Wednesday, June 24, 2009

The dreaded W sit

Until Drake started seeing his physical therapists, I hadn't spent much time thinking about sitting. I surely didn't know the names of all the different ways to sit: the prop sit, the ring sit, the side sit, the (dreaded) W sit, the short sit, the long sit. I didn't know that sitting was such an important indicator of future mobility. I didn't know getting in and out of sitting is one of the most difficult transitions for people with CP.

Drake has been sitting for a few months. But he's been mostly prop sitting (using his arms to support himself) in ring, side or W sitting. He can get out of any kind of sitting, but he can only get into propped W sitting. When he wants to sit, he rolls to his stomach, pushes up to all fours, and then sits back on his haunches. This works well with his crawling, too, as when he wants to crawl, he just shifts his weight forward and takes off. When he wants to rest, he sits back on his haunches again.

We have loved all this progress with sitting, but it's not that fun for Drake, as he can't use his hands to play in this position. He can shift his weight to one arm or the other, so he can use one hand to grab a toy or open and close a drawer (new favorite pastime). But things that need two hands to hold, like a book or a bottle or something he wants to manipulate, just doesn't work in propped sitting. He tends to roll onto his back to play with things that require two hands.

All his therapists keep telling us to not let him W sit. When we see him do it, we are supposed to swipe a leg underneath for side sit. Or even better, transition him to ring sitting.

But recently, he is starting to lift up both arms in W sitting and sit there without any arm support. And even more recently, bring a toy up with him and play with it... with two hands...sitting straight up! But it's the dreaded W sit! And when I take him out of it, he loses his balance and can't play with his two-handed toy anymore.

I feel like such a bummer parent. He is so excited to have his new skill and is trying to do it a lot. And here I come, and knock him down. I keep thinking that getting the balance and trunk strength to sit unsupported in W sitting must help sitting unsupported in other positions down the road. Is it true that once they learn to W sit they won't sit in any other positions? That is how his therapists have painted it to me. But I could see letting him get really solid in this position, then helping him learn to sit unsupported in other positions, too.

Monday, June 15, 2009

Sailor boy

Just a cute picture of Drake dressed in a sailor suit that was first worn by my maternal grandfather in 1914.

Thursday, June 4, 2009

Save state services!

Like most states, California is in a huge budget crisis. Governor Schwarzenegger has recently proposed cutting Early Start and other in-home services for developmentally disabled children by half a billion dollars! I don't usually get all riled up and political, but in this case I am. I just emailed all the assembly people in the state I could find email addresses for the letter below. If you live in California, please consider doing the same. Make your voice heard and save Early Start!

Dear Assembly Member,

I am writing to ask you to please fight for our state's Early Start program. We live in Oakland, CA and our 19-month old son, Drake, has Cerebral Palsy.

He has been receiving in-home services through RCEB since he was 3 months old. He gets physical therapy and speech therapy once per week. We feel these services have made a huge difference in his short life. At 17 months, he started crawling. His doctors didn't believe he would crawl until well after his second birthday, if at all. He also now says the words "Hi", "Bye" and "apple" and has learned to sign the words "eat","more" and "drink". His speech therapist taught him these signs.

Having to work full-time to support our family, having these services in-home makes all the difference. I don't know that Drake would be able to receive these services if my husband or I had to bring him to and from each appointment. Plus, the home is such a comfortable, familiar environment for Drake -- it's where babies are meant to be!

Drake loves his therapists, too. They have become like family to our family. Please don't take away his services or the positive people in his life. Fight to keep Early Start and in-home services for developmentally disabled children! It's really important to have these services available to children before age 3. Their brains are still plastic and can re-map motor pathways that have been damaged.

Thanks for listening and considering our plea.

Tuesday, June 2, 2009

House of puke and poop

It has been stomach bug HELL here. I feel like I have been through war and now have PTSD. Both kids had sudden-onset vomiting within 3 hours of each other last Thursday. Sudden, violent vomiting, that once the stomach was empty, turned to vomiting saliva, then bile and finally dry heaving. This vomiting episode lasted about 6 hours, at which point the kids passed out and slept through the night. Friday morning, they were pale and weak and would puke up every drop of Pedialyte we offered. By noon Friday, Drake had diarrhea. Lucy was lethargic and refusing to eat or drink anything. I had to use a medicine dropper to get her to take any fluids. Saturday morning, my husband came down with the bug and was completely out of commission. Drake was pooping wet diapers about every 30 minutes. Lucy was lying on the floor, floppy and mellow. Drake wanted to eat, but would puke up most everything he ate (though he was holding down fluids). By Saturday night, Lucy was so lethargic and cold, I took her to the ER for IV fluids. They promised it would perk her up and help her re-gain her appetite. It took 3 pokes to get the IV in. She screamed. The toddler sharing the room with us was vomiting onto the floor every 20 minutes. Finally finish the IV and are discharged, and as we pull into the driveway at home, she pukes all over the car. Sunday, she is even more lethargic than Saturday. She has probably only eaten half a banana and a few saltine crackers in 3 days. Drake seems better, holding down some food and drinking well, so I give him a milk bottle before bed. Go in to check on him a couple hours later and he's covered in puke. Monday morning, get Lucy up and she's covered in poop. Take both kids to the pediatrician where he weighs them and we find they've both lost about 1.5 lbs. Drake ribs are showing. Lucy had finally gotten to 19 lbs, now she's back to under 18. He tells me to keep pushing flat 7-up, saltines, chicken stock. No dairy! Monday day, Lucy seemed better. She perked up, was playing, wanted to eat and drink. I was thrilled. Got home from work to the report that no one puked or had wet poops all day! Today, she is lethargic again, though she did drink some soy milk and eat some plain noodles. Drake seems almost 90% well. He drank two 6 oz soy milk bottles and had crackers, waffle, banana, 7-up, Pedialyte. I got bold and put sheets back on his bed (I had them sleeping on the bare mattress since they puked and pooped so much it was silly to use sheets). Tonight, Lucy perked up a bit when my hubby got home. Please let her be herself tomorrow. It's been a long few days, people. No one tells you what it's like when your kids get sick and you can't get them to eat or drink. Especially two at the same time. And don't forget the husband. No lie, I probably got puked on 25 times a day and changed just as many diarrhea diapers. Amazed I am still standing, actually.