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!

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!