Thursday, May 27, 2010

The car seat challenge

A tip for those having trouble fitting their kiddos into car seats:

Quinn's giant cast does not begin to fit in our car seat. The car seat expert at Children's Hospital told us we needed to find a local expert to help figure out what to do, and she told us we could find a list of experts on the website of the National Highway Traffic Safety Administration. I searched by entering my zip code, and noticed that one name on the list was our county health department, which I figured would know the best person in town.

When I called and said I needed someone to help me with a mighty car-seat challenge, they immediately gave me the name of someone who does training sessions on fitting SN kids into car seats. I dialed him up and he turned out to be a police officer. It was 5 p.m. "I'll be at your house by 6," he said. And he was. Wow!

Even he had trouble. He said Quinn would definitely fit in a SN car seat, but said that one for a child his size would cost thousands of dollars. There are rental seats available locally for smaller kids, but not for kids his size. Yikes.

After much tinkering, adjusting and thinking, Officer Reeve figured out how to make it work. It takes some doing to get him into the seat arm first - good exercise for MaMa! - but he fits in snugly, safely and comfortably. We are SO grateful!

Tuesday, May 25, 2010

Home again

Quinn did astonishingly well on the plane trip home. That was the part of this whole ordeal I was most dreading, and it really was no big deal.

To be honest, I think codeine may have been a factor. At my mom's wise suggestion, we gave him a dose of his pain meds shortly before each flight. The first takeoff was really tough - he could not get comfortable in the seat and was squirming, pulling off his seat belt and crying pretty hard. After takeoff I managed to get him to lay down with his feet in my lap and he went almost immediately to sleep. Miraculously, he stayed that way for the entire four-hour flight. I even got to read a book and drink a hot tea.

In Dallas he had a nice dinner of his beloved vegetable lo mein, and on the flight home he laid with his head in my lap and watched Baby Beethoven (known to Quinn as "teh bear vi" after the violin-playing teddy bear that makes a couple of appearances near the beginning of the video.

He's pooped and we're pooped, but we're all glad to be home.

Sunday, May 23, 2010

Already walking!

Amazingly, Quinn is walking on his own. None of us can figure out how he's doing it, but he's doing it. He gets tired really fast, not surprisingly, and wants to be carried, which is a mighty challenge.

He falls quite a bit, which is scary - tonight in the room he went straight backwards and bonked his head on the floor. Ouch. It's also very difficult for him to sit up straight because his cast goes down to his hips. That makes high chairs, booster seats, regular chairs and sofas all very tricky.

We're a bit nervous about the plane ride home tomorrow. But if the past few days are any indication, he'll find a way to get through it.


Quinn is a train fanatic, and loves nothing more than going to the small train station near the hospital and watching the choo-choo's come and go.

Today we went for an actual ride on a train, to Faneuil Hall. He LOVED it.

Share my pain

This is the Wiggles song and video Quinn requested at least 100 times, all night long, in the hospital. Every time they woke him up for some procedure or another, he'd point at the TV and ask, "More more quack quack?"

I was horrified the next morning to learn Quinn's roommate Zack and his dad heard it every single time - I thought hospital speakers could only be heard from one bed at a time. I guess not...

I challenge you: Watch it and see if you can get it out of your head!

Saturday, May 22, 2010

Out of the hospital

Quinn has been discharged and we're back at the Yawkey Family House. We were told he'd be weepy and cranky for 2-3 days, and then realize the cast isn't going away and start to adapt to it. Instead, he started trying to walk while still in the hospital, which is extremely difficult because the cast is very heavy - I'd estimate about 10 pounds - and holds his right arm straight up and straight out. He's both top heavy and side heavy.

In the hospital he had a really tough time putting one foot in front of the other and couldn't hold up his upper body at all. Back here, though, he is doing much better. He immediately wanted to go to the awesome play room ("Play toys? Play toys?"). And there he moved from his stroller to a chair, with assistance. After a while he wanted an "eh-bayter" ride so Tom helped him down the hall by duck-waddling behind him with his arms around Quinn's waist and cast. By the time they emerged Quinn was walking with Tom holding his hand. He's not walking unassisted yet, but I don't think it will be long. He can even sit in a restaurant high chair and eat with us, which is terrific.

