Archive for March, 2012

Look Mom! No KAFOs!

Wednesday, March 28th, 2012


So yesterday afternoon I put Laelia on the potty and stepped out of the room to give her some privacy. A short time later Laelia starts screaming, “MAMA! MY LEGS! MY LEGS!!” I panicked and ran back as fast as I could. Visions of her falling off the toilet or twisting her leg filled my head. As my friend, Anna, put it, “Elapsed turnaround time to Mama freakout– .3 seconds.” :)  We have a chair placed in front of the toilet that her legs rest on so really there’s little chance of these horrors actually happening. It turned out she was just sitting there staring at her legs. I asked her what on earth was wrong and she said, “Nothing’s wrong, Mama. Look at my legs! They’re so straight and beautiful!” It was the first time she had just sat there (with her pants pulled down) and stared at her legs. It shocked her to see her body so straight! She used her hands to press one knee down (which flattened her leg against the chair) and said, “This one is very straight, see?” Then she pushed on the other knee and said, “This one is also very straight!” Then she sat there playfully rocking her feet back and forth in a happy little motion while starring at her legs. “They are beautiful. They are straight like yours Mama!”

The whole vain display was the most precious thing I’d ever seen. :) She simply cooed.

But later that night is the real story. Once again the scene takes place in the bathroom. It started out an accident. I’ve not been getting a lot of sleep lately as my husband is up every three or four hours and my daughter is up once or twice a night with AFO issues. Somehow miraculously that still leaves me around four or five glorious hours of sleep a night. But last night we were running late to bed and it was cutting into my precious sleep. I was exhausted but Laelia had not brushed her teeth yet. Like a zombie I carried her to the bathroom and stood her up as we usually do on the chair so she can reach the sink. She was fussier than usual so I kept an arm around her waist thinking she was just scared of the height or the wobbly chair (or… something… whatever… tired). Eventually she said, “Mama, are you holding me or am I standing?” And the sound of awe in her voice was just different enough for me to realize this was a big moment for her. I woke up enough to see that Laelia was not wearing her KAFOs (knee braces)!


I have never stood her up in only AFOs that way, especially not with the hardware in her poor knees. I simply hadn’t noticed! She was merely in AFOs which only stretch her feet and do NOT hold her knees in place! Good thing I didn’t let go! My arm immediately tightened around her waist with the realization.

Okay for one thing we did not think it was physically possible for Laelia to stand without knee braces because she’s missing the muscle in her legs to hold her up. Her knees have always buckled under the weight of her own body. Even when I thought of my girl walking around one day I saw her in knee braces. (I know adults with AMC who wear knee braces every day!) But she seemed pretty steady so I said, “Laelie sweetie, do you want me to let go?” She hesitantly said, “Slowly please.” So I lowered my hands to her hips and then slowly lifted my hands off her until she was standing by herself! And she just stood there frozen for the first time ever without knee braces. Whoa! I hovered over her worrying that her legs would buckle any minute. In fact bending her knees is still really uncomfortable for her (even though she can do it) so I was scared she would get tired or weak then fall and bend them and scream her head off. But after a solid minute of hovering Laelia slowly became unfrozen. She started to test out her legs a bit. Then she started to stand up even straighter (on her own!!!) instead of  draping  herself over the sink. She raised herself slowly all the way up until she could see her little face in the mirror. She then said, “Who’s that standing? Who’s that pretty girl? Hello Laelia!”  Hahahahahahahahahaha!

My funny girl!

My theory is that when her knees were bent at around 40 degrees it was really hard to stand up. (Try it yourself! It’s hard!) That bend takes so much more muscle! I take for granted the fact that I can lock my knees and just stand for long periods of time with ease. Now that Laelia’s knees are straighter (even though she’s still 10 degrees shy of perfectly straight) she can lock them in such a way to make standing easier. So with the same amount of muscle she does so much more with it!

