Archive for the 'sick' Category

Hard times are rare, but unusually hard

Thursday, February 27th, 2014

 

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So I never blog anymore. Mostly because I’m living more adventures than I have time to write out.

The last two weeks have been nutso. But even though I started this blog to write out my hard times and get perspective, I’m writing today with great news!

Raymond has a family! A family! A family! Raymond has a family! Tra la la la la!

Raymond is this guy, an orphan on Reece’s Rainbow, and I’ve been advocating for him for about three years. He was the focus of Bring Hope, a blog I co-author. He was the focus of Grafted Branch, a .org my husband and I run. He’s been the focus of many blogs of mine. He has also had a spot on the sidebar of this blog for many years. He’s there now. :)

One of my friends wrote to tell me that she and her husband were interested in adopting Raymond out of that orphanage he’s in, but a lot of logistics were in the way. I thought they would be the perfect family for him, but I’ve had people interested in my other kids I advocate for and the majority of the time it doesn’t work out for various reasons. But they worked out their logistics and committed to Raymond! (Stacy you are the best mom ever! So excited for you!)

And that has nothing to do with me, but it changed the direction I was heading in. I had stopped praying several months back. I’d send up an occasional weak prayer, but it was empty. So hard to pray when you know that little boy is wasting away month after month with no end in sight and we can’t adopt him right now. I had felt this complete disconnect. And Raymond’s circumstances had a lot to do with that. The morning I received the news from several friends (who get up before I do) that Raymond had a family was the first day I was able to pray again. I was praying and crying as I emailed Stacy to ask if it was her (it was). I just gushed out my thankfulness to God for this one little life soon to be saved.

Life has been hard the last weeks for our family. Unusually so.

Laelia had her 8 plate removal surgery on February 12th. This was suppose to be a). an easy surgery and b). her last big surgery for a while. Neither would end up being true. The whole family flew to Philly since Roland also had his appointment. (He’s looking at 8 plate and external fixator surgery about a year and a half from now.) During Laelia’s surgery while we were playing with Roland on the 6th floor I got a call that they couldn’t bend Laelia’s legs once the plates were removed. That wasn’t good. So they wanted permission to put a pain block in and do a more aggressive surgery. I ran to the 3rd floor to sign the paperwork. They did several releases in her thighs to get those knees bent. It wasn’t that successful and it made recovery a bit harder. When she woke up she had troubles breathing which is rare for her. I spent the whole day bent over her until my back was sore. That night my huband stayed the night and I took Roland back to the Ronald McDonald House where we finally (after being turned away to a hotel initially) got to stay.

Then a blizzard hit.

Public transportation was down, roads were closed… It was one of the most stressful things I’ve ever gone through–being five minutes down the road from my post-op baby and no way to physically get to her. Finally, after taking great pity on me, the staff at RMDH got James, their shuttle driver, to make a trip once it was safe. It turned out a family at the hospital were desperate to get back and I was desperate to get there so he’d make that one trip. Then we’d be stuck at the hospital indefinitely. Well long story short, the family desperate to get back was my family, Charles and Laelia. The hospital worked out an early discharge and they were on their way. (If they hadn’t figured out we were the same family it would have been terrible to have swapped positions but still be separated!) Laelia was sore and cold but once she was back in my arms she was going to be okay. Another storm was coming, but we could beat it and fly out before it hit. So that was the plan but the night before our flight home she threw up all that night. Then she threw up 12 times on our planes home. We thought it was from the anesthesia, but it turned out to be a virus that had broken out in the hospital. So after two days with no sleep and a cross-country experience I’ll never forget we got a ride home (thanks Debra!) and then got in our car and drove straight to the ER. Laelia threw up violently in the ER parking garage. But they put her on some meds and that was the last time she got that sick.

Until my husband started throwing up.

And then I got a really bad cold and I couldn’t breath, but throwing up trumps a bad cold so I was still the single parent and taking care of my husband.  But my cold was awful and the sinus headaches kept me from sleeping. When Laelia was done throwing up she had lots of complains about potty time. Turns out she had a bladder infection, which involved another doctor and another medication in the middle of everything. So she’s been sleeping with a towel under her at night because the bladder infection makes her feel like she has to go all the time.

So I was putting that darn towel under my daughter and stupid me decided to just pick her up and move her onto it… while bent over her… while twisted a funny way. I blame the complete lack of sleep for my idiotic move there. She weighs like 50 pounds of dead weight by the way. Yeah I completely threw out my back… which not only kept me up all night in pain, but required two out-of-pocket trips to the chiropractor and put me out of commission for things like dishes, doing the kids’ stretches, walking, bending over, etc. That put a lot of strain on my husband for several days. And just when my back felt better I got another different cold, this one with mucus. Seriously.

So that’s where we’ve been. In Stressville. So why am I smiling like a crazy person and jumping (awkwardly because of my back) for joy? Because Raymond has a family coming for him. I have a major headache while my son is shaking a bottle of Tylenol right by my head like a maraca. And Raymond has a family. I’m coughing so hard I accidentally peed. But Raymond has a family. I leaned over to grab a toy off the ground and was not able to stand up again. Well, Raymond has a family. I haven’t slept in weeks. But Raymond will soon have a safe place to sleep under the roof of his family. My hair looks like this.

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But Raymond has a family. ;)

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Raymond

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Flying to Philly

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Laelia and Roland at the RMDH

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Roland’s friend Luke at RMDH (whom Roland calls “Mylukey”)

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The Please Touch museum in Philly

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Motorcycle at the museum

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Bakery at museum

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Hospital at museum where Laelia had the most correct medical knowledge and vocab of any of the kids there.

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Waking up after not much sleep (it was 3am our time) for Laelia’s early morning surgery.

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Waiting for surgery

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Roland waiting for surgery… in the toy room :)

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Going into surgery

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Laelia waking up from surgery looking like she has princess hair. My daughter is magic.

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Snow plows excited my son like nothing else.

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Snowpocalypse!

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Back at the RMDH after surgery

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Mean mommy made Laelia do the required homework.

The next day was Valentine’s Day. These are the cards I got:
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Yeah, Roland wrote his to the bus. :-/

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While we were snowed in Roland and I took down the snow decorations and put up Valentine’s day ones.

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We hated snow at this point. Trash it, Son!

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Laelia standing that night without braces! (Later that night she started to throw up.)

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Flying home while sick was hell.

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Laelia at the ER here in San Diego. She’s still wearing her flight wings.

 

The hard times and the good

Tuesday, September 18th, 2012

Peek-a-boo!

Today was the day I was going to write about my son’s one month home. He’s been with us one month. I have so many pictures of this trouble-maker, you have no idea. And videos. And accomplishments. And joy. And love. And a high number of just his finger. (Stop pointing at the camera, my love, and keep doing the cute thing you were doing. I give up. Cameras are too cool and must be pointed at.)

But life is happening and it’s too much to find the time to write. I will share–believe me these picture demand to be shared–but not until next week. I hope next week. After we’re back home from medical travels. (Oh I’m not looking forward to having Mr.  Trauma  back on a plane. God help us.)

You see today is hard. Today my husband is sick. Today we missed the school bus. Today Roland has an appointment to get casts and we’re going to the appointment but refusing the casts… again… because our son is not ready. Tomorrow we fly to Philadelphia and Delaware for medical treatment for both kids. We arrive so late that we can’t get into the three Ronald McDonald Houses and must get a hotel. Today I called the rental car company and found out our reservation wasn’t put in. Today I feel defeated, busy and stressed.

But where my focus really is, even if it shouldn’t be, is that today is the last day of work for me. I had to leave my career. It was work-from-home, but my position required coming into the office for some much-needed meetings, and I just can’t. I don’t know when I could as my little one learns he is safe and that we won’t leave him. My family demands so much right now. I was pulling all-nighters to get my work done. Leaving my job to care for my family has made me feel like the biggest quitter ever. Six years I put into my company. Six years. I won’t even have more free time if I do this, just a couple more hours sleep a night… when Roland lets me. Oh and I’m good at what I do. I get a sense of self from what I do. A sense of pride. And we rely on my income. I don’t know what we’re going to do, although I know we have a few months to figure it out. Today is hard. Not just because I have a ton of work to do for my company before I leave everything in other’s hands, but because this was my life. The life I liked.

“If this life I lose I will follow you.”

This life is a blip. A blip. One tiny speck on our timeline of eternity. In that perspective it’s easy to lose this life to gain so much more. Is my son worth it? Damn right he is. Damn right.

(Yep cussing on the blog. First clue that I’m overly emotional.)

And I haven’t packed for Philly yet. In fact (shocker) I haven’t unpacked from Ukraine yet. Heh.

So instead of writing about all the joys of the first month, I’m going to leave you with some of the beauty in the pain.

