Love is Kind!

Friday was the best day. We had our flights scheduled for 5:00 pm that day, but we were planning on delaying those flights because I didn’t think there was any way we could go home.  So when our doctor discharged  us at noon that day  I was shocked!    It had only been three days since her surgery, but  Laelia was already  doing so much better. She looked battle-damaged and weary, but her little imp smile had come back.  Shriners was wonderful and let us borrow a wheelchair for the trip home. (Our insurance is changing during recovery  and  wouldn’t cover it so Shriners just handed us one.) And they fitted us for a new  car seat that would be better for her wide casts and took our pink car seat in a  temporary exchange so we wouldn’t have to carry them both home.    

Car seat fitting.

Watching TV in her wheelchair. Mama is resisting the urge to pinch those cheeks!

Friday was a great visitor day! Just three days after surgery and she was already so so so much better! Plus we finally got to meet Tracey Schalk in person!

Tracey is on the right. :) We’d been friends online for a while. Tracey is great! Anytime there is someone with AMC in Southern California, Tracey inevitably finds them and sends me their contact info from Ohio! Tracey came to our room and gave Laelia a surgery present! Tracey and her mom, Cheryl, had emailed me a lot about Shriners in Philly and how to get Laelia care there. They, along with the support group (amcsupport.org), never lost hope  in Laelia’s future even when five doctors did. I was so happy to finally meet them! And I love the Dr. van Bosse Fan Club shirt! I want one!

Friday is also clinic day. So we knew a few other kids with AMC would also be there! It’s so rare to find kids with AMC, so it’s weird having so many in a waiting room! This really does feel like AMC Mecca sometimes. So using our new borrowed chair we went down to the forth floor. We finally met Tammy in person too! I recognized her from her facebook pictures. And her daughter, Sophie, and son, Ben, both have arthrogryposis. Laelia is Sophie’s “mini me.” When Sophie learns to do something (like drink from a cup without using her hands) then we see the video and Lali is soon to copy her. Sophie was so cute;  Charley was totally charmed. :)

When we were leaving the forth floor and waiting for the elevator, a lady I’d never met came up to me and asked if  I  was Laelia’s mom. I said yes. Then she looked over to spot my daughter smiling at her and verified that this was indeed Laelia’s family. Her name was Anna and she  wanted to thank us for our blog and tell us it had been one of the things that had helped her get her son with arthrogryposis in to see Dr. van Bosse! She had just adopted him from China! You can read their story here.  That was so neat! It gave me goosebumps!  And of course during their stay, Tracey already had them connected to another family there who had adopted a little girl with arthrogryposis from China. Wow!

We had to say goodbye to our new friends and pack up to leave.  We learned  what pain meds to give Lali and  how to change her bandages. (By the way, they didn’t make us go to a pharmacy to get her meds, they  just delivered them free of charge right into our hands!) Then Laelia announced she was ready to use the potty! So after getting a potty and  figuring out (with the help of a nurse) how to get her on there, and waiting through  five minutes  for the waves of pain to die down after  being picked up and transferred onto it,  she went poo poo in the potty!  I couldn’t have been happier!  What a great day! That may sound silly, but it was such a relief, and she looked so much more comfortable after that.  

At noon I ran back to  the Ronald McDonald house to check us out. I followed the check list and changed the sheets, made up the beds with the comforters, folded the blankets,  turned off the  heater, cleaned the bathrooms, wiped down the walls and vacuumed the room.    I made sure it would be perfect for the next family in our situation who would come for comfort and rest. Then I took the trash out to the dumpster, grabbed some Cheerios out of the help-yourself  pantry and paid our bill in full which totalled less than one day’s stay  at a hotel! Love this place!

