Archive for the 'bye-bye' Category

Laelia is on the move!

Thursday, July 5th, 2012

So I guess it’s time to announce that we received our travel dates to get our son and that we’re taking Laelia with us! We’re going to a country in Eastern Europe where there’s no wheelchair access (and lots of steps everywhere and uneven roads). Bringing a wheelchair is out of the question. We’re considering bringing a small stroller, but have yet to find one small enough to transport easily yet large enough to  accommodate  her KAFOed legs. But just when we were trying to figure out how we’ll go grocery shopping and visit the orphanage every day with a stroller, we discovered the Piggyback Rider. I saw it on a site that was trashing it for not allowing kids to run around. (Most people don’t have a folder in their brain’s filing cabinet for those with orthopedic differences. We’ll excuse them.) I linked to the Piggyback Rider on facebook and not ten minutes later (or more, who remembers) Grandma Geri (Grandma Christina’s mom) emailed to say she would buy it and send it to us!

The Piggyback Rider

Uncle Bolt called right as we were trying it out. Charley was hands-free for the call!

But he wasn’t Laelia-talking-to-Uncle-Bold-really-loud-right-in-his-ear free. ;)

At first Laelia’s hip contractures made her want to lean over like this.

Looping one of my belts between the back of the backpack straps (her dad wore)  and around her hips fixed the problem.

We went on a walk to test it out. After about 15 minutes our shoulders were sore, but it worked great. We can even run with it on and she stays put.

This is how we plan to travel while there. One parent will have a giant bag of stuff in front and Laelia in back. The other parent has all their stuff in back with her walking sticks  bungeed to the backpack and then another backpack  in front. Since we’re both hands-free, if we had to carry a bag we could do that too.

Laelia even got tired and was pretend sleeping here nestled into my neck. I asked if this was comfortable with me walking around still and she nodded into my cheek.

We cannot announce our travel dates publicly but we leave soon. My dad and his wife sold their MG (the car he loved) to cover Laelia’s plane tickets so she could come with us. We are bringing her to show everyone what children with arthrogryposis can do and that they are valuable and loved. There are many who do not believe this, and that’s how the orphanages get filled with AMC kiddos over there.

Taking her with us was a decision that we went back and forth (and back and forth) on. I’m happy to have her so that I can do her physical therapy every day since we have a routine at home that would be hard to train someone else on. I also would have missed her like crazy (selfishly) being gone from her for a month. This will definitely be one crazy summer (working) vacation!

After living there for 3-4 weeks we will come home without our son. There’s a waiting period once court is over. Then I’ll fly back after the waiting period alone to pick him up. During the two weeks I’ll be gone Laelia will need some sitters (since her daddy will have to work) and distractions. Please let me know if you can come over to our place and help my husband out! We’re thinking we’ll need some help in late August sometime, but return dates are up in the air right now.

Laelia is super excited to see her brother! So are we!

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.

Laurel

Wednesday, February 8th, 2012

This is Laurel. Her birthday is in August.

When they asked “Laurel” to pose for this picture, I’m sure that smile she gave betrayed her hope. Why else would they take my picture? They must be looking for my family! I know for a fact that hope starts to run thin near the finish line. There’s no family in sight. Not yet. And that’s a problem. Because Laurel  is  15, and that’s the worst age to be with no family in sight.

When I turned 16 I got my driver’s license, my first boyfriend and my first surprise party from my friends. It was the best year of my life. I looked forward to it with delight. Laurel thinks ahead to her 16th birthday with dread.

In her country upon her 16th birthday  two things happen: 1.) Laurel becomes no longer available for international adoption and 2.) she is placed in an  adult mental institution where she might be confined to a bed all day, everyday for the rest of her life  OR she will be out on the streets, forced to beg or her body to be used.

If you read this blog at all you don’t have to guess that Laurel has huge potential. You don’t have to wonder, “Will she be independent? Will she be mobile? Will she talk back to me like she knows everything?” Yes, of course. She has my daughter’s body, and my daughter’s mind… if it had been drug through years of living without a family to stimulate her.  She’ll need encouragement and family love. She’ll need to feel safe. She’ll need maybe a little more time with Mom than other kids before leaving to start her own life. But her life could be wonderful. Or it could end. In August.

I almost want to say Laurel has six months to live. And even though she’s not dying, it’s a true statement. Her life will end and hope will be gone in six months.

