Lily Olivia Weidner

Update

6-21-10

We have been home with Lily for 7 weeks now and have gotten into a good routine. We have also become pro’s at placing and checking the Nasogastric Tube that Lily receives her medicine and food from. Thankfully she has avoided any major infections thus far, unfortunately her seizure activity is getting harder to control. At one point we had orders from her doctors’ that we would be able to administer 1 dose of the emergency Diazepam rectal gel every 4 hours and now we have been told to give her as many as 3 doses in a thirty minute time period because her seizures are getting so hard to shut down.

Lily’s daily medicine schedule:

Maintenance drugs:

*10 am
Clonazepam ODT – 0.250mg
Topamax – 1.5ml
Keppra – 1.7ml
Phenobarbital – 5.5ml

*4 pm
Clonazepam ODT – 0.250mg

*10 pm
Clonazepam ODT – 0.250mg
Topamax – 1.5ml
Keppra – 1.7ml
Phenobarbital – 5.5ml

Breakthrough Seizure Meds:
2.5ml doses of Diazepam as needed Q 10min (usually 3-4 times daily).

If seizure does not stop after 2 Diazepam she gets a 7.5ml Phenobarbital “loading dose”

We want to thank everyone for your kind words, wishes, prayers and donations as they are all appreciated tremendously.

Sincerely, Katee and Oliver Weidner

Lily Olivia suffers from seizures that are extremely difficult and at times impossible to treat and last anywhere from 45 minutes to hours at a time. Typical to these conditions she also has trouble breathing and eating, she receives nutrition from a tube inserted through her nose to her stomach. Lily spent the first three and half weeks of her life at the University of Oklahoma Children’s Hospital in Oklahoma City, Oklahoma. Her parents, Katee and Oliver were able to bring her home on May 3 with the help of Hospice.

Lily has an older brother Kaden. Kaden is a normal healthy six year old. Her parents are both in their twenties and attend college. Due to Lily’s condition, Katee will not be able to return to work or school. Both Katee and Oliver have missed a lot of work during April and their savings are dwindling. Insurance should cover most of the medical expenses, but they still have travel and lodging expenses to Oklahoma City, and beyond for Lily.

We ask that you help them with these expenses. NOAH is a 501 (c) 3 non-profit entity and as such your donations are tax deductible. We accept checks and credit cards through Pay Pal. We thank you for your prayers and generous donations.

Lissencephaly, which literally means smooth brain, is a rare brain formation disorder caused by defective neuronal migration during the 12th to 24th weeks of gestation, resulting in a lack of development of brain folds (gyri) and grooves (sulci).^[1] It is a form of cephalic disorder. Terms such as ‘agyria‘ (no gyri) or ‘pachygyria‘ (broad gyri) are used to describe the appearance of the surface of the brain. Children with lissencephaly are severely neurologically impaired^[2] and often die within several months of birth.

Dandy-Walker syndrome (DWS), or Dandy-Walker complex, is a congenital brain malformation involving the cerebellum and the fluid filled spaces around it. A key feature of this syndrome is the partial or even complete absence of the part of the brain located between the two cerebellar hemispheres (cerebellar vermis).^[1] The Dandy-Walker complex is a genetically sporadic disorder that occurs one in every 25,000 live births, mostly in females.^[2]

Agenesis of the Corpus Callosum (ACC) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. Agenesis of the corpus callosum occurs when the corpus callosum, the band of tissue connecting the two hemispheres of the brain, fails to develop normally, typically in utero.

Hydrocephalus^[1] (pronounced /ˌhaɪdrɵˈsɛfələs/), also known as “Water on the Brain”, is a medical condition. People with hydrocephalus have an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability. Hydrocephalus can also cause death.

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