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May 19-25

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In a blink of an eye Everleigh has turned 4 months somehow! Within the last 4 months a lot has changed, and she has been growing like a weed! She is smiling and giggling, especially at her ceiling fans. Ev loves to stand up, with us helping obviously, and refuses to sit. We like to say that she would rather be a 4x6 board than sit and have pressure on her big ole belly. We haven't seen any seizure-like activity since leaving the hospital luckily!

Recently, we have had a few appointments for Everleigh. On February 23rd, she had her 4 month well check-up at Black Hills Pediatrician. She has continued to have a high heart rate, like she has from the beginning. Our pediatrician has checked at all her well check-ups and it has continued to stay around the 170-180bpm. She informed us that it usually lowers by this point, but Everleigh's hasn't. Just to be precautious, she spoke to one of the cardiologist at the clinic and they agreed with her about doing an EKG. They sent off the EKG to be read by a heart hospital in Omaha. Yesterday, March 2nd, we received a call back from BH Ped's saying that there was a slight abnormality on the right side that they would like to have checked out. We have an echocardiogram scheduled for March 16th.

On March 2nd, Everleigh had her recheck EEG sleep study completed. For this study, we had to keep her sleep deprived, and she was awake from 11am to about 2pm. When you have a sleep deprived baby and probes being put all over your head, you get a very grumpy baby! Luckily, she was able to take an hour nap while being monitored, but was woken up for her awake portion. She had to look at a bright strobe light for what seemed like forever, but was finally done with her EEG. On March 3rd, we received a call from the Neurologist office. They informed us that he went over the test report and everything came back normal!🙌 The neurologist would like to do another EEG in 6 months. He would also like to keep her at the dose of Phenobarbital she's been on since about 2 months. We may be upping that again at our follow-up with the neurologist on March 13th depending on her weight. 

As of right now, we continue to do what we have been doing and take this all day by day. We have a beautiful girl who continues to show us how strong she is! Her doctors and pediatricians continue to give us the best care she needs and help us in any way they can. We will update you all once we have more! Thank you all for your continued prayers and God bless!

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