We've had a fantastic week so far. Friday night, I took Aaron and some of the kids to the zoo for DreamNights. We had a fun time there, although I did draw the line at getting Aaron's face painted.
|Andrew's baptism -- David, William, Matthew, Jonathan|
Mary, Deborah, Rebekah, front row - Michael, ANDREW
Aaron & Joseph
Then yesterday was a marathon medical day. Once every three months we go up to PCMC for a coordinated care visit. We see pulmonology, ENT, respiratory, and a special needs pediatrician. They all gave Aaron gold stars! He is doing so incredibly well! He's 14 1/2 pounds now which is only about 3-4 pounds lighter than his siblings were at 1 year. Not bad for a kid who wasn't supposed to grow and thrive.
We also got to see another little boy who lives down the road from us. Parker has Down's Syndrome and his trached as well. I've followed his blog Praying for Parker and enjoyed his mom's comments and loved watching his smile. He was there at the clinic at the same time and it was so much fun to meet them and talk to them.
|Aaron with Mark, his occupational therapist|
Our doctors at the hospital are so invested in Aaron. Dr. Marta King was his doctor on the floor yesterday. We were admitted to do a pH study. It involves putting a tube down his nose into his esophagus to measure if there is stomach acid being refluxed into the esophagus (not a good thing). Anyway, once the tube is placed, we just hang out for 24 hours. Then early next week we'll get the results. But we weren't doing anything else. So Dr King asked when our next echo and cardio consult were. Turns out we're scheduled for next week. So she made some calls and we got both the echo and the consult yesterday. They even did the echo bedside, Bonus!
|He loves pushing the button on his new toy to |
make it light up and play music.
Then Dr Menon, cardiology, came in. Aaron still has pulmonary hypertension (big surprise) BUT the right side of his heart is not as thick as before. That is a VERY good thing. It means his heart is not only not working as hard, but it's resting enough to begin to undo the damage done earlier. And his VSD and ASD are also very small. He said that they are small enough that he doesn't think they will need repairing. He was also very kind in inquiring about whether we were getting the care we needed.
|All Our Kids! (they're even all smiling)|
It was also good to be up there with him when he's feeling well. I loved being able to show the staff what he's really like. So often they only see him when he's sick and needing help. They don't get to see our happy, smiley, playful baby.
And in three more days, it's PARTY TIME!!! You're all invited. Bring some balloons and enjoy cake with us!