Archive for the 'medical science' Category

Happy birthday Roland!

Sunday, October 14th, 2012

My son’s first birthday is today! He turned two. (Confusing? Well that’s adoption for you.) He’s been our son for eight weeks now and boy is he thriving! For one thing he can talk now! He says “hello” to everyone we meet! Plus he can say Mama which I LOVE!!!!!!!!!!!!!! (He sometimes even refers to me as Mama. Mostly I’m “Dadoo.”  What the heck does dadoo even mean?!!) (And I swear he has the cutest little accent, but maybe that’s in my head. :)) Click here for a video of him saying all his cool new words! Wow, how far he’s come!

We wanted to do something grand for his first birthday in our family, but ended up downplaying the whole thing a bit. We didn’t want to have a crowd or even a small group in our home since we have to maintain this as a safe place for a few more months. We also didn’t want to let him blow out candles, because knowing my son, introducing him to fire would only lead to burning down our entire block. :) So instead we tried to teach him the happy birthday song and gave him all his favorite baby foods. He also played in the church nursery today, so take that orphanage attachment mess!

It’s days like these where I am floored at the thought of anyone giving up this child.

Raca. Fools!

Yes I know that was an impossibly hard decision and I can’t possibly know what they were going through, but that doesn’t change the fact that their decision was the wrong one. This kid is so amazing that thousands of mommies would line the streets waiting to fight over him. And I’m starting to really believe that better  physical  functioning like the kind an American family can provide with better doctors is not worth the sacrifice of a loving home from birth. (It’s not like he needed a heart surgery, he just has a physical limitation!) Almost two years of neglect can’t be rectified by better orthopedic treatment. He needed his parents. He deserved better.

But now what I’m going to write will seem to negate what I just wrote, because orthopedic stuff (like shoes and sitting in a gait trainer) is just what Roland got as his birthday present and he loved it. But I guess I just wanted to say that the fact that he gets to experience better functioning through modern medicine now in no way makes up for what he went through. Only God can redeem the mess that special needs kids go through over in Eastern Europe. Ugh. Part of me just feels a bit guilty that the trauma of losing his parents the day he was born directly led to me (with my orthopedic connections) getting a most precious son.

So sorry, back to the shoes.

The best gift we gave him (besides a home and family and to a lesser degree, kitties) was shoes. Happy birthday baby! Last Thursday I noticed that after this last set of casts his feet are really starting to be “feet shaped.” So as a lark I tried putting some shoes over them. I used Laelia’s old shoes that happened to be boy shoes. They are nothing special and in fact they are in no way functional as they get in his way. But wow was this boy happy! He just stared at his feet and looked so proud of himself. It hit me that these were the first shoes he had ever been able to wear in his entire life. And he just couldn’t stop staring at them and grinning!

The next day I took it a step further. I dusted off the ol’ KidWalk (a gait trainer with a seat) and gave him the feeling of standing in those shoes. I swear, I could have given him ten birthday cakes and a million dollars and not made him nearly as happy as he was just standing in his big boy shoes. Here’s his first “step” kind of.

Mostly he would try to lift his foot (while not weight bearing at all) and get super excited. I would push the KidWalk a bit forward and he would  squeal  with delight. It was pretty precious. Then I’d push him a little ways and when we’d stop he’d say, “Ta da!” Like, “Look at me, Mom!”

After that hard work he fed himself a snack using his new bendy arms! What a big boy he is!

We also tried reading him some books. *sigh* Roland is really not the sit-and-listen kind of child so he mostly just competes for attention with the book. (Video here.) And sometimes he’s so annoying while I’m trying to read to Laelia (required for school) that he must be chased and caught and head-patted into submission. (Video here.)

Haha, Roland just grabbed a wet wipe off the table and made the “blow nose” noise with his mouth. That never gets old. Have I shared that video? Here it is.

Okay I’m off to play with my kids. Laelia would like to point out that she just had a birthday too so they are both birthday kids. :) I said that was good to know because I was just about to go chase down, catch and tickle mercilessly any birthday kids I found! (She has since run off screaming. Gotta go!)

Happy birthday Roland!

We love you.

