Drake and Lulu

Conductive Education hopeful

2011-04-12T14:13:00.001-07:00

Haven't really blogged about Drake in so long. Things have been busy and to be honest in the Drake world there hasn't been much to report besides feelings of guilt around how little time I have to work with him and how bringing another child into our family will only take more time away from him.

He has been going to his typical preschool since August and it's going well, I guess. He likes the teachers and kids and vice versa and I think the socialization has been good for him. But there is very little therapy or self care skills going on there as it's just a typical preschool with a class of 20 students. I have been feeling so guilty that he doesn't get more than two 45 minute sessions a week with his PT, so he gets no time to practice in his walker or work on standing. And with my husband and I both working full time, there is little time for us to work with him on it. He just w-sits all day and crawls around and plays and has fun, but isn't working on improving his motor skills. Same with potty training. We do a little at home when we can, but we are never home and the school won't potty train as they have 19 other kids to look after and no time to put a kid on the potty every 30 minutes.

I have been very interested in trying to find a conductive education school for Drake, but none exist in the Bay Area. But recently I found out that one is starting in the fall, and I am freaking out I am so excited. We met with the teacher today and she is amazing and thinks Drake is a perfect candidate for CE. I don't know what this all means yet, but I haven't felt this excited in a while. I feel like Drake has been stagnating on motor skills because of our lack of involvement/time. He is progressing wonderfully verbally. He talks all the time now and you can understand almost everything he says. But there has been little progress with the walker or standing or potty training. CE aims to integrate all this with education to boot.

We are trying to get a second round of botox for D, too. But my insurance changed this year and it's been hard to get approved. Blah.

And did I mention I am now 35 weeks pregnant! :)

Mental milestone

2011-03-11T14:16:00.000-08:00

Today I am 30 weeks, 3 days pregnant. The most pregnant I've ever been! I am one day further along than where I was when the twins were born. This has been a major mental milestone for me, so I am happy to be here. So far, my cervix is cooperating, and I am hopeful to go another 6 weeks or so (or maybe even further!?!). But regardless of when this baby comes, I am appreciating each day this little one get's to spend inside and not in the NICU as a result of prematurity.

First school pictures and conference

2010-12-30T14:07:00.000-08:00

Drake had his first school pictures taken in November. The school had a photojournalistic-type photographer come in and take the kids photos. She did such a great job on all the kids. But of course, I thought Drake's pictures were the absolute cutest of them all.

We also had our first parent-teacher conference for Drake. It went really well! I was a little nervous, as he is the only kid with a disability in his class of 20 typically developing kids and I was worried they were going to say he is too much work or he seems lost, etc. But he is doing great there and the teachers and other children love having him. They talked about how he plays so well with the other kids and how they ask about him on the two days a week he isn't there. We had questions for them about his cognition as he is behind his twin sister in terms of language acquisition and knowing letters, numbers, colors, alphabet, etc. They didn't seem concerned at this point. They felt he was in the normative range for a just 3 year old. So that was good to hear. The school has been great about modifying activities for Drake, like lowering the water table so he can high kneel at it and getting a chair for snack/lunch that has sides and a pommel to keep him from slipping forward. We invested in thick pair of rain pants that he wears outside when it's wet as he still crawls around as his form of mobility. He has been going 3 days a week since September, but he will go 5 days a week starting Monday.

I feel lucky we found this school, given our IEP options were so poor. He will go here again next year most likely, though I am researching another private preschool that also has baby care for the wee one coming in May. Would love to have my whole brood together.

Baby on board

2010-11-11T16:27:00.000-08:00

Yup, it's true. I've got a bun in the oven. This was a totally unexpected, surprise (natural!) pregnancy, so we we are still reeling from the shock a bit.

It took us two+ years and a round of IVF to get the twins. I didn't go on birth control after them because we thought we didn't need to. In the three years since their birth, nothing. Until a couple months ago, when I got a surprise positive pregnancy test! I am now about 14 weeks along, due in May. It's just one (thankfully!) and things are going well so far.

Of course, I had a million feelings when we found out. Scared of being pregnant after my nightmare twin pregnancy and pre-term birth / NICU experience. Will I be able to carry this baby to term? Worried about how I will care for a newborn while having a walking and non-walking toddler. Will I be able to give all three the individual attention they need and deserve - while working full-time? What about finances? Can we afford three kids, especially with Drake's expenses for equipment and therapies? Oh my god, we will need a minivan!

But admist these concerns, we are excited and think a new sibling for the twins will be good for our family. And doctors think I can have a fat, term baby. :)

So fingers crossed that happens.

Red boot

2010-10-14T11:22:00.000-07:00

Serial casting round one! His physiatrist only ended up casting his right leg as his left ankle has good range of motion. So far he doesn't seem to mind it at all. He is very proud of his new red boot!

Walking videos (featuring the SWASH)

2010-10-03T12:42:00.000-07:00

I have been wanting to share Drake's gait/walking improvement with his new hip orthotic (SWASH). Here is a video of him walking without the SWASH. Here is a video of him walking with the SWASH.

I know I am holding his hards too high when we walk. :) But, it's amazing how well the SWASH corrects the scissor gait. He is now walking much more as he wears it several hours a day. He can also crawl and sit in it.

August

2010-09-14T09:40:00.000-07:00

August has been a busy month. First D had Botox injections in his legs and wrist on the 17th (post below). It took about 2 weeks to really kick in, but we have seen good improvements in his muscle tone. He is much, much looser to stretch. He is standing on flat feet instead of his tippy-toes. He is doing more as he sees what his body can do now. More pulling to stand (as he has a stronger base of support with flat feet) and more walking holding hands or in his walker. He still has a scissor gait, though it is reduced due to the Botox injections in his abductors. He just started wearing a hip orthotic called a SWASH (I think that is what it's called). It's like a rock climbing harness that goes around his waist and has straps around his thighs. It helps keep his hips externally rotated. He wears it over his pants. I will take a picture of it. It has made a big difference when he is wearing it for walking with a straight gait and when he sits in it (like on a bench or chair) he is very stable, too. When we did the Botox we also had a hip x-ray done and his hips are fine for now. But this orthotic will also help keep his hips in a good position as he grows.

On the 29th, the twins had their 3rd birthday! We had a great party with a bunch of kiddos and their parents. We rented a bounce house, which was a hit. Everyone, including the adults and Drake, enjoyed bouncing. I felt the bounce house was a great equalizer actually, as everyone is crawling around and falling over in there. But, man, can't believe my babies are 3!

Lucy started her preschool on the 23rd. She loves it! It's a Montessori program. The kids are always cooking and cleaning and doing art projects and riding bikes. It's been wonderful for her.

On the 30th, we got to tour the school where Drake was placed through his IEP. It's a CDC housed in a public elementary school. It's in a portable in the back, with a poured cement concrete playground with no play structure. I tried to keep an open mind as I walked into the classroom. Kept reminding myself it's the people that make a place. The people inside were great. Within this inclusion classroom was a really nice special ed teacher that has 4 special needs kiddos in the class and a general ed teacher that has 12 typical kids in the class. But there was zero diversity, every kid was African American and low-income. And none of the special needs kids had a physically disability. They all walked and talked great, but had cognitive or behavioral issues. And the class is only from 8:30 am to 11 am. So, 2.5 hours a day. And the school is not in a convenient location to our house, especially during the morning commute.

With all these things stacked against it, we decided to turn down the IEP. I found a wonderful private preschool that will take Drake 3 full days a week and the other 2 days he will be home with a nanny and going to therapy appointments. This school has one other kiddo in the class with a physical disability, a little 4 year old girl who walks independently, but with a poor gait and wears AFOs as well. The school said when she started she was crawling and then walked with a walker and then independently walked just a few months ago. So they have the experience with kidddos who need extra help getting around.

Today is Drake's first day there! He is so excited. It's been so hard for him to watch Lucy go to school since the 23rd. He was bursting with excitement this morning. Had his monkey lunchbox all ready to go.

So, a busy month and lots of changes, but I am feeling good about it all for the first time in a long time.

Botox day

2010-08-17T13:49:00.000-07:00

Today was the Botox day! We had an 8 am appt so we were up and out the door by 6:30, which was good since D couldn't eat or drink anything before the procedure. The hardest part (which the doctor warned us would be) was watching D go under general anesthesia. There were too many lights, sounds, monitors and a little toddler on a huge sterile bed in the OR. I was having NICU flashbacks. It was almost unbearable to watch D go from wide awake to passed out in 45 seconds. I held it together until he fell asleep then burst into tears.

He ended up with 5 injections. His right wrist and the abductors and calves of both legs. We were allowed back in the room after it was over to wait for him to wake up. It took about 10 minutes and he woke up and was in pretty good spirits.

Now he is home, eating and drinking and playing and seemingly back to 100%. We will start to see the effects of the Botox in 3-7 days. So now we wait. Fingers crossed we see some real improvements in his mobility.

IEP Day

2010-07-30T16:37:00.001-07:00

First off, Drake's botox injections got delayed because he got a chest cold days before the procedure and we had to reschedule. He is now slated to get them on 8/17. Hope he stays healthy!

We had Drake's IEP meeting today. He qualified for an an IEP for Orthopedic Impairment. It went as well as can be expected, I guess. I mean, we got what we were pushing for, which is placement in an integrated preschool classroom. The class is a CDC, Children's Development Center, and will have 20 3-4 year olds, 14 of whom are typically developing, mostly low income kids, and 6 of whom have special needs. There is a general education teacher in the class as well as a special needs teacher for the 6 special needs kids. We don't know what types of needs the other kids have, except that this type of classroom is the highest functioning group cognitively. There is also supposed to be have a great special needs teacher in that class and a great speech therapist (he qualified for once a week group speech therapy at school).

I am happy they thought he could do well here.I am a little worried about the idea of 20 3-4 year olds running around if he is the only one crawling and also that the large size of the class could be tough on his easily distracted mind.

Hubby and I have yet to see the school or classroom since it's summer, so we didn't sign the IEP. We want to meet the teacher, get a feel for the place first. So we are going to check it out in early Sept once school starts. If we think that class will be too much for him we can look at an all special needs classroom that only has 8 kids max. He would get more 1:1 attention in that class, but there will be kids with more severe cognitive issues. It is still an option in my mind.

The last option is trying to find a private preschool that will take him or keeping him home with a nanny. We feel a nanny is the worst option as he is so ready for school socially. He talks about school constantly and wants his lunch in a lunch box since his sister has been going to preschool camp this month. We also feel a private preschool isn't ideal as he would be the only kiddo with special needs most likely and we don't want him to feel like he is the only one in the class who has a hard time doing things, needs more help, etc.

Ah, it's been a long day. Lots to process, but overall, I was pleasantly surprised... so far!

Big month

2010-07-12T16:47:00.000-07:00

This is a big month for Drake. He has his first IEP evaluation tomorrow: speech and psych testing. On Thursday, he has the PT and OT evaluation. At the end of the month, they are supposed to make his classroom recommendation.

