New Pics + Prematurity Awareness Month

Since November is Prematurity Awareness Month and this Sunday, the 17th is World Prematurity Day, I thought that was a good reason to update the blog!  Every year 15 million babies are born too soon worldwide.  Unfortunately Anthony and Aryanna are part of that statistic, but we're so grateful for the amazing care they've had along the way and all the progress they continue to make on a daily basis.

The twins are almost 18 months now and this is what they've been up to:

Helmet:
Anthony was officially done with his helmet (which was reshaping his head) back in September.  He ended up not needing to wear it as long as we originally thought and his head looks so much better.  He was such a trooper about it, too.  He's so easy going!

MRI:
Anthony had an MRI several months ago.  The neurologist ordered one so we'd have a baseline for future reference.  We got to see it this summer, and I don't think I ever wrote about it on here.  I wish you all could see it, so you could see what a miracle God continues to work in our little boy - it was absolutely astonishing!  Anthony had a grade IV (the most severe) brain bleed on the left side of his brain shortly after birth and a grade III on the right side.  Due to the bleeding and the resulting hydrocephalus (swelling) there is an enormous area on the left side of his brain where there is a lot of damage.  I could not believe what I was seeing when the neurologist showed us.  His brain is there, but kind of pushed to the side.  He said the area of his brain most affected was the area responsible for gross motor skills (which makes sense because the right side of his body is much weaker).  I left that day with a few thoughts running through my head: 1) I was grateful that I hadn't seen that MRI sooner.  I don't think I would have had as much faith about what Anthony could accomplish if I had seen that sooner, 2) I was so amazed with and proud of Anthony for how much progress he has made.  Seriously, he's my hero.  Along with that, I know that it is ultimately God who has brought Anthony this far - he gave him his determined spirit and he continues to do a mighty healing work in our boy, 3) It reminded me just how important physical therapy and occupational therapy are for Anthony.  Their brains are just so resilient when they're little and able to compensate for so much.  I'm amazed at how much therapy can help create those pathways in the brain from the "outside in."  Definitely a worthwhile investment of our time (2 to 3 times a week).

Mobility:
Aryanna is walking, running, climbing and dancing all over the place.  That girl is ALWAYS on the move.  She is so much fun to watch, especially when she's dancing - not even sure where she comes up with some of her moves!  She carries around her little keyboard (thanks, Jane!) that plays a bunch of different songs.  She changes the song when she wants a different beat and changes her rhythm to match the song!
Anthony is on the move, too!  From the time Anthony had his brain bleed, various people told us he may never be able crawl, especially with his right-sided weakness.  Well, he proved them all wrong and has been army crawling for about a month!  Using his right arm to crawl has strengthened that arm and he's been using it so much more as well!  He also likes to walk with us holding his hands and the AEA brought us a pony walker for him to start practicing walking in.  He takes steps with his right foot when he's using it.  They said that's a great sign that he doesn't drag his weaker leg.  I even overheard them talking to each other on their way out saying "He's going to be a walker."  We of course believe that, but it was nice to hear their faith in him, too.

Eating:
We're making some progress here, sloooooow progress, but progress nonetheless.  The twins drink Pediasure as their main source of calories and nutrients, but we're gradually adding foods that they are able to tolerate without gagging, puking, etc.  Anthony loves to eat, but often bites off more than he can chew (literally!)  Weight gain is still slow - neither of them has hit the 20 lb. mark yet, but they're continuing along their own growth curves so the pediatrician isn't concerned.  Anthony's Occupational Therapist does feeding therapy too and Aryanna is having a feeding evaluation on the 25th to see about getting her in feeding therapy as well.

RSV Lockdown:
RSV is respiratory virus that most kids get by the time they're 2.  In most cases it acts like a cold, but for kids like ours with Chronic Lung Disease, it can easily land them back in the intensive care unit.  The twins are both receiving Synagis shots (after a battle with the insurance company when Aryanna was approved and Anthony wasn't) every month to help protect them should they get RSV.  Per our pediatrician's recommendations we're avoiding most public places with the twins again this winter, so if you haven't seen them at church lately, that's why.  It's a little harder this winter after having them out and about with us all summer, but worth it to keep them healthy!


Here are some pictures we took last weekend on a beautiful fall day!