Holiday pics!

Hope everyone has a happy holiday. We are driving to Los Angeles tomorrow. I am happy not to be flying anywhere given the nasty weather all across the country.

This picture below is an out-take from our holiday card photo shoot. Only in California do you get green grass in the middle of winter! I was trying to make it look festive with the red chair.



Drake was doing wonderful kneeling. He held on to the chair like that for a while. And he was trading arms back and forth so the other could do some banging on the seat.

Love this one of him, too...



And finally, here is the one we went with (I had to photoshop out my cousin's kid running behind the chair)!

Workin' it

I have been looking for a job since November, and just got offered a contracting gig. I've been there a week now. It's been so bittersweet for me to work again. I miss the twins terribly. But, I am having fun being out of the house, working with smart people and using my brain!

What has been crazy though, is how much change I notice with the twins now that I don't see them all day, every day. Last night I was feeding Drake his bedtime bottle and he reached up with both hands and grabbed the bottle right out of my hands! Then he put it back in his mouth, pulled it out again, put it back in. In between each of these acts he was laughing with pride. He was so excited to realize he has control over his bottle. I told my sister what he did and she was like "Oh, yeah. He's been doing that." It was like a dagger in my heart that I didn't know this was something "he'd been doing".

Lucy, too, is taking me by surprise. I came home the other day and I swear she said "Hi" when I walked in. Again, I told my sister what she did. "Yeah", she replied. "She's been doing that." Her first real word and I missed it?!

I am trying not to focus on what I am missing by being at work, but what I am gaining when I come home and feel completely awed by my amazing children.

Cheap trick

I swore I wouldn't let the twins watch TV until they were at least 2 years old. But the other day I was at a friend's house who has a 3 year-old and she put in one of his old Baby Einstein videos for the twins to watch so we could chat. I begrudgingly let her; I, too, wanted to chat as I hadn't seen her for a while.

Needless to say, the twins were transfixed. What is the secret ingredient to these videos that makes babies go deer-in-headlights for 30 minutes straight? I wish I knew, I would be rich!

Anyway, what struck me was how well Drake sat while watching the video. He sat there, steady as a post, in his prop sitting position, head up, for at least 20 minutes!

His therapists and I have been brainstorming ways to strengthen his upper back and the back of his neck and to get him to bear more weight on his arms. We have decided prop/side sitting is the best bet, as he hates tummy time now that he can roll right out of it. He is great at prop/side sitting, but he tires or gets bored and lets his head hang and then his arms collapse and he lies on the floor in some kind of yoga pose I could never attempt.

So, today I was at Babies R Us and I saw some Baby Einstein videos. I couldn't help myself. I bought one. I put it on when I got home, got Drake into a HANDS and KNEES position (we've been working on this advanced move), turned on the video, and voila, he held that stationary crawling position for like 5 minutes! With his head up to see the TV! When he tired of that, I put him in prop sitting and he watched the rest of the video -- for like 20 more minutes!

I think I'll be buying a few more of these videos.

Feeding frenzy

Drake is getting much better with finger foods. He pretty much feeds himself all his meals now (except for yogurt and applesauce and things that need to be spooned) and can pick up banana and slippery things as well as Pirate's Booty which is featured in this video. He almost always uses his left hand, and though the control isn't perfect and he sometimes "blindly feels" for the food, as documented here, he gets the job done. Very proud of my little dude.

The hardest question

My husband and I are going to a wedding in Colorado in two weeks. It will be the first time we have both been away from the twins overnight. And not just one night, two nights! And it's the first time we will have flown somewhere without them. Of course, that gets me thinking about the question you never want to ask "Who would I leave my kids to if something happened to us"?

When I was pregnant, we talked about it a little. We settled on asking my brother, who is 28, recently married, and has no kids of his own. We thought they'd be the best choice, as they are true soul mates, there is no divorce in their future. They are also kind, compassionate people who value the same things my husband and I value.

We decided we don't want to leave our kids to either of our parents as we don't think it's fair to ask them to care for young children when they are finally retired and free to do the things they want, and we don't think it's fair for our children to grow up with older people who will ultimately need their care.

But then, when the twins were born and we found out about Drake and realized he will have lifelong challenges, everything kind of changed. I felt that we couldn't ask my brother anymore as it would be too much to ask him to care for a child with a disability. They want their own children some day, it's already a lot to ask them to take twins, let alone one who will need more care. I feel awful saying this, but I don't know who in my family would jump at the chance to have him. I am sure if I asked my brother and his wife, they would say "Yes". They are family people, they love us and the kids. And my brother's wife is in medical residency to be a pediatrician. Perfect for access to healthcare. But I can't bring myself to ask them. It's like I feel guilty asking them. That I would have somehow forced them into committing to it.