I’m so thankful we switched from San Diego doctors who have a soft tissue approach (which would weaken her) to Dr. van Bosse who has a surgical approach based on moving/aligning the bones. AMC kids have such little muscle as it is, we don’t want to lose it! We went through a couple of soft tissue surgeries (with a surgeon who said he did not believe my daughter would walk) before finding Dr. van Bosse in Philadelphia. Dr. van Bosse immediately showed me how osteotomies would make her body align correctly. Because of his vast experience with kids with arthrogryposis I didn’t just have to take his word for it, I saw x-rays of kids whose lower bodies looked just like my daughter! Slowly we began to trust a doctor again. By the time knee surgery came up we were ready. And now she is beautiful and straight and functional. (And still very vain. ;))

So thankful!

Laelia inspires

Sunday, March 25th, 2012

I can’t imagine our lives without Laelia. For one thing I would not be as good a person. I would not be as patient. I would not be adopting a little one in a difficult situation. I would not have met the wonderful people who make up our AMC family. We would not be raising awareness for orphans overseas with AMC. I would not care as much about what happens outside of myself. I went from the broken mother who held Laelia in her arms and grieved deeply four years ago to someone amazed at how God has used this little girl to do great and mighty things.

Her daddy wouldn’t be as selfless. He would not be as good with children. He would not be as giving with his money. And he would have never considered going through something scary like surgery to save the lives of strangers.

Laelia is God’s gift to the world. All those surgeries weren’t for nothing. Laelia’s daddy had never gone through surgery before, and was scared of it, but knew if Laelia could do it then he could do it too. And he did.

Here’s the link to the story in the newspaper.

Here’s the link to the story on Channel 6.

Here’s the link to the story on KUSI News.

Here’s the link to the story on Channel 10.

Here’s the link to the story on Channel 8 (which is also embedded above).


The TV news stories take a few minutes to load.

And now a word from the IT dept.

Monday, March 19th, 2012

Charles here, with a sobering website update.

For the past 7 days, malicious code has been injected into the pages. We’re still not completely sure what caused this, but it’s now largely under control. If you visited the site in the last 7 days, you may have seen some pop-up window come up when you visited the site with something anti-virus related. If you clicked on that link, you may have unwittingly installed malware on your computer.

Here’s what this means for you:

  • If you’re using a different OS from Windows (Mac or Linux), you should be fine.
  • If you have an antivirus program installed that includes real-time scanning, you should be fine–the script would have been blocked–but you may want to run a full virus scan just in case.
  • If you don’t have real-time scanning on your antivirus software or don’t have any installed, you should install some and run a full scan. There are many places to go to get free antivirus software, but Avast is what we use, and we’re pretty happy with it.

I’m sorry this happened, and I’m especially sorry if you find yourself cleaning a malware infection out of your computer. I’m pretty sure you come to for updates on our darling daughter, not for a crash course in malware prevention. We may have some downtime over the next couple weeks as we try to clear out the last vestiges of this code; please be patient with us.

Three steps forward, one step back

Thursday, March 15th, 2012

So after our three hard days of evil AFO adjustment came our breakthrough: Laelia slept through the night and woke up without her face all scrunched up with pain. We relaxed and considered it a victory. The very next night Laelia slept a bit and then woke up screaming. For all our caution the shoes had caused a deep red mark on her left foot. She cried for twenty minutes after I removed the brace. I finally put her in a hot bath and the heat soothed the pain. She stayed in the bath for three hours begging me not to remove her. With a red mark that fierce I can’t put the AFO back on and I can’t tighten the straps. The orthetist can’t see us until Friday to adjust them either. Crap.

I put in mole skin and that helped a bit, but they still couldn’t be tightened. I really did not want to lose three days worth of pain, but didn’t want to make it worse. A friend on Facebook (thanks Martha!) suggested New Skin (the liquid bandaid) to put on the red marks to protect them from the brace. Apparently that’s what ballerinas use when their shoes are rubbing holes in their feet. It was worth a try. I called Rite Aid to see if they had some. They had it at the counter when I ran in. I explained that it was for my daughter’s braces and I’d never used it before. The gal ringing me up immediately tried to stop me from buying it! She said stuff like, “You don’t want this. This is like for burns and stuff. Let’s find something else.” And I was like, “That’s fine. This is what I want. I will… buy it… now… thank you?” Finally she said she would never put this in a child’s mouth and I realized our communication error. “No, it’s for the braces on her FEET, not on her TEETH!” We both laughed. Now that I’m back home and smelling this stuff I want to thank her even more. It’s strong, like an oil refinery. I scratched my face and it burned my eyes a little!  If this was going anywhere near a child’s mouth that would be abusive!