I learned today that a new $1,000 grant is available on top of anything raised through Reece’s Rainbow. My family is throwing in our fundraising efforts as well. If you are hesitating because you cannot afford an international adoption, then come up with another reason. We will help you. You’ve got us in your corner. Our son is in that  part of the world for crying out loud! Laurel has  us choked around the heart!  In fact, there’s a group we’re a part of  called Bring Hope to 12 in 2012 who have promised to throw huge fundraising efforts towards this child. She’s one of their 12, and will be the focus of interest for the entire month of February. Don’t worry about the money. We’ll get it. I know it.

Worry about the child. Is she yours? Right now only a family can save her. Just because she ages out of being eligible for adoption in, what, late  July?  does not mean she becomes an adult with any rights. We cannot send her a plane ticket and have her move in with us. (That was my hair-brain plan upon learning about her.) No, her fate is sealed. She needs rescue. Because of a terrible situation, a ridiculous system and some downright unintelligent rules she’ll be lost in a matter of months!

This is an emergency. Please share her link (http://reecesrainbow.org/26309/laurel) all over Facebook, Twitter and blogs. Share her story with the world. Help us find her family. I would consider this a personal favor to me. Thank you.

Time is running out.

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. :))

Happy Holidays!

Sunday, January 1st, 2012

We had a great Christmas and New Years! Here are the random pictures. Most of these pictures  were taken by other people  after our camera broke. We have bad luck with cameras!

Playing the piano.

Jumping rope. (Even though Laelia can’t jump yet.)

Making shapes.

Playing with Grandpa!

Getting ready to open presents!

After our 8 hour drive up to San Jose.

Showing off walking for Grandma and Grandpa.

Laelia’s cousin Levi steals her parents for  a bit!

Laelia’s cousin Abby!

Food!

Cousins Abby and Gracie!

Playing spoons. Laelia’s mommy being super competitive. ;)

Daddy cuddles.

Look at these goofy two!

Grandparents holding  two  of  their three  grandkids.

Family!

Grandpa cuddles.

Snake cuddles!

The Liberty Bell doesn’t ding!

Thursday, October 27th, 2011

City Hall!

I took Laelia to downtown today because I am crazy and like to get lost in cities whose roads make no sense and are rarely marked with road signs!

We actually saw guys putting   up a road sign. Great! Now do that TO EVERY ROAD!

I called my husband (who I had warned before hand that we were going exploring and when we’d probably be calling him saying we were lost) and he was in a meeting! He said he’d call back in ten minutes! Ten minutes! I almost ended up in New Jersey in those ten minutes!!! So I called Chelsea and she helped me find City Hall again down one-way roads and back alleys. She saved my life. Did I mention I get lost every time I drive in Philly? And that Philly sucks? Oh I have? Countless times? Okay well then. We did get to see Independence Hall and the Liberty Bell finally.

Laelia stopped to see the birdies.

The birdies were digging little holes in the ground.

Looking up.

“She’s saying hi.” (Um, Lali, that’s a boy.) “But she has a ponytail!”

“Guys I can’t see!”

Me: “Here’s the most important room in American history!” Laelia: “Okay.”

Aren’t we cute?

Here it is!

So Laelia charmed all the guards and park rangers by being so sweet and showing them all her card with a picture of the liberty bell and asking them if they knew what this was and then telling them she was going to see it! :) She talked about it non-stop. Then we finally see it and she says, “Okay…” (she’s all excited) “Go for it!”

Me: “Go for what?

Lali: “You ding it!”

Me: “Um, no we don’t.”

Lali: “You don’t ding it? Then what do you do with it?”

Me: “You look at it.”

Lali: “…..”

History is boring.

We’re off!

Sunday, October 23rd, 2011

I’m ready!

We fly out in half an hour!!! We’re ready! Looking forward to this two week trip  for the last week left me a zombie with  sporatic surges of panic.

(UggggggggggggggggggggggPANICPANICPANICuhhhhhhhhhhhhhhhhhhhhhhhhhhhPANICPANICPANICduuuuuuuuuuuuuuuuuuuhPANIC!!!)

One morning my husband found me just standing by the door with keys in my hand without moving. I knew that once I left home I would have to start preparing my final days at work and preparations for surgery so I just didn’t budge. :)

Oct 23rd: Today! We fly all day and arrive in Philadelphia at 11:30 p.m. We arrive too late to stay at the Ronald McDonald House.

Oct 24th: We move into the Ronald McDonald House and go to Shriners Hospital for Children at 1:50 p.m.

Oct 31st: Laelia is a bunny dressed  like a duck (yes I got that funny costume worked out last minute) for Halloween in the hospital. I’m going as… well let’s just say it was the scariest thing I could think of depending on who you are. I’ll post pictures when I get home in two weeks and  let’s see if you guessed right!  ;)

Oct 25th-Nov 1st: We have intense out-patient physical therapy everyday.

