Down Syndrome: Low Muscle Tone

 Low muscle tone is the culprit for most of Roman's struggles.  Constipation, gross and fine motor skills, sucking and swallowing, reflux, and even smiling with his cheeks.  (These pictures and milestones are from December.)

Roman made the NDSAN Instagram post of adopted kids.  He's the last one on the second row.

Lifting that head!!!

Almost rolling!

Christmas Light Looking

This year's traditional Christmas light looking looked a little different.  We drove a ways away with some friends  to get out at two different places and walk through the lights.  We still packed our home-made hot chocolate in a large thermos.  Roman was a trooper except for not taking his bottle, but that is typical when we leave the house.

My twinsies!  They are so similar!

 

St. Nicholas Day

The big kids had this day off of school!  We ended up celebrating Drew's very belated birthday dinner at a chicken and waffle place, Gold Feather.  You may recall that his birthday was the day Brian and I flew out to get Roman and things have been so busy that we just kept putting it off, but we finally had a spare evening!

Everyone got matching PJ's and various types of gingerbread houses this year.

Bob was so thankful for a squishy ball he had been wanting.

Nobody noticed the Light Up Corn Hole set until Dad pointed it out.

Although I am still working on sewing Roman's incomplete stocking, he did get two little toys for St. Nicholas Day. 

 

Roman Noodles

These pictures are from church at the Mission of Divine Mercy where we go once a month on Sundays.  There is a nun there that prays for Roman and when I was discussing with her my fear of seeing his scar after the heart surgery, she said something that has been of great comfort to me.  She said, "I have a feeling that scar is going to be a sign of success."

This is mainly what we do, bottles!  All the time!

He was eating much better after the hospital stay, but two weeks later he got his vaccinations and that set us back quite a bit.  He really doesn't do well with the vaccines.  He gets fussy, feverish, and reduced appetite for days.  He was a mess for a week after these four vaccines.  This was the second time that that happened, both at 2 month and 4 month check up, and so next time we are going to spread them out more to see if that helps.

The kids loved when I started styling his hair up after a bath.  All I have to do is brush it back and let it dry that way and he gets this adorable little curl on the top of his head.  The rest of his hair is so short, but this one small chunk is long.

After that hospital stay, everyone was so happy to have him back home that he got quite spoiled, needing someone to be entertaining him constantly.  Good thing we have a lot of entertainers around here!  He's a very social guy!

His occupational therapist and his specialized training therapist help him make great strides towards rolling and hold his head up.  

We have to swaddle him in this sack to feed him a bottle because it helps to organize him and focus his energy on eating.  He has to eat on his side and have a thickener in his formula to help him not choke or aspirate.

When Genevieve walks in the door, she goes straight for her Roman cuddles!

Tummy Time with Luna

Luna is feeling so neglected that she photo bombs us now.

You can see Drew's new hair cut here.  He wanted to go shorter, but not quite this short.  He has been wearing a hood as much as he can get away with ever since.  I think it looks nice, but his daddy is not a fan.

Showing off his growing belly!

First walk in the stroller where he could look around and enjoy the view (i.e. not in the infant seat facing the sky).

Another Bazaar

Before we got Roman, I had signed up to have a table at the church bazaar in December.  Mainly, I needed to try and sell my St. Padre Pio t-shirts as a fundraiser for our adoption, but I also had some seasonal items printed up from my shop.  Genevieve had also agreed to try and sell her hand-lettered/watercolor cards with me.  I tried to keep it simple since Roman had come into our lives and required all the time that used to go towards creating and crafting for my shop.  

My sister lent us the tent and a friend lent us the long table.  You can't see my banner, but it turned out nice.

You can see all the t-shirts here.  I had to buy them in bulk to be able to use this local business here that does excellent printing work on super soft shirts.  So, if you would like one please contact me as I still have them in many adult sizes!  I haven't yet listed them on Etsy.

I had painted a Fatima set that sold and then had return customers come back to try to buy it.  I think the peg dolls are always popular.

Genevieve's cards

We managed to snag a family picture before we left for the day.  The boys were all in their Troops of St. George shirts because they helped their dad out at the Troops table during the festival.  Bobby is now in Troops, but hadn't gotten his uniform at this time.  Two blessed nights a month and an occasional weekend get very quiet at our house when just the girls and Roman are home with me during Troops events.