Laura's blog

Day 357 - A Long Day

Woohoo! Labs and rash are are stable. Our weekly visit to Sinai is turning out to be a long one because Everett needs infusions of two separate medications that help his immune system. We arrived this morning at 11am, but there was a delay at the pharmacy and we probably won't arrive home until 2am at the earliest. But we certainly aren't complaining...being able to go back to our home together is always better than living apart!

Day 356 - Chemo Anniversary

The creams seem to be working, and his rash is definitely improving! We look forward to Everett's weekly check up at Sinai tomorrow and are hopeful that labs will also continue to remain stable or improve.

Day 355 - Too Sleepy

Sessions with our new in-home PT are going well, but we think it's because they're so early (2 hours before he typically wakes up) that Everett is too sleepy to protest.

Day 354 - Deflating Mr. Stay Puft

For the past few weeks, we have been weaning a steroid used to protect Everett's gut from Graft vs Host Disease (GVH) and to prevent vomiting. So far, the weaning was going well, but unfortunately, our little guy has broken out in a GVH rash. We are very, very hopeful that we can manage the reaction with topical creams so we don't have to resume the steroid dose again. The steroid dose works well against GVH, but side effects include suppressing Everett's already poor immune system, decreasing bone density, and making Everett look like the Stay Puft Marshmallow Man, so we are really hopeful we can get Everett off of it soon. Thank you for your continued prayers and support!

Day 353 - Big Sister Helpers

Having a sibling with special needs has many challenges, but the Big Sisters have been so helpful reminding visitors to wash their hands and remove shoes, helping to administer Everett's medications, hook up his tube feeding, giving him a bath and replacing toys when they fall off his stander tray. Thank you for also continuing to bless them with your support and prayers!

Day 352 - Family Movie Night

Everett is ready for his first official Family Movie Night!

Day 351 - Fine Motor Skill Improvement!

Over the past few days, we have observed Everett's fine motor skills and interest in small toys (without lights and sounds) improving. Instead of immediately pushing everything onto the floor, he is taking time to explore his toys and use both hands together.

This is a huge milestone in the PMD world and we could not be more proud of our little fighter!

Day 350 - One Year Ago Today

On this day last year, Mommy and Daddy drove Everett to Durham, NC, to officially begin his transplant journey at Duke University Hospital.

One year later, we still spent the day at a hospital, but are so grateful that we all got to return home after our appointment!

Day 349 - Reunited!

Hooray! The Big Sisters are finally well, and the siblings are reunited again! The house is super noisy, and Everett is loving every minute of it.

Everett also did very well during his first physical therapy session since his return to Maryland. Just another indicator of how Everett's mood has dramatically improved since he's been home.

Day 348 - Hoping for Sisters

Hoping and praying that the Big Sisters are healthy enough to return home tomorrow!

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