New to ALL of this! Similar stories?

[mneville]

Hi Melissa. Our now two year old was diagnosed at 8 days old due to NJ newborn screening- he is a Double Delta. I second everything that was said here - it is a huge learning process but it gets easier. I would start by keeping a binder for insurance bills ect..I also have a binder for all his medical info- culture reports, lung tests ect...I was so overwhelmed the first year that I forgot about these things and they are important.

Aidan started CPT at 11 days old with Xopenex treatments. He got the VEST at 18 months and wears it an hour a day. He really has grown to like it!He also does Pulmozyne and takes Creon and vitamins. Aidan will be 3 in Sept and at his last visit he was 37 pounds!! He is doing really well. Just a typical crazy two year old with a few extra meds..

Megan

 

[mneville]

Hi Melissa. Our now two year old was diagnosed at 8 days old due to NJ newborn screening- he is a Double Delta. I second everything that was said here - it is a huge learning process but it gets easier. I would start by keeping a binder for insurance bills ect..I also have a binder for all his medical info- culture reports, lung tests ect...I was so overwhelmed the first year that I forgot about these things and they are important.

Aidan started CPT at 11 days old with Xopenex treatments. He got the VEST at 18 months and wears it an hour a day. He really has grown to like it!He also does Pulmozyne and takes Creon and vitamins. Aidan will be 3 in Sept and at his last visit he was 37 pounds!! He is doing really well. Just a typical crazy two year old with a few extra meds..

Megan

 

[Ratatosk]

For me, a lot of it is/was just getting into a routine. I'd have feelings of PURE panic, would scour the internet for other people with the same mutation so I could predict what to expect, how much time we had... Which is silly because sibling with the same mutation can have very, very differing symptoms. Plus people with the same mutation were diagnosed YEARS before DS was born and medications and treatments have changed significantly.

Other times, I'd feel so confident. Amazed at how well I could handle things. Pretty darn proud of myself. Then throw in a cough or a fever and I'm a complete and utter basket case, worrying myself to death. Your feelings are normal and you're not alone. Easier said than done, but enjoy your little one. Try not to dwell on the what ifs.

 

[Ratatosk]

For me, a lot of it is/was just getting into a routine. I'd have feelings of PURE panic, would scour the internet for other people with the same mutation so I could predict what to expect, how much time we had... Which is silly because sibling with the same mutation can have very, very differing symptoms. Plus people with the same mutation were diagnosed YEARS before DS was born and medications and treatments have changed significantly.

Other times, I'd feel so confident. Amazed at how well I could handle things. Pretty darn proud of myself. Then throw in a cough or a fever and I'm a complete and utter basket case, worrying myself to death. Your feelings are normal and you're not alone. Easier said than done, but enjoy your little one. Try not to dwell on the what ifs.

 

[Ratatosk]

For me, a lot of it is/was just getting into a routine. I'd have feelings of PURE panic, would scour the internet for other people with the same mutation so I could predict what to expect, how much time we had... Which is silly because sibling with the same mutation can have very, very differing symptoms. Plus people with the same mutation were diagnosed YEARS before DS was born and medications and treatments have changed significantly.

Other times, I'd feel so confident. Amazed at how well I could handle things. Pretty darn proud of myself. Then throw in a cough or a fever and I'm a complete and utter basket case, worrying myself to death. Your feelings are normal and you're not alone. Easier said than done, but enjoy your little one. Try not to dwell on the what ifs.