A Bundle of Myrrh

November 15: We had our first appointment with Urology today. Rose had an ultrasound and a VCUG (Voiding Cystourethrogram how fun is that word?!) It was a bit crazy to see my baby in a vice with her little arms pinned to the side of her head on a board that flips from side to side but we got through it.

We were glad to hear that as of now Rose has normal bladder and kidney function. This is something that could change over time so always needs to be monitored but we’ll continue as we are and go back in 6 months for another study.

November 29: Rose turns two months old. I was sure she was three months already, it’s been a long two months and just feels like she’s been here forever already I guess!

To our delight, sweet Rose is starting to smile and talk to us. She’s still not the best napper but sleeping great at night. She’ll be in the casts for a few more weeks but her feet are greatly improving already.

November 3: Rose’s journey of a thousand casts began today. Each week for the next 8 weeks she’ll get a new set of plaster casts as her clubbed feet are gradually adjusted to a straightened position. This process of “serial casting” aka the Ponseti Method is pretty typical in babies with the myelomeningocele (Spina Bifida) Rose has.

Once again I’m very grateful to the Mamas who have shared aspects of their children’s lives on social media. Seeing other babies go through this was so helpful in preparing me for this part of Rose’s life. I was able to expect it, process it and have it seem as normal as it can be in our new SB world. So far she’s done well having these on her little legs.

October 25: Today is World Spina Bifida and Hydrocephalus Day. We’ve only been on this road for a short time but we’ve already seen so much of God’s goodness and provision. What a gift to have so many people praying for our sweet Rose, encouraging us and being willing to help in any way they can.

It’s also been a blessing to get acquainted with other Mamas raising little fighters, there’s so much support in that. I’m so grateful they are sharing their lives with others, I really needed that in the early months after Rose’s diagnosis. There is much to be thankful for.