Elwyn was born with a rare condition called Apert Syndrome that requires many surgeries.
19/05/2025
Today we had 2 appointments in Syracuse one with his orthopedic surgeon and the other with his GI doctor. His orthopedic surgeon wants to go in and cut down some of the fatty skin in between his thumb and other fingers so he can use his thumb. When we went to his GI doctor they want us continue with what we were doing. Since Elwyn’s last gi appointment he has gained an average 17 grams per day Normally kids gain 4-5 grams per day !!!! We’ve got him up to 21lb 5 oz!!!!
24/03/2025
Elwyn today had 2 appointments in Syracuse. The first appointment was his ophthalmologist. They examined his eyes even with his screaming the whole time. They say his eyes look great and he doesn’t see any nerve damage. We have to go back in 6 months. The second appointment was with his ENT doctor. He saw that Elwyn has a build up of fluid in his ears and he decided tubes for his ears would be best. We are just waiting for scheduling to have them set up time to have that done. His tubes will be placed sometime next month. With this we are hoping his hearing improves and can help him learn to talk. Elwyn did gain more weight since his last appointment 2 weeks ago.
09/02/2025
It’s hard to believe this little man is 18months today
12/12/2024
Last night we got home late from the hospital. We stayed the night after his surgery because we didn’t feel comfortable taking him home. With our experience he has been brought back the next day after surgery to the ER. We are glad he did stay because he had developed a cold and had his O2 drop over night. Between the cold and still trying to wake up from surgery he wasn’t breathing the greatest. They gave him oxygen until he was stable enough to try room air. We are currently monitoring him at home to make sure his cold doesn’t turn into anything worse.
10/12/2024
Surgery is done and now Elwyn is in recovery.
10/12/2024
Elwyn was just taken back for surgery. His doctor and another doctor is available to help do his other hand. This way his doctor doesn’t have him under so long.
05/12/2024
So little man got his Christmas pictures taken with his siblings the other day. He has his next surgery on his hands on Tuesday the 10th next week to try to get his thumb and other pinky out. We will travel Monday night to a hotel so we don’t have to worry about being late and the weather. We ask people to pray for Elwyn as he goes into his 7th surgery in his 16 months of life.
15/11/2024
Elwyn is now 15 months old and we are pretty sure that he is teething. He has his hands and arm in his mouth all the time now
21/09/2024
So Elwyn made his way back to the ER tonight. We were worried about his output that he wasn’t having after surgery. After 5hours we were sent home and were told to increase his fluids. We need to add some Pedialyte to his intake to keep him hydrated. They believe that after his week last week and surgery yesterday he is a little dehydrated. 
20/09/2024
We were able to come home last night which made the older kids happy. Poor Elwyn though has been up all night screaming and we can’t get him to calm down. Hopefully this next round of pain meds will help.
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