That leaves my sister, who lives with us, and is the twins' nanny three days a week. She loves them unconditionally. But she is 26, unmarried, trying to get into graduate school. It would be really hard for her to take on two little ones at this point in her life. I can't ask her. My husband has a brother. He is 29. And he lives with his girlfriend. But, they don't even want kids. Again, I am sure they'd say "Yes" if we asked them, too, but again, Drake complicates things.

Of course, our kids would come with money. They'd get all our savings, stock portfolio, estate, etc. But it's not going to be enough to pay for them until they are 18. And I don't know what it will cost to outfit Drake with things he may need.

I feel stuck and awful feeling like no one would want our beautiful kids. I guess nothing bad better happen to us.

The Brain That Changes Itself

My grandmother recently gave me the book The Brain That Changes Itself by Norman Doidge. It's about "neuroplasticity" and the idea that the brain changes and can be forced to changed if damaged or compromised in some way. I just started reading it and have only read 2 chapters -- one about a woman who had no sensory perception and was cured by stimulating the sensory receptors in her tongue and another other about a stroke victim who learned to walk and talk even after damaging a significant portion of his brain. So far, it's pretty fascinating -- and encouraging. I was telling one of Drake's therapists about the book today and she said that now neuroscientists use MRIs to watch in real-time how new areas of the brain can "take over" functions for damaged parts. It's so amazing what our bodies and brains are capable of. I feel like there is still so much to learn about the brain, too. And with stem cells, too. Anyway, the book got me kind of excited, so thought I'd pass the title on.

Night terror?

This morning Drake woke up at 1:30 am crying a cry we'd never heard before. It was one full of fear. It sounded more like a series of loud yells or screams, with inconsolable crying in between. Sometimes he wakes up in the middle of the night crying and it lasts a few minutes and he goes back to sleep. We don't even bother to check on him. But, last night my husband jumped out of bed to check on him, since the sound of the cry was so different. Andy said when he got to him, Drake's eyes were wide open and kind of wildly searching, and that it didn't seem he knew Andy was there. When Andy picked him up, he calmed a little, but would then kind of startle suddenly and the screams would start again.

Andy called me into the nursery a couple minutes later because he wanted me to see what was happening. When I took Drake, he was crying hard, but not doing the startle/scared cry thing anymore. After a couple more minutes he calmed down and was just kind of whimpering in my arms. Then he started smiling and cooing and being his usual adorable self. I put him back in his crib and he was quiet for a while, then cried here and there as he tried to fall back to sleep, but it was a normal cry and we let it go.

I was thinking this could have been a night terror? Has anyone experienced those and does this sound like that?

Home again, home again

We just got back from a week in Seattle. It was a great trip. We are truly blessed when it comes to having easy travelers. Both kids slept through both flights and adjusted to all the new places, routines and people with ease. I drove the kids to Portland on Tuesday for an overnight with my best friend. Her boyfriend babysat for the the twins while she and I went out on the town for a much needed, wine-saturated night.

We spent Thanksgiving with my husband's cousin and his family. It was really nice. I am still licking my chops thinking about this plum chutney they served alongside the more traditional cranberry sauce. So delicious. Andy's cousin had about 14 people over for dinner and none had ever met our family. I was sort of dreading the usual questions I get about the twins, like why are they such different sizes and why isn't Drake crawling like Lucy. And though the questions were asked and I smiled and gave my usual answers, no one batted an eye and we felt very welcomed and "normal" there. Everyone was so charmed by the twins, especially Drake who is such a people-person. Lucy could care less about people. She scans a room and wonders what kinds of things she can get into there.

Lucy did get sick our last day there and was running at 103 fever. And though I hated that she was sick, I loved that all she wanted to do was cuddle with me. It is so rare to get that little girl to snuggle. She slept on my chest for hours and I was pocketing every minute of it.

Meme

One of my favorite twins blogs (though she writes about lots of other stuff, too) is by Helen at Everyday Stranger. She just got tagged to do a meme and invited her readers to play along: Go to your 6th file of photos on your computer and select the 6th picture.

Here is mine:

This is a picture of me and my little brother, Billy, eating ice cream cones in Sausalito. It was taken 8 years ago, when he was visiting me on a college break. What strikes me about seeing this picture now is how much HADN'T happened yet. Oh, the innocence! The freedom! The ability to fit into clothes two sizes smaller than the ones I wear now!