First trip to Philly with Rolly

Sunday, September 23rd, 2012

I haven’t had a ton of time to blog, but thankfully my friend Julia already did for me. Click here to read her blog and see pictures of all our kiddos.  We hadn’t seen Julia in person since Aaron’s first trip to Philly right before he got his first casts. Now Roland was getting his first casts and we run into them again. Every time either of us adopts a child who needs serial casting we’re sure to run into each other. ;) Julia and Rob and their boys are part of our AMC family. And Aaron and Laelia were flirting something obvious.

Aaron: “Laelia wants her water, but I have to get it.”

Laelia: “Push me on the swing!”

Aaron: “Gotta go.”

(Video here.)

At one point she spilled her water and Aaron ran to get the towel. Amy was already carrying it over but Aaron convinced her to give it to him. He triumphantly brought it to me to clean up the water. :) He even helped Laelia stand up using the step in the living room. He got down and showed her over and over how to do it and then cheered her on. I think Aaron enjoyed being the more mobile one for once and Laelia enjoyed being the center of attention (For once? Ha!) so their relationship works well. ;)

We were invited over for dinner at Amy and Adam’s house. (Here’s Amy’s blog.) Amy and I have been chatting lately since we learned we have both adopted out of the same orphanage. I was so glad for the Facebook correspondence, but it was even better to sit down with her at her kitchen table for some one on one. All I can say is that if you’re feeling something about adoption you can bet another mom is too. And it doesn’t take super human beings to adopt, just us.

We also got to meet Susanna and several of her children. (Here’s Susanna’s blog.) They are the family that adopted little Katie, who at ten years old was only ten pounds when they adopted her.  My husband and Susanna’s son, Daniel, had a long conversation about math. I think my husband would be up for adopting again if we could adopt Daniel. :)  I’d have to put my foot down since theoretical math conversations all day long would not be good for my brain. ;)

Roland and Katie

Ball fun!

AMC reunion

Backing up a bit. So I had to work late into the night before our trip since it was my last day of work and there was a lot to do. I packed our bags two hours before we flew out. Oh and of course my dumb cat with the feeding tube decided to claw the tube out of his neck the day before. He was going to spend the next few days at the vet while we were gone. And now he has a big hole in his neck. That cat… Just what we needed. More stress.

Dumbest cat alive won’t feed itself.

Roland did better on these flights than the long flights home from Ukraine. It is amazing what a month of love and bonding can do. He was still cranky and tired, but clung to mommy instead of wiggling out of my arms and throwing huge fits on the floor of the aircraft. Our first flight was uneventful, but the next flight was majorly delayed. An air conditioning unit had blown a hole in the side of our plane and finding us a new plane took several hours. And  Roland had a major melt down during what turned into a five hour layover. He cleared two rows of seats in the waiting area. Seriously. Some people just quietly got up and found other seats. Others grumbled under their breath. My boy has lungs! (I need to take him to the DMV so he can clear the line for me.) At one point all he wanted to do was run (crawl) away and go get into other people’s bags. I made a make-shift leash and attached it to his shirt. He thought it was great until he realized he could no longer reach the other people in the waiting area and smack them. (Hitting is his new way of saying, “Hi! My name’s Roland!”) This led to melt down city, with the added effect of looking like he was freaking out over being chained up. Thankfully another passenger brought his one year old over to play. (Parents get it.) Actually it was really good for me to see that this one year old acted a LOT like my son. I realized that even though Roland turns two in 21 days he has a mental delay and I need to treat him like he’s still a baby. Watching the other little boy smack the stuffing out of our toys put Roland’s hitting in perspective and caused me great relief. I’m sorry but I have only ever parented one mild, gentle creature before; I know nothing about this boy business. My default is to over-react every time with, “Oh no, you think this is orphanage behavior? Is he violent? Will he need therapy?!!!”

We have since made high-fives okay and if he hits we say, “Oh not there, here!” and put out an open hand. He happily smacks away.

Okay so back to the miserable trip. We arrived at our hotel around 4:30am and still had to eat dinner. McDonalds is open 24 hours, but it turns out that neither of my smart children will touch McDonalds so we made the oatmeal I brought. At some point I realize it’s past 5:00am and we need sleep.

The next thing we know we wake up and it’s noon and we realize we have not checked out of our hotel room! So we call the front desk and the lady says, “Oh no, you checked in this morning, you have until tomorrow to check out at noon.” Yay! That’s like two nights for the price of one! It turns out she was new (and wrong), but they honored what she told us and gave us the next night for free. (Even though the next morning two room service people were startled to see us and tried to kick us out.)

