It has been a busy couple of days here at the Whitley house! After Harper’s pediatrician visit on Wednesday, we had a home visit from her Early Intervention Services coordinator to touch base and develop her Family Services Plan. Basically we just set some goals for Harper to work on with her therapists, filled out more paperwork, and received some resources for parents of children with exceptional needs. I haven’t looked into any of those resources or support groups yet. As I was discussing with my mom earlier in the week, there tends to be such a negative connotation associated with the term “special needs,” and I’ve been trying to process through that. So many people are quick to assume the worse when you use that term, but the reality is that it covers a wide expanse of needs that children can have. And to be quite honest, as a mom and a teacher, I think all children are special and have unique gifts and abilities and needs! But my opinion is neither here nor there, so moving on…
Harper did amazing with her physical therapy yesterday. She tolerated tummy time and made good attempts to lift her head. She tracked objects and turned to look at things, and put real effort into trying to grasp objects. She did not get as irritable as quickly as usual, so that alone was huge progress. At this point we are working on stretching her neck and chest muscles, encouraging her to look to the right more, and still practicing grasping objects. Harper has improved some, but there is still a lag in the movements in her right side. Her therapist said this is more of a neurological issue, but that it should continue to improve with lots of practice and work.
We had a major praise for Mom and Dad’s wallet yesterday as well… our insurance provider has finally given authorization to cover the cost of Harper’s formula! She is still on Elecare, which has to be ordered through the internet or through a medical supply company, and at this point runs somewhere in the range of $400 a month. We’ve been ordering it ourselves up until now, and we were afraid we were going to have to discontinue it and try something else due to the cost. In fact, the doctor had just given us some sample formulas to try, but once again God’s timing is perfect and we got the authorization before making the switch!
This morning was Harper’s c/t scan to check her head. Of course, her appointment happened to be in the middle of Tropical Storm Andrea, and, silly as it was, I worried about that all night! I was uneasy about taking her out in bad weather and driving in rough conditions, but amazingly everything was perfect. It barely even rained during our trip to Cape Fear Hospital and back! And even more amazing was the fact that Harper slept through the whole process- she didn’t even wake up when we moved her from her seat to the table for her scan!
Her pediatrician called this afternoon with the results… They did not have access to the imagery from Duke, so all they had to compare this scan to was the initial scan she had before surgery. Obviously things look very different now as there was some damage from the hemorrhage during the first surgery and the fluid was drained off while at Duke. But so far they don’t see any glaringly urgent issues. The neuro at Duke and the pediatrician both agree, however, that Harper should go ahead and be seen at Duke sooner rather than later. So, we should get a call Monday letting us know when they can work her in up there in the next week or so. Between now and then, we keep praying and enjoying our precious little girl!