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.

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.

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.

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!

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.

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.