Thankfully the mole skin plus the liquid New Skin did the trick. She was able to wear her braces. I think the left side is a little loose because it’s hard to judge when you’ve packed it with mole skin, but hopefully it’s fine. I hate this stuff!

And just for the record this has nothing to do with her surgery. This has everything to do with her feet missing heel pads and having been severely clubbed at birth. The ankle foot orthotics (AFOs) are killer because we’re trying to avoid yet another surgery on her feet. Her knees are doing okay post plate insertion. She does not like to bend them though, and that’s probably good because we’re not suppose to work on bending them until they’re straighter. Still when she’s not in her protective KAFOs (that keep her knees straight and secure) then she will hold her breath when I pick her up because she’s worried I’ll do it wrong and bend those little knees. But she is standing again and taking steps (although not as many as in her casts), and she’s getting better everyday.

Well now that Laelia is feeling only a slight irritant instead of major pain, she has become only a slight irritant instead of a major pain. (Come on other mommies, back me up here.) One day I couldn’t take it anymore. She’s been acting out and whining a lot over silly things. Finally I called my husband and said, “I can’t take it anymore!” And I loaded Laelia in the car and we drove somewhere. Anywhere! Just needed to get out of the house. We drove to a fish store actually. Laelia wheeled herself all over the place and the whole time kept gasping and shouting out her discoveries. She loves fish. And yes I bought our family it’s first fish. ($4.99?!! Didn’t fish used to be 20 cents?!)

Meet Rocky!

Laelia’s eyes got wide at the thought of getting and naming her own fish. I was so proud of myself for thinking up a way to teach my child responsibility instead of just staying home and strangling her adorable, annoying little self. She promised to feed it and play with it and love it. We got it home and the first thing she did was pick up the container and start shaking it while loudly singing, “FISHY FISHY I GOT A FISHY!!!” She’s seen Finding Nemo so many times and yet has learned nothing from Darla apparently.

After explaining how to care for her fishy, we got it’s food out. Laelia had to finish all her dinner before she could feed the fish. (We had fish for dinner, is that wrong somehow?) Laelia gave it a few balls of fish food that were the size of dust particles before announcing, “This is boring! Can we feed him the entire bag? Can I play with him? Can we get another one?”



Thursday, March 15th, 2012

I just wanted to put this giveaway out there so that everyone could get a change to play. I blogged about it on Laelia’s brother’s blog here. Laelia’s arthrogryposis has put me in community with many other families affected by AMC. These dear people are as close as family. I care about them and want to support them. I haven’t known Laura long, but she became part of our group after adopting sweet little Landri who has arthrogryposis. As I’ve said before Landri’s parents can and do provide for their daughter. They can afford her special needs. They could even afford her adoption, but the attorneys fees and adoption agency fees were all triple what they were told they would be.  They are a few thousand short and need it before the end of this month.

My family (and extended family) put our heads together and decided to do a giveaway for them. We are contributing all the prizes. Right now we’re fully funded for our adoption, but I remember all too clearly the panic and worry that accompanies not having all the financial barriers down.

Right now there is barely anyone participating in the giveaway so your chances at winning are pretty high. Please consider helping us by going here and donating $5. Go here to donate. The need is urgent.

The first prize is a $100 gift card to Apple.

The second prize is a handmade stained glass heart (~6×6).

The third prize is the  sign language package: five children’s books from DawnSignPress, who is an American Sign Language publishing company.

The giveaway ends March 17th on Saint Patrick’s Day at noon. Winners will then be drawn and announced.

For every $5 you give to their adoption fund, your name will be entered into a drawing. If you leave them a little note after you donate saying you shared their link (This one –> on Facebook or Twitter or your blog then you get another chance at a drawing! (But you must first donate at least $5!)

