June 27, 2019

Happy 4 weeks old to our sweet little lamb! Little update.... This has been a month full of unknowns and then finally answers, but thankfully he has continued to defeat the odds! Daily he amazes us with his strength and will to thrive! He has recently found his voice and gets quite loud when he isn’t getting his way... it’s funny for now lol! He loves to eat and is gaining weight well! He’s at 6lbs 4.9oz already! We are still working on getting up to and staying at 85% or more of his feedings via bottle; then they can consider him ready to go home, currently he’s at 51%! We are enjoying all the cuddles we can, especially while he’s still so little (preemies are still big on him).!! We are ready for him to come home soon, when he decides he’s ready! We’re so thankful to God for allowing us such a precious gift and are doing our best to make his life the best we possibly can! Thank you for all of your support and prayers! ❤️

June 25, 2019

We got back the report for Dawson from Mayo Clinic this weekend and confirmed the diagnosis as - acrocephalosyndactyly type I (ACS1), otherwise known as “Apert Syndrome”. I will include medical details for those that have wanted to know! Apert syndrome is a rare genetic form of craniosynostosis — the early closing of one or more of the soft, fibrous seams between the skull bones (sutures). This early fusion prevents the skull from growing normally and affects the shape of the head and face. In addition, a varied number of fingers and toes are fused together (syndactyly). Dawson has all 10 digits under his fusions thankfully, so should be able to correct those for the most part. Apert syndrome is caused by a change (mutation) in a gene that affects how bones form. Apert syndrome is a birth abnormality caused by a mutation of the FGFR2 gene. The FGFR2 gene produces a protein called fibroblast growth factor receptor 2. This protein plays a key role in signaling bone cell development. Almost all cases of Apert syndrome result from new mutations in the gene, and occur in people with no history of the disorder in their family. Apert syndrome affects an estimated 1 in 165,000 to 200,000 births. (NORD) We have a long road ahead of us with surgeries etc, but are pretty confident that he will live a full, healthy and happy life! We’re so thankful for the doctors, nurse practitioners, nurses and other medical personnel that have been helping us so far! They have kept us encouraged and take such good care of our little lamb! So very thankful for the family and friends that have been helping us! We couldn’t have done this without you! Thank you for all of your thoughts and prayers! ❤️ #apert

June 20, 2019

We got moved to a new room late last night! Today, Dawson is 3 weeks old!! Seems like yesterday, but at the same time forever ago! Today we’re weaning oxygen levels to prep for home oxygen! He’s eating 34% of his feedings from a bottle as of this morning, which is super exciting! We weren’t sure he would be able to! We’re hoping all this means HOME in the near future! Possibly around due date, they’re hoping at least(3 weeks)! There are multiple surgeries ahead, but so far, we don’t see any reason we can’t be home in between those! We sure appreciate the help from Marque and Brandon this last weekend and then Laura and Jayden this week! Having someone help keep the other kids and the house going makes it possible for me to be at the hospital with him so much! And a big thank you to those that are helping with other needs even though you can’t drop by! We so appreciate all the support and prayers going up! ❤️