Nov 2nd: Pin removal surgery with the most talented Doctor van Bosse.

Nov 4th: Fly all day.

Nov 6th: Officially home.

Nov. 7th: School meeting and my first day of work.

Wish us luck!

Accessible with Grandpa’s Help!

Friday, September 30th, 2011

So Laelia was taking a nap after a ROUGH (I’m talking crying, hitting and biting) day of PT last Thursday. I was sitting on the couch contemplating how I was a bad mother while eating ice cream when I hear Laelia call out, “I don’t want a nap!!!” Okay, she was completely out cold when I carried her limp form into the house just twenty or so minutes earlier. So I did was any good mother would do, I hid I went and checked on her. Well I eventually checked on her. By the time I got to her door she was quiet again. Thinking she had gone back to sleep (and that there was a  God!) I went back into the living room to hang out with my dad and Christina. Well moments later I heard what sounded like a door opening. Sure enough that little Turkey was sitting in the hallway outside of her room with a big “I did it!” grin on her face.

And the world of napping changed forever.

Dad had installed the door apparatus while we were at OT/PT and hadn’t even shown her  how to use it! She got right off her bed and figured it out on her own. Stinker.

So now I have a child on the move!

Ask and the door will be opened unto you. Her new door knob and chain!


Let there be light! Her new light pull chain.

And lastly the video demonstration. Enjoy. :)

 


 

 

Back from Philly and Placerville

Tuesday, July 26th, 2011

Home again home again jiggidy jig!  Let’s not go anywhere for a while, shall we? I have three suitcases with scattered contents  migrating outward across my floor. Each has at least one scavenger cat all over it. My house could be the stage for a disaster movie.

Three weeks ago Laelia and I flew out to Kansas City for the AMC Convention. Well last week it was Daddy’s turn so he and Lali flew out to Philadelphia for a check up and x-ray appointment. (Did I mention that all of our flights were free? Besides one AMC clinic in Seattle, all of our medical travel since Laelia was born has been covered! Woot!) This is the first Philly trip I have not attended. I kept having to tell myself it was just a check up. And it was just a check up. And I did figure out how to micromanage the entire trip long distance. Hehe. But still. Leaving Laelia with her daddy is a terrifying experience for me. Not that he’s not super responsible and smart… he is,  but he’s also a space cadet. Every other phone call went something like this.

Him: “We arrived safely in Philly! Now where are the directions to the Ronald McDonald House?”

Me: “Um, what’s the ONE thing I asked you to print out because we don’t have a printer?”

Him: “Directions.”

Me: “And didn’t I call you to remind you at work to do that before you came home?”

Him: “Yeah, but where are they?”

Or,

Him: “Well we got a ride to the grocery store because, besides other things, Laelia just really wanted some animal crackers and kept asking for them.”

Me: “She went through the entire giant bag of animal crackers I sent you with already?!!”

Him: “Oh this bag marked, ‘Snacks’? Yeah I see it now. Oh this would have been helpful on the plane. Whoa, look at all these animal crackers!”

Add to that the fact that I did all the packing, compiled all the medical questions, safety pinned all of Laelia’s outfits together because  matching colors on little girls’ clothes confuses the poor man… well, *sigh* anyway.

So where was I? I was busy seeing my brand new nephew! So I flew up north to visit family in Placerville. I’m an aunt now! Yay me! And my sister and her husband are first time parents! So yay them too I guess. :)

I didn’t have much time, but I  made myself busy by visiting family, losing money at the  new casino down the road  (that my dad won back because Christina is lucky and I’m not), taking a three hour walk and coming home with my pockets so full of rocks that I couldn’t clean them out in time to answer my buried cell phone, cleaning my sister’s bathrooms and floors, making and eating ham sandwiches, ham with corn, ham with ham, more ham and ham with ham on ham, losing  to my sister  at Doctor Mario… a lot (you haven’t heard my excuses yet!) and playing and cuddling little Levi. Here are some pictures courtesy of my sister since my camera went to camera heaven.

Levi with his favorite aunt: ME!!!!

Teaching Levi to make faces.

And here’s the fish face!

Note the family resemblance?

Here’s Laelia at Levi’s age. Parents should keep their children’s cheeks away from me, apparently.

And while I was busy back home, Laelia was in Philly!

