Our precious Haylee Mae. Haylee is 5 years old. Haylee was Born in October 2008 full term via scheduled c-section. The doctors took her to NICU as soon as she was born because they thought she may have had fluid in her lungs, although all test came back negative she spent 4 days in the NICU and the doctors caring for her had mentioned they wanted to do an ultrasound on her head because it was small. After 4 days she was ready to come home and when we questioned about the ultrasound the doctors acted like they had never mentioned anything and did not know what we were talking about.
We brought Haylee home and she seemed to be like any other happy baby except she slept through the night and into the late morning, unlike her Brother who did not sleep through the night until he was almost 5 years old. Everything was great until one Sunday when Haylee was 3 months old, we were shopping in Trader Joe’s and Haylee was sleep in her car seat and all the sudden she woke up her eyes rolled back in her head and her fists came up to her chin and started shaking for about 15 seconds. We weren’t sure what it was so I took her to the doctor the following day and the doctor suggested it may be a bad dream (not sure what a 3 month old would be having bad dreams about) so we left it at that. The following Wednesday we took Haylee to her Granny’s while we went to work, by 9am she was falling back asleep and had what appeared to be a seizure, within the 20 minutes it took me to get from work to granny’s she had 3 more. We spent the next few hours in the emergency room. The only thing the nurse would tell us is that she has a small head. After being there for 6+ hours they transferred us to Miller Children’s Hospital where we spent the next three days doing test and waiting for answers. On the 3rd night there we finally saw the neurologist who told us that Haylee has Lissencephaly (smooth brain) on the severe end of the spectrum and that she will never walk or talk and probably won’t live to see her 3rd birthday.
Since then Haylee has had multiple diagnosis GERD, Epilepsy, Hiatal Hernia to name a few. She has had two eye surgeries, and is now fed via G-tube due to aspiration. She has been on Phenobarbital since she was three months and also had a go at Keppra which was horrible. She has been on CBD oil since Mid march of this year. Haylee was having 10 sometimes more seizures per day some lasting over 10 min. Since starting the oil she has only been having 1-3 a day (sometimes less) and the duration is now only 30 seconds -3 minutes long. Not only has it helped with her seizures, but it has helped with her GI. She used to vomit at least 1 meal per day, and now it’s rare that she throws up at all, she has gained 7 lbs since starting where before it would take 2 months to gain 1lb. Haylee has now recently started to show purposeful movement with her arms that we have never seen before and we hope to see more when she is fully weaned from her other Pharmaceuticals.