I’ve talked a lot about the first three days of non-stop, mindless screaming from our new little son. (It helps that I’ve spoken with another family who adopted out of his orphanage and some of my  suspicions  were supported.) That was hard. But by day four, I don’t know, I was filled with love for this screamer. It could have been the wonderful prescription medication I was on, but something was different that day. We had just settled into the uncomfortable knowledge that this could be our life now. It could be our life for months or years. And we needed to function despite that. It’s scary when after three days you have no light at the end of the tunnel. Three days is long when your child is screaming at top volume, but it’s longer when you don’t know if it’s just three days or a lifetime.

Want to see a glimpse of day four? Turn your volume down and click here. By day four I loved this little boy. By day four his screams were not high-pitched anymore, and he seemed to be asking for comfort instead of reacting to an unseen terror. I held him on the couch after not showering or brushing my hair or teeth for three days. I held him and whispered love to him. I was able to smile–a small miracle. My husband took a video. We wanted to capture daily life.

Then, and I cry as I remember this, then this happened: This. For the first time ever he came back to us. Back out of the world he was in. I can’t describe how for three days his eyes were just blank, unfocused. Then he started to make eye contact. Then he didn’t thrash when I touched his face. He came back. He came back.

And he made kissy faces. “More kisses mom. Yep right there on my forehead. Perfect.”

When I wrote the blog post about (not) living happily ever after, I was being very honest. I thought maybe people would not want to adopt after reading how we were adjusting. Then THREE people emailed me after that and said that they read the post and were definitely going to adopt. One started the process. Another picked an agency. A third is definitely, seriously considering it a few years down the road. Wow. Wow. Really guys? After I post about screaming? Welcome my fellow crazies! Haha!

They get it; it’s about people.

Now do me a favor and click here. Read  this story and then you can tell me that we’re all crazy. (We won’t argue.) Go ahead. I read that link and cried my eyes out. It speaks truth to me. It lets me know I’m not a freak show for wanting to go back and get another one, or support others getting theirs even though I know it’s so hard. Just read it. (Despite the amazing support we’ve received, we still have the same crowd mentioned in the story.) Do me a favor and just read it. I didn’t write it, but we sure lived it.

See you in a week, friends. Hold onto this promise from me, incredible joyful stories are coming. Just give us one more week or so of hard. Pray for us.

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.

 

The cough that prayer cured.

Monday, February 6th, 2012

Future Doctor

We are back from Philadelphia with a princess in full leg casts. For those of you following  the story, our daughter had surgery on both knees to try and straighten them. (Because of her arthrogryposis her knees are stuck in a bent position.)  They did some releases in the back of her knees to straighten them as much as the contractures would allow, then they inserted eight plates into the fronts of her knees to stop them from growing. That way when the back of her knees grow, but the front of her knees don’t, it will straighten the knees over time.

As most of you already  know we almost didn’t have surgery last Wednesday. In fact we were ready to go home every day we were there. And people were praying. Lots of people. And everything worked out. But it worked out in this miraculous way.

When I was a little girl I read this boring  biography of Hudson Taylor. (Note:  NOT boring if you’re  NOT  ten years old and it’s NOT required reading.) He’s the guy  who prayed a lot and God provided, often last second or in a way that would make a good movie.  Our last week seemed like that.

For reasons we cannot share yet, we needed this surgey to happen now. We had no idea what God was doing by delaying it. From all we knew it couldn’t be delayed or a lot of things would go wrong. So all we could do was pray this was happening for some great reason half the time and  beg the surgery would  just  please work out the other half of the time. You see our daughter had a cough.

Thursday night I was lifting Laelia by her stomach and she coughed. But it wasn’t just one cough. It was a coughing trip. I thought I had squeezed the wind out of her or something. Then she finally said, “I just coughed like So-and-so at school!” Needless to say I yanked Laelia out of school the next day, cancelled the bus and mailed the form I was suppose to send with her that day. She had a very slight, occasional yet persistent cough all day.

Our good friends  have a  son who has the same condition as our daughter  and who also fly the same 3,000 miles to the same doctor in Philadelphia. He  had a cough once before surgery. He was fine and then the night before coughed just a couple times before surgery. That was all it took and his family was sent home to California. One slight cough and surgery was cancelled. Now Laelia had one slight cough. This was bad.

Saturday morning I called up Shriners to break the coughing news. Turns out I needed to run this by the anesthesiologist but  they weren’t  in on the weekends. I talked to a few people, was transferred six times, and finally the on call/charge nurse said to come on over. 3,000 miles and three airplanes over. So we did. And we prayed.

Sunday morning rolled around and we boarded  three planes with  the coughing monster.  The weather had changed and we  had hoped it was just allergies. She never had a runny nose or watery eyes or upset stomach or fever or  sore throat or anything else. And she would be happy and hyper and fine and then once an hour double over and cough her head off. And it was a cough with a little something going on. Not a dry one. But still I’d forget about it until she’d do it!

Monday our appointment was at 2:00, but everything at the clinic ran late and  we didn’t end up seeing anyone for three hours. Three hours! Finally we saw the doctor, his fellow  and the nurses and told them in person about the cough. I guess no one I had spoken with on Saturday had passed the word along.  At first the surgery was cancelled, and we started  making alternative plans (that sucked). The nurse coordinator outright told us  Laelia would  not be getting surgery. It looked like Laelia and I would  have to live in Philly for several weeks at one point.  But they had to get the anesthesiologist involved for the final determination.  Being after hours (now almost 6:00 pm),  we had to come back the next day when he’d be around. So in other words, because of our late appointment we had one more night  for the cough to get better.

And it didn’t.

So Tuesday morning she woke up coughing this horrible cough. She saw the anesthesiologist with the cough and he had her cough several times while listening to her chest. She was borderline with no other symptoms and even though we could hear something in the cough, they couldn’t hear it when listening to her chest. He had to pass us along to the head anesthesiologist who would make the determination on whether or not we’d be having surgery. Right before we met with him she coughed this wet, awful cough.  We planned to  pack our bags  home that  afternoon and try to get flights back that evening.

Then  we met with the head honcho anesthesiologist.  He asked her to cough. She didn’t want to. He asked her again. She coughed for him. And it was this beautiful dry cough. Then another beautiful, dry cough at his request. Then another!  She didn’t cough again through our entire appointment with him, including a trip to the PICU for surgery instructions. I thought she was cured! It was a miracle!

As soon as  we left the hospital she  started back up coughing again. It was like everything she’d experienced for days was just put on hold until she could pick it back up again when  we left.  The same ugly cough was back! Surgery was scheduled for the next morning at 6:30 a.m. She  had one more night  to stop coughing or it would be cancelled. But at least we were no longer going home that night. We held out hope it would just go away. Maybe she would stop coughing!

Of course she kept coughing. She coughed all night. I couldn’t give her  allergy meds  since we may have surgery the next morning. I just waited it out with her and held her hand. I didn’t even know if I should prep her for surgery and scare her needlessly.

I had a very small panic attack that night which defied logic because I was ready to go home and at peace  with surgery being cancelled. My panic  was obviously  not listening to how rational and peaceful I was. Charley noticed I wasn’t breathing and his reaction to that was to hug/smother me. I’m lucky  to be  alive. :)

(Note: I’ve never had a panic attack in my entire life. I think this was brought on by being woken up in the middle of a nightmare about not breathing and then my heart was already racing so fast it was just downhill from there.)

We arrived at the hospital  at 6:30  sharp (3:30 a.m. California time) and she coughed in the waiting room. Once again I mentally packed my bags thinking we were going home.

Then she coughed up the elevator and through her dress change and during her vital checks. In fact she coughed up until the anesthesiologist entered the room. Then she was fine, as if she’d never had a cough in her life. And it was his decision to proceed with surgery after checking her chest for the tenth time.

It was like something out of a movie. If I had reached the right person who told me to stay home when I called Saturday night there would be no surgery. If our appointment had not been three hours late and I’d met with someone who listened to that awful cough on Monday there would have been no surgery. If she had coughed during our Tuesday appointment with the head anesthesiologist there would have been no surgery. If she had coughed during OR prep for the anesthesiologist’s final check then no surgery.  When it really mattered, she became a perfectly healthy kid. But the rest of the time she was coughing!

Surgery went well. She opted not to have the knock-out meds and waved goodbye with such bravery  as they wheeled her  into the OR. She admitted she got scared and cried when they put the mask on her face, but overall she  was very good.

Back in the waiting room  I let out a breath I’d been  holding for six days. I was relieved for a brief moment before it hit me that my daughter was in surgery. But five hours later and she was out. Her epidural had worked, her cough had cleared and they had gotten a few degrees of range in her knees! In the coming two years the plates  in her knees will hopefully  get her even straighter!

No cough!

Epidural working!