Next Tuesday is Drake's first Botox injections. It will be under general anesthesia. I am a little worried about that. And the fact that the appointment isn't until 10 am and he can't eat for 12 hours before. He will be cranky and starving without his normal 8 am breakfast.

Okay, back to cramming for the IQ eval tomorrow. We are doing overtime on colors, numbers, alphabet, shapes, etc... :)

Open cup

2010-05-25T19:24:00.000-07:00

About 6 months ago, we started giving Lucy an open cup for meals when seated at the table. She still gets a straw-sippy for travel. Of course, Drake saw her (his biggest motivator) drinking from an open cup and decided he was going to do it, too. Every meal, he'd ask the same thing. "Juice?". So, I'd hand him his straw-sippy of juice. "No. Cup"!"CUP"!!!

So we started giving him a cup, too. At first, he soaked his shirt almost immediately, due to quick, uncoordinated hand to mouth movements and trouble handing the fast fluid intake. But, practice make perfect and now he is just about perfect. Not bad for a kiddo who has, what I'd consider, about 80% function in his left hand and 50% in his right.

Please note that I don't normally yell directives at him while he drinks, I just wanted to get it all for the video. Helps me remember where we came from.

*at the end he says "more" through a stuffy nose

Good ears and teeth

2010-05-14T17:07:00.001-07:00

We are getting Drake and Lucy all ready for school in August. They both had hearing tests (required because they were preemies) and passed with flying colors. They also both went to the dentist for the first time. Good teeth, good palate shape / bite and no cavities!

I have ordered our first piece of durable medical equipment; a stroller that can be secured in the school bus.

Now, they just need some cute backpacks and lunch boxes and we're ready to go!

This and that

2010-05-11T19:58:00.000-07:00

Haven't posted for a while. Things are pretty status quo. Hubby and I went to the Grand Canyon for 5 nights and 6 days without the kids. That was the longest we had been apart from them. It was a fabulous getaway, but I felt it was just a bit too long (for me, not the kids). My parents came out from the East Coast to watch them while we were gone and the kids did great. Barely seemed to notice when we got back. I know we are lucky to have parents who will watch two 2 year olds for a week, especially a 30 pounder who doesn't walk. They are awesome.

We started 6 weeks ago with a new speech therapist as we got booted from our state's speech services due to budget cuts. I have to say it was a great thing. The new therapist is amazing and Drake does much better in a clinical setting. There are too many distractions at home with Lucy.

His therapist went so far to say at his visit that he is "on fire" right now. It's true. He is making a ton of progress verbally. He consistently puts 3-word phrases together. The other day he said to me when I walked in the door from work, "Hi Mom". Then, "Mommy boots off"?

There are also some more subtle upswings happening now, too. He is doing a ton of imaginative play. Feeding his baby, talking on the phone, and just generally being silly to get a reaction, like putting his blanket over his head when he crawls around. The twins are also playing so much more together. It's fabulous to see them laugh and interact - and even fight.

B is for Botox

2010-04-14T20:53:00.000-07:00

Yes, we are going to try Botox. We met with a new physiatrist today who thinks Drake could benefit from it (as does his PT). We are going to do injections in his abductors (inner thighs). That muscle is definitely where he is the tightest and it causes him to scissor his legs when he takes steps. Her thought is if we can paralyze those muscles we can work on building strength in the outer thighs and other muscles for easier walking. She also thinks it will take some of the strain off his hips, which she is worried may become negatively impacted if he continues to pull in so hard with his abductors. He will have to be under a light general anesthesia for the injections. To be honest, I am most worried about that part. He has never been "under" before.

So, here we go. The first installment of the 'nip and tuck'. I am happy to be trying something though, I have to say. I didn't like his old physiatrist who was all about sugar coating things and waiting and seeing. I want action. I hope we are making the right choice for Drake, though it doesn't seem that hard to decide to do it, being temporary and relatively very risk-free. We have to get on the list to get the shots, so it will most likely not be for a few weeks.

Drake did not get accepted into the preschool I mentioned in my previous post. We brought him for an evaluation and he played with the kids in his potential class for about 20 minutes. They were all 3 + years old and so sweet. "Is he a baby?" they asked when he was crawling around amongst them. :) Anyway, the head teacher and director felt Drake would be in over his head in that class, which I agree. He would be the youngest of the group and with his mobility issues, seems even younger. They recommended the next year down class for him, in which he would be the oldest 3 year old. Unfortunately, no spots in that group now, but we are back on the waiting list.

Good things

2010-04-08T20:11:00.000-07:00

I love the "Good Things' posts that Katy at Bird on the Street does sometimes. Here are a few good things happening in Oakland.

1) About a year and a half ago, when I went back to work, we looked into sending D & L to a daycare / preschool that is primarily typical kids but known for accepting some special needs kiddos. We toured the school, told them about Drake and were told they had a waiting list. We got on the list, paid some nominal fee, and proceeded to go the nanny route. I had pretty much forgotten about said school until Monday, when I got an email saying they had a space for Drake. We have pretty much committed to sending Drake to the state funded special needs preschool in September. But I was so warmed to know that when his name came up on the list, they emailed me. They didn't pass him over because they know he has CP. They emailed me and said they had a spot, and how was his development coming along, and would we like to meet the head teacher of his potential class and see if there could be a fit. We are going to meet her next week, and although I still think the special needs preschool will be a better fit for him right now, I was proud of the school for keeping an open mind and be willing to include Drake.

2) This article.

3) "Mama"? "Yes, Drake". "I wuv you".

Sledding!

2010-02-21T20:47:00.001-08:00

Friday was my birthday, so we headed up to Lake Tahoe to spend the weekend in the snow. It was so much fun! My hubby and I got on the slopes in the first time in two years (managing them in the lodge while the other skied was not as much fun) and the twins went sledding for the first time. Last year when we went up there, Lucy was just barely walking and Drake was primarily rolling, so we put them in backpacks and took them for a snowy hike.

This year, I invested in waterproof pants, boots, and mittens and we made a (very) little sledding track behind the cabin where we were staying. Drake especially loved sledding. He kept asking and signing for "more". It was a little hard for him to crawl around in the snow, but man, he was determined.

Here is a cute video of Drake and I sledding.

Evals and Preschools

2010-02-08T11:10:00.001-08:00

Home from work today with a nasty sinus infection. Has anyone had one of these before? I feel like the left side of my face is about to explode. I have so much pressure in my sinuses that my teeth even ache. Anyway, I figured a post would be a good way to distract from the pain.

Let's see. Drake just had his latest 6 month evaluation from the Regional Center. Overall, he made progress in all areas except gross motor. I am an analytical type and I keep a spreadsheet of his age equivalencies at each evaluation. According to my spreadsheet, he aged 4 months overall in 6 months. So, while he continues to progress, he isn't making up any lost ground.

I should clarify that this evaluation excluded speech. His speech therapist also just evaluated him and he is making a lot of progress there. He went from 6-9 month level in receptive to a 18-21 month level. He went from 9-12 month level in expressive to a 24 month level. So, he made up a lot of lost ground here. He is within normative levels for expressive, I think. He has over 100 words and is starting to combine them. And like a typical 2 year old, he loves to say 'No'. :)

We have a meeting on March 12 to start the transition from the Regional Center to the public school district. I can't believe my babies will be turning 3 on August 29 and starting preschool in September! Because they have summer birthdays close to the start of the new school year, we are doing what we can now to move the process along quickly. Ideally, we would know by the end of June where Drake will be placed in September.

It has been an emotional journey for me deciding on preschools for the twins. Of course, I hoped they could to be together if possible. I toured a bunch of preschools that had been referred to me by parents and therapists as typical preschools that are open to having special needs kids.

But after touring these schools and talking to their directors, some of whom seemed more open to Drake than others, I realized that these preschools probably aren't the right place for him right now. Their outside space isn't set up for a crawler, for example. And these kids spend a lot of time outdoors! I know that Drake would want to be out there, too, and it would be hard crawling around on cement and wood chips and dirt.

I realized that I have to stop thinking about them as twins for now. Instead, I have to think of them as my two kids. I don't want to do a disservice to Lucy who is so ready for a typical preschool. And I felt I was limiting what preschools I was looking at because I was keeping Drake in the back of my mind. So, to make a long story short, I have Lucy enrolled at a great montessori-based school starting in September. She will go there 9 - 3, Monday - Friday.

The school knows about Drake and may be open to supporting him if and when the time is right. They mentioned that it would need to be the perfect storm in terms of having a classroom with an experienced teacher who could also support an aide for Drake. But even if that storm were to hit now, I just don't think the time is right for him. I am hopeful I will love the preschool options provided by the state school system. I plan to send him to preschool in the morning and have him home with a nanny in the afternoons. The nanny will pick up Lucy from her school at 3, so D & L will get to have a few hours together each day, too. This perfect plan is all based on us loving Drake's preschool options. I am optimistic, but if we hate them, I think we will keep him home with a nanny for another year and see where he is the following September. Maybe he will be ready for Lucy's school then? Who knows.

I sense that I am at the beginning of a whole new challenge; school systems, esp for special needs kids. Preparing myself for battle.

Lucifer

2010-01-13T11:12:00.000-08:00

I am having such a hard time with Lucy. Suddenly, she is TOTALLY two. At least that is what I am hoping explains her increasingly defiant behavior. Because if this is an emerging personality trait, she’s a short block away from being disowned.

Tantrums, spitting and throwing food are just a few of the daily events I deal with. The food throwing is the worst. If you don’t have a plate of food in front of her when she sits down, she tosses her placemat. If you do have food in front of her and she tastes a piece of pasta and it’s too hot, the bowl is on the floor. Sometimes, she’ll just take one look at her plate of food and throw it. Then, the food throwing is followed by screaming and pushing her feet against the table so that her chair slams into the wall behind her. If that doesn’t get your attention, she starts spitting. On the table, the floor. I am waiting for her head to start spinning next.

I have tried everything. Scolding her, ignoring her, putting her in time out… it doesn’t seem to matter. I know I have to be consistent so I am trying to choose one technique and stick to it. I have decided ignoring is the best practice, but it’s hard. Her food is on the floor, she is screaming and slamming her chair into the wall. Eventually, she will calm down or get distracted by a sound or something and pull herself together. But her food is on the floor and now she wants to eat it. I have been calmly picking it up and giving it back to her. She will sometimes eat it, sometimes throw it again.

If I take her out of her seat, she wants to be held. Then, when she calms down, she wants to eat sitting in my lap. I don’t want to get into this habit. So, I tell her she needs to eat in her seat. Back to the tantrum.

I am at a loss. What I don’t want is to get in the habit of her not eating at mealtimes and then demanding to eat an hour later. Any suggestions here?

There are also many tantrums over nothing. I can ask her something as neutral as does she want to sing a song and that is enough to set her off – “NOOOO!!!!” followed by screaming and laying on the floor and kicking her feet and then screaming for “lovey” (her blanket). These tantrums I just ignore. I mean, come on.

Man, this is hard work. Drake is like a dream toddler compared to her. He likes to say ‘no’ to everything, but that I can handle.

