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.
Posts
Thanks for posting the update. Miracles do happen, and Dean is proof of that!
ReplyDeleteOh my gosh, I cannot tell you how inspiring your story has been too me! Your faith, love, and willingness to share has been such a blessing! I am so glad to see Dean and hear of his journey. I found your blog about 2 1/2 weeks after his procedure throught the Capps kids boards but have had terrible luck getting any response on the site to get help with changing my acct. (somehow I registered as under the age limit and am limited on what I can do). Anyhow, I would love to email/PM you about the process with Dean I think I will try through facebook. My son, Hoss, will be going through the procedure on August 25th and will be 6 1/2 months. I have created a blog as well to update family and friends and too also help others dealing with Sagittal Craniosynotosis. It has been such a blessing to find this blog, to watch and hear yours and Deans journey. Thank you for sharing and I am so so glad to see Dean's smiling face and to hear all it so awesome!
ReplyDelete-Angela
Thank you, Angela. Let me know if you have any trouble finding me on facebook. I will give you my personal email there. I will add Hoss to my prayer list. I hope things go as well for him as they did for Dean.
ReplyDeleteI also wanted to thank you for your blog and slideshow! Although it has been a few years now for you, I am just now going through all of this with my 9.5 month old son, Silas. We will be having his CT scan a week from today. If you are up to it, I would love to ask you some specific questions as well as hear an update about Dean. Even if I don't hear from you, this blog has provided such relief for me and soothing to this mama's anxious heart. Thank you!
ReplyDeleteMy email is tbwilhelm@verizon.net if you want to talk :)
ReplyDelete