12/13/2010 Catching up

Please forgive me for grossly neglecting my updates. Life is full. There are several significant events that have happened since my last post including: Dean's 6 month follow-up, his first birthday, and a CAT scan. The follow-up at John's Hopkins was a bit disappointing. We didn't receive any bad news, but the disappointment was that there was really no news at all. Our Plastic surgeon, Dr. Simmons moved onto another hospital (hopefully we won't need him anymore, but still a loss for JH.) So, we knew we would see someone new from the plastics team, but thought we would still talk with Dr. Ahn our neurosurgeon. When we arrived we found out that Dr. Ahn was in emergency surgery. A follow-up is not very reassuring when you first have to update the new doctor you are meeting. Measurements were taken and all seemed to be alright, but his head has not grown any wider which is something they will watch for. Over all, there wasn't really any clear positive or negatives. While in the waiting room, I spoke with another mother whose daughter was 1 year post surgery. Dean's head pulls in at the temples still and that was a concern I had. She told me that her daughter's head shape had been the same and that those areas just popped out as she grew. That was more reassuring than anything the doctors told me. Another interesting thing to note about our visit. Dean, normally content and happy, was a disaster that day. I have no doubt that he knew where we were and didn't like it. I never saw him so fussy. So much for hoping that he would forget the whole thing. In October, we also celebrated Dean's first birthday. We don't usually do much for first birthdays, but we wanted to celebrate God's provision for Dean's long first year. We had a large family celebration, and asked that guests bring a donation to the Children's House and CAPPS kids instead of gifts- a chance for us to thank those who helped us this past year. We also participated in a balloon release to increase awareness of craniosynostosis. Many friends and family (I posted a photo of my Aunt in KY who participated) released balloons for this- if you find one, let us know! Dean's party was one of the highlights of our year! I recently received a routine order for a CAT scan. Dean's first attempt at this was terrible. He fussed and squirmed; there was no way he was going to lie still for the scan. I called the Pediatrician, and he prescribed a one-time dose of Chloral Hydrate to make him sleepy. It worked like a charm! He slept right through his scan the next time, and we are now waiting for the results. Praise the Lord! I am hoping that the results of the scan will fill in the blanks of the follow-up. It will give me extra peace of mind to have Dr. Ahn get a clear look at what is going on. I will post the results of his scan when I get them or at least after Christmas when the holiday rush dies down. Thanks to everyone who has continued to read this and pray. I keep meeting parents of cranio kids who tell me that this is helpful to them, so I will let you know how Dean progresses!

7-20-10 Back to Routine

I wanted to write a update for weeks now, but Dean just recovered so quickly that I got caught up in the hustle and bustle of life and just didn't get around to it. Dean is now 9 months old and 3 months post surgery. If you didn't know that he had the surgery, you would probably never notice his scar; it is healing so well. His blond hair has covered up most of the incision. Right now his worst scars are the wrist cuts that were made to get access to his artery for the transplant (not a normal part of the surgery if you remember.) Surgery slowed him down for about three weeks, but by week four he was rolling around on our hardwood floor with ease and comfort. He is now crawling around the house and trying to pull himself up to stand. He started doing these things a few weeks later than my older two did, but if you take into account the week he was in the hospital and the 3 weeks after that he was sore and not very mobile, he is right on track. I took him to my naturalist and he recommended that I treat the incision with a detoxifying mud to purge any impurities that might keep him from healing completely. It was messy, but Dean didn't mind. Otherwise, he found no complications or setbacks from the surgery. I am also taking him for craniolsachral therapy again, and that is going well. I can tell it is helping to release pressure and tightness from his head and neck.

It is really like nothing ever happened to him. We are so thankful for our healthy little boy. Kara, my oldest daughter, introduces him to people as "Dean Alden the Brave" and we replace the word "big" for "brave" when we play "How brave is Dean?...So Brave! He lifts his arms in the air and smiles- so cute! We are looking forward to his 6 month post-op appointment at Johns Hopkins and first birthday in October. It is just amazing how quickly the days are flying by!

I have had a number of parents who are or have dealt with craniosynostosis contact me. I am happy to know them and pray for their kids. A few of them really jumped through some hoops to find my contact info. I can be messaged through facebook and I am also a member of the CAPPSKIDS facebook page.

