Making choices for your child’s future is a challenge for every parent. In Jane and Andy’s case with Ramona it feels like they are constantly getting new information about her health and having to make choices at an alarming rate. Today is one of those days.
Today Ramona had a visit with the Geneticist. They have found that Ramona has a Sacral Dimple. A sacral dimple is an indentation, present at birth, in the skin on the lower back. It’s usually located just above the crease between the buttocks. It can be an indication of tethered spine which can come along with q22 and may require surgery. So Ramona is scheduled for yet another test, a MRI for next week to rule out a tethered spine.

As you can imagine Jane and Andy are overwhelmed. Today added to the list of possible needed medical interventions for Ramona. To get a clearer picture let me lay it out for you. The Cranial Facial Doctor has suggested a helmet to help shape Ramona’s head since she has had such an extended time on her back. They have a short time to decide to go ahead with this. It would require she wear this helmet 23 hours per day for a few months, making outdoor play in the summer a distant memory.
The second surgical consult for the g-tube surgery went well as they got the go ahead to do it. However she is currently scheduled for the necessary GI study in late July in order to have that surgery in early August.
Now they have the MRI test. They are thrilled that Ramona no longer has to have oxygen but they are understandably overwhelmed by all of this.

Please pray for Jane, Andy, Ramona and Simon. They had a lovely vacation but are still battling lack of sleep and are handling a tremendous amount of stress. Pray they would receive clarity and discernment on which interventions to agree to and which to wait on or say no to. Pray that Ramona handles all these tests and doctor visits well and that God would strengthen their family and marriage through all of this.
I had the amazing opportunity to spend a few hours with all 4 of them this past weekend and this family continues to amaze me. They have faced and continue to face huge challenges and difficulties yet they continue to love deeply and relish in the joy found in each day. I pray God covers them with immense blessings!

Jane will be posting some stellar (I got a sneak peak) photos of their vacation as soon as they get the car unpacked. I am not sure how they got it all in there!
Thank you all for continuing to lift them up in prayer.