3-2-10 Visit to John Hopkins

Our family had a very long day today. I'd like to thank everyone who was praying for us. We have been receiving letters, calls, and emails everyday filled with encouragement and prayer support, and we feel so blessed by that! We were a sleepy bunch as we headed for Baltimore today. Evelyn and Dean are just about over their congestion, but Kara was up half the night (with me) coughing. I can't complain though because Ben worked night shift and slept for a total of 3 hours before hitting the road. We dropped the girls off at their Grandma's (Ben's Mom) who was gracious enough to take time off to have them for the day. Ben and I arrived at John Hopkin's outpatient center at 2:30. We met with Dr. Ahn (neurosurgery) and Dr. Simmons (plastic surgery.) They both agreed that Dean had Sagittal Craniosynostosis and would require surgery. However, they do not think Dean is a good candidate for the minimally invasive surgery. They have found that if the minimally invasive surgery is done after 3 months of age that there is a higher possibility of needing another surgery later on. They would like to perform the reconstructive open procedure on Dean at around 6 months of age. This surgery is done by cutting a zigzag incision from ear to ear (called a stealth cut because it will camouflage the scar when his hair is wet etc.) They will then remove the back half of the scull and the plastic surgeon will reshape it and put it back in place. Dean will not need a helmet after this procedure since he will come out of surgery with his head reshaped. Due to the seriousness of a surgery like this, we were told to expect a 7 hour surgery, one day in the ICU, and several more days in the children's hospital. I will admit that I am disappointed that the minimally-invasive surgery is no longer an option for him, but I am thankful that I have one less choice to make. Ben and I felt very pleased with both doctors. They took their time with us and provided us with confident answers to all our questions. They said they do a surgery of this type every week, and that there are very few complications. Two of the big concerns during the surgery are tearing the membrane that protects the brain and disturbing the sagittal sinus (a dilated channel for venous blood.) If the membrane is torn they can easily fix it; from what I understand, the concern is that they notice if it tears while removing the scull. Protecting the sagittal sinus is much more serious because it would mean an enormous loss of blood, and the danger of having air enter the channel and cause an air embolism. These are two concerns that we will definitely be keeping on the top of our prayer list. Since we now know that we do have to do the open surgery we could have it done at Geisinger where he was first seen. I am currently leaning toward John Hopkin's although it is much farther. Not only do they have their incredible reputation, but I felt very comfortable with the doctors I saw today. Dr. Simmons held Dean during most of the appointment and gave us his cell phone number and email so we could contact him with any additional questions. We know the Lord is taking care of Dean, and will guide us as we choose his surgeons. I expect to hear from John Hopkin's later this week on when they would want to schedule Dean for the surgery. I am just thankful for our progress today, our safe traveling, and the support from loved ones (especially Ben who brought us home at 9 pm and then went back into work.) Dean has another craniosachral therapy appointment Thursday and I will update again after that (however, I will not be able to post until Friday night.)

2-25-10 A personal note

I am humbled by the fact that one week ago today I woke up thinking, "I should have cancelled this neurologist appointment; nothing is wrong with my baby." Last Thursday was devastating, but I can honestly say that I am thankful to wake up today and know Dean has CS. Ignorance may be bliss, but understanding brings joy and purpose. I look at Dean differently, not as fragile or unfortunate; but I am able to see what a gift he is and the impact he is able to have already. Ben and I are amazed at how many people are praying for him right now. What a powerful way to start out in life- by being lifted up in prayer by God's people. I believe that God has great things for all my children, but Dean is blessed to have great things being done for him now. I was paging through the New Testament and the titles through out the Gospel books stuck out to me, "Jesus Heals Many, Jesus Heals a Paralytic, Healing of a Boy with a Demon, Healing of the Blind Men," and on and on. Ben and I are trying to prepare for a very serious surgery, but I will not limit what God can do for Dean. We have not had any scans yet of his scull (he was diagnosed visually,) and I still pray that God might not require Dean's little body to undergo surgery. Either way, I am looking forward to seeing God's plan for him unfold. On another quick note...If you want to receive notices when I publish updates, you can become a follower by clicking the "followers" button in the left hand bar. I will try to post as soon as possible when we find out important news especially when we actually are in the "surgery stage." From what I understand, you will receive updates whether you are a public or private follower. I can only see if you are following when you choose the public option. I'd love to know who is reading, but it is up to you.

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!

