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.

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.

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!

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... :)

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

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!

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.