Tuesday, April 12, 2011

Conductive Education hopeful

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! :)

Friday, March 11, 2011

Mental milestone

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.

Thursday, December 30, 2010

First school pictures and conference

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.

Thursday, November 11, 2010

Baby on board

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.

Thursday, October 14, 2010

Red boot

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!

Sunday, October 3, 2010

Walking videos (featuring the SWASH)

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.

Tuesday, September 14, 2010


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.