Leah was born on August 6, 2016 with her twin brother Mason at Freeman hospital in Joplin Missouri. They were both 6 weeks early and had a 4 week NICU stay. She was born unresponsive and not breathing. Blue as could be. They had to revive my sweet baby girl. They came home on monitors for heart and breathing. They both met milestone's like they should for premiee twins.
One morning around 10am Elye came and got me and told me the twins were awake and Leah was making a funny noise.
I ran into their room. Leah was having a grand mal seizure. I didn't have a clue at that time what was happening. I called 911 as I held my baby girl. It took almost 25 minutes for them to get to my home bc we lived in Deerfield at the time and they had gotten lost. She stayed in her seizure for 15 minutes as I held her. Her whole episode probably lasted a bit longer than that. They got there and she was just really lethargic. They took her to NRMC where we were later discharged thinking this was a one time thing. But just a few days later she had another and we were referred to children's Mercy in KC. We did several eegs, 5 hospital stays and at least 3 medicine changes while in there care. Two of which she became allergic to with horrible rash all over. And no diagnosis or explanation why this was happening. We as a family and her primary care doctor Katie thought it would be a good idea to transfer her care to Springfield Mercy Pediatric Neurology in Springfield MO. She was finally diagnosed in August of this year with epilepsy. As a mom the relief of that was a blessing. I knew what could be done to help my baby girl as well as she could now get services she so desperately needed. Now on the flip side it was scary. Would she ever out grow it? Would she have a normal childhood? Would she be able to play sports? Drive? Ever live on her own and so many other questions.
SMNC goal is to have her seizure free in two years and hopefully to be that way without medication. But as of now each time she has another episode that goal starts over. We are now on medication number 5 in order to control it. She has also started having them in her sleep.
SMNC did send her for physical therapy bc her muscles are weaker on one side than the other. As well as prescribed a service dog bc of the night seizures. We have an MRI in January. And are weaning off her trileptal to depakote. Her normal seizure pattern is 1-2 every 2-3 weeks. She normally becomes really sleepy afterwards for 2-4 hours. But recently her after seizure behavior has changed to being really emotional and agitated afterwards. This is another reason for her service dog. He or she may be more comfort to her afterwards.
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