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.

2-18-10 Coming home with the news

Since my husband Ben had heard everything at the appointment over the phone (while returning from a meeting at work that kept him from being there,) I was relieved to come home and just be upset for a while. I was not ready to tell everyone the news. Since I never believed anything would come of the appointment with the neurologist, I hadn't even told many people that we were going. Now it would be a total shock. Ben and I made phone calls to our parents to let them know. We started researching on the computer. We researched his condition, similar conditions, treatment options, before and after photos, hospitals, testimonials, etc. It was late in the afternoon so we knew we would have to wait to make any calls for additional opinions. One bit of information that stuck out, was a minimally invasive surgery that we became interested in getting more information about. Several family members also quickly sent me links to this procedure; so, I decided to have one of our "second opinions" done by someone who could do that surgery. I also phoned my naturalist who told me he would call me the next morning with information about a Craniosacral Therapist. He told me that it would be beneficial for me to get advice from someone in that field. Research became exhausting, I decided that it was time to devote my attention to the only real way I could prepare- prayer. I remembered Ben's grandmother telling me about how she had recently cried out to the Lord (literally) and how He amazed her with His answer. I had been praying since I got into the elevator at the hospital, but this would definitely be a time for crying out to God! I spent that evening on my knees putting Dean in the only safe place I knew of...God's Hands.

Introduction- a quick background to our family situation

They call him Dean Alden the Brave, And one day all history will rave, He's valiant and daring, And noble and caring No wonder girls curtsy and wave. He's Dean, Dean Alden the Brave. That is the song I have been singing to my son since we chose his name in my third trimester. Sure, I essentially stole it from a Muppet movie, but I changed some words and made it work. Dean is my third child; he has two older sisters. All three of my kids are spaced about 2 years apart. I felt confident Dean would have the healthiest start in life out of my three. I knew absolutely nothing about health or nutrition when I became pregnant with my first, and (I hate to even admit this) quickly gained 60lbs eating everything I craved. Late in my second pregnancy (which I was more cautious about after working hard to loose all that weight,) I started getting reoccurring hives which ultimately led me to a nutritionist/natural health care provider. After getting rid of several health problems and food allergies, I began learning about correct nutrition, natural supplements, and alternative therapies. I was definitely in the best health of my life during my third pregnancy with Dean. He was born on October 16th, 2009. Strong, healthy, and alert, Dean delighted our family by sleeping well and crying only when hungry or wet. I had few concerns, but asked one of the four pediatricians at his first wellness check-up (at 4 weeks- I was off track due to my girls being sick for a few days) about the ridge I could feel on the back of his head. The doctor did not seem very concerned, but said she would make a note of it and keep an eye on it. She reassured me that every head shape is just different. The next time we went back, Dean was 3 months old. This time we saw a different doctor within the practice. He said he was concerned about what I had noticed and wanted a neurologist to have a look at Dean. That appointment was scheduled for 2/18/10. I was slightly irritated that we had to go. I figured this was all prompted by me, and that the neurologist would think I was just an anxious mom worried about a funny shaped head. I wish!

It only took a minute of looking at my baby, while I rattled on about the process that brought me there in the first place, for the neurologist to tell me that he was confident that Dean had Sagittal Craniosynostosis (CS), a premature fusion of the scull. It is amazing that between the rising temperature in the room and the sudden and intense nausea, that I could even process what he told me after that. In fact, I am sure my recollection of the details are not 100%. He said Dean would require a surgery to allow the brain to grow properly. He explained that without surgery, the brain would not be able to grow wide and would cause a prominent or even bulbous forehead. In addition to social issues that would arise from this distortion, Dean could also have learning disabilities and even blindness if the brain was unable to grow properly. The neurologist showed me photos, and started talking about what a surgery would entail. My husband, who was listening via speaker phone on my cell, asked most of the important questions. I felt pretty stuck on, "you are not cutting my baby's scull!" I was told that 99% of the time this surgery went without any complication. The 1% problem was usually just an infection easily fixed with an antibiotic. That probably is as good as it gets for safety in surgeries, but after going natural and holistic in my health care, I was troubled by anything foreign disturbing my baby's body. The other surgery details were as follows: an "s" curved incision from ear to ear, cutting and re-piecing the scull in the desired shape, 7 hours duration for the procedure, 90% chance need for a blood transfusion, and a 3 day hospital stay. I was told that I needed to do this between 6 and 9 months of age. I agreed to get the ball rolling with that time line in mind, but left the hosptial unsure of anything.