moving to the Congo… yeah you read that right). So  I’ve suffered from sleep-deprivation-induced  delirium all day today. That might affect my blogging a little. Or not. I dunno.

Weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!

Right now I’m still packing. I have everything in front of me but it doesn’t all fit in my back pack like it should. I didn’t count on the weather meaning I had to take bigger clothes. I would have been done by now but I had to go to the gym tonight after my daughter, and I’m quoting her here, says, “Mommy do you have a baby  in your tummy or is it just big?”   :-/

All that to say… I’m still packing. I’m sure I’ll be done before we take off for the airport at 4:30am tomorrow. :)  So it’s all good!

Well it would be all good if not for this cold I feel coming in my throat. Also my vertigo was really bad today. It was probably just the lack of sleep though. Also I have stomach cramps. (Ladies, you know.) So everyone feel really sorry for the rude flight attendants who enter my war path this weekend.

Speaking of flight attendants, I was out of my “Hi! My name is Laelia!” cards that I pass out to flight attendants so I don’t have to explain  over and over again  about  Lali’s condition. Flying  so much for  medical treatment has taught me that if I don’t pass them out it means trouble. For example: When the head flight attendant demanded my daughter stand up because it was “a policy” while waiting for the bathroom. Example: The flight attendants who said my daughter wasn’t really disabled and implied I was somehow abusing her. Example: The flight attendant who held us up to check out our car seat and rudely said (as I waited and held my heavy daughter) that I should just put her down and let the poor child walk a bit instead of always carrying her. Example: The flight attendant who didn’t give me a straw (stir stick) because, “She can just use her hands.” Example: The flight attendant who said my daughter was “dirty” because she was scooting on her bottom instead of walking. Example: The flight attendant who could not or would not provide a wheelchair when we got off the plane because “you don’t get one just because you have a small child.” Example: The flight attendant who took our wheelchair from us and scolded, “This isn’t a stroller.” Example… you know what, I really need to keep packing so I’ll make this short. :)

So I didn’t have any darn cards left. We’re thinking they got thrown away accidentally during one of my infamous purges.  I even  tore apart my apartment looking for them. I ended up finding instead a doll’s head, a banana my husband was hiding from me (caught!), my UNO deck and a pair of pants I thought I’d lost, but no cards. So tonight I ordered new ones (that will come in two weeks). Then Lauren found out about  this and made me some on her computer and emailed them to Chelsea who ran to work tonight to print them out for me (since I don’t have a working printer) and then delivered them an hour ago! Yay! I’ll pass them out to every flight attendant on all five planes!

Ugh five planes. Three lay overs. Calculating…  that’s like forty-eight hundred  flight attendants! Ugggggggggggggggggggggh.

On the plus side I get a massage on January 15th as my reward  if I make it back from Philly in one piece and with the same small  child that I left with, minus casts. :)

Once again I’ll figure out where we’re staying (the day of) during our 55 minute lay over in Denver. I printed out directions to and from three different possible places: two Ronald McDonald houses and one hotel. So we’ll see. I’m hoping for the RMDH on Erie  that’s closest to the hospital. I don’t want to drive too much  in bad weather if I can help it.

It’s suppose to snow on Friday and be 20 degrees or so last I checked. I borrowed a jacket from Chie because I don’t own one and Chie’s family lives  back East and she’d heard of this thing called  “cold.”   I’ve got my one and only scarf Chelsea made me for Christmas and some gloves I got on sale from Target. I’ve also brought a blanket to wrap Laelia in. I think we’ll make it. I’m just so intimidated by snow! More so than traveling across the country!

But nothing can get me less excited about this visit. While we’re at Shriners we’ve got a lot to do: Updating our new  insurance information  with the  office, showing off standing (!!!)  for Dr. van Bosse, casts removal, car  seat swap (they’ve been holding ours since November), KAFOS or braces fitting, wheelchair returned (followed by begging and pleading to hang onto it), Laelia will  get her  first full  bath in six weeks, we’ll be  meeting up with other AMC families (who I’ve been  stalking on Facebook) and also  we  *may* even schedule Lali’s  next surgery for the Fall!

I just don’t know what I’d do without “AMC Mecca” and the amazing progress Laelia is making because of the experts there. Arthrogryposis has met its match! :)

School Won’t Take Her But Mickey Will?

Thursday, December 2nd, 2010

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.

Thankful

Wednesday, November 24th, 2010

This is  Scarman. We took him  to Philly and added Laelia’s scars from our last   three major surgeries to Ward’s existing ones. We even added little marks on the back of its feet  for the  tenotomies Lali got when she  was a few months old. Many people have scars, but  Lali knows her  scars are  special because they don’t just point back to a tragedy, but they point forward to hope.

I’m so thankful I have a  conversational little girl who can speak her heart! After an hour and a half talk with her  past her bedtime, I asked if I could write down what she said as we talked. She agreed. (And then begged for her own paper and pen. :))   I wanted to share a perspective of this last week that is so foreign from what I went through that it seems alien. I wanted to share her thoughts on her surgery and her insights. She has an excellent vocabulary for someone her age and a surprising  outlook bordering on the  inspirational.