Slideshow of Dean's Surgery

Create your own free photo slideshow

5-6-10 Positive Post-op Appointments

I waited to post an update on Dean's post-op appointment at Johns Hopkins because he had his wellness check-up with the pediatrician today, and I thought I'd include the results from both. Tuesday, we saw both Dr. Ahn and Dr. Simmons. They were very happy with Dean's progress! He is healing fast and looks great. They told us that he is doing exceptionally well. It is so amazing how much he has healed; his surgery was just two weeks ago! Dr. Ahn measured Dean's head. When you divide the width of the head by the length the percentage of the average head shape should be 80%. Dean's original percentage was 73%; he is now at 79%. Dr Simmons will be keeping an eye on his forehead. It should become less prominent as his head now grows evenly. This is the big prayer concern from here on out. If his forehead shape would not improve at all it might be recommended that we correct it with surgery in the future. We obviously do not want to do that unless it is absolutely necessary. Dr. Simmons seems to be very understanding about our feelings and doesn't think we should be too concerned. Both doctors are very pleased with the results from the surgery and think that it was probably his last. In four more weeks, Dean will be able to continue his cranio sachral therapy and I think that will help to gently guide his head shape as he grows.

The Pediatrician had glowing reports for Dean's overall health as well. Dean weighs just under 20lbs which is in the 85 percentile, and he is 29 inches long which is in the 95 percentile. I am so thankful that his need for surgery has not affected his health and development. Dean took his last dose of oxycodone Friday night, and had his last dose of Tylenol Saturday evening. A quick note for the moms of kids with CS surgeries to come that have contacted me and are reading my blog: I do not think a breastfed baby needs colace! The pediatric team at the hospital gave him a stool softener to counter any effects that the oxycodone and vitamin with iron might have on his digestive system, but I stopped giving him that the first day be came home. What a disaster! He ruined several outfits. It was obviously not necessary. I am happy to have my baby drug free once again.

The Lord has been so good to Dean and our family through this process. I can not praise Him enough for restoring my son's health so quickly. Thank you all for your prayers. They have proven to be the powerful answer to Dean's every need. Dean next post-op appointment is in October and I trust that it will be just as positive!

4-28-10 One week anniversary

I am relieved that it has already been a week since Dean's surgery. Praise the Lord! Dean is doing well, but he has been very high-maintenance. I know he is still in a good deal of pain. He winces every time I lay him down. He also doesn't like to turn his head much when lying down. He still has some swelling, but it has been amazing to see his head change a little everyday as the swelling goes down. He still has some mushy spots in the back of his head where there is a lot of fluid. I am sure that is causing some of his pain. I am very pleased, however, with how nice his head is shaped. I didn't think my little guy could get any cuter, but his head is so nice and round! He is very clingy to me right now. It seems to be get better, but Monday I don't think I put him down for more than a hour or so all put together. I guess I can understand why he might be having separation anxiety after everything he has been through. He is happy, but he just wants mommy to hold him constantly. I am very thankful that my grandmother has been staying with us to help with the girls. It has been noisy here lately. If Dean and I were sleeping better I don't think I would mind as much, but by the end of the day I feel pretty frazzled! When I look at his little head stitched up like a baseball, I still can't believe I let anyone do that to my baby. Please continue to pray for his recovery. I am hoping that as the pain lessens he will fall back into his regular sleep and play routine. I am happy for the extra cuddle time, but I need to be able to get him to nap in his crib again. Dean's follow-up appointment with his surgeons is Tuesday. I will be sure to tell you all how that goes. Thank you for your prayers!

4-25-10 Home!

I will make this brief because we have had a lot of long days, and I am ready to crawl into my own bed again. We are home! Just as I said in my post yesterday, everything I ask prayer for has been answered right away. Dean's hemoglobin level had risen by morning, his vitals were all good, and he has been up and active all day. He is turning right back into his regular self- lots of smiles and cooing! We aren't really supposed to cover his incision so you can imagine the looks we got as we left the hospital. He looks a bit like a baby Frankenstein with his zigzagged stitches. Kara and Evy were a bit shocked when they saw him too. Evy cried, and Kara is really concerned about him not having hair. She seems to think that getting his hair back with heal him. They are both pretty used to it already though. Kara asked a lot of questions. I think ultimately she was worried that she might need a surgery too, but she seemed content when I told her that only Dean needed that surgery and he was already getting better. We will have an appointment at Johns Hopkins at the end of the week with Dr. Simmons and Dr. Ahn. I will update when there is significant news or requests to report now that we are home. I think I will have my hands full because Dean is still in a considerable amount of pain and requires a lot of extra care. We are so thankful to be at home and in recovery stretch. Thank you all so much for your incredible support. Please keep praying for a fast recovery. My little guy still has a lot of pain and swelling. I trust God that a good sleep at home and a new day will bring him added comfort.