So we didn’t check out (yay!) and instead went over to DuPont hospital in Delaware to meet Dr. Rahman and the WREX team. They watched Laelia play, took some little measurements of her arms and then strapped her up to a WREX. They are making one for her that will be ready in a few months. Laelia is excited!

Click here for the video.

I was impressed at how knowledgeable they were, and how willing to help Laelia they were. Her triceps are tight (she does everything with them) and they were adjusting the WREX to help loosen them up. I felt like I was on Team Laelia and we were working together for her. (I wish IEPs still felt like this.) I went into the appointment feeling like I needed to show we qualified for this, but they were just happy to help her. One of the guys held her upper arm firmly and asked her to bend her elbow. I was just about to explain that she didn’t have any biceps (required to do that) when she moved that little elbow a slight bit. Turns out she has a different tiny muscle (he explained which one) that did that for her and he noticed it right away. Wow. I’m used to knowing more about my kids than the doctors. Not this time.

The next morning (okay afternoon, but our schedules are totally wacky at this point) we headed over to Philadelphia Shriners. Laelia and Roland were really good for their appointments. Roland did not like to be measured with the “go-knee-o-meter”, but he calmed down right away. Laelia loves Dr. van Bosse and was ready to show off her walking skills. (Of course he was ready to sing her praises to all the other doctors.) She gave him a little bear we had picked up for his little son. It came all the way from Ukraine.

Laelia was also happy to avoid casting. She’s walking so well that they want to let her be mobile, continue to let the plates in her knees do their job and we’ll adjust the braces to  accommodate  her re-clubbing foot. So an easy appointment for my little girl. Turns out that when standing her knees are 15 degrees from straight instead of the 5 degrees when she’s sitting. To fix this they add a strap to her KAFOs. They didn’t have time to fix them while we were there so they’re mailing them to us on Tuesday. (It’s a long wait for this mobile little girl!)

She also got her x-rays like a pro. She told the technicians all about how she used to cry (very true) and how her mom used to cry (not true) and how everyone was sad (just her), but now she’s in kindergarten so she’s practically an adult and can handle silly x-rays. :)

While waiting for Laelia’s wheelchair to be fixed (they fixed it despite the fact that it’s not from them) we ran into the arm doctor: Dr. Z. (The Z stands for Zlotolow… but I know him by “Dr. Z.”) Dr. Z recommended we cast Roland’s elbows and do them one at a time so he’ll only be in three casts instead of four at a time. If he were a lot less mobile it wouldn’t matter, but to bind all his limbs would be mean to this active guy. We’ll begin casting the elbow in a week and a half here in San Diego. But the funny part was when Dr. Z walked in the room and my husband whispered to me, “Mark Ruffalo.” Totally! Am I right?

Also while we were in PT we let Roland run loose with a walker. He was knee walking for the first time ever and he loved it! Click here for the video.

Roland had had x-rays done before we came to minimize the poking and  prodding. We found out he needs his clubfeet casted (duh), possibly two tendonotomies  on them (two?!), his hips need a surgery (but NOT the awful osteotomies that Laelia had, just a release) and when he’s four he’ll get his knee surgeries. We’ll either get him in fixators (one at a time) or do releases and 8 plates like Laelia had done. It totally depends on the contracture severity. (Please please please no fixators.) First things first is clubfoot casting. That’s the Ponseti method for you AMC pros.  Roland was pretty good for the right leg and mesmerized by the wrapping. Then the left leg he started to panic since that one was getting a good stretch.

Then he cried for the next couple hours straight.

We had planned to visit the other few AMC families while we were there, but Roland was really not doing well. So since he is so new to our family and to medical treatment I felt I had to go someplace safe and just hold him. There was “no room at the inn” so to speak as our sweet deal with the hotel had run out and the Philly Ronald McDonald houses were full. So we drove back to Delaware to stay at that Ronald McDonald house there. (About an hour’s drive.) It was really nice.

Roland screamed all night long. No one slept.