A few days ago, Saturday I think, I asked her, “Laelia, how did your surgery make you feel?” This face (see below) was her response. I asked her if I could take a picture of her pouty face and she grinned and said, “Yeah!” then went back to  a  pout face. :)

Obviously her surgery was not a pleasant ordeal. After doing some research and getting some insights from different people and their experiences with their kids (or their own experiences), we’re now fairly certain that  Laelia’s epidural didn’t work.

… yeah.

Or at the very least, it  couldn’t have been  100% effective. When one of our friends first suggested this, Charley and I thought back to those days and looked back at our notes. Sure enough we saw a pattern. When the doctors added medicine to her IV things got better. When they gave her Tylenol with Codeine  (either orally or “down under”) things even  improved. But she seemed to be in more pain than I was expecting overall despite that epidural. Back arching, facial contortions that went beyond grimacing, and the inability to even  speak was not, as I believed at the time,  a universal experience for this surgery. I believe now that  we should have  asked the epidural be  removed and regular, intravenus  meds be given in its stead to keep on top of the pain.  

This realization has made me  angry with myself and sick to my stomach.  I was crying to my husband about what Laelia must have  gone through and what she must think. And then it  occured to us (because we’re  slow like that) to ask her!  And during the subsciquent  precious conversation with my little one, I  was taught  what happiness, endurance and hope look like.

***

(My thoughts/words in parentheses as Laelia shares her story.)

The hospital loves me. (Everyone loves you, kiddo.)

Surgery hurts my bones and need to heal. My bones are right here. My surgery was right here. (She only points to her right side; it hurts a little more than the left.)

Hurting a little is okay. Not when it hurts a lot. (True wisdom.)

I want to stand and walk. Kids who stand and walk  get surgery. (Oh really?)

Surgery makes me sad.

(“What made you sad, Laelia?”)

My legs.

I  don’t like things in my nose. (The oxygen.)

I don’t like my medicine.

Takes a long time to poop.

Moving  me  hurts me right here. (Again she points to her hips.)

Doctors picked me up from school. The doctor take me at school.  (I’m not sure on this one since asking clarifying questions always results with the answer, “Yes.” I think she is sad she missed school. And maybe she mixes that thought from when the doctor picked her up to take her into surgery?)

(“After your surgery what made you mad?”)

Mama, I want that my kitty come with me. (We took her stuffed doggie, but not her kitty. I had no idea she felt this way! We immediately got her old stuffed kitty, it’s one of many, and apologized to it.)

I DO NOT like that in my nose. (Oxygen again.) And not in my eyes. (When it fell off her head.)

And, I dunno.

(“Laelia, was there anything that made you happy?”)

(I didn’t expect this list to be  so long! She simply  lit up!)

Mommy and Daddy,  both persons  in the room. When I wake up too both persons.

When they put that (oxygen) on my head and not in my nose. (Okay we get it!)

Um  we talk  about Disenyland.

Go to Disneyland in four weeks. (Sooner, but she’s got four weeks stuck in her head.)

Flying on  the airplanes and seeing clouds and city lights.

My tiger because he goes RAWR!

Surgery means to stand and go and go and go. (I believe this is her sharing her hope.)

Nemo. (She then quoted SEVERAL lines from this burned-in-my-brain-forever movie.)

I watch a lot of TV and then had to blink my eyes like this. Blink blink blink.  I watch TV and my eye hurt.  (That is a lot of TV.)

I love Mama and Daddy and Chelsea and Tiger.

They (hospital staff) give me chocolate pudding.

Helicopters that come and you say Help! Help! and they come and take you and make it okay. (?????????????)

And my blankets.

Red! That color is the favorite. (She got a red blanket and pillow case from the hospital.)

And I can do this! (She grabbed her bar and grinned.)

Dancing.

Um…… I… I is a happy girl. :)

(AND SO SO SO SO SO PRECIOUS! My blessing from God.)

(What more could I be thankful for this Thanksgiving?)

Love is (a) Patient: Part 2

Monday, November 22nd, 2010

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.)

Love is (a) Patient: Part 1

Saturday, November 20th, 2010

Here is part one  of the two part summary of our daughter’s  major surgery in Philadelphia at Shriner’s Hospital for Children. I decided to be thorough on certain details of this trip since I know of a few people going in for the same (or  a similar) surgery,  and I wish I had known a bit more of the overall process. So since I don’t have the time to sit down and pour my heart out in one blog post, and my kid is finally sleeping,  here is part one.

Night before surgery.

Watching Daddy play Mario. (This is how she likes to stand, wedged between the coffee table and couch.)

Laelia rubbing my back while playing peek-a-boo.

We  cuddled and stayed up late  the night before our trip  for those extra hours of family time. We also took that time to once again talk about where we were going and what we were doing. Yet despite that, Laelia happily announced that we were going to Disneyland while she helped me put her clothes in the suitcase. When I corrected her and talked about surgery, she corrected  me and says, “Daddy told me.” Well Daddy got in trouble. Then Daddy spent the rest of the time explaining that we weren’t going to Disneyland until much, much later. “Tomorrow?” Laelia asked. *sigh*

Laelia was a good little girl. She hand-picked one stuffed animal to come with us, her doggie, then comforted her doggie on its upcoming surgery. “There there, doggie. It be okay.” She was a good flyer. During the entire day of flying she only had one melt down. When we got on our second flight after a snow-covered Denver connection, she haggled with us, “Last plane today, okay?” Since it was, we agreed to her demands and the melt down ended. We also found out on our lay over that Ronald McDonald house near Shriners would take us for the night, and possibly for the week.