One of the first things Laelia said after waking up from surgery was, “The next one to have surgery will be my brother. I’m gonna hold his hand and make sure he’s alright. I’m going to give him his medicine too!” (She seemed a little thrilled with that thought so I gave her a look. She quickly amended,) “Because I love him.” :) Someone is happy that this is her last big surgery for a while. :)

The first day after surgery everything went right that could go right. Everything. Then the day after that things went wrong. Laelia’s epidural had slipped a bit. The doctor recommended they pull it out and see how she did. We’ve made some stupid decisions before, but this one had two hard  days of consequences to it. She was in constant pain. And they threw every medicine they could think of at her. She had IVs in both hands and was on morphine, Valium, Tylenol, Codeine, something for the itching, something new for the panicking and something strong to help her sleep. As the first hard day progressed and they could not get on top of the pain they finally started doubling all doses.  She went 35 hours without sleep because of pain.  She made the nurse cry. She made us cry.  She was darn pitiful. Finally, since she was eating, drinking and pooping, I asked them to  discharge her and we would be right  down the road and come back if there were any problems. We took her back to the  Ronald McDonald House. Just being outside the hospital worked wonders. She got her first real sleep and so did we. Four solid hours. She woke up a new girl!

For as hard as her recovery has been, it is not as hard as the surgery she had  a year and a half ago when her epidural failed. That was much harder.

Sunday night we took two long plane rides home. We’d only been home  about twenty minutes before she threw up all the contents of her stomach, including her pain meds. She had a painful, sleepless night last night and a  painful morning all morning. I finally snuck enough pain meds into her food to get her resting again this afternoon. She is refusing pain meds and it’s hard to get them into her!  It’s my four year old verses my sanity! She  cries and cries that her legs hurt, but when I offer her pain meds she won’t take them and spits them out. Also they have me doing physical therapy with her already (if you can imagine this please say a prayer for me and for her) so just add that to the torture. All and all it’s been a hard week.

But we knew it would be  bad going into it. What we didn’t expect was any of the good times. It was downright thrilling to have to make the pediatric crutches Laelia uses longer because she  had gained a couple of inches overnight! Laelia was also praised for being the sweetest little thing in the PICU. And she was so diabolical even through her pain. She had a speech about what hurt and what she wanted done about it that she threw at anyone entering the room–even the janitor!  She directed her menu like a queen. When she was transferred out of the PICU she had me first take her to every floor of the hospital on her way to her recovery room  so she could tell them all that  she had just had surgery in an attempt to get presents out of the Shriners staff who seem to always walk around carrying goodies. (If it weren’t for all the medical stuff this place would be Kid Heaven!) She walked out with a monkey from the OR, a bear from PICU, a doll from the therapy floor and a doggie from somewhere.  It is a privilege to be this little girl’s mommy.  She is a  joy!

Today Laelia stood up tall by herself with the help of crutches and her casts.  She looked at me and  asked through  gritted teeth, “Mama? Am I tall enough for the big  rides at Disneyland?”

That little player is determined to get a trip to Disneyland out of this thing too. :)

Hip Plate Removal Surgery

Thursday, November 3rd, 2011

Sleeping Beauty is out of surgery!

(Hip plate removal surgery marks Laelia’s fifth surgery and she just turned four years old.)

Thank you for all your prayers and words of encouragement and well wishes and positive thoughts and everything else! This was our best surgery yet! And I’m sure all our friends and family contributed to that. My cousin, Josh, also put something on his music blog for Laelia. So sweet.

I don’t know where to start. Well I’ll just say I can’t believe we made it to the hospital by 6:30 a.m. after three hours of sleep. (Considering it was 3:30 a.m. in California.) We’ve looked better. Laelia was her usual chipper self so we gave her the stink eye a lot. :)

It’s a practice at Shriners Hospital for Children for the anesthesiologist to carry your child into the surgical room without her parents. In San Diego I would get into full scrubs and follow her in and help her get through the scary gas mask, etc. Here I just watch as they take off with her. So how do you get a perfect stranger to carry a child into surgery without the child freaking out?

You get them drunk. Really drunk.

There’s a medicine they give them orally that makes the kids so loopy and crazy that it provides a bit of dark comedy right before they leave. Laelia is the funniest drunkard ever. She’s goes from being scared to grinning her head off at everything. And her big head just bobs like her little neck has no power whatsoever over it’s course. Her cheeks get rosy and she starts talking nonsense too. It’s the best. Charley went to get out the video camera to record my daughter making a right fool of herself in my arms when the anesthesiologist came for her. Then it became a little heartbreaking.

 

Surgery went well. She was under for only about two hours. A bit of bone grew over the right plate so they had to chip it off before removing that plate. But my biggest fear was evaded: none of her bones broke! And that means this is Laelia’s first ever surgery where she did not go into casts afterwards!!!!!!!!!

She came out of her deep sleep a mess. She screamed her head off. I walked into the room with her crying and the apologetic nurse saying she hadn’t been “doing it long.” Who knows what that means. I went to her side and sang to her. She just cried loudly for a while. The nurses were asking where the pain was. Finally Laelia just shook her head. I asked her, “Are you in pain?” Laelia shook her head. “Are you just mad?” Laelia nodded and said between gasps, “Saaaaaaaaaaaaaaaaad toooooooooooo!” Poor thing hates surgery.

Reassured her pain meds were working (remember our failed epidural last surgery?), I rocked her in a rocking chair and then we transported a calmer version of Laelia to the fifth floor for recovery. She cuddled and fretted and finally fell asleep. So did her daddy.

She woke up and drank a little. A good sign. She hated her IV and would cry out saying she was in pain, but when we asked where the pain was she said her hand. Well her pain should have been in her hips where the surgery was, so I can only assume she was trying this ploy to get us to remove the IV. She would have done anything to get that out and even attempted to do it herself! Good thing they tape it down on kids!

This surgery was just so much easier than others we’ve had. She only needed extra oxygen for about ten minutes. That’s a first. We usually have that thing going by her head for days. By the end of her stays I’m usually pretty light headed from leaning in close. :) She also had the usual sweaty head and low temp, but that was also minimal. She developed a cough, but it wasn’t bad enough like last time to require the breathing treatments. We even decided to put her in her own clothes and it made her look and feel even better!

I remember after her last surgery clutching the Pain Management brochure they gave us and reading it over and over, searching for ideas that would help. This time we were joking about her stricken look as she told us it wasn’t funny. “It’s not nice! I had surgery!” She pouted. But she was just doing so well we couldn’t help ourselves. :)

By dinner time Laelia had eaten a ton and wanted her Halloween candy. No nausea this time! She was being polite to the nurses but she was bored. So they let us go home! We were suppose to stay overnight, but we happily fled back to the Ronald McDonald House. Laelia was so happy to see her mound of Halloween candy again until I assured her that she couldn’t have any until it had been a full 24 hours after surgery. :) It had only been twelve hours!

Now I know surgery, and I’ve experienced it quite a few times, but this was nothing, this was EASY. They even cut into scars she already had so no new scars!

We visited Brysen, an AMCer who is also from California (although a good nine hour drive away from us), while we were there. He had a similar surgery to what Laelia had last year. He had lots of complications though, but seems to be doing better now. Still Laelia tried to say, “There there, it will be alright,” and make him feel better. He put up with her well. :) I have been loving his mom’s blog since I discovered it: http://www.mylifemydesire.blogspot.com/ (Scroll down to the bottom of the page if you want to turn off the music.)

We got back to the house and had some dinner. We ran into Jen and her family while we were there. Isabel (also an AMCer), Emma and Laelia colored pictures and Laelia even moved around in her wheelchair by herself. That caused some pain issues later, but I think the freedom was good for her. (I’m writing this post the next day and the girls are playing in the playground while I do.)

Laelia didn’t sleep much and she scared us with a low fever and some pain issues, but overall I think this went better than it could have. Her cough seems better this morning too. She just seems happier in her own bed with her own music and pillow.

Does this look like a kid who had surgery this morning???

Baby Joel

Sunday, May 15th, 2011

This is baby “Joel.” He has arthrogryposis like some of the best people on this planet do. Below are copied and pasted articles and stories of the reality for those with arthrogryposis  in certain parts of the world. Donating a few dollars to Joel’s account by clicking on his picture will help save him from this fate by off-setting the cost of his adoption. He could be Laelia. He is so similar to her it’s scary. He haunts me. Please help me support him.

In you the orphan finds mercy.–Hosea 14:3

Never take advantage of any widow or orphan. If you do and they cry out to me, you can be sure that I will hear their cry.–Exodus 22:22-23

Around age four,  children with special needs (despite maybe  having no mental problems)  face mental institutions.

Here’s what they look like. (Warning, prepare your heart before clicking on this video link.)

Little has changed since that video above was made by the Today show.

And I just imagine Laelia here and it makes me hurt deep within.

Below are other stories.