Laelia and Ronald and Ryan

Of course they ran into Laelia’s future husband, Ryan. He practically stalks her, you know. ;) Daddy and Lali actually stayed at the Ronald McDonald House in Camden, New Jersey this time and just commuted to Philly for their appointment. Their room was Harry Potter-themed–from broomsticks on the walls, Harry Potter books on the shelves and posters  or life-size cutouts of the characters everywhere. Each wall was painted a different Hogwarts color with a corresponding banner: Gryffindor, Slytherin, Ravenclaw or Hufflepuff. It was awesome. Actually every room at Camden’s RMDH is themed. The room they almost stayed in was 70s tie-dyed themed. There’s even a  Sponge Bob room!

While in New Jersey, Kiersten and Ryan took them to eat real pizza. Jersey style!

“Now that I’ve had my Jersey pizza, I want my Snooki tan!”

They saw the doctors and therapists on Friday for  Dr. van Bosse’s  AMC clinic. Laelia got her x-rays (lookin’ good!), some extra padding for her shoes and some magic pony toys (that my cats are always trying to swallow and kill themselves with). The physical therapist said to do more tummy time (like a baby?), hydrotherapy (I’ve called them but haven’t heard back yet), hippotherapy (called them and heard back… $25 a session?!!!??!!) and more physical therapy everyday. I’m not sure how we’re going to fit this all in. It’s a lot. A LOT. Let’s just say  I’m going to look for  stay-at-home jobs now.

And we’re adding new hip stretches to the daily routine.  Because we didn’t have enough stretches. Yay.  o_O

Then there’s the stressful paperwork dramas that must now take place. We are suppose to get  KAFOs but we have to get the script from a local doc (Philly docs don’t count in California) and then send that to insurance, and then to the orthopedist, so  it will take months I’m sure. And we’re suppose to start using her Kid Walk, but I can’t figure out what happened between steps 5 and 6 (better known as between the insurance auth step and the manufacturer step).  We also got the go-ahead to do E-Stim, although I have no idea how to find out anything about that… and it’s low on my list.

We also have a surgery date of November 8th. They want us to fly to Philly a week or two before that to do intense, daily out-patient physical therapy. After those weeks of hard work and the concluding surgery we’ll have a better idea of what to try next.

And since lots of people have asked about the surgery, let me back up. Last November Laelia had her bones,  between the hips and femurs,  cut through and rotated and then screwed back together like this:

So these screws or pins or clamps (I’ve heard them referred to as all three) need to come out. Then we’ll have to start over with PT.  Ugh. Well  in a way  she’ll be learning to do everything  she does now only with her actual hardware and not the metal hardware we added.  Osteoporosis is a major concern for AMC’ers, so the more weight we can put through those legs  now, the better. We already have her on a high protein and calcium diet which I think is helping. Or at least it’s SOMETHING. She eats eggs and peanut butter sandwiches and  protein (“chocolate milk”) shakes for her muscles, and she eats yogurt and supplements (gummy vits)  and other things with  calcium in them for her bones.  I know kids who have bones break just from the lack of weight bearing just from the amyoplasia (which she has) so I’m hopeful we’ll  escape that fate.

In other news we started physical therapy with new therapists today (Tuesday). The bad news was that we were (read: I was)  so desperate for a camera that we tried to get one for cheapo off Craigslist and ended up driving to Spring Valley to pick it up. And that’s where our car stayed. Bad alternator. Just great. So we  had to bum a ride to PT and then wait over an hour for a ride home. But  I like our therapists and think we’re doing the right thing.

It’s so weird getting new therapists. Every  year and every new therapist, we get a new evaluation. And my brain knows that these exercises are to test where Laelia is now, and not a test that she’s failing. But still my heart has not  wrapped around the idea that we’re not failing when, you know, we fail. So instead of hearing what the therapist actually says, “Looks like she’s a little weak here, let’s make it a goal this year to work on it!” I hear,  “Well Laelia FAILED the physical test. No A+ for her. BAD PARENTING!” :) Okay not really, but I have to make an effort to change my thought process here. After the tests Laelia looks at me waiting to see my reactions (because she’s hella smart) and I have to mean it when I tell her how good she did. She lights up like the Fourth of July when she hears she’s  done well. A+ for Laelia!

Well we just got back from picking up the dead car in Spring Valley. We now also have a camera we got on the cheap! Don’t know if it works yet. It came without batteries or memory cards or anything. *crosses fingers*

There’s lots more to say but I’m tired. Charley keeps telling me cute Laelia stories from his trip to Philly, but I told him he’d have to blog about it himself. I’m going to eat my weight in food since I have to fast tomorrow (feel sorry for my coworkers) for a blood test.

Ooh left over pasta! Bye!