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

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.

Tuesday, August 17, 2010

Botox day

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.

Friday, July 30, 2010

IEP Day

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!

Monday, July 12, 2010

Big month

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... :)

Tuesday, May 25, 2010

Open cup

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

video

Friday, May 14, 2010

Good ears and teeth

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!

Tuesday, May 11, 2010

This and that

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.

Wednesday, April 14, 2010

B is for Botox

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.

Thursday, April 8, 2010

Good things

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".

Sunday, February 21, 2010

Sledding!

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.

video

Monday, February 8, 2010

Evals and Preschools

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.

Wednesday, January 13, 2010

Lucifer

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.

Saturday, January 9, 2010

Potty practice



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.

Thursday, January 7, 2010

Off the couch

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.

Sunday, January 3, 2010

Resolutions

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!