Then Mama had her own melt down after arriving in Philly when we realized we had missed several calls from the hospital. They were all informing us that our surgery time had changed from 6:30 to 10:00 am. Since I had been told 6:30 am, and that had been the plan for months, and I’m not good with last second changes, and it was  a different story than I’d heard from the  surgeon’s scheduling person, and and and… let’s just say  I wasn’t sure it was correct. And of course even though the PACU was suppose to close at 5:30, it was 5:12 and no one was there. I started to  cry, standing there  in the middle of the airport, calling people at Shriners. I reached a lone admissions desk person who, after apologizing for laughing when she realized I was freaking out,  convinced me not to show up at 6:30 just to wait for hours with a hungry toddler.  She wasn’t sure on the time, but she was sure the PACU people would have told me the correct time.  But  I just didn’t want to risk all the time and effort and set up it takes to  fly across the country with your daughter  then miss  a major, important surgery just because I wasn’t willing to wait a few extra hours in a waiting room. I didn’t know what to do.

Thankfully we  arrived at Ronald McDonald house on Erie street to a welcoming, calming environment. Instead of doing orientation they suggested we eat dinner first. In the dinning room a soccer team of girls put on a puppet show and dressed  up my daughter and another adorable girl, Sabina, like princesses and sang songs. Sabina’s dad, Michael, started talking to us about what our daughters would be doing tomorrow. It turned out he had an early appointment, 6:30 am, with Dr. Van Bosse, our doctor! Well since Dr. vB can’t be at two places at once, I was finally at peace that our appointment was indeed at 10:00 and we’d all get to sleep in. He was at the right place at the right time to calm all my fears.

I guess I should explain a bit about the Ronald McDonald house. They don’t take reservations, so the only stressful thing about them is  not getting to know where you’ll be staying until the day of your trip. That said, Ronald McDonald house is like Grandma’s: there is plenty of food, lots of toys, friendly people and you can go through the cupboards and pantries like you own the place. And you’re expected to clean up  after yourself before you leave! It’s also a place to can be alone, or you can meet other people in your situation. It is your home away from home, and a lifeline to a lot of families who can’t be with their hospitalized children without paying through the nose for a hotel otherwise.

   

We had a large room with two beds. But Laelia, in usual Laelia fashion, was being a big turkey and refusing to sleep. So we locked her in the closet! Haha, I’m not kidding! We put a blanket bed in there and when she immediately sat up and worked the door open, we put her back and closed the door on her!   So she had a tiny little bedroom, Harry Potter style! :) I felt bad about it  so as soon as she quieted down (about ten minutes) I opened the door. Then Charley took this picture of her sound asleep. So cute!   That dirty bottom was from scooting around in the airport on those dirty floors. I’m thankful she started the hard day ahead well rested. She woke up cheerful and full of life. I started the long day ahead with dread.

It’s a funny thing. I would think I was handling everything fine and then I would throw up with nothing to blame it on except stress and worry. This happened twice–once  Thursday night and again Sunday night–and both times I was surprised by it. Since I mostly felt very peaceful, I mean for the circumstances. In fact,  I’ve felt more peace about this surgery than any of the other three, even though this  will be the  most major. Besides being terrible at internally handling these situations, I do handle them well outwardly. Then I throw up apparently. I truly believe I did better this time because of the number of people praying for us. Sure I was stressed and worried, but I didn’t have to deal with the depression or morbid thoughts that I have before. I felt lots of peace flowing my way. And it was something outside myself.  The other several differences between this surgery and the former ones were that I was more prepared for this one, I had more say, I had more questions answered by the doctor (who I have a crush on) and  I had more hope. And, people were sending us their love, positive thoughts and praying  lots and lots of prayers to God on our daughter’s behalf.

One stresser was transportation. The rental car companies at the airport wanted to charge us  $500 for those days we would be in Philly, for their smallest cars! Our budget was $200 total. We tried to do the whole thing with cabs, but we had to go between the hospital and RMD house too often. Then while looking up prices online I stumbled across something a whole lot cheaper, but I had accidentally found something in Philly but outside the airport.  But that place closed too early and we’d miss it. So Charley found another place and flat rates for cabs  online to get there.  So we ended up taking a cab  to  another rental place, then the rental car to Ronald McDonald house. It was a round-about way to do things, but  budget friendly! I suggest it for anyone  needing to have a substancial stay in Philly. We used Enterprise in Downtown.  (Tell the cab driver their address–36th S 19th Street–or it’s hard to find.) Cab there from airport: $26.  

Our hospital is surrounded by the ghetto. I’ve said this before, but I  was hyper aware of it having to make a lot of late-night drives through it. Plus having to deal with the non-stop sirens at night or crazy  drivers/pedestrians during the day… bleh. At least this time with Charley with us, we transversed those terrible, confusing signs and streets that make up north Philly, and actually found the Shriners entrance/parking lot this time around!

