4-5-2011 One Year Post-Op

Last week, we took Dean back to John's Hopkins for his one year post-op cranial-facial clinic

appointment. The past two times that we went back to Baltimore for post-op appointments, Dean has been very upset. I'm sure it is no coincidence that my normally happy little man gets upset every time we return to the hospital where he had his surgery. I don't know how he knows, but he does. So this time, we decided to take his sisters along and make a day of it.

During the appointment, Dean still fussed, but all of the news from Dr. Ahn was great. He showed us the images from Dean's CAT Scan. He explained to us that he looks for two things- 1) the bone has fused and 2) there is space for the brain to grow. Both were able to be seen from the scan, and both were just as they should be. No more surgery for Dean! God has been so faithful to us! Dr. Ahn also took measurements, and told us that traditionally the head shape at eighteen months of age (Dean's current age) is essentially the shape we can expect his head to remain. We certainly have no problem with his head shape- he is a handsome guy. We will go back to see Dr. Ahn next year to keep measurements updated, but otherwise it looks like Dean doesn't need him anymore.

Afterwards, we took all three kids to the aquarium to make the trip (an almost three hour drive) a fun day filled with good memories for Dean. I included one photo from the day with Dean sportin' his new short hair cut that shows a little bit of what is left of his scar. I also can't resist posting a picture of him (pre-haircut) in his "Chicks dig scars" T-shirt.

Thanks so much for all of the prayers for our family!

1-9-11 CT Results

It took a very long time to get the results of Dean's CT scan partly due to the holiday, but also because the radiology department at the local hospital neglected to send them to Dr. Ahn. But happily, the scan showed that he is healing fine! Dr. Ahn said that everything looked great in the scan. I asked if there were any soft-spots left behind where the dissolvable plates had been (this is a concern because if the scull does not re-fuse then bone grafting surgery must take place.) He said something to the affect of, " I don't know what you're feeding him, but all of the bones have already fused back together!" I think I'll give God the credit for that rather than the large quantities of baked beans that Dean loves to eat. So, this has of course been a huge relief to me! At his last post-op visit the measurements showed that his head had not grown any wider, and Dr. Ahn said we would measure that again at his 1 year follow-up in April. My prayer is that this last issue will also be resolved with God's help, and that we are able to put all this behind us. Dean is still going to therapy which I hope will continue to speed up his total recovery and healing. Thank you for your continued prayers! It is so good to be at this point of recovery.

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

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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!