Thanks so much if you can help. Even just $5 and a note to this family would help a ton. I know it did with us. Thank you.

Art Show!

Thursday, March 15th, 2012

 Laelia submitted some paintings to the  Park Gallery  Abilities Art Show before we left for Philly. The Park Gallery is run by our friends, but the Abilities Art Show was run by Ms. Wheelchair San Diego and Princess on Wheels. Many talented people with disabilities showed off their stuff. Laelia could not attend because of these stinking AFOs, but she did contribute her recent art as well as her (slightly wrinkled) painting she did with Theresa at the AMC national conference last year.

Deciding what goes with yellow.

“This one is called  Penguin Gets a Party.

Someone viewing Laelia’s pieces at the show.

Picture from last year’s painting session.

First thing Laelia asked after seeing her certificate was, “Can I color it?!!”


Adjustment following AFOs: Seven tricks

Sunday, March 11th, 2012

These are the things that make us quite blue.

Here they are now:  Pain One and Pain Two!

Laelia  got new braces this week. Now you’re probably wondering why that means we missed an art show at the Park Gallery (where Laelia was one of the artists), a birthday party, church  and a couple of promised  trips to the zoo. Let me explain.

There’s nothing I dislike more than painful ankle foot orthotics (AFOs). My husband and I have considered surgery over  using AFOs (not a good idea by the way)  and had our worst parenting experiences following getting new AFOs.  Dark times.

We have been through this before, but that only makes it marginally easier. When you’re looking at getting casts off and seeing your darling child’s legs again all you think about is bath time and putting them in real pants. What no one seems to warn you about is that you’re in for pain. New AFOs that are really doing their job WILL make your child weep in agony. (My first experience with AFOs when Laelia was a bitty baby went something like this.)  This time we at least knew what we would be looking at.  Still we got our hopes up just a bit that it would be easier now that Laelia was older. It wasn’t.

When I was  younger I would get  the braces on my teeth adjusted and they’d hurt. It was done after school and all I could have for dinner  a few hours later was  aspirin. Sometimes I couldn’t sleep. And I was one whiny teenager during those first two days  following an  adjustment.  AFO pain is suppose to be comparable with that, only with a little kid who could probably out-complain someone who was just hit by a bus.

(Speaking of, Laelia scared me to death when she started to scream her head off in the middle of the night. It turned out  she was frustrated with the volume control for her movie. Of course everything is major when you’re in discomfort, but still.  I gave her a stern look and asked her, “When are you allowed to scream like that?” She hung her head and guiltily replied in her little voice, “Only when I’m on fire or being eaten by a bear.” That’s right!)

So how do we get through new AFOs? There are some tips and tricks.

#1. Send husband far, far away.  My super wonderful husband  is mush when his daughter cries. Plus he works two jobs to support us and our adoption and needs the sleep. (Plus I have a personal theory that hardship makes women stronger and reduces men to tiny, helpless children. *ahem*)

#2. Remember it always takes three days with AFOs. After three days life gets normal again. Keep your eye on the goal. You can do almost anything for three days, right? Plan on getting no sleep for those nights and treat it like having the flu. Call in sick and hunker down for some hard times.

#3. The trick is to  not ease up on the dorsiflexion  straps. Loosening the straps leads to a month of this and this. I’m serious. It also leads to months of whining about loosening the already loosened straps. This is the first time in our child’s life that I have not loosened the straps. I always have caved on this point in the past. (What can I say?! I’m weak!!) Don’t do it!

#4.  Medicate the kid. Now when it comes to medication I always hesitate. I hate “unnatural” things in my body, even when they’re good things. And being a first time mom I have been scared to put anything into my precious daughter’s system, especially when she already has to have meds after surgery. But medicine  takes the edge off. So this is the very first time I actively asked for a prescription for pain meds before starting this new AFO process. It made me feel icky, but I’m glad I did it. It helps on  a physical level and also on a psychological level. When Laelia knew she was taking the pain meds she started feeling  better. When we hid them in her food she only felt marginally better.