Shriners’ Hospital’s Waiting Room Vrrrrrroooooooom!

We arrived at Philadelphia at 10:00 am and were still waiting for surgery at 12:45 pm. So glad we didn’t show up at 6:00 am! Every time a person came to check Laelia’s measurements, blood pressure, temperature or simply to take out the trash in the room, Laelia freaked out. She was scared. The people at Shriners are nicer than any other hospital we’ve dealt with. They care. Period.  That’s the difference most of the parents I’ve  talked  with notice first. These people know how to distract a child, talk to  them and work quickly through their screams of protest. But despite this skill, Lali was still pretty freaked.  When we walked into the PACU and saw the nurse, the first thing Laelia did was cry and shake her head, “No no no no no!” The nurse put a hand on her and said, “I have a very important job for you to do, okay? Are you ready?” Laelia nodded quietly. Then the nurse showed her a wall of bears and asked her to pick out her special surgery friend. Laelia started to relax a little.

Finally they gave her something that left her inebriated. She went from completely rigid to totally relaxed. She kept sliding off my lap even! Then my drunken baby girl began to sing silly songs while slurring her words, and with that reddish hair  it really brought out the Irish in her. :) When the man in scrubs  came to pick her up and carry her into surgery, instead of freaking out, Laelia went complacently with him.  I watched them walk down the hall as her head swung limply, like a sack of potatoes, in time with his steps.

And she was gone.

My arms, that she’d been in since we walked into this scary place, were unnaturally empty. I was clutching her blanket  really hard to remedy that empty feeling. When we stepped into the elevator to head back to our room I caught a glimpse of myself on the elevator’s reflective metal wall and I looked like some melodramatic lifetime movie reject. I made a conscious effort to relax my body and facial features  to look, what Charley refers to as,  “not crazy.”   We went to the cafeteria first off and forced down some fried food that sat in our stomachs like rocks all day. Bad move. A nurse came in while we ate to let us know they got the epidural  and IV in (a potential issue with arthrogryposis patients). We thanked her for the  news, but it became harder to  swallow after that.  We called family, watched Man Men, hung out with Sabina and her daddy for a bit and paced. Well I paced, while Charley kept trying to grab me as my course sent me within a foot of him.

I called the PACU around 2:40 pm. They had just finished with her first leg and were just about to break her second leg. Waiting after that became harder. I paced some more. The last half hour was the worst. My stomach hurt, I felt sick and  every minute felt like it had been too long and something  had to  have gone  wrong. I was on the seventh floor in the  waiting room that had large windows looking out over the ghetto. I’m afraid of heights and was going slightly mad. My mind played this trick where I could imagine myself falling as the floor melted away, and then  for a second every so often it felt like it was actually  happening. I started to think about worst case scenarios. Just as I started to get really morbid and my stomach lurched,   just under five hours after handing my child to a stranger, the doctor we’d traveled across the country to see walked into the room.

The surgey was done and we could see her in about 20 minutes. The sites looked good, but  her right leg gave him a bit of trouble. She wasn’t as straight as we’d hoped, but this was definitely a great first step towards standing up straight. But because of her epidural, her recovery would be in the ICU until Thursday. And hopefully we weren’t too set on flying back Friday.

My skin was crawling because I wanted to see her so badly. A woman led us to Lali’s room at a pace much too slow for me. Laelia started crying once she saw us. I looked at her little face, so sad and  angry and  drugged, and my mommy instincts kicked in with all the comforting I had within me. I blotted at her sweaty face and told her it was all over. She always looks so little after surgery, so tiny. She was hooked up to so many different machines. Her breathing was labored and she sounded really congested because of the liquid in her lungs. She didn’t talk or smile–so unlike her. Then I looked behind me  to see my husband, my rock, completely lose it–big tears falling down his cheeks. He excused himself from the room and sobbed.

Last minute stress

Friday, November 12th, 2010

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.

Philadelphia Shriners

Saturday, June 19th, 2010

We survived! Four hours of sleep. Four planes in two days. Air sickness. CONSTANT Laelia chatter/attention  grubbing! :) Five partial viewings of Finding Nemo. Sore arms that ache. Bruises from carrying the car seat. Ripped our bag open. Got lost three times. Stress. Got lectured by a flight attendant because my daughter was sitting instead of standing. Cried twice. Had to advocate several times. It was hellish. Travel. Ugh.

And there was a point, after getting lost (again!) while driving around Philly, then being two hours late because we went to Temple Hospital instead of Shriners Hospital, when I wished the doctors at Shriners would be mediocre so I’d never have to do this trip again. Never again!!!

Unfortunately for me and fortunately for Laelia, Dr. van Bosse is now our orthopedic doctor!

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And we’ll be back to Philly three times in the next 14 months if things play out right.  Yes, that means surgery. I didn’t schedule it yet since I need to plan the time off work and to talk it out with Charley, but it most likely will happen as soon as we’re available. ASAP. Probably after this summer. I’ve already met with the  anesthesiologist, Dave, and gotten the details. Now it’s a matter of logistics, and processing.

