1.27.13 Says Who?

Time to update our 'About Aimee' tab. While we're at it, we thought we'd share a bit about Aimee from our perspective and bit about Aimee from a medical perspective with all of you too.

What We Say:

-Aimee is peaceful in the midst of storms. Her attitude is primarily full of delight, relaxation, and joy.

-Aimee holds the world title for best cuddler.

-Aimee is ticklish and she laughs at the sounds that make the rest of us cringe (screaming sibling, smoke alarm, fire engine, train whistles, high pitched tools).

-Aimee likes to hold hands and squeeze fingers.

-Aimee recognizes voices.

-Aimee is bright. She protects herself by going to sleep when she is scared, overwhelmed, or unsure of her surroundings.

-Aimee is self motivated. No matter how hard it is and how many times she cannot do it, she continually tries to hold up her head.

-Aimee is beautiful.

-Aimee is a ballerina at heart.

-Aimee likes country music, 50's, and 80's.

-Aimee is a mystery worth spending a lifetime researching.

-Aimee is limited and challenged; God is unlimited and not challenged by her situation.

-We love Aimee!



What The Doctors Say:

-Severe Developmental Delay- Aimee has developed to the abilities of a 2-3 month old baby. They expect her to remain at this "age" for the rest of her life.

-Microcephaly- Aimee has a very small head (.26 percentile) due to her lack of brain growth since birth. The growth in her face has been disproportionate and is causing little issues, for example her tear ducts have been forced to narrow and are continually clogged despite probing and stints.

-Delayed Myelination- The wiring that runs signals through the brain is coated with a substance called myelin, which allow these signals to run through quickly and to the correct place. When Aimee was a baby her myelin was severely underdeveloped, which did not allow her brain to form the connections it should have been learning to make at that time. The doctors believe this is just a symptom of her overall disorder, which is undiagnosed.

-Hypotonic- She has very low muscle tone, not lack of strength, but her muscles are too loose which keeps her from building strength. This causes lots of secondary issues, such as scoliosis.

-At Risk for Aspiration- Due to the low tone in her throat and mouth, it is considered unsafe for Aimee to take food and fluids by mouth. She has a feeding tube and receives a home blended diet through that. She also fights to deal with secretions like phlegm and saliva, which we use a suction machine to clear in order to protect her airway.

-Sleep Apnea and Hypoventilation- Also due to the low muscle tone, Aimee struggles to breath adequately while she sleeps. She retains excess carbon dioxide in her blood stream due to shallow breathing. She has been very sleepy her whole life and we think waking up hundreds of times a night is part of the cause. She is on a BiPap machine.

-High Risk for Respiratory Infection- Again due to the low muscle tone and her inability to handle secretions, the doctors' statistics give her a slim chance of living to adulthood, expecting her to begin to fight with pneumonias and eventually lose that fight. She is on steroid inhalers to help her prepare to fight the many illnesses that come her way.

-Chronic Constipation- Yet again due to the low muscle tone, Aimee needs help from medications, aside from lots of dietary supplements, to keep waste moving out.

-Congenital Bilateral Club Feet- She was born with club feet that were corrected through treatment.

-Hearing Impairment- She has mild to moderate hearing impairment in her both ears and wears bilateral hearing aids especially to hear lower tones.

-Cortical Vision Impairment- Her brain is unable to get many visual signals through, meaning her eyes see well and send the signal to the vision center, but her brain looses the information or can't interpret it most of the time.

-General and Localized Seizures- Aimee has multiple different types of seizures, both general tonic seizures that involve her whole brain at once and localized seizures that are only one part of her brain at a time. She is on a couple different medications to control them.

-Reflux- Partly due to muscle tone and partly due to constipation, Aimee struggles with reflux and is on strong medication to combat it.