#5.  Take the AFOs  off and check the skin.  I know it’s hard to even look at these things let alone touch them. And yes your child will scream while you remove them and then scream louder when you put them back on. But you need  to check for redness, “work” the straps and change sweaty socks.  Wet socks  lead to  skin breakdown (click on that link only if you want to see bloody pictures of my child’s foot). Then you put those braces right back on  without loosening them! Stay  strong through the begging and pleading and shaking. (Kick your husband out AGAIN when he comes to make sure his daughter is not on fire.)

#6. Be super mom. It was hell the first two nights and  we got next to no sleep. We watched kid’s shows all night while I rubbed her back and legs and the tops of her feet with the braces on.  Hour after hour after hour. She cried and whined a lot. I had to sometimes leave the room to go punch a pillow and cry before coming back to her. (A crying child does not always result in sympathy, but instead you just want them to stop!) But I always  let her know I’m in this thing too. I stayed firm about  not loosening or taking off her shoes until she finally (30 hours later) stopped asking. We got through it together.

#7. Don’t loosen the straps.  Did I mention that already? :)  Some say to work up to the lines, meaning start out with them loose and work up to full tightness, but don’t ever start tight and loosen! Not worth it. (For the record, we didn’t do that. We started with them on the lines and stayed there. That way it would be really hard for three days instead of a little less hard for a week or two. Last time an ulcer developed. Then you back off. We were lucky this time.)

The pay off:  Last night (day three) she complained when I put on the straps but  then she slept for 14 hours straight with those braces on. She woke up saying that the pain meds had worked and  her feet  didn’t hurt. She has finally adjusted. And her feet, although a bit red in places,  look beautiful and have more range of motion.

Yay! Ugh. Now what day is it? *collapses*

See you in six months!

Thursday, March 8th, 2012

It doesn’t matter how ready I am or how many business cards I hand out explaining  Laelia’s condition, people will still look at a girl in full leg casts and ask how  we broke both her legs. And that’s if they’re nice. Most whisper in vicious tones to each other loud enough for us to hear as we stroll past. On our way back from our surgery trip last month a flight attendant guy asked, “How did you guys end up  doing both legs?!!” I guess he was pointing out it would be hard for a four year old to do it alone and her parents must have helped push her off the cliff. Most just say, “Poor thing,” as they walk past. I hate that most.

But I found the best way to avoid all the drama and have some great laughs and conversations. I simply wrote “skydiving accident” on her shirt.

I got lots of laughs and lots of random people coming up to us saying they liked her shirt. Only one lady actually asked me, “Was she really in a skydiving accident?!!” It was great. :) After the shared laugh I would just say, “She has an orthopedic condition,” and it was enough. No more strangers’ nasty comments, and even  the shared whispers behind our backs were light-hearted. My favorite: the “poor little thing” people added, “skydiving is rough for anyone.”   :)

Sunday everything went wrong that could have gone wrong. We got to the airport and realized we only had parts of Laelia’s wheelchair. Charley did a mad dash back home as we checked into our flight. They held  the plane  for us. We made it with one minute to spare. It was super stressful and wouldn’t be the end of the stress. In every flight we had that day we displaced someone from their seat who was not happy with us. We had no idea that because of Laelia’s casted, unbendable legs we were required to put her in a window seat in case of emergency. No one likes to give up the window seat  we came to find out. One guy refused to talk to us even when I was thanking him for moving and offering him my free television. (Later he paid for  Laelia’s milk we found out. Apparently  he got over it!)  We landed and ran to our next plane. We boarded quickly and then sat on it for over an hour and a half as they did maintenance. The power went out and it was a little scary. Finally we were up in the air, but some people would miss their connecting flights including us. (Remember these trips are three plane affairs for us.)

