The week started off pretty slow with only therapy Monday and Tuesday. Wednesday we had a doctor appointment and violin lesson for Alex. We saw our pulmonologist. It was an overall good appointment. Alex's testing is always a mixed bag. Some of his testing has improved and is the best we have ever seen. Other tests remain terrible and are even slightly worse. For right now we will continue our course of Bipap with a back-up rate to help him over night and continue to check his function every 3 months. We were excited to get back to see Sonny and have a violin lesson. Sonny and Alex have such an amazing relationship and could spend all day, everyday hanging out. It's a wonder they ever get any violin in!
|When you are heading to Violin, you must wear your Sonny shirt!|
Friday was a crazy day! We started the morning with GI appointments. We had really productive appointments for both kids. Maddy has gained 2 lbs since getting her tube. So he was really happy with that. Her reflux has been getting increasingly worse since April. We do not want to have to put her through another surgery so we increased one med and are switching a second. We may add a third med and see if we can get it under control. Dr. O is also concerned that she had pancreatitis following her surgery. He feels like we need to test for Hereditary Pancreatitis (which Alex has). He is pretty sure it will come back positive, but feels like it is important to have it documented to help us make treatment decisions going forward. As for Alex...The main discussion was about the mass that was found outside his colon in May. We will be scheduling an MRI to try and get a better visual so we can see exactly what it is and what we need to do to remove it. We also discussed how he has been doing since his last procedures and what we may need to consider for future treatment.
After our appointments, Maddy and I went to meet our buddies at the pool and spend some time together. I didn't get any pictures at the pool, but did later in the day.
|Maddy helping take apart her crib!|
|Pulling into Main Event|
|Alex and Sean (his driver)|
|All the Ferrari Kids and Drivers|
|Alex and JP (An old friend from Night of Superstars)|
|Alex and Manny (Founder and CEO)|
|Alex, Jayla and Manny|
|Best Big Brother|