4-24-10 Improving

I will just have to keep posting all of my prayer concerns right away because as soon as I go back to see Dean after posting an update, I find that God has already answered my prayer! This morning I walked into his room and he smiled! It was such a relief. His smiles were few and far in between today, but I was just so glad to see that little glimmer of his happy personality coming back. He made some great headway (no pun intended) today. Dr. Simmons took his drain tube out, and that meant that he really didn't need any more IV pain killers so they took those too. His hemoglobin levels are low which is due to the blood that drained for two days from his incision. With the drain removed, that should hold and eventually start to go back up. If it drops any more they may give him a transfusion; so we are praying that that won't be necessary. His head is still very sore. He does not like to turn his head at all. However, he has been sitting up (we hold him of course,) and that seems very comfortable for him. I think that the back of his head is especially sensitive because he cries for a moment each time you lay him down. It looks like we will be able to go home tomorrow if things continue to progress well. Ben and I have been very pleased with all of the wonderful nurses tending to Dean. They are really caring for him well. God's guidance and provision for him has been made so clear. We don't regret our choice in hospital, doctors, or treatments. Of course that is because God chose them and has coordinated everything so perfectly for us. I really don't think this could have gone much smoother. Please pray that Dean's pain will continue to diminish, that his blood levels will remain steady, and that his intake and output levels (drinks and diapers) will be high enough for him to be released! We appreciate all of the prayer support so much.

4-23-10 Slow and steady

It seems like we have been here for a week already. Everyday has been so long that it is hard to believe we are only two days out of surgery. It is great to be on this side, but I am anxious to see Dean smile again. Medically he is progressing well. His incision is draining less, he needs less medication, he is awake more often, and he is eating a little more frequently. I have only held him twice because it is too painful for him to be moved. You can tell he is very uncomfortable and that is very painful for him. He lies very still and does not smile, even when he is looking at his toys. If you know Dean, you know that he is usually always smiling. His expression makes me think he might be a little mad at me. I will be happy when he is better and forgets all of this. His swelling is going down and his eyes never swelled shut, and that is a wonderful answer to prayer for me as much as him. I am now praying for his pain to get better so that I can hold and nurse him without him crying out. We also need his draining to stop before we can come home. I want to include some photos this time. Some are not very pretty, but I think it will help people to know what to expect when we get home. When I have access to my computer again, I will make more available. He is so brave.

Ben and I are doing well. The hospital and Children's House have made us very comfortable. We are meeting many other families. It is humbling to be in a children's hospital. We feel so blessed. Even with everything Dean is going through, we definitely are thankful for the situation God has given us to deal with. Many have it so much worse. Our list of precious children who need our prayers grows everyday!

4-22-10 Recovering

Dean is doing very well today. When we got to the PICU, he was waking up a little and drinking from a bottle. They were able to remove most of his tubes by noon and take him to the pediatric recovery ward. He still has a tube to drain his incision, an IV line in his ankle, and various monitors. They just removed his catheter this afternoon. He is taking pain medication orally and getting fentnyl through push button IV when needed. He is definitely very uncomfortable. We have not held him yet because we can tell he is much happier to lie still. He is very groggy and drifts in and out. He is opening his eyes and alert in between which is nice, but mostly he is resting. Tomorrow will probably be very different. We expect him to be more alert, but possibly more fussy. We have also been told that he may have more swelling from all of the IV fluids. I am looking forward to being able to hold and nurse him again soon. We are told that he will probably be released on Saturday, but that is not certain yet. It seems like we have a long way to go yet for that, but I think he will be making progress in leaps and bounds in the next 24 hours. We are very thankful for how well he is doing. The doctors all seem to think he right where he should be and in same ways better. God is good. On a lighter note... I found out that Dean didn't need much blood for his surgery, but he did use part of the unit I donated. The fainting was all worth it! The doctors said we were the first parents they ever had to direct donate, and they were amused when we told them about our experience with the red cross.

4-21-10 Praise the Lord!