During the second flight Laelia announces that she has to go potty. Of course if the plane had left on time she wouldn’t have had to go on the plane in full leg casts. I gently carried her in there, but her legs were hanging off the potty and we both didn’t fit and I bumped her head and her right leg. And she ended up being in pain and screaming for a solid twenty minutes, holding up the line. She didn’t even go potty. Lots of angry looks later we landed. The flight attendent told me that if I missed our window to get to the RMDH that maybe the airline would put us up in Milwakee. I explained that then I would miss her doctor’s appointment.  I got in the line to learn my fate and  was standing behind a family who was put on flights to Philly that would arrive at 10:30 pm. They were told they were lucky since it was the last flight they could book. My stomach was in knots because if we arrived that late we couldn’t stay at the RMDH.

(Oh speaking of the RMDH I called during this time to make sure we had a room and was told we were not on the list! Lots of stressing later they ended up finding us a place to stay, but only if we arrived by 8:00pm! Now it looked like we wouldn’t make it there!)

Well it turned out they had room on a plane for two people but it took off in 30 minutes and was with a different airline! We had to run out of the airport and then re-enter with US Airlines and do security all over again. (Where they separated me from my daughter, which made me crazy and I complained loudly until we were reunited. Not cool TSA.) We barely made that flight before the doors closed. And then we sat there as it turned out the plane was covered in ice. (I nervously counted every minute.) They sprayed it down for a while before we could get out of there. I called RMDH when we landed and said we would arrive after they closed. They said they would wait 30 minutes longer (until 8:30) only because they had a volunteer willing to wait. But they just could not wait any longer than that. Of course we exited the plane and discovered that Laelia’s wheelchair was missing. (Of course.)  We were the only ones on the plane with the cleaning crew before they found it and brought it up to us. Then we raced to get our luggage only to discover it was lost. (Not joking.) Not just left behind, but not in their system. I explained that we had been on three different airplanes and two different airlines today and they explained that it would be a miracle to get us our luggage. That’s when it hit me, besides all of our clothes and coats and toiletries, Laelia’s medication is in that bag! Ugh. So we filled out our paperwork for missing luggage and raced to the shuttles for Thrifty Car Rental.

The shuttle didn’t show up and the security guard hadn’t seen it in a while so he  suggested we take a taxi over to the rental place. Just as we were about to do that he comes running after us to tell us the shuttle finally came. We made it to the rental car place, but they left us on the shuttle! (I’m still not joking.)  The guy driving got out to help some VIP members get settled and didn’t come back. I couldn’t operate the wheelchair lift myself and kept waving that we were on the shuttle and no one came back. I got on the intercom equipment but couldn’t figure out how that worked either. Just as I was about to start honking the horn wildly the driver came back. No word. No apology. Just worked the equipment as I stood there in tears. We ran in the building to a long line. Oh no. RMDH had just closed for the night, but we still had that 30 minutes they offered us.  I cut in line and asked to speak to a manager. (I knew three managers’ names and was ready to demand them ALL in a minute.)  He helped us get our rental car  since we already had a reservation. Then when we got out there our rental car seat was too small, not in there properly and would not adjust easily. And it was against the law for him to help me with it.  I fought and silently  cussed at it in the cold as Laelia (as she’d been doing this entire trip) whined. I looked at her and said (I thought very calmly), “Not another sound Laelia.” Then  I finally got it in there, adjusted it  and  put Laelia in there when  the ridiculous harness pinched her. The thing was total and complete crap. Then I raced to the RMDH. Half way there my daughter asks, “Can I talk again now?” I had forgotten I said that! What a good girl she is! I was stressed out of my head, but managed to sing Old McDonald Had a Farm the rest of the way there with her as she laughed. (And on his farm he had a bridge! Bridge?!! Hahahaha!)  We arrived at 8:31pm.

Now they didn’t have to let us in the building. They have a strict rule we were breaking by coming so late. There were security issues involved here. But they saw how broken we were and how tired (and heard about everything that happened) and  in their way the RMDH made it all better. Laelia had a rough day, but they handed her the most gorgeous Ariel the Little Mermaid doll in the world. It’s part of a wonderful  collection we had seen in Disneyland and we wanted one so much!  She cuddled and kissed it and was the happiest little child ever. (“This is the best day ever,  Mama!”) We checked in and had our first real meal  of  the day. It took a while to calm down from all of that, plus we had to get toothbrushes, a pair of pants for Laelia for after cast removal the next day  as well as other things (like a ton of Pull Ups). We finally got down at midnight.

