Alex and Maddy

Alex and Maddy

Saturday, July 15, 2017

Amazing End to a Good Week

This has been a good week!

 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!

Princess Madelyn
We have been telling Maddy for teh past few weeks that when we ran out of pullups/diapers she was going to have to wear panties because I wasn't buying any more diapers. So Wednesday afternoon we transitioned to panties. Overall, she has done great. Only 2 accidents, but she would be much happier if I would just put her back in diapers! We told her she used the potty we could let her sleep in her big girl bed and go to the pool. So Wednesday night she slept in her big girl bed for the first time (we've had it since early June). Thursday we headed to the pool for a fun morning!

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.
Best Buddies
Friday night was exciting. This is something I haven't discussed openly for safety reasons. Last August, Bruce started living/working in San Antonio Monday through Friday. He would come home late Friday night and leave Sunday afternoon/evening. It started off not bad, but as the year has gone on we have run into two main issues. One, financially it is a struggle for us to afford to residences on Bruce's salary. Two, when one of the kids is sick or needs to be hospitalized, it is really hard for me to juggle meeting everyone's needs. Bruce has had an incredible boss and he acknowledged how difficult this was for a family in our situation. He recommended Bruce for a transfer to a different division in the company. Starting Monday, Bruce will begin his new position back here! The kids are so happy to have daddy back home, but we are all working on adjusting to a new norm!
Maddy helping take apart her crib!
Today was an incredible day! Alex has been able to experience some amazing experiences and today was one of those days. Today, Alex got to do something most people never get to do in their lives. he rode in a Ferrari! Our friend the Glenn's let us know about an organization called The Ferrari Kid. The Founder and CEO is a cancer Survivor from childhood and wants kids with cancer and other illnesses to experience an amazing day to take their minds off what they are going through. Twelve selfless Ferrari owners brought their Ferrari's to take these kids on the ride of a lifetime. The Ferrari's delivered them to main event where we had lunch and spent the afternoon playing and making memories. If I'm being honest, none of us were that excited to go this morning, but we got in the car and all agreed it was one of the most fun days we have had!
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

Weeks like this make us so grateful for all of the incredible blessings in our lives. We love spending time with friends and seeing the good in generous people!


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