2-21-10 A day of resting in God

Ben was supposed to work 10am-10pm that Sunday, but he decided to go in late so that he could come with me to church. I was relieved because Ben is much stronger than I am, and I didn't want to explain our news alone. He has been positive and supportive ever since we found out about Dean. The response that we experienced at church was heart-warming. After our Sunday school class heard about our situation, they prayed and committed to praying for our family for the next month. That commitment was very precious to me. The sermon at church was about making commitments to the Lord (God tends to teach me with repetition.) I prayed that I would be able to completely commit Dean to God's care, and allow Him to take control of my worries. The remainder of church was filled with well wishes and promises to pray for us. I went home, and finally felt the busyness of the past few days come to an end long enough to rest at home with the kids. Ben returned from work that night with flowers. I am so thankful for a husband that is one step ahead of me on all this. He has endured all my out-loud, repetitive thinking and questioning, and helped me with kids, phone calls, and groceries. I am so blessed to have him. I went to bed knowing that I was joined by many others as I prayed for Dean, and that allowed me to truly get some rest.

2-20-10 Encouragement and Joy

I woke up Saturday morning to tons of encouraging replies to my email about Dean. It was so uplifting to be assured that people would remember us in prayer. Ben was at work, so I kept calling him to tell him of the sentiments I was receiving. Since I couldn't call any hospitals on the weekend, I tried to answer the emails I had received. In my email to my aunt, I told her of the options I had learned about. I explained the things I read about the Minimally Invasive Endoscopic-Assisted Craniosynostosis Surgery. It boasted two small incisions, a 1 hour surgery, 20% chance of a blood transfusion, one day in the hospital, and a helmet therapy (for approx. 9-12mths.) Minutes after sending my email, she called me. (She had been a surgical nurse before becoming a chiropractic doctor, so I value her opinion.) She told me that she thought John Hopkins was the best hospital in the country and that she personally knew people that had been treated there successfully. She also told me that it had been her experience as a nurse that many problems from surgery came from anesthetics and the duration of surgeries. This additional information was very encouraging to me, and made me feel even stronger about the minimally invasive surgery. My aunt also highly recommended craniosacral therapy, which brings me to God's next step in providing for us. After getting off the phone, I saw am email from a friend of mine who is an iridologist (another natural health care provider.) Her email included the name of a nearby craniosacral therapist (Ann) that specialized with infants. I thought I'd try calling her even though it was Saturday. Anne answered and went on to tell me that she had worked for several years in the neonatal unit at Geisinger Hospital. She said she wanted to see Dean right away. The appointment was an hour long and it consisted of a light massaging mostly on Dean's head. (I do not understand all of the benefits of craniosacral therapy, but it works with the body's connective tissue, and can soften the sutures in the scull among other benefits. I believe this treatment will allow Dean to be in the best possible health going into a surgery and will really help in the reshaping of his head after surgery. I wish I could better explain the therapy, but I am still learning about it myself. Here is a site that Anne recommend to explain some of it http://upledger.com/ ) I was so pleased to be able to start a treatment to help Dean and talk with so many people, that despite Dean's situation, I felt immense joy. Only a great God can give peace and joy in such a trial.

2-19-10 God plows the way

Ben and I woke up and began calling hospitals that offered pediatric neurosurgery. It became evident that the real issue would be insurance. Ben was trying to get through to someone at John Hopkins. With their reputation for being cutting-edge, we knew we would want to get their opinion. I searched for a hospital that would perform the minimally invasive endoscopic surgery. (For those of you who would like to see how this is done, I will insert 2 animated video links. The first, http://www.universityhealthsystem.com/index.php/us/results/video-gallery/viewvideo/115/craniosynososis/treatment-of-sagittal-synostosis.html will show the surgery concept. The second, will show the way the helmet therapy works http://www.universityhealthsystem.com/index.php/us/results/video-gallery/viewvideo/116/craniosynososis/sagittal-synostosis-helmet-therapy.html I will caution that although these are animations, the first still shows the removal of scull.) The closest hospital I found that did it was the Morgan Stanley Hospital in New York City. I called and made an appointment, but I had to call Geisinger Insurance and get clearance for out of network coverage approval for it to be affordable. Ben commented on how this is where the real nightmare would begin! I was ready for a fight; I wanted this surgery as an option for Dean. I spoke with a woman named Mary who actually listened to me explain the two surgeries and why I felt I needed to see someone who could do the minimally invasive. She asked me if I would see someone in the provided network if she could find a hospital that met our needs. She also said if she could not that she would recommend me for the out of network approval. I felt that God was already answering prayer and thanked her. Next, I tried getting in touch with a Craniosacral Therapist in Camp Hill, but I couldn't get a hold of anyone. Ben saw that I was overwhelmed and would never stop making calls so he got me out of the house for a few hours. When we came back, I had a message from Mary. I called her, and she told me that John Hopkins did the minimally invasive surgery and my insurance would cover them! Praise the Lord! What could have been frustrating and devastating suddenly became clear guidance from God. The office of the neurosurgeon at John Hopkins was closed until Monday, so I composed an email to the rest of our family and friends letting them know what was going on. We ended the day in prayer, thankful for the clarity of information and provision. We felt true peace that God was in total control.