Laelia also developed a sty on her right eye. Ugh.

At 2:00 am we heard pounding on our door. I quickly got dressed (through the pounding) and answered. They had our luggage, but I had to get all the way dressed and go down the elevator and  outside in the cold to sign for it. I grabbed shoes and with no coat  ran to sign for my bag. So we were now fully awake. I  had Laelia’s medicine that I put in her cup and was thankful at least that I could shower and put on clean clothes. (What I shouldn’t have done is dig through my suitcase so messily. That would come back to bite me later.)

Our appointment was at 10:30am, but we probably only got four hours of sleep (and not in a row) after a long, stressful day/night. We ended up waiting for five hours to see the doctor. We fell asleep on the table waiting for the KAFOs to be adjusted. We got out of there at 6:30pm and missed dinner at RMDH where we were hoping to meet up with more AMC families. (There were about ten other families with AMC there. Just further proof that this is AMC mecca. It’s so wonderful to see all these kids through the years. I now believe completely that every child with AMC, no matter how affected will achieve ambulation!) We went straight to Rite Aid to get Laelia’s pain prescription, but they had trouble with our insurance card.  We got back to the house around 8:00pm when I discovered that they had NOT included a doser for measuring out the 7.5 milliliters.  A RMDH volunteer went out to the store and bought one for us while we ate leftovers from the meal. She refused to tell me the cost. It took over twenty minutes to get Laelia to take her darn medicine, but once in her I could tell things were going to get better.

When we got back up to our room it was  clear someone had been in our room because I only locked the deadbolt before we left and now the door handle was locked. I walked in to find  a notice that said there  had been an inspection and  I needed to clean up my room.  I felt completely violated. I wanted to crawl into bed, but Laelia had just had her casts removed (which she screamed through) and needed a real bath after  a month. I put her in the tub and she soaked while I cleaned up the room, most of which were things I had thrown out of my suitcase to run out the door. We had to refill the tub and clean out the dead skin four different times. I gently rubbed her legs over the scars and sensitive skin until my back could not lean over that bathtub anymore. Then once she was out I scrubbed the whole tub. We fell into bed around 11:00pm. I couldn’t breathe and my throat was sore. It was official; I was getting sick. My back was also pretty sore. Laelia told me she was sorry I felt bad. This child had just come out of casts and her legs were throbbing, but she was being empathetic. She’s a sweet little soul. She cuddled up with Ariel and tried to sleep for about an hour before I let her watch Snow White instead.

They weren’t able to do all the work on her braces on Monday so now Tuesday they had to have us back in. No problem we’d just stop by before or after our scheduled PT appointment. “What PT appointment?” I was asked.  That’s right, scheduling had forgotten to put us in the schedule. (Mariann was on jury duty we found out later so couldn’t fix it.) Without PT we couldn’t measure and work out the lift for Laelia’s shoe that we needed because of her pronounced leg difference now that her legs were straighter. Plus we couldn’t come back a different day because we  would fly  out the next day! It was a mess. I had to wake up early to call the hospital and then they called me back to come in. When we got in, the front desk/security people didn’t know we had an appointment and it took forty minutes to convince them to let us up. We were late for the appointment. We raced through it. Oh and before any of this on our way from the  parking garage to the main floor of the hospital the elevator started to shake violently. I thought, “Just great. Philly is finally going to kill us.”

During our long wait I started chatting up the front desk lady. I asked  if she had people pointing out the error in the artwork above her head all the time. I guess not!  I notice this like every time! Anyone else? (I had to get Laelia’s crutches out to show her how they work.)

Notice the pediatric crutches?

He’s gripping invisible hand grips. Nothing is holding this boy up!