And since we live so far away, they’re going to treat us like an international patient (since people with AMC come here from all over the world), and try to limit our trips back and forth. Maybe we’ll do a few follow up appointments in San Diego then forward the results to Philly. They’ll also be in contact via email and phone.

We’re not doing the derotational osteotomies on her knees we’d heard about in Seattle, not yet anyway.  We’re doing a surgery that makes much more sense for right now (a whole methodology that makes much more sense), that will allow Laelia to put her legs together where the IT band releases (surgeries from September and October) could not.

So far our surgeries have focused on soft tissue issues.  But Dr. van Bosse is going to focus on her overall body shape and do a surgery to cut and reposition the  bones in her hips to fit what her contractured body is already doing. And the result will allow her to do more and look more like a typical kid. (Notice how I didn’t say ‘normal’ kid? See, I’m learning. :)). It’s called a reorientation. (It’s also called a big, long four-part name that my sleep-deprived brain could not retain.) We’ll get everything in writing first then contact them to set up the appointment. It puts us in Philly about 9 days, then flying home, then flying back six weeks later for the cast removal (and they may give us KAFOs at this point since they’ll be casting her for them before surgery). Then flying home. Then flying back in a year to get pins, clamps, etc, surgically removed and start a new surgery on her foot, etc etc. Our future may be tied to Philly for quiet some time.

Since her hips are in the sockets, but they’re externally rotated and contractured, this would be the best surgery for her. But I didn’t have to just take Dr. van Bosse’s word for it, as so many doctors expect, but instead he pulled up a few other patient files (children with arthrogryposis who had been through this surgery) and he showed me their progress.  We had taken Laelia’s x-rays while we were there. (She’s less scared of the machine if she can be a ham. “Smile for your picture, Lali!” did the trick. :)) This allowed us to compare her x-rays with other kids with arthrogryposis until the doctor found one with the same shaped hips and legs in their x-rays. Then I could see that child’s x-rays after they had had this surgery and know exactly what to expect Laelia’s surgery to look like. It was exciting.

Dr. van Bosse wasn’t just showing me what he wanted to do, he was showing me what had worked for other kids! An amazing experience! A new experience.

I have met with doctors who didn’t even know what arthrogryposis was, or had trouble pronouncing it, and some of them even gave us advice on surgery or therapy. Even our expert surgeon in San Diego who does have experience with arthrogryposis seemed to pale in comparison with Dr. van Bosse’s experience. It felt like we’d arrived at arthrogryposis mecca!

We also met with Dr. Kozin. It’s fun to get looks of wonder from your doctor instead of horror that your child has so many degrees of passive range in her elbows. Doctors who are familiar with arthrogryposis know Laelia is lucky in this regard. Where other people would  bemoan the fact she can’t lift her arms (including me at times), these guys are in awe of the fact that she can reach her mouth and doesn’t need surgery! Oh and Laelia had not known Dr. Kozin more than 30 seconds before falling in love.

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I have several more pictures like this. If Dr. Kozin was the cuddly doctor, Dr. van Bosse was the playful doctor. Lali just giggled as he measured every joint, instead of fussing like she usually does.  She seemed to like everybody. Ooh she liked Mimi too!

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Mimi too!

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Her “airplane hair” afro for the trip. You can’t see it, but on the other side I stuck her comb in her hair and it stayed. :)

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So glad they put these racing cars in every room! Vaaarooooom!

Laelia was such a good little girlie for this trip! I was specifically worried about this. I mean, sure, she was demanding, but mostly in a sweet way. She doesn’t sleep on airplanes so she had to be constantly entertained (constantly) on all four flights. I felt like Super Hero Mommy by the fourth flight. Well she did finally pass out on the last flight home at around 11:00 PM. And she fell asleep for almost 40 minutes in between flights, including sleeping through a shuttle ride.

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Another huge blessing was that we got to stay at the Erie Ronald McDonald house!!! I called as soon as our plane landed in Houston (the day of) and got the okay! (They don’t make reservations so you call the day of.) That cut out having to search for a hotel or make other plans last minute. It was an amazing house! One of the roads on my Google directions was closed so it took an extra 45 minutes to find it (d’oh), but once we got in there they were so nice and friendly. I had just been on a plane with a mean person who made us feel terrible that Laelia couldn’t stand or walk. Long story. So when I put Lali on the floor to scoot around and saw a Ronald McDonald  volunteer  approach her, I inwardly tensed. But they just wanted to play! The volunteers were all amazing! There was always food around even though we never made it to a single meal on time and there were plenty of relaxing areas to unwind. Laelia loved the therapy dog, Boss, and they gave her a free toy doggy that she adores too. We couldn’t enjoy all they had to offer since our schedule was so tight, but I really hope they are available to house us again when we go back for a little over a week.