I wasn't married (I had probably just started dating my husband), didn't have the twins, didn't have my house, my grandparents were still alive. I could never have imagined when this picture was taken the life I have now. And my brother was just a college kid then. He just got married in September, so a lot hadn't happened to him yet, too.

This was fun, thanks Helen!

Kissy, kissy

We've been doing 'kissing sounds' with the twins for a while. But just a few days ago, Drake started making them, out of the blue! Now, he will make the kissing sound on command or after he hears someone else do it. It's so great for a few reasons: first, it's cute as hell, secondly, it shows he's grasping mimicking, and thirdly, he's getting his lips together to make the sound. He hasn't made many sounds like "maaa" and "baaa" that need the lips to close. Mostly he makes open vowel sounds, 'g' sounds like "gaaa", "geee" and "gooo", and various shrieks and squeals.

Vaccinations

We brought the twins to their Well Baby visit today. They both got the MMR vaccine and, once their pediatrician heard we were flying on Monday, a flu shot, too. My husband and I have always been pro-immunization. We believe it's important to vaccinate our population to prevent the spread of disease. So, I haven't blinked an eye when the doctor orders up their boosters every few months. Today, however, I had the slightest anxiety with the MMR, since I have read it's the vaccine that's been linked to autism. Their doctor assured us that isn't the case, that the doctor who wrote the white paper on the link between the MMR and autism is being sued and the co-authors of that paper have disassociated from it. Also, that the the MMR vaccine doesn't contain mercury anymore, which was thought to be the culprit. So, we forged ahead. My sister-in-law will be especially proud. She is in medical school in Vermont, studying to be a pediatrician. She had told me that many people in Vermont have been freaked out about the MMR/autism link and haven't been giving that vaccination to their kids. Vermont had several cases of mumps this year. Crazy.

Lucy lives here too

A couple weeks ago we brought Lucy to the developmental pediatrician for her 12 month check-up. She aced all the games and tests and the doctor determined her right on track for a 12-month old. Yay, Lucy! The doctor asked how many words Lucy had. I said none. I mean, she says "mama" and "dada", but not with meaning. She calls my sister and anything she really wants, like my cell phone or camera "mama", too. The doctor told me Lucy should have 3-5 "words" by the time she's 15 months. She asked if we read books and worked on identifying animals and colors and body parts. Books, I thought? Who has time to read books? We have a million books for the kids. Their bookshelf is practically full. And we occasionally sit down to "read" them. But, it's not something I have (or, I should say, make) time to do.

I feel like I spend about 60% of my day attending to the twins' basic needs: diapering, feeding, dressing, napping, bathing, teeth brushing. The other 40% is for playtime and walks. But most playtime is spent with me doing exercises with Drake, like stretches or helping him sit or encouraging him to roll across the room. Lucy is often in the room with us, playing with toys, and I include her as best I can, singing songs and cuddling with her when she crawls into my lap. But the reality is she is getting the short end of the stick right now. I feel so guilty about it, but I don't know what to do. All of Drake's doctors and therapists stress to me how important it is to do as much therapy as I can with him during the first 3 years. My husband helps, and my sister, too, but I am with him the most and bring him to the majority of his appointments. So, right there he gets more 1:1 time with me, as I leave Lucy with my sister when I go to his 4-times-a-week appointments.

I am sure I will be grappling with this for years to come, and there will be times when Lucy is getting the most attention, but right now it feels hard to be a good parent to both twins, especially when they are at such different activity levels.

Learning to talk

Today I had lunch with a guy I used to work with. He's not a close friend, but he's more than just a colleague. We used to go for coffee almost every afternoon. He has young kids too and we'd talk about our families and bitch about office politics. And though he knew our twins were born prematurely and spent time in the NICU, I never told him about Drake's PVL diagnosis or his delays. At the time, Drake was just a few months old and we really had no idea how it would affect him. And I had found that when I did tell some close friends about it, though supportive, all they wanted to know was "How did it happen?" and "What does it mean?". I had no answers for either of these questions, so it was always an unsatisfying conversation.

Today at lunch, he asked about the twins. I told him they had recently turned one and were doing well. "Are they walking?", he asked. I told him Lucy was close to walking, pulling up on furniture and cruising along whatever she could reach. "But Drake has some delays due to being premature", I said. "He is just mastering sitting". He kind of nodded and I couldn't tell if it was because he didn't remember when babies are supposed to master skills or because he was looking for more information. So, I continued with the second stock phrase I use when feeling pressed to explain further. "He's in physical therapy", I said. "He goes a few times a week so that he can be caught up by the time he's three."

