livingwithevan.com | 3 weeks until we have a 2-year old

3 weeks until we have a 2-year old

Posted on July 1, 2013 by Sarah 5 Comments

Has it really been since we just got home from surgery since we last posted? Well, that’s embarrassing. I guess you can expect to have lots of photos in this update. We’ve had some pretty rad developments since then.

First, and most importantly, we had a follow-up appointment with the cardiologist and she said everything was looking great. In fact, she thought his heart function had improved a little bit. She is still keeping him on all of his meds. Being on meds is a double-edged sword… you appreciate their helpfulness but you can have side-effects. I wonder if some of Evan’s continuing feeding issues aren’t the result of some drug side effects. Can’t wait for the day we are drug free.

Second, his g-tube site was looking a little sketchy for a bit but now I think it has settled nicely. We were to keep it in place for 2 weeks and then it can get turned and submerged yadda yadda. But Cincy suggested to just keep it still and don’t turn it at all. I was, and still am, concerned that the interior components will heal to his stomach lining by not moving it. Don’t you have to turn earrings when you get your ears pierced? I know, completely different. So we entrust those who really know what they are talking about and things have been going well.

Third, we had a follow-up with the dentist and Evan behaved so brilliantly. Adults could be schooled by him. There doesn’t appear to be any new damage to his teeth so that is a great thing. They confirmed his molars were coming in. Yippee.

Eating is always a challenge. We met with the dietitian and she changed his plan so he is milk-fed only 4 times a day instead of 6 times a day, so that helps. He still gets the vast majority of his nutrition from formula. He will consistently eat Stage 1 or 2 food, so that is much better than nothing. He doesn’t seem to be too picky as far as flavor goes – it’s all about the texture for him. We are routinely eating food so we incorporated that into his daily calorie intake. We are partly-food dependent! So that is very cool.

Evan is speaking more! During his cardio appt he was having an Echo done and was watching Dora. He watches Dora at Nana’s and Dora asked “how do we know where to go” and Evan said Mah! I thought it was for mom. Then Dora said, “That’s right… Map!” He said Map! Then she asked “where can i look for something” and as clear as day he said Backpack. This stinker can say a word like backpack?!? Now we say Map and Backpack quite frequently (no Dora tho). He tries saying lots of stuff and mostly he just gets the correct # of syllables but it’s something! Just right now be said ba-ba when he heard bubbles. He makes a number of animal sounds thanks to Ms. Cathleen. Instead of signing dog he makes a whimpery bark. For monkey he both signs and makes a ahh-ahh-ahh monkey sound.

The most spectacular thing he has said happened the other day. I was wearing a “Boston Strong” t-shirt and was holding Ev. He pointed to the O on my shirt and said Oh! Completely unprompted. It was awesome. I asked him what letter made a ta sound and he pointed to the T. Heh. This kid. What stroke???

He is still a very happy, kind, obedient boy. And I can’t believe we are already planing his 2nd birthday party! It is a Peep and the Big Wide World theme… although if his birthday was a little later it would be a Dora theme. Maybe he can be Dora for Halloween. Eh, he’d rather be Map or Backpack.

May 21 – A day at the park