“Lillian Horodysky, founder and Executive Director of DVOU commented on the alarming condition of orphanages in Ukraine, ‘There were rooms after rooms full of children, lying in their beds, just staring up at the ceiling. All that could be heard was the rustling of their covers, if they moved. It seems as though the thoughts in my own head sounded louder than a disabled orphans barely audible sigh.’ The conditions of most Ukrainian orphanages are deeply concerning. Most orphanages for children with special needs are located in remote areas of Ukraine[...] and  orphans’ chances of survival are dramatically reduced even further because of substandard medical care, childcare and little or no education.’”
(http://www.artukraine.com/uasupport/dvou.htm)

Because I rescued the poor who cried for help, and the fatherless who had none to assist him. —  Job 29:12

Learn to do good. Seek justice. Help the oppressed. Defend the cause of orphans. Fight for the rights of widows. –Isaiah 1:17

“Within two weeks of arriving in Ukraine, Nita went to her first orphanage, Veloska, where God broke her heart for the plight of the orphans. She discovered a system which is the same throughout the former Soviet Union. Children are housed in different facilities depending upon their mental and physical conditions. It is estimated that there are over 60,000 ‘orphans’ in Ukraine. The vast majority of these children have parents and have been placed in the orphanages[...] simply because they are handicapped. When the children reach the age of three to three and a half, they are evaluated by a panel of experts who determine whether these children are ‘normal’ or ‘retarded.’ Once a child is labeled as ‘retarded’ (or ‘imbecile’), they are sent to an orphanage for the mentally retarded where they will remain until they reach adulthood.” (http://www.godshiddentreasures.org/orphanmin.html)

I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me! –Matthew 25:40

“Working in Ukraine, he [Terry Hallman] discovered that the standards of care given to disabled children in many orphanages were extremely poor, and that children often stood little chance of surviving into their teens. Terry wrote an insightful and shocking article, ‘Death Camps for Children’, which explored and exposed the key reasons behind the issue, such as a lack of funding, limited medical knowledge and large-scale corruption.” (http://www.justmeans.com/reports/Ukraine–Death-Camps–For-Children/525.html)

Speak up for those who cannot speak for themselves; ensure justice for those being crushed. Yes, speak up for the poor and helpless, and see that they get justice. –Proverbs 31:8-9

“When we arrived at the orphanage we were met by older children without coats, they were begging us to give things to them and not to the directors. It is very hard to write about the rest of this part of the trip. I cannot give a step by step account because we were all in a state of shock. We spoke to the director about our program and he told us that he knows the children need more but he said, ‘I cannot ask my workers to do more, they work very hard, clearing the road,
shoveling snow, cleaning the floors and the children, they have not time, they must work very hard all day and then they must dig graves and bury children.’ What do you say to that? Still, the staff took us around to show us how it is. Words don’t come to mind, most of our team was crying and could not stop. Dark hallways, screaming, children clustered together in freezing rooms, some in strait-jackets, haunted looking crying, asking if they were good, asking for food. Water dripping from the dark ceilings, mold everywhere. We held children who were 10 and 13 years old in our arms like infants. One team member said later that she never knew that humans are like fish and will only grow to the size of their environment. One team member threw up outside. Children never leave their beds in some rooms. These children are ages 4-16. In other rooms they leave to go to a room with just a bench and nothing else in it. They hold each other -rocking one another. I have never seen such deprivation and our photographer said it best when he said it was a concentration camp for children. Sorry, this is such a hard part to write but I looked in the eyes of many children who are dying. Their tiny bones fit into the palm of my hands. Their skeleton faces begging for help. No one in our team has really slept since. We talk about it but just end up in tears. I promised the orphanage staff we would come back with a team of people to help them. They are counting on it. The director told one team member that 20 years ago he asked for help there and the soviet minister came and visited. The visiting soviet minister told the director, ‘why do you keep these animals alive? You can kill them, you know how to do it you are a doctor.’ He never sent any money or aid to the orphanage.” (http://eng.maidanua.org/node/581)

Do not withhold good from those who deserve it, when it is in your power to act. –Proverbs 3:27

Therefore, to one who knows the right thing to do and does not do it, to him it is sin. –James 4:17

“End of the Road. The children’s home at Kalinovka in rural Zaporozhye Oblast can scarcely be called a ‘home,’ and the children, 160 in number, ages 4-40, are by no means typical ‘children.’ For this facility in rural Ukraine is the end of the road, both literally and figuratively, for some of the oblast’s most severely impaired children–kids with neurological, cognitive, and other crippling disabilities. Alyosha, for example, age five, lacks hands and feet. But he is only one of many at Kalinovka needing care and affection. Between thirty and thirty-five children are confined 24/7 to beds in a ward that has until recently been off-limits to visitors. Permanently institutionalized, 80% of the children here seldom see moms, dads, or relatives. For the 100 or so children who can walk, there is little in the way of planned activities or learning. None of these children, so we were told, is ‘educable.’ Nothing could be further from the truth. Clothing is often shabby and dirty. A number of the girls have Down Syndrome; many boys here appear to have some degree of cerebral palsy or similar neurological impairment; others lack arms or legs; some appear autistic. In 2005 a child, Nadyusha, with a congenital brain hernia was sent to Kalinovka, probably to die; still untreated, she has managed to stay alive. There is no doctor in daily residence; a physician comes once a week. The bedfast children seldom, if ever, go outdoors. As a result of limited care and nutrition, the mortality rate at Kalinovka is said to be eight to ten annually.” (http://www.deti.zp.ua/eng/show_article.php?a_id=90002)

Pure and genuine religion in the sight of God the Father means caring for orphans and widows in their distress and refusing to let the world corrupt you.–James 1:27

“And so it began.   The road to teaching Haven new things.   The road toward healing. The little angel was locked away in a room for the last two years of her life, isolated from everyone because orphanage staff were afraid to “catch” what she had if they touched her (autism, becoming non-verbal).   Life for Haven was about to change. It struck me this week–the change in Haven’s life has been nothing short of miraculous.   I have looked at my sweet little girl after being away from home for a while, and something has struck me over and over again. Haven has hope!   It’s not that I did not know it before, because I did, but this time it’s different. I see in Haven what every single child waiting deserves.   Hope! THERE IS NO HOPE FOR ANY CHILD IN AN ORPHANAGE! Nothing.   Zero.   Zip. Haven would absolutely have ended up in a mental institution for disabled adults. What kind of hope is that?   What kind of life is that for any human being? Adoption is their ONLY HOPE!   And in most countries, foreign adoption is their only hope.   There is a less than zero percent chance that either Haven, Hannah-Claire, Hailee or Harper would be adopted by a local family.   They have no value in their own country.   They have absolutely no worth in their society. They are are defined by their ‘special needs’ in their countries. Their only hope is for a foreign family to come and rescue them. Period. (http://www.nogreaterjoymom.com/2010_04_01_archive.html)

 

Proverbs 24:11-12.

11 Rescue those being led away to death;
hold back those staggering toward slaughter.
12 If you say, “But we knew nothing about this,”
does not he who weighs the heart perceive it?
Does not he who guards your life know it?
Will he not repay everyone according to what they have done?

 

And anyone who welcomes a little child like this on my behalf is welcoming me.–Matthew 18:5

 

For more facts click here.

You must be this tall… and able to stand… and not have arthrogryposis to ride this ride.

Thursday, February 10th, 2011

Back when my dad and I were first working out  their visit, I had  planned on not having any appointments for the three short days they would be here. So when CCS and Laelia’s chiropractor had to happen Friday, the day they arrived, we just shrugged and they got dragged along. We make it up to Lali by going to the zoo the next day.

There was an elephant playing with a log that just fascinated Laelia. But when he dropped the log, Laelia’s eyes got big and she squeaked, “Mama his trunk fell off a little bit!” :)   During my explanation of the elephant trunk/log we got a call from  our awesome  case manager (from our insurance!)  who saw the pictures of Laelia’s foot on  this blog and said, “You need to get her to a doctor! Don’t wait until tomorrow!”   We had been very careful with her ulser  sore doing wet/dry treatments, but we weren’t going to take chances. We made our way back home to grab showers and then headed over to Rapid Care. Sure enough Laelia’s foot was actually  infected!  And a rash was climbing over her skin. She needed immediate antibiotics.  I was  surprised because she never complained!  

Waiting for the Rapid Care doctor.

Signs of infection.

The Rapid Care doctor told us to see our regular doctor within two days. She wasn’t available, but another pediatrician in the same office was.  So we got an appointment the very next day during their Sunday  emergency hours. During that appointment (our forth medical appointment in the three short days  the grandparents were in town!)  it was confirmed to be a skin  infection, but  not a bad one! She wasn’t sick, had no fever, and  it wasn’t in her bloodstream or something dangerous so we just had to keep giving her antibiotics and it would clear up!  He bandaged it and gave us instructions for care and  even miraculously gave us the  green light for our trip to Disneyland the next day! (Laelia was talking nonstop about Disneyland so he made her day! She even invited him to come too!)

For the last ten days we have asked  Laelia every night, “Where are we going in ten days?” Or “Where are we going in nine days?” Or whatever day it was. And every time she yelled, “Disneyland!” So after our appointment  we asked her, “Where are we going tomorrow?!” And she replied, “The doctor?”   Ha! Poor thing.

