Special Gifts

Before Sofia I had practically zero knowledge about Down Syndrome. I have since read up and exchanged messages with families who have a family member with Down Syndrome.

I have learned of accomplished people with Down Syndrome such as Frankie Scarfone, a karate hall of famer; Deanna Sipaco, a visual artist who has exhibited her works here and abroad, even gifting Japan’s Princess Masako with one of her paintings; and Clarissa Tiongson, who produces paintings in collaboration with her mom. Plug: Clarissa’s paintings are for sale. Clarissa’s mom, Malu, gives seminars and has written a book about raising a child with Down Syndrome. Gotta add that to my reading list.

I hope this little post of mine enlightens at least a few other people too.

Sofia update: mostly yellow poop today, just a teeny bit of blood early morning. Go, go, yellow!

Nhatz ran into the priest who baptized Sofia, Fr. Silva. He visited the NICU today and prayed over and blessed her.

 

No Deadlines

You can’t give God deadlines. - St. Pio

The summer has come and gone. I was really looking forward to it – with Sofia, Nhatz and myself spending time with the two boys off from school. I’d get the boys to do some chores, watch them take swimming lessons and insert a teeny bit of structured learning I would cleverly disguise as fun.

I used to pray for Sofia’s complete and speedy recovery. Clearly, speedy isn’t part of the plan. When Nhatz’s 2-month vacation leave was about to end I braced myself, thinking God would make the events fall into place, the tension of going through the pulmonary banding operation included, and then things would be back to normal as Nhatz went back to work. That passed and we were still waiting for Godot. The rainy season started. Maybe she’ll be home the feast of the Ascension? Nope. I had silly thoughts as my grandfather’s death anniversary approached. Then Yoachim went back to school. Then Tyler. And my maternity leave ended.

Can speedy be part of the remainder of the plan? I hope so. I now pray for complete healing, for Sofia to come home to us a healthy, happy and strong baby girl, and for her to live a full life with Nhatz, Yoachim, Tyler and myself in the service of the Lord. For amidst all this God has shown us that the world is full of love. Yesterday Sofia got a beautiful card from some of my projectmates in Minnesota. It said there was a circle of love – and she was in the middle of it. I believe that. People around the world are praying for Sofia. Friends are saying they have their kids praying for Sofia. Even people we don’t know say they are praying for Sofia.

Her bleeding from the colon has recurred, we need some intervention. I feel crushed knowing she’ll have another procedure (that I don’t want to go into yet), but it still isn’t the one that will get her home. Please pray with us that her path to get home with us becomes a straighter path. We have meandered too much.

 

No More Bloody Poop!!!

Sofia’s poop is a beautiful green-yellow now! No procedure done! She had us searching for different types of pediatric catheters for the options we considered for a while there.

She responded to medication that helps control bleeding.

 

Bleeding

Sofia has been pooping blood. It’s coming from the transverse colon. I don’t know yet if there’s a solution…

She has been getting transfusions to counter the blood loss.

Those willing to donate blood, please go to St. Luke’s QC or Global blood bank. Say it’s for Sofia Rosal. Donors must not have tattoos or piercings done outside of medical institutions. You may call the hospital blood bank directly for questions. Thanks.