Acee has many conditions she is dealing with. The most prominent of which is called Bilateral Perisylvian Ploymicrogyria (PMG). This means that she has more of the small ridges and valleys on both hemispheres of her brain than average babies. This condition effects the development of her brain. It is a condition that she will have for her entire life. This form of PMG tends to cause more severe neurological problems including recurrent seizures (epilepsy), delayed development, severe intellectual disability, crossed eyes, problems with speech and swallowing, and muscle weakness or paralysis.
She has a condition called Arthrogryposis which causes contractures of her hands, arms, feet and legs, causing her to hold her appendages in a more tucked position against her body. She also has Bilateral Clubbed Feet and is being treated for Hip Dysplasia (displaced/dislocated hip) with a Pavlik Harness. These conditions will require long-term treatment in hopes of improving her mobility, hopefully resulting in her being able to walk one day.
She is also dealing with a condition called Micrognathia. This is where her jaw is undersized, and in Acee's case, is set back and causes difficulty with breathing and swallowing. She has been treated with oxygen to this point, and will likely have to continue with this for the foreseeable future. In order to overcome her difficulty or lack of swallowing she had surgery just today to have a Gastrostomy Tube (G-Tube) inserted into her stomach. Without this tube, Acee would be unable to suck or swallow any breast milk.
On top of all of this, Acee has twice had a bacterial infection known as Necrotizing Enterocolitis. We were all blessed that this infection was found early on and treated with antibiotics both times as it can be fatal in premature babies like Acee. Let's all hope and pray that it doesn't develop again.
This Gofundme account is being set up to help Acee's family with the substantial medical bills, travel costs, and as much reserve funds to assist with care Acee will need in the near future, after she is discharged to return home for the first time. Acee's care will most likely require substantial, long-term assistance, and this fund will hopefully get her, and her family off on a good start. Any amount will be greatly appreciated. If you are unable to donate, please forward on to friends and family.
Thank you to all who took the time to read this and have been able to donate and share with others.
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