Oh and at the mention of the “D” word,  my Disneyland-loving (crazy fanatical fan) husband mentioned that  Lali wanted to do more rides but we didn’t know how tall she was. So the doctor had the nurse come in and they  measured her lying on the table. From  flat foot  to the top of her head she measured 36 1/2 inches exactly without having to stretch out her contractures. Well that was perfect for the one coaster she wanted to ride. Charley then asked if  the doctor would  write an official note just in case anyone gave us trouble about it. The doctor did it with a smile and Laelia got excited about riding her very  first little coaster!

But not as excited as her daddy. :)

Doctor’s note officially stating she is 36 1/2 inches in length!

Laelia loves Disneyland. To put it mildly. She knows all the words to It’s A Small World and the Enchanted  Tiki Room. She watches videos about Disneyland when we’re not there. Since we live very close to Disneyland and since she was a free ticket until she turned three, we’ve spoiled her rotten with visits there. She even went to Disneyland in casts, weeks after surgery. Sometimes the promise of Disneyland is the only thing that keeps her going after a hard doctor’s visit or post surgery.

Dumbo Flyers

Grandpa and Grandma caved and bought her a bubble gun. :)

So the coaster she wanted to ride  was  the Gadget Go Coaster. You have to be 35 inches to do this. No problem. She’s  tall enough–or more correctly long enough–to ride. We got to the back entrance for wheelchairs (Grandma and  Lali were sharing one),  and when we got to the front of the line we said, slightly apologetically, “She doesn’t stand but she’s 36 1/2 inches.”

Cast Member Cindy: “She’ll need to stand under the line.”

Me: “She doesn’t stand or straighten her legs all the way due to a condition called arthrogryposis. But she’s 36 1/2 inches long. They measured her yesterday.” I said super nicely, feeling sorry for the cast member’s confusion.

Another AMC mom (Cheryl)  told me this great piece of  wisdom once that helps me in these situations. She said  that some people just don’t have a file in their brain-folder for AMC. It doesn’t compute. In their minds  based on their lifelong experience, all children stand and all children stretch out, so  finding out there’s one who is different just plain rocks their world. It’s definitely a  truism. We all have something that at one point we discover we don’t have  a “file” for in our “folder.” The first time I met a Deaf person (Sue K.)  she didn’t hear the door slam shut. That didn’t compute with me. I had never met a Deaf person, and even though logically I knew she was Deaf, I didn’t get that she couldn’t hear!  Everyone hears doors slamming, right?! :)  I feel dumb now, but I understand when people give me *that* look when first meeting my daughter.

Cast Member Cindy: “No, she’ll have to be held up to the line then. That’s the rule.  She needs to be this tall to ride, and she needs to be under the sign.” She gestured to that “You Must Be This Tall” sign.

(The only problem with not having a folder for something in your brain is that it’s sometimes  really hard to incert the file in other people’s  folders.)

Me: “No, she doesn’t need to stand to ride.” I’m still smiling. “She has a  disability. But I  assure you she’s 36 1/2 inches.”

Cindy: “You’ll have to hold her up to it then.”

Eventually we realize we were getting no where and Charley was forced to hold her up to the darn measurement. She curls up while hanging there so Charley starts to explain, “See how her legs don’t straighten out? That’s because of the arthrogryposis or joint contractures  in her knees and hips. You have to measure her lying down.” Even being held up to the sign,  she is obviously to me tall enough if she could straighten her legs.

Cindy: “She doesn’t come up to the sign. She’s too short. There’s nothing I can do.” Cindy tries to walk away.

Me: “She doesn’t stand and she doesn’t straighten out! I have a doctor’s note, see!” I try to hand her my doctor’s note.

Cindy: “I can’t take that! I’m not a doctor!” She actually pushes the paper away. (Oh and only doctors can read doctor’s notes?)

Me: “Okay but look it states 36 1/2 inches long by proper measurement and it’s signed by her doctor and dated yesterday.”

Cindy: “Her safety is at stake here. I’m going to have to call my lead because my job is on the line.” She mutters more things about her job and how it’s in some sort of jeopardy because of my daughter.

Me: “Well here’s something I made and it’s not medical, it’s just a little card that tells you who she is and what she has.” (I’m still being very nice and understanding at this point.)

Cindy: “I can’t take that! You can’t give me things!” She pushes the card away with open hands and looks horrified.

Me: “Fine then get your lead, but you realize this is illegal to keep us from a ride just because  she’s disabled.”

Cindy: “It’s fine.” She walks off.

Me (yelling at her back as she flees): “IT’S NOT FINE! IT’S ILLEGAL!”

Charley: “Okay calm down.”

Me: *huff puff grinding teeth* I go into advocate battle mode. Something I did not expect at Disneyland.

Ten minutes and several nasty looks from fellow park patrons later, THREE leads  (managers) show up and surround us. We’re introduced to two of them, one hangs back blocking our exit.

Lead: “What’s the problem here?”

I explain that my daughter is definitely NOT the problem–the problem is lack of education of the staff. The lead goes through a spiel on  how important safety is, once again making me some sort of bad mother doing something unsafe with my child. I correct her in full educate-the-people mode. I made her explain their policy for children who can’t stand. Apparently their policy is to ASK THE PARENTS!  Something the staff must not understand. She then  asks if  I STILL want to ride the ride. I never did want to ride the darn kid’s ride so I turn and ask Laelia, who  is fully capable of answering for herself, and  Lali begs to ride. The lead seems charmed by Laelia’s enthusiasm and finally lets us on the ride. She also  mentions that  the only other ride in the park that requires this height requirement is the Matterhorn and  asks me if  we would  like  them to call ahead to make sure this doesn’t happen again? I said no thanks since I planned on now avoiding the Matterhorn like the plague. I just couldn’t  fight another battle again today.   We finally got on the Gadget Coaster  ride.  Laelia loved it and begged to ride again. I was so  near tears that I just couldn’t go back in line and deal with all those people again. So we fled. We then, after a short trip to It’s A Small World, went to Guest Services and I explain what happened. While I explained I also broke down into  tears which I hate! Then I asked if there’s some sign/card/placard they could give us so this doesn’t happen again. (Even something hand written.)

Cast Member Colby: “We don’t really have anything like that. If your child can’t stand it’s our policy to ask the parent for the child’s height and we take their word for it.”

Me (crying my eyes out): “But that doesn’t work out in real life! I’m still seen as a bad guy. So can I have some sort of card with her  height on it? Or a pass for  certain rides so we can get on  without harassment?”

Colby: “We don’t have anything like that. I can offer you some free ice cream… if you want.”

Me: “Can I make a suggestion that you have some sort of official card with, say, Micky’s picture on it, and all it has to say is, ‘Can Ride  All Attractions for 35 inches and smaller.’  Or something like that?”

Colby: “We don’t have anything like that.”

Me: “No, I mean that’s my suggestion. Like for a suggestion box. You should have something like that. Can you pass that along?”

Colby: “We don’t really take suggestions.”

Colby was actually really nice (and  we did get five ice cream sandwiches out of him), but I wish he would have at least lied and  said he would  pass along my suggestion. Well maybe he thought better of it later and did pass it along. It’s a good idea! Some children who can’t stand yet  are small enough  for parents to bring strollers instead of wheelchairs to the park, and those children will run into this very problem! We can’t be the only family!

So we headed over  to California Adventure. Laelia fell asleep so we left her in a corner of  the park with Grandma while we rode the Screamin’. When we got back, Laelia had been awake for the last twenty minutes and  begging Grandma  to ride the bumper cars. That was the ride we parked her in front of for her nap.  So we got in line. Turns out this ride has a height requirement:  35 inches. You’ve got to be kidding me. We approach the entrance by the “You Must Be This Tall” stick with dread. I hold my breath. Charley chivalrously says he’ll handle this. He calms me down and says that now we have all the tools and rules we need to get by without a fight.

Cast Member Nathan: “I’ll have to  check her height.”

Charley who is holding her: “She’s 36 1/2 inches and doesn’t stand or straighten out all the way. She won’t be held under the sign. But I can tell you she’s exactly 36 1/2 inches.”

Nathan: “Then I’m afraid I can’t let you on.”

What?!

Me: “If a child can’t stand isn’t it your policy to ask the parents and take their word for it? We were just told this by three leads!”

Nathan: “Um, if she can’t stand under the sign then she can’t ride.”

Me,  lowering my voice  dangerously: “She’s disabled. (Wow, she’s had to hear that a lot today.) She’s 36 1/2 inches long. You’re not allow to ask for this, but I’m VOLUNTEERING   her doctor’s note with this information written on it.” I hold it up in front of him.

Nathan looks around furtively, “Okay go in.” He’s speaking  quietly like he’s letting us get away with something.