Then we decided since we had two and a half hours to spare that we would drive the 40 minutes to the airport, drop off Mama and Miss Post Op, then Charley would drive downtown and return the rental car and take a cab back. This was an alternative to going downtown together and then having to take a shuttle back. The plan would have worked too, except for the meddling  traffic.  So last minute in the drop-off zone of the airport we had to move all our stuff into my bag in case we had to fly back without Daddy. Charley helped me carry the kid in her car seat, her wheelchair, our giant bag and a back pack into the airport and then he drove off towards downtown. I watched several people walk right past me as I slowly dragged everything at my feet one inch at a time. A couple in their forties  with one bag between them  stopped behind me and I thought they were going to help me, but they had thought I was in line because I was going so slowly. Then they complained under their breath about me being in their way and moved past me. A couple of security guys stood there and watched me. Finally I made it all the way to  check in–dragging a car seat with a kid in it,  then going back and dragging the bags then dragging the kid in her car seat a few more inches, repeat repeat repeat. It took me half an hour. At the front I set up wheelchair assistance for the rest of the trip and then waited for assistance. As I waited I worried about my husband who was now very late. An airport employee took my daughter (only airline employees are allowed to pushthe wheelchair) to our gate as I followed. Charley wasn’t at the gate either. In fact I was starting to steel myself for a solo flight home with post op kid who needed pain meds on the plane. Then I saw Ryan’s family and realized I wasn’t alone.  We found out that our buddy, Ryan, and his family would be on the same flight back with us! These kids are practically twins. So cute!

Going home with our read-headed  twin, Ryan!

Charley showed up minutes before boarding, then he took off to get a slice of pizza! That turkey. :)  Laelia slept on the plane like a champ, even though  she was somewhat restless, tossing her head around. But  right before our decent into Denver, Laelia woke up crying out in pain. Her legs hurt her and she was  grabbing at her casts, face contorted. We decided to unbuckle the car seat to lay her  across our seats and give her the liquid meds. She didn’t swallow them of her own volition so we had to lean her back and force it down her. That’s when we realized that the seat belt was stuck on the inside of this  giant, borrowed car seat. I was near tears and she was crying in pain and we considered cutting that airline  seat belt off her! The problem was that  the car seat back  was too narrow. So you can buckle it, but you can’t lift the darn flap to unbuckle it. We didn’t have this problem in the car since it was  a push button release.    It  took a long time to get it unstuck; Charley cut up his hand doing it. The whole time this guy sitting behind us kept saying super helpful things like, “His ears are just not used to the altitude, he’s fine Mom.” (Taking out our daughter’s earrings for surgery made her a boy no matter what pink dress she was in. And could he not see my child was in full leg casts???!) Finally we were able to get her out, give her meds and put her back. That’s when the person in the middle seat in front of us leaned his seat back and we saw that the seats went too far back and if the lady in front of our daughter leaned hers  back it would really injure her! So diving  forward, Charley explained our situation to the lady in front of us and we offered to switch seats with her if she wanted to lean back. She smiled and told us she realized the situation the moment she got onto the plane and had already decided she wouldn’t risk leaning back with that poor baby behind her. Whew.

For the next flight after a couple hours lay over we asked the boarding agent to move us to the front of the plane because of the leaning-back situation. He changed our seats, but it turned out that the car seat was too wide for the front seats with their fixed arm rests. So we had to switch seats with the second row (who didn’t like that they couldn’t get to their bags anymore) and the young lady in front of us was given free tv by the flight attendent  for the flight if she promised not to lean back. She complained, but agreed.  When we thanked her  and offered to switch seats if she wanted to lean back  she just said, “Whatever, it’s fine”  but continued to complain that  she’d had a long day of flying… childless, pain-free flying.  I wanted to smack her.    

When we arrived in San Diego I was so ready to be home. Laelia was due for more pain meds and I wanted to put her in her own bed to let her finally sleep soundly. Unfortunately the wheelchair assistance I had set up fell through. We waited 25 minutes for a wheelchair and the lady at the gate said, in effect, “too bad.”   They said it was too late for wheelchair assistance (after 11:00 pm) and the couple of pages they sent out over the PA  for a wheelchair were unanswered. Our own wheelchair was downstairs in checked baggage so we were stuck. Charley started to slowly drag her car seat down the airport corridors. After ten minutes of dragging we saw an airline guy walk by with three wheelchairs! We were relieved and  waved him down  to explain through the exhaustion that one of those was for us. He asked what airline we were on and when we said Frontier he explained that these were for American airlines and he left us there. So we dragged her in her car seat the long length of the airport. Every time she went over a bump she cried out in pain and I snapped at her dad. I was ready to kill someone at this airline. I hate traveling to Philly. Hate it. Hate it. For every airline person who is kind to us, ten are not. Seriously.

When we  got to  our bags downstairs, Adam was waiting for us. He lifted  Lali’s car seat up with her in it and carried her right out to the parking lot! Adam drove us home and we walked in the door to, not joking, this:

Clean!

