First trip to Philly with Rolly

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! :)

3 Responses to “First trip to Philly with Rolly”

  1. Patricia says:

    Does he seem at all post-ictal to you after these? Groggy, out-of-it? He sure doesn’t look it in the video — wakes up, cries, immediately seeks you out visually, appears to make eye contact, constricts his brow and stops the cry but makes a very sad little comment. If anything, he looks very alert.

    Don’t think sleep apnea, he’s breathing smoothly right up to the point of the startle. Looks VERY like a “falling” startle, I will sometimes get these when very stressed, and will dream I miss a step, or my pillow vanishes, and I fall — wakes me up! Not repeatedly, though. Nor do I cry, though I might if I were only 2!

    OK, googling on “jerking when sleeping” led to http://en.wikipedia.org/wiki/Hypnic_jerk — and I notice that it’s associated with fatigue, discomfort and also opiates. Poor Roland, he hit the jackpot! I know that friends with funny reactions to specific drugs often find they do well with some but not others — you might find it useful to have a nice chat with a friendly anesthetist, pharmacologist, psychopharmacologist…

    I love the video of him on the walker, his laughter is so contagious! AND the video of Aaron with Laelia!

  2. C says:

    I’ve seen a lot if different types of seizures – lots. I can’t say I’ve seen every type, nor is that my specialty, but I’d be very surprised of that was seizure activity. Like Patricia said: his alertness and response afterwards…some people do come out of seizures alert, but not that instantly alert. It looked like a startle to me, too. Still, I’d share that video with a neurologist or other relevant “ist” if you can. Great job getting that recorded! It could turn out to be a HUGE blessing when you have to evaluate future meds. Poor little guy!

  3. Kristin says:

    It reminds me of that startle you get when you’re dreaming that you’re falling or whatever… Hopefully it’s resolved…

Leave a Reply