tag:blogger.com,1999:blog-870903579100690772.post4040050638499467112..comments2023-03-29T07:44:32.412-04:00Comments on Praying for Baby Addy: Our Visit with the Vision TherapistJessicahttp://www.blogger.com/profile/08937251670991824001noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-870903579100690772.post-24678600694488845212021-01-28T18:58:09.911-05:002021-01-28T18:58:09.911-05:00Oh my, I just saw your comment today, sorry! I wil...Oh my, I just saw your comment today, sorry! I will see if I can get an update up sometime soon. :-pJessicahttps://www.blogger.com/profile/08937251670991824001noreply@blogger.comtag:blogger.com,1999:blog-870903579100690772.post-38373319891306402992021-01-28T18:56:38.592-05:002021-01-28T18:56:38.592-05:00I’m so glad to hear this! Glad your daughter was p...I’m so glad to hear this! Glad your daughter was promptly diagnosed and that she’s doing well. It’s so interesting how the technology and treatment for this condition has advanced over the years. This sounds a bit like the palate expander Addy currently has in her mouth! :)<br /><br />Glad to hear your daughter doesn’t seem to have any trouble with her eyes. That is the one main complication Addy still has remaining from her cranio experience. (I obviously forgot to post the update I mentioned before, oops!)<br /><br />Anyway, I appreciate you coming back to share this and update on your daughter. I hope the rest of her treatment goes smoothly!Jessicahttps://www.blogger.com/profile/08937251670991824001noreply@blogger.comtag:blogger.com,1999:blog-870903579100690772.post-44872944256093329342021-01-28T07:56:59.375-05:002021-01-28T07:56:59.375-05:00I am just seeing you responded! My daughter in fac...I am just seeing you responded! My daughter in fact does have the same craniosynostosis as your daughter. And she is two weeks post up. She has a distractor on her skull that we her parents turn twice a day for most likely 3 weeks and then it is removed! We had her surgery done at Children’s hospital of Philadelphia. She is already looking so different in only two weeks. She will be 6 months in a few weeks. We have seen an eye doctor as well. And as far as right now her eyes are ok. <br /><br />I wanted to say thank you. Honestly when I first noticed something off about my daughter April’s forehead and eye shape. I googled it. And your blog was on of the first things to come up. I sent Addys photo to my mom and husband convinced that it was what my daughter April had. I pushed her doctor to send me to a specialist. And she was diagnosed at 4 weeks with it once we went to CHOP. Because of that we were able to do the less invasive surgery with the distractor. All the doctors could not believe I noticed it this early and caught it. A big thank you goes to you and making this blog 10 years ago. I’ve now connected with a lot of cranio parents and found the organization cranio Care Bears. Thank you so much for putting this out there publicly. It has helped me and I’m sure helped many other parents. I’m happy to here Addy is doing well. alissahelenhttps://www.blogger.com/profile/13857600705545202843noreply@blogger.comtag:blogger.com,1999:blog-870903579100690772.post-27085330285767801942020-11-25T13:54:46.911-05:002020-11-25T13:54:46.911-05:00Hi, I'd love to have an update as well. Thank ...Hi, I'd love to have an update as well. Thank you for sharing your beautiful journey with Addy. 😊 Visit: www.isismarques.comhttps://www.blogger.com/profile/02970110900284549550noreply@blogger.comtag:blogger.com,1999:blog-870903579100690772.post-45554579579064480442020-09-03T23:40:26.625-04:002020-09-03T23:40:26.625-04:00Hi Alissa! I might post a more detailed update tom...Hi Alissa! I might post a more detailed update tomorrow, but overall Addy is healthy, happy, and doing well! She is now 10 years old, and as far as she is concerned, this whole experience with craniosynostosis is just another one of those stories we tell about when she was a baby. <br /><br />Congrats on your baby girl! I wish you well on your journey with this possible diagnosis. There is a group on Facebook with many parents who have gone through / are going through the same thing. Definitely recommend it as a resource for the questions and concerns I’m sure you have! It’s called “Cranio Kids- Craniosynostosis Support“. Blessings.Jessicahttps://www.blogger.com/profile/08937251670991824001noreply@blogger.comtag:blogger.com,1999:blog-870903579100690772.post-91189847946158465722020-09-03T18:42:12.063-04:002020-09-03T18:42:12.063-04:00Would love to know an update on Addy. My daughter ...Would love to know an update on Addy. My daughter is only a few weeks old but I believe she could have the same condition as Addy. They look so similar. alissahelenhttps://www.blogger.com/profile/13857600705545202843noreply@blogger.com