Laura's blog

Day 490 - Growth Spurt

Day 483 - More Med Weaning!

Today marks 5 months since Everett moved back home to Maryland. The time has flown by, and we have thoroughly enjoyed living as a family again. Everett adores playing with his big sisters each day and we've noticed a dramatic improvement in his mood and his gross and fine motor skills since his return.

Day 478 - Port Replacement Part Deux

Port replacement surgery this afternoon went well. Everett was a total champ and didn't even cry after waking up from anesthesia. We hope this one stays put so this procedure will never need to be repeated again. Thanks for your continued prayers and support!

Day 476 - Best Labs Ever, but More Surgery

Today's labs looked the absolute best they've ever been! It's so amazing to see how far our little guy has come! Unfortunately, our celebration was short lived because we learned that Everett's new port has completely moved out of place and will need to be replaced AGAIN. Surgery should be scheduled for next week. We are obviously disappointed, but certainly thankful Everett is not sick. Thank you for your continued prayers and support!

Day 469 - More Steroid Reduction!

Weekly clinic visit went great! Everett's Primary Physician at Sinai returned after being away for several weeks and was thrilled to see how much our little guy has changed and grown. Labs continue to remain stable, so we may begin to wean his steroid medication a little more. Yay!

Day 466 - On the Move in the New Year!

Happy New Year! Thank you for continuing to provide support and prayers throughout 2017! Everett is certainly starting the year off right...he is officially "on the move!"

Day 465 - Community Support

We would like to extend our greatest appreciation to Gary Weddle, Jack Lloyd, Chaz Spalding and Rev. Mike Beiber from the Mount Zion United Methodist Church in Myersville, MD. These gentlemen braved the cold this morning to transplant our landscaping from the front of our home in order to clear space for a wheelchair accessible ramp for Everett.

Day 454 - Surgery Success!...Mostly

Initially, we believed today's port replacement surgery went well. Everett was a total champ and smiling and giggling afterwards. He didn't even need additional pain meds during recovery.

Day 449 - Port Replacement

Unfortunately, Everett's port needs to be replaced. The medical team took one x-ray and immediately further study was necessary. Everett was in the radiology room for less than a minute. Since our little guy has grown so much over the past year, the end of the catheter has migrated about 3 inches from where it's supposed to be. We are hoping to be able to schedule surgery for next week at Sinai.

Thank you for your continued support and prayers!

Day 448 - Overnight Stay

The weekly clinic visit has turned into an overnight stay. Everett's port has stopped working, so the radiology dept will need to investigate in the morning to determine the problem. We are hopeful that the port will not need to be replaced and the team can get it working again. Even though it's been a frustrating day, we are incredibly thankful that Everett was not admitted because he is ill.

Thank you for your continued prayers and support!

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