First of all… for regular, short updates and photos please join our private Facebook group! (https://www.facebook.com/groups/youngsbythearch) We’ll continue to occasionally post to this blog, specifically with lengthier detailed updates. But for the day-to-day adventures, follow us over there. We’d love to have you follow Havyn and her siblings! A wild adventure awaits!
Now to the update… We rolled into St. Louis last night and are getting settled. Havyn spent all day at the hospital today in a slew (fun word) of appointments. Starting at 8am, in close to particular order:
- Checked in at Shiners Hospital. Height, weight, vitals.
- Met nurses, physical therapist, occupational therapist, child life team, social workers, and many more. We spent about 4 hours there.
- Quick stop by Subway for some sandwiches.
- Over to St. Louis Children’s Hospital…
- Anesthesia team did some testing and talked us through her upcoming THREE sedations.
- Then on to Orthopedic Surgeon. Met with Dr. Luhmann and his team. Really amazing people. Talked more about some of the details of the procedures and also talked about some studies that Havyn gets to be a part of. Nothing experimental, but there are some large studies currently underway to help narrow down standards of care and best practices. Glad to be able to share to help the greater good.
- On to cardiology. She had an echocardiogram. FASCINATING! Followed that with an EKG.
- The cardiologist talked through some things with us. We learned that the small hole she had in her heart as an infant has not closed up as it was expected to. Ultimately, he’s not concerned, but she does have a small hole between her left and right atria. He said it shouldn’t pose a risk for surgery or for life, really. But he’d like to do a follow-up every couple of years.
- Then the final visit… saving the worst for last. LABWORK! They drew eight vials of blood which Havyn just loved. Oh and then a urine sample.
That concluded an eight hour day of appointments. Next thing is an MRI on Monday and an appointment with endocrinology to talk about her precocious puberty (we may post more on that later). Next Friday is her halo placement.
While we were at the hospital, the other kids got to hang with Danielle and Doug, two of the most amazing people on the planet. They even went morel mushroom hunting!!! What a riot.
Tammy was sharing with me yesterday about how overwhelmed she is. (In a good way, mostly.) It’s AMAZING how many people are rallying to make sure that Havyn gets the help she needs. Between our amazing family, incredible friends, unbelievable neighbors, a great church community, the prayer support, the physicians, nurses, MRI techs, hotel employees, people watching our house / mowing our lawn, and everyone else, it’s a MASSIVE amount of support. And this is one of those moments when there are just no words. To say we are grateful is an understatement. Tammy was reminded of a story from the book of 2 Kings. Elisha, the prophet, was encouraging his servant who was afraid of a potential attack. He said, “Don’t be afraid. Those who are with us are more than those who are with them.” Then Elisha prayed, “Open his eyes, Lord, so that he may see.” Then the Lord opened the servant’s eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha.
That’s how we feel. There is an unseen army that is surrounding us and helping to win this battle. THANK YOU for being part of the army. Please keep the prayers and encouragement coming. We love you.