1 week post surgery

Wow, it’s hard to believe it has been over a week since Robert’s surgery. That day and night was one of the hardest of our lives, and I am so thankful it is behind us.

It’s a much happier day today – Robert’s 5th birthday! Each day since we’ve been home Robert is gaining energy and confidence in walking! It certainly helps that he is motivated to get up and play with Anna and show off his lightsaber skills to his friends 🥰

His back/hip pain from the bone graft is improving. And now we are praying his lingering post-op fever is gone today. Apparently a low grade fever after a major surgery is very common – his body is working overtime to heal. I am also hoping we don’t have to do another bath for a week – we finally did that last night and it was the hardest thing we’ve done since we were in the hospital. Robert was so fearful of taking off the bandages (that he couldn’t see since they were on the back of his neck and back) it took us over an hour of sobbing and screaming to get that done. Whew! 😢

I will try to provide another update next week! And hopefully we will be getting close to thinking about returning to school 🙏🏻

Thank you for the continued prayers, messages, love, meals … it feels so good to have so many people around us. And an extra special thank you to my two other Morquio Mommas who are on this journey too … you got me thru last week … and we will find a cure! 💜

Now it’s time to celebrate the big 5 🖐 🎉


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