Thursday, October 22, 2009

We Need House

No, not a home...we have one of those. We need House, M.D., to help all the pediatricians, lab folks, and surgeons figure out what is wrong with my son. Because no one, and I mean no one, knows what is going on in his tiny little body.

So, about five months ago I wrote a post about my son's refusal to grow. Well, guess what? Over a year after his second surgery, he is the in the second percentile...still the exact same size as he was at 10 months of age. The good news is that it means he doesn't have to have anymore surgery for a while, because his brain isn't outgrowing his skull. This was confirmed with a check of his optical nerve, and there's no pressure, so he doesn't need to come back and see the surgeons for a whole year (barring any big changes or a problem at his eye check-up in 6 months).

The bad news is he isn't growing, period, and no one knows why.

He's been tested for CF, and when I go to his appointment on Tuesday with his new ped group, we'll have to get a referral to a pediatric endocrinologist to check his pituitary and thyroid, I suppose, but I'm just afraid he'll stay this way forever (and don't tell me that doesn't happen, because it does). I'm just afraid he'll stay this size or at this developmental level, or both, and that isn't the life I want for my son.

More appointments this coming week (regular pediatrics and another OT appointment), and hopefully we'll find a good endocrinologist for him. :/ Keep the little guy in your thoughts and prayers, please.

Little Monkey's diagnosis

Remember Little Monkey? The sweet little angel baby with the skull problem who, 30 months ago we thought was going to be the big medical challenge for our family? He's almost 2 now, and still a sweet little love.

His beautiful wispy curls hide the scar very well, and he's fiercely happy, which is great. He climbs well, can carry a ball upstairs (in order to throw it down, chase it, and bring it back up) and signs for "milk," "more" and "food." I couldn't have asked for a more easy-going and laid-back kid.

Which, it turns out, is sort of a problem. On Tuesday, he and I trekked out to SW Portland for his evaluation by an occupational therapist. I know you're all wondering what could possibly be wrong with him, right?

Well, to start out, he doesn't talk, not really. When we first moved to Portland, he had NO words, no signs, and could communicate at all. Now he has "che-che" (leche, or "milk" in Spanish), "up!" and "Papa!" that actually mean something. He parrots a little now, too, which is awesome (before he would just sit in contented silence). Still, at 23 months of age, he's speech delayed.

We're still trying to schedule an evaluation with a speech pathologist, but the OT planned to check on the speech thing.

He's also not eating, like at all. He still guzzles Pedia-sure like he's afraid we're going to run out of it. For days at a time he'll refuse any solids, and then he'll be willing to eat some banana or bread (crackers, bread, chex, cheerios). However, he doesn't chew, he only sucks, so if he gets too much in his mouth at once, he gags and either throws up or aspirates. Apparently, he doesn't chew because his jaw-muscles aren't strong enough. He can bite you, and hard, but prolonged chewing is hard, and hurts, so he doesn't do it. This may have something to do with his lack of speech as well, I'd guess. We were given a little tube-toy to try and teach him to chew, and encouraged to work on it with him, since the very concept seems to elude him.

Then, as the lady was looking through her list, she realized that he has a few indicators of an autism spectrum disorder (mainly his fascination with ceiling fans/wheels and his silence). The boy does LOVE things that spin, and he is super quiet, so I had known they would be looking for this. Still, when the therapist was showing him one of those hit-the-ball-with-a-hammer toys, he copied her on the first try and then looked up at her to make sure he'd done it right, inquisition all over his face.

"Well, he's NOT autistic," she exclaimed, laughing. "Good," I thought. "So what is he?"

Turns out, the answer is "complacent." I mean, he is delayed, but that's sort of expected after his surgeries, but he should be catching up. The reason he isn't? It's hard, requires a lot of effort, and he's quite happy how he is, thank you very much. "Do you know any second-born boys?" she asked me, and I laughed, thinking of Needlenoggin and Tuffy. "Do you see a difference between them and their older siblings, especially sisters?" Again, I laughed. Tuffy's sister is very driven and accomplished, with a doctorate degree and she's going to law school. While not quite as impressive, *I* am Needlenoggin's sister, and have 2 kids, work, write, do art, am a wife and a full-time grad student. I went to Berkeley.