Only bad thing about Ronald McDonald house is that it had this magical ability to keep Lali up all night. :) She slept five hours. I got four. We tried her on the floor where she screamed bloody murder for twenty minutes. Then we tried her in my bed with two chairs with large backs against the side of the bed so she wouldn’t fall off. She played, she sang, she screamed. It was enough to drive me crazy. She even removed her splints, DB bar brace and was starting on her AFOs before I stopped her. She started hitting me in the face at one point. And kicking the bed over and over and over. Then she got really upset that Pooh Bear didn’t close his eyes to sleep. She kept trying to close them and telling him to go to sleep already! Haha! Every time Laelia gets in trouble, it’s not long before Pooh Bear is in the SAME trouble! At Tim and Nicole’s wedding last week, Laelia lectured Pooh Bear about keeping quiet during the ceremony. SO STINKIN CUTE! :)

So when I woke her up at 8:00 AM to leave, she was so out of it. She gave me the same look she had given me the day before when I woke her up for an early flight. That “Are you kidding me?” look. :)

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Exact words, “No Mama. I asleep. Bed pweese.”

I mentioned I got lost… yeah, just about every time I got behind the wheel.  Maybe it was the lack of sleep or the noisy kid in the back seat, but I’m pretty sure Philly is just a ridiculous place to drive in. Not only that, but I got lost in a not-so-great part of town. It’s funny because this great hospital is surrounded by ghetto neighborhoods. And if the jay walking, lack of clothes, yelling, kids drinking of a broken fire hydrant or constant sirens weren’t clue enough, we were warned it was “ghetto” by hospital staff, other people who have been there, the car rental guy and several patients. So getting lost at night down one way streets was not fun.

Okay so I’ve hinted that we had a bad experience with yet another airline person. But after four flights in two days it could have been worse. We got our tickets for Continental flights through Mercy Medical Airlift, and appreciated it so much! That said, there were a few things I would have done differently if I had been booking my own flight. Not having to get up super early or get home super late would have been one thing. Getting window seats for the car seat would have been another thing. Getting wheelchair or special  assistance set up before-hand would have been a third thing. But Continental employees were helpful. When we first arrived I had two of them cooing over my kid. Always the quickest way to my heart. Then we got wheelchair  assistance, and knowing how to request it now, had it properly set up for our connecting flight in Houston. They even gave us a ride to our connecting gate, which would have been difficult to make otherwise. All in all they were very  accommodating  and I don’t know how I would have lugged everything I had to lug without them.

My only two complaints have to do with  arbitrary  rules and one flight  attendant’s  enforcement of these rules.

Seriously having a personality that HATES breaking rules or getting lectured on breaking rules AND  doing four different flights in two days gives me perspective on how arbitrary these rules are. Flight #1 required we put a car seat in a wheel chair and have an employee wheel her down the ramp backwards. I couldn’t touch her until we got to the plane’s door. Flight #2 was similar, but they insisted I check the car seat, which didn’t end up happening, more on that later. Flight #3 I was informed that under no circumstances could she go down in a wheelchair. It was unsafe and against airline policy! Seriously? I’d just been on two flights with them yesterday and the story was different. Flight #4 they made a big deal about it. I was given options. Did I want her to go in a chair? Or be carried? And how could they help? (I felt like they were saying, “Why are you putting us in this situation?”) I just wanted to say, “Just tell me the exact policy and stick to it! I’ll follow whatever the rule is!”

Not just entering and exiting the plane, but on the plane the rules tended to change. It wasn’t until flight #3 that we were told our portable DVD player was against the rules. It had to have head phones. Flight #2 all the flight attendant said was, “What movie is that?” And Laelia said, “NEMO!!!” And that led to a couple minutes of Laelia explaining who every character in the movie was. :) But one flight later it’s against the rules. Okay…

Oh and placing the car seat was a pain. We had a window seat on Flight #1, but on the rest of the flights we had an aisle seat for the car seat. On Southwest, the week before, we were told putting a car seat in an aisle seat was against FAA rules and that this applied to every airline. But here it was okay I guess. It all depends on the day, and the whim of those enforcing whatever rules.

Okay so back to Flight #2 when the incident happened. They demanded I check the car seat. Since Laelia can’t sit in a regular seat and WILL NOT keep her seat belt on for any length of time, which leads to battles the whole flight, I had to insist that I didn’t lug this thing around for fun’s sake. The flight attendant then wouldn’t let me board for several minutes while I stood at the front of the plane and she inspected my car seat while grumbling loudly. I must have heard, “You need to check this,” several times. Telling her I’d been on five flights with it in the last two weeks, one just a few minutes ago, and it was just fine, only led her to speaking to me in a less friendly way. A few long minutes later they found out the seat was approved (which is what I’d said all along) and let me on. It was at this point that I took the opportunity to explain why Lali needed the car seat, and I informed them that Laelia had disabilities, and without working arms to break her fall, turbulence could knock her around in a big seat. The only reason we have to buy a seat for her is because of airline rules. The only reason I bring a car seat is for her personal safety. I was apparently ignored.

Later on in the flight the seat belt light went off and I was able to get up with my kiddo. I knew I wouldn’t be able to do her daily stretches here, let alone some PT, but I did need to get her joints moving somehow. I went to the back of the plane by the restrooms after I’d seen two other parents of small children take them back there. I put Laelia down on her bottom and she stretched out a bit. This is when the incident happened.