Me: “She meets all of your requirements for safety!” That’s my way of saying, “We’re not getting away with something and you’re not doing us a favor here! She rightfully gets a spot on this ride with every peer who is able-bodied.”

Okay this ruined my day. We joked about marching back to Guest Services and getting more ice cream. If we stayed much longer we’d walk  out of there with a year’s supply! Ugh but even chuckling felt hollow. My daughter seemed to be having a great time, but it’s not like this was all lost on her. She saw me cry. She heard over and over again that she couldn’t stand, couldn’t straighten out. What does that do to a child’s thinking about herself? Plus I was full on depressed. She would beam up at me and I would force a smile back down at her through the agony.

I mean in one day I’d been told that I’m a bad parent by putting my child in danger, or I’m a bad person by trying to do something sneaky.  I risked the employment of the cast members by not leaving, and made everyone uncomfortable because they had to deal with my sweet daughter wanting to ride a darn ride.  In conclusion I must be a bad person. That’s what I read in the eyes of other guests in the park who walked around us  to get on the  coaster or just  stared with this look that read: You, Mother of Different Child, are bad. I was completely vilified.

I hate when people are unhappy with me. I hate being *that* mom. I hate when I’m not following the rules. If it had been just me there I would have walked away rather than welcome a conflict. But it was my daughter. I’d do anything for my daughter, and I won’t let people trample her rights as a 36 and a half inch tall young lady. But I don’t know how to shield her from this. Or from the other guests at the park who look at her as the poor little girl with the bad mother.

It was right before we left the park, right as I was just feeling my worst, that  Laelia coughed. And it wasn’t one of her cute little coughs either. Oh no, it was a Nasty McAwful cough. One of those coughs smokers have. Sure enough she was getting sick. Of course. At Disneyland. We went home.

That night she coughed more and more as the hours went by. By the next morning she sounded hoarse, couldn’t stop coughing and had a runny nose. She also felt warm to the touch. I jumped online and discovered that these antibiotics we just started taking  the night before can actually  make colds worse or make you more susceptible to colds because they indiscriminately kill the beneficial bacteria in your body. And apparently they work fast. Goodie.

So I’ve had to cancel her PT, her chiropractor, her play date, the rest of her week at school, etc.  And I also had to take another leave-without-pay day off work.  

Not only that but we also went to our orthotics appointment finally only to discover that Laelia’s AFOs weren’t working for her at all. We actually can’t wear either one anymore because there are now holes in both of her feet! (And she is required to wear shoes to go to school!) Is this really happening?!!!  The AFOs have no padding and the heals of her feet were left to scrap the back of the shoe. It’s not just an issue of needing more padding, it’s a fundamental issue. So now we’re trying to get someone to make us new ones. Doctor van Bosse has been wonderful about emailing and trying to coordinate with the orthotics guys in Philly, but we may have to get something going down here as well. It’s a mess. The doctor we need to see locally isn’t available to get us in for an appointment for one thing. So Charley emailed Dr. vB our orthopedic’s phone number and hopefully they will coordinate between themselves. In the mean time it’s been suggested by more than one doctor that we get Laelia in plaster casts (!!!) until they can work out new AFOs for us that could take six weeks to figure out! Back in casts!!! No!!!!!!!!!!

Did I mention we did Turtle Talk with Crush and my daughter didn’t get called on because she couldn’t raise her hand? Did I mention our CCS appointment that we finally got worked out didn’t give us an OT eval?  Not only that but the  paperwork said  that “the mother requested PT only!” Which is just wrong! So now we’re back to fighting with CCS who hasn’t returned my phone call after a week of waiting. Yeah. So it’s been less of an Enchanted Tiki Room  week and more of a Mr. Toad’s Wild Ride lately. We keep waiting for Laelia to get better and not be in pain before taking our overnight break that we got for Christmas, but I’m starting to think that is not going to happen. I just hope this can all get worked out quickly and she can be a sickness-free, medicine-free and  pain-free little girl again.

Blood and Guts

Sunday, January 30th, 2011

We’re so tired all the time lately that I just broke down crying in front of a group of people I don’t know this morning. Thankfully they were wonderfully sympathetic. Laelia’s foot issue is worse. In fact I’ve decided to include some images of her foot that are disturbing so maybe you’ll want to hide the monitor from younger viewers before scrolling down. Her AFO (ankle foot orthotic, aka “special shoe”)  on the right foot has caused a crater that just gushes blood, making it unwearable.

That spot was getting worse and worse, and we were trying everything we knew  to keep the foot in the AFO (and keep it from re-clubbing). But nothing worked: not band-aids, “working” the straps, a cotton ball between the sore spot and strap, putting the strap as low as we could off the sore spot–nothing. So finally after the blood gyser  last night, we gave up and left the darn  AFO off her all night. It was the first full night’s sleep she’s had since January 7th. I wish I could say the same for us, but we were up worrying about bleeding issues, re-clubbing issues and dealing with guilt. With regular clubfeet we wouldn’t worry, but an arthrogryposis clubfoot likes to curl up very easily. They are the most stubborn feet! And we need that AFO to avoid surgery!

As you can see in the above pictures I put her back in her old AFO today that doesn’t do much for her and is too small,  but it’s better than nothing. There’s a hard piece of plastic between her foot and the strap on the old shoe so it doesn’t hurt that area as much. We are going to try and meet with Laelia’s busy pediatrician tomorrow (Monday the 31st)  so we can get a referral to an orthotics company ASAP  and try and “fix” the AFO. Her AFOs were made in Philadelphia so it’s not like we can march over there and demand they fix them. (PS: I had found the old AFO in my unpacked bag I had taken to Philadelphia. I haven’t found the time to unpack in almost three weeks!)

In other news, CCS has not moved an inch on our PT appointments. They have just sat on our paperwork with their thumb up a delicate part of their anatomy. I’m sick of this. We are waiting for no reason! I would fight this  tooth and nail and make a big stink if I knew how much longer it would take, but they won’t give me any idea! I would just hate to complain and then have them call me the next day saying they were done.  But it’s getting ridiculous waiting for people to just stamp an approval on our case. We already know we qualify for their medical therapy program based solely on our diagnosis! So why has this been so hard? And it was suppose to have been rushed since she got out of casts three weeks ago!!! And she was suppose to have been getting physical therapy two times a week for the last three weeks! So frustrating!!!

Since CCS are punks, we have had to try and push our  insurance to move faster. Our case manager, Gretchen, never returned my calls. Ever. Thanks Gretchen. But thankfully we got a new case manager through CPMG named Stacy. My husband likes to say, “The best thing about Stacy is that she answers the phone!”  But actually we like Stacy for more than just that. While I was down with a bad cold and sore throat, Charley took up my job of  calling and bugging people. :) He reached Stacy and they spoke on the phone for over an hour! Incredible!  She gave us ideas about how to  work the system to get Laelia’s  AFO  fixed, and she seemed to understand how important this all was. Finally someone helpful! Prayer answered. Stacy even gave us our much needed PT authorization!   Then  Charley  immediately called Children’s Hospital who only has one scheduler person who doesn’t work Fridays!! Ugggggggh. So we finally have auth, but still not PT. Hopefully soon.

While Charley was on the phone with Stacy, Laelia was rubbing my foot to comfort me since I was miserably sick. She’s a total sweetheart and just cares so much for people!  Then she started “reading” me stories. At one point she said, “Mama, I’ll read you a God story.” Then she grabbed my Bible off the coffee table and held it in front of her upside-down, opened to the middle, and began,  “Once upon a time there were three little pigs and a big bad wolf.”   :) Best Bible story ever! :)

Laelia is adorable. Even when she’s in pain she’s adorable. On Saturday we went to get our family picture professionally taken for the first time ever. I knew Laelia was in pain so I told her I had a present for her (small thing of bubbles) if she could last the outing with a good attitude.  When she’s in pain the slightest thing can set her off. (I’m the  same way.)  So when she was playing with a picture sample and it got taken away she started to act up. But then immediately  as if by magic she  changed her tone and  apologized to the people nearby.  Right  as they were praising my parenting she added, “Now where’s my present?” :)    

She was also a good girl during her first ever chiropractor appointment on Thursday! We’re trying to see if  working her spine will allow her more range of motion or strong, more stable movements.  The chiropractor loves her because  she follows all his directions perfectly. She laid her head down  on the table and  took deep  breathes as he pressed down on her lower back. I thought she’d  throw a fit since he was a doctor and he was touching her, but I think his blue jeans and  great voice (better than Ted Williams!) put her at ease.  It looked relaxing! Charley and I found ourselves watching this happen while holding hands and grinning.  I didn’t know my wiggle worm would enjoy that so much!   Because she was so great  she got to pick the dinner of her choice. She chose Apple Jacks cereal dipped in ketchup. And that’s the last time she’ll ever get that deal. :)

Also, and this is exciting for me, we have a new rule in our home! The rule states that there will be no more watching TV or movies of any kind unless doing active weight bearing at the same time. (The rule does not apply to adults or Saturday mornings when adults want to sleep in. :)) So far this rule is proving to be a great encouragement during physical therapy. Backyardigans and Blues Clues and KPBS shows  are even more enjoyable when you’re earning them! Plus she doesn’t overdose on TV this way since she can’t watch much while weight bearing. But even simple weight bearing (like sitting on a ball with Mama holding her hips) counts, so she can last a whole show. It’s working really well!