I know it's a lie. I know he won't be "caught up" by age three. But, saying this usually makes sense to people, explains all my appointments and is often the end of the subject. But today, I felt empowered to continue. I don't know why, maybe it was the beer I was drinking, maybe it was this new-found voice for talking about Drake (hence this blog). I said to my friend, "You know, if he isn't caught up by three, then they have to diagnose him so he can continue getting therapy. The diagnosis will most likely be cerebral palsy". And there it was, the big CP word laid out there on the table with my friend knowing nothing about it except the worst, like I did before I had Drake. He seemed a little taken aback. "Whoa", he said. "Yeah", I said.

I explained to him that CP doesn't necessarily mean being bound to a wheelchair, like I, too, had thought. I explained that it's an umbrella term used for many movement, balance, and coordination issues. He listened and was sympathetic to how hard that must be for our family.

"But everybody says Drake's case will be mild", I said. And while it's true doctors and therapists think Drake has a lot of potential to lead a fairly self-functional life, I realized that I was still lying. To myself. Talking around the issue, making it seem better than it is. We still have no idea what lies ahead for Drake.

Fun family day

We're lucky in California. It was 80 degrees last weekend. My husband and I decided to take the twins for a hike along the coast. At 23 lbs, Drake is getting too heavy for the Baby Bjorn front carrier (at least for me to carry him in it) and his legs are so long that they hit your thighs when you walk. A friend had passed down a Kelty backpack baby carrier that we hadn't used yet. I wasn't sure Drake would be stable enough in it, but we decided to give it a try. He did great in it! And not only that, he loved it! He was laughing with each bounce of my husband's steps. His head control is pretty good now, so he could handle the bouncing. And I felt that it was good strength training for his upper back, as the pack kind of tipped him forward and he was holding his head up straight to see everything. It was a fun day for the whole family.

Kinesio taping

Drake's PT has started taping his feet and toes with kinesio tape. He tends to clench his toes when he is working hard to do something or is bearing weight on his legs. She is using the tape to remind his toes to relax, so that the tightness in the toes doesn't travel up the legs.

Last week, she asked me if I'd be interested in learning how to tape his feet. Her thought was that if I did it, we could shave the time spent taping off our PT sessions. So, I watched and learned. Now, I am taping his feet every 3 days. The tape lasts about 3 days before it needs to be replaced.

I think I have seen small changes in the way he moves his toes since we started. Taping is a slow process, but our PT feels that if we continue for several months, it can have lasting effects.

I had asked her about TheraTogs, too, because I have read about them in other blogs. She said taping and TheraTogs do the same thing and that taping is better if the kid's skin can handle it. Taping is easier to put on and it stays put longer.

Rolling, rolling, rolling...

So, my mom has been visiting since Tuesday. A few days ago, I was in the kitchen making bottles and she was in the nursery playing with the twins. I heard her call out to me, "Drake rolled halfway across the room and is now under the crib!". I thought that sounded a little suspicious. I've never seen him use rolling as a means of locomotion. And I always question my mom's declarations, as she loves to exaggerate. However, when I walked back into the nursery to survey the new feat, Drake was indeed under the crib!

Then, today, he did it again in front of my husband. At least 3 consecutive rolls to get to a toy under the crib! Now, if he'd only do it for me... :)

The E.T. Phenomenon

I don't know abut anyone else, but when Drake is having an off day, when it seems like he is regressing or isn't doing the things he did well the day before, I have an off day, too. I feel pissy, snap at my husband and sister, get into a funk that I can't get out of. I know I need to be able to compartmentalize these feelings. Lucy doesn't deserve a grouchy Mama just because Drake didn't sit for as long as he sat yesterday. And when he does something new, like pats his hand over his mouth to make the "woot, woot" sound we've been teaching Lucy, I feel over-the-top happy and the whole day feels bright. It's so hard to separate his achievements and short-comings with my personal happiness and sadness. This is something I am working on.