"Yeah, us older girls are a bit more driven," I admitted. She went on to explain that he chooses the path of least resistance (like spinning toys or bouncing a ball) because he can't make a mistake with them, and they make him happy. Stacking, drawing, whatever else, all take more effort, and he can fail at them, so he chooses things he's comfortable with instead.

"He'll work if there's something he really wants" she went on, which explains how and why he gets all worked up when I won't let him open or shut a door he wants to play with, but he works for happiness; either for him or for Tuffy and I. He'll do his "besos" trick (kissing us) because we laugh and squeal and smile and say "good job", and if we're happy, he's happy. So, we have to make sure he knows how happy we are when he stacks blocks, learns a new word or sign, or does something he's not comfortable with.

After discussing how well this complacency was going to work in school and being told he'll probably need external reinforcement, like praise and perks when he does well to motivate him, the OT said something really important:

"Crazy driven people, as adults, contribute a lot to society...medicine, law, what have you. In order to live whole and complete lives, to be truly fulfilled and happy, they need to LEARN to relax, and let go of perfectionism. Easygoing people on the other hand, are happier, but can end up lazy if they don't learn to work. Your son NEEDS to learn to chew, eat, talk, etc, but he'll do it if it makes him happy, or you or your husband or your daughter happy. So make it a game, and show him that doing these things makes life better for him."

I liked that, and we scheduled my boy for every week for the next couple months. He'll be going in for a speech eval as well, probably in November, and then we came home and packed up for his neurosurgical/plastic surgery/eye appointment on Thursday.

Sitting at the dinner table, I was telling Tuffy all about the chewing games we're supposed to work on, and how worried I am. He reached into a box of crackers, stuck one half of a Wheat Thin into Little Monkey's mouth, and chucked him under the chin. "Bite," he said as the cracker snapped in half. A few more times, and my son will now bite crackers in half. In two hours, Tuffy taught him what biting was, if not that he should actually chew his food! Progress, right?

Thursday, October 15, 2009

Rorysaurus Update

So, we moved. And Tuffy isn't here except on some (most) weekends because his job is in CA. And Needlenoggin has moved into his home. And Rorysaurus has started at a new (very good) school:

I sort of expected this to be a transition for her, but not an especially bad one. I mean, she's made friends with the neighbor kids (riding her bike with one and inviting two others over to play in the backyard on the swingset I built her). She loves her new school, with the exception of an awful little bully girl who intentionally excludes her from things. She even has a little girl with the same first name in her class. This was all good, I thought, and knew she'd settle in eventually.

Well, as always, my version of "eventually" didn't take into account the way her world went, and her PTSD. Poor baby has reverted to peeing in her bed every night, had a couple of accidents at school, and is generally a lot more panicky and clingy than she has been the last few months. This is also the first year she's been really exposed to Halloween, and she's been WAY too interested in the blood/skeletons/scary green women making bone soup.

She's been telling us that if you fall "too far" you explode (to be fair, her uncle did kind of explode on her), and crying a lot, which panics me, which causes her more anxiety...still I was hoping we could deal with the cycle on our own.

However, I realized that we were really going to need to go back into the whole therapy thing with her at a store the other day. We were ealing through the costume aisle, looking for red face make-up for Tuffy (he and Jules are going as devils, while Rorysaurus and I are going as angels. Yes, we do find this funny). Anyway, she found a plastic sword and picked it up to explain to me how she, as "girl-Batman/Spiderman" was going to fight "bad guys." Well, this sword had a red-pseudo-blood-liquid in it, so when she moved it, the "blood" splashed around inside the clear plastic of the sword.