Minutes after my last update, I received a call saying that Dr. Ahn was finished cutting the scull and was handing things over to Dr. Simmons for the reconstruction and closing. Ben and I headed back to the waiting room and figured we would have a few hours to wait for Dean to be finished. Instead when we arrived, we were told that everything went well and he was being prepared to be moved to the PICU. It was over! Dr. Ahn told us that things went very quickly because after they got all of the lines for anesthesia in place everything else went perfectly. There wasn't a single problem removing the scull- not a scratch! Dr. Simmons told us that the reconstruction went perfectly too. His scull was thin which made it easier to manipulate. They were both very pleased with how he was doing. They may not know that God was guiding their hands, but I do! We just spent the last few hours with him. They have already taken his breathing tube out and he is conscious but has kept his eyes closed. He is not very swollen at all, which is a relief to me. They said he might be a little more swollen by morning due to laying down, but he still looks like my baby and that is comforting. He has a line draining fluid from the incision site, and his head is wrapped up in a little cloth helmet, but he is aware of our presence and moving his arms and legs. It feels so good to be finished with the surgery. We know Dean was in God's loving and perfect care all day. I am so grateful for all of the answered prayer! Since I am not able to feed or hold him tonight, I will be sleeping at the Children's House. I trust that I will sleep well tonight, and I need to because I will be sleeping bedside tomorrow night. Thank you to everyone who contacted us today. The calls of encouragement started at 6am, and emails, calls, and even a surprise visit (from my aunt and cousin) continued throughout the day. We can not tell everyone how much this means to us. I am especially thankful for the strength and support from Ben today. We look forward to tomorrow, and pray for Dean to recover quickly and completely. I am confident that God will bring Dean home strong and safe!

4-21-10 Waiting and Praying

It is almost 4pm, and I wish that I was writing to say that Dean's surgery is over, but it actually has just started. Everything went beautifully this morning. Dean nursed at 2am (the latest possible time before surgery) and slept well. We got to the hospital at 6am as planned. We put him in his little hospital gown and actually went with him into the operating room to be with him until he fell asleep. They used a little gas mask and he drifted off with hardly any fussing at all. We were told that it would take about two hours for anesthesia and preparing him for the incision. The anesthesiologists wanted to put a line in at his neck, a breathing tube, and another line in a main artery. Unfortunately, about three hours later we were called up to the waiting room (which was packed, so we were roaming around waiting for them to call our cell phone.) We were told they had tried getting access to his artery in his arm, leg, and groin but were not able to get to one. We signed a consent for a mini surgery that would allow them to do a cut-in for direct access to the artery. They, of course, have to tell you all of the risks involved, the worst case being loss-of-limb. So, you can imagine that we were concerned and praying hard for our little guy! At 3pm, they told us they had everything ready, he was stable, and they were going to begin the surgery. I just received a call from Dr. Simmons (the plastic surgeon) saying that the incision has been made. We expect to talk with Dr. Ahn (neurosurgeon) around 4:30 when he has completed removing his scull. Please keep praying; we still have quite a few more hours to go. We are thankful things are finally moving along and that he is doing well. I was told that I should expect his eyes to be swollen shut for 48 hours or more due to the length of time he is spending face down; so, I am trying to prepare myself for that. I am so thankful for the Children's House! We checked in at 2pm and I have computers available to post my updates. When things are finished and we return tonight I will post again. Thank you all for your continued praying! PS: Please forgive any errors in my postings, I don't have time to proof read!

4-20-10 Prepared for the Big Day

I know I don't have to ask; so I will start by thanking everyone, in advance, for your prayers tomorrow. Ben and I are so thankful for all of you who have supported our family with your prayers, emails, cards, generosity, and encouragement! I am overwhelmed with emotion when I think of the love that has been shown to us since we found out about Dean's need for neurosurgery. I pray every night that the Lord will bless all of you who have prayed so faithfully for our family. God has had a clear hand in all of the preparations for this surgery. Yesterday, I received a call from the Children's House (which is like a Ronald McDonald house) and we have reservations to stay with them already. I was told when I first called that we would be put on a waiting list and might not be called until the day of surgery. This will greatly reduce the cost of our stay, and is just another clear answer to prayer. It is so evident to me that God has taken care of every detail so far that I have no doubt that he will continue to care for Dean tomorrow during his surgery. I will try to update the blog along the way tomorrow, but if that is not possible, I will at least make an entry at the end of surgery and each evening after with our progress. We will be going to Harrisburg in a few hours, and we will spend the night with my grandmother. We plan on leaving at 4:30 am. Dean gets prepped for surgery at 6, and the surgery begins at 7:30 (we expect it to last 7-10 hours.) Whatever the outcome tomorrow, Ben and I are thankful for Dean and everything that God has taught us over the past two months!

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

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.

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.