Alex and Maddy

Alex and Maddy

Monday, June 29, 2020

Beckwith Academy of Excellence

In the Spring of 2009, while Alex and I were inpatient in Houston, Bruce enrolled Alex in our Elementary School to start Kindergarten. A Rite of Passage all parents look forward to and dread at the same time! Only a few short weeks later, our immunologist and Mito Specialist came into the hospital room where we had spent most of the past 9 months to tell me that Alex couldn't go to Public School. And so began our homeschooling journey.

Sometime around 5th grade, Alex got tired of explaining every time someone asked him where he went to school and so he started answering the Beckwith Academy of Excellence. Over the years, we have had friends ask to join, but our Academy has always had an enrollment of one.

Fast forward 11 years and we excitedly enrolled Maddy in first grade at the same school where we hoped to send Alex all those years ago. Enter COVID-19...it is not safe for us to send Maddy (who has an immune deficiency as well as many other diagnoses) to school. So for the first time in it's history, The Beckwith Academy of Excellence is enrolling its second student.






An update on Alex...As far as surgery he is doing great and is mostly "recovered". However, he is still battling pancreatitis and with it nausea and pain. His spirits are good and we have a decent pain management plan right now so we are doing well overall.
Thank you for continuing to love us and pray for us!
Ali

Wednesday, June 24, 2020

Thank You!

There are not enough words to thank you all for the love and support that you have showered on us over the past few weeks. I could never name everyone who has reached out, prayed, sent gift cards, brought a meal, etc. I do want to thank a few people and groups however. First, my amazing Mom's Bible Study. They set up the meal train and organized a lot of the logistics for helping us. My Camp Gladiator family...we always say we are #better together. The generosity of my 5:00 AM Central Crew literally brought me to tears. Judy, Amanda, Lauren and Anaise for loving on my girl and allowing Bruce to work and attend some important appointments of his own. And our dear friend Sonny for making sure I was taken care of at the hospital. More mornings than not, Sonny showed up with a coffee for me and on the night Alex was rushed to the PICU he offered to come to the hospital knowing he could be with me when no one else could. THANK YOU ALL!!!!

Alex and I are settling in at home. For those of you who have never spent time in a hospital, it is exhausting. You can't get quality sleep and the emotional roller coaster leaves you bone tired. Coming home is similar to coming home from vacation except you haven't had the fun and relaxation of a trip. But there is unpacking, laundry, mail, bills, etc. Then the added "work" of extra medical care and a 6 year old who needs Mommy's attention. I am starting to catch up, but it is a process Alex is doing pretty well considering. He is still having pain, likely from the pancreatitis more than surgery at this point. But he is so happy to be in his space and have his friends and games as distraction.

We are so grateful that this major surgery is over and we are on the road to recovery. I continue to pray that once Alex recovers his chronic pain is much improved.

Ali

Sunday, June 21, 2020

Sunday Update

Once again there isn’t much to report. Overall, Alex is doing really well. His EKG today was slightly worse, but I am praying he can stay on the new medication. Hi pain level mid morning was better than his baseline at home. Alex lives with chronic pain everyday that is more substantial than most of us would tolerate. To hear him say he felt better this morning and wasn’t really hurting at all was incredible. I really hope we don’t have to stop this medication. Other than this one new medicine everything else has been stopped. We are on all our home medications. Plan is for labs tomorrow morning, another EKG and pulmonary function tests and then hopefully discharge.

Praying my next update is from home!

Ali