A lady who was not nice to begin with, let’s call her Cindy because that’s her name, lectured me on how dirty the floor was. I’ve heard this from so many “concerned” people that I was tempted to ignore her entirely, but I did respond that I didn’t mind about the dirty floor. It’s funny how people don’t care about the bottoms of kids’ shoes getting dirty, but the bottom of their pants is a different story. But, no, that wasn’t good enough. She insisted that I should immediately get my child off that dirty floor. And that being there was “terrible.” I had seen other children stand just where we were and they were not told about how filthy it was, so I then restated that I knew it was dirty, but it was fine for her to be dirty. She then ordered me (not joking) to get my child off the floor right now! I got my advocate hat on and asked if this was a written policy (since I hate breaking even stupid rules, it’s against my personality) and she said it was! No being disabled on the plane, folks! :) I asked for her name, intending to introduce her to Laelia and get Laelia involved in the discussion. I’d heard that works really well and is a nice way of informing people without  ostracizing  Laelia. But I got so much fire back from that lady that it sent me to tears and I found my voice, along with my advocating powers, diminish under her anger. In fact I was so distracted by the way she spoke to me that I didn’t notice a guy behind me who needed by, which sent Cindy into a rant about how my child was blocking the aisle! I moved, Laelia didn’t, and he got by fine. At this point Laelia started to fuss, which led to tears. Cindy ordered me in a nasty tone of voice to pick up that child right now! I pulled her in my arms and she screamed, “NO NO I STRECHING! MAMA NO!” How terrible for a girl with contractured joints! I put her in the bathroom stall to get away from Cindy and sat there stunned until the  fasten  seat belt sign came on.  Not being able to stay in my shelter after that, I moved back to my seat, but on the way I tearfully explained why we were even back there to the fellow employee who had witnessed the whole thing. He  apologized for Cindy, said she was wrong, but he seemed slightly  afraid  of his lead flight attendant. We took our seats and tears wouldn’t stop, but I hid them well. I heard Cindy complaining about us to the guy we’d just spoken to and he told her about Laelia being disabled and not able to stand up, which sent her into a rant about how right she was  despite  the circumstances. We were in row 34 of 37 so I could hear her in the back. Not every word, but I heard her. I was trying to gather my thoughts. Were we really just discriminated against for having special needs, because we couldn’t stand like the other children? Or was there actually a rule we broke? That kids who don’t have disabilities don’t break? And if so, is that a good rule to have, Continental? As I thought about it, I could hear her still going off behind me. Her tone of voice was like a knife to my insides, from three rows away.

If she indeed had been working for Continental as long as she says and was a lead flight  attendant, what kind of training had she not been receiving for those many years?

Thankfully, and I could have kissed her, Cindy showed back up at my seat to tell me off some more! (Or maybe to  apologize? But you can’t apology if you’re “not wrong” so it came across badly.) Yay!!! Now the tears had cleared, my thoughts had cleared, and we were both well aware of her discrimination against my daughter. Mama Bear was back in action! I said things like, “I appreciate being warned about unsanitary conditions, but I do not  appreciate being ordered to pick up a child when other children were allowed in the same area under the same conditions!” She tried to tell me that the seat belt sign was on during this, and I interrupted and informed her that that wasn’t the case, and it only came on after we entered the restroom. And, after hearing in the  pseudo-sweet voice that I should really ask to be seated in row 7 next time, (grrrrrrrrrr), because they can put down a blanket or something for her, I responded, “Look, I am the expert in my child’s care. And we don’t appreciate being treated this way.” BOOYAH! Thank you thank you thank you so much for coming back and not letting this end with me in tears and my daughter undefended! :) Finally Cindy and I could not come to an understanding and she left. (In other words, we were both “right” in our own eyes.)

So okay that was hard. I was already so stressed about what we’d learn the next morning, and part of me forgets my kid is disabled until she’s treated differently than other children, like she was on that flight. But nothing could be funnier than when for Flight #3, the very next day, I get on the plane and who do I see? Cindy! Again! She was as surprised as I was, “Wow, you again. That was a fast trip.” She said. I responded, “Yep.” Then Cindy jumps over herself to get my bag, ask if I’d gotten to switch to row seven for this trip (no) and snaps at fellow co-workers to help Laelia and me. Hahahahaha! I texted Charley, “Guess who our flight attendant is again?” And he texted back, “NOOOOOOOOOOOOOOOOOOOOOOO!” :)

At one point in the flight, Laelia said “hi” to Cindy and Cindy was like, “Does she want something? Water? Can I get her water? Does she need something?” Wow, I think she had a day to dwell on our experience and found herself in the wrong. Or at least very much in trouble if I wrote a letter… which I am *that* person who rights letters, so she’s rightfully freaked. :) I asked Laelia if she wanted anything and she says, “SOCKLET!” (Chocolate) So Cindy came back with Hersey bars for Laelia who gobbled them all up! :) Spoiled kid!