He would jerk and then scream. Since we were all sleep-deprived zombies we didn’t really notice (care?) that the jerk always came first followed by the screaming. Lucky me got stuck with him in my bed so every time he screamed I would rub his back and comfort him. It wasn’t until we were on the plane and he was still doing the jerking thing that I started to worry. He would be sound asleep and then jerk or spasm (or convulse? or seize?) and then cry until I comforted him. Then go right back to sleep. Repeat and repeat. Now it’s scary because he was diagnosed (we had believed incorrectly) with convulsive disorder while in the orphanage. They also gave him something to get him to sleep in the orphanage, and for the first time we had given him something to help him sleep (and reduce pain)! Could it be? Is there a drug connection here? We discontinued the Tylenol with Codine immediately just in case. To my surprise the screaming stopped and the jerking stopped. Oh my goodness, was it the pain meds? Or just the shock of his first casts? Or did I happen to stop meds at the same time he happened to get over it? Was it really convulsing??? I have no idea, but not being able to give him pain meds is a bit of a scary thought as he has surgeries in his future.

I took this video on the plane. At the 52 second mark his body jolts and that was not me or the plane  turbulence doing it. He jolts. Wakes up. Cries. Then goes back to sleep. Anyone have any idea what that was? It happened a LOT. Just like that. Seizures?

When we finally got home it was near midnight. While on our lay over the vet had called and told us that we needed to put a feeding tube back into our cat since force-feeding was not getting him enough calories to survive. That surgery would cost $900. There’s no way we could afford that (as we’ve already sunk money into this cat already and now I have no job) so we called back and tearfully said, “Just make him comfortable. We can pick him up on Sunday.”

Since then we’ve gotten the cat to eat a little and been able to keep his medicines down him. We’re not telling the kids how bad he is just yet.

I have never been so happy to see my own bed. We put a sleeping Laelia in her bed and a sleepy Roland in his crib. I just slithered into bed like a snake and Charley even rubbed my back for a while. It was heaven, until Roland started to cry and Charley’s place in bed got  usurped  by someone younger and cuter. What can I say. ;) *sigh* I was passed exhausted, but thankfully he was doing better even without the pain meds. Charley got a full night’s sleep in the next room and was able to take over a lot of the parenting the next day because of that. So I’m happily blogging while Charley does all the heavy lifting.  Life is good! :)

The history of Laelia’s knees

Wednesday, May 23rd, 2012

The history of Laelia’s knees.

Once upon a time Laelia had bent knees. (Bent = flexion.)

We tried serial casting, daily stretches and finally KAFOs (knee ankle foot orthotics)  to try and straighten them out.

When we got down to 45 degrees flexion she was able to stand with KAFOs!

Even as we stretched her nightly and the KAFOs pushed her legs straight, those  stubborn  knees were still stuck in 40 degree flexion.

Then Dr. van Bosse did Laelia’s knee surgery to make her knees straighter. (Straight = extension.)

The surgical releases allowed her to gain about 15 degrees of extension overnight!

Still I was a little disappointed that her stubborn knees were still a bit bent.

But with the eight plates inserted we watched her very slowly gain a few degrees of extension every month. This picture is just two months after surgery!

Then last night at dinner I watched Laelia push her knee down to 0 degrees.

That’s perfectly straight.

PERFECTLY STRAIGHT!!!

Now I don’t have a  goniometer, but that looks like 0 degrees to me!

When she let go it was still within 5 degrees of perfectly straight!

They still bend a little when standing, but we are very happy that in three months we’ve gained almost ten additional degrees of  extension  with the eight plates! That’s amazing!!!

Praise God!

Thank you Doctor van Bosse!!!

I love it!

(Click on this picture to make it bigger and more readable. You don’t want to miss this!)

 

 

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.

 

Recovery

Thursday, February 23rd, 2012

Standing kid!

Happy kid!

Sorry I have not posted sooner. We’ve been busy bees over here lately (including dealing with an outbreak of bees in our living room). Laelia’s recovery has gone a bit better than I expected mostly because I expected the worst. It’s been three weeks since knee surgery and she’s still a bit tender. Laelia’s  been getting physical therapy every day (at home by me) and doing  hundreds of steps a day using her crutches. In order to do that I had to redo her heels. She’s straighter now, and that has made her slight leg difference more noticeable. Three attempts later I think we finally found a good height for both heels using wooden dominoes and duct tape. Of course this will all change again in a couple weeks when she gets her leg braces.