I hate being the parent with the screaming child in a store. And here she is, acting like she's having a Vietnam flashback, just screaming and screaming about the blood and the owies. I tried to explain to her that it was fake, but she is a very literal little girl, so that didn't take. Then, she paused, looking at the costume rack, and got very, very quiet.

I looked to see what had caught her attention. Right in front of her was one of those "knife-through-the-head" gags:

and next to it was a child's doctor costume:

"Crap," I thought. "This is NOT going to go well."

" that a doctor like my doctor or is that like Little Monkey's head doctor?"

I confirmed that it was, indeed, a surgeon, and waited. She looked down at the sword, and back at the gruesome prop. "Ohhh," she started, "this is a doctor sword."


"And this person here," she said, pointing to the kid with a knife in his head, "is going to go as Little Monkey for Halloween." Sometimes, her connections do not make any sense, and sometimes, I never even know what she's thinking, but for her to think that this bloody sword and this impaled child were what was done to her brother gave me chills. I must have looked horrified, because she patted my arm and told me that the surgeon only cut the boy's head so he'd get better, and besides, it was pretend.

Smiling, I started to move us to a less terrifying aisle. She didn't want to give the sword up. "Can I have the doctor sword, Mama?" she begged. I told her no, and bought her some piece of cheap, plastic, princess Aurora crap instead. Seriously, whose kid does this stuff?

Reluctantly, I dragged her into a new doctors' office in a neighboring city to meet an NP and get a referral to therapy. I want her to be alright, and part of me wants to deny that she has any problems and thinks if we do just ignore it, the whole mess will go away. I know that it won't, though, so we're heading back to therapy.

On the other hand, I do get some really fun moments with how aware she is. When her Pre-K class all colored a little skeleton to bring home, hers was the only red one. I asked why it wasn't pink, like EVERYTHING ELSE she brings home. "Because bones are inside you, with your blood," she explained, as if I were the child. Fair enough. She was also at school when some little boy fell off a swing and started to cry. She ran over to him, looked him in the eyes after helping him to his feet and asked, "is there blood?" When he said no, her response was, "Oh. Well, then, man up." ::Sigh:: She's fun, sometimes.

Tuesday, October 6, 2009

The BORP ride

Let me first say that what BORP does is amazing. I mean, really and truly, it is a fantastic organization that gives so much to so many people. Giving people with disabilites the chance to participate in sports like goalball, powersoccer and wheelchair basketball is so tremendous, and their cycling program is the best I've ever seen.

That said, one of their fundraisers every year is the Revolution. It is a few bike rides, from 10 miles to 100 miles, as well as an auction and a festival, that raises funds for BORP's program. There are volunteers who ride at the front of tandem bikes so that blind riders and do the ride. People ride handcycles, tricycles, and other adaptive bikes, so that people of all ability levels can participate, from all age groups. Just thinking about the people we saw at the Revolution makes my heart swell, as so many of them face much greater obstacles than you or I, and they were still out there raising money for such a great cause.

Of course, you know Needlenoggin, Tuffy and I signed up for this a few months ago. The plan had been for Tuffy, the kids and I to do the 25 miler, and for Needlenoggin and Miss Manhattan to do the 10 miler. However, the move to Oregon sort of changed out plans, and since Miss Manhattan was feeling ill, we decided to do the 10 miler with Needle ourselves. My mom wached the kids at our home in Portland. We flew down the night before, rested as well as we could, and then trekked up to Napa to ready for the ride.

We got all suited up and ready to go, and then the ride began. Now, please remember, as you read this, that ONE year ago, almost to the date, Needlenoggin came home in a power wheelchair. He had a chest stap to keep him from falling out of the chair because his abdominal muscles wouldn't hold him up. He couldn't get in and out of bed by himself, shower, use the bathroom, and he was 290lbs. His lower body only felt one sensation...neuropathic pain, and his spasms were so bad that they could, and did, throw him out of his bed to the floor.