I really have to consider my own actions and reactions in these situations. I feel like I’m getting stronger as a mother, but I’m still awkward in these situations. How terrible it would have felt to have ended with me crying in the bathroom? I know I don’t like authority much because I’m a pleaser and authority can take advantage of that, but I do want what I want, and I want to do what I think is best for my child. Of course I don’t want to push or bully, and often have difficulty finding a balance between nice and pushover. But in this case I believe we were 100% in the right. Which is a position I’m most comfortable with. :-D And I’m so oo oo writing a letter. :)

There were lots of times I felt discouraged on this trip and was almost immediately reminded that people were there for me. At Flight #3 when all the rules for entering the plane changed (overnight, I might add) I got a text from Lauren saying she was praying for us RIGHT NOW. :) I also got a couple similar texts from Chelsea at just the right times. And my dad even called and left a voice mail message that encouraged me as I was absorbing the news that we’d be back for another major surgery or two.

All in all I felt this strength and peace that isn’t something I naturally carry around with me. I felt God’s presence during these really  hard times. I’d be in a situation I couldn’t handle, praying for help, and nothing around me would change, but I would change. I’d feel the strength to read Laelia yet another story. And for those of you who get motion sickness (or what I call air sickness), you know how awful reading can be during those times. But we did it. And Laelia doesn’t seem worse for wear. I’m exceedingly thankful to God for his provisions when I was all alone and responsible for my daughter’s care.

Okay I blogged about it. And once again informed my spell check that “Laelia” and “Arthrogryposis” are words. Now I’m adding “Kozin” and “van Bosse” to the list. *sigh* Now I’m going back to bed. :)

Better

Thursday, December 10th, 2009

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I forgot to update everyone on the doctor’s visit. It went well. We changed up Laelia’s diet a little and haven’t had any problems with food coming back up since. She is back to the energetic, talkative little kid I’m used to. We haven’t had a single problem in days so we even sent her to school today and rescheduled our OT/PT appointments. :)

The only issue we’ve had at all is Laelia’s new lack of interest in food. She only eats a few bites of food and is losing weight. I wonder if all the throwing up made her distrustful of food. I ended up giving her six little cookies last night for dinner because that was all she would eat, and I was worried about her wasting away. Chelsea also found some lactose-free milk that is packed with calories which she has been drinking a little of.

Well in other news, Lali looked well enough to pose for a few pictures for our Christmas cards this year. The picture above is one I won’t be using, but one I thought was cute. :) It’s the only picture where the hat is not driving her to hysterics. :)

We also put up our tree. Here’s a picture of it before the cats got to it. :) She now says, “Cheeeeeeeeese!” when you take her picture. It’s so cute! :)

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Merry Christmas!

Still sick

Monday, December 7th, 2009

Lali threw up again this morning (Monday). We have a doctor’s appointment for her tomorrow morning (Tuesday). Between the stomach flu that’s going around and holiday schedules for doctors, it’s not easy to get an appointment, but since she has a gain-weight order from her doctor and she hasn’t eaten really anything much in almost a week, we get to take her in. I really thought this was behind us, but her hair and bedding are once again disgusting. She’s also having diarrhea. I Just pray this doesn’t last much longer. Now she won’t be able to go to OT or PT that she really needs. She has a broken splint that has needed fixed for days that she’s going without. I hope this is over soon!

Enjoying the health!

Sunday, December 6th, 2009

I guess that last post  first thing  Saturday morning was the very last time we’d see stomach contents this year. (Knock on wood.) Maybe it was a fluke? I dunno. Anyway, the rest of the day Saturday went okay.  That  afternoon I gave  her hair the baking soda paste treatment for two hours. She loved that. Yeah. Not. :)  But at least it did the trick. No more puke. No more puke smell. I like it. Here are the pictures. I won’t give you the before shots (because I’m nice), but here are  the during and after shots. (The white stuff is baking soda paste, not puke. The puke was orange.)

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Not happy.

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Daddy is making fun.

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All clean!

I am so very thankful for my healthy family! Charley and I have been over this stomach bug  since Friday  so to see Lali (who started before we did) take this long to get over it was hard. She was her old self again today except she’s not eating much.  She had three bites of  toast with peanut butter  for breakfast and two bites of  green beans  for a snack, milk for lunch and then three bites of  spagetti  for dinner.  That’s not counting the countless things I tried to feed her that she spit straight out. We’re not taking to her to school tomorrow to see if she’ll eat and nap like  normal. And if she looks  fine and eats fine then we’ll take her to  her PT and OT appointments which are long overdue because of Thanksgiving and also scheduled for tomorrow. In preparation for OT/PT  I did Lali’s stretches today. Boy did she not like that! She was so stiff! I bet it felt good afterwards! I did notice her hips are a lot stiffer. I’ll have to keep an eye on them.

So far today I’ve cleaned my couch, my tables,  my puke bucket, scrubbed spots all over the house, used up a can of Lysol and almost an entire box of baking soda (which takes the smell out of everything!), did the dishes, washed four loads of laundry (with soap and baking soda), changed the sheets, cleaned out the crib, picked up the living room, dusted the bedroom  and put up our stockings and  a Christmas tree! I’m feeling like super mom again! :) Charley, among a few other things,  did all the vacuuming and is folding all those four loads of clothes as we speak. I’m also hoping he’ll take out the trash. Life is good.

Thanks for all your prayers and thoughts and support! Oh and advice! I’d never had the stomach flu as a family before. Not really the bonding experience I was going for. :)