 

On March 5th we’ll be in Philly getting casts  off and putting  KAFOs on. She’ll have to wear the KAFOs (leg braces) 24/7, even to bed. That will be hard, but we’ll get through it.

Laelia got a card in the mail the other day from all her Cubbie friends at Cubbie club. So cute! She also got cards from her school friends. Laelia was approved to go back to preschool, but only for two hours a day (and no bus service there).  Her friends had missed her! It was so adorable!

Our two biggest issues during Laelia’s recovery were hair and eating. Okay so physical therapy and pain management are the real two issues, but those were expected. Eating and hair were  just hard for no reason.  She hated taking her medicine. I hid it in everything: yogurt, ice cream, smoothies, pudding, apple sauce, etc. It had a strawberry flavor already so that limited the things I hid it in. Giving it to her straight made her throw up (a gag reflex), and putting it in her food just made eating suck.  Laelia was too darn smart about it too. She would finally eat only the yogurts I brought her so she was eating like five yogurts a day. After a week (we gave her meds for six days)  she said, “I knew the medicine was in the yogurt, Mama.” Then she rattled off  every food item I’d ever hidden medicine in. I asked her if she knew because she could taste it. She told me, “I  didn’t taste it, but I knew because of your face. And you made me eat every bite.” But the reason she never confirmed it with me was because she was afraid if she knew it was in there for sure she’d have a gag reflex and  throw up. Smart kid.

With her hair we just started spending money on really good conditioner and calling it a medical expense on our budget. It took 40 minutes to get the knots out everyday. The reason is that she would sweat because of the casts and being confined to a bed so much. Then she would roll back and forth on her head, for comfort and some out of boredom. It just made her hair a tangled, knotted mess that stuck straight up. I had regular conditioner and special conditioner and spray/leave-in conditioner. We had to take the microwave off the kitchen  counter to fit our daughter on there length-wise and then wash her hair in the sink so her casts wouldn’t get wet. Here’s some before and after shots.

That last picture there (post beauty treatment) is  Laelia showing Uncle Phong her untangled hair. Uncle Phong is engaged to Laelia’s Aunt Linda, although in preparation for their engagement and eventual wedding we’ve had Laelia calling him “uncle” for probably longer (and earlier) than anyone was comfortable with. Hehe.  :)  (Click here to see the website my husband did for them to celebrate their engagement. I feel that link should come with a warning of sorts. Eh you’re on your own.) Laelia is going to be the flower girl in their wedding! She’s practicing walking now, and soon we’ll add throwing flower pedals while walking to her physical therapy regimen. ;)

And for those of you who were praying she’d get over her cough and be able to do surgery, we can finally share one of the reasons the timing was so important to us. My husband is donating his kidney to a person who really needs it and may die without it. If Laelia’s surgery was postponed then Charley’s surgery would have to also be postponed. Obviously that wouldn’t have been a good thing. But everything worked out. So here’s our new timeline for life events since Laelia’s surgery worked out.

New timeline:

March 4th – Laelia and I fly to Philly

March 5th – We get her casts removed and her KAFOs.

March 6th – Physical therapy in Philly and KAFO adjustments.

March 7th – Fly home from Philly.

March 12th – Doctor appointment for Charley.

March 20th – Kidney removal surgery for Charley.

March 20th until around April 20th (or 30th) –  Charley’s recovery.

Early May – We hope to travel to adopt our son.

Early Summer – We bring our son home.

The queen of interruptions.

Thursday, February 9th, 2012

Standing tall!

New height: almost 38  inches. New height with crazy bed head:  a good 39 inches.

Haha! This is what happens when your broken camera takes five minutes and two battery changes to take  a picture.  We get a fish face that got tired and turned into a weird Mary-Kate and Ashley pose! Hahahahaha! And the wild hair gets tamed every day and still looks like this.

Okay Laelia has given me twenty minutes to blog. The little queen is being gracious today. I’d better write something fast!

