Archive for the 'bye-bye' Category

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.

Ups and Downs

Sunday, September 19th, 2010

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

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

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

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

Ha. Ha.

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

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

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

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

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

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

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

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

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

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

“Megan and Joshua and school!”

“Um, just school honey.”

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

*sigh* “Yes, school.”

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

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

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

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

Real Bed

Friday, September 3rd, 2010

First night in a big girl bed!

But she looks so little in it!

Lali is beaming at the camera while daddy tucks her in. :)

My little girl is sleeping in a real bed tonight with a pillow and sheets!  *sniff*   Her first real bed! And she is completely dwarfed by it!  :)

We had to take out the box spring to make it  low enough to the ground to be safe, but this  hilariously meant that every time Charley or I sat on the edge of  her bed we  created a  small sinkhole that Lali would  slowly be pulled into. :)

We also had to leave off her Dennis-Brown bar (that connects her AFOs) since I didn’t want her to attempt to scoot off the bed in the morning and get stuck.   In my head she sleeps all night tonight like a good girl, and then instead of yelling her usual, “I’m awake! Come get me!” in the morning, she instead decides it would be more fun to scoot off her bed and go to her bookshelf and let her parents sleep in!

But if at midnight I have to pull that child out of her closet then she’ll be  in so much  trouble!   :)

Laelia  is a big girl now. *sniff* And she needs a big girl bed. *sniff sniff* The crib would have lasted many more years (in fact I could probably  fit a teenager into that thing and don’t tempt me!), but I wanted her to feel a sense of independence and growing up. She hit some major accomplishments this last  year that has allowed us to even consider a big girl bed: successfully sliding off the couch, scooting around  on her bottom and  sitting up from a  lying down position all by herself.

And  it’s not like we had to go out and buy a bed; we had one already–Mama just had to  put  her in it!

*sob*  My baby!  *sob*  :)

Part of the reason I put it off for so long was  due to  my  loathing for  all things “growing up”: from normal things like potty-training or  (the pressure to start) walking  to emotionally-crazy things like  becoming one year closer to leaving Mommy. :)   The other part    of the problem was that I wanted to be there when she woke up for the first time in her new  bed.  With our staggered schedule, I leave for work before the sun rises, let alone the child,  while Charley is there for Lali in the mornings yet gets home really late.  So  the switch had to take place on a weekend.

*Side note:  Once school starts at the end of the month, we’ll have more time all together  as a family!

Tonight I asked her if she wanted to sleep in a real bed. She responded enthusiastically, but that was probably because she thought this new arrangement would somehow put off her bedtime–as any last minute,  evening plan does. But she went down without a fuss and grinned for the camera as I documented the moment.

Now if only I could use this gift of big girl bedtime accoutrements in exchange for bribing her into staying two years old forever… hmmm…

Surgery date change

Wednesday, August 11th, 2010

Got a call today and Laelia’s surgery is now scheduled for November 16th. (She’s having the bilateral proximal femoral reorientation osteotomies.) Apparently they decided they needed more time for her surgery than November 11th’s schedule allowed for. She’ll be surgery #1 for that day (since she’s the littlest!), so we will need to show up at 6:30AM that morning. I emailed the Miracle Miles people about transportation this afternoon. In fact I had my finger hovering over the send button on an email to them when the nurse coordinator rang my phone to change the surgery date. Excellent timing. :) Now we are requesting to fly out on the 15th instead of the 7th.

November 16th gives us a tighter schedule which has its pros and cons. Mostly I think this change is for the better, and that makes me happy. Or it could be all the chocolate chip cookies I just ate. Either way… GLEE! :)

Vegas and back again: A Mommy’s tale

Saturday, July 24th, 2010

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

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

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Click on the picture for the video.

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

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

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

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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. :)

Time with family

Friday, February 26th, 2010

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Wiping off the chocolate remains of what was actually Nate’s sundae. :)

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Laelia’s cousins (Nathan and Josh) at Nate’s goodbye dinner.

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Lali (on the drive home): “Where Nate?” Me: “He had to go bye-bye.” Lali: “Bye-bye Nate.”

Two minutes later. “Where Nate? (She thinks about it.) Nate bye-bye.”

 

Oh and Laelia totally wants a tattoo now. (Nate is a tattoo artist.)

Me: “Laelia, do you want a tattoo?”

Laelia: “YEAH!”

Me: “Laelia, do you want hepatitis?”

Laelia: “YEAH!!”

Me (mock scolding): “What do you say?”

Laelia: “Pleeeeeeease!”

:)

Sickness is Spreading

Sunday, October 4th, 2009

Grandma Christina and Grandpa had to leave early this morning because Grandma got really sick. I’m starting to feel it in my throat as well. Hopefully it doesn’t spread further. Charley was blowing his nose, but that’s about as much as colds affect him.

Laelia seems to be fussy, but not with a cold we don’t think.  Although sometimes I look at her and think it’s a cold. She’s very white and covered in big purple and blue bruises from four attempts at an IV line and one IV line mark. It looks awful.

I remember when we were in the hospital and I saw her for the first time after surgery and she looked so white and pale. Like death. All of  the color was out of her cheeks, and  my heart sank as I looked into that pastey face. Then THREE different  nurses commented that she looked  exactly like me! :) Yeah we’re pretty white in my Irish family.

Laelia used a toothbrush all by herself to brush her own teeth for the first time in her life yesterday. She also learned to “go on a bear hunt.” She slaps her casts to make the walking noise and can say, “Oh no!” when her troop runs into something they can’t go over and can’t go under and have to go THROUGH!!! Then she screams along with the rest of us. It’s just the cutest thing. Everyone surprised me with this when I got home from Deaf Awareness Day.

Okay well we’re resting up today and both go back to work tomorrow.  The weekend  went by too fast.  What are the odds of a snow day tomorrow? :)

Second Surgery

Saturday, October 3rd, 2009

This surgery went a lot better in some ways and went a little worse in a few other ways. We knew what we were doing this time around. For instance when they call you back to wait for surgery and also when they call you back to hear how the surgery went, you go to this same dreary little room that’s poorly lit. So we always turn on all six of the x-ray light panels that take up an entire wall to see better. It really lifts the mood in the room when there’s lots of light. Of course when Charley went to take Laelia into surgery a nurse came by and asked why an entire wall of light panels were on when there were no x-rays to see. How do you explain to an all-business nurse that you’re all alone  and your baby has been taken to a scary surgery and you need the “feel good” lights? I just  shrugged and  smiled until she left.  :)

Once Laelia was out of surgery, instead of waiting around for them to call me and for  me to get lost somewhere like last time, I waited a little while and then marched over to the recovery area and said, “I’m here to see Laelia.” They said she hadn’t woken up yet and it’s against policy blah blah blah,  and I said, “I’ll wait here,” as I leaned over their desk and refused to move. Then I asked every 30 seconds to see my baby. It worked pretty fast.  Pretty soon afterwards I  was calling my husband and announcing, quite proud of myself, “I’m watching our daughter sleep. Squeaky wheel. Love you, bye!” :) I’m glad I was there because it took her a lot longer than normal to wake up. The doctor came by to check on her because she was still asleep past the 40 minutes after surgery. The doctor  told me something about how Laelia was probably still sleeping because she wasn’t scared and felt safe since I was there. That made me feel good since  I had been singing to her the whole time she slept (which was over an hour and a half), until I realized that that answer was most likely BS. But at least I was there watching her sleep and  knowing she was okay and alive. If I had had to wait in that waiting room for over an hour and a half of her  in a baby coma after surgery I would have freaked.  Even rock-steady Charley was starting to worry.

I noticed that she had wonderful vitals when  I sang to her. Actually once  I started to sing  her bedtime song to her  and her pulse started to race  like she was  agitated. I realized she never really liked that song because it signaled the end of play time and meant she would have to go to sleep by herself in her crib. So it was kindof eye-opening to see which songs she liked as she slept. There were obvious favorites. Her  pulse and blood pressure  couldn’t lie. :)

By the way, the nurses were so wonderful this time around. Our check-in nurse was giving us useful advice, making sure she spoke to Laelia’s kitty like he was the one getting surgery and even tested his stuffed vitals before testing Laelia’s, and she also told us about how to get free dinner and how to get information during the surgery. It was a much better experience when the people cared!

Laelia was doing better physically this time around  so they stuck her in a busy room with two other kids. One was screamy and whiny and getting her way an awful lot because she broke her arm and the whole family felt sorry for her. The other little girl was a total brat who bugged everyone from the nurses to the receptionist to other families and children, “Make your baby stop crying, I’m trying to heal over here!” This brat finally chased away her mom who slept in a different room and left her free to terrorize the nurses. She would page the receptionist all the time and order them around. She demanded ice cream and when they would bring her ice cream then she would demand a popsicle. Charley spent the night with Lali and they both got a total of three hours of sleep because of all this, which disrupted Laelia’s  recovery process quite a bit. Laelia was fussier than usual and totally sleep deprived. We wondered if the pain meds were working and went home with some stronger stuff just in case. If I had been there I would have asked for another room.

But other than that, only a few hours after surgery, Chelsea and Adam brought over Golden Spoon and Laelia asked for some. So I gave her a small bit and waited for her to spit it out. But she just demanded more and more and more! Her poor sore throat! But she was eating and talking and doing so much better than last time! Last time (only two weeks ago, but it feels like months ago) she didn’t say her first word until 9:00 PM and didn’t eat anything  until the next morning! But this time  she was eating frozen yogurt and a roll and a bite of turkey and  drinking a  ton of water.

Well the ton of water backfired because she wet her bed and her clothes and everything else. Changing a baby’s diaper is just so hard when that baby is in two casts with a bar between them. Not only that but she had surgery on her hips that are just bandaged. I’m going to need to buy some onesies since she can’t wear pants now either.

Once we  brought her  home she went to sleep for four hours! When we went to check on her we noticed that her toes were purple. So we called the doctor and rushed back into the hospital for an emergency cast fix. We were an emergency case so they rushed us through… which took two hours. I’m so glad her toes didn’t fall off! But other than that adventure, she did beautifully once she was at home and able to rest.

Oh and there was only one time when I went into a room I wasn’t suppose to. I was in the bathroom when they called us in to tell us how the surgery went. Charley went in with the nurse and disappeared. By the time I figured out where they went I had to muscle open a hospital-staff-only door, working against the mechanisms that would usually prevent entrance. I really don’t even blink when I do that stuff now. I have no shame. :)