Quarantine Craziness

When I last updated who would have ever thought we would still be quarantined 2 months later! I haven't posted because life isn't very exciting when you are stuck in your house day after day. But with some recent medical updates I decided it was time.

I am going to start with the medical... Alex has had pretty significant and ever increasing stomach pain over the past 6 months (beyond his normal). His doctor ordered a test to look at inflammation in the GI tract. Normal is less than 50. Severe inflammation is anything over 150. Alex's came back at greater than 8000. At that point it was determined that he needed scopes ASAP. He had those procedures on Wednesday. Let me back up and explain a little about his last major surgery so the findings make sense. When he had surgery in 2017 to detach his colon from his small intestine and create his ileostomy, they left a second small opening called a mucous fistula that is supposed to allow a very small amount of stool to trickle through the colon to prevent colitis from forming. When Dr. O performed the colonoscopy on Wednesday he found colitis (expected), but also cement hard impactions of stool throughout his entire colon (unexpected). Basically, his GI dysmotility is so severe that even that tiny amount of stool could not travel through the colon as it should and caused these plugs that were blocking his colon. Going into the scopes we believed we were going to have a choice between two treatment options, daily enemas or surgery, but the findings left us with surgery as the only option. Alex's surgeon will go in and remove his entire colon. Typically it is a 4-5 day inpatient stay, but based on Alex's last surgery and recovery they expect us to be inpatient for several weeks. We have not scheduled the surgery yet, but we would appreciate all prayers as Alex is already struggling with anxiety in regards to this upcoming surgery.

The only other medical update I have is on little bits...her left knee that dislocates on a daily basis has been giving out on her more frequently and caused significant pain for the first time this week so we need to follow up with the knee specialist/orthopedic surgeon. I am hoping this is not a summer full of surgeries for the Beckwiths!

Otherwise the past couple months have been busy with homeschooling Maddy, Zoom ballet class and a few visits to visit the horses, lots of walks and games. Last week Maddy started back riding again.

Zoom Class Meeting

One of MANY walks

Ballet Class

Reading

Helping Daddy wash the car

Poor Mia!

My happy boy!

Easter Sunday

More ballet class

Cuddling Zoey

Mad lost a tooth

We registered for 1st grade. Hopefully we get to go!

Visiting Misty

Our first week back to therapy. HAPPY girl!

Alex in Pre-op before his procedures

Therapy this week

Zoey after a much needed visit to her groomer!

Please pray for us over the next few weeks. For Alex both mentally and physically, but also Maddy. Extended hospitalizations are hard on her and this time she will not be able to visit which will make it even worse. Thank you for walking beside us on our journey.

Ali

What a month!

Even though in some ways I have more time on my hands these days, in many ways I feel busier or struggle to get things done. I am someone who thrives on schedule and planning so this has been an adjustment for sure! But I figure we can all use some smiles so i am going back to show some of the fun we have had over the last month (especially before quarantine)!

At the end of February, Maddy was able to visit the Elementary school she will attend next year for Storytime. It was supposed to be monthly through the end of the school year, but...

 We were also so blessed to attend our fourth TCU Dance marathon. This is a day that is always special to us. We are able to share our story and thank the amazing students who work hard to raise money for Children's Miracle network Hospitals and Cook Children's. And did I mention it is SO fun!

Of course there was the usual ballet and horseback riding and playing with friends. The second week of march right before all of this craziness really took off, Maddy had the opportunity to go to Horseback Riding Camp for 3 days. She LOVED every minute of it! They fed and bathed the horses, cuddled, puppies, fed a camel, and of course rode a lot!

Camp is exhausting!

feeding Muffin, "her" horse for the week

The day after camp ended is when the Coronavirus quarantine mostly started for us. We did have one more doctor's appt, but otherwise we have pretty much not left the house. It has been an adjustment, but overall is going well. Maddy has been amazing with homeschooling and I have very easily added one more student to the Beckwith Academy of Excellence. For years, people have asked me if I would homeschool Maddy and my answer has always been a resounding NO! I always said one of us would be dead within days. Well I stand corrected. My sweet girl has been near perfect. She is working hard and has given none of the attitude and sassiness I expected.  She is reading, writing, doing math, arts and crafts, science experiments.  And our day always ends with some family game time. We have had so much fun playing board and card games late each afternoon before I start making dinner!

I posted on FB this morning one of my very favorite songs, Beautiful Heartbreak. I will end with the same prayer I offered there. May you all find some beauty in the heartbreak over these coming days. Prayers for peace in the uncertainty and love and kindness for all around us. 

Ali