Potty practice

2010-01-09T21:19:00.000-08:00

I know we are most likely years away from potty training Drake, but maybe only 6 months or so away from potty training Lucy (she still can't pull her pants up or down all the way, but is getting close)? Feeling optimistic, I went out and bought a potty for them to start getting used to. So far, Lucy wears the removable bucket as a hat and they both only want to sit on it fully clothed. But, (since I can't see into their diapers) I don't think they are doing much once there.

Drake asks to sit on it a lot. Novelty, I think. I just love this picture of him on the pot. He is really starting to look older, not babyish at all! His glasses, in case anyone has noticed are missing, have been flung from the stroller on a walk and we are currently awaiting delivery of another $200 pair. Grrrrr.

Off the couch

2010-01-07T19:53:00.000-08:00

I feel like the 'biggest loser' but on Monday I started Jillian Michael's "30-Day Shred". It's a 20-minute home workout that you do for 30 days -- and she claims will help you lose up to 20 pounds. Well, I know I am not going to lose 20 lbs as I am not willing to give up my nightly glass of wine and other comforts, but I do hope to lose maybe 5 lbs and tone up a bit, especially in the gut region. I just finished day 4 and still feel like I am going to puke during the ab workout. But I will feel like even more of the biggest loser if I can't do 20 minutes of exercise for 30 days, so I will push on to a flatter tummy!

In other off the couch news, I realized the other day that I never have to watch Drake on the couch anymore. He can get down by himself and every time he does it 'feet first', which I swear we worked on for months. It just sort of occurred to me that I think nothing of leaving the room with him on the couch. I still have to help him get up on the couch. He is almost there, though. He pulls to stand and leans forward on it and gets his left knee up about a 1/2 inch from the top of the cushion.

Resolutions

2010-01-03T20:21:00.000-08:00

I have so many resolutions this year, it isn't even funny. At the risk of boring anyone who reads my spotty blog, here are the top five:

1) RELAX. I have felt so wired and anxious and high-strung as of late. I am worried about Drake in general, about finding the right preschool for the twins, about my health (I had a stage 1A melanoma removed from my leg last year), about my marriage, basically about everything except my job. I know I need to take a deep breath and focus on all the positives in my life. Drake is doing well, I have a couple leads on really great preschools, including one that would eventually take Drake, my melanoma was caught early and they cut it out, my husband and I are great friends and partners at our core...it will all work out.

2) EXERCISE. I still have 12 pounds to lose to get to my pre-baby weight. I know 12 lbs isn't that much, but it's the difference between the pants I wear now and the cute pants I have tucked into the bottom drawer of my dresser. I bought an exercise bike for the house a few months ago, and was using it a bit, but have fallen off the wagon since Thanksgiving when I got sick and then the holidays and now I am running out of excuses. Except that I am waiting for American Idol to start and then I will bike as I watch...

3) MORE EXERCISE/STRETCHING FOR DRAKE. We used to be so good at stretching Drake every morning. Lately, we have fallen off the bandwagon. I want to resolve that we stretch him AT LEAST once a day. We have been pretty good about the stander. He is in it at least once a day for 30 minutes (not twice a day like his therapists wants), but we have seen improvements in his leg strength already.

4) MORE TIME FOR HUBBY. This one is tough. We joke (if you can call it that) about our top 3 life priorities right now. His are: 1) work 2) kids 3) me. Mine are: 1) kids 2) hubby 3) work. As you can see, I am his least priority and he is my second highest. I really want to work on being a better wife, but it' s hard! After working all day, then coming home to put kids to bed, I am exhausted and barely feel like making dinner and having exciting, challenging conversation and passionate sex all night! Got to work on all three....

5) FINISH HOUSE STUFF. We live in California, notorious for earthquakes. Our house has what is called a 'soft story', a room over nothing basically. That room happens to be our bedroom. For years we have said we would put the cash towards stabilizing this room. We really need to do it this year. We have interviewed architects, gotten bids, we just need to PULL THE TRIGGER! It's pretty expensive, which is the reason we keep dragging our feet. But this house won't be worth squat when half of it has fallen down!

Well, I guess that's it. I have a bunch more little ones like not drinking so much wine (goes with losing weight), etc, but these are the biggies. Wish me luck!

Keeping up with the Jones' and Preschool Madness

2009-12-23T10:59:00.000-08:00

My offices close at 3 pm today until January 4, so hardly anyone is here today, and the ones that are are blowing off real work, like me! I haven't posted in a long time, not because there is nothing to write about, but because I have been so busy with the end of the year madness that I have hardly had time to breathe.

We are not going away for the holiday break and I am so excited about that. Usually we travel to the East coast to see my parents, but now that the twins are 2 and cost two extra seats AND flying across the country with them is about as fun as sticking a needle in your eye AND it's always a nightmare to travel to and around the East in winter anyway, we opted to stay home. I am a tiny bit sad about not seeing my family and wondering how it will be on Christmas Eve with just my hubby and I, but am planning on making a yummy dinner and got a nice bottle of champers, so it won't be all bad! The twins love our Christmas tree (our first one since they were born) and get really excited when we turn the lights on in the evening. We have been opening the doors of the advent calendar each morning and they have fun identifying santa and horses (reindeer) and mamas (any woman pictured) and trees. It's cute.

Other than the upcoming holiday break, my mind has been filled with thoughts about walkers and preschools. I had a mini breakdown about Drake and (his lack of) a walker a few weeks ago. It seems all my bloggy friends kiddos and kiddos his age at CCS are starting to use a walker. None of this therapists have even mentioned a walker to me. So I finally asked, and his PT told me he wasn't ready. But I pushed and wanted to see if he could do it. So she got him all strapped into his AFOs and stood him in a reverse walker. He stood there for a minute or so, then slowly kinda sank down onto his knees. It was a little heartbreaking to see, but I saw what she meant about not being ready. I just get impatient. Everyone always says how functional Drake is and how his CP is mild/moderate and how well he is progressing. But then I see him at 2 years old and barely able to stand for a minute in his walker and I get confused by the mixed messages. He also steps with a scissor gait (mostly at the ankles), which I get concerned about, but his PTs don't seem so worried about it.

So, I finally gave in and borrowed a stander from CCS and we've been putting him in that 30 minutes twice a day. Standing. Yes, it does come before walking! He does great in the stander actually. It's a very basic type, with pads around the front of the thighs to lean into and a belt around the butt/lower hips. There is no support for the upper body. He stands in it in front of a table and draws or plays or eats.

I have also been thinking about how Drake has very few doctors. Believe me, I am happy about that, but it also makes me think I may be missing something? He sees his pediatrician and a developmental pediatrician. And an eye doctor for his lazy eye. That's it. No neurology. No physiatrists. He's never had an MRI. He's on zero medication. Again, bloggy friends kiddos and other kiddos his age at CCS are starting to get botox and serial casting, etc. None of this therapists has mentioned these things to me. So, I finally just up and made an appointment with a great physiatrist at Children's Hospital Oakland who is practically impossible to see, but somehow I got in.

Will have to add my preschool drama later...

Determination

2009-11-29T20:56:00.001-08:00

Just love this picture of Drake my husband took today. He is crawling up the large stairs in our yard and you can see how hard he is working and the extension in his legs to pull his knee up over the lip of the stair.

Feldenchrist

2009-11-03T14:56:00.000-08:00

In addition to receiving PT and OT through state-funded California Children's Services, Drake also receives PT once a week at Alta Bates Summit Medical Center, which is billed through our private insurance. A couple weeks ago his PT there informed me that they would be sponsoring and hosting a Feldenchrist conference at the hospital. She said they were looking for a couple kids to be 'models' at the conference and would Drake be interested. She thought of him because he is so easy to work with and is a total people person. I said sure, knowing nothing about Feldenchrist, but wanting to be helpful and because I was curious about the method.

We showed up to a packed conference room with a table and a woman standing in the middle (I believe her name was Anat Baniel and supposedly she is very well known for this method). The whole room was silent as they were filming the whole thing. I surveyed the scene and wondered how Drake would do being so 'on display'. But I strolled him over to the woman, who had a great way with him, and she got him comfortable on the table and started demonstrating her techniques on him. It was truly amazing to watch. I really had no idea what she was doing and she made obscure references to the power of the pelvis and various vertebrae of the spine. There was lots of slamming of hands and feet on the table for sensory input and lots of jiggling the hips back and forth. She worked with him for 45 minutes and he was great the whole time. It was like he was on a float, smiling and waving from his table to the onlookers.

After the session, she noted how he seemed to be sitting straighter through the pelvis. I could see it, too. I don't know that this is something we will pursue further, but it was neat to see a different approach. And we got a $50 gift certificate to Whole Foods for being a participant!

Halloween

2009-11-01T19:51:00.000-08:00

We had a great Halloween. This was the first year the twins really got into it. Two years ago, they had just come home from the NICU. Last year, they were adorable dressed up as bugs -- Lucy a ladybug and Drake a bumblebee --but they sat in their stroller as we walked the 'hood and nodded off after a few blocks. This year, dressed as a pirate and a ninja, they eagerly reached into the bowls of candy offered at each house and enjoyed their first real piece of candy -- a lollipop.

Lucy is pretty much over the stroller these days. Our double umbrella stroller is semi-retired -- we now mostly use this cheap single umbrella stroller for Drake and let Lucy walk everywhere. Lucy boldly walked up the steps of each house we "treated". Myself or my husband would take Drake out of the stroller and carry him up to the door. Yes, it was a little tiresome taking him in an out of the stroller all night. But we wanted him to be able to participate, to knock on the door and reach in the candy bowl.

After we got home and put our over-tired, sugared-out kids to bed, my husband said, "I really can't wait for Drake to be able to trick or treat on his own." I realized through all of our ins and outs of the stroller, it never really occurred to me that Halloween could be hell on a mobility-impaired little one. All the walking, all the up and down the stairs, all the running to keep up with the high-on-sugar friends. It kind of bummed me out. We'd had such a fun night and at the end of it I was left thinking about future Halloweens and not savoring the moment of this one.

I consoled myself by thinking a) he will get up and down the street on his own, i just know it and b) he has a great wing-woman of a sister who will always make sure they are both long in lollipops.

Stander and mental spiral

2009-10-27T14:17:00.000-07:00

Yesterday I went to pick up Drake from PT only to find him all strapped into a stander. I can’t really explain what happened to my heart right then, except to say that it dropped a bit. He was being supported by padded “clamps” around his mid-section and thighs. There was a big tray attached to the front. There were springs and screws and lots of metal and wood. And he just looked so… trapped.

You see, Drake hasn’t needed any “equipment” yet. And no one has mentioned any equipment to us. So, it was a bit of a surprise to see him strapped into this contraption, especially since he can pull himself to standing already. His therapist saw my face and quickly said, “This is something I am just trying.”

She went on to say that she was trying to follow the directive of his developmental pediatrician. This doctor recently evaluated Drake and said she wanted him to be doing more standing. She wants more weight-bearing through the legs for bone density and for proper alignment of the hip joints. And Drake hates to stand, because he is all about being mobile. He wants to crawl, throw balls, and crawl after said balls. When he pulls to stand, it's as a means to get on the couch or get something off the table. He doesn't like to just hang out standing.