Also we received a gift from our dear friends to pay for private PT out of pocket until  CCS  does the right thing.  The  same friends also  put us in touch with a friend of theirs  who is a PT, and that friend put us in touch with a closer PT who will most likely be doing the therapy soon.  I’ll call her tomorrow. It has meant so much to me. I’m so blown away by people’s  generosity.

Another example of generosity is that  for Jewels for Jared,  our friends and family  bought bracelets  to support baby Jared and had them sent to Laelia in her size! She has thirteen (!!!)  $5 bracelets that  you all gave her! She earns them during PT exercises. Thanks so much! Not only did you guys support Jared’s medical expenses, but you also supported Laelia’s physical therapy too!  Bracelets are great motivation to finish a 30 second push up!

Okay we just put Laelia down for the night and it sounds like she’s sleeping. No screaming. I hope it lasts. We have to do Laelia’s foot stretches every hour during the day  since her AFO is not doing the work for us. The stretches have gotten easier, not because she cries less, but more because we’re getting used to it. I’m relieved that my baby’s cries no longer kill a part of me, but at the same time I’m not thrilled about being callused in that way.

So much is still up in the air right now. Where we’ll be living, how she’ll go to preschool in pain, what to do with my job and how to deal with  her  right foot are just a few of the unknowns right now.  We’re hanging in there though. Life with arthrogryposis is sometimes hard, but this girl has brought so much joy to our lives. I mean it. I wouldn’t mind having another one with the same condition.  Charley hears this and thinks I’ve gone mad. :)

Tired of Hurting Her

Wednesday, January 12th, 2011

I’m old, Gandalf. I know I don’t look it, but I’m beginning to feel it in my heart. I feel… thin. Sort of stretched, like… butter scraped over too much bread. I need a holiday. A very long holiday.                          ~Bilbo Baggins

Pain reduces my little  girl into a ball of infant-like need. She loses her language skills, her manners and her ability to function. Laelia is in a lot of pain. I cause the pain. I think right now we both don’t like me.

Laelia’s doctor gave it to me straight. He laid out what therapy Laelia would absolutely require and how often to do it. I realized, as I immediately  started sobbing in front of him,  that what she needs is much more than  I’m providing now.  Constant care. Wow.  So I went home with a heavy heart as I tried to figure out how to make this work. Right now I’m only working half days at my job. And I’ve already met with my boss to try to  figure out what to do. Charley and I talked about me giving my two weeks notice, but instead we’re trying to work something else out with my work so we can still afford to move. It’s all still up in the air.  

Laelia needs so much. She needs stretching and massaging and all sorts of torture. Her AFOs are so painful. She screams when I take them off or cinch them up or look at them. She screams and cries most of the time I’m with her.

We don’t even put her shoes on correctly while she’s at school because she’d be in pain the whole day. And if it’s too hard on the school, God knows they’ll make it harder on our family.  I talked with a school admin on Monday who was unhappy Laelia still needed her wheelchair. This person really thought Laelia would be  walking after surgery and seemed  very put out. She mentioned it already takes  a long time  for Laelia to feed herself and get around as it is!  Ten bucks says this person doesn’t know the name of Laelia’s condition. Twenty bucks says  this person  has no idea how it feels to have a cast off and your atrophied limb stretched.  The admin  said, “Now  do you really want your daughter in a wheelchair for four hours?!” I wanted to say, “NO I WANT HER RUNNING AROUND!! OBVIOUSLY!”   I just calmly explained AGAIN what Laelia’s condition was and what her prognosis was. I’ve repeated myself so many times, I don’t know how I’m unclear! Bottom line: all her doctors, except for the one very special guy we travel 3000 miles to see,  tell me  she  will never  walk. Uggggggggggh!! I think this school admin person sometimes singles us out because a disability  is hard for them. During that same conversation with the same admin, they actually said, “Just tell me what you expect from us? What do you want us to do for you?” I hadn’t asked for anything at this point; besides asking where to  leave her wheelchair. Now would that person have ever asked that question of ANY other typical  students’ moms in that school? The answer is no.

I’m exhausted. I keep telling myself that the worst of the pain is behind us and the rest is  temporary. She’s reacting so badly to foot stretches that we’re considering taking her in for an x-ray to see if anything is broken. Just for peace of mind.

We’re not sleeping. Laelia wakes up several times in pain.

I’m a mess physically. I’ve been to  three different  doctors who can’t figure out why I’m dizzy or why I get vertigo. Laelia screamed for  twenty-eight minutes straight while we waited for  one doctor today. The receptionist was just putting phone calls straight on hold since she couldn’t hear over the cries. I couldn’t get Lali to calm down and I tried everything.  The doctor didn’t even  find the cause of  my vertigo and we went home feeling worse than when we went.

I’ve been crying for four days straight: at the doctors’ offices (both hers and mine), the grocery store, at work, while driving…

And if we didn’t need to deal with everything else, I’ve also  been trying to call my new  insurance who doesn’t know who I am, Children’s Hospital’s developmental services who doesn’t like that our insurance changed and won’t let us see our therapists for weeks, California Children’s Services who demand official doctors’ notes to prove she has AMC before processing our request (and if we do get them they won’t allow us to see our OT hand specialist anymore), Shriners Hospital in Los Angeles who we need to work out how to bus us to them, etc, etc, etc,  but  no one can get Laelia the PT she needs NOW. Shriners is the closest to providing it, but  that would mean being gone six hours a day, two days a week. Not ideal. And her doctor said if I can’t get her professional PT two times a week to call and write my local congress people and senators.  *cry*

Surgery without PT is like getting braces on your teeth and then once they’re off,  not wearing your retainer because no one will give you a freakin’ retainer for WEEKS and then your teeth go back to being a mess.  Stupid, right? Oh and no one will just work with us or make this easier because it would inconvenience them. For example, please no one take my word that Laelia has arthrogryposis. We just  like to give her surgeries for fun. Just assume we’re lying and demand multiple official copies of doctors’ notes from doctors who don’t return my calls.  Ugh! What? LOOKING at her isn’t good enough?

Okay I’ll stop being so sarcastic and angry. I’m just so  tired. I’m doing all this for the long term results. This is ALL temporary. Someday life will feel normal again, like it did before when we got on top of all her treatments, doctors and  therapies the first time. *deep breath* Sorry, I’m better now. :)

New Legs!

Wednesday, January 12th, 2011

Today at the grocery store I went to remove my daughter from the shopping cart and, before I even touched her,  she grimaced. She grimaces every time. Not because she hates grocery shopping as much as I do, but because her wide legs  always catch the cart, and her knees, that  stick out past her hips on either side,  bang against the metal frame. It takes two people to successfully remove my child from a shopping cart: one to hold her legs together and the other to lift her out of the seat. But  there was no one else around so Laelia grimaced. Like she always does.  

But what a shock when her legs slid right out!   For the first time in her life, my daughter  has legs that are positioned correctly to fit in the shopping cart seat!   Thank you Father God!  Thank you Dr. van Bosse! Thank you Shriners Hospital for Children in Philadelphia!

Laelia’s legs, a history:

10-10-07 – Laelia’s splayed, externally rotated legs at birth.

10-29-07 – Laelia’s first casts to correct her feet at three weeks old.

2/23/09 – One of our attempts to keep Laelia’s legs together. :)

2-14-10 – Laelia’s corrected feet (that finally fit into shoes) look great, but  her  legs  are still  so splayed and outwardly rotated  that  her toes point away from each other and her knees go off  in different directions.

(Her shirt says, “Dr. van Bosse Fan Club.”   Thanks Jessi!)  

1/11/11 – After seeing Dr. van Bosse and getting her osteotomies, Laelia’s legs are now straight! Her  knees now  crown her legs instead of jutting out to either side, and her toes point up instead of  away from  each other! She’s in the position most people have naturally when sitting or standing! And boy did she work for it!

The trip back to Philly was exhausting.

And required a lot of travel. Her friend, Justice,  gave her a push, but he didn’t go all the way to Philly so we had to get on a couple airplanes too. :)

When we got there it was so cold! Too cold for this little California girl!    Lali had  never seen snow before and asked me why it was  wet and cold.  She thought it would feel like pillows.  :)

At the Ronald McDonald House we spent time with Sophie, Ben and  their Mommy, Tammy! (The next day  the five of us would all get in a big rental car and drive to Shriners!)

Mama got practically NO sleep that night… or the next night… or on four of  the five airplanes we took. The reason for that was one little girl who would not let me sleep. The only sleeping she did do at the RMDH was when she was faking it for this picture. Mommy about strangled her. :-/

The next morning  we waited for our appointment with our friends. Here’s  baby Lexi!

