Tuesday, August 17, 2010

Benjamin update

It's been awhile since I've updated anything about how my sweet Benjamin is doing. Here are the highlights in boring form:
  • We are no longer having to thicken his liquids. Yay!
  • He is still drinking Pediasure instead of milk.
  • Because of that, we are still trying to figure out the perfect Miralax dosage, meaning he's either constipated or having blowouts. We're working on it, though. To help combat the messiness, he almost always wears Gerber Waterproof Pants (size 12 months) over his diapers. He sounds like a walking garbage bag, but it helps.
  • We have recently weaned him off his Prevacid, but if his reflux seems to worsen, we'll go back to 15 mg a day.
  • As far as therapies go, he gets ST (speech therapy) twice a month for an hour and OT (occupational therapy, were we work on fine motor skills, such as feeding himself w a spoon) once a month for an hour. The therapists come to our house, which is wonderful! And....drumroll......he has been discharged from PT (physical therapy)!! YAY! He walks and runs and doesn't really need any gross motor help.
  • He will turn three on April 24, which is a Sunday. When EI (early intervention) children turn three, they are "turned over" to the state by the EI team (ours is BCW, Babies Can't Wait). Which means that the day after he turns three, on April 25, 2011, Benjamin will start school. There is a primary school right down the road from our house (Battlefield Primary for you local peeps) where he will attend school. He will go for five weeks starting in April and then get out for summer break. Then in the fall, the same day Andrew starts full-time kindergarten, Benjamin will go back to special ed preschool. When he's three, he will go Monday through Thursday, 8:00--11:00. The next school year, when he's four, he'll go Monday through Thursday, 11:00--2:00. (Times are approximate.) The best part? He can ride the bus. He will love it, and so will I!
  • Health-wise, Benjamin is doing well. He went back to the BEST cardiologist EVER, Dr. Herold, last week. It was the first time he'd been in a year. And he got a good report. Dr. Herold (did I mention he's the best?) said B's chest x-ray looked better than it ever has. (And that is after we'd taken him off the Thick-It, so that's reassuring!) Some time before he's four, B has to have an ECHO and an EKG. He will have to be sedated for these b/c there is no WAY he would hold still for long enough. He still has a pulmonary heart murmur, but that's understandable b/c of his open-heart surgery. It is of no concern at this time. We're coming up soon on October 3, which will be the two-year anniversary of his surgery. Wow.
  • He is getting better at entertaining himself and playing with toys.
  • He sometimes will bring you something if you ask.
  • He loves to throw himself onto stacked up pillows on my bed, or onto my mom's leather chair.
  • Still no words. Only a few signs, and only when prompted and we model it. He will mimic actions but not sounds/words. This has been the hardest part for me. He basically does not communicate with us, and that is tough. He is almost 2 1/2. Yet still so much like a baby.
And now a few pictures. It is so hard to decide which ones to choose! I have lots more of B with his brothers, but I'm saving those for another post. This one's alllll about B.

He loves the air vent!

Puzzle time!

He can do them all but gets tricked up with the oval.

He's a busy guy; he has to groom on-the-go.

His latest is climbing in and out of the kitchen chairs.
He also likes to play the back rungs like a xylophone.

Seriously, both my older boys have fallen back in love with the Bumbo.

That's all for Benjamin! Stay tuned for Andrew and Thomas updates. :)


Kara said...

WTG Benjamin, you're doing so great!

He's so cute, Angela. My kids still love the Bumbo too. So silly. And I love the vent pic, we sit by the vent at Church so we can feel the nice air.

JILL said...

It's hard to believe he'll be heading to school in ~6 months! I know for me, the switch from our EI agency to the school district was a positive one! Now, I stop and realize that in one year, I have to say goodbye to our therapists as we send Carl to kindergarten. I'm going to be a wreck!

I love the puzzle pictures! And that is so wonderful that he'll bring you things you ask for!!! The language must be so frustrating, or heartbreaking for you. xoxox

BLOOM - Parenting Kids With Disabilities said...

He is becoming such a little boy (in actions and appearance)! I love the new tagline to your blog. Cheers

Ginger said...

Love the pics! B is so cute and it sounds like he's doing great... good news about the heart check up. I just love him!

Mel said...

Super cuteness! I have just finished the Hanen "It takes two to talk" programme for parents, and would recommend it for communication. The best part is most of it builds on what you already naturally do, and is so simple but effective. Just by changing a few little things like slowing down my speech and repeating the key word I want Luke to learn at least 5 times in an interaction, he is talking heaps more. Google it and see if you can find a course or at least buy the book. Definitely helpful :)

Your boy is a star, by the way.

Shannon said...

what a love bug! so cute!

mason started speech w/ our town the week he turned 3 and still qualifies for it 2x a week, but with our schedule, i am thinking once might have to do. oh how i miss the days they came to our house.

Laura said...

He is so sweet!! So wonderful that you don't have to thicken his drink anymore and his x-ray looked good!