Clean! (The stuff on the table I put there afterwards.)

Labeled tubs magically appeared in my cabinets.

Everything was organized!

No more “junk” drawers!

The kitchen cuboards were cleaned and organized. A spice rack appeared in there!

Laelia’s room was the best part!

It was so much roomier with the crib stored. The cubbies were new and everything was clean! Even all her clothes were folded! She loved it!

The night before we flew to Philly, Lauren and Chelsea had come over to clean. Lauren  tackled my kitchen like a pro while Chelsea took some notes. I left a key because  Chelsea said they  were going to “finish up” while we were gone. Well apparently for the five days we were gone Chelsea and Adam and Brenda and Laura and Dorothy cleaned and organized our whole apartment! I can’t express how wonderful this was! It was like walking into a stress free environment after days of stress! At first when we  stumbled in Friday night I did noticed it was clean and I was very thankful,  but it wasn’t until I gave Lali her medicine and put her to bed that I was able to  relax and notice my surroundings fully for the first time.  We slowly realized the extent of the work put into our place.  It is rearranged to make best use of space. Things were purchased that we didn’t own to make it more organized. And Charley and I went around opening random drawers  that were all completely cleaned and organized!  It was like Christmas morning! This was  an overall giant cleaning/organizing   job that must have taken hours and days and so much effort–I can’t even imagine!

Laelia slept for ten hours that night, making it the longest stretch of sleep she had gotten in almost a week. Her record before this was four hours. Being in her own bed, surrounded by her toys instead of monitors, did the trick. It almost made flying that Friday (a crazy endeavor) worth it.

In the next couple of days (through the weekend) we had some fun worries when her incision site decided to make us needlessly worry.

Is that spot gangrene?! Does she need antibiotics? Nope. It was fine.  But we panicked and  called the doctor anyway.

What in the world is this large purple thing that’s hard to the touch and popped up over night? Turns out it’s bleeding beneath her skin. It hurt her one morning and she had me rub it. Then this happened. Doh. So I emailed this picture to Dr. van Bosse and got an email reply immediately that calmed my fears. (What doctor emails you back? And quickly?!!)  

So the above two pictures were the cause of some panic, but looking back on this whole adventure Laelia is healing well, recovering nicely and on track for getting her casts off on January 7th!

Also one thing that made everything better, and this was my life saver, was apple sauce! Her liquid meds are best taken with apple sauce because it  covers up the taste beautifully! I haven’t had to force anything down her throat since discovering this! We tried mixing it with other things, like chocolate pudding, but nothing works as well.  This is so  much  better than having to squeeze those little cheeks and make her choke! Apple sauce. God’s gift.

Laelia hanging out.

Today marks exactly one week since her surgery, and I can’t believe how miraculous this  kid bounces back from this stuff! She’s doing well. We can now pick her up using a blanket under her for support and it only causes her a little bit of  fussing that she quickly gets over. As of yesterday (Monday) she went all morning and afternoon without pain meds. Now she’s down to taking a little something before she sleeps. She’s  got  that cute little personality back and she is already wanting to help with laundry again and play with her kitties. It’s gonna be okay. People told me it would be “a hard week,” but I never knew exactly what that meant until now. Yes. It’s a hard week. The first 24 hours are the worst, by day three it was a lot easier on her and just seven days later she’s singing and laughing and playing again. I have a lot to be thankful for  right before Thanksgiving.

2 Responses to “Love is Kind!”

  1. Anonymous says:

    yep. still terrified! doyou recommend putting Sophie in our room on the main floor after this procedure? her room is in the basement and we would have to carry her up and down the stairs several times a day. and Let me tell you Delta might not have a great rep with some people but they are 180 % nicer and more helpful than frontier! they do anything for us. including picking up and carrying a child into the plane, carrying our bags, staying with a child so I can take the other, folding our stroller so I dont have to go back out again, stopping traffic flow of incoming passengers so I am not long seperated from the waiting child. they are WAY BETTER than frontier. The first flight on midwest left me in tears. the second on frontier was a step up. and Delta? THE BOMB!

  2. Randi says:

    I’m so glad you guys are home, and that Laili is starting to feel better. I know it took a lot of strength to get you through last week, but you did it! Your a strong mother Alexis, keep up the good work!

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