It’s been a hard week, but as with other major surgeries it’s always  one week of bad (the first three days are terrible), then one  week of hard  followed by  a lifetime of permanent correction. The difference here is that there is hardware inside Laelia’s knees that are always working. Last time she had something in her bones, it was simply to hold them in place. Now it’s actively working to straighten her knees. This will be harder than usual, but she’s excited to have straighter legs. They are so straight now that she can’t touch her toes! Her poor OT and I will have to re-teach her her how to put her  pants on. :)

Unlike her other surgery where she was so “breakable” afterwards, this one requires her doing weight bearing ASAP. And she started standing the next day after surgery! It wasn’t pleasant, as you can imagine, but it wasn’t impossible.

Laelia is interrupting me to tell you about the pirate. She saw a man with a long beard in the waiting area and she yelled, “Mommy! A pirate!” She was completely thrilled. I wasn’t sure how to explain he was Amish, so I just let her think a pirate was there with his kid. Even pirates  need health care.

Speaking of interruptions, Laelia is the queen of them. This week it has been just me and her all day every day. Today she’s letting me blog, but only two minutes at a time before, “Mama my leg hurts! Mama move my pillow please! Mama I want a cookie! Mama I threw the batteries out of the remote again! Mama I want to watch Tangled for the thirty-sixth time!” (Not exaggerating there. 36 times in eight days. Tangled is the new Finding Nemo.)

Oh and I made her cookies. It was a nice break to bake something when Charley got home. Laelia wanted a red cookie, but for as much red food coloring I put in the cookie dough they still came out light pink. So I added a ton of blue and green to it. That made it pretty dark colors.

Three guesses what color our poop is now. Oops.

Laelia is interrupting this blog post again  to tell you that her imaginary friend was flying the plane to Philly! (The first plane ride.)  “Guy” has been Laelia’s imaginary friend for years. We don’t know where she got the name from since we don’t know anyone named Guy. But Chelsea made Laelia a tangible version of Guy that we accidentally left at home along with her sandwich for the plane and her walker that we had to return to Shriners. So she was sad, but when they announced the pilot’s name was Guy she was thrilled. I told the flight attendant that it made her day. :) Guy came after all. And he flew the plane!

Okay Laelia is taking a little nap. Time to blog some more! Interuption free!

She wasn’t really asleep. Now I’m back.

Okay she promises to sleep now…

So now that I have my blog to myself again, I wanted to briefly talk about Laelia’s care. Taking care of a little one dealing with discomfort or pain all day, every day, without breaks, who screams for you when you take two minutes to use the bathroom (ahem)  is one of the most rewarding jobs I’ve ever done. And I’m serious. I’m behind at work, laundry, bathing and I’ve all but declared email bankruptcy since I don’t see me even reading all of them, I’m a day late at planning Laelia’s school meeting and I don’t even have a doctor’s note yet, but it’s rewarding work. Sometimes I can use my magic to make booboos better. Sometimes I can distract her out of losing it. Sometimes my cuddles are more powerful than surgery cuts. And often I just hold her and we cry together. But every day she gets better and better and it feels rewarding.

Our week of bad is over. Now the week of hard begins. Physical therapy gets kicked up a notch. Respect and no whining (and using the potty) get reinforced. But hard is not bad.

We have a gal living with us since she couldn’t stay where she was. She’s looking for a permanent place to stay. I was worried that Laelia would keep her up all night (and she  has a bit) and that  it would be stressful. But it’s been really nice. Our house guest does dishes for one thing. :) And Laelia looks forward to seeing her for a bit every night before bed. It’s been a blessing.

Our first full night home was Monday. Lois from our church brought us a meal. It was the first real thing I’d eaten  that day. It gave me the strength to stay up until 2:00 am finishing up my work from home and taking care of my daughter. We got another meal last night too. It’s been a life saver. Truly.

Laelia is interrupting to ask if I’m stiiiiiiiiiiillll blogging?  Now she wants to say that she hasn’t taken any pain medicine and she’s feeling better! (I snuck some into her yogurt before bed, but she doesn’t have to know that.) She is going all day without pain meds now, and just getting a half dose before bed. She says her legs are annoying right now. I’ll take “annoying” over “painful.”

Thanks everyone for your prayers! I feel like lately I’m always saying thank you, but I don’t mean it any less. Thank you.

Gotta go. The little queen is wanting someone to play with. I tried to tell her that that wasn’t exactly twenty minutes with all the interruptions, but she said she counted in her head. To what I wondered. “To twenty! Lots of times!” Ha! I tried to give her a math lesson but math hurts her legs. Yeah. *sigh* I’ll add that to the list of intangible things that hurt your legs, spoiled little queen. :)

I wuv her.

