Yesterday we met with an orthotist at Hanger orthotics to discuss helmet therapy for Anna. While we were there we got a bunch of questions answered and an evaluation/measurement of Anna's head. Her numbers suggest Plagiocephaly (which we knew) and Brachycephaly, which means she also has flattening on the back of her head as well. Her celphalic index percent was 95.8 and should be around 80% (http://en.wikipedia.org/wiki/Cephalic_index). Her cranial vault asymmetry is 7.4mm...We want this to be 0mm!. All this to say that a helmet will be a necessity.
Here comes the confusing and stressful part. We didn't think that orthotist had enough experience (only has treated 4 babies TOTAL) so we are meeting at another Hanger location tomorrow with BJ who apparently has over 13 years experience. We still have our specialist appointment with Dr. Kelly but we found out the cost of his services is about the same as the helmet. Keeping in mind that none of this is covered by insurance, we are having to make some decisions. We, of course, will do anything we need for Anna...just all in what is actually needed and best for her. Once we decide on an orthotist, we will need to order the helmet within a day or two of the evaluation as it has to be fitted within 2-3 weeks of the scan (FDA mandate). The helmet will take about 2 weeks to be created and then our 4 months of helmet therapy will begin.
I joined another Plagiocephaly support board and had a woman from Nashville contact me to talk about her story and problems that she experienced. She also went through Dr. Kelly and BJ...so her knowledge and help is extraordinary.
Today has been a tough day for Anna as it seems her Torticollis is in full force. We are continuing our stretches...but will definitely have to work harder today. I am sure yesterday's appointment with the scans took a toll on her.
This is so hard and confusing as I constantly struggle with the best decision for Anna. Do we see Dr. Kelly? Do we bypass that process and go straight to Hanger? Do we do both?? It's not easy, but we know we just have to continue to do the research and hope what we chose is best.
To be honest, the hardest part for me will be not being able to kiss her sweet head all day. I am getting in as much as possible every second.
Awww, Beth. I know it must be so confusing and overwhelming for you and John - so many questions, so many things undetermined, so many decisions that need to be made. I wish I could give you other advice, but the only one I have is to pray about it. Scott and I will definitely keep you all in our nightly prayers and ask that God leads you both to what is best for the june-bug. Do you say the Prayer of Jabez? If not, start praying it - crazy things happen. Do you have a family friend who is in radiology or anything similar that can give you some personal advice from experience? Glad you have joined support boards - it sounds like right now you just need some guidance and reassurance that you guys are on the right path (which I'm sure you are!).
ReplyDeleteI'm sending kisses over to Anna and her little head right now! Devour it for me!
Love you bunches!
la