Wednesday, March 23, 2011

Eli's Turn

We just celebrated Eli's second birthday last month. As we reflected on his second year, we are so grateful it was spent mostly at home healthy, and not in the hospital much like his first year. In fact, we only spent one night in the hospital last year. What an accomplishment!
Here is an much overdue update on our little miracle man:

Physiologically: Eli last had a cath study done in June. Once again, he failed, showing he wasn't ready for his next surgery. He still has pulminary hypertension, where his lungs have too much blood pressure. The cardiology team decided since he growing, developing, and not showing any signs of heart failure to let him continue to grow in hopes that his lung pressures will decrease. In January we had a checkup with our cardiologist. While there we had an echocardiogram done. This showed no changes since his last one, just before the cath. So it looks like his pressures are still too high. We go back for another checkup in a few months. It will be decided then what the next step is. There are no dates set, we are just letting Eli tell us when he may be ready. We just know that the next step will be another cath study.
One exciting change for Eli is he no longer needs oxygen. We have a monitor that tells us his saturation levels. Most of us are 98%. Eli's target range is 75-85%. When he drops below 75%, we have to supplement with oxygen. When he first came home, he needed oxygen all the time. And we were constantly adjusting the amount of oxygen because his levels were very sporadic. As he has grown he has changed to needing it just at night when he was sleeping and now he never needs it. He hasn't used oxygen in at least 6 months. It really is liberating not having to worry about him tangling himself up in oxygen tubes and monitor cords as he is rolling and crawling around. We still put him on a monitor when he is sleeping, since we can't watch him, but he hasn't alarmed in a really long time. We've asked his cardiologist, surgeon, and pediatrician what this means and why he no longer needs oxygen. All of them have said, "He just doesn't need it. We can't explain why. We don't know why. It's not a sign of anything." Okay. I guess we'll just enjoy being "cordless".
Developmentally: After Eli's pacemaker was installed over a year ago, we noticed big changes in him developmentally. He finally had the strength to sit up since he has help with his heart. For many months Eli would roll and scoot on his back to get to places where he wanted to go. He could sit by himself, but it took him a long time to transition from sit to laying and how to get back up again. With exercises given to us by our physical therapist, Eli finally learned how to transition in December. Not a week later, he was crawling. In the 2 months he's been crawling, he's gotten so much stronger. He's fast! Now he is getting on his knees, cruising furniture on his knees, and is just beginning to pull up to stand on things. It's now a race between him and Samuel to see who is going to be walking first.
Just as our physical therapist said, once Eli progresses with his motor development, his verbal will quickly follow. Eli is talking up a storm! Unfortunately we don't understand him most of the time. He has a few dozen words and phrases that we have translated. Everyday we are able to figure out a new word or two. Just this week he has started to repeat a word. If I guess wrong, he'll shake his head and repeat it. When I finally figure it out he squeals in excitement. He is also understanding us better, too.
Two of Eli's favorite things are cars and being outside. If he is inside, you'll probably find him laying on the floor pushing around a few of his many cars, trains, buses or thing with wheels. Given the opportunity, Eli will be outside. He loves to explore our backyard. He likes to throw dirt, crawl in the grass and climb on the rocks. He got a tricycle for his birthday, and since he can't pedal yet, he loves to be pushed around on it. We take walks as often as we can, and he'll just narrate everything he sees along the way.
There are many days that I forget that Eli is so sick. He behaves normal. He is a boy. He is getting stronger. I'm so thankful to see these changes on the outside. I still pray and beg that God is healing him on the inside.


Carolyn said...

Praise the Lord for such a great report! Thanks for the update.