Given that, I feel successful when I can get Drake to stand at a table for 15 minutes. And I can’t do it alone, because someone needs to support him while someone else rolls him a ball across the table. Balls are very important to him right now.

The PT said that while 15 minutes of standing a day is good, she is looking for 30+ minutes of standing 3 times per day. And am I prepared to support Drake in that position for 1.5 hours every day? Well, no, I am not. I have another toddler running amok who needs supervision. Getting 15+ minutes ONCE a day with Drake is almost impossible.

The PT mentioned that this stander has so many springs and such because it is a model where it’s not locked straight upright. This model lets the whole thing move so the kiddo can practice weight-shifting. Hearing her reasons for the stander made logical sense to me. Because I work full-time and have another toddler at home, I don’t have the luxury of manually working with Drake for extended periods of time.

So, I asked her the other questions on my mind. Is this stander something we would borrow from CCS? How long did she think he would need it? Her responses made my heart drop further. No, we’d need to buy this and it’s about $1,800. He would use it for a couple years. A couple years?! I cared more about that comment than the money. All his therapists have said they think he will walk within a couple years. So, how can he walk if they think he needs help standing? She stressed that even if kiddos are walking they often continue to use the stander for stretching.

She also stressed that we didn’t need to decide now if we wanted to buy it. She was just trying it out because she wanted to follow through on directives from the dev ped. She said she wasn’t sure if he 100% needed it, but it’s something to consider.

I left feeling sad and discouraged. Sad from seeing my beautiful boy strapped into this contraption and wondering if this is his future? Discouraged because I don’t feel we do enough for him. His nanny is great, but it’s very hard with two toddlers and one care-giver. She tries, as do we on the weekends, but it’s tough to feel that we’re doing enough. There is very little real ‘therapy’ going on at our house outside of his various weekly appointments.

I know everyone feels this. I know everyone wishes they could do more. I know many parents have seen their children strapped into contraptions and some with more springs and screws than this one. I know, I know. I feel blessed for all that we have and for what Drake can do.

It was just a sucky moment. I think, too, we have been riding so high on all his mostly positive recent evaluations, that this made me realize that even through all the great stuff he can/will do, the CP just isn't going away and never will.

Aqua Boy

2009-10-19T13:54:00.000-07:00

I took Drake to his first “Mommy and Me” swim class yesterday. To say he loved it is an understatement; the kid seems to be part fish. He impressed his instructor with his calm entrance into the water and his complete lack of fear getting his face wet (and not just splashed, he likes to submerge his face in the water to blow bubbles).

We spent most of the 30 minutes “swimming” after a ball that he’d grab, throw, and “swim” to again. It was so adorable and encouraging to see him kick his little legs and move his arms to get to the ball. By the end of the class, she had him floating on his back across the pool, which he loved, too.

The pool is heated to a spa-like 93 degrees. And the class is tailored to kids under 3 who have physical and/or mobility issues. There were about five little ones in the class, all with a parent in the water working on the games with them.

We can’t wait to go back. It’s once a week through the winter/spring. I am really excited to have found “something else” for Drake to do that is fun and therapeutic. Also, his pediatrician said swimming is the best activity to do in winter as you can’t catch the flu in a chlorinated pool. It’s way less germ-y than the playground or gym-based class.

Appointments

2009-10-14T16:24:00.000-07:00

Drake had two evaluations this week. The first was his bi-annual clinic at CCS. I thought he was seen by a developmental pediatrician there, but it turns out she is a phsyatrist. At any rate, she was the one who 6 months ago told us she thought Drake could "outgrow" his delays and sent us all into that mind-place where miracles happen. I remember being more realistic and thinking "how do you outgrow a brain injury?", but left feeling happy that she felt so positively about Drake and his future development.

This time she was also very positive, but did note the high tone in his knees and ankles that she said she didn't notice so much before. She noted his preference for w-sitting. She noted neurological patterning that would most likely be with him for life. But she also noted how his reflexes are in the normative range, most primitive reflexes are gone, his range of motion is within a good functional range. She noted what everybody notes about Drake, how motivated he is to move, how cheerful and social he is, how great is is that he loves books so much. She feels very strongly he will be an independent walker. Her prognosis: rehabilitation potential good.

Three days later we say a developmental pediatrician who hadn't seen Drake since January. He was rolling and prop-sitting then. She was so excited to see him come crawling down the hall. The first part of the appointment was with her colleague who ran a battery of tasks to measure cognitive, speech and motor skills. Like other evaluations he's had, his social/emotional and cognitive skills are right on track, but surprisingly she put speech at 21 months, which is within normal range. His speech therapist put him at 12-15 months a month or so ago. I felt she was being generous with some of her tests - like if she asked where the duck was on a page in a book and he touched just that page, not the duck, she counted that as correct.

Overall, a great appointment though. She also thinks Drake will walk on his own one day, he is so motivated to move. She told us to keep up the calories as he burns so many moving around. She really wants us to work on more standing, both for weight bearing through the legs for bone building and for preparing to walk. The thing is, Drake hates to stand. He's like, what can I do here? He wants to move. He has places to go.

Always remember...he's the happiest guy!

2009-10-08T15:05:00.000-07:00

Mumbo Jumbo

2009-10-07T12:39:00.000-07:00

Lots of jumbled thoughts today...

Drake has his next clinic with the developmental pediatrician at CCS (where he receives his therapies) tomorrow. This is the doctor who told us 6 months ago that she thought Drake would "outgrow" his developmental issues and sent everybody into a tailspin of emotions. Obviously, he won't "outgrow" his issues, he may have good rehabilitation potential, but "outgrow", no. I am so curious to see what she has to say now.

Next Tuesday, he has an appointment with another developmental pediatrician that he hasn't seen for 10 months. She is more grounded in reality, so I am curious to get her take, too, and see how it jives with the doctor tomorrow.

Drake just got his next 6-month goals from his PT at CCS (these are to be achieved by February, when he is 2.5 years old):

1) Maintain a high kneel without holding onto anything for at least 15 seconds
2) Pull to stand through a half-kneel (he uses his arms to pull himself up mostly now)
3) Stand holding onto something with one hand while using the other hand to play with a toy

I think he can hit these. He is already getting good at #2, with just a little assistance to plant the foot that is being used for the half-kneel.

We need to buy a new car. We don't know if we should bite the bullet and buy a minivan. We are thinking we will have a walker and maybe a wheelchair to lug around within the next few years. But we have gotten by so far on a station wagon and would love to replace it with another station wagon or small SUV instead of a minivan if at all possible...

Had a great weekend get-away with my husband and the twins last weekend. Spontaneously rented a little cabin in the mountains for a couple nights and enjoyed apple picking and wine tasting and hiking amongst the giant sequoias. The crisp fresh air is so good for all of us.

AFOs

2009-10-01T13:39:00.000-07:00

Drake's new "dinosaur" AFOs came today! Here he is modeling them. They look a little long to me, but the fitter didn't seem worried since he won't be crawling in them.

Reunion recap

2009-09-27T21:20:00.000-07:00

Today was the hospital where the twins were born annual NICU picnic. It's a chance see your kids doctors and nurses and families you may have met in the NICU. The twins were in the NICU for 8 weeks, so I got to know some people pretty well. I took the kids last year and it was all still so fresh then, I was really excited and almost nostalgic to see some of the nurses and families I got to know. This year, those feeling were not there, but I still went, hoping to see one nurse and one family in particular. The nurse was there, but sadly not the family.

When you check into the reunion, you are given a name tag for your kid with the gestational age of when they were born and their birth weight. Then you walk around, looking for people you know and checking out all the other kids and their name tags. Most of the kids seemed to be two or younger which makes sense for the reasons I stated above. I can imagine the NICU reunion becomes less important as your kids age.

Of course, I homed in on all the twins. There are a lot in the NICU! Here was one set of twins, born at 27 weeks, toddling around. Here was another set born at 29 weeks crawling. And another set of 32-weekers playing on the playground.

I couldn't help it. Seeing all these twins in perfect developmental form brought back all these feelings of 'why me'. Of course I am so glad for these twins and their families that they are doing well. But seeing the twins born even earlier than my guys, oh I don't know if it's good for me to go to these reunions.

I just kept flashing back to the night the twins were born, and the doctors saying to us, "Oh, 30-weekers? Those are the big babies! They will do fine! No worries, they'll just be here fattening up for a bit!". And we believed them!

Working the system

2009-09-18T13:05:00.001-07:00

For the past 8 months, Drake has been receiving weekly in-home speech therapy through our state's Early Intervention program. However, California's budget crisis caused a new law to be passed that says children in this program now have to use their private insurance for speech therapy. And the Early Intervention program won't bill their services to insurance carriers, so no more home visits. Since we have private insurance, I was given 30 days to find new therapist.

I don't mind using my insurance to pay for speech therapy. I like using my insurance, because hey, I pay for it anyway. And if it means more kids without insurance get services, that is great, too. What I do mind is that we no longer get home visits. My hubby and I both work full time and every appointment out of the house is a logistical nightmare with our work schedules and child care. We already have 3 out of house appointments each week, this would add a fourth.

So I complained and sniffed around and found out that if you can show documentation that you are on a waiting list for speech therapy, EI will extend your home visits/services until you get off the said wait list. So what did I do? I found the longest wait list ever, over a year, at local hospital who provides pediatric speech therapy. I got a note saying we were on the list, sent it off to EI and got my home visits extended 6 months! We will revisit after 6 months and if we are still on the wait list, well, we'll get another 6 months!

Workin' it.

New tricks

2009-09-17T19:36:00.000-07:00

I feel some big changes coming, people, I just feel it! Drake seems like he kind of plateaued over the summer after he started crawling on all fours in the spring. Don't get me wrong, that was so exciting it could have held me over all year! But, you know, I get antsy for the next thing!

The crawling has gotten faster over the summer and he has started crawling over things or with things. He can now crawl up low stairs or over your legs and will crawl with a book, blanket or toy in hand. But the changes I am seeing now seem less physical and more cognitive and verbal. He used to only be able to say one syllable and would say "Ma", "Da" and "Ba" (for bottle). Now he consistently says "Mama", "Dada", and "Baba". He is also repeating back words a ton more. He loves to say "bubble". Another two syllable word! I feel like we are on the brink of a little language explosion, and that excites me.

Cognitively, I am noticing changes, too. If you ask him to get you a book to read, he will crawl over to the bookshelf or find a book on the floor somewhere, and crawl it back to you. That is a three-step thought process I am told: first, get the book, then, remember where to go to get the book, then lastly, bring it to me. Awesome.

He got casted for his AFOs yesterday and I am excited to see what they do for him. Just by wearing his borrowed AFOs I have seen changes in the tone in his ankles and legs. He gets onto flat feet when standing much faster than he used to. And he is also trying to "walk" on his knees. He can sort of pull himself forward into a high kneel without pulling up on anything and then tries to "walk" on his knees.