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. :)

My pretty girl

Tuesday, January 24th, 2012

My pretty girl.

Doctors told us ugly things.

Then we met this guy.

And started doing lots more PT.

And OT!

And proved them wrong.

 

Now we’re leaving this Sunday to fly to Philadelphia for knee surgery on February 1st.

Which means no more knee standing for a  while.

And pretty girl goes back into casts.

And we’ll see lots of this face.

But in several months when all is said and done she’ll be able to do this:

(Photo credit.)

And *maybe* this:

(Photo credit.)

And why the heck not:

(Photo credit.)

Well, okay she’ll be able to walk better and have straighter legs. :)

Did I mention we leave this Sunday?!?!!

We need this:

(Photo credit.)

(But I’m tempted to make that last picture someone sleeping with chocolate in one hand and heavy medication in the other. :))

High Heels!!!

Saturday, December 3rd, 2011

Laelia’s first pair of high heels! :)

Getting ready to do the princess walk with her pediatric crutches!

She walks much better! Click here for the video!

And she stands/balances much better! Click here for the video!

So after: 1. seeing  my favorite  AMC’er with wedges duct taped to his shoes, 2.  getting an email from someone in our AMC support group telling me she saw Laelia’s video  and that I need to put a 1 cm cork or something under  Lali’s heels, and 3. a random person saying, “You know with her knees bent like that  it would be hard to walk,” I FINALLY gave the girlie  some heels. :)

But if her doctor asks then we call them “orthopedic wedges.”  That’s just ‘tween us girls. *wink*

Knee surgery is… soon

Sunday, November 27th, 2011

Many of you know that our next surgery is going to be on Laelia’s knees. Well now it looks like we are officially scheduled for it, and it will happen earlier than we first anticipated.  It’s now  February 1st with a follow up in  early March.

So if you missed it: Knee surgery is FEBRUARY 1st! Yeah I know! We pack up to leave just a few weeks after Christmas! (Just breathe.)

This surgery is going to be much harder than her last one (which was cake). I want to explain it clearly so you all know what’s coming. I’m even open to questions. Just from writing this post I thought of a few myself and have emailed Laelia’s doctor.

But first, why this surgery? Laelia was born with arthrogryposis (joint contractures making her joints stuck). Her knees came out of the womb in flextion (meaning bent, opposite of extension, meaning straight) and bloody from rubbing against my internal organs for months of my pregnancy. We’ve stretched them for four years, casted them and put them in stretching KAFOs. We did a pretty good job too. She was born so bent that her feet touched her thighs and now she’s pretty straight. If her legs had stayed as bent as they were without all our intervention we would have put Laelia in external fixators. (And I know families who have done extensive therapy on the knees and still had to do that option.) (And yes that link for external fixators is just a Google search. :)) But because she’s now at less than 40 degrees of flextion  in both knees (closer to 25 actually!), she instead will get (I don’t yet know how many)  releases  and then two  eight plates inserted for each knee. These plates will stay in and encourage her legs to grow straight over time. It’s a process called “guided growth,” and it’s shown specifically to help kids with neuromuscular conditions like Laelia’s arthrogryposis.

The plates are drilled into the bone to be removed at a later date. We just got  her  hip pins out and now  she gets more hardware in her bones! Yippie hurray (sarcasm).

The surgery is five hours long. She’ll be in full casts for a month followed by full leg braces to be worn  24/7 for a few weeks after that. There will be hard daily therapy in there  too. That’s about six weeks of HARD (“hard” being a noun here). Six weeks of struggle and adjustment. She’ll be out of school for over half of that. Around mid March or early April  she should be pain/discomfort free depending on the braces.

This is the surgery she was going to have around her next  (fifth) birthday in October. Because it’s now in February this most likely means she will not have a surgery next year on or around  her birthday for the first time in her life! She can actually age without consequence this next year!

