4-13-10 Pre-op Appointment

We have completed Dean's pre-op work today and are one step closer to surgery and getting all this behind us! We headed down to John Hopkins for our 1pm appointment. I've got to hand it to them, although we were there until 4 o'clock, we were hardly ever sitting in a waiting room. When we arrived, we filled out some paperwork and grabbed a quick bite to eat in the cafeteria. As soon as we returned, Dean had his vital signs checked by a nurse. We were then seen by a physicians assistant who discussed the anesthesia process. John Hopkins has pediatric anesthesiologists which is comforting because infants have smaller airways and different concerns than adults. It is nice to know that his care will be specialized for his age in every area the day of his surgery. He was given a physical to determine if he was healthy enough to proceed with everything as planned. I told the physician that he was sick last week (a respiratory problem could affect the safety of anesthesia,) but she couldn't hear anything in his lungs or see any other problematic symptoms so he was cleared for surgery. Praise the Lord! Dean was his happy quiet self during the entire process until we went for his lab work. He was really tired and hungry and I am sure that that made the blood work even worse for him. Fortunately, they were able to get all of the blood they needed quickly before anyone's eardrums were permanently damaged. I didn't expect him to enjoy giving blood (he must get that from his mommy!) My little trooper fell asleep immediately afterward and slept the whole way home! It seemed like all the preparation for his surgery went very well. I found out a little more about what to expect the morning of his surgery (April 21st.) We will be staying at my grandmother's home the night before so we will only have an hour and a half drive. We could stay in Baltimore, but I can't nurse Dean after 2am, so I decided that it would be better to travel in the morning since he sleeps well when he is in the car. I don't want to risk him waking up in a hotel at 5am and not being able to feed him. When we arrive, we will be able to stay with as he is dressed in his little hospital gown and his vitals are taken. Then they will put him to sleep with gas, and that is when we leave. All the poking and prodding will happen after he falls asleep gently which is as comforting to me as I am sure it will be to him. We can not stay with him the first night when he is in the NICU, so we have put in a request to stay at the Children's House and Ronald McDonald house; we are waiting for an opening from one or the other. Please pray that we get a call soon so that we can be sure that the necessary accommodations are in place for that night. The day after surgery he should be moved to the Children's Hospital where I will be able to stay with him. If all goes well, we should be back home on Friday or Saturday. I will try to keep everyone updated via my blog during the process, but since I may be limited, you may want to become a "follower" so that you are alerted to my postings or check in frequently. Wednesday will be a long day for us, but Ben and I will be glad to be on the other side of this. We still have a great peace that God is guiding us every step of the way. His hand has been so evident in every part of the process so far that we know we can trust Him to take care of Dean next week. Thank you all so much for your encouragement and support! Also: Those who read this yet tonight, please pray for safety for Ben tonight. He is working night shift and really didn't sleep at all today so that he could take us today! Thanks!

4-9-10 Getting Better

I just wanted to give a quick update on Dean's health. He has improved a lot over the past two days! If the little guy could blow his nose I don't think you would be able to tell that he is sick. He just has some left over congestion to get out of his head. He slept through the night last night (something the congestion was keeping him from earlier this week.) Thank you for your prayers! I feel confident that he will be well for his pre-op appointment on Tuesday.

4-6-10 Pray for Good Health

Dean became ill last week. Congestion and coughing had been getting passed around in our family, but I wasn't really concerned because it only seemed to last a few days for each of us. However, Dean just couldn't seem to get completely well and today he started getting worse. Normally, I just let these things run their course, but with his pre-op appointment next week I couldn't take any chances. I took him to the naturalist I see and he is being treated hourly for a virus. I actually think he seems to be getting better already, but please pray that he is 100 % for his appointment on Tuesday. Otherwise, things are moving along well. He is growing so fast! I weighed him yesterday and he was 20lbs! I have already gotten out his 12 month clothes and they fit well. Too well! He didn't even wear half of his 6-9 month clothing before he grew out of it. He is a big boy. I appreciate your prayers for him this week. I trust God will heal him quickly; He has taken care of everything else so far. Even though he is sick, Dean is still as smiley and happy as ever!

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