Before cast removal.

After cast removal.

Lali’s new legs are so straight that I often find her staring at them like this. :) My favorite Laelia quote in her sweet little voice, “I’m very beautiful and straight now after my surgery.” Precious!

Her legs go together!

 

Her legs go apart! (She’s sporting the Wicked Witch of the East socks. :))

Oh and here’s a video of her waiting for Dr. van Bosse.

Laelia took FOUR baths while in Philly; I just emptied the tub when it got cold and filled it back up again.  Each time a new layer of dead skin got  gently massaged  off. She LOVED getting bath time back!

Laelia’s feet (especially the right foot) swelled up pretty bad  after our three (in one day)  airplane rides back home. It was because of the new, aggressive  AFOs and all the pressure they caused. Now she gets foot massages everyday until the swelling goes down.

But no matter how bad the travel, surgery, recovery, swollen feet or negative comments from strangers got, look at this end result! Look how straight she is!    Compare the above  picture of her lying on her side  to this!   Amazing, right?!

So now that I’ve gone through the eye candy (aka  pictures), I guess I’ll sit down to actually chronicle our journey. It was long and hard. Wait, that’s summarizing our journey. I guess it’s going to be hard to write about. Half of my brain no longer exists because of this trip; it was that exhausting.

I just want to say we had zero problems with flight attendants. Every one we met was courteous or helpful or nice. This is a major improvement from last time! And this is the first trip  where I prayed about this specifically.  It just made the whole trip seem surreal. Where were the fights? :) People I handed Lali’s card to were just really interested in her. It was great!

I also want to say that our needs kept getting mysteriously met. For instance, I got a rental car, but it was going to be too small to fit all my passengers. But before I even realized this I was getting help out to my rental car by a nice lady (just another traveler) when I heard her whistle and remark, “Wow, that’s a nice one! That must have set you back.” I was totally confused as my tiny rental car was unexpected, unasked for,  upgraded for free  to a larger vehicle! It fit all of us including three casted kids in the back, all our stuff,  a wheelchair and a double stroller.  

But not only that, our little needs got met too. I ran out of arms to carry things on the plane and several strangers at several different times helped me. Lali and I  were hungry but we  had no cash for the cash-only cafeteria so  they gave us  food  at no charge. We got lost,  but ran  into a security  guard we recognized who gave us directions. Getting lost meant I didn’t have time to stop for  gas for the rental car, but  Thrifty Rental decided to waive the fee and cover the gas.  It snowed, but we stayed on the road.  The Ronald McDonald House doesn’t take reservations, but we were able to stay  at the house  we wanted that was closest to the hospital.  Laelia was an excellent flyer and was well behaved through five airplanes! That in itself is a miracle! (And when we got back and I praised her in front of her father, Laelia beamed with pride.) I had a vertigo episode so bad that I fell over during Lali’s PT appointment, but that was the only bad one the whole trip and it was in a safe place!   Laelia would not sleep at all, so we ended up leaving at 3:00am our last night there because we were up anyway. We would have missed our flight if we hadn’t since we got lost, the elevators at the airport were broken and the flight was at 6:05am!

Pretty much lots of things just worked out. If I had written them all down, I could write a whole book of blessings! Our needs were met again and again. Our comforts not always, but our basic needs were covered.

I had  a sore throat, vertigo, stomach cramps (diarrhea and vomiting), a headache that only got worse when I got home, and stress and dizziness caused by lack of sleep while on this trip. I  didn’t sleep more than about three hours in four days. So this was a hard trip.  In fact, I got so sick the night before our appointment that I stopped up the toilet in  our room to the point that we had to switch rooms!

And the whole while  one special little girl refused to  let me sleep; she was too jet lagged and excited.  (She would not sleep the next night because  of pain and discomfort.)  I yelled at her once. I said–and I remember it exactly since it’s the second time I’ve ever yelled at her–I said, “I’m SICK and TIRED of YOU!”   Since then if I’m down or frustrated Laelia will  ask me, “Mama? Are you sick and tired?” It breaks my heart.

I  tried Lali in the bed with me, Lali in the other bed, Lali on the floor and even Lali in the closet! Nothing worked. She would not sleep. Finally in the middle of the night (around 3:30am) Lali asks me, “Mama, will I go to Heaven like Grandma if I die?” Okay now I was wide awake. I told her she wasn’t going to die, she was just  too sleepy and needed to get lots of sleep. (I was very desperate for sleep.) But she asked again, “Will I be with God if I die?” Sure honey, just sleep now. But it seemed to bother her so I cuddled her close under my chin, her fuzzy hair going up my nose, and said that she was God’s most loved kid. Then when it was clear she would not sleep I told her her favorite story of Adam and Eve. I told her how God created  Adam and Eve  and how good they were and how he loved to hang out with them and how Mama is sure they always went to bed on time and slept through the night. :)  Laelia loves to chime in that they ate the fruit when they weren’t suppose to and that’s called sin. And sin is “anything we think, say or do that makes God unhappy.” (Insert Laelia’s sad face here.)  And how sin pushes God away (insert Laelia pushing me here)  because God is holy. Then I resume my story once I get it back and add that God caught them in the garden of Eden all naked and ashamed so he sacrificed an animal, using its skin/fur  to cover their shame. And how the punishment for sin is death so people used to sacrifice animals to cover their sins temporarily. But how Jesus was called  “the Lamb of God who takes away the sin of the world.” And how he died in our place, to take our sin away in the same way. Then he rose from the dead. So Laelia said, “Jesus died for my sin like a lamb! Now I can be with Holy God!” And she accepted Jesus as her savior with all the passion of a three-year old trying to get out of bed time.

Before we realized it, it  was morning and we’d gotten zero sleep. Time to drag ourselves into the snow for cast removal, AFO fittings and a very special, life-altering (although we didn’t know it at the time)  doctor’s visit.

Our insurance change slowed the whole process down a bit. Cast removal was a dramatic event. Laelia screamed louder than I have ever heard her scream before. It was unnerving. And the screaming lasted as long as the cast removal, a whole 20 solid minutes since they had to saw around the bars. Then we were on to x-rays.  These were  the first x-rays she ever took in her whole life that she didn’t cry/scream through. (Small victory!) Then off to  her AFO fittings. That took forever. It was at this point that we realized no one had a small child’s potty for her to go number two in. And she was afraid of the adult toilet because she could fall in. So she had to go number two in  a diaper while waiting for the AFO guy, which embarrassed her a bit. When we finally got to our doctor’s appointment, AFOs in hand (well, on feet) it  was after lunch.

We briefly met Zak and his daughters, one of which is Grace who has AMC, and the Nalle family whose blog I follow. The Nalles adopted Aaron and this was their second trip to Philly–their first casting. Poor Aaron.

Then we finally got to see Dr. van Bosse. Even though he was pleasant as always, we were hit with a life changer. Laelia needed a lot more than what she was getting. She needed two PT appointments a week with a professional. She needed stretches and exercises several more times a day. She needed weight bearing. She needed her feet stretched. And if we couldn’t get these things then we needed to start contacting our local government. We could no longer just do PT and OT once a month because it cost $80 a visit. If she is going to walk, we needed to step it up.

Well I work full time so that creates an issue. Her school won’t do a darn thing, not even simple stretches. It’s a mess. Dr. vB also mentioned that if worst comes to worst I could have her bused up to Los Angeles to get free PT at the Shriners there. That would literally be  six hours away from home twice a week.

And on top of it all, it was going to be a painful time for Lali. Especially the first two weeks.

My husband and I aren’t always graceful in how we handle all this stress. Charley once asked me once I got home  to stop doing Laelia’s stretches in front of him because he couldn’t take it anymore. Laelia’s pain makes us crazy. And I get so upset with how everything has to be so much harder for her. She can’t do simple things seemingly everyone else on the planet was born doing naturally without huge effort, surgery and pain! It sucks! Laelia says, “Pain is good because it means I’m getting better.” At least one of us has a good attitude… when she’s not screaming.

And I’ve been dealing with her preschool as well. They are a government-run facility, meaning they can’t “quit me.” But the head admin there  can be the least amount of understanding as humanly possible to make our already miserable lives even more hard. It’s willful ignorance.

So life has changed, and life is hard, but we continue on. Our beautiful daughter looks at herself in the mirror often and stares at her straight new legs while smoothing them with her hands. I don’t think she gave it much thought before, but she now thinks of herself as very pretty.  And she  is.  

We weren’t given bad news in Philly, but we were handed change. And that’s always hard. I hate change. It makes me feel out of control. I like things to stay the same. But I know if they did then  my daughter would not  have her lovely straight legs. I just need to focus on the positive.

Maybe I’ll go  buy a shopping cart and then just spend hours putting my daughter in and out of it. Just for the fun of it. :)