With another surgery looming and the last one so fresh in our child’s mind we’ve had a few long conversations about surgery. It is always amazing to me to hear Laelia’s own perspective on something. For example I know she hates having her blood pressure taken. She says, “I don’t like when the cuff hugs my arm.” So every time they get the darn blood pressure cuff out (which is a stinkin’ lot after surgery!) she starts to cry and then she requires I hold her hand. Well she started talking about the time they took her blood pressure twice. I remember this–I was there, but my version of it is so different it’s funny. A nurse came in and wanted Laelia’s insurance card so she could go pick up our medicine for us (which was really sweet of her). I let go of Laelia’s hand in the confusion and didn’t realize that the cuff had not worked and they had to do it again. In the time it took me to walk to my purse and fish around for the card, they had already taken her blood pressure again.  Laelia was fine and I wouldn’t have known it happened except for the nurse told me. Since blood pressure cuffs don’t terrify *me* and since it was already over and she was fine I assumed it was no big deal. But even though it was pain free and I was two feet away,  Laelia tells  a story of triumphant bravery in the face of extreme torture all alone and abandoned. It’s  pretty adorable when her eyes light up and she says, “And Mommy goed away! And they did it again! Again! And the cuff was lower on my arm. And I was a big brave girl! And I was all by myself. And Mommy didn’t hold my hand!” I couldn’t help but squeeze and kiss her over and over as she told her story. Mama’s big brave girl got ice cream. :)

Well we don’t bring up surgery with our daughter for fun, but because I want Laelia to have a voice in decisions about herself. Of course I always hope her decisions agree with mine and are therefore the “right” decisions. :) But after  Laelia voiced her preference loud and clear we have decided not  to give her sleepy juice for her  next surgery. They give this to children (orally) to calm them down before the anesthesiologist carries them away from their parents. It makes them loopy and giggly and fearless. Sometimes I joke that it’s just pediatric whiskey. :) But without it Laelia may  be  terrified going back for surgery without me. But giving her a choice in this matter may also empower her to feel in control and get through recovery better. The sleepy juice is not necessary or mandatory, but just a good idea. But Laelia doesn’t take medicine well and it’s often forced down her throat. So  Laelia asked me in a very mature way  not to have to do it again. She  explained how brave she is now after the blood pressure ordeal.  I’ve explained the consequences of this choice, but she’s unwavering. It makes me very nervous.

Plus I’ll miss that little drunkard!

I have this list of things I would love if people prayed for regarding Laelia’s next surgery.

1. That Mommy  can keep it together. We just did surgery (whine). Now we’re looking at two more trips to Philly and a hard surgery before our timeline. Ugggggggggggggggggh. She’s just now taking regular baths after her last surgery! She’s still in bandages! Don’t I get some sort of tropical vacation between surgeries? I remember that in the Mommy handbook somewhere…

2. That Laelia is once again first up for surgery that day instead of waiting and freaking out all day. (It all depends on the ages of the other children getting surgery that day. If Laelia is the youngest she’ll go first. If not then she may freak out all afternoon.)

3. That she can remain calm without her sleepy juice while carried through the double doors into surgery.

4. Pain management. Oh please oh please. And on a personal note for my marriage during pain difficulties. Laelia’s pain has a way of tearing at her parents’ hearts and making emotions raw. I think Charles would claw out his own eyes rather than let his daughter feel pain, even if it’s necessary and part of her therapy routine.

5. Casts–swelling, itching, painful, heavy, skin breakdown, fear of them slipping, pulling her legs, etc. A month of casts, followed by…

6. Leg braces worn 24/7 for weeks. This may be harder than casts, and I know she’ll beg us to remove them constantly. This is when life will get really hard. Also we live 3,000 miles away from the people making and adjusting the braces. So I hope they are done correctly the first time. And that will be a first and is unlikely.

7. Rest.

8. Peace. She’ll be scared.

9. Travel mercies. It’s two or three airplanes one way, and takes all day. Flying with a post-op child on pain meds is the worst.

10. Travel expenses.  (Surgery itself will be covered by Shriners.)

11. And lastly, although it should be more important but  it’s against my policy of living day to day, I ask that this surgery be successful. That her future walking is helped by this surgery. We’ve had a couple unnecessary surgeries before finding this surgeon that I’m still upset about. But I trust this guy. But just because it’s the best surgery from the best surgeon doesn’t guarantee success. I hope this helps her one day walk easily and without assistance. Although I realize that may never happen. I just pray it is the best for her.

Thanks so much!