Finding a job sucks

Last month I started looking for a job. I have been off since July, when my company folded. It's been great to be home with the twins. But, I also know I need a job out of the house, to keep my sanity and to get me dressed in the morning. I am finding it much harder to go back to work now than I did 9 months ago when I was returning from maternity leave. The twins were only 3 months then, and not doing much. Now they are 1 and are so much more fun and we are so much more bonded. I have loved having more time to work with Drake, too. I think he is really benefiting from having me at home so much. In fact, his therapists at CCS asked me if I really had to go back to work, since they are seeing so much improvement with Drake and credit much of it to all the work we do with him at home. That comment kind of pissed me off, because I felt they were questioning my commitment to him. Yes, I have to go back to work. We live in the Bay Area, own our home. Luckily, it's taking me a while to find a job, what with the economy and the holidays. I am not in a rush. :)

Evaluations

So, I just got back from CCS (California Children's Services) where Drake receives OT and PT. He just got a spot there after being on the waiting list for 4 months. His OT, Kitty, has spent his last 3 sessions doing an initial evaluation using the Peabody Test. I hate these evaluations, because it's never fun to hear what age his motor skills correspond to, since they are always grossly behind his actual age. Anyway, I've learned you've just got to face the music, so here goes: At 12 months actual age, he scored 3 months for locomotion (movement such as rolling, crawling, etc.), 6 months for stationary motor skills, like grasping and using his arms and legs, 6 months for fine motor, and 8 months for sensory/visual. I realize these scores are arbitrary. It's just setting a baseline so they can monitor progress when they repeat the test in 6 months. But, still, it's no fun to hear.

I try to come up questions that will trick them into telling me how they see him progressing in the future. Today, I mentioned our house has stairs leading to the front door. Would Drake be able to walk up those stairs one day or would we need to sell our house and buy a ranch-style home? However, they don't ever take the bait! All they ever say, is, "We'll see", "It's too early to tell"... Well, today they said that he should be able to get up the stairs.

They feel that Drake's greatest strengths are that he is super motivated to try. He works so hard to do all the things his sister does. He is super curious and wants to get into things. He is also very tolerant and easy-going. He lets his therapists work with him for an hour and is still smiling at the end, even when he's being stretched and twisted. He also has zero sensory issues, he loves to be bounced and swung and moved around. All these things bode well for his physical progress.

Musings at 12 months

The twins turned one on August 29. But their due date was November 5. I have always thought of their real age as their corrected age. Probably because it helps me rationalize Drake's motor delays and Lucy's small size. But now that it is past November 5, they are officially one, delays and littleness be damned.

Drake is a big boy. He is now 22 lbs, 31 inches. He is rolling well from front to back, both to the right and left, though he prefers to roll to the left. He has just started to roll from back to front, but he always rolls to the right, and often doesn't make it quite all the way to his tummy. He is making great progress with sitting. He can prop sit for several minutes and is starting to reach for things from this position, without falling over. He will also lift both arms off the ground, sit straight up, and hold that position for several seconds. We are really trying to work on strengthing his trunk, which has low tone. But now that he can roll so well from his stomach, he doesn't want to spend any time there.

As anyone who has a child with CP will tell you, it's so frustrating to not know what he will be able to do in the future. With typically developing children, you have milestones that are more or less predictable: sitting at 6 months, crawling by 9 months, walking around a year. But children with special needs don't get milestones because even if they have the same diagnosis, they often progress at very different rates and in very different ways. I, of course, made my own milestones for Drake: sitting by 12 months, crawling by 18 months, walking by 2 years. I chose these ages from things I have read and from my own hopes for him. But now he is 12 months and not really sitting. And I can't imagine him crawling 6 months from now. It's a lesson in patience, I guess, among other things. I am very happy he continues to progress, even if it's slow to come. And I try to focus on all the things he does well, such as eating! He loves to eat and is eating most finger foods with little to no problems. It isn't beautiful watching him scoop up food from his tray, but he almost always gets it to his mouth, and chews and swallows like a champ.

Lucy is a little girl. She is 16 lbs, 28 inches. But, man, she is all over the place. She is crawling like a mad woman, pulls to stand on everything, and cruises furniture. She walks on her tippy toes (I think she wants to be taller!). She doesn't seem interested in walking forward though, she likes to side step. She won't hold your hands and walk with you, for instance. But, that doesn't surprise me really. She is Miss Independent. She likes to do things on her terms. Like eating. She doesn't like to eat. Or rather, she likes to eat, but only the things she wants. Like Pirate Booty and graham crackers. And occasionally, cantaloupe. That's about it.

I love watching her master new skills each day. It's hard to watch her progress so quickly, while Drake progresses so slowly. But I am so proud of all she does. And I think it's great for Drake to have her to watch and learn. He loves to watch her move around.