Wednesday, April 17, 2013

Two Months Home

I am asked daily how Bogdan is doing and if he is settling into our family. He has been home two months.

I'm so happy to report that he is doing very well. We have made it through about half our medical to-do list and we have heard only good news. There are no palate issues; he is showing only minor hearing loss which is probably related to wax build-up; he is aspirating thin liquids but we already knew that and were thickening all fluids anyway; he is doing so much better with feeding; the surgery for his syndactyly should not be difficult; all of his labs came back normal... with the exception of one.

Shawn was at our pediatrician's office with another child when I asked him to request Bo's lab results. A few minutes later, I got a text from him. Here's the exchange:

Shawn: Got the results. Are you sitting down? 
Me: What?
Shawn: He has....................Down syndrome.
Me: OMG!!!

We think we're hilarious.

He just had an echo-cardiogram and will have a sleep study before the month is out. He will see the cardiologist early next month.

Beyond all that, he fits well in our family. He's quickly becoming one of the bunch. The other kids just love him and even Eon is sitting on him less and playing with him more.

I have mentioned to a few people that he seems almost cat-like in his affections. He will share affection only on his terms. Some days, I come home from work to smiles and snuggles. Some days, he ignores me when I greet him, busy with his cars, making the other days that much sweeter. 

His lack of communication is becoming an issue. He uses "dada" appropriately and has been heard saying "mama," as well. Beyond that, he pushes people away if he wants space, pushes food away if he doesn't care for it, pushes medicine away if it is coming too close, etc. 

See a theme? Pushing away is his primary form of communication. Sometimes, like right at this very moment, he cries. Usually, we have no clue why. Nor do we know how to comfort him. I'm not sure if he's grieving or just deciding he's hungry. We've introduced signing, but imitation is not his strong suit. (edited to add: Apparently, this time it was due to sleepiness. He slumped over on Shawn's lap soon after I wrote that.)

We have a long way to go.

He is stimming much less. He used to rock himself to sleep every night holding his stuffed cow. Most nights, he just holds his cow, lays over, and falls asleep. He only rolls his tongue or plays with his pinkie when he's nervous, so we almost never see that behavior at home, either, which is fantastic and shows us that he is feeling secure in his new home.

He does need space frequently. He will play and laugh and interact with us for awhile and then will go off to play cars by himself. We don't mind and we encourage the other kids to give him time to regroup. He needs that to adjust.

Bo loves to undress and has one hand almost permanently stuck in the back of his diaper. Sigh. Zippered pajamas were our solution while it was cold, but I see lots of onesies for his summer attire. Shawn informs me that he kept his clothes on all day today, however, so maybe we're making progress.

Our lives feel like chaos much of the time, very reminiscent of postpartum periods after the other kids joined our family. We're all looking for the new normal and sometimes we actually catch a glimpse of it now and then.

Baby steps.





2 comments:

  1. I'm so glad things are going well. Can't wait to meet him...and YOU for that matter! :)

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    Replies
    1. Me,TOO! I think Lily and Eon are going to be great friends! They can play and not talk to each other. ;)

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