We had been told to bring button-down shirts two sizes two big to fit over the cast, but they're WAY too small. Turns out that when Dr. Waters got a view of Quinn in action pre-surgery, he decided a little redesign was in order. He built a double-thick cast and attached not one but two bars to hold Quinn's arm up in the right-turn position. The thing is HUGE. Quinn wears a 3T and we brought size 5s. Nana and I went to The Gap today and picked up four size 8s at a great price - buy one, get the second for $5. So Q now has a styling summer wardrobe.

I wonder how much of Quinn's amazing adaptability is due to his personality and how much is due to his special need and his time in the orphanage. In China, he learned to make due with what he was given. and because of his bracial plexus injury, sustained at birth, he invented ways to compensate for an only partially useful right arm. I know all kids are highly adaptable, but this kid is pretty remarkable. I am in awe of him.

Friday, May 21, 2010

Bad night, better day (updated with photos)

Quinn had a tough night. He repeatedly stopped breathing when he cried ("I will hold my breath until this cast is OFF!") and then the heart monitor indicated an irregularity. That meant an EKG - challenging with only a small chest hole for monitoring stickers. Then blood work - even more challenging because of his very deep veins. It took two teams of nurses and two needle sticks to get it right. So neither of us got much sleep.

The only thing that kept Quinn calm was back to back to back playing of the very annoying, "Quack, quack, quack, quack, quack, cock-a-doodle-doo" by The Wiggles. Quinn found it at the beginning of a fairly ancient Barney VHS tape from the hospital library and it was love at first listen. So listen we did, and did, and did, and did.

Today things are a little better. A cardiologist said Quinn likely has a very common early heartbeat in the upper chamber that 9 out of 10 kids grow out of. He's being fitted with a monitor today and will wear it for the next 24 hours. We also had visits from a car seat specialist, and a physical therapist who helped us figure out how to lift Quinn and get him in and out of his stroller. A cast tech cut some off the bottom of his cast because he couldn't sit up straight, and cut some out of the arm pit because it was sticking into him. And that was all before lunch!

We went down to the cafeteria for lunch and Quinn watched the giant ball maze for a long time, and the fish tank for a long time, both of which he loves.

After lunch he played in the activity room with BaBa and NaNa while I filled prescriptions, got travel letters, got release instructions and filled out release paperwork.

He's back to saying he wants to go on a train ride and directing which Barney songs he wants to hear, so he's definitely getting back to normal.

Thursday, May 20, 2010

Out of surgery and mad as hell (updated with photos)

Quinn's surgery wasn't until 2:45 p.m., which really worried us because this kid does not like to skip meals. Our strategy was to keep him busy, busy, busy and filled up with apple juice, which was allowed until two hours before surgery.

At 12:30, a bit nervous, we left the Yawkey Family House Here it is - a former frat house that was completely renovated and reopened about 9 months ago in its current form.)

At the hospital, he walked happily into the OR. He had a great time operating the mechanical bed with directions from the awesomely cool anesthesiologist, and played a fun game blowing into a mask, which he didn't realize was the fumes that would knock him out. The nurses were very patient and took their time with him, but when he tried to convince them to put the mask on his toe ("On toe! On toe!"), the anesthesiologist popped the mask on his mouth and off to dreamland he went.

While he was in surgery, we waited in this very nice family area. The surgery lasted 1 hour and 15 minutes, followed by an hour to put on the cast and an hour in the recovery room before we were ushered in. The poor kid woke up immobile, with his arm in a horribly awkward position.

Understandably, he is MAD! Between tears and begging to put his arm down, he did ask for some apple juice (his new passion, discovered this morning when he was on a clear-liquids diet until our noon arrival at the hospital).

He is doing well, all things considered. A nurse was able to scare up a master key to the locked video room, so Barney is making things better, as Barney always does for Quinn. After two doses of morphine, he is finally sleeping and I'm in the fold-out bed beside him.

Dr. Waters said kids who wake up with a "spike" cast are typically mad, mad, mad for a day or two and then adjust quite well once they realize it's not going away. Let's hope that's the case for Quinn!

Wednesday, May 19, 2010

Surgery tomorrow (updated with pictures)

We've made it to Boston for Quinn's long-awaited shoulder surgery. The trip went well despite my fears, and Quinn loved pulling his new big-boy back pack.

This morning, thought, he woke up at 4:30 a.m. and refused to go back to sleep. We were even treated to a very nice call from the front desk telling us other guests were complaining about the racket.