I feel changes comin', I just do.

Benched

2009-09-07T19:08:00.000-07:00

Drake has been working on sitting unassisted on a bench at CCS. When he wears a pair of borrowed AFOs, it really helps break up the tone in his feet and legs and he can sit for 30 minutes on the bench without falling off. 30 minutes is the max they will let him wear the AFOs since they aren't his and sometimes leave red pressure marks on his feet.

We were given the AFOs to take home and instructed to put them on him and have him sit on a bench for 30 minutes per day. It's amazing how quickly this exercise has strengthened his trunk and improved his balance! He can now do all kinds of upper body movements while sitting on this bench - clap, high five, play with a toy, eat - and still maintain his balance.

I took a video of him sitting on his bench today. You can see how he almost loses his balance a few times, but is able to self-correct. At the end, he is calling out for me, and even when he gets excited/anxious (which can kick in the tone), he still doesn't fall! This is only 40 seconds of video, but he ended up sitting there for a good 15 minutes, then grew tired of watching the US Open and wanted off...

Birthday re-cap and stats

2009-09-01T19:25:00.000-07:00

I can't believe my little dudes are TWO! Time has flown. Their birthday is such a bittersweet day for me. Of course, I love celebrating their birth, but I so wish their birth had been under different circumstances. I remember looking at the clock at noon on Saturday, and thinking about where I was two years prior, hooked up to a magnesium drip and wondering what the hell was going on and if my babies would live or not if delivered at 30 weeks...

On a more positive note, they did survive and we had a little party for their second birthday with a few toddler friends and their parents. It was hotter than PANTS here in Oakland -- 90 degrees easily -- and luckily we had bought them a water table for their birthday present, which was a hit with all the kids. Everyone in the under 3 set arrived in their party best and left in nothing but a wet diaper. I guess that is a sign of a good party.

Today, we took them to the pediatrician for their 2-year well-baby visit. Drake is 27 lbs (44th %ile) and 35 inches (79th %ile). Long and lean. Lucy is 20 lbs (3rd %ile) and 32 inches (17th %ile). Short and skinny. Their pediatrician was so happy with both of them, though. She wrote a prescription for Drake's AFOs, so those will be getting ordered shortly. We also talked about getting him on the waiting list for theraputic horseback riding, which he can start at age 3.

I am currently researching preschools for the twins to start next year when they are 3. I really want to keep them together, so it is a challenge to find the right school. It seems I will need to find God or gads of money. All the regular schools that are open to special kids are either associated with the Church or really expensive.

The search continues!

Happy Birthday!

2009-08-29T20:28:00.000-07:00

Today is Drake and Lucy's 2nd birthday (though I still think of their real birthday as November 5, their due date)! We had a fun party for them this afternoon and I am exhausted. I'll write more later and include some pictures.

Beach babies

2009-08-19T11:22:00.000-07:00

We just got back from a week in Ocean City, NJ. It was fabulous.

We rented a great house a block from the beach with my parents, sister and brother. My sister's boyfriend was also there for a few days, as were my aunt and uncle, my Dad's cousin, and family friends. It was definitely a full house at times, but I loved seeing everyone and we had many hands more than willing to help with the twins.

D and L loved the beach. They were completely exhausted and starving at the end of each day from all the fresh air, sun, swimming, digging and general beach action.

The kids daily routine was wake up, breakfast, beach from 9:30 until noon, back to the house for lunch and naps, back to the beach from 3:30 until 5:30, home for dinner and baths, and bed by 7 (my routine included coffee in the morning, a beer and a book on the deck during naps, and vodka tonics with my mom and sister in the evening). One evening we took the kids to the boardwalk and let them loose on the merry-go-round and the "flying dumbo" ride. They both did great on the rides. Drake was able to sit on his own horse for the whole carousel ride and loved going up and down.

WIth Drake's crawling, Drake was definitely the sandiest toddler on the beach. I am still finding grains of sand in various crevices. And his knees are totally exfoliated, too. But he did great crawling in the soft sand, the hard sand and in the little waves. He loves water and really enjoyed when we'd take him out to the deep water to kick and "swim".

There were a gaggle of toddlers on the beach daily (it is August on the Jersey shore after all) and Lucy had fun playing with the other kids. She was highly into digging and playing in deep holes that older children had dug in the sand. I think it was great for her to be with a bunch of typically developing kids her own age (and a little older). Though it made me a little sad wishing D could be in on the action, too. He'd get frustrated when we'd help him into a sand hole because he couldn't crawl out. So he spent more time crawling around and playing with the adults or by himself.

We missed a week of therapy and I didn't make him wear his glasses (didn't want them to get scratched with sand), so he (and I) got a much needed break from all that. He went back to CCS Monday, and his PT commented on how much more verbal he is just since last week when she saw him. Then his nanny said the same thing to me yesterday. It's true, he seems to be in a verbal spurt right now -- repeating things back more frequently, saying more new words, including a two-word combo: "all done"!

So a great vacation and now, back to the real world!

AFOs

2009-08-05T20:29:00.000-07:00

Well, they're a comin'...

Drake has clinic in September and they are going to prescribe him his first set of AFOs. He has been using a pair of borrowed AFOs during therapy and now it's time for his own casted pair, ones that fit his feet perfectly.

I am reminded by his therapists that AFOs are a good thing: it means he is ready to do a lot more standing and they definitely help him with that, as they force him off his toes and onto flat feet. But I can't help think this is his first "equipment".

He will start out wearing them only an hour or so a day, when we are working on standing. He still crawls and W sits the majority of the time, and the AFOs hinder that, so they don't want him to wear them all day yet.

Here we go!

Happy campers

2009-07-27T14:30:00.000-07:00

My husband and I have always loved camping. When we started to think about having a family, we'd talk about how much fun it was going to be to take our kids camping. Once they were born, we talked about waiting until they could walk, so it'd be easier on baby hands and knees. But now we don't really now when Drake will walk, so we decided to just take them camping anyway.

Sooo....we took them on their first car camping trip last weekend and it was (pretty much) a smashing success!

I did almost want to back out once I started to over-think the logistics. They have never slept in anything other than a crib or pack n play, and now we were going to ask them to share a tent and sleep on the ground? I figured naps were going to be non-existent, since it would be blazing hot in a tent mid-afternoon. And what about Drake and crawling around a campsite full of dirt, rocks and sticks?

But, we pushed through and went.

The drive was about 4 hours, and we stopped mid-way for food and diaper changes. They were great in the car -- napping, eating and "reading" books.

We got there and set up our site and the kids had a blast playing in the tent, rolling around in the sleeping bags, etc. I put Drake in a pair of hefty pants w/ reinforced knees and let him explore his new world. Did he get dirty as all hell? Yes. Did he love it? Yes.

They did amazingly well sleeping in the tent, too. We put down an air mattress that filled the whole floor of the tent, put them in their PJs and warm sleep sacks and said good-night. They cried a little at first, confused why they were shut into this tent by themselves, but quickly just started playing together and chatting and after a half hour or so, conked out, cuddled up together! I crawled into their tent to sleep with them when I went to bed. I was worried they'd wake up scared in the middle of the night. But they did great!

The next day, we put them in backpacks and went for a hike, then spent the afternoon on a sandy beach by a mountain lake. They loved the lake, of course. They are getting so confident in water. Both love being dunked completely underwater and are learning to hold their breath when they go under.

There were no naps as I suspected, but they were having so much fun being outside and seeing new things, that they didn't seem any worse for the wear. They were practically at home in the sleeping tent the second night (or just exhausted!) and we did another hike to a river the second day.

Then we came home, tired and dirty, but so happy that we made it through our first family camping trip and had fun doing it, too!

Speech eval

2009-07-23T10:48:00.000-07:00

So the latest report from D's speech evaluation came in yesterday. As I expected, he is still very delayed, but did make progress overall. He is currently in the 9 - 12 month range for both expressive and receptive language. 6 months ago, he was in the 6 - 9 month range.

He has about 5 -10 good words that he uses consistently and in the correct context. Supposedly, kids this age should have 75 words they use consistently and in the correct context AND should be using several two-word combinations, like "Mama's keys".

I tried to count all Lucy's words, and she has about 35 - 45 good words. But she is really in a word spurt right now. Tomorrow she could have 5 more. She's doing a ton of repeating new words back. She isn't putting word combinations together yet, though.

D's speech therapist remains optimistic about D's progress. She noted some of his physical delays are holding back his expressive language -- such as opening the chest for voice control and control over some mouth movements. He is slowly getting more control and she thinks as that matures, his language will really pick up. His drooling is really improved, I think because he finally got all his teeth in, but also because he keeps his mouth shut more, and doesn't need to open it when he moves or concentrates, which he used to. He is also swallowing his spit more effectively. I used to have to change his shirt twice a day, now it's just the occasional chin-wipe.

So again, progress is progress, even if it's slow progress.

Eval time

2009-07-19T21:12:00.001-07:00

Well, it's that time of year again. 6 months ago Drake had his last PT, OT and speech evaluation. That was December, when Drake was pretty much only rolling as a means of mobility, and pretty much rolling only to the right.

I was actually looking forward to this evaluation, because in my mind, he's achieved so much (especially in gross motor) in the past six months! He crawls, pulls to high kneeling, is starting to pull to stand. He sits independently and plays with toys with both hands.

However, his first reports came in and hit me like a ton of bricks. On paper, it shows he's only marginally improved in terms of age appropriateness. He is 21 months old and his gross motor skills only went from 6 to 8 months in locomotion, and from 7 to 10 in stationary! WHAT? Only a couple months progress in 6 months of awesomeness?

But when I sit back and think about it, I guess it seems right. Babies crawl at 8 months. Babies pull to stand at 10 months. That is how old Lucy was when she did those things. I guess it's easy for me to forget and to think how normal crawling at 21 months seems. Which is funny, given I also have a typically developing 21 month old.

His fine motor skills and language are pretty delayed as well. I am waiting on the reports from his speech therapist, but I am pretty sure it will be in the marginally improved realm as well. He has about 5 good words: hi, uh-oh, book, ba-ba, hot, hat. 6 months ago, he was at the 6-9 month level in language. Maybe he's at the 9 -12 month level now? We'll see.

The best news is that Drake is almost up to his age on his cognitive skills. He came in at 20 months for all the cognitive and social \ emotional evaluations. Woo-hoo!

I know these evaluations are just numbers and mean nothing about his outcome or his achievements. But, they are still tough to swallow, especially when I am seeing such progress and it doesn't translate on paper. His therapists remind me that the expectations are so much higher at this age than they were 6 months ago, when he was 15 months. So, it's easier to fall further behind at this age.

Whatever. I think he's doing awesome. And progress is progress!

What's awesome about Milwaukee

2009-07-06T19:52:00.000-07:00

We just got back from a week in Milwaukee where Andy's parents live. The last time we were there was last May, when the twins were 7 months old. I remember wondering if any of Andy's parent's friends and extended family would notice that Drake was delayed. I laugh thinking about that now...they were 7 months old! Neither of them were doing anything except laying around on the floor. Of course, no one thought or asked me a thing about Drake.

