2-24-10 Updates

Now that I have brought everyone up to date on our situation with Dean, I will begin to post in the present tense when I have additional information to share. Ben and I are continuing to research what we can on our own. I have joined a forum http://www.cappskids.org/ to talk with other parents that are or have dealt with CS, but I have not found a lot of places to read testimonials (which is another reason I am making my updates available via blog.) Next week's schedule will keep us busy. In addition to Ben working night shift, Dean has cs therapy with Anne on Monday, the John Hopkins consultation Tuesday, and an appointment with the other cs therapist, Beth, on Thursday. We are praying that God will use each appointment to give us clear answers as to what treatments/surgery would be best for him. Some specific questions I have for Dr. Ahn are if the minimally invasive surgery is a guaranteed single procedure to fix Sagittal CS. I also have a lot of questions about the helmet therapy. I am also praying that winter weather will not cause us to have any problems getting to our scheduled appointments. Although minor in comparison, Dean is getting over some congestion, and I am praying that he will be 100% healthy during this intense time for him. I came across this testimonial recently and thought I'd add the link. It is very encouraging to me to hear how well other surgeries have gone for other families. http://sciencestage.com/v/12589/andrew's-endoscopic-craniosynostosis-repair.html

2-22-10 Sceduling appointments

My prayer since Friday was that we would be able to quickly schedule an appointment with Dr. Ahn at John Hopkins. When I spoke with his receptionist, she said that the doctor only saw new patients once a month. His next day scheduled for that was March 2nd. Only one week away! This was definitely God's perfect timing! If I would have had to wait a month, I am sure I would have been anxiously looking for someone else to see Dean in the meantime. We confirmed an appointment for 3pm, and were told to wait for an information packet in the mail. Ben and I were so thankful to have this scheduled. Later that morning, I received a call from a Craniosacral therapist (Beth) in Camp Hill (my naturalist had recommend this specific woman.) I discussed Dean's situation with her, and she told me that she had treated a lot of infants with craniosynostosis. She told me that in less severe cases it is sometimes possible to prevent surgery, but that either way the therapy is vital in releasing spinal fluid and relaxing the parts of the head that may be strained from the uneven brain growth. Ben and I took some time to discuss all that she was able to tell me. We liked Anne, the therapist Dean had seen on Saturday, but we decided that we would like to get another opinion from this woman who had dealt with many cases similar to ours. (I am so thankful that Ben doesn't hesitate to have Dean seen by anyone who can help. He doesn't bat an eye at the distance or cost required to care for Dean. I am grateful for his help and sacrifice to provide for our family!) I called and made an appointment with Beth, explaining that I was happy with the near-by therapist I was seeing, but that I would like her to see us and evaluate our situation based on her knowledge. By Monday afternoon, we felt confident that we had done our best to make appointments to acquire the information we needed to move forward with treating Dean. We felt that all of the professionals we had appointments with were made known to us through God's provision, and that was what we wanted!