Today was pre-op madness. We visited the orthopedic clinic and pre-op clinics. Jess, Dr. Waters' nurse practitioner, explained the procedure and how everything will happen.

She also showed us, and Quinn, a doll wearing the cast Quinn will get. Yikes, it's much worse than I had pictured. Full upper body, and it can't get wet. That's going to be a challenge. He's an active sweaty boy who gets hot on the coolest of days.

In pre-op, Quinn was examined to make sure he was healthy for surgery. Then we met with the anesthesiologist and went through the hospital admissions process.

His favorite part of the day was watching the ball maze in the lobby, which he just can't get enough of.

He had so many appointments, and no nap, that he was just pooped. He slept right through his last two appointments.

Tonight we enjoyed a great dinner with other families staying here at the fabulous Yawkey Family Inn, which is affiliated with Boston Children's. Volunteers come and cook several nights a week, which is so nice. It's great to meet with other families, and we even met a little girl who got double arm casts off today, and got some survival tips from her mom. It's a beautiful old house that's all updated and gorgeous - and rooms cost $30 a night. Amazing.

Surgery tomorrow, so early bath and bed tonight. Please send your prayers, thoughts or good vibes at 2:15 p.m. eastern on May 20 - that's when Quinn's surgery begins.

Friday, May 14, 2010

Winning by failing

Quinn's tests for public special-ed preschool were a classic example of trying to fit a square peg into a round hole.

The way these tests work, if a child fails three consecutive challenges in a given area, that test is over. Quinn typically hit that threshold very early, indicating very serious delays. He is missing many of the basic, basic building blocks - not surprising for a child who spent his first 16 months in an orphanage with little stimulation. BUT, if you skip over the baby stuff, Quinn has many skills of a child his age or older. He knows his letters and numbers, can figure out how most anything works, knows which key goes into which lock and has memorized countless books and songs.

So how to score him? If the test results take into account his more advanced skills, he would not qualify. If they focus on his lack of basic skills, he would certainly qualify.

His therapists all agree that he will benefit from this program, and want him in it. So after much discussion we decided to follow the rules to the letter: When he failed three consecutive challenges, test over. They all agree this is fully ethical, and best for Quinn.

So that's what we did. And he qualified. He will attend preschool for two hours four days a week, and will get 30 minutes of speech therapy every week and 30 minutes of occupational therapy every other week.

We visited his assigned school yesterday, still unsure if this is the route we wanted to go. We were convinced in about two seconds. The atmosphere was fabulous. We arrived during "free choice" time. A little girl in a smock was painting a picture. An occupational therapist was playing a game with a few kids. The teacher was filling the kids' backpacks with goodies while chatting with each one. One aide was helping kids build a tower while another aide played "snack time," helping kids cut and serve a plastic pizza cooked in a toy microwave. Quinn headed straight for the train table and stayed there - sometimes playing on his own, sometimes with other kids - until it was time for clean up and circle time. He knew just what to do when the Barney "clean up" song came on - and when it was over he headed over the CD player and started it up again (Mrs. Schreiber is going to have to move that CD player!). Much to our amazement, he plopped down in a chair for circle time and participated in the song and hand movements.

We are SO excited about this school and the opportunities it holds for Quinn. Aug. 23 can't come soon enough!

Impish cuteness

Grandma Day

This is how Quinn and Nana spend their Mondays. Quinn tells Nana what to do, and Nana does it. Is that a perfect way for a toddler to spend a day, or what?

Mother's Day

We had a really wonderful Mother's Day despite that fact that I have pneumonia! We started the day with a spectacular brunch with my parents, brothers and sister-in-law at a spectacular resort. Everyone else paid $52 per person (!!) but we ate for free because Tom wisely shot an ad for them last year and took trade-out instead of money. Smart man.

Quinn loves to do "cheers," so we started brunch with a mimosa toast. This was Quinn's first taste of orange juice, and he loved it!

After brunch Quinn took a long nap and MaMa read a book (ahhhhhh). Then we played in the back yard and BaBa pulled out the professional camera.

This shot is my favorite Mother's Day present. Love it, love it, love it.

We ended the day with what has become my Mother's Day tradition: a mound of fried food from my favorite local greasy-spoon, followed by a big slice of lemon diner cake. Yum! From start to finish, it was a pretty perfect day.