Fast forward to this year. 20 months old. Lucy is running and has a bunch of clear words. Drake is crawling and has a few sort of clear words. There is a noticeable difference in what they can and can't do. Funny thing is, this year I was less concerned about people asking me about Drake. Maybe I have reached a new plane of acceptance? I don't know. Sometimes I don't think he seems that delayed because he is making such great strides and I am used to him and think he seems like any other kid. But when you see him next to Lucy, yes, it is obvious he is behind.

But everyone who came over to see the twins (and let me tell you, there were a lot of people. his parents hosted a "sip and see" just for twin viewing) was loving and engaged with them and if they noticed something was amiss, didn't say anything to me. I really appreciated that. Not that I would mind explaining his delays, but sometimes I don't feel like telling his life story to strangers.

The other thing that was awesome about Milwaukee was the stairs in my in-laws living room. They have a big carpeted living room that is "sunken", so there are 3 low and wide steps getting in and out of it. Drake was all about the steps. And by the end of the week, was getting up them pretty darn good. Wish we had some low steps for him to practice on here.

The last awesome thing about Milwaukee is that the in-laws also watched the kids overnight one night so Andy and I could have a get-away to Chicago. Awesome!

The dreaded W sit

2009-06-24T15:34:00.001-07:00

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.

Sailor boy

2009-06-15T12:03:00.001-07:00

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

Save state services!

2009-06-04T19:43:00.001-07:00

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.

House of puke and poop

2009-06-02T19:19:00.000-07:00

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.

Just beachy

2009-05-17T17:46:00.000-07:00

We are having a sweltering heat wave here in Oakland, CA. It was 90 at our house today and like most old homes in the area, ours doesn't have AC. So, we headed to the beach in search of some cooler air.

Last summer when we took the twins to the beach it was a nightmare. Granted, they were only about 7 months old (couldn't sit unsupported yet), it was foggy and windy, and they cried on the blanket the whole time. Good times.

But now, at 18 months, it's a whole new beachy keen world. Lucy was heavily into digging and would proudly and dramatically dump her bucket of sand when it got full. Drake was crawling around on the hard sand near the water and would have crawled right into the ocean if I had let him. He loved getting splashed by the little waves and each time I would try to re-direct him to crawl towards dry land, he would turn around and head into the water again.

It was a great day. It was also kind of a trial run on "do they like the beach?" as we are going to the the Jersey shore for a week in August with my parents. Now, I know they are going to absolutely love it.

New specs!

2009-05-08T20:48:00.001-07:00

Lucy's next...

2009-05-08T15:57:00.000-07:00

Drake's speech therapist called to tell me she thinks we should have Lucy evaluated for speech therapy, too. Since Lucy is always around when she's working with Drake, I guess it's fair to say she knows where Lucy is / should be with language development. I guess I realize Lucy doesn't have many words, but I haven't been concerned. Her receptive language is amazing. You can pretty much ask her to go get / pick up / bring any number of things to you. She can point to identify lights, eyes, noses, apples. And she babbles all day long, complete with inflection and pauses.

But it's true she doesn't say much. She mostly just points at things she wants and says something that sounds like "gaack". Her only really clear words are "hi" and "bye" and "eye". She doesn't repeat words when prompted. The other weird thing is she doesn't identify people. If you ask her where is mama or dada or auntie, she doesn't point or go to or look to the correct person.

I am all for therapy, but I feel so over-scheduled as is, I don't know where to fit yet another appointment in! Argh, thought we had avoided therapy for Lucy.

18 months (corrected) today!

2009-05-05T07:56:00.000-07:00

My little dudes are 18 months old (corrected) today! Happy 1.5 birthday, Drake and Lucy!

Lucy got on the scale this weekend and she still only weighs 18 lbs! 18 months and 18 pounds. She is such a peanut.

It's a bloggy blog world

2009-05-04T20:08:00.000-07:00

It's been about 6 months since I started this blog. Before I got pregnant with the twins, I never really read blogs. It's kind of strange since I work in technology for an online social media company. I guess it's fair to say I read Pink Is The New Blog for my celebrity goss. But that was about it. Now I have a whole slew of blogs I read daily, most of them about parenting, parenting twins, and parenting twins with a disability.

I remember finding the first of the blogs I still read now early in my pregnancy when I had first trimester bleeding and was diagnosed with a subchorionic hematoma (SCH). I googled SCH and found Goddess in Progress, Everyday Stranger, and Urban Artifact (who has since moved her site). They were all moms pregnant with twins around the same gestation as mine and I remember being so excited to read their posts and see that I was not alone with my SHC and that everyone was doing fine. We all ended up having boy/girl twins and I still read their blogs today.

Then when Drake was given his PVL diagnosis and the CP term was dropped for the first time, I called my best friend and cried to her about Drake and the long unknown ahead. She did some googling and emailed me a link to Cerebral Palsy Baby. It was right when Darcie was starting to crawl at like 18 months or two years or something and she looked so good and "normal". I remember my friend saying and me thinking, "Okay, this may not be so bad if this is what CP looks like".

Then I googled PVL and found all kinds of horrific things, but also Waiting for the Miracle. I got to know Alice and her amazing mom. Alice has more involvement than Darcie, so that was another example of the disability I put into my "what you could expect" mental bucket.

I remember getting the courage to comment on Alice's mom's blog. It was my first comment on a blog. She wrote me back and I read the email on my phone at a movie theater (I have a really good memory, I could probably tell you what I was wearing, but I'll refrain). I remember reading her reply and bursting in tears. She nailed exactly what I had been thinking and felt. How she started the blog because she felt so alone and searches for PVL only returned medical lawsuits and horror stories. She had so much more personal positivity to bring and progress and love. I still read her blog and wait for her posts. She has written some amazing entries that I feel I could have written myself.

I also really like reading the Galli-ringo Family, though she doesn't post much. Her girls are older than my twins, and her daughter Hannah seems like she is doing great and gives me hope for the future. She wrote an amazing post about taking her girls skiing, which left me in tears. We are so hopeful to have Drake ski or be able to get down a slope somehow as my husband and I grew up skiing, too. Plus, I think she lives in Vermont, which is where I was born and raised.

And recently, I've met Hopeful Mother and About The Small Stuff, more twin mamas, raising one twin with a disability and one without.

I feel like I know these people, though I've never met them. And I can't imagine my life without them and their families and their stories. Thanks for being there.

My last thought of the night is: I don't really know who reads this blog. I have Google Analytics tracking on it, so I know some people find it. I hope they are parents and parents of a young baby who unfortunately has been recently diagnosed with PVL or CP and that they find some hope, courage and encouragement here. And that they meet these people I mentioned above, who have been so inspiring, open and supportive.

Good report card

2009-04-30T19:53:00.000-07:00

Yesterday, I finally received a copy of Drake's PT evaluation from December. Yes, it took CCS four months to send me a copy! But, I forgot to be annoyed when I re-read the 6-month goals they had set for Drake. By June, he would be able to get from sitting into a 4-point crawling position, 3 out of 5 times. Yeah... it's APRIL, and not only can he get from sitting into a 4-point crawling position EVERY TIME, he is CRAWLING on all fours now. And pulling to high kneeling, and sometimes even to standing! I felt like putting a gold star on his report and sticking it to the fridge!

Singing and signing

2009-04-26T22:39:00.000-07:00

Drake has been in speech therapy for a couple months now. His therapist comes on Thursday afternoons, which means I am at work, so I don't get to see what she does with him. My sister is with the twins that day, and she is great at filling me in on what they worked on and what we should continue to work on. Like singing. The therapist has been singing "Old MacDonald" with him, and now if you sing that song, he will do the "ei-ei-oooo" for every verse!

And she taught him the baby sign "more", to request "more" food when he eats. Drake is a very demanding eater, and will pretty much start fussing the second he gets in his high chair if there isn't food on his tray at that moment. She wanted to give him a way to communicate without fussing. This morning he finished his pancake and started to fuss, and I said "Do you want more?" and did the "more" sign, and he did it back!

Yay for speech therapy!

A typical day

2009-04-24T15:05:00.000-07:00

Now that Drake is crawling and pulling up to high kneeling on furniture, my legs, whatever, he suddenly seems like a typically developing kid. In fact, it is within the normative range to crawl at 17 months. I think the age range to walk is 9 - 18 months. I know he won't be walking at 18 months or 24 for that matter, but today he seemed like any late blooming baby. I took him to get fitted for his glasses (which by the way are going to be so cute. he looks like a baby hipster as they are thick and square), and he sat quietly on my lap while the eye doc measured him, then he got squirmy so I let him crawl around the floor. The eye doc (who knows nothing of his PVL or delays as the prescription was just for the glasses) was fussing over how cute he was. She kept watching him crawl around and pull up on things and saying "He'll be walking in no time!", etc. The fact is Drake looks so typical to look at him. If you saw him in a stroller, high chair, swing, whatever, you'd never think, here is a kid with CP. And now that he crawls so well, it's like he aged 10 months in a few weeks. A few weeks ago, he rolled like a 6 month old would. It's amazing how a single physical feat can "catch him up" so fast. I know we will back on the downslide when he doesn't walk in the next 6 months. But today, I am enjoying his relative age appropriateness!

The fertility post

2009-04-23T19:21:00.000-07:00

After trying to get pregnant unsuccessfully for two years, my husband and I went down the IVF route and got pregnant on our first try with the twins. Yes, I have gone down that dark, dark road where no one wants to wander where I wonder if I was ever meant to be pregnant. I have wondered if "forcing" it with IVF and subsequently having twins and my body not being able to hold the pregnancy past 30 weeks somehow makes me responsible for Drake's brain injury from being born 10 weeks too early. But I haven't had enough wine to really go there tonight, so I will move on...

We were able to freeze two embryos when we did IVF, and there they have sat, frozen in a lab in San Ramon, CA. I just got the "rent" letter for the embryo storage and my husband and I have decided it's time to donate them to research. In the back of my mind, since learning about Drake, I have sort of held on to the thought that we could keep them for 10 - 15 years and use their stem cells to help Drake, once stem cell research has become more researched and accepted. But the place will only keep them for 5 years and the stem cells aren't Drake's, they are some unborn sibling and I don't think that they will be able to help him. I think in the long run, they will help Drake, and countless other people, if we donate them to research now. But even though I know I will never go through IVF again (meaning using them for future children), it's hard to let them go.

That brings me to the other thought of the night. More kids. My doctors could never find out why we couldn't get pregnant naturally. So after the two years of trying like bunnies to no avail, and the IVF and the twins, BANG, I got pregnant naturally when they were 7 months old. Go figure. I subsequently lost that pregnancy to a miscarriage and was secretly relieved, as I was in no place to have a third child when my twins (one of whom had been diagnosed with PVL and his outcome so unknown) were little infants.

But now that they are 17 months and we have a better idea about where Drake is headed developmentally, the question of three has come up again. As I mentioned, I would never do IVF again, but if it were to happen naturally, and the pregnancy stuck, I think I would welcome it now.

