3-24-10 Red Cross Comedy

Well, I feel confident that Ben and I successfully provided the adequate amount of entertainment for the Red Cross volunteers today in Mifflinburg. We are both the correct blood type to donate for Dean, and we felt that with a 90% chance of him needing a blood transfusion that we would prefer him to have the closest possible match available. Ben was in his regular jovial mood and proceeded to heckle every nurse in site while I rolled my eyes and tried not to think about blood. I have only donated twice before (also direct donations,) and it didn't go well either time. The first time, my vein burst which feels about as bad as it sounds. And the second time, I gave my pint in a record setting 4 minutes and spent the following hour turning green and having to lie down. I was just praying that I would be able give for Dean. I finished all the preliminary questions faster than Ben, but that was mostly because he asked the nurse questions about the questions. Fortunately, his nurse had a sense of humor! I personally don't like to joke around with the person who will soon be jabbing me with a needle. I thought things were going pretty well because Ben finished giving blood before me which meant I was giving at a normal pace. When we were both finished, Ben went to make friends with the volunteers at the cookie table while I stayed lying down feeling lightheaded. After a cool compress and about 10 minutes, I joined Ben; but I soon found myself feeling very sick. I was quickly moved to a rolling chair where I proceeded to pass out. I woke up to several people yelling at me, and Ben looked very serious for the first time of the evening. I was told, that in addition to losing all my color, I went completely stiff, my legs flew into the air, and my eyes rolled around like crazy. I was also told (while I was breathing into a paper bag,) that I was the only person to faint all day. Great. When we finally left after only two and a half hours, Ben knew the names, birth dates, and ages of all the children of a half dozen Red Cross volunteers; and I was embarrassed. I felt kind of silly about fainting too! All said and done, I am thankful that we were both able to give blood for Dean. God keeps providing.

3-16-10 Dean's Therapy

I am happy to have Dean's surgery scheduled; it gives me a timeline to work with. It feels good to be planning and preparing rather than waiting.The email with information about his surgery contained mostly directions and formalities. I am going to try to schedule a tour of the children's hospital when we go for his pre-op appointment so I 'll know what to expect for sleeping accommodations and things available to keep me occupied while I'm waiting for Dean to recover. I am also in the process of getting paperwork authorized for Ben and I to direct donate blood for his surgery. Ben is unsure of his blood type, but I am O negative (the universal donor) and should be able to provide for his transfusion. Direct donating isn't necessary, but I feel better about having mine available. I have tried donating blood before and it has not gone well so I would appreciate your prayers since Dean's chance of needing a transfusion is 90%. In the meantime, Dean has been continuing to see Ann, his craniosacral therapist, each week. He really enjoys his therapy, and I am amazed at the improvements I see after every visit. Anne has been relieving the pressure caused by the overlapping sutures and uneven head growth. Some of the overlapping has actually lessened (you can feel it) at the base of his sagittal suture. He is also having tight areas in his neck release allowing him to improve his motors skills quickly. In one session he went from having limited neck support to controlling his head easily and holding his head high and strong when on his tummy. He is like a new baby every time we come home. He now roles back and forth at will and has improved fine motor skill (grasps and holds objects with both hands.) My mom was able to go with me to his last appointment and saw some of his rapid improvements. I am so thankful that the Lord made this known to us right away. I think this would be a great boon to any child, but I am sure that it is saving Dean from potential set backs that could be caused by his unusual circumstances. Craniosacral therapy can also improve the immune system 30-40%; I am very thankful for that as we look toward several days in a hospital. An added bonus...Dean always sleeps very well after therapy. And so do I!

3-10-10 Surgery Dates

Yesterday, I received a call from Dr. Ahn's (neurosurgeon at John Hopkins) office. They gave me Dean's surgery dates. I would have posted yesterday, but I was told that I would soon get an email with additional information, and I was hoping to include it with the dates. I am still waiting for the email , so I will just provide that information later. Dean is scheduled to have a pre-op appointment on April 13 at 1:00. They will do a physical and lab work that day. His surgery will be April 21. We will arrive at 6am and the surgery will begin at 7am. The surgery will take most of the day (approx. 7 hours.) It will be a long, emotional day. I was watching him sleep yesterday; he is so beautiful. It is hard to imagine. I will be relieved to be on the other side. Praise the Lord that we don't have to wait very long!

3-7-10 Late update

I apologize for posting this later than I had planned, but the weekend was even busier than I had expected. Dean had an appointment on Thursday in Camp Hill with Beth, the caniosachral therapist that my nutritionist had referred me to. She was very thorough. She asked me more questions about my pregnancy, delivery, and Dean's development over the past four months than anyone. She has seen a lot of infants with craniosynostosis, so I was interested in her opinion on Dean's situation. She said she was very happy about three main things: Dean's weight, his vision, and the soft spot that remains near his forehead (anterior fontanelle). She said she sees a lot of babies that seem grey and underweight; Dean definitely has no problem there! She also said that she often sees problems with vision control in some babies, but Dean has no signs of any issues there either. Beth said that if Dean did not have the open soft spot in the front that he would probably need a surgery immediately because the brain would have no where to grow, but since he does we should be able to safely wait for the surgery date that John Hopkins gives us. Beth treated Dean almost exactly the way Ann does, so I will continue to go to Anne for regular therapy since she is closer. I was glad to get one more opinion on our situation. God has provided perfect peace of mind through all of the consistent advice we are receiving from each and every professional! In fact, I was checking a forum for parents of kids with CS (http://www.cappskids.org/) and everyone who had gone to John Hopkins loved the surgeons that we met with, and had nothing but positive reports about the care they received there. Ben and I have decided that we are going to have them perform Dean's surgery. I am just waiting for them to contact us with the surgery dates.

Dean had a lot of extra hugs, kisses, and prayers today. All of his grandparents and great-grandparents joined us as we dedicated him to the Lord in church. It was very important to us to renew our commitment as parents to ask God for His guidance and blessings as we continue to raise all three of our precious children. Our kids are all very blessed to have Christian Grandparents who lift them up in prayer and celebrate occasions like today. After lunch we took photos that included four generations! I am so thankful that my children have the benefits of a Christian heritage. Dean' s dedication was a great excuse to enjoy our little cutie with our loved ones; but most importantly, it was a serious reminder that Ben and I have been made stewards, not owners of our children.

"Everything in life which we commit to God is really safe." - A. W. Tozer

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.)