Care for Carley
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Carley Lynn was born June 8, 2021.
She has two healthy older brothers and completed our now family of five! She is the daughter of Eric and Ashley Sullivan in London OH. Eric and Ashley are originally from Terre Haute IN.
Early in the pregnancy it was discovered there was something going on but genetic testing was clear and they couldn't get a diagnosis. After a very long and dramatic pregnancy with 10+ ultrasounds and weekly appointments, Carley came in with a bang! She struggled to breathe from the start and intubated right away and sent straight to the Children's Hospital. The Early ultrasounds were right, Carley had something going on. After extensive genetic and physical testing, we still don't have a diagnosis. Carley has two major areas going on right now. First, she had a narrowing in her airway that makes it feel like breathing through a straw. She kept getting tired and dropping her stats, after 4 months of testing in NICU they finally placed a trach and she came home! Just shy of 5 months Eric and Ashley spent travelling almost daily back and forth to NICU after work. Carley also has low muscle mass in her limbs, and joint muscle contractures, a condition called arthrogryposis. In her case we have an unknown cause. She is more affected in her legs than her arms but she does have generalized muscle weakness. While there is no cure, she will face a lifetime of casting, surgeries, and physical therapy. Right now we see so many specialists including pulmonary, ENT, complex care, ortho, neuromuscular.... the list goes on!
Right now we came home with a trach and vent set up so we could get out of NICU. Carley is breathing great after the trach placement and we have hopes of weaning off the vent!
All this has been an exhausting journey, but for Carley we are thankful!!
Ashley has missed so much work this year to get Carley home and we continue to struggle to get nursing support (daytime) so we can work! Carley will continue to require extensive therapies and travel. Her ortho doctors are in PA and we hope to see a movement specialist in AZ this winter.
While we don't like asking for help, this has become bigger than us and we just want Carley to get the care she needs!
If our situation calls to you, donate, share our story to a nurse that is near us, or visit our Amazon wishlist! It will change based on what we need for her at what time. Currently we are getting our house ready for whatever nursing support we can get, getting ready for serial casting her legs, and getting things to stimulate her and encourage movement!
May God bless us all as we watch this little girl grow!
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Ashley Sullivan
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London, OH