I don't know about you other twin mama's, but do you ever feel that having twins is like a 1.5 in terms of pregnancy and not a 2? I feel like my babies are growing up so fast and I'll never get these baby moments again like I would if I was able to have a second child a couple years after the first. I feel like I'd be so relaxed with the next kid, having it not be my first. I feel like I'd definitely have a singleton, so that would be great, too. Maybe I could make it past 30 weeks! But I am also terrified of the dark thoughts I alluded to earlier. I don't want another pre-term baby.

Of course all this is completely hypothetical, as I don't know if we can have a successful pregnancy naturally. But the letter about the embryos and my best friend being pregnant naturally after 6 years of trying and two unsuccessful IVFs, makes me have baby on the brain.

Glasses!

2009-04-15T19:45:00.000-07:00

I took Drake to the pediatric opthamologist today because his pediatrician noticed at his last visit that he sometimes has a "lazy eye". I sort of notice it. It's very mild. I mostly notice it in pictures. I have seen some kids with CP wear patches over their good eye to strengthen the bad one. I sort of thought that an eye patch would be what the doctor would recommend. But no, he gave Drake a glasses prescription!

The doctor said he had a very mild "lazy eye" and that the glasses would correct it in one to two years. So, these are not permanent glasses. He said that he wouldn't attribute his PVL to the lazy eye, that lots of typical kids have it. I remembered that my little brother had a lazy eye, too, and wore a patch for a while. The good news is that the doctor said his optic nerves are perfect and sometimes the PVL incident causes damage to the optic nerves. So, we dodged that bullet!

Anyway, GLASSES! On my beautiful little boy! :) I know he will be so cute in them....

Drake's new feats - video

2009-04-12T15:53:00.000-07:00

My sister's boyfriend is here this weekend with his camera and I've taken it over to get some crawling, pulling up and general mischief video footage. Enjoy!

Moving towards "No, no"

2009-04-03T11:00:00.001-07:00

It seems yesterday Drake woke up and said to himself, "Today is the day I will crawl!" (for the record, he is 16.5 months adjusted). I put him down in the living room and when I came back in a few minutes later, he was gone. Yeah, he had crawled into his Auntie's room, about 15-20 feet away.

That was yesterday. Today, I can already see he is getting faster and more coordinated. His crawl is kind of like a modified bunny hop/shuffle, shuffle right now. My hubby has taken to calling him "Hop-Along D". But, he is figuring it out, getting that reciprocal movement in the legs. I am so proud of my little guy. He so badly wants to be where his sister is, follow her around, get in her business.

Which leads me to the next point...getting in trouble! So far, we haven't had to discipline Drake much, because he hasn't been able to do much that warrants it. But this morning, he bunny-crawled over to Lucy and promptly ripped the book she was 'reading' out of her hands. I scolded him and took away the book, like I do when Lucy steals toys from him. "No, no, Drake. We don't take books away from people when they are reading them. When Lucy is finished, you can read that book". I handed him a different book, but it was too late. He was hysterical. I don't think I'd ever said that to him before. I (happily) think I'll be saying it a lot more.

First time in a shopping cart

2009-03-29T16:53:00.000-07:00

I almost never go grocery shopping with the twins. I always go on weekends when my husband is home with them or on my way home from work. Before I went back to work, I'd sometimes be on a walk with them and swing by the store on our way home, but they'd be in their stroller. I couldn't for the life of me figure out how to grocery shop without a stroller when you have twin infants. There is only one seat in the cart! The whole point of this is a round-about way of saying that they've never really sat in a shopping cart! But today, I had to run out for some fish, and Drake was kind of fussy and seemed like he could use an outing, so my hubby and I divided and conquered and D and I headed out to Whole Foods. Drake loved sitting in the cart! He held on to the handlebar so he wouldn't tip to either side, but other than that, he sat there as straight as a needle, looking around, smiling at everyone. And it was fun for me, too, to have my little dude keep me company while on as boring a task as fish-shopping.

Random and unrelated

2009-03-26T19:34:00.000-07:00

Not so much to report, just wanted to let everyone know we are still alive and well, and I have been reading everyone's posts. I have been so busy at work, the days just fly by. And it's hard to admit, but part of the reason I have nothing to report is that I am not home with the kids very much anymore and therefore don't see all their little daily achievements.

But they are doing great. Drake is still trying to figure out this thing called crawling. He is so determined. It doesn't seem that he will army crawl, he wants to go right to quad crawling. He never tries to scoot on his stomach, he is all about pushing up to quad and rocking. He can do the arms great, and his right leg is good, too, it's the left leg that isn't sure when to move forward.

I want to take a video, but I lost my camera last weekend. I've been losing things like crazy the past few weeks. Saint Anthony is NOT on my side.

We did take the twins to a petting farm last weekend. Lucy loved feeding the animals pieces of celery. Drake was pretty frightened of the animals, especially the cow, and especially when the cow got right up in his program.

We are going to take Drake to the eye doctor in a couple weeks to see what he thinks of his "lazy" eye. It's barely noticeable, but his right eye doesn't always look straight at you. I am assuming they will give him a patch?

Both twins went for their 18 month well baby and shots last week. Drake is 24 lbs and 32 inches. Lucy is 18 lbs and 29 inches. She was pleased with everything about them and they don't go back until they are 2! I don't think we've gone 6 months without any doctor appointments in a while!

I have also signed Drake up for swimming this summer. It's a program for kids with motor issues and I think he is going to love it.

Built-in best friend

2009-03-15T11:09:00.000-07:00

The twins are supposed to be napping, but I keep hearing loud peals of laughter coming from their room. First one, then the other, then together. I can't resist, I have to see what they are up to.

I crack their door open an inch and peek in. Lucy is standing at the far end of her crib that faces Drake's, jumping up and down. Drake is laying on his stomach, but has pushed his bumper down so he can see Lucy. I watch a minute longer and see that Drake is playing a "peek-a-boo" game with the bumper. He lets it go so it pops back up, then pushes it down again. Roars of laughter from each.

Raising twins is no easy task, but every difficult minute has vanished in this moment. They are so lucky to have each other.

Another first

2009-03-13T14:58:00.000-07:00

Drake is working so hard to crawl. He can get himself from his stomach up onto his hands and knees, and then he just rocks back and forth. When he tries to actually crawl, it's more of a lunge forward that ends up with him back on his stomach. However, if you move his legs for him, he will move his arms to crawl forward and can "crawl" for several feet that way.

Last night when I put him in his crib, he immediately rolled to his stomach and pushed up onto all fours. I left the room to get Lucy and when I came back in, he was on his knees, holding onto the rail of the crib, and smiling the most pleased-with-himself smile! You could have blown me over with a feather. I have never seen him pull up to his knees before. It wasn't perfect, he hadn't quite figured out how to walk his knees in towards the rail, so he was kind of sagging in the middle, but he had figured out a way to reach up and grab the rail and pull himself up!

Another feat I am hoping to see a lot more of!

Gross Motor Function Classification System for CP

2009-03-01T18:42:00.000-08:00

A woman I met on the site Twinstuff (a great support site for anyone with twins) sent me this link after she read my latest post about not knowing what "mild" means when it comes to CP.

http://www.canchild.ca/Portals/0/outcomes/pdf/GMFCS.pdf

She lives in Canada with her twin boys, one of whom was recently diagnosed with CP. I know every child is different and when children are young it is especially hard to say what their future looks like, but I was eating this up.

Anyway, I hadn't seen levels of severity of CP classified like this before and thought I'd share...

Out of the mouths of doctors

2009-02-25T19:36:00.000-08:00

Lots of thoughts in my noggin tonight. Today Drake had "clinic" at CCS (where he receives his therapies). I guess they occur every 6 months and since Drake just hit his 6-month mark at CCS, it was time. The clinic involved meeting with a doctor and all his therapists to go over his progress and see if he needs any medical devices to be ordered or whatnot. The doctor was nice, although I got the sense early on that maybe she wasn't all that clued in. For example, when we were going over Drake's medical history and I told her Drake had been diagnosed with PVL, she asked what that was. What? She is an older doctor who advises for a state service that supports kids with physical disorders.

Anyway...

She looked at Drake, got him down to his diaper, and did her evaluations. At the end she said, "This kid is doing great! You know, some preemies outgrown their physical delays and are all caught up by age 3. Drake may be one of those kids." So I said, "Well, that's fabulous to hear, but my husband and I are fairly certain he will have a CP diagnosis by age 3." And we think this because even though he is making great progress, he still has a brain injury and is still very delayed and has neurological signs of CP, like mixed tone, etc. jShe replied, "Maybe, maybe not. And if he does, it would be a very mild case of CP, I would think."

We should be out celebrating that a doctor has said this to us. But it felt so far removed from what his other doctors have said, that I felt cheated by the good news. His other doctors agree that if Drake were diagnosed with CP, it would most likely be mild (though we don't know what mild means), but not that he is going to "outgrow" his delays from PVL and be like any other kid. Doctors need to be careful what they say to parents. My sister was at the appointment and she called my parents to tell them the news afterwards. Then they called me, all excited that they heard Drake isn't going to have CP.

Urgh. It's so hard to be on the roller coaster. And I know it doesn't matter in the long run. Whether this doctor thinks he will have CP or not doesn't change him in any way. He will do what he is going to do regardless of a diagnosis.

But again, doctors need to be careful what they say and mindful of whose hopes they lift and crush.

Mix Master Drake

2009-02-22T11:20:00.000-08:00

Drake got the Leap Frog Music Table for Christmas. It's probably his favorite toy. The model we got doesn't have legs that come off (so if you want to buy this, check to make sure you get the one with detachable legs). Drake can sit on the ground in front of it to play, but it's still a little high for him. So, we put him on this little footstool we have and now he is the perfect height for it. His balance is getting really good as he can sit on the stool for a long time. I have my sister's biology text book under his feet so they are grounded.

I have a really cute video of him playing with the music table, but stupid Blogger keeps rejecting it, even though it meets all their uploading requirements.

Tumble

2009-02-18T19:58:00.001-08:00

Today, while my sister was watching the kids, Drake fell off her bed and onto the hard wood floor. She was upset and scared to tell me that it had happened on her clock. She said, "I left him for 10 seconds and he was in the middle of the bed. He just rolled himself off. I didn't think he could roll like that on a soft mattress."

He is fine and so I am left actually feeling happy that he is such a mover and shaker these days, he actually took a tumble!

Spreading the sickness

2009-02-17T19:23:00.000-08:00

Saturday we went to a friend's kid's first birthday party. When we got there, the kid was taking a nap, so the twins and the other babies at the party were playing with each other and with the birthday boy's toys. All is fine and dandy. Then, the kid wakes up and comes into the living room. I go in for a birthday hug and see a face covered in snot with two huge, green "snail trails" coming out of his nose. His left eye is red and oozing green gunk, too. I say to his mom, "Is Felix sick?". She replies, "Yes, and he has pink eye, too!".

I spent the rest of the party trying to get the twins to play with the toys we brought and trying to sanitize their hands when the hostess wasn't looking. Who doesn't cancel a party when they have a sick, contagious kid?!