Helmet on, feet strapped into the pedals of a borrowed adaptive Sun Tricycle, Needlenoggin paused for just a moment at the starting line, and then pushed his left leg with all of his might. The bike moved forward. His right leg hasn't quite got to where it moves in any kind of automatic function, so the pedal moved it around as his left leg pumped. Down the bike trail we rode, talking about the trees and the plans for the evening, and petty soon, his right leg was into the ride as well, pushing and pulling for all it was worth. Up a hill, up another. "Well, at least the first half is uphill," I said. "That'll make the ride back easy."

Around the next corner, we came to a downslope, onto a street with cars. Needle didn't pause. Down he went, flying past other riders, and clearly enjoying himself. We turned onto the next bike path entrance, and I panicked. There was a lovely, meandering stream, all green moss and clear water, and across it, about 5 feet over the riverbed, was a wooden bridge, about 10 feet long. Needle has adamantly refused to traverse any wooden structure since the accident, something that has made a few doctors hard to see, and the back decks of his new home a challenge.

He went right over it, talking the whole while. He did the same with the next three bridges, one easily 100 feet long, that rattled in a slightly unsettling manner. Even when we came to a not-well-marked section of the trail and got a little lost, he helped us find the path and zoomed down the trail (cutting a few people off as he went, of course). Down, down, down.

We hit the turnaround point, and Tuffy and I checked to make sure we'd brought the necessary equipment to help haul Needlenoggin back up the 5 mile hill. We rested at the bottom, drank some water, and then we went back. Up, up, we climbed. Slower than the woman power-walking up the hill, we pedaled. Needle, too. The woman was giving exasperated glances at the disabled riders coming up and down the hill, and Needle nuttered under his breath "You think you're better than me because you can walk?" and redoubled his efforts. We passed her on a straight way, and he got very smug.

A mile further, and the trikes right back wheel hit a ditch, dumping Needle off the side of the road. Tuffy and I pushed the trike back onto the asphalt, and away he went. That was the only physical assistance we gave him.

As we got to the home stretch, Needle started sweating, and pushing himself as hard as he could. I tried to come up on the side of him, and he'd cut to the middle of the road, keeping me behind him. I realized we were racing when he laughed across one of those wooden bridges. Tuffy caught up, and we crossed the finish line a few feet behind one another, Needlenoggin first.

In just over an hour, my 240lb paralyzed brother, who was supposed to be on a respirator and checking for bedsores on his totally useless legs, had biked 10 miles. I was thrilled.

He was exhausted.

We took pictures and headed him, but not before handing over the big check to BORP. With everyone's help, Needlenoggin raised $7250 AND was able to buy an adaptive trike of his very own. Last week, in Portland, he harnessed up Dingo and took her for a run, all by himself. Such things were supposed to be impossible, absolutely out of reach, but he's had a miraculous recovery, and as a family, I think we've done alright together.

Now, look, Needle isn't perfect. In some ways, he's a young, teenage kid again, and that can sometimes make him thoughtless and irresponsible. When Tuffy's back tire went flat, Needle pushed on, not even thinking about waiting for Tuffy, who was prepared to drag him up the whole 5 mile hill. This has been very hard for my husband, who has given so much of his time, effort and sleep over to Needle's care, and who feels like there isn't a real connection between them. Needle's behavior isn't meant as an insult, he just doesn't think, and I think the mental issues due to hitting his head as hard as he did are really going to be his biggest challenge. Still, it was hard for Tuffy, who felt sort of left out the entire ride.

As of mid-September, Needlenoggin no longer lives with us, though he is close by. He has two part-time attendants and lives on his own with Dingo, and comes to visit us weekly. He even climbs the front steps and up into the play room to watch TV with the kids. We've found him a doctor at Oregon Health Sciences University. His next appointment, where he'll get all of his neuro/physical therapy/whatever appointments is on 10/28. He has no health insurance, but that's what the settlement was for, and he's stable on his medications.

Thank you to everyone.