ivi grace update 1

Many of you might not know about our journey over the past few months, so I’ll take just a moment to give you a brief overview. We knew when Ivi Grace was born that she had been very low in the womb (face down) for a long time. This seems to have contributed to or caused two conditions. First is Torticollis, where an infant tends to turn their head to one side most of the time. This is mostly treated with constant physical therapy. The second, and more severe, is Craniosynostosis. Craniosynostosis is the fusion of the plates of the skull. This is treatable only by major surgery, and if not performed, she would most likely have brain damage and certainly a deformed head. Links to both of these conditions are below, so I’ll not go into detail here.

 her hand in mine

her hand in mine

This past Wednesday, we took Ivi Grace to Charlotte to the Carolinas Medical Center for a CT scan of her head. This is most likely where her surgery will be when the time comes. They tried to perform the CT scan without sedating her at first, and she was not up for that. She was hungry, tired from traveling (it’s a two hour trip for us) and not being able to nurse due to the likelihood of her having to be sedated. As we were filling out the mountain of paperwork with the nurse to obtain the needed drugs, I was able to rock her sound asleep. We quietly tiptoed into the scanning room, placed her on the table and did the scan in less than a minute. Right afterwards, she woke up crying, but she did the scan with NO DRUGS, praise the Lord!

We are now waiting for the results of this scan to be reviewed by the doctors. Hopefully, it will not take a 1,000 forevers to get the information and know where we are heading and when.

As for now, know that your prayers, cards, calls and support keep us going. Also, we count it a blessing to know that these conditions are treatable. There are so many more children in the world who will never have a chance at a normal life like Ivi Grace. Even through all this, we are blessed. She is the sweetest little girl in the world, but of course, this is her father talking.

Links:
Craniosynostosis
Torticollis