And of course, today, Drake woke up with a red, weeping eye and runny nose. Good times.

Speech evaluation

2009-02-15T11:20:00.001-08:00

Drake's speech evaluation went well (I heard) as I couldn't get away from work to be there. I was told she put 3 things on the table -- a doll, a ball, and a bottle -- told him what they were, and asked him to pick up the correct object when asked. He could only identify the bottle. That makes sense, as we don't have any balls and we only have one doll, which neither twin plays with. She asked if he points at things (no), can correctly identify facial features (no), hands things to you when he is "done" playing with them (no). She did like his range of vocalization and that he has two real words --"Uh-oh" and "Hi". He also waves "bye-bye" and will clap on command. So there is some expressive and receptive language going on. She also wanted to watch him eat and drink. She didn't give us a report on her findings, but she will be seeing him once a week starting in two weeks. Another appointment to add to the weekly calendar!

Talking points

2009-02-11T19:34:00.001-08:00

Not so much to report these days. I have been so busy with my new job, there hardly seems time to sit back and reflect on what's been on my mind. Drake is getting a speech evaluation tomorrow. I, once again, have no idea what to expect. I assume she will try to get him to make a variety of sounds and peg him at an age for expressive and receptive language? I will be curious to see what she thinks of his sounds and what age she places him. I don't think he is too far behind in language. He makes lots of sounds and babbles and blows bubbles and imitates simple things like "Uh-oh". I often can't tell if Lucy or Drake is making noise when I hear them from the other room. Of course, I don't know what his sounds and babbling mean for his speech down the road. Like everything related to Drake, I am sure we won't know. And I am sure when I ask the speech therapist if she thinks he will have solid speech patterns, she will say "I don't know, we have to wait and see." Getting a little tired of the "wait and see", but at the same time, I think Drake has surprised us with what he can do and speech I am hoping will be no different.

New therapies?

2009-02-03T16:18:00.000-08:00

I have been thinking of additional therapies for Drake and wondered if people out there could tell me which they really loved and really made an impact?

I don't think we can do ABR due to the logistics of that one, but I have been inspired reading success stories of those who do ABR.

I am most interested in the Anat Baniel method and HBOT. Also, craniosacral therapy. Anyone with experience in those? Any others I may not know about?

Inspiration

2009-01-25T16:00:00.001-08:00

Today is my husband's birthday and to celebrate we took the kids to the new California Academy of Sciences Museum in San Francisco. It was great, though it was also a complete madhouse. Anyway, as we wound our way around the aquarium, we passed a woman helping her young daughter navigate through the crowds in her reverse walker. I couldn't help myself, I stared.

I have never seen a kid in a walker out in public. Never. I don't know why. I just haven't. And since having Drake, I've thought about it a lot. Why haven't I seen a parent with a child in a walker at the grocery store? At the park? Walking around the neighborhood? I've really started to question it. Because I know when Drake gets his walker, he is going to be taking it to the park, the grocery store, and on walks down our street. Because that is where I am going to be and where Lucy will be, too.

I have read posts from other parents who talk about the hard work of getting a kid in and out of a walker, of carrying the walker AND the kid, of the emotional drain of other people's stares and questions. I wonder if these things have made the parents of children with special needs in my neighborhood stay home.

But today, seeing that mother carve a path through the crowds so her child could walk up to see the fish made my day. And she didn't even seem too worse for wear for it either!

Lucy walks!

2009-01-24T10:02:00.000-08:00

Making great strides

2009-01-22T19:57:00.000-08:00

We had a great appointment with Drake's developmental pediatrician today. She saw him for his 15-month (adjusted) check-up. Most kids go every 6 months, but at his 12-month appointment, she asked to see him again in 3 months. He has progressed a lot in the past 3 months as I have mentioned before. It seems to me that at about 12-months, something clicked and he started to do a lot more. The doctor noticed this, too, and was so pleased with all the things he is doing.

First off, she said his tone was great, so relaxed in the legs, hips, and ankles. She didn't see any reason why he would need AFOs at this point since he has such good range of motion in the ankles and she is confident he will quad crawl in the next 6 months or so (!) and doesn't want his feet to be braced when he crawls. My heart squeezed hearing this. He is making attempts to crawl now (when he is on his stomach he kicks his legs like he is crawling, but without them being under him), but it's hard to imagine him actually crawling.

She loved his sitting and that he can transition from sitting to quad to rolling. He did great on all the cognitive games, too, looking for the duck under a blanket, playing peek a boo, pulling the string to get the ring, clapping on command, and mimicking me when I said "Uh oh" (his favorite thing to mimic). She is going to put in a request for speech therapy now, even though our state's program usually makes you wait until 18 months, because he is doing so well verbally.

AND she doesn't want to see us again for 10 months! YAY! I am so proud of Drake and my family for all the hard work.

Tired

2009-01-16T19:42:00.001-08:00

Whew! It's Friday again and I am completely gassed! It's only been two weeks of being back to work and I feel like it's been two decades! I am giving huge props to all the mothers out there who also work full-time. I feel so blessed to have a nanny that comes to our house at 8 am each day. I hand off the twins to shower and get ready for work while she feeds them breakfast and gets them dressed. I can't even imagine trying to get everyone dressed, fed, and out the door by 8 to get to daycare.

I think I am especially tired since night-time sleep has been a challenge recently. I have always bragged (maybe too much, as payback is a bitch) about how sleep is the twins' superpower. They both started sleeping through the night at 9 weeks old. And by sleeping through the night, I mean 12 hours -- 6:30 to 6:30. It's been fabulous. However, the past month or so, someone has been waking up crying at various times during the night. The crying is usually brief, but it wakes me up and then I can't go back to sleep. I have been letting them cry, even when it goes on for 15 minutes or more, because what am I going to do? I am certainly not going to get them up to play. I check to make sure they are not sick, wet, or stuck, and if all 3 check out, I go back to bed and put a pillow over my head.

They are getting their 1-year molars. Lucy has all 4 in and Drake is cutting his last one on the bottom. I think that may be why they are waking up. They also seem like they are ready to go from 2 naps to 1. They aren't really napping during their morning nap anymore. So I think they may be over-tired, too. We have just started moving the morning nap 15 minutes later each day, trying to get them to ease into a single early afternoon nap. We'll see how that goes.

But, otherwise, the kids seem to be adjusting to me being gone all day just fine. I don't know whether to feel happy or sad about that! My sister brought them downtown today to meet me for lunch. That was fun and a treat to see them in the middle of the day. We are going to try to do that once a week.

TGIF

2009-01-09T23:00:00.000-08:00

Not really sure what to post about, but lots on my mind. I started my new job on Monday. I am completely wiped out from my first week of full-time work. I have been shaking the dust bunnies out of my brain. But, it's been good. I enjoy the people, the work, and the challenge.

The twins have been home with Auntie Hil all week. She has been taking to take Drake to CCS and his other PT/OT appointments. They will be with her 5 days a week for the next 2 weeks, then Hil's classes start and she drops back down to 3 days a week. We just hired a new nanny for the 2 days that Hil has classes. I think we got lucky. I went to Craigslist, found someone who seemed good, interviewed her, and subsequently hired her. She is a young, hippie-type woman, who brings love and organic cooking. Of course, organic cooking isn't a requirement of mine, but why not?! She is also a certified pre-school teacher, has training in massage, and is interested in alternative wellness and therapies. She is very keen on working with Drake and I think she will do even more with him than we do, as she is fresh blood!

Drake just found his mode of mobility last month; rolling! He rolls like crazy now, all over the house. It feels like we worked on rolling for an eternity. First to get him to roll front to back, then back to front, then to link rolls like he does now. He uses his legs to initiate his rolls, which his PT likes. He pulls them up, then moves them to the side. He doesn't use extension to roll, which I have been told can sometimes pose later problems.

At the same time, Drake seems to have plateaued in some areas after a huge progress spurt. He doesn't want to sit anymore, all he wants to do is stretch forward out of sitting and roll! His PT thinks he is just so excited to have found a way to get around, that sitting isn't his priority right now. That makes sense to me, but we are still trying to get him to stay in sitting to strengthen his back, etc. It's hard to do that right now!

Lucy is soooo close to walking! She will let go of furniture for a couple seconds and stand there. Then she realizes she is standing and freaks out and falls. She will take one or two steps unassisted if you hold your arms out to her. I can't believe my little peanut girl is about to walk! I sense a whole new set of challenges coming my way!

Socks suck!

2009-01-04T09:39:00.000-08:00

Things have been crazy over here in Oakland. I got offered a full-time job right before the holidays and am starting it tomorrow! I have been searching for the word to explain how I feel. I don't think there is just one. I am excited. I am conflicted. I am heart-broken. I am worried.

I have been home with the twins full-time since July. I will miss them terribly. I was looking at a calendar and counting the days per month I will be with them. 8! Maybe 10 if there are 4 weekends in a month. That is like a third of a year! I am consoled by the fact that they will be with their amazing Auntie Hil 3 days a week. I am in the process of interviewing for another nanny 2 days a week. And I have put them on a wait-list for daycare (a fabulous daycare that takes special needs and typically developing children) because I am thinking of starting them in daycare in June. There are crazy changes ahead, people!

Speaking of crazy changes, Drake has been progressing so well the past 2 months. Tomorrow he is 14 months corrected age. It seems like right around his 1 year birthday, things really started to click for him. First off, he is so much more verbal. He is very involved in oral play, making sounds and blowing raspberries, playing with inflection, etc. There are times I can't tell which twin is "talking" anymore, they are so similar in their range and frequency of babbling.

He has also finally found his feet! I have been using a game I have coined "Socks Suck!" (though I don't call it that to him) to get him to lift his legs to grab his feet and take off his socks. He loves it and is so pleased when he gets a sock off. He claps for himself, as evidenced in this video.

This video was taken a couple weeks ago. Now he barely keeps his socks on, grabs his bare feet and tries to nibble his toes.

Holiday pics!

2008-12-23T13:43:00.000-08:00

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

2008-12-17T19:33:00.000-08:00

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

2008-12-10T19:24:00.000-08:00

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

2008-12-07T10:10:00.000-08:00

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

2008-12-02T19:31:00.000-08:00

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

2008-12-01T14:25:00.000-08:00

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?

2008-11-30T09:06:00.001-08:00

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

2008-11-29T10:39:00.001-08:00

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

2008-11-23T09:00:00.000-08:00

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

2008-11-21T11:51:00.000-08:00

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

2008-11-21T11:31:00.001-08:00

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

2008-11-20T19:22:00.000-08:00

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

2008-11-19T19:22:00.000-08:00

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

2008-11-18T08:21:00.000-08:00

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

2008-11-17T09:19:00.000-08:00

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...

2008-11-16T11:49:00.001-08:00

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

2008-11-15T09:46:00.000-08:00

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

2008-11-14T10:35:00.001-08:00

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

2008-11-13T13:26:00.000-08:00

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

2008-11-13T09:33:00.000-08:00

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.