When we finally saw the doctor that we do all this to see we  talking about his newborn and my adoption and conference and fun things. Finally  he said, “I guess I’ll see you in six months. Or whenever you can work out getting both your  kids  here.” Now if you don’t know  our history, our journey with Laelia started out with every doctor saying there was nothing they could do and finishing up our disappointing visits with, “See you in six months.” I have hated, “See you in six months,” for that very reason. But when  Dr.  van Bosse said that, it was because Laelia was walking and looking great. He said that because he had fixed Laelia’s legs. A few degrees in the knees would be smoothed out as the 8 plates did their job, but she was within ten degrees and looking beautiful! She was  ambulatory!

I refrained from hugging him and sobbing. For the first time in my daughter’s life I was  thrilled to hear, “See you in six months.” (Plus I would not mind avoiding Philadelphia for a while…)

Notice the leg difference and the white lift on her shoe?

Straight legs, feet and hips.

The legs, feet and hips she was born with.

We got  home late last night. I have had  a nose bleed off and on for  the last 24 hours.  I’m also  battling a cold. Laelia wet through her Pull Up and her  pants and onto the plane seat on our second flight yesterday. Without a change of pants I just sat her on papertowels for the flight to Denver. Then it turned out we had no time between flights. We landed at 5:50 and the next flight boarded at 5:30. Really?!!! We got off the plane twenty minutes late for the next! We had to fly home in the same wet pants because of that. Then my husband showed up in a clown car (aka his VW Beetle) because he forgot he would need my car to fit everything. But we did finally fit everything including Laelia’s wheelchair, our luggage and ourselves.  (The VW Beetle is a stupid car.)  A security personel yelled at us for taking so long. Finally we were about to take off and Laelia says in her sing-song voice, “Um, I think you’re forgetting something…” We hadn’t buckled her into her car seat.  We laughed the whole way home.  It’s been a looooooooong three days. Thankfully it was so insane that it was bearable. I think if   just a few of those bad things had happened then I would be livid, but so many things happened that I had to just laugh and  treat it like some divine test. We made it. We survived. And now we gear up for Charley’s surgery. At least his is right down the street. I’m hoping we’re all healthy by then.


After every surgery you should get a trip to Disneyland

Thursday, March 1st, 2012

So we promised Laelia a trip to Disneyland after this last surgery. Her school had a planned field trip to Sea World that she couldn’t attend so we took her to Disneyland on that day instead. It would be the last opportunity to go anywhere as a family before we fly back to Philly in a few days and come home to Charley’s kidney surgery on March 20th. But little did we know it would rain and be cold! And we couldn’t get casts wet! And the adventures were endless!

Yes that’s water we’re walking through.

Disneyland was pretty gorgeous in the rain, and mostly empty because of it. Here are the ticket booths.

We wrapped Laelia’s casts up in platic wrap.

A nice family saw us wrapping with our kitchen plastic wrap and offered us their plastic rain coat for Laelia! So nice!

She was THRILLED to meet Micky!

She was less thrilled to meet Jake (from Disney Channel we found out later).

The wheelchair car at the Little Mermaid ride was a PAIN for the cast members since we would disembark only to get right back in line.  No one else was waiting for the “handicap  car” so finally after getting back in line so many times they just let us ride endlessly without getting out. We went five more times. (Laelia’s parents were less than thrilled  about it. Laelia was over the moon!)

By the way if you ask a cast member Little Mermaid trivia, they do pretty well!

The girls. We’re cold.

It’s a Small World and it’s raining on us.

Waiting to see Crush.


Crush the Turtle spoke with Laelia! Her question was, “Can you take off your shell? Because that would be cool.” To which he responded that he had never tried. So  he then  attempted it three times to the laughs of the audience. Nope, sea turtles can neither take it off nor put their heads inside. When Crush asked her name she said it very clearly, “LAY lee uh.” He renamed her “Longboarding Laelia.” (I know medical professionals who have botched my child’s name. Then a computer generated turtle hit it right on the money!) He asked how old she was and she told him, “I’m four.” She was so mature about the whole thing! Other people in the audience were whispering how impressed they were. Then when it was over she gave this self-satisfied smile and said, “I talked with Crush and did my best not to be shy.” Awwwwwwwwwww!!!

